Kinsagala E, Mbivnjo EL, Okeah BO, Khan MA. Community and Informal Care Providers at the Heart of Universal Health Coverage in sub-Saharan Africa: A Position Paper (Position paper). SEEJPH 2021, posted: 17 April 2021. DOI : 10.11576/seejph-4353 P a g e 1 | 15 POSITION PAPER Community and Informal Care Providers at the Heart of Universal Health Coverage in sub-Saharan Africa: A Position Paper Ephraim Kisangala1,2, Etheldreda Leinyuy Mbivnjo3, Bernard Ojiambo Okeah4, Mohammed Azhar Khan5 1 African Centre for Systematic Reviews and Knowledge Translation, College of Health Sciences, Makerere University (African Centre MaKCHS) P.O. Box 7072 Kampala, Uganda; ephraim- kis@gmail.com; 2 Kairos Hospital, P.O. Box 7573 Kampala, Uganda; 3 Biaka University Institute of Buea, P.O. Box 77 Buea, Cameroon; metheldreda@gmail.com; 4 School of Healthcare Sciences, Bangor University, LL57 2EF Gwynedd, United Kingdom; ber- nardokeah@gmail.com; 5 Dr. M A Khan Dental Practice, Unit B, 10 Barnard Road, Sherwood, Durban 4091, South Africa; mazhar015@gmail.com; Corresponding Author: Ephraim Kisangala; Address: African Centre for Systematic Reviews and Knowledge Translation, College of Health Sciences, Makerere University (African Centre MaKCHS) P.O. Box 7072 Kampala, Uganda; Email: ephraimkis@gmail.com; mailto:metheldreda@gmail.com mailto:bernardokeah@gmail.com mailto:bernardokeah@gmail.com Kinsagala E, Mbivnjo EL, Okeah BO, Khan MA. Community and Informal Care Providers at the Heart of Universal Health Coverage in sub-Saharan Africa: A Position Paper (Position paper). SEEJPH 2021, posted: 17 April 2021. DOI : P a g e 2 | 15 . Abstract Globally, increased demand on often scarce healthcare resources and those challenges incumbent in responding to the coexistence of infectious and non-communicable diseases warrant the need to address persistent health inequities. Understanding the complex intersectionality of vulnerability and reaching those in most critical need of healthcare lies at the heart of fostering and sustaining resilient healthcare systems. Harnessing the long-recognised value of Community and Informal Care Providers (CICPs) is instrumental to Universal Health Coverage (UHC). The present COVID-19 context serves as a poignant example of where access to formal healthcare services by many has become increasingly difficult. Here, the value of informal or volunteer-led health ser- vices has been a lifeline for many. For several decades, formal reportage has evidenced the estab- lished role of CICPs, particularly across Sub-Saharan Africa with quantifiable efficacy across a number of domains, such as, maternal and child health, neglected tropical disease prevention, tu- berculosis care and malaria control. CICPs have been sustainable and effective as a conduit be- tween the formal and informal health sectors, and between health facilities and the remotest of communities. Maximising the function of CICPs relies on socio-culturally, geographically sensi- tive, and bespoke support; psychosocial, practical, and logistical capacitation coupled with situa- tionally and culturally appropriate monitoring and evaluation. The Astana Declaration highlights the centrality of building on existing knowledge, insight and resource. We therefore argue that CICPs are indispensable in Africa’s move towards UHC, and hold promise for acceptable, acces- sible, affordable, and quality healthcare to everyone who needs to get, be and stay healthy. Keywords: Community Health Workers, Informal Caregivers, Universal Health Coverage, sub- Saharan Africa Source of funding: The WHO African Regional Office and Hidayo Noguchi African Prize (HNAP) for Medical Services sponsored the processing fee for this article. Conflict of interest statement: The authors declare no financial or non-financial conflicts of in- terest. Acknowledgments: The authors acknowledge the mentorship of Professor Margaret Gyapong, Director of the Institute of Health Research, University of Health and Allied Sciences, Ghana. Authors’ contributions: EK contributed to the body of the essay and managed correspondences with the mentor and WHO African Regional Office; ELM wrote the outline, abstract and intro- duction of the essay; BOO made contributions to the body of the essay, wrote the conclusion and compiled the first complete draft; and MAK contributed to the body of the essay. Kinsagala E, Mbivnjo EL, Okeah BO, Khan MA. Community and Informal Care Providers at the Heart of Universal Health Coverage in sub-Saharan Africa: A Position Paper (Position paper). SEEJPH 2021, posted: 17 April 2021. DOI : P a g e 3 | 15 Background Africa’s life expectancy is 11 years below global mean levels (1), and hosts three coun- tries (Central African Republic, Lesotho, and Swaziland) with the least life expectancy at birth (<50 years) between 2010 and 2015. In West Africa, the life expectancy at 60 years is 14.1 years for men and 14.7 years for women (2). Sub-Saharan Africa is now fac- ing a dual burden of non-communicable and communicable diseases with an age-stand- ardised disability-adjusted life-years (DALYs) of 21 757·7 per 100,000 population for non-communicable diseases which is comparable to that of communicable, mater- nal, neonatal and nutritional disorders com- bined (26 491·6 DALYs) in 2017, highlight- ing the need for health systems to address these changing tides (3). Managing non-com- municable diseases is costly, and poses addi- tional threats for African healthcare systems that have relied heavily on donors and the pri- vate sector for healthcare financing while the share of health in public funds is compara- tively small (4,5). In addition, out-of-pocket expenditure has put 1.14 billion people below the poverty line, Africa has the poorest access to essential quality health services in the world (1) with inefficient information sys- tems and health inequalities (6) amidst poor governance and inadequate human resources for health (7). Good health and wellbeing is a pre-requisite, measure and consequence of sustainable development, making its univer- sal and equitable access an absolute necessity (6). Consequently, the World Health Organi- sation (WHO) has established the triple bil- lion agenda with Universal Health Coverage (UHC) for one billion additional individuals by 2023 as one of its targets (8). This comes as a reinforcement to the Tokyo Declaration on UHC (9) and the Astana Declaration on primary health care as the gateway to UHC(10). Also, the Harmonisation for Health in Africa initiative has been revisited and a package for essential healthcare ser- vices established to drive the move towards UHC in the African region (1). The Astana Declaration is committed to training, recruit- ing and retaining health personnel including those providing primary care in the most ru- ral/remote areas with special attention to de- veloping countries (10) which reiterates Community Health Workers’ (CHWs) piv- otal role in UHC (11). More so, the WHO has developed guidelines to enhance CHW pro- gramme design, implementation, perfor- mance and evaluation by member states and partners to support the strive towards UHC as a fundamental pillar for achieving the Sus- tainable Development Goals (SDGs) (12). CHWs are generalist or specialist (13,14) paid or unpaid lay and paraprofessionals who provide culturally acceptable care to commu- nities in which they live and have undergone short standardised training (15). Closely re- lated to them are informal helping or social support networks (family, friends, neigh- bours, natural helpers, role-related helpers, people with same problems and volunteers) who willingly offer unpaid services and peo- ple naturally turn to them for help (16), cre- ating a near balance in care demand and sup- ply. In this position paper, CHWs and infor- mal helping networks will be collectively re- ferred to as Community and Informal Care Providers (CICPs) and excludes medicine sellers identified as informal providers by some studies (17). These CICPs have been in use since the mid twentieth century (13,16) and have proven their worth in the ongoing coronavirus pandemic (18,19). In addition, the Kampala Statement notes the contribution of CHWs to Sustainable Development Goals (SDGs) 1, 2, 3, 5, 6, 10 and 17 (20). Further- more, SDG 4 is promoted by training/educat- Kinsagala E, Mbivnjo EL, Okeah BO, Khan MA. Community and Informal Care Providers at the Heart of Universal Health Coverage in sub-Saharan Africa: A Position Paper (Position paper). SEEJPH 2021, posted: 17 April 2021. DOI : P a g e 4 | 15 ing CHWs (13,15), and the relationship be- tween the third SDG (good health and well- being) and all other sixteen SDGs (6), demonstrates CHWs crucial role in both UHC and sustainable development (See Fig- ure 1 and Figure 2 below). Thus, UHC pro- vides a critical linchpin without which attain- ing the United Nation's health-related agenda may remain elusive. We therefore argue that with appropriate support, monitoring and evaluation, CICPs are indispensable in Afri- ca's move towards UHC and hold promise for acceptable, accessible, affordable, and qual- ity healthcare to everyone who needs to get, be and stay healthy. Figure 1: CICPs drive sustainable development by ensuring UHC Figure 2: Community and Informal Care Providers (CICPs) at the Heart of Good Health and Well-being (Adapted from the WHO Health in the SDG Era Infographic) Sustainable development UHC CICPs Kinsagala E, Mbivnjo EL, Okeah BO, Khan MA. Community and Informal Care Providers at the Heart of Universal Health Coverage in sub-Saharan Africa: A Position Paper (Position paper). SEEJPH 2021, posted: 17 April 2021. DOI : P a g e 5 | 15 CICPs in accelerating UHC Health systems in sub-Saharan Africa are grossly underfunded and this has a huge lim- itation on the extent to which health services are made available to citizens (20). Besides, the available health services may not be eas- ily accessible due to barriers partly occa- sioned by socio-political contexts. CICPs can potentially expand the reach of healthcare services in hard to reach areas thereby im- mensely improving UHC. One area that has greatly benefited from the invaluable work of CICPs is HIV management services. Evi- dence from a multi-country study published by the Community Action Network (CAN) conducted in Ethiopia, Malawi, Zambia, and South Africa revealed how CICPs continue to improve access to universal counselling and testing as well as scaling up anti-retroviral therapy (21). The research further showed that CICPs were actively involved in mobi- lizing communities for HIV prevention ser- vices and providing HIV testing in some in- stances. Moreover, the CICPs are instrumen- tal in promoting the health-seeking behaviour of communities thus contributing to the up- take of HIV related services such as preven- tion of mother to child transmission (PMTCT) (21). Other potential areas for the application of CICPs include providing sup- port to HIV patients and directly observed treatment (DOT) for HIV and Tuberculosis. In Uganda, CICPs have been utilized in the provision of home-based care for children living with HIV (22). Although some have argued that CICPs lack the knowledge and skills to deliver quality healthcare services, pre-deployment training and continuous sup- portive supervision with remote digital sup- port may help bridge this gap. CICPs play a role in the long-term management of chronic- illnesses including non-communicable dis- eases (NCDs). A South African based study recorded the roles undertaken by CICPs (in- formal caregivers) and the challenges they face while looking after advanced cancer pa- tients in end of life care (23). In such in- stances, the work undertaken by CICPs com- plements palliative care services provided by hospices. Undoubtedly, end of life care can be very challenging and distressful even to the best qualified professionals, hence, the need to provide relevant support including stress management services for CICPs under- taking such roles. Some countries lack orga- nized palliative care services, hence, the vital role of CICPs who are the main service pro- viders as evidenced by a Ghanaian study that explored the motivations and experiences for family caregivers for advanced breast cancer patients (24). Delivering essential healthcare services is often complicated in emergency situations including disasters and other cata- strophic events. More often, there is limited access to life-saving interventions by ex- tremely vulnerable populations considering the delays as emergency responders under- take risk assessments before accessing the af- fected persons. A recent publication on the COVID-19 emergency response actions highlighted on the utilization of CICPs through informal networks to bolster local re- sponse to a serious health problem in infor- mal settlements namely the Kibera slums in Kenya (25). Specifically, the CICPs have played an immense role in promoting sanita- tion, contact tracing, and initiating isolation measures for suspected cases. Additional ex- amples of the application of CICPs in emer- gency response includes the Ebola virus epi- demics in West Africa and the DRC where they mobilized community adherence to Kinsagala E, Mbivnjo EL, Okeah BO, Khan MA. Community and Informal Care Providers at the Heart of Universal Health Coverage in sub-Saharan Africa: A Position Paper (Position paper). SEEJPH 2021, posted: 17 April 2021. DOI : P a g e 6 | 15 basic infection prevention measures includ- ing sanitation precautions (26). A distinct ad- vantage is the use of CICPs in populations suffering from the ravages of war or natural disasters such as the Democratic Republic of Congo and Somalia. Notably, CICPs have been used successfully to undertake screen- ing for cardiovascular disease in war tone countries like Syria and Yemen (27); this has potential application in warring African states. This versatility proves that CICPs have a great utility in supporting health sys- tems that are under pressure. In such circum- stances, CICPs have the potential to make an enormous difference as first-line responders and coordinating with external responders through rapid exchange of actionable data (28). This reduces the cost of emergency re- sponse since the CICPs are already within the emergency situation and may take prompt ac- tions when provided with relevant support. Another successful example of the enormous potential of the CICPs in emergency response applicable to African settings is the Vietnam- ese village health collaborators who extend the reach of services beyond the formal health system (29). Established in 1999 through a ministerial directive, this informal workforce has sustainably contributed to the betterment of key health indicators in addi- tion to accelerating UHC. During the prevail- ing COVID-19 crisis, Vietnam remains one of the countries with the lowest number of cases (268 cumulative cases, 216 recoveries, and no deaths as at Jun 2020). Although Vi- etnam has a limited capacity for massive test- ing, the CICPs (village health workers) have been instrumental in surveillance, detection of cases at the grassroots, and effecting quar- antine measures. The mountainous nature of Vietnam renders most of the country inacces- sible, hence, the vital role of the informal health workforce that resides within the com- munity and has a better contextual under- standing. In addition to providing a readily available workforce deployable in emer- gency situations, CICPs also provide health education, hygiene and sanitation, food safety, disease prevention, maternal and child health, first aid, family planning, and imple- menting health programs. As such, the work undertaken by the CICPs has an immense im- pact on UHC and could be potentially aug- mented through additional capacity building and support. CICPs within the informal net- works also have the potential to support the health of the elderly population that contin- ues to grow rapidly in sub-Saharan Africa from approximately 46 million to 165 million by 2050 according to WHO estimates (30). Family members and friends constitute part of the informal social networks with the po- tential for improving health outcomes for the elderly particularly when empowered and ac- corded the relevant support from the formal health sector. CICPs have also shown much promise in the provision of rehabilitative ser- vices including traumatic brain injury (31). This potentially takes the caring burden off the formal healthcare workers as family and informal networks step in to support the reha- bilitation of their loved ones. A Nigerian based study also shows how CICPs have been relied upon to provide rehabilitative services to children with cerebral palsy (32). Though not widely acknowledged, the formal healthcare system equally utilizes CICPs in meeting the care needs of hospitalised pa- tients. More than often, family and friends provide additional care including nutrition, promoting patient hygiene, and providing on- going psychosocial support to the hospital- ized patients. For instance, a recent publica- tion shows how CICPs provided informal care to stroke patients admitted in an acute Nigerian hospital (33). Despite the availabil- ity of organised health services, utilisation Kinsagala E, Mbivnjo EL, Okeah BO, Khan MA. Community and Informal Care Providers at the Heart of Universal Health Coverage in sub-Saharan Africa: A Position Paper (Position paper). SEEJPH 2021, posted: 17 April 2021. DOI : P a g e 7 | 15 may be influenced by the complexities of so- cio-cultural context. The intersectionality of gender dynamics, belief systems and percep- tions of health care and of health profession- als are notable factors (34). Uptake of exist- ing healthcare services is fundamental in achieving the UHC agenda, hence, the need for considerations to overcome any potential barriers. However, the formal healthcare sys- tem is already overburdened and has limited capacity to navigate all the socio-cultural bar- riers limiting service utilization. CICPs pro- vide a unique workforce residing within the same social environment. In the context of marginalized communities, CICPs are capa- ble of providing socio-culturally acceptable and accessible healthcare services thus pro- moting good health and well-being. CICPs have been successfully utilized in bridging health disparities as observed in a study where CICPs provided parent-child interac- tion therapy (PCIT) to treat development conduct disorders amongst Latino families (35). With relevant support and training, the CICPs were able to overcome social-cultural barriers by virtue of their unique positioning and effectively delivered the PCIT to families that required it (36). There is a marked differ- ence between the type of care provided by the formal healthcare workers and CICP’s. CICPs provide a more personal level of care due to their closeness to the individuals under their care. Care is directed appropriately since CICP’s have an intimate knowledge of the patient’s circumstances (37). The utility of CICPs is equally evident in improving ac- cess to health promotion interventions that rely on informal networks in promoting health behaviour change. This is exemplified in the "Health works for women" intervention where work-based natural helpers influenced women to adopt positive health behaviours namely smoking cessation, healthy eating, physical activity, and cervical screening (38). Notable is the relevant training and infor- mation materials given to the natural helpers involved in this intervention. Informal net- works provide a suitable environment for in- dividuals to continuously discuss their health concerns with CICPs freely and obtain rele- vant advice. Unlike in the formal healthcare system, people tend to trust their friends and peers more than a healthcare worker they have met for the first time. Studies of sexual and reproductive health amongst adolescents in Uganda, found that young people ap- proached CICPs about contraception and sex- ually transmitted diseases (STDs) since they had a longer relationship with them that was built on trust and confidentiality (39). Evi- dence has shown that gender differences may pose a challenge to accessing healthcare ser- vices thus undermining the ultimate goal of UHC. A recent study on social support and informal health networks reported a tendency for inclination towards one’s gender when seeking social support (40). Mental health services also utilize CICPs for continuity of services outside the formal healthcare sys- tems. Despite facing many challenges, CICPs have provided care to persons with severe mental disease in Ghana (41), a country with limited capacity for mental health services. Another study on alternative mental health services described the vital role played by churches in promoting the mental well-being of their members (42). Persons in need of mental health support tend to easily trust ser- vice providers from their socio-ethnic con- text. As such, it is much easier to establish a therapeutic relationship and this could signif- icantly impact on the treatment outcomes as chronicled in "the role of the black church in the south" study (42). This is also supported by another study which demonstrated how natural helpers bridged health disparities amongst minority African American men Kinsagala E, Mbivnjo EL, Okeah BO, Khan MA. Community and Informal Care Providers at the Heart of Universal Health Coverage in sub-Saharan Africa: A Position Paper (Position paper). SEEJPH 2021, posted: 17 April 2021. DOI : P a g e 8 | 15 (43). Informal care providers could also pro- vide psychological support following trau- matic events. This was the case following the September 11 terrorist attack where a signif- icant number of people shared their traumatic experiences with hairdressers, librarians, and bartenders (44). CICPs are also critical in the management and prevention of NTDs through a series of activities including mass drug administration, health education and providing feedback on the side effects expe- rienced by the community members (45). Even in civil unrest, CICPs continue to de- liver care and worthy of note is the malaria testing and treatment programme during 6 years of war in the Central African Republic (46). In integrated community case manage- ment of childhood illnesses, CICPs have pro- vided essential treatment for diarrhoea, pneu- monia and malaria in remote areas of Uganda (47)and the cost evaluation of such interven- tions by CHWs in South Africa showed that they can be funded from domestic health budgets (48) thereby reducing the risk of eco- nomic hardship resulting from large out-of- pocket expenditures. CICPs are also very in- strumental in the early diagnosis of cervical cancer (49) a growing health challenge in Af- rica (2). Criticisms and counterarguments Discussions on whether or not to integrate CICPs as part of the formal healthcare deliv- ery system remain inconclusive with protag- onists highlighting some perceived chal- lenges. Several cases have been highlighted in mainstream media whereby CICPs mas- querade as trained healthcare professionals providing substandard services and often so- liciting payments for poor quality services. This may also be compounded by the weak law enforcement mechanisms in sub-Saharan Africa and endemic corruption that endan- gers the health of the unsuspecting public. It’s also been argued that CICPs lack the ca- pacity to self-regulate as professionals and often align themselves with multiple pro- grammes provided, they earn a stipend, and this potentially compromises their effetivness as well as the set standards in care delivery. In addition, the dynamics in urban popula- tions may make it impossible for CICPs to fulfil their primary objectives. However, these challenges can be overcome through the establishment of the necessary regulatory structures to govern the capacity building of CICPs, integration into the formal healthcare services, their practice, and other profes- sional bottlenecks. CICPs may occasionally feel overburdened and distressed to meet the high demands on their constantly changing roles. In addition, their lack of training prior to assuming their roles further complicates their functioning and may undermine the quality of care they provide. However, it is possible to provide the CICPs with additional support and training either remotely or through organised formal learning activities. The CICPs also gain knowledge and experi- ences through caring which are transferrable as they continue to support other members of their social networks with similar health needs undoubtedly relieving pressure from the formal health systems. Involving CICPs in providing mental health support services has also been criticised due to the risk of suf- fering compassion fatigue specifically fol- lowing prolonged exposure to traumatic ac- counts (50) in addition to the stresses that come with this role (51). However, this can be overcome by creating the relevant psycho- social support systems for CICPs to cater for their mental health needs. Additionally, providing appropriate links to the formal healthcare system could make the CICPs more effective especially when required to Kinsagala E, Mbivnjo EL, Okeah BO, Khan MA. Community and Informal Care Providers at the Heart of Universal Health Coverage in sub-Saharan Africa: A Position Paper (Position paper). SEEJPH 2021, posted: 17 April 2021. DOI : P a g e 9 | 15 escalate the care of patients requiring special- ized treatments. It is important to note that in- formal care givers quickly transition into their roles often requiring huge adjustments that may include discontinuing school, and changing or giving up formal employment. The mental pressure associated with these sudden adjustments may overwhelm some caregivers and render them helpless (23,30,52–54). Consequently, providing vital support including training of the CICPs helps minimize any potential distress and make them more effective in their inevitable roles (55). Although family caregiving has some therapeutic effects on the caregiver (56), looking after deteriorating patients may in- crease their stress levels (52) which in turn disrupts the harmonious functioning of the CICP’s family (57). Informal caregivers also bear huge economic burdens due to the lack of compensation, additional expenses they incur to look after loved ones, and the oppor- tunity costs for getting formal employment or running a business (53,58–60). Another criti- cism for utilizing CICPs is linked to the chal- lenges associated with the recruitment and re- tention of this critical workforce into the for- mal healthcare services. A high attrition rate of the CICPs has always characterized pro- grams utilizing this approach. In some in- stances, resentment and lack of trust have led to the alienation of CICPs. However, it is pos- sible to overcome these challenges by care- fully tailoring the CICPs recruitment and de- ployment. As suggested by evidence from a Ugandan based study (61), applying the nat- ural helper model can potentially bolster the community's trust and cooperation with in- formal care providers. The burdens faced by CICPs may also be overcome by adapting gender identities and enhancing generational social exchange as highlighted by a review on the care working dynamics within the com- plexities of widespread HIV infections and fragmented families in the east and south Af- rican regions (62). Conclusion Healthcare systems in sub-Saharan Africa face enormous challenges that could poten- tially slow the attainment of UHC. The con- stantly changing needs for sub-Saharan Af- rica’s population specifically the ballooning elderly population, acute healthcare worker shortages, widespread epidemics, and poorly equipped healthcare systems increases the need to further strengthen and expand her health workforce. Notably, the acute shortage of healthcare workers significantly limits ac- cess to essential healthcare services. This calls for an urgent need to innovatively diver- sify and extend the reach of healthcare work- ers. CICPs offer potential promise and can improve access to existing healthcare ser- vices by complementing the formal healthcare system. This is based on evidence of their application across different services, for example, HIV management, mental health, emergency response, rehabilitative services, chronic diseases, malaria and end of life care. Undoubtedly, the demands on CICPs have continued to rise with increasing life expectancy making their utility ineffec- tive (63). Despite the highlighted shortcom- ings, remote assistance including psycholog- ical support for CICPs can potentially im- prove the community’s health competence, which proves invaluable in varied circum- stances beyond the reach of formal health ser- vices and accelerate UHC. 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