ihtp, 2(2), 129-133, 2022 cc by-nc-nd 4.0 issn 2563-9269 129 pleasure and suffering in the work of palliative oncology nurses: a reflective discursive presentation ana dulce santana dos santos1, silvio arcanjo matos filho2, ricardo souza evangelista sant’ana3, norma valéria dantas de oliveira souza4, zulmerinda meira oliveira2, simone godoy3, octávio muniz da costa vargens4 1faculty santa casa of bahia, salvador, bahia, brazil; 2university state of southwest bahia, jequié, bahia, brazil; 3university of são paulo at ribeirão preto college of nursing, ribeirão preto, são paulo, brazil; 4university state of rio de janeiro. rio de janeiro, brazil corresponding author: a. d. santana dos santos (anadulcesantana@yahoo.com.br) abstract in palliative care, nursing work is characterized by the concept of suffering as nurses cope with not only the death of patients, but also challenges with interacting with families. this suffering however, if offset by the concept of pleasure, as patients find meaning in illness, pain, and in the acceptance of death as a natural process, which generates pleasure. this reflective discursive presentation is based on the theoretical framework of dejours’ psychodynamics of work and highlights the area of palliative oncology nursing as a source of suffering and pleasure. the daily life of palliative oncology nurses, subjectivity at work, and constant interactions between psychic, social, individual, and collective factors are discussed. in their clinical practice, palliative oncology nurses break with the prescribed way of engaging in care while building on various meanings of work that transforms and is also transformed. considerations related to the need for teaching and research activities to examine pleasure and suffering in palliative oncology nursing is presented. keywords job satisfaction; nursing; palliative oncology; pleasure; suffering background the concept of work is presented as the process between humans and nature whereby humans, through their own actions, mediate, regulate, and control their metabolism with nature; that is, humans transform the environment with their work and according to their needs, they are also transformed by this environment, which is a place of continuous interaction (marx, 1996). work is an ancient activity inherent to humans, occupies a considerable part of life, comprises the subjectivity of the subject, and can be a source of suffering and fatigue for some and pleasure for others (kessler et al., 2012). in this context, “work is the coordinated activity deployed by men and women in order to face that which, in a utilitarian task, cannot be obtained through the strict application of the prescribed organisation” (dejours, 2011). work is an activity aimed at meeting human needs, not only immediately but also through mediation, whether through a work instrument, which humans insert between themselves and the object they need, or through more complex, socially organized processes. work, therefore, involves two dimensions, moving beyond the mere material production of goods and services to form the very subject who performs the work (oro et al., 2019). instilling any activity performed by individual workers with some meaning in their life, beyond simply the material, intellectual and practical investment in its completion, also requires an affective investment in this activity (dejours, 2011). ihtp, 2(2), 129-133, 2022 cc by-nc-nd 4.0 issn 2563-9269 130 in the nursing context, this activity is care, which is the essence of the profession and belongs to two distinct spheres: one objective, which refers to developing techniques and procedures, and the other subjective, based on sensitivity, creativity, and intuition in caring for another being. care, therefore, requires in its relationship, the subjectivity of the nurse (souza et al., 2005). the subjectivity of nursing work is based on several essential elements, such as the way in which care was taught, the appreciation of sensitivity, intuition, “doing with”, cooperation, availability, participation, love, interaction, scientific, authenticity, involvement, shared bond, spontaneity, respect, presence, human warmth, and smiling. this collection of values/ characteristics/ details that make a difference in care is learned as prescribed work (souza et al., 2005). the work that, in its fragmented, hierarchical structure, is focused on the production of services, leads to suffering while being done. however, subjectivity is also influenced by empathy, respect for silence, receptivity, observation, and communication. nurses reveal subjectivity, changes, and renormalizations in their activities, most of them by their own initiative, and break with the prescribed organization, seeking work aimed at creativity and pleasure. as a result, actual work is generated, that is, work significantly different from the prescribed organization (kessler et al., 2012), (dejours, 2011). care is, therefore, not only an instrumental and operational work issue, but also the recognition of its purpose for human life and that this this work is not neutral, but instead supported by a set of theoreticalphilosophical ideas that guide the choices made by those who provide care (oro et al., 2019). this work involves suffering because nurses must cope with the death of patients, the difficulties of their families, and with end of life in their own daily lives. however, the paradox lies in the satisfaction gained from helping families of patients in palliative oncology, even during their suffering, find meaning in illness, pain, and in the acceptance of death as a natural process, which generates pleasure and new meanings in caring. this reflective discursive presentation is based on the theoretical framework of dejours’ psychodynamics of work. to organize the construction of the reader’s critical thinking, this paper is divided into two sections: the nursing work setting as a source of suffering and pleasure, and the proximity to the process of human finitude imposed in the nursing work setting of oncology and palliative care (dejours et al., 2011). reflective discussion setting as a source of suffering and pleasure professional practice in the hospital setting is marked by multiple requirements, including coping with pain, suffering, death, and losses, as well as unfavorable working conditions and low pay. in addition, the organization of work requires nurses to show initiative and be agile and creative, with insufficient material and structural conditions, thereby straining them and contributing to stress and burnout (oro et al., 2019). the suffering and death of a patient are difficult factors to cope with in nursing work. however, this is the setting in which nurses live daily; they fight for life, against death, and take responsibility for saving, curing, or even relieving pain, and because death is most often regarded as a failure, it is therefore difficult to accept. the work of healthcare professionals, even in places such as intensive care and basic healthcare units, does not only involve suffering. the possibility of relieving pain, saving lives, feeling useful, and working collectively, among other factors, can be a source of comfort and satisfaction, which provides pleasure and favors the psychic balance of workers (kessler et al., 2012). maintaining good relationships with colleagues is also a source of pleasure in the workplace. however, in practice, nursing teams face some difficulties in which interpersonal relationships may generate dissatisfaction. this complexity of work relationships entails several factors that allow workers to share, skillfully, the workplace with their peers. the demands imposed by the organization of work in real situations determine that nurses working in hospitals must have excellent technical-scientific knowledge and be able to cope with loss, pain, suffering and all the stress resulting from their work. such situations can trigger the burnout syndrome, which is linked to work and is caused by repetitive emotional pressures associated with being involved ihtp, 2(2), 129-133, 2022 cc by-nc-nd 4.0 issn 2563-9269 131 with people for a long period of time. the characteristics of such an occurrence in the work of nurses are linked to an organizational process influenced by fragmentation, that is, a process that follows frederick taylor’s principles of scientific management theory, with the patient as the object of work (hercos et al., 2014). several situations generate pleasure and suffering in nursing work. in the hospital, among the aspects that cause exhaustion in nurses, two factors stand out: the lack of equipment and human resources, and the suffering and death of patients (kessler et al., 2012), (oro et al., 2019), (souza et al, 2005), (hercos et al., 2014).although nurses experience suffering in this process, some researchers have indicated that their work is a source of pleasure, as job satisfaction can be found by alleviating patients’ suffering and by improving their health. in other words, despite living with situations of suffering and death, the nursing team lives through moments of success, which become gratifying and bring full satisfaction (kessler et al., 2012). the psychodynamics of work enable the contemporary understanding of subjectivity at work. studies on the psychodynamics of work support the analysis of this dialectic of feelings by emphasizing that work is never neutral in relation to health and that some elements in the organization of work trigger psychic suffering. as a result, workers may become ill (dejours et al., 2011). approaching the psychodynamics of work requires breaking with frederick taylor’s principles of scientific management theory and seeking new paradigms of work organization aimed at the integration between process and outcome, and at the decentralization of decisions, autonomy, flexibility, hierarchy, creativity, encouragement, participation, appreciation, and exercise of qualification, and, lastly, the history and accumulated experience of everyone (martins el al., 2009). impact of occupation on suffering and pleasure work in oncology, as a medical specialty spanning medium-to-high complexity healthcare levels, is stressful. workers face situations ranging from a high technological density to imminent contact with death (requiring specialized and palliative oncology care, as well as family care), which present major challenges for these professionals (hercos et al., 2014). death is linked to a professional’s feeling of failure. living with the condition of illness and death generates anxiety, which causes exhaustion in family members and professionals who live with end-of-life patients, such as those with advanced cancer, whose pain and worsening and degradation of general conditions affect everyone in contact with them (kubler-ross, 1996). when faced with the situation of death, professionals question the quality of care and sometimes feel useless for being unable to “cure” an individual. however, from this experience, a new paradigm in health has emerged; the adoption of explicitly humanitarian measures in end-of-life care whereby care is provided to not only heal but also to alleviate the symptoms and suffering of patients and their families in palliative oncology. from this perspective, all efforts are directed to enabling the understanding and acceptance of the process of dying with dignity. the perspective of the philosophy of palliative oncology, as disseminated in several countries and more recently (from the 1970s) in brazil, emphasizes quality of life and professional performance aimed at “being by their side”, providing patients with better conditions of life, facilitating the process experienced by family members and patients, “and staying together when inevitably death comes” (matos el al., 2010). several studies consider that nurses have limited knowledge in working with death because their training is focused on technical and practical actions, with little attention to the real needs of endof-life patients and their families (hercos et al., 2014), (martins et al., 2009). in addition to nurses, other healthcare professionals lack this training because this topic is rarely or almost never addressed in higher education courses (hercos et al., 2014). to face psychological suffering and avoid occupational diseases, we must ensure professional recognition of end-of-life care and promote an institutional space of discussion between the various professionals involved in such care. as a result, knowledge about the work and the evaluation of outcomes (hercos et al., 2014). will be enhanced. the method proposed by dejours uses clinical listening, which enables speaking and listening to workers’ subjective experiences in their work environment. such a process can empower workers, stimulating the work collective by changing the organization (dejours, 2011). palliative oncology nurses must find ways of coping with difficulties and find resources to ihtp, 2(2), 129-133, 2022 cc by-nc-nd 4.0 issn 2563-9269 132 minimize or solve them, although working conditions have been improving (organizations with decreased bureaucracy, service dynamics, financial recognition with wage increase and adequate workload). concomitantly, the inclusion of physical and leisure activities in the daily life of these professionals is encouraged, alongside a policy of continuing education and systematic psychological support to help them face difficulties in their daily work and invest in interpersonal relationships within healthcare institutions (hercos et al., 2014). spiritual needs, in the healthcare context, must also be considered as one of the human dimensions that directly influence how nurses tackle life and limit situations to help relieve their suffering and that of those under their care. one of the main goals of palliative oncology is to prioritize the value of the dignity of a person. this means recognizing that all persons are unique to themselves, to their families, and to their connections with the divine. therefore, we must develop strategies for promoting care to relieve the physical, mental, emotional, and spiritual symptoms of these end-of-life patients (bertachini et al., 2004). the philosophy of palliative oncology aims at providing patients and their families with the best possible quality of life. as a subjective concept, quality necessarily involves the ways in which nurses develop their actions in the context of work. although work can be a source of suffering, it can also provide experiences of pleasure whereby humans build their life and enter the world of work not only for survival, but also for personal and professional fulfillment. thus, work enables the process of individual training in its technical, political, cultural, esthetic, and artistic productivity, by involving subjectivity. we must advance the discussion on the complexity of the approach to end-of-life patients in healthcare services. this can be achieved by fostering support among professionals, promoting their participation in decision-making, and by welcoming others with positive effects on workers, who can express their subjectivity and share experiences in their relationships with others. from a dejourian perspective this essay contributes to critical-reflective thinking about palliative oncology nursing. suffering and pleasure are closely related in the daily life of palliative oncology as they result from relatively independent and complex logics, due to work subjectivity. such subjectivity lies in the interaction between psychic and social and between individual and collective factors in the production of real work, breaking with the prescribed way of doing and building a meaning of work that transforms and is also transformed (dejours et al., 2011). final considerations working with end-of-life patients brings both pleasure and suffering to the nurses who provide them with care, given the demands of the organization of their work with these patients. the health paradigm underlying caring for life indicates the need to look in another direction, caring for death, and helping patients and their families as they experience the process of death and grief. with this movement, a new concept of caring, not just healing, emerged in clinical practice, focused on the entire existence of the individual until the end of life. therefore, the work of nurses in the philosophy of palliative oncology involves the subjectivity that they learned as the prescribed work, with care seeking to provide comfort, relief from physical and emotional symptoms, and spiritual support, not only to patients but also to their families. although real work brings suffering (from working with death, and its limitations), in this approach, the focus of the health paradigm shifts from healing to caring, giving dignity to the lives of those who die; this approach also enables professionals to find pleasure in real work, from a humanistic and holistic approach, favoring professional satisfaction. this dejourian perspective confirms that suffering and pleasure are imbricated in the daily relationship with this work as the result of relatively independent and complex logics given the subjectivity of palliative oncology. the collective defense strategies adopted by workers to break with prescribed work contribute to the connection of the work team in experiencing pressure, facing the resistance to reality, and building a meaning of work that transforms and is also transformed. one of the solutions, in the field of psychodynamics of work, is teaching and research activities in healthcare settings, including undergraduate and graduate health courses aimed at the continuing education of professionals on palliative oncology. in addition, the development of socio-emotional skills and abilities favors ihtp, 2(2), 129-133, 2022 cc by-nc-nd 4.0 issn 2563-9269 133 interpersonal relationships and interdisciplinary coordination by welcoming others while listening to and exchanging subjective experiences with colleagues in their work environment. for this purpose, we must also promote actions for the professional’s self-care and for improving working conditions. references bertachini, l., pessini, l. (2004). humanization and palliative care. 2. ed. são paulo: loyola, june, p. 169,170 and 173-175. dejours, c. (2011). from psychopathology to psychodynamics of work. org. lancman selma and sznelman laert ida. 3 rd ed. rio de janeiro: fiocruz. hercos, tm., vieira, fs., oliveira, ms., buetto, ls., shimura, cmn., sonobe, hm. (2014). the work of nursing professionals in intensive care units in cancer patient care. brazilian journal of cancerology; 60(1): 51-58. kessler, ai., krug, sbf. (2012). from pleasure to suffering in nursing work: the workers' discourse. gaúcha enferm., mar; 33(1):4955. kubler-ross, e. (1996). death: final stage of evolution. translation by ana maria coelho. rio de janeiro, new age. martins, jt., robazzi, mlcc. (2009). the work of nurses in an intensive care unit: feelings of suffering. latin-am nursing journal.;17(1):52-8. marx, k. (1996) capital: critique of political economy. book i the process of capital production. sao paulo. nova cultural ltd.; 473p. matos, e., pires, dep., ramos, frs. (2010). expressions of subjectivity in the work of interdisciplinary health teams. reme rev. min.14(1): 59-67. oro, j., gelbecke, fl., sousa, vaf., scherer, mda. (2019). from the prescribed work to the real work of nursing in hospitalization units of federal university hospitals. texto contexto – enferm., (28): e20170508. souza, ml., sartor, vvb., padilha, mics., prado, ml. (2005). nursing care a theoretical approach. texto contexto – enferm., aprjun; 14(2):266-70. microsoft word july 6 copy edit martorella.docx issn 2563-9269 ihtp 308 tackling pain after cardiac surgery: it takes a village! geraldine martorella1 1college of nursing, florida state university, florida, usa corresponding author: g. martorella (gmartorella@fsu.edu) abstract there is increasing concern regarding the risk to develop chronic pain after cardiac surgery with potential detrimental effects on recovery and quality of life. with shortened hospital stays after cardiac surgery, there needs to be more emphasis placed on self-management skills and the support provided to patients and their informal caregivers during the subacute phase. a paradigm shift needs to occur on multiple levels to prevent chronic pain and opioid misuse after surgery. initiating this change means redefining the timing, recipients, and content and format of interventions. several avenues can be examined and translated in practice to promote a successful transition after cardiac surgery. keywords biopsychosocial model pain, cardiac surgery, chronic pain, pain intervention, recovery introduction cardiac surgeries became frequent surgical procedures (virani et al., 2021) with reduced length of stay in hospitals (engelman et al., 2019; son et al., 2021). however, postoperative persistent pain or chronic post-surgical pain (cpsp) after cardiac surgery, i.e. pain developing after surgery and lasting at least 3 months with other causes of pain excluded (kehlet, 2014), has become more and more of a concern and can have a considerable impact on recovery and long term clinical outcomes (guimaraes-pereira et al., 2017). of note, the relationship between chronic pain and cardiovascular disease (cvd) is currently being investigated. several studies report a higher risk of reporting cvd if suffering from chronic pain (bruehl et al., 2018; fayaz et al., 2016; oliveira et al., 2020; van hecke et al., 2017), associations between chronic pain and mortality related to cvd, and a dose-response relationship with increasing pain severity being associated with more cardiovascular outcomes (fayaz et al., 2016). following discharge from the hospital, patients are ihtp, 1(2), 308-314, 2021 cc by-nc-nd 4.0 exposed to a greater risk for cpsp and prolonged opioid use (hirji et al., 2019), as they still experience high levels of pain and need to selfmanage their pain (bjornnes et al., 2016; guimaraes-pereira et al., 2017). moreover, the risk of cpsp is usually not known by patients (oliver et al., 2016), which likely lead them to consult once the pain has already become chronic (clarke, 2016). can we prevent the chronification of pain after cardiac surgery? the answer is not that simple but with the help of a biopsychosocial model pain (gatchel et al., 2007), the most comprehensive pain framework, experts from multidisciplinary fields of research are certainly examining solutions addressing the diversity of risk factors involved in this process. among these, psychosocial protective and risk factors have gained increased attention as they are, to a certain extent, modifiable, and highly related to pain intensity and future functioning (edwards et al., 2016). for instance, it has been issn 2563-9269 ihtp 309 shown that pain cognitions, such as pain-related catastrophic thoughts, negatively influence postoperative pain intensity and activity levels, thus contributing to the development of chronic postoperative pain, as opposed to self-efficacy and optimism which would enhance recovery (weinrib et al., 2017). additionally, targeting these factors concurs with an increased interest for nonpharmacological interventions (heal initiativepain management effectiveness research network 2019; interagency pain research coordinating committee-national pain strategy overview, 2016), potentially preventing opioid overuse or misuse. for decades, non-pharmacological approaches for postoperative pain have been focusing on the use of educational interventions in the acute care setting. however, although beneficial to anxiety levels, the lack of efficacy of these interventions on pain intensity (ziehm et al., 2017), both preoperatively and postoperatively, has been consistently reported. these findings along with advances in the understanding of the development of cpsp calls for a paradigm shift. this shift may need to occur on multiple levels: timing of interventions, recipients of these interventions, and type of interventions. timing of interventions one of the most important risk factors in the development of cpsp is postoperative acute pain intensity level (katz & seltzer, 2009; schug & bruce, 2017). with people having shorter hospital stays after cardiac surgery (son et al., 2021), acute pain becomes a problem to address at home during recovery. surprisingly, a lack of studies documenting pain after discharge from hospital has been observed (park et al., 2020), thus reflecting a gap in postoperative pain management and the need to increase our efforts in understanding the experience of postoperative pain and the potential of efficacy of interventions in this phase of the postoperative continuum. moreover, although non-pharmacological interventions for postoperative pain are integrated in clinical practice guidelines (chou et al., 2016), recent studies still highlight multiple barriers in implementing such interventions in the acute care setting (martorella & mcdougall, 2021; warren et al., 2020). although efforts to implement these interventions in acute care settings must be ihtp, 1(2), 308-314, 2021 cc by-nc-nd 4.0 pursued, it seems important to offer these in the community following discharge in order to prevent a serious setback in pain management during recovery when activity levels should be gradually increasing. furthermore, clinicians involved at different timepoints in the cardiac surgical care continuum tend to express the importance of developing selfmanagement support for patients after discharge (martorella et al., 2018). indeed, according to nurses, patients can lack self-motivation, especially if living by themselves, and compliance with treatment seems challenging once discharged from hospital. in the context of discharge planning, the traditional approach to prepare cardiac surgical patients for their recovery at home has been to educate them during hospitalization or at the time of discharge. however, interventions occurring following discharge, once patients must apply what they learned, have previously shown to be more effective than self-management education during hospitalization (akbari & celik, 2015; fredericks & yau, 2013), as well as preferred by patients (lapum et al., 2016; martorella et al., 2014). of note, this recommendation is in line with the increasing emphasis placed on patientcentered subacute care and the prevention of readmission after cardiac surgery (mori et al., 2019). recipients of interventions with a fast-tracked acute care phase, the role of informal caregivers in the management of pain is becoming more and more significant. additionally, pain being a subjective phenomenon learned through life experiences and influenced by biological, psychological, and social factors (raja et al., 2020), it is logical to think that the personal pain-related experiences of family members or informal caregivers will impact the patient’s pain. it comes as no surprise that psychosocial risk and protective factors for cpsp also include significant others in relation to social support and solicitous responding (katz & seltzer, 2009). solicitous responding has been defined as “behaviors on the part of significant others that unwittingly positively and/or negatively reinforce the patient’s pain behaviors thereby increasing their frequency of occurrence” (katz & seltzer, 2009, p. 726). thus, issn 2563-9269 ihtp 310 most guidelines recommend the inclusion of family members in postoperative pain management interventions (chou et al., 2016). nevertheless, very few studies have examined caregiver-facilitated pain management interventions in hospitalized adults (yasmeen et al., 2020), as well as interventions focused on support for caregivers when transitioning at home (bjornnes et al., 2019). hence, in a systematic review of 42 studies including caregivers of cardiac surgery patients, solely 7 intervention studies were found (bjornnes et al., 2019). the findings reflected caregivers feel insecure and lack information and support during the recovery at home (bjornnes et al., 2019). yet, interventions educating caregivers and involving them in pain management seem promising in contributing to the reduction of pain intensity as well as opioid consumption (rahmani et al., 2020; yasmeen et al., 2020) and could even promote the use of positive pain coping strategies (grondin et al., 2014). type of interventions given the increasing value of the subacute phase, the importance of patients’ self-management skills cannot be overstressed. in view of the lack of efficacy of educational interventions on pain management, it is legitimate to wonder if interventions’ targets should be revaluated as well as their active ingredients. moreover, pain is generally not a big concern for cardiac surgical patients (cogan et al., 2014; martorella et al., 2014) who express more informational needs regarding other types of postoperative complications (veronovici et al., 2014). this perception is related to core beliefs and attitudes that cause the normalization of pain and reluctance to take any actions. advances on the importance of psychosocial risk and protective factors for pain have emphasized the relevance of cognitive and behavioral approaches, especially after discharge, when patients are trying to return to some normalcy. cognitive behavioral therapy (cbt) and its variations, such as acceptance commitment therapy (act) and mindfulness-based cognitive therapy (mbct), are suited to influence cpsp risk and protective factors as they target painrelated cognitions and behaviors, i.e. the ihtp, 1(2), 308-314, 2021 cc by-nc-nd 4.0 foundation for individual self-management skills (weinrib et al., 2017). hence, we may also want to investigate the impact of tailoring the content of interventions according to the individual profile of risk and protective factors. for instance, some patients may not present pain-related catastrophic thoughts and not require cognitive restructuring. this would mean that a standard cbt approach may not be relevant for everyone. a preliminary screening of these psychosocial risk and protective factors could help determine the content of the intervention. content matching is an important tailoring ingredient that is frequently missing, even in interventions addressing chronic pain (martorella et al., 2017). of note, the evaluation of these factors may need to be done several times along the continuum, e.g. before and after surgery as their predictive power may change over time or depending on the type of surgery (weinrib et al., 2017). as an example, while pain catastrophizing may not be present preoperatively in cardiac surgical patients who are more focused on survival, it may be present postoperatively due to the pain related to their sternotomy. format of interventions however, implementing these cbt-based interventions following discharge may present several challenges in the context of a surgical population, such as the cardiac surgical population, and may require modifying their format. indeed, for instance, they usually require weekly group meetings for 8-12 weeks, which is rather taxing during recovery after a major surgery and not always necessary if pain is not yet chronic and disability has not surfaced. these interventions may require adaptations to better fit the recovery period following hospital discharge and the prevention of cpsp. several studies have successfully tested brief versions of these approaches with surgical populations (mcclintock et al., 2019; weinrib et al., 2017). lastly, another adaptation to explore is a webbased or online format of interventions, which has previously shown benefits in the perioperative continuum of care (van der meij et al., 2016). as an example, a mobile health or social media-based ihtp, 1(2), 308-314, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 311 application accessible from smartphones and tablets seems to be a promising and convenient tool to incorporate into cardiac rehabilitation, particularly for underserved populations (dorje et al., 2019; liu et al., 2020). this format allows instant guidance and feedback this is patientcentered, i.e., tailored to individual needs in terms of content, timing, and dosage. furthermore, integrating messages from a clinician creates a sense of connectedness and personalized consultation that could enhance motivation and engagement (dorje et al., 2019; martorella et al., 2018). additionally, according to patient preferences, the intervention could be hybrid with the combination of a mobile application and brief check-ins with a coach by telephone. moreover, although embryonic, the use of technologies is also emerging as a tool to facilitate accessibility to interventions including informal caregivers (shaffer et al., 2020) and the social-media based application seems like a convenient tool to integrate caregivers. conclusion although providing support beyond discharge as well as involving caregivers have previously been suggested in studies and guidelines, these recommendations have not been reflected in research and practice. today, with shortened hospital stays after cardiac surgery and the known risk of cpsp and opioid misuse, we have a responsibility to initiate change by increasing awareness regarding cpsp and providing support in the community. managing pain after surgery does take a village! references akbari, m., & celik, s. s. (2015, jul-aug). the effects of discharge training and counseling on post-discharge problems in patients undergoing coronary artery bypass graft surgery. iran journal of nursing and midwifery research, 20(4), 442-449. https://doi.org/10.4103/17359066.161007 bjornnes, a. k., moons, p., parry, m., halvorsen, s., tonnessen, t., & lie, i. (2019, nov 11). experiences of informal caregivers after cardiac surgery: a systematic integrated review of qualitative and quantitative studies. bmj open, 9(11), e032751. https://doi.org/10.1136/bmjopen-2019032751 bjornnes, a. k., parry, m., lie, i., fagerland, m. w., watt-watson, j., rustoen, t., stubhaug, a., & leegaard, m. (2016, oct). pain experiences of men and women after cardiac surgery. journal of clinical nursing, 25(19-20), 3058-3068. https://doi.org/10.1111/jocn.13329 bruehl, s., olsen, r. b., tronstad, c., sevre, k., burns, j. w., schirmer, h., nielsen, c. s., stubhaug, a., & rosseland, l. a. (2018, jan). chronic pain-related changes in cardiovascular regulation and impact on comorbid hypertension in a general population: the tromso study. pain, 159(1), 119-127. https://doi.org/10.1097/j.pain.000000000 0001070 chou, r., gordon, d. b., de leon-casasola, o. a., rosenberg, j. m., bickler, s., brennan, t., carter, t., cassidy, c. l., chittenden, e. h., degenhardt, e., griffith, s., manworren, r., mccarberg, b., montgomery, r., murphy, j., perkal, m. f., suresh, s., sluka, k., strassels, s., thirlby, r., viscusi, e., walco, g. a., warner, l., weisman, s. j., & wu, c. l. (2016, feb). management of postoperative pain: a clinical practice guideline from: the american pain society, the american society of regional anesthesia and pain medicine, and the american society of anesthesiologists' committee on regional anesthesia, executive committee, and administrative council. journal of pain, 17(2), 131-157. https://doi.org/10.1016/j.jpain.2015.12.0 08 clarke, h. (2016). transitional pain medicine: novel pharmacological treatments for the management of moderate to severe postsurgical pain. expert review of clinical pharmacology, 9(3), 345-349. https://doi.org/10.1586/17512433.2016.1 129896 edwards, r. r., dworkin, r. h., sullivan, m. d., turk, d. c., & wasan, a. d. (2016, sep). the role of psychosocial processes in the issn 2563-9269 ihtp 312 development and maintenance of chronic pain. journal of pain, 17(9 suppl), t70-92. https://doi.org/10.1016/j.jpain.2016.01.0 01 engelman, d. t., ben ali, w., williams, j. b., perrault, l. p., reddy, v. s., arora, r. c., roselli, e. e., khoynezhad, a., gerdisch, m., levy, j. h., lobdell, k., fletcher, n., kirsch, m., nelson, g., engelman, r. m., gregory, a. j., & boyle, e. m. (2019, aug 1). guidelines for perioperative care in cardiac surgery: enhanced recovery after surgery society recommendations. jama surgery, 154(8), 755-766. https://doi.org/10.1001/jamasurg.2019.11 53 fayaz, a., ayis, s., panesar, s. s., langford, r. m., & donaldson, l. j. (2016, oct). assessing the relationship between chronic pain and cardiovascular disease: a systematic review and meta-analysis. scandinavian journal of pain, 13, 76-90. https://doi.org/10.1016/j.sjpain.2016.06.0 05 fredericks, s., & yau, t. (2013, nov). educational intervention reduces complications and rehospitalizations after heart surgery. western journal of nursing research, 35(10), 1251-1265. https://doi.org/10.1177/01939459134900 81 gatchel, r. j., peng, y. b., peters, m. l., fuchs, p. n., & turk, d. c. (2007, jul). the biopsychosocial approach to chronic pain: scientific advances and future directions. psychological bulletin, 133(4), 581-624. https://doi.org/10.1037/00332909.133.4.581 grondin, f., bourgault, p., & bolduc, n. (2014, mar). intervention focused on the patient and family for better postoperative pain relief. pain management nursing, 15(1), 76-86. https://doi.org/10.1016/j.pmn.2012.06.00 6 guimaraes-pereira, l., reis, p., abelha, f., azevedo, l. f., & castro-lopes, j. m. (2017, oct). persistent postoperative pain after cardiac surgery: a systematic review ihtp, 1(2), 308-314, 2021 cc by-nc-nd 4.0 with meta-analysis regarding incidence and pain intensity. pain, 158(10), 18691885. https://doi.org/10.1097/j.pain.000000000 0000997 heal initiative-pain management effectiveness research network (2019). national institutes of health. retrieved november from https://heal.nih.gov/research/clinicalresearch/pain-management-research hirji, s. a., landino, s., cote, c., lee, j., orhurhu, v., shah, r. m., mcgurk, s., kaneko, t., shekar, p., & pelletier, m. p. (2019, feb). chronic opioid use after coronary bypass surgery. journal of cardiac surgery, 34(2), 67-73. https://doi.org/10.1111/jocs.13981 interagency pain research coordinating committee-national pain strategy overview. (2016). national institutes of health. https://www.iprcc.nih.gov/national-painstrategy/overview katz, j., & seltzer, z. (2009, 5/2009). transition from acute to chronic postsurgical pain: risk factors and protective factors. expert. review neurotherapy, 9(5), 723-744. https://doi.org/10.1586/ern.09.20 [doi] (not in file) kehlet, h., edwards, rr, brennan, t. (2014). persistent postoperative pain: pathogenic mechanisms and preventive strategies. in s. raja, sommer, c, (ed.), pain 2014: refresher courses (pp. 113-123). international association for the study of pain (iasp) press. lapum, j. l., fredericks, s., liu, l., yau, t. m., retta, b., jones, v. m., & hume, s. (2016, jul-aug). facilitators and barriers of heart surgery discharge: patients' and nurses' narrative accounts. journal of cardiovascular nursing, 31(4), 350-356. https://doi.org/10.1097/jcn.0000000000 000253 martorella, g., boitor, m., berube, m., fredericks, s., le may, s., & gelinas, c. (2017, nov 10). tailored web-based interventions for pain: systematic review and metaanalysis. journal of medical internet resesearch, 19(11), e385. https://doi.org/10.2196/jmir.8826 ihtp, 1(2), 308-314, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 313 martorella, g., gelinas, c., & purden, m. (2014). acceptability of a web-based and tailored intervention for the self-management of pain after cardiac surgery: the perception of women and men. jmir research protocols, 3(4), e63. https://doi.org/10.2196/resprot.3175 martorella, g., graven, l., schluck, g., berube, m., & gelinas, c. (2018). nurses’ perception of a tailored web-based intervention for the self-management of pain after cardiac surgery. sage open nursing, 4, 1-14. https://doi.org/10.1177/23779608188062 70 martorella, g., & mcdougall, g. j., jr. (2021, feb). barriers and facilitators to the prevention of chronic pain in the subacute phase after cardiac surgery. pain management nursing, 22(1), 28-35. https://doi.org/10.1016/j.pmn.2020.09.00 4 mcclintock, a. s., mccarrick, s. m., garland, e. l., zeidan, f., & zgierska, a. e. (2019, mar). brief mindfulness-based interventions for acute and chronic pain: a systematic review. journal of alternative complementary medicine, 25(3), 265-278. https://doi.org/10.1089/acm.2018.0351 mori, m., angraal, s., chaudhry, s. i., suter, l. g., geirsson, a., wallach, j. d., & krumholz, h. m. (2019, nov 5). characterizing patient-centered postoperative recovery after adult cardiac surgery: a systematic review. journal of the american heart association, 8(21), e013546. https://doi.org/10.1161/jaha.119.01354 6 oliveira, c. b., maher, c. g., franco, m. r., kamper, s. j., williams, c. m., silva, f. g., & pinto, r. z. (2020, jun 1). cooccurrence of chronic musculoskeletal pain and cardiovascular diseases: a systematic review with meta-analysis. pain medicine, 21(6), 1106-1121. https://doi.org/10.1093/pm/pnz217 oliver, j. b., kashef, k., bader, a. m., & correll, d. j. (2016, nov). a survey of patients' understanding and expectations of persistent postsurgical pain in a preoperative testing center. journal of clinical anesthesia, 34, 494-501. https://doi.org/10.1016/j.jclinane.2016.06 .008 rahmani, m., bahraminejad, n., & rezaei, m. (2020, jan-feb). the effect of familyoriented educational intervention on postoperative pain after orthopedic surgery. iranian journal of nursing midwifery research, 25(1), 47-52. https://doi.org/10.4103/ijnmr.ijnmr_127 _18 raja, s. n., carr, d. b., cohen, m., finnerup, n. b., flor, h., gibson, s., keefe, f. j., mogil, j. s., ringkamp, m., sluka, k. a., song, x. j., stevens, b., sullivan, m. d., tutelman, p. r., ushida, t., & vader, k. (2020, sep 1). the revised international association for the study of pain definition of pain: concepts, challenges, and compromises. pain, 161(9), 1976-1982. https://doi.org/10.1097/j.pain.000000000 0001939 schug, s. a., & bruce, j. (2017, nov). risk stratification for the development of chronic postsurgical pain. pain reports, 2(6), e627. https://doi.org/10.1097/pr9.0000000000 000627 shaffer, k. m., tigershtrom, a., badr, h., benvengo, s., hernandez, m., & ritterband, l. m. (2020, mar 4). dyadic psychosocial ehealth interventions: systematic scoping review. journal of medical internet research, 22(3), e15509. https://doi.org/10.2196/15509 son, a. y., karim, a. s., fiehler, m., andrei, a. c., vassallo, p., churyla, a., pham, d. t., mccarthy, p. m., & chris malaisrie, s. (2021, apr). outcomes of 3-day discharge after elective cardiac surgery. journal of cardiac surgery, 36(4), 1441-1447. https://doi.org/10.1111/jocs.15404 van der meij, e., anema, j. r., otten, r. h., huirne, j. a., & schaafsma, f. g. (2016). the effect of perioperative e-health interventions on the postoperative course: a systematic review of randomised and nonrandomised controlled trials. plos one, 11(7), e0158612. ihtp, 1(2), 308-314, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 314 https://doi.org/10.1371/journal.pone.015 8612 van hecke, o., hocking, l. j., torrance, n., campbell, a., padmanabhan, s., porteous, d. j., mcintosh, a. m., burri, a. v., tanaka, h., williams, f. m., & smith, b. h. (2017). chronic pain, depression and cardiovascular disease linked through a shared genetic predisposition: analysis of a family-based cohort and twin study. plos one, 12(2), e0170653. https://doi.org/10.1371/journal.pone.017 0653 virani, s. s., alonso, a., aparicio, h. j., benjamin, e. j., bittencourt, m. s., callaway, c. w., carson, a. p., chamberlain, a. m., cheng, s., delling, f. n., elkind, m. s. v., evenson, k. r., ferguson, j. f., gupta, d. k., khan, s. s., kissela, b. m., knutson, k. l., lee, c. d., lewis, t. t., liu, j., loop, m. s., lutsey, p. l., ma, j., mackey, j., martin, s. s., matchar, d. b., mussolino, m. e., navaneethan, s. d., perak, a. m., roth, g. a., samad, z., satou, g. m., schroeder, e. b., shah, s. h., shay, c. m., stokes, a., vanwagner, l. b., wang, n. y., tsao, c. w., american heart association council on, e., prevention statistics, c., & stroke statistics, s. (2021, feb 23). heart disease and stroke statistics-2021 update: a report from the american heart association. circulation, 143(8), e254-e743. https://doi.org/10.1161/cir.0000000000 000950 warren, c., jaisankar, p., saneski, e., tenberg, a., & scala, e. (2020, dec). understanding barriers and facilitators to nonpharmacological pain management on adult inpatient units. pain management nursing, 21(6), 480-487. https://doi.org/10.1016/j.pmn.2020.06.00 6 weinrib, a. z., azam, m. a., birnie, k. a., burns, l. c., clarke, h., & katz, j. (2017, nov). the psychology of chronic post-surgical pain: new frontiers in risk factor identification, prevention and management. british journal of pain, 11(4), 169-177. https://doi.org/10.1177/20494637177206 36 yasmeen, i., krewulak, k. d., zhang, c., stelfox, h. t., & fiest, k. m. (2020, nov). the effect of caregiver-facilitated pain management interventions in hospitalized patients on patient, caregiver, provider, and health system outcomes: a systematic review. journal of pain symptom management, 60(5), 1034-1046 e1047. https://doi.org/10.1016/j.jpainsymman.20 20.06.030 ziehm, s., rosendahl, j., barth, j., strauss, b. m., mehnert, a., & koranyi, s. (2017, jul 12). psychological interventions for acute pain after open heart surgery. cochrane database of systematic reviews, 7, cd009984. https://doi.org/10.1002/14651858.cd009 984.pub3 ihtp, 2(1), 26-34, 2022 cc by-nc-nd 4.0 issn 2563-9269 26 the impact of covid-19 on nursing education in sri lanka: a reflective analysis sarath rathnayake1, thilanka jagoda2, damayanthi dassanayake1, nishadi dharmarathna3, chandrani m. herath4, samath d. dharmaratne5 1department of nursing, faculty of allied health sciences, university of peradeniya, peradeniya, sri lanka., sri lanka, 2department of nursing and midwifery, faculty of allied health sciences, university of sri jayewardenepura, gangodawila, nugegoda, sri lanka, 3 department of nursing, kaatsu international university, colombo, sri lanka,4 department of clinical nursing, faculty of nursing, university of colombo, sri lanka, 5department of community medicine, faculty of medicine, university of peradeniya, peradeniya, sri lanka corresponding author: s. rathnayake (sarathr@pdn.ac.lk) abstract in the wake of covid-19, nursing education has shifted to elearning from traditional methods. this reflective analysis addresses the impact of covid-19 on the development of competencies among nursing students in sri lanka. four themes were identified: the direct impact of the covid-19 pandemic on nursing education; the role of elearning in nursing education during the covid-19 pandemic; the acquisition of nursing skills and competencies; and implications for education, research, and policy. virtual online learning has replaced traditional teaching and learning. acquiring clinical skills and competencies and completing the practicum are challenging. since nurses are in high demand; nursing education needs to be accelerated and modified. a change in policies related to education and research is essential for developing countries. blended learning, which includes more simulation teaching, is recommended. keywords covid-19, developing country, elearning, nursing education, sri lanka introduction covid-19 has a significant impact on the developing world. by mid-2021, covid-19 cases had increased substantially in south asian countries. during the covid-19 pandemic, special guidelines were implemented to minimize its consequences, and many south asian countries experienced lockdown, affecting entire regions or countries. as a result, many educational institutions, including universities, were closed. sri lanka is one of the countries in south asia experiencing the third wave of covid-19. as in other countries, the government of sri lanka closed all schools and educational institutions to improve social distance. considering the current shortage of nurses, closing universities and other nursing educational institutions negatively impacted nursing education in the country. according to the international council of nurses (icn) (2021a), 73% of its member national nursing associations reported disruptions in nursing education in 2020. today, the impact of covid-19 has increased or continued in many developed and underdeveloped countries; consequently, the continuation of nursing education has become more challenging (agu et al., 2021). nursing education consists of classroom learning with mandatory skill laboratory practice (morgan, 2006) and clinical practice (jamshidi et al, 2016). skill laboratory practice helps nursing students to integrate theory to practice before their first clinical placement (morgan, 2006). as nursing is a highly skills-based profession, clinical education is mandatory in preparing nursing students for their future roles (jamshidi et al., 2016; jonsén et al., 2013). many nursing educational ihtp, 2(1), 26-34, 2022 cc by-nc-nd 4.0 issn 2563-9269 27 institutions in sri lanka have closed their physical classes and lab practices and halted clinical placements due to the covid-19 pandemic. consequently, elearning has been integrated into nursing education. technology, particularly elearning plays a vital role in education when students are physically remote from the classroom, and online education has become a global phenomenon considering the covid-19 pandemic (rapanta et al., 2020). educators describe online learning in a variety of ways, such as elearning (digital learning), web-based learning, online learning, mlearning (mobile learning) and dlearning (digital learning) (basak et al., 2018; saiyad et al., 2020). these strategies are practiced in different contexts, including asynchronized learning (e.g., sharing of recorded lectures), synchronized learning (e.g., live video interactions) and blended learning (taha et al., 2020). literature suggests these technologies assist in shaping the cognitive, affective, and psychomotor skills of students (cooper & higgins, 2015). while many technology-based interventions have been introduced to nursing education (icn, 2021a), the sustainability and effectiveness of elearning interventions have been challenged, particularly in low and middle-income countries (agu et al., 2021). despite the applicability of new technologies in classroom teaching; skill lab practice, clinical training, and student assessment in nursing education have become difficult to actualize as these forms of teaching require compulsory student attendance. purpose the purpose of this reflective analysis was to describe the impact of covid-19 on the development of competencies among nursing students in sri lanka. methods the authors of this paper participated in an initial discussion. the team included three lecturers in nursing from national universities (sr, dd, cmh), one lecturer (nd) from a private university, one nursing tutor (tj) from a diploma school of nursing attached to the ministry of health sri lanka (currently, a lecturer in nursing from one of the national universities in sri lanka) and professor in community medicine (sd). sr led the discussion. the authors agreed to provide a written statement on the current situation of nursing education in their institutions, as well as their suggestions for further improvement. a questionnaire guide was created to assist with collecting information about the impact of covid-19 on nursing education (table 1). all authors except for sd, answered each item on the questionnaire guide. each response script was read and re-read by two authors (sr and tj) and basic categories and themes (thematic map) (table 2) were identified. consensus was achieved among two authors (sr and tj), and it was shared among other authors for any comments/approval. agreed that the designed thematic map was comprehensive; therefore, our discussion focused on four themes. ethical approval was not obtained as this was not a research study. results from reflective analysis there are four main themes to our discussion: (1) the direct impact of the covid-19 pandemic on nursing education; (2) the role of elearning in nursing education during the covid-19; (3) the acquisition of nursing skills and competencies; and (4) implications for education, research, and policy. discussion direct impact of the covid-19 pandemic on nursing education worldwide, many countries have devised their own guidelines and measures to minimize the spread of the covid-19 infection, including those imposed by the world health organization (allain-dupré et al., 2020). as in many other countries, schools, and other educational institutions in sri lanka, including universities, were closed (wickramaarachchi et al., 2020). closing neis and other measures and guidelines imposed to control covid-19 infection directly affected nursing education. the impact include disrupted classroom teaching, skill lab practice and clinical learning, delayed research projects, cancellation of examinations, delayed admission, and delayed students’ graduation. with the increased demand for nurses during the covid19 pandemic, interrupted nursing education directly affected producing an adequate number of nurses for the workforce. ihtp, 2(1), 26-34, 2022 cc by-nc-nd 4.0 issn 2563-9269 28 role of elearning in nursing education during covid-19 pandemic in sri lanka, before the covid-19 pandemic, education in nursing was conducted entirely face-toface, incorporating skill laboratory teaching and clinical practice. with the presence of the covid-19 pandemic, this traditional method moved to online, helping students find solutions for direct classroom teaching. nurse educators have incorporated different elearning platforms in their practice, such as zoom, microsoft team, learning management systems, emails, and whatsapp. however, it was difficult for nurse educators to complete nursing courses online because the systems failed to provide sufficient laboratory and clinical practice support. although students were placed in clinical settings from time to time, the placements were not sufficient to complete their clinical learning. simulation can be identified as one option for clinical training (mehdipour –rabori et al., 2021), its initiation is challenging, particularly for developing countries like sri lanka due to inadequate facilities, training, and lack of exposure by nurse educators. we identified several strengths concerning the initiation of elearning in nursing education. these strengths include ehealth literacy of students and educators; adaptation and dedication of both educators and students for ad hoc strategies at the beginning; assistance from internet providers in the form of providing low-cost services; availability of personal resources among students and educators and support received from the government and educational administrators. despite the above strengths, the challenges associated with transforming face-to-face learning models to elearning approaches have been identified. a similar situation can be found in other developing countries, including south asian countries such as india, bangladesh, and nepal (rizvi & nabi, 2021; shahriar et al., 2021; singh & singh, 2020). bangladesh researchers have identified these challenges as “common developing country syndrome” (shahriar et al., 2021). highlighted challenges in sri lanka include limited facilities in educational institutions; social inequality related to online learning, including limited devices and internet connections; non-availability of proper technological training for teachers and students; acceptance by teachers and students, sustainability of the elearning, economic barriers, and establishment of these interventions without feasibility studies. many neis, particularly diploma schools, have student batches with many students; however, there were limited facilities for elearning, including equipment, internet access and paid user-friendly learning applications or systems. sustainability is mainly challenged by the motivation of nurse educators, connection issues and related costs for students. although synchronized methods such as live video interactions are more effective, asynchronous methods also have been incorporated due to challenges posed by resources, connection issues, and availability. in addition, the advantages, and disadvantages of online learning in nursing education were identified. these advantages include continuity of education during the covid-19 pandemic without the risk of getting infection; maintaining teacher-learner relationship during the lockdown; the convenience of learning irrespective of boundaries such as time, place, or speed of learning; improving self-directed learning; and cost-effectiveness for the institute. disadvantages include wasting resources, including time and money; lack of face-to-face social interaction; lack of integration of theory and clinical experiences; difficulty in addressing individualised needs of students; anxieties related to new methods for teachers and students; low satisfaction, difficulty in achieving higher learning outcomes, and sustainability. acquisition of nursing skills and competencies nursing education aims to prepare the future nursing workforce with knowledge, skills, and attitudes (world health organization, 2021) to promote health, prevent illness, and provide care for ill, disabled and dying people (icn, 2021b). nursing education, therefore, places a high emphasis on clinical skills and competencies, which are both complex and challenging components (spence et., 2019). icn (2021a) reports that clinical placements have been limited to nursing students to conserve personal protective equipment and prevent exposure to covid-19. during the covid-19 pandemic, elearning strategies enabled nursing students in sri lanka to acquire theoretical knowledge. however, the acquisition of clinical skills and competencies was ihtp, 2(1), 26-34, 2022 cc by-nc-nd 4.0 issn 2563-9269 29 significantly hindered. several factors contributed to the disruption of clinical competencies of basic nursing students during the covid-19 pandemic, for example, lack of opportunities to integrate knowledge, skills, and attitudes, particularly lack of skill lab and clinical training parallel to classroom learning: lack of bed-side teaching, weak assessment and evaluation of clinical competencies, and lack of attitude and soft skill development. this situation adversely affects the development of a skilled nursing workforce to meet future demands, leading to poor patient outcomes. traditionally, many clinical modules are assessed by clinical examinations and this approach is the widely accepted method for clinical evaluation of nursing degree programs in the country. although some institutions incorporated objective structured practical examinations (ospe) in the skill laboratories with standardised patients, the acceptability and effectiveness are not explored. additionally, a lack of competencies may lead to developing negative consequences among future nurses (dewart et al., 2020), for example, frustrations, less job satisfaction, stress, burnout and bullying by colleagues and superiors. in addition to basic nursing training programs, few neis under the ministry of health conduct diploma courses for nurses to gain competencies in special contexts, for example, pediatric nursing, maternity nursing, psychiatric nursing, community psychiatric nursing, enterostomal therapy, operation theatre nursing, intensive care nursing, pain management and emergency nursing. by cancelling these diploma courses during the covid-19, nurses are prevented from acquiring new competencies and becoming specialists in the profession. implications for education, research, and policy at present, covid-19 is out of control and cannot be predicted when it will be contained. nursing education has faced several challenges, mainly the breakdown of classroom teaching, clinical placements, and uncertainty about future education; therefore, strategies must be carefully planned and implemented. notably, elearning is a novel experience for educators and students in developing countries (oyedotun, 2020), and sri lanka is not an exception. to sustain and maintain standards of nursing education considering a covid-19 pandemic, comprehensive and collaborative approaches for education, research, and policymaking are essential. implications for education mcgarry et al. (2015) have reported that studentcentric curricula are based on engagement, flexibility, active learning, and adaptability. therefore, it is essential to upgrade the competencies of nurse educators to face challenges during the paradigm shift in nursing education. several suggestions are identified, and one of the major concerns is revising or modifying the current curricula. modifying learning outcomes, adding modules of health systems and emerging technologies in healthcare, revising assessment methods, and incorporating simulation and blended learning approaches are recommended. from the authors' point, nurse educators need to pay careful attention to maintaining active learning, sustainability and integrating all learning domains into technology-enabled distance learning. the preparation of nurse educators, including improving the acceptance of technology and new methods for advanced elearning, is imperative. additional preparation from teachers, for example, the preparation of pre-recorded videos, are highlighted. enhancing eliteracy should be incorporated into the continuous professional development programme of nurse educators. keeping a backup plan helps to ensure the smooth operation of programs during service interruptions and the absence of teachers. moreover, maintaining mental well-being while the work-life balance of teachers needs to be prioritized. with the covid-19 pandemic, globally, nursing education has adapted to incorporate different elearning strategies to address cognitive, psychomotor, and affective aspects of the next generation of nurses. considering the lack of clinical exposure, blended learning and simulation learning provide an opportunity for deep learning. with blended learning methods, face-to-face teaching and learning strategies can be combined with technological innovations (mcgarry et al., 2015). to effectively manage these activities, nurse educators can use learning management systems. for example, the project-based learning (pbl) methodology through flipped learning classrooms is viable for blended learning (chua & islam, 2020). in addition, simulation sessions, especially debriefing phases, can help students to develop soft skills and attitudes. ihtp, 2(1), 26-34, 2022 cc by-nc-nd 4.0 issn 2563-9269 30 despite the costly high fidelity or virtual simulations (brown & tortorella, 2020), low-cost simulation modalities can be used in developing countries, for example, standardised patients, low fidelity mannequin-based simulation, computer-based simulation, and role-plays (weberg et al., 2021). implications for research the heavy teaching load faced by nurse educators worldwide and the limited access to research settings have hindered the conducting of successful research during the covid-19 pandemic (im et al., 2021). research on the transformation of nursing education is essential across the globe during the post-pandemic period (im et al., 2021). evidence-based and culturally accepted practices are crucial in establishing the suggested implications of nursing education in developing countries like sri lanka. for example, research priorities must include need assessment, feasibility and cost analysis, assessment of the acceptance and effectiveness of new teaching and learning approaches, and mental well-being of teachers and students. moreover, policy-driven research, for example, the development of national frameworks to maintain sustainability in nursing education, is highlighted. implications for policymaking policymakers in developing countries like sri lanka should support nursing education and research. the policy priorities from the national level to institutional level include the need for identifying nursing education as a national priority, evidence-based transforming of traditional education strategies and ad hoc strategies, budgeting and improving infrastructure and other resources, recruiting and retaining of nursing students and educators, capacity building of nurse educators, rescheduling flexible clinical timeframes, establishing clinical mentorship and essential internships for nurse graduates and work-life balance during the covid-19 crisis. the sri lankan nursing education system still does not offer clinical mentorship and compulsory internship, which should be a top priority in national nursing education policies to prepare students for the nursing profession effectively. the need for effective mentoring for nursing students is highlighted during the covid-19 pandemic. recruitment and retention are supported by safe working conditions, recognition, and respect (chamanga et al., 2020). im et al. (2021) have explored implications for policy changes in nursing education based on a study across five regions of the world. these policy suggestions are also applicable to developing countries like sri lanka. these include the provision of human resources and administrative and technological support; provision of targeted support, for example, pilot grants for promoting nursing education in selected areas; investment in nursing priorities such as mental health issues amidst the pandemic; initiation of research, such as changes in curricula and providing grants for researchers; opening to new technologies and innovations for future usage; developing new care models and devices for nursing care, and continuity of research to enhance the visibility and image of nursing during the covid-19 pandemic. limitations the paper contains reflections and opinions limited to five nurse educators in sri lanka. conclusion covid-19 poses a threat to nursing education worldwide, including in developing countries. based on the reflections of nurse educators in sri lanka and literature, we discussed nursing education during the covid-19 pandemic from the eye of a developing country in south asia (i.e., sri lanka). additionally, we provided several recommendations for nursing education in the sri lankan context. the nurse educators in sri lanka have continued nursing education with ad hoc plans to transform face-to-face education into elearning strategies. amidst the covid-19 pandemic, elearning strengthens the cognitive component of education; however, psychomotor, and affective domains are underaddressed. therefore, educational, research and policy implications are recommended to prepare the future nursing workforce. revision of curricula is essential to overcome the challenges of the covid-19 pandemic. modifications of learning outcomes, changes in teaching-learning strategies and changes in evaluation methods need to be incorporated. blended learning activities, for example, projectbased learning, are suggested to achieve higher-level learning outcomes. developing countries can utilise ihtp, 2(1), 26-34, 2022 cc by-nc-nd 4.0 issn 2563-9269 31 low-cost simulation practices to enhance the clinical skills and competencies, and attitudes of nurse professionals. it is essential to conduct research studies to identify changes required for current curricula and examine their effectiveness. incorporating feasibility studies and cost analysis into research when planning changes in nursing education are highlighted. references agu, c. f., stewart, j., mcfarlane‐stewart, n., & rae, t. (2021). covid‐19 pandemic effects on nursing education: looking through the lens of a developing country. international nursing review, 68(2), 153-158. allain-dupré, d., chatry, i., michalun, v., & moisio, a. (2020). the territorial impact of covid-19: managing the crisis across levels of government. organisation for economiccooperation and development. basak, s. k., wotto, m., & bélanger, p. (2018). elearning, m-learning and d-learning: conceptual definition and comparative analysis. e-learning and digital media, 15(4), 191–216. https://doi.org/10.1177/204275301878518 0 brown, w. j., & tortorella, r. a. w. (2020). hybrid medical simulation: a systematic literature review. smart learning environments, 7(1), 1–16. https://doi.org/10.1186/s40561-02000127-6/tables/3 chamanga, e., dyson, j., loke, j., & mckeown, e. (2020). factors influencing the recruitment and retention of registered nurses in adult community nursing services: an integrative literature review. primary health care research & development, 21. https://doi.org/10.1017/s14634236200003 53 chua, k. j., & islam, m. r. (2020). the hybrid projectbased learning–flipped classroom: a design project module redesigned to foster learning and engagement: https://doi.org/10.1177/0306419019838335, 49(4), 289–315. https://doi.org/10.1177/0306419019838335 cooper, d., & higgins, s. (2015). the effectiveness of online instructional videos in the acquisition and demonstration of cognitive, affective, and psychomotor rehabilitation skills. british journal of educational technology, 46(4), 768779. dewart, g., corcoran, l., thirsk, l., & petrovic, k. (2020). nursing education in a pandemic: academic challenges in response to covid19. nurse education today, 92, 104471. https://doi.org/10.1016/j.nedt.2020.10447 1 im, e., sakashita, r., oh, e. g., tsai, h., chen, c., lin, c., & mccauley, l. (2021). covid-19 and nursing research across five countries/regions: commonalities and recommendations. research in nursing & health. https://doi.org/10.1002/nur.22171 international council of nurses. (2021a). international council of nurses policy brief: nursing education and the emerging nursing workforce in covid-19 pandemic. retrieved from https://www.icn.ch/sites/default/files/inlin efiles/icn%20policy%20brief_nursing%20ed ucation.pdf (accessed 04.09.2021) international council of nurses. (2021b). nursing definitions | icn international council of nurses. retrieved september 4, 2021, from https://www.icn.ch/nursing-policy/nursingdefinitions (accessed 05.09.2021) jamshidi, n., molazem, z., sharif, f., torabizadeh, c., & najafi kalyani, m. (2016). the challenges of nursing students in the clinical learning environment: a qualitative study. the scientific world journal, 2016. jonsén, e., melender, h.-l., & hilli, y. (2013). finnish and swedish nursing students’ experiences of their first clinical practice placement: a qualitative study. nurse education today, 33(3), 297-302. mcgarry, b. j., theobald, k., lewis, p. a., & coyer, f. (2015). flexible learning design in curriculum delivery promotes student engagement and develops metacognitive learners: an integrated review. nurse education today, 35(9), 966–973. https://doi.org/10.1016/j.nedt.2015.06.00 9 mehdipour –rabori, r., bagherian, b., & nematollahi, m. (2021). simulation-based mastery improves nursing skills in bsc nursing students: a quasiexperimental study. bmc nursing, 20(1), 1–7. https://doi.org/10.1177/2042753018785180 https://doi.org/10.1177/2042753018785180 https://doi.org/10.1017/s1463423620000353 https://doi.org/10.1017/s1463423620000353 https://doi.org/10.1016/j.nedt.2020.104471 https://doi.org/10.1016/j.nedt.2020.104471 about:blank about:blank about:blank about:blank https://doi.org/10.1016/j.nedt.2015.06.009 https://doi.org/10.1016/j.nedt.2015.06.009 ihtp, 2(1), 26-34, 2022 cc by-nc-nd 4.0 issn 2563-9269 32 https://doi.org/10.1186/s12912-020-00532-9 morgan, r. (2006). using clinical skills laboratories to promote theory–practice integration during first practice placement: an irish perspective. journal of clinical nursing, 15(2), 155-161. oyedotun, t. d. (2020). research in globalisation sudden change of pedagogy in education driven by covid-19 : perspectives and evaluation from a developing country. research in globalisation, 2(october). https://doi.org/10.1016/j.resglo.2020.1000 29 rapanta, c., botturi, l., goodyear, p., guàrdia, l., & koole, m. (2020). online university teaching during and after the covid-19 crisis: refocusing teacher presence and learning activity. postdigital science and education 2020 2:3, 2(3), 923–945. https://doi.org/10.1007/s42438-020-00155-y rizvi, y. s., & nabi, a. (2021). transformation of learning from real to virtual: an exploratorydescriptive analysis of issues and challenges. journal of research in innovative teaching & learning, 14(1), 5–17. https://doi.org/10.1108/jrit-10-2020-0052 saiyad, s., virk, a., mahajan, r., & singh, t. (2020). online teaching in medical training: establishing good online teaching practices from cumulative experience. international journal of applied and basic medical research, 10(3), 149. https://doi.org/10.4103/ijabmr.ijabmr_3 58_20 shahriar, s. h. bin, arafat, s., sultana, n., akter, s., khan, m. m. r., nur, j. m. e. h., & khan, s. i. (2021). the transformation of education during the corona pandemic: exploring the perspective of the private university students in bangladesh. asian association of open universities journal, ahead-of-p. https://doi.org/10.1108/aaouj-02-20210025 singh, b., & singh, r. (2020). nursing education during covid-19 pandemic: way forward for teaching hospitals in nepal. europasian journal of medical sciences, 2(2), 24–27. https://doi.org/10.46405/ejms.v2i2.126 spence, d., zambas, s., mannix, j., jackson, d., & neville, s. (2019). challenges to the provision of clinical education in nursing. https://doi.org/10.1080/10376178.2019.1 606722, 55(4–5), 458–467. https://doi.org/10.1080/10376178.2019.16 06722 taha, m. h., abdalla, m. e., wadi, m., & khalafalla, h. (2020). curriculum delivery in medical education during an emergency : a guide based on the responses to the covid-19 pandemic. mededpublish, 1–11. weberg, d., chan, g. k., & dickow, m. (2021). disrupting nursing education in light of covid-19. the online journal of issues in nursing, 26(4). https://doi.org/10.3912/ojin.vol26no01m an04 wickramaarachchi, w., perera, s., & jayasinghe, s. (2020). covid-19 epidemic in sri lanka: a mathematical and computational modelling approach to control. computational and mathematical methods in medicine, 2020. world health organisation. (2021). nurse educator core competencies. retrieved november 21, 2021, from https://www.who.int/publications/i/item/n urse-educator-core-competencies https://doi.org/10.1186/s12912-020-00532-9 https://doi.org/10.1016/j.resglo.2020.100029 https://doi.org/10.1016/j.resglo.2020.100029 https://doi.org/10.1080/10376178.2019.1606722 https://doi.org/10.1080/10376178.2019.1606722 ihtp, 2(1), 26-34, 2022 cc by-nc-nd 4.0 issn 2563-9269 33 table 1. questionnaire guide no. question 1 what is the present situation in nursing education institutions (neis) under the impact of the covid-19 pandemic? 2 what are the challenges faced by neis to continue nursing education? 3 what are the strategies started at the institutional level? 4 what are the pros and cons of the above initiatives? 5 as nursing is a discipline that is based on hands-on skills, how do you think about meeting the goals of each program/job prospective? 6 what are the suggestions to improve or continue nursing education? i.e., implications for education, research, and policy competency development in classroom teaching practical and clinical learning examinations changing curriculum to face current and future challenges related to pandemics like covid-19 meeting the learning objectives of nursing programs ihtp, 2(1), 26-34, 2022 cc by-nc-nd 4.0 issn 2563-9269 34 table 2. thematic map the direct impact of the covid-19 pandemic on nursing education covid-19 guidelines and disruption nursing education administration of nursing educational institutes classroom learning skill-lab practice and clinical training community health program final year research project student evaluation post-phoning new recruitment delayed graduation role of the elearning in nursing education during covid-19 pandemic introduction of elearning strategies challenges faced limited facilities in nursing educational institutions social inequity and online nursing training staff and students sustainability pros and cons of online teaching acquisition of nursing skills and competencies integration of knowledge, skills, and attitudes skill lab practice and clinical training student assessment and evaluation application of alternative methods effectiveness of online assessment attitudes and soft skills development preparation for future work implication for education, research, and policy education-need for curriculum changes research-need for expanded research policyproviding adequate facilities recruitment and retaining of nurses ihtp, 2(1), 67-79, 2022 cc by-nc-nd 4.0 issn 2563-9269 67 covid-19 health literacy scale development sevil alkan çeviker1, bulent akkaya2, şebnem şenol akar3 1school of medicine, infectious diseases and clinical microbiology, çanakkale onsekiz mart university, turkey; 2ahmetli vocational schooloffice management manisa celal bayar university, turkey; 3school of medicine, infectious diseases and clinical microbiology manisa celal bayar university, turkey corresponding author: s. a. çeviker (s-ewil@hotmail.com) abstract objective: the purpose of this study was to develop a covid-19 health literacy (hl) scale. material and methods: data were obtained from three samples of medical students (n=628) having different demographic characteristics in different regions of turkey. a pilot study was conducted to assess language validity. several psychometric tests were conducted to assess the tools’ reliability and validity. results: a .963 kaiser-meyer-olkin (kmo) value was obtained, in addition to a 72.26% variance score. the scale also demonstrated reliability values (internal consistency; α=.94). two dimensions consisting of 20 items were identified to represent and the covid-19 hl. conclusion: the covid-19 hl scale demonstrated robust psychometric properties. it was also deemed to be reliable and valid in assessing health literacy of covid-19 among the medical students and will also be useful in increasing covid-19 awareness among individuals. keywords covid-19, covid-19 health literacy scale, scale development introduction health literacy (hl) is defined as a set of concepts that include many health-related decisions and practices, such as knowing how to access health services, knowing how to sign health-related information forms, making decisions on any topic of health, and correct usage of the medications (yılmaz & tiryaki,2016; akbal & gökler,2020; özkan et al.,2020; balçık et al. ,2014). the concept of hl was used for the first time by simond sk in the year 1974 and in the year 1998 world health organization (who) defined hl as "the ability to access, understand and use health information for the protection and continuity of health" (who, 1998). however, this concept, which has not been emphasized for many years, has gained particular importance in recent years (bakan&yıldız,2019). linking to health literacy, we stress that covid-19 health literacy is a very important concept for health professionals, especially medical school students. these students, who will guide the medicine of the future, are an important group in achieving the goals set in the "health promotion in line with the 2030 sustainable development goals" shanghai declaration. first, it is necessary to develop and activate hl at the level of health students and physicians. for "to use to enable people to control their own health and determinants using digital technology (telemedicine)", which is predicted as the approach of the future, the fact that all segments of the society, especially physicians, have detailed information on this issue will enable these goals to be achieved (park, 2016; üstgörül et al. 2020). especially in lowand middle-income countries while patients use preventive health services less, they tend to use medical services more. therefore, they understand their treatment less and their adaptation to treatment is at a lower level. for covid19 hl awareness in patients, it is important that healthcare professionals with high covid-19 hl primarily serve. if medical students are aware of the concept of covid-19 hl, the information they receive during their education; it will be ensured that they can recognize their own diseases, identify their ihtp, 2(1), 67-79, 2022 cc by-nc-nd 4.0 issn 2563-9269 68 findings, and use them in the context of making decisions that they think are good for them. this perspective will enable them to convey covid19 hl awareness to the patients they serve. low or poor hl is an important topic not only for patients, but also for health professionals, health institution administrators, and even politicians. because it is necessary for the doctor to develop a special communication and approach strategy for individuals with low covid-19 hl. in addition, covid-19 hl is of great importance in reorganizing and restructuring health services due to the increasing use of health services and health costs carries (teleş & kaya, 2018; alpuche-aranda & lazcano-ponce, 20207). covid-19 hl and health literacy are closely related and become even more important especially during the pandemic. how challenging the information pollution in the pandemic is for healthcare professionals and patients has once again shown itself in the control of the epidemic and vaccination studies. (puri et al., 2020.) therefore, beside hl, covid-19 hl is also very important for the prevention of diseases (castro-sánchez et al., 2016). individuals should not occupy health centres with less important medical situations and should comply with the rules (such as quarantine) taken by the health system in epidemic situations. on the other hand, there were also delays in applying to the hospital due to the fear of the pandemic or misinterpretation of their personal health conditions. (mccaffery et al., 2020). in this context, urgent decisions need to be taken and implemented by health managers. it is thought that covid-19 hl, the importance of which cannot be denied, will undoubtedly be effective in the management of this global epidemic and in preventing its spread (nguyen et al., 2021). the learning models used in medical education today are more about what the correct and effective learning methods are and how they can be taught to students, rather than teaching. students who learn to learn, could question, interpret, participate, and know how to share are accepted as active learning (turan özdemir, 2003). measuring how medical students will interpret accurate information about covid-19 under the guidance of hl will enable medical students to be encouraged to learn correctly. therefore, we aimed to develop the covid-19 health literacy (hl) scale in this study. we think that this scale will be important both in terms of making appropriate improvements in educational conditions by using it in the individual hl measurement of students who receive education in pandemic risky conditions in the medical faculty, and in determining the perceptions of covid-19 hl in the protracted pandemic process of medical students who will be the future managers / leaders who will work in health institutions and organizations. methods the purpose of this study was to develop a scale to assess medical students’ covid-19 hl. 628 medical students from different universities in turkey were the sample of the study. surveys were emailed to participants in each sample. the email included a cover letter explaining the purpose of the study, instructions, and a link for the online survey's completion. after the content, language, and structure of the scale were validated the reliability and construct assessment were analysed as below. measurement strategy and item development an inductive approach was used to develop an initial pool of items (hinkin, 1998) based on the qualitative study. for the preparation of the scale items, the validated scales related to hl. since the target group is thought to have more advanced skills to critically analyze health-related information and enable it to be used in health decisions. 26 items were created by scanning articles related to covid-19 and hl. among the scale items, current data related to covid-19, diagnosis, treatment and prevention methods, medical and social knowledge adequacy, and the source of the information regarding the developments on the subject were included. pilot study: item reduction before the pilot study, a language expert was consulted, and 70 medical students were interviewed face-to-face. after the pilot study, a number of questions were corrected by taking the opinion of three experts, one of whom was a language expert, and 6 items were removed. study design and settings ihtp, 2(1), 67-79, 2022 cc by-nc-nd 4.0 issn 2563-9269 69 of the medical faculty students studying at seven universities with a total of 2000 students, a simple randomly selected sample study was conducted with the participation of medical students from 1, may to 1, july 2021 by using online survey. medical students from seven medical faculties across turkey were included in the study. universities were selected as comparable in terms of key features such as size, geographic location. surveys were emailed to 350 potential participants for each sample. the email included a cover letter explaining the purpose of the study, instructions, and a link for the online survey's completion. participants six hundred and twenty-eight medical students participated in the study. surveys were emailed to 350 participants for each sample. sample 1 yielded 302 responses for conducting to efa and sample 2 yielded 326 responses for conducting to cfa from different students studying in different universities. data collection procedure medical students from different universities were invited to participate in the study by two researchers (sac, ssa). an online survey link send to medical students via email, sms, whatsapp. we didn’t interview with them due to the covid-19 pandemic. those who did not agree to participate in the study were not included the study. a 5-point likert scale (1 = “strongly disagree”, 2 = “disagree”, 3 = “neither disagree or agree”, 4 = “agree”, 5 = “strongly agree”) was used. after the expert panel suggested removing 6 items that are not closely related with covid19 or have the same meaning with other(s), finally 20 items were left to collect data. the survey took about 7-10 minutes to complete the questions. all questions were mandatory; thus, there was not any missing data in our study. the collected data was analyzed by ibm spss statistics (version 22, ibm corporation, new york, ny), and structural equation modelling (sem) using amos 23 application by the researchers. data analysis and content validation the distribution of the studied variables was explored using descriptive analysis. content validity was conducted to examine the extent to which the concepts are represented by the items in the questionnaire (guyatt et al. 1993). principal component analysis (pca) to examine the structure of the covid-19 hl scale that we tried to develop in our study. we also used the kaiser-meyer-olkin (kmo) sampling adequacy criterion to determine the suitability of the data for component analysis. the originally established criteria kmo measure of sample adequacy. the cronbach’s alpha test was used to assess the internal consistency, with satisfactory reliability corresponding to a value ≥0.70. : the percentages of respondents who scored the lowest score or the highest score were calculated. the minimal floor and ceiling effects (<15%) were recommended (mchorney, c. a., & tarlov, a. r. 1995; terwee, et al. 2007). the significance level was set at p < 0.05. ethical consideration the study protocol was approved by the institutional ethical review committee of manisa celal bayar university, turkey (no. e--050.01.0469556). the online consent form was obtained from the participations before answering the questions. the helsinky protocol, which was revised in 2013, was followed in the study. results participation in both groups was quite high. in the 1st sample, the survey was sent to 350 people, 86% (n=302) answered, in the 2nd sample it was 93%(n=326). participant characteristics the mean age of the participants was 22.39 years (18-40 years). 199 students (65.9%; mean ± sd= 20.4±1.18) are between 18 and 22, 103 students are between 23 and 40 (34.1%; mean ± sd=26.6±4.65) most of the respondents (72.2%) were female. the largest group (44.4%) was from 1st-year students. most of the participants (59.9%) have heard about hl while (40.7%) have no idea about hl. while 49.0 % of participants stated that they have heard about covid-19 hl from the internet, social media, school, and environment, the rest (51.0 %) stated that they have not heard. ihtp, 2(1), 67-79, 2022 cc by-nc-nd 4.0 issn 2563-9269 70 psychometric properties of covid-19 hl and construct assessment (efa) to determine the factor structure of the scale, data was collected from 302 university medical students. after the content, language, and structure of the scale were validated, the scale items were examined by using exploratory factor analysis (efa). the item to response ratio for the current efa was approximately fifteen times the number of items on the scale 302/20≈15.1), suggesting adequacy of the sample for carrying out efa. the bartlett’s test of sphericity to determine the factorability of the data, and the kmo test to measure the sampling relevance were performed (lau & yuen, 2014). the kmo measure of sampling adequacy yielded a value of .963, indicating good sampling relevance, and the test of sphericity was significant (χ2(190) = 6341,698, p =0.000), indicating the data was suitable for structure detection. kaiser (1974) recommends that the eigen values below 1.0 are indicative of potentially unstable factors. by applying the kaiser criteria, 72.26% of the total variance was explained by two factors (table 1). factors correlate and principal component analysis were conducted. all the factor loading values are greater than .30 and any of the items were not loading in two factors, therefore, no item was removed from the scale. through this process, two factors and 20 items were extracted. table 2 presents descriptive statistics for each item and table 3 presents the items and the factors which are in the acceptable range for factor loading. dimensionality and construct validity (cfa) factor structure was examined though confirmatory factor analysis (cfa). sample 2 yielded 326 responses from different students studying in different universities in turkey. the mean age was 24.42 years between 18-47 years. most of the respondents (60.9%) were female. the largest group (38.4%) was from grade 1 students. most of the participants (62.2%) have heard about covid-19 hl while (37.8%) have no idea about covid-19 hl. just over 47 % of students stated they obtained information related to covid-19 from the internet, social media, school, and environment. most of the students (83.4%) indicated they read health care information sheet/paper/brochure by themselves; 52.8% of participants stated they fully understood materials related to covid; and 42.9% stated they required further explanation by health care providers. cronbach’s alpha score of .7 was obtained. as well, cronbach’s alpha of .929 for the follow dimension, .936 for the search dimension, and .941 for the covid19 hl scale was reported suggesting the reliability of the scale is quite high. confirmatory factor analysis (cfa) was conducted with initial results suggesting a good fit for the twofactor model. our inspection of modification indexes, standardized residuals, and factor loadings indicates 20 items were loading on two factors that confirmed scale structures as seen in efa analysis. therefore, we did not need to delete items when developing and validating a new measure, items that have low loadings and load on more than one factor (e.g., hinkin, 1998). accordingly, we obtained a 20-item two-factor model, which demonstrated a good fit (cmin (χ²) is 2.58; p 0.000; rmsea 0.069; cfi 0.937; ifi 0.938; tli 0.928; gfi 0.912) and determined that the standardized predictive values were positive and the values of goodness of fit were within acceptable ranges (schermelleh-engel et al., 2003). both factors and all items are statically significant (p<.05) which confirms factors structure (table 4). discussion although all participants in our study were medical school students, awareness, comprehension, and understanding of covid-19 was below what we expected. this may be due to the rapid spread of misinformation pertaining to the pandemic (lockyer et al. 2021; vijjali, r., potluri, p., kumar, s., & teki). thus, there is a need for medical schools to ensure their students are kept up to date with current health situations, as these students may play a larger role in caring for patients diagnosed with these diseases. medical school curriculum should be flexible to accommodate for the integration of pandemic, epidemics, or endemic. this will allow for integration of real world, current events into clinical case studies, lecture content, and clinical placements, resulting in a richer teaching and learning environment. assessment of health literacy is key to understanding students’ perception of covid 19. no ihtp, 2(1), 67-79, 2022 cc by-nc-nd 4.0 issn 2563-9269 71 statistically significant difference was found between the students' age, gender, class, educational background, social security and income levels, and hl level in general and in its sub-dimensions (soysal & obuz, 2020). this may be due to the sudden onset of the pandemic which appeared to impact all individuals. thus, a uniform curriculum should be created, implemented, and revised on an ongoing basis. the findings also suggest the health literacy scale demonstrated acceptable reliability and validity scores and can be adapted across several healthcare sectors. limitation and conclusion the study data was collected by online survey due to pandemic conditions, and the fact that no face-toface survey was applied is the limitation of the study. in addition, the number of participants is limited due to the low number of people that can be reached. in conclusion, while the current study's findings suggested a feasible structure for the scale, more research is clearly needed to confirm these findings. in this regard, investigations undertaken in other sectors or nations will be particularly valuable. references abel, t., & mcqueen, d. (2020). critical health literacy and the covid-19 crisis. health promotion international, 35(6), 1612-1613. akbal, e., & gökler, m. e. (2020). covid-19 salgini sürecinde eksikliği ortaya çikan bir gerçek: sağlik okuryazarliği. estüdam halk sağlığı dergisi, 5, 148-155. akkaya, b., kayalıdere, u. k., aktaş, r., & karğın, s. (2020). çevik liderlik yaklaşımı ve çevik lider davranışlarını ölçmeye yönelik bir ölçek geliştirme çalışması. i̇şletme araştırmaları dergisi, 12(2), 1605-1621. aktaş, h. (2018). sağlık ve eğitimi değerlendirmede bir ölçme aracı; sağlık okuryazarlığı. sağlık bilimlerinde eğitim dergisi, 1(1), 12-16. bakan, a. b., & yıldız, m. (2019). 21-64 yaş grubundaki bireylerin sağlık okuryazarlık düzeylerinin belirlenmesine ilişkin bir çalışma. sağlık ve toplum, 29(3), 33-40. balçık, p. y., taşkaya, s., & şahin, b. (2014). sağlık okur-yazarlığı. taf preventive medicine bulletin, 13(4), 321-326. bryman, a., & cramer, d. (2012). quantitative data analysis with ibm spss 17, 18 & 19: a guide for social scientists. routledge. bükecik, n., & adana, f. (2021). hastane çalışanlarının sağlık okuryazarlık düzeyleri ve i̇lişkili faktörler: konya i̇li örneği. caucasian journal of science, 8(1), 113. constantin, c. (2014). principal component analysis-a powerful tool in computing marketing information. bulletin of the transilvania university of brasov. economic sciences. series v, 7(2), 25-30. castro-sánchez, e., chang, p. w., vila-candel, r., escobedo, a. a., & holmes, a. h. (2016). health literacy and infectious diseases: why does it matter?. international journal of infectious diseases, 43, 103-110. dadaczynski, k., okan, o., & rathmann, k. (2020). covid-19 health literacy survey: university students (covid-hl-survey). questionnaire and scale documentation. [(accessed on 30 july 2020)]; available online: https://pub.unibielefeld.de/record/2942920]. devellis, r. f., & thorpe, c. t. (2021). scale development: theory and applications. sage publications. durmuş, a., akbolat, m., & amarat, m. (2021). covid19 aşı okuryazarlığı ölçeği’nin türkçe geçerlilik ve güvenirliliği. cukurova medical journal, 46(2), 732-741. guyatt, g. h., feeny, d. h., & patrick, d. l. (1993). measuring health-related quality of life. annals of internal medicine, 118(8), 622629. hernandez, r. g., hagen, l., walker, k., o’leary, h., & lengacher, c. (2021). the covid-19 vaccine social media infodemic: healthcare providers’ missed dose in addressing misinformation and vaccine hesitancy. human vaccines & immunotherapeutics, 17(9), 2962-2964. hinkin, t. r. (1998). a brief tutorial on the development of measures for use in survey questionnaires. organizational research methods, 1(1), 104-121.. kaiser, h. f. (1974). an index of factorial simplicity. psychometrika, 39(1), 31-36. lau, w. w., & yuen, a. h. (2014). developing and validating of a perceived ict literacy scale for https://pub.uni-bielefeld.de/record/2942920 https://pub.uni-bielefeld.de/record/2942920 ihtp, 2(1), 67-79, 2022 cc by-nc-nd 4.0 issn 2563-9269 72 junior secondary school students: pedagogical and educational contributions. computers & education, 78, 1-9. lockyer, b., islam, s., rahman, a., dickerson, j., pickett, k., sheldon, t., ... & bradford institute for health research covid‐19 scientific advisory group. (2021). understanding covid‐19 misinformation and vaccine hesitancy in context: findings from a qualitative study involving citizens in bradford, uk. health expectations, 24(4), 1158-1167. mann, c. m., & wood, a. (2006). how much do medical students know about infection control?. journal of hospital infection, 64(4), 366-370. mccaffery, k., dodd, r., cvejic, e., ayre, j., batcup, c., isautier, j., & wolf, m. (2020). health literacy and disparities in covid-19–related knowledge, attitudes, beliefs and behaviours in australia. public health research & practice, 30(4),1-9 mchorney, c. a., & tarlov, a. r. (1995). individualpatient monitoring in clinical practice: are available health status surveys adequate? quality of life research, 4(4), 293307. mudrova, m., & procházka, a. (2005, november). principal component analysis in image processing. in proceedings of the matlab technical computing conference, prague. naveed, m. a., shaukat, r., & anwar, m. a. (2020). development and validation of a covid-19 literacy scale. library philosophy and practice (e-journal), 4362. [accessed on 30 july 2020, https://digitalcommons.unl.edu/libphilprac/ 4362]. nguyen, h. c., nguyen, m. h., do, b. n., tran, c. q., nguyen, t. t., pham, k. m., ... & duong, t. v. (2020). people with suspected covid-19 symptoms were more likely depressed and had lower health-related quality of life: the potential benefit of health literacy. journal of clinical medicine, 9(4), 2-18. nukeshtayeva, k., lubchenko, m., omarkulov, b., & delellis, n. (2021). validation non-english version of modified checklist for autism in toddlers-revised with follow-up. journal of clinical medicine of kazakhstan, 18(4), 4-11. nunnally, j. c. (1994). psychometric theory 3e. tata mcgraw-hill education. okan, o., bollweg, t. m., berens, e. m., hurrelmann, k., bauer, u., & schaeffer, d. (2020). coronavirus-related health literacy: a crosssectional study in adults during the covid-19 infodemic in germany. international journal of environmental research and public health, 17(15), 5503. okur e, evcimen h, yağci şentürk a. (2021). sağlık hizmetleri meslek yüksekokulu öğrencilerinin sağlık okuryazarlığı düzeylerinin i̇ncelenmesi. sted/sürekli tıp eğitimi dergisi, 30(1), 18-24. üstgörül, s., önür, h., & tekin önür, h. (2020). üniversite öğrencilerinin toplumsal cinsiyet algıları ile cinsel tutumlarının incelenmesi. al farabi uluslararası sosyal bilimler dergisi, 5(3), 77–87. özkan, s., tüzün, h., dikmen, a. u., & i̇lhan, m. n. (2020). salgınlarda toplum davranışı ve sağlık okuryazarlığı. journal of biotechnology and strategic health research, 4, 105-110. park, y. h. (2016). the 9th global conference for health promotion and shanghai declaration. health policy and management, 26(4), 243-245. puri, n., coomes, e. a., haghbayan, h., & gunaratne, k. (2020). social media and vaccine hesitancy: new updates for the era of covid19 and globalized infectious diseases. human vaccines & immunotherapeutics, 16(11), 2586-2593. schermelleh-engel, k., moosbrugger, h., & müller, h. (2003). evaluating the fit of structural equation models: tests of significance and descriptive goodness-of-fit measures. methods of psychological research online, 8(2), 23-74. shaukat, r., asghar, a., & naveed, m. a. (2021). impact of health literacy on fear of covid19, protective behavior, and conspiracy beliefs: university students’ perspective. libr. philos. pract, 4620, 1-14. soysal a, & obuz e. (2020). sağlık okuryazarlığı: kahramanmaraş sütçü i̇mam üniversitesi sağlık yönetimi öğrencileri üzerinde bir araştırma. kahramanmaraş sütçü i̇mam üniversitesi sosyal bilimler dergisi, 17(2), 1198-1217.7. https://digitalcommons.unl.edu/libphilprac/4362 https://digitalcommons.unl.edu/libphilprac/4362 ihtp, 2(1), 67-79, 2022 cc by-nc-nd 4.0 issn 2563-9269 73 terwee, c. b., bot, s. d., de boer, m. r., van der windt, d. a., knol, d. l., dekker, j., & de vet, h. c. (2007). quality criteria were proposed for measurement properties of health status questionnaires. journal of clinical epidemiology, 60(1), 34-42. özdemir, s. t. (2003). tıp eğitimi ve yetişkin öğrenmesi. uludağ üniversitesi tıp fakültesi dergisi, 29(2), 25-28. world health organization (2019) coronavirus disease (covid-19) pandemic [accessed on 30 july 2020)]. available online https://www.who.int/emergencies/diseases /novel-coronavirus-2019 vijjali, r., potluri, p., kumar, s., & teki, s. (2020). two stage transformer model for covid-19 fake news detection and fact checking. arxiv preprint arxiv:2011.13253. world health organization (1998) division of health promotion, education and communications health education and health promotion unit. health promotion glossary. world health organization, geneva, [(accessed on 30 july 2021)]; available online: https://www.who.int/healthpromo tion/about/hpr%20glossary%201998.pdf yılmaz m. & tiraki, z. (2016). sağlık okuryazarlığı nedir? nasıl ölçülür?. dokuz eylül üniversitesi hemşirelik fakültesi elektronik dergisi, 9(4), 142-147. https://www.who.int/healthpromotion/about/hpr%20glossary%201998.pdf https://www.who.int/healthpromotion/about/hpr%20glossary%201998.pdf ihtp, 2(1), 67-79, 2022 cc by-nc-nd 4.0 issn 2563-9269 74 table 1. total variance explained component initial eigen values extraction sums of squared loadings total % of variance cumulative % total % of variance cumulative % 1 12,865 64,323 64,323 12,865 64,323 64,323 2 1,588 7,941 72,264 1,588 7,941 72,264 3 ,796 3,979 76,244 4 ,674 3,372 79,615 5 ,562 2,808 82,423 6 ,514 2,568 84,991 7 ,355 1,775 86,765 8 ,345 1,726 88,491 9 ,306 1,532 90,024 10 ,301 1,507 91,531 11 ,278 1,388 92,919 12 ,241 1,207 94,125 13 ,200 ,999 95,125 14 ,189 ,943 96,068 15 ,164 ,822 96,890 16 ,151 ,755 97,644 17 ,136 ,682 98,326 18 ,130 ,651 98,977 19 ,111 ,557 99,534 20 ,093 ,466 100,000 extraction method: principal component analysis. ihtp, 2(1), 67-79, 2022 cc by-nc-nd 4.0 issn 2563-9269 75 table 2. descriptive statistics for each item items on health literacy covid-19 scale s1 s2 s3 s4 s5 s6 s7 s8 s9 s10 s11 s12 s13 s14 s15 s16 s17 s18 s19 s20 n valid 326 326 326 326 326 326 326 326 326 326 326 326 326 326 326 326 326 326 326 326 missing 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 0 mean 3,39 3,13 2,90 3,21 3,19 3,31 3,25 3,36 3,27 3,09 3,27 3,31 3,03 2,70 2,75 2,54 3,02 2,85 3,02 2,97 standard deviation 1,069 1,190 1,131 1,114 1,120 1,097 1,143 1,147 1,154 1,208 1,164 1,145 1,095 1,082 1,167 1,175 1,173 1,244 1,174 1,172 ihtp, 2(1), 67-79, 2022 cc by-nc-nd 4.0 issn 2563-9269 76 table 3. the results of efa component matrixa id* component no statements 1 2 1 s1 i have enough information about covid-19. ,700 2 s2 i closely follow social media about covid-19. ,759 3 s3 i constantly follow global covid-19 case numbers. ,794 4 s4 i closely follow new developments regarding covid-19. ,857 5 s5 i closely follow new developments regarding the treatment of covid-19. ,858 6 s6 i closely follow new developments regarding covid-19 measures. ,893 7 s7 i closely follow the developments regarding the covid-19 vaccine results. ,844 8 s8 i closely follow the ways/methods of protection from covid-19 ,868 9 s9 i closely follow new developments related to transmission routes such as covid-19. ,870 10 s10 i constantly monitor the number of covid-19 cases in the province i live in. ,804 11 s11 i follow the covid-19 statements of the ministry of health ,860 12 s12 i closely follow new developments regarding covid-19 symptoms. ,904 13 s13 i usually follow the world health organization's statements about covid-19. ,839 14 s14 i constantly research scientific studies about covid-19. ,745 15 s15 i am constantly researching how covid-19 will end. ,775 16 s16 i research the epidemiology and treatment of covid-19. ,764 17 s17 i constantly research whether the measures taken regarding covid-19 are sufficient or useful. ,784 ihtp, 2(1), 67-79, 2022 cc by-nc-nd 4.0 issn 2563-9269 77 18 s18 i am constantly researching when the covid-19 pandemic will end. ,745 19 s19 i constantly research how the covid-19 pandemic affects/will affect social life. ,779 20 s20 i am constantly researching how the covid-19 pandemic has/will affect family life/order. ,744 extraction method: principal component analysis. a. 2 components extracted. *it denotes the position of statement in the covid-19 hl scale capturing the essence of the factors, they were named as below: factor 1= follow covid-19 hl with 14 items factor 2= search covid-19 hl with 6 items ihtp, 2(1), 67-79, 2022 cc by-nc-nd 4.0 issn 2563-9269 78 table 4: default model estimate s.e. c.r. p label f2 <--covid 19 health_literacy 1,000 f1 <--covid 19 health_literacy ,544 ,064 8,518 *** s14 <--f1 1,000 s13 <--f1 1,221 ,070 17,406 *** s12 <--f1 1,438 ,094 15,350 *** s11 <--f1 1,374 ,095 14,531 *** s10 <--f1 1,309 ,097 13,465 *** s9 <--f1 1,377 ,094 14,679 *** s8 <--f1 1,368 ,093 14,678 *** s7 <--f1 1,328 ,093 14,331 *** s6 <--f1 1,372 ,090 15,290 *** s5 <--f1 1,337 ,091 14,688 *** s4 <--f1 1,348 ,091 14,859 *** s3 <--f1 1,209 ,091 13,299 *** s2 <--f1 1,213 ,095 12,733 *** s1 <--f1 ,853 ,084 10,142 *** s20 <--f2 1,000 s19 <--f2 1,051 ,040 26,311 *** s18 <--f2 1,122 ,060 18,692 *** s17 <--f2 1,079 ,056 19,270 *** s16 <--f2 ,845 ,062 13,646 *** ihtp, 2(1), 67-79, 2022 cc by-nc-nd 4.0 issn 2563-9269 79 estimate s.e. c.r. p label s15 <--f2 1,027 ,057 18,004 *** ihtp, 1(3), 328-335, 2021. cc by-nc-nd 4.0 issn 2563-9269 328 perception of self-care ability among patients with stroke post-discharge: a qualitative descriptive study in iran nasrin jafari-golestan1, asghar dalvandi2, 3, mohammadali hosseini3, masoud fallahi khoshknab3, abbas ebadi4,5, mahdi rahgozar6, souraya sidani7 1department of nursing management, faculty of nursing, aja university of medical sciences, tehran, iran; 2department of midwifery, faculty of nursing and midwifery, islamic azad university, tehran, iran; 3department of nursing education, university of social welfare and rehabilitation sciences, tehran, iran; 4behavioral sciences research center, life style institute, baqiyatallah university of medical sciences, tehran, iran; 5nursing faculty, baqiyatallah university of medical sciences, tehran, iran; 6department of biomedical statistics, university of social welfare and rehabilitation sciences, tehran, iran; 7daphne cockwell school of nursing, ryerson university, toronto, canada corresponding author: a. dalvandi (dalvandiasghar@gmail.com) abstract background: patients with stroke, once at home, experience different perceptions of their ability for self-care. the purpose of this qualitative descriptive study was to elucidate patients’ perception of their self-care ability. methods: semi-structured interviews were held with 10 patients with stroke, within one month following discharge from hospital. sampling was purposeful and continued until data saturation was reached. all recorded interviews were transcribed and imported to maxqda software. the transcripts were content analyzed, following the five-step method by granheim and lundman. results: three main categories and ten subcategories were revealed: immersion in distress (feeling of sorrow and sadness, lack of control of life, feeling of anxiety and worry), perceived difficulty (dependency on others, disabling nature of the disease, multiple underlying diseases and mental health problems) and compatible adaptive reaction (acceptance of disability, improving health literacy, enhancement of spiritual health). conclusions: patients with stroke reported limited ability for self-care post-discharge, which had a considerable effect on their engagement in self-care behaviors and application of recommended treatment methods at home. the findings have implications for designing nurse-led interventions to promote self-care in this vulnerable patient population. keywords ability, perception, post-discharge, qualitative descriptive study, self-care, stroke background investigating and understanding self-care ability is extremely important for evaluating the capacity of patients with stroke to participate in the activities to manage their recovery in the period following discharge and through their transition from acute conditions (sidani & doran, 2014). stroke is a chronic condition induced by cerebrovascular incidents, which can cause some permanent damage in cognition, perception, movement, and/or emotional deficiencies. this damage is often associated with limitations in physical, psychological and social functions. accordingly, patients with stroke require full support to be able to function and take care of themselves (brown et al., 2013; hoyle et al., 2012; silva júnior et al., 2020). every year, almost 16 million people around the world have a stroke; of these, five million persons experience functional limitations. two-thirds of stroke patients experience another stroke within five ihtp, 1(3), 328-335, 2021 cc by-nc-nd 4.0 issn 2563-9269 329 years of the first stroke (tornbom et al., 2017). the sudden experience of a stroke and associated functional limitations is overwhelming and influences patient’s perceived self-care ability. this in turn increases complexity of the patient’s situation, in particular in the presence of concurrent health problems and of mental, emotional and social consequences. the consequences can further negatively impact patient’s self-care ability (kristensen et al., 2017). perception and cognition are other personal factors influencing perceived self-care ability in patients with stroke (casey et al., 2008; jones & riazi, 2011). the world health organization has identified social, political, and cultural changes at the global, national, and regional levels as affecting the health of the population (riegel et al., 2017). challenges such as the global financial crisis, epidemiological transition from communicable to non-communicable diseases, increased inequality and cost of healthcare among countries threaten the health of a large proportion of the population in asia (world health organization, 2009). support for self-care following a stroke can result in improvement of daily activities performance and reduces the risk of dependency and death in patients suffering from stroke (riegel et al., 2017). nurses need to understand the various social, political, economic, and individual factors so that they can identify those that affect a patient’s self-care ability (brucker, 2018; wilkinson & whitehead, 2009). understanding how the factors contribute to self-care can provide an essential foundation for designing more effective rehabilitation intervention programs and self-management interventions for patients with stroke. considering the limited information available regarding perceived self-care ability in patients with stroke following hospital discharge in iran (jafarigolestan et al., 2019), this qualitative descriptive research was designed to elucidate patients’ perceptions of their self-care. method this qualitative descriptive study involved semistructured interviews with stroke patients in iran, held in 2019. inclusion criteria of participants the interviews elicited patients’ views of their selfcare ability, experience and behaviors. patients with stroke were eligible for this study if they 1) were within the one-month period following discharge from acute care hospitals; 2) were living independently at home; 3) were able to express themselves clearly; and 4) had good cognition (indicated by a score > 21 on the mini mental state exam) and physical function (indicated by a score > 22 on the fim form) (penta et al., 2001), implying that patients had no one-sided hemiplegia and hemiparesis, no need for walking aides (e.g. walker or a cane), going to the toilet independently, and living in the house independently. sampling the target population included patients with stroke receiving rehabilitation. healthcare providers at the rehabilitation center in the city of tehran assisted in identifying and referring potentially eligible patients to the study, and those meeting all eligibility criteria were selected. purposive sampling was used to represent patients with different sociodemographic and health characteristics. diversity was considered in terms of age, gender, education, job, marital status, and frequency of stroke attacks. sampling was stopped when information saturation was reached. in total, 13 eligible patients provided informed consent, and the concurrent analysis of their responses reached saturation. most patients were interviewed in a private, quiet location at the rehabilitation center, at their convenience. data collection the interview questions were: describe your experience on a day in your life at home after you were discharged from the hospital; describe your selfcare ability. what actions do you take at home to take care of yourself? additional exploration questions were asked to probe for clarification and/or a more in-depth description of participants’ experiences. can you tell me more about it? can you give me an example? have you ever faced such a situation before? the duration of the interview varied between 20 to 30 minutes per participant. the interviews were conducted and audio-recorded with participants’ ihtp, 1(3), 328-335, 2021 cc by-nc-nd 4.0 issn 2563-9269 330 consent. sampling continued until data saturation, that is, no new information was forthcoming (speziale et al., 2011). the saturation was achieved at the 10th interview; however, three additional patients were interviewed to confirm saturation. the transcripts of the interviews were verified for accuracy and consistency by listening to the recordings. the first author analyzed the transcripts line by line, which were read repeatedly and thematically analyzed for their contents. co-authors of the study verified the emerging themes. data analysis data analysis was performed based on the graneheim and lundman (2004) five-step process. the method involved: (1) the interviews were transcribed verbatim and imported to maxqda software, (2) each transcription was considered as a unit of analysis and was read several times by the researcher to achieve a general understanding of its content, (3) the sentences or entire paragraphs of text were determined as meaning units to extract primary codes (4) comparison of primary codes and those reflecting similar ideas were combined to form the categories, and (5) determining the latent content of data and extracting the underlying concepts. conformability, credibility, and reliability criteria suggested by guba and lincoln (1994) were maintained during the analysis. to achieve this, the researcher established a trusting connection with the participants. after determining the primary codes, the participants’ opinions were compared to the codes and interpretations, and the data were modified in case of any contradictions. also, controlling techniques were performed on selected codes and categories by two research team members' who were expert in qualitative descriptive research. ethical approval this study was approved by the ethics committee of the university of social welfare and rehabilitation sciences under approval code no. ir.uswr.rec1396.208. all participants were informed clearly and entirely about the aim of the study and about the reason for using a tape-recorded during the interviews. they were also ensured about the anonymity and confidentiality of their information and recorded sound files. they were also informed about their right to withdraw from participation during any stages of the study, prior to signing the consent form. results the characteristics of participants are comprised 13 patients (three men and ten women) aged 48 to 87, with an average age of 63.7 years. the data analysis revealed three main categories and ten subcategories characterizing the participants’ perceptions of their self-care ability post-discharge. immersion in distress this category included subcategories: feeling of sorrow and sadness, lack of control over life, and feeling of anxiety and worry. feeling of sorrow and sadness according to participants, emotions such as unpleasant deep sadness due to disability, disappointment, and feeling of loss of roles, feeling of imbalance, uncomfortable sense of dependence on others, tendency for social isolation, feeling of imposing heavy burden for caring on relatives, and the feeling of imminent death are the effects of distress associated with illness. “this illness is terrible. i was so irritated after being discharged from the hospital; i went home and felt miserable.” (female, married, 50 years old) lack of control over life in this category, the participants reported feelings of always awaiting something horrible to happen, being unable to perform house chores and dealing with the children, having a problem in self-care, lack of family support, unfavorable home atmosphere, and feeling of helplessness. “at first, disability was complicated because i always managed and performed all the house chores by myself. so, at first, i really couldn’t take it; then i was forced to go to the hospital and other places; now i feel like a bomb has dropped on my head; this illness destroyed my family, and now i don’t know what my ihtp, 1(3), 328-335, 2021 cc by-nc-nd 4.0 issn 2563-9269 331 husband and son are up to.” (female, married, 49 years old) feeling of anxiety and worry the participants expressed feelings of worry about inability to take on their responsibilities, losing family cohesion (the children’s education and upbringing, house chores, their conjugal life), worry about frequency of the stroke, worry about exacerbation of their disability, worry about permanent dependency, feeling envy of their life before the disease, restrictions due to the disease, and previous capabilities. “i had a second stroke. what will happen if i have another stroke when i’m sleeping? … i’m so worried about my vague and dark future.” (male, married, 60 years old) perceived difficulty this category consisted of four subcategories: dependency on others, disabling nature of the disease, multiple underlying diseases, and mental health problems. dependency on others feelings such as lack of power, being unable to perform daily activities, needing to be taken care of by the children, inability to stand up and walk, insufficient energy, inability toward self-care, inability to cope with disability, being unable to help oneself, being unable to pick up objects by hand, moving hands, lack of independency toward others, being unable to return to work, incapability in maintaining personal hygiene, eating, and taking medicine on time are aspects of dependency. “when i returned home after stroke, i felt empty. i felt i was imprisoned in my own home. i completely turned into a dependent person. i was entangled in grief, sadness, and distress and did not know what future would hold for me. i felt like a real loser." (female, married 73 years old). disabling nature of the disease participants described ‘disabling’ experiences resulting from stroke such as having problems with body balance when walking, feeling of numbness in the hands and feet, urinary incontinence, chronic fatigue, intolerance of activity, having problems in recalling events, becoming unconscious, feeling weak and lethargic, emotional vacuum, sleep disorder, excess sleep, needing full support of family and the medical team at home at the same time, and feeling of weakness in the upper and lower limbs. “i get bummed when i can’t do anything with this hand. every night i have to pick up this hand with my other hand and put it on my stomach. my hand sticks to my body; i can’t move it … i just call god and the imams to be my savior. but nobody comes to the rescue.” (female, divorced, 72 years old) multiple underlying diseases participants reported having hypertension, diabetes, back pain, cardiovascular problems, joint diseases, breathing problems, and anorexia. “my blood sugar level and its fluctuations … diabetes… that’s my main problem…i think all of my problems are because of diabetes… anyway, all the problems came to me in turn… i’ve even experienced diabetic coma… and my blood sugar level dropped… my blood sugar fluctuations influence my ability for self-care.” (male, married, 63 years old) mental health problem participants described experiences such as fear, nervous irritability, sense of loss, having no good feelings, limited social relationships due to fear of disability, fear of injuring the caregivers, fear of falling, fear of permanent disability, fear of extra trauma during rehabilitation, and being afraid of staying alone at home. "i am very irritable and nervous after having a stroke and i cannot stand the slightest sound in my surroundings. at parties, i quickly get frustrated by the hustle and bustle of those around me and try to leave as soon as possible, although i know this will exacerbate my loneliness and social isolation." (male, married, 60 years old) compatible adaptive response ihtp, 1(3), 328-335, 2021 cc by-nc-nd 4.0 issn 2563-9269 332 this category included the following three subcategories: acceptance of disability, improving health literacy, and enhancement of spiritual health. acceptance of disability participants described getting used to disability, coping with disability, collaboration in self-care, applying strategies to overcome pain, inherent interest in performing activities, interest in repeating, practicing and being interested in learning, talking to disabled organ, and talking to oneself about the disabling problems. "i have experienced left hemiplegia due to stroke. after hospital discharge and several days of rest at home, i decide to start doing my activities as before. i use a walker. i accepts my conditions and understands my limitations, but i irregularly performs rehabilitation exercises. ". (female, married, 70 years old) improving health literacy participants showed some knowledge about the disease and its outcomes. they were informed about the nature of the disease, recognition of warning symptoms and signs of the disease, follow-up treatment, willingness to continue rehabilitation at home, ability to understand the reasons behind the disease, and perception of disability as significant effects related to this category. “if i experience the same situation, i can now understand my situation. now i have a hang of it and learned about it.” (female, married, 55 years old) enhancement of spiritual health participants explained the contribution of their faith in dealing with their condition; they had trust in and prayed to god, which strengthened their spirituality, that is, feeling peace after praying, connecting to the holy power, and self-connection. “praying makes me feel good … i pray to god to give me health. i tell god if you bring me a box full of jewelry, i don’t want it; i just want to be healthy again.” (female, divorced, 72 years old) discussion the results of this study demonstrated that the perception of self-care ability in patients with stroke post-discharge is different from the acute stage and the adverse consequences of the disabling nature of the disease are seen in all aspects of their existence. in the acute phase of a stroke, early detection, reduction of the severity of the disease, and prevention of adverse events are far more important than having self-care skills. while in the chronic stage of the disease, the ability to take care of oneself and have a proper understanding of this ability is seen more vividly (dalvandi et al., 2014). a critical perspective obtained from this study was immersion in distress, which makes patients experience sorrow and sadness, lack of control over their life, anxiety and worry. patients with stroke are faced with disorders that appear suddenly and unexpectedly and inhibit or limit their ability to carry out simple daily activities, which previously constituted their daily routine (casey et al., 2008; hoyle et al., 2012; welmer et al., 2007). this contributes to consequent dependency on others, which creates feelings of loss such as loss of identity and connection with others (casey et al., 2008), loss of independence accompanied by grief about the unfolding events. results of previous studies have also established that lower levels of sorrow and sadness in patients with stroke are associated with higher levels of self-care (bahrampouri et al., 2013; brucker, 2018; o'connor et al., 2021; welmer et al., 2007). many patients believe that they have lost their roles and responsibilities in life and themselves and are unable to deal with the existing issues of their lives (jang & shin, 2019). the repeatable nature of stroke incidents and the possibility of exacerbated disability is another cause of concern and anxiety among patients with stroke regarding self-care. the results our study are consistent with those of others. various factors influence the perception of patients with stroke about their self-care ability. the most salient factor relevant to the perception of their self-care ability is the perceived difficulty in carrying out usual activities due to the functional limitations associated with the nature of stroke (ekstrand et al., 2016). patients with stroke realize that their abilities are threatened due to the chronic and disabling nature of the disease and that they are unable to take care of themselves like before the disease. some ihtp, 1(3), 328-335, 2021 cc by-nc-nd 4.0 issn 2563-9269 333 researchers believe that perceived difficulty is the same as perceived ability, and it is possible to define it as the level of dependency on others (grimby et al., 1998). this perspective consists of some experiences and perceptions including dependency on others, the disabling nature of the disease, a variety of physical problems, and mental health problems. it should be considered that disability is not a personal characteristic, but it is a result of interaction between the health conditions of a person, personal factors related to them, and the surrounding environment (hoyle et al., 2012). another critical perspective revealed in this study was compatible adaptive responses which constitute three subcategories including acceptance of disability, improving health literacy, and enhancement of spiritual health. the results of a study by hammar et al. (2009) showed that patients could adapt themselves to their weakness and problems. a study performed on the perception of life experiences revealed that patients with stroke could accept the fact that they unable to return to the pre-stroke life conditions, and thus, they tend to cope with the new reality. however, to help themselves, they try to adjust their personal goals to carry out some activities based on their life before the stroke (sadler et al., 2017). researchers found that patients with chronic diseases tend to pass three adaptation stages. the first stage is facing the fact that they perceive or have experienced a disorder or defect. in the second stage, they recognize that the disease impacts their future; and finally, they accept their disease (casey et al., 2008). also, other studies demonstrated that from the perspective of survivors, recovery means the ability to return to their life before the stroke; commencing such activities creates in them a sense of control and identity (hoyle et al., 2012). if patients view themselves as unable to adapt to their self-care needs at home, then they have difficulty making arrangement and integrating services in their daily life at home, which may consequently reduce the quality of provisioned care and could result in the improper and inefficient allocation of resources (hammar et al., 2009; tornbom et al., 2017). findings of our qualitative descriptive study suggested that patients should be educated regarding the adapting strategies related to disabilities to motivate them and promote their self-care ability within the functional limitations associated with stroke. educating patients about performing tasks, practicing and doing exercises is useful in this regard. furthermore, applying strategies in terms of mental and spiritual practices increases the sense of hope among these patients (mckevitt et al., 2004). recognition and perception are essential to perceived self-care ability. perceived self-care ability requires patients to possess a certain level of knowledge and skills that could assist them in managing their disease in the chronic phase and at home (sun et al., 2017). the strategies related to selfcare are affected by various mental-social, economic, cultural, and environmental factors. also, most behaviors related to health care are influenced by peoples’ beliefs about the etiology of diseases (world health organization, 2009). one limitation of the present study is the fact that the patients’ residence would be a better location for conducting the interviews in the context of people’s daily life. however, with regard to some cultural problems in iran, participants were reluctant to be interviewed by the researcher at their home. so, we recommend future studies to address this issue in more detail. also, the study was conducted in a large city. therefore, it is suggested to conduct similar studies in other cities with diverse cultures and ethnicities. also, it is recommended to carry out the study in the chronic phases of other diseases and disabling diseases. because in most chronic diseases, having the ability to take care of oneself is important to promote patients’ physical function and mental health, as well as to reduce burden on family caregivers. the development of such individual skills prevents the establishment of permanent disabilities. conclusion self-care ability arisen from the perception, experiences, and real assumptions of patients with stroke in the chronic phase (patients were 1-month post-acute phase) are of great importance. patients have identified limited knowledge about self-care and reliance on family caregivers for engagement in daily activities. patients and family caregivers’ knowledge and needs should be considered when designing, implementing, and evaluating nursing interventions and rehabilitation programs. ihtp, 1(3), 328-335, 2021 cc by-nc-nd 4.0 issn 2563-9269 334 the results of this study show that patients with stroke face many problems, one of which is the inability to take care of themselves. discharge of these patients from the hospital to the home requires continued care. nurses should assess patients’ selfcare ability, instruct them of strategies to promote self-care and of resources to support patients’ engagement in self-care at home, with the ultimate goal to avoid complications requiring rehospitalization. references bahrampouri, s., khankeh, h. r., & dalvandi, a. (2013). the study of diagnosis status and, transfer time of stroke patients transferred by pre-hospital emergency medical system (ems) to vali-asr hospital in arak city. health in emergencies and disasters, 1(1), 0-0. http://hdq.uswr.ac.ir/article-1-39-en.html brown, t., mapleston, j., nairn, a., & molloy, a. (2013). relationship of cognitive and perceptual abilities to functional independence in adults who have had a stroke. occupational therapy international, 20(1), 1122. https://doi.org/10.1002/oti.1334 brucker, m. c. (2018). the importance of self-care for nurses. nursing for women's health, 22(6), 439-440. https://doi.org/10.1016/j.nwh.2018.10.002 casey, d., murphy, k., cooney, a., & o'shea, e. (2008). patient perceptions having suffered a stroke in galway [article]. british journal of community nursing, 13(8), 384-390. https://doi.org/10.12968/bjcn.2008.13.8.307 32 dalvandi, a., khankeh, h., bahrampouri, s., ebadi, a., passandeh, h., sari, h. n., faraji, f., & rahgozar, m. (2014). designing iranian prehospital stroke scale. medical journal of the islamic republic of iran, 28, 118. ekstrand, e., rylander, l., lexell, j., & brogårdh, c. (2016). perceived ability to perform daily hand activities after stroke and associated factors: a cross-sectional study. bmc neurology, 16(1), 1-9. graneheim, u. h., & lundman, b. (2004). qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. nurse education today, 24(2), 105-112. grimby, g., md, p., andren, e., bsc, o. t., daving, y., msc, o. t., & wright, b. (1998). dependence and perceived difficulty in daily activities in community-living stroke survivors 2 years after stroke: a study of instrumental structures. stroke, 29(9), 1843-1849. http://ovidsp.ovid.com/ovidweb.cgi?t=js&pa ge=reference&d=ovftc&news=n&an=00007 670-199809000-00017 hammar, t., perälä, m. l., & rissanen, p. (2009). clients' and workers' perceptions on clients' functional ability and need for help: home care in municipalities [article]. scandinavian journal of caring sciences, 23(1), 21-32. https://doi.org/10.1111/j.14716712.2007.00582.x hoyle, m., gustafsson, l., meredith, p., & ownsworth, t. (2012). participation after stroke: do we understand all the components and relationships as categorised in the icf? [article]. brain impairment, 13(1), 4-15. https://doi.org/10.1017/brimp.2012.9 jafari-golestan, n., hosseini, m., dalvandi, a., fallahikhoshknab, m., ebadi, a., rahgozar, m., & sidani, s. (2019). determining the consequences of perceived self-care ability in stroke patients living at home: a qualitative study in iran. archives of neuroscience, 6(4). jang, d. e., & shin, j. h. (2019). self-care performance of middle-aged stroke patients in korea. clinical nursing research, 28(3), 263-279. https://doi.org/10.1177/1054773817740670 jones, f., & riazi, a. (2011). self-efficacy and selfmanagement after stroke: a systematic review. disability and rehabilitation, 33(10), 797-810. kristensen, m. a. t., hølge-hazelton, b., waldorff, f. b., & guassora, a. d. (2017). how general practitioners perceive and assess self-care in patients with multiple chronic conditions: a qualitative study. bmc family practice, 18(1), 109. https://doi.org/10.1186/s12875-0170679-0 mckevitt, c., redfern, j., mold, f., & wolfe, c. (2004). qualitative studies of stroke: a systematic review. stroke, 35(6), 1499-1505. http://ovidsp.ovid.com/ovidweb.cgi?t=js&pa ge=reference&d=ovftg&news=n&an=00007 670-200406000-00070 https://doi.org/10.1002/oti.1334 https://doi.org/10.1016/j.nwh.2018.10.002 https://doi.org/10.12968/bjcn.2008.13.8.30732 https://doi.org/10.12968/bjcn.2008.13.8.30732 http://ovidsp.ovid.com/ovidweb.cgi?t=js&page=reference&d=ovftc&news=n&an=00007670-199809000-00017 http://ovidsp.ovid.com/ovidweb.cgi?t=js&page=reference&d=ovftc&news=n&an=00007670-199809000-00017 http://ovidsp.ovid.com/ovidweb.cgi?t=js&page=reference&d=ovftc&news=n&an=00007670-199809000-00017 https://doi.org/10.1111/j.1471-6712.2007.00582.x https://doi.org/10.1111/j.1471-6712.2007.00582.x https://doi.org/10.1017/brimp.2012.9 https://doi.org/10.1177/1054773817740670 https://doi.org/10.1186/s12875-017-0679-0 https://doi.org/10.1186/s12875-017-0679-0 http://ovidsp.ovid.com/ovidweb.cgi?t=js&page=reference&d=ovftg&news=n&an=00007670-200406000-00070 http://ovidsp.ovid.com/ovidweb.cgi?t=js&page=reference&d=ovftg&news=n&an=00007670-200406000-00070 http://ovidsp.ovid.com/ovidweb.cgi?t=js&page=reference&d=ovftg&news=n&an=00007670-200406000-00070 ihtp, 1(3), 328-335, 2021 cc by-nc-nd 4.0 issn 2563-9269 335 o'connor, m., moriarty, h., schneider, a., dowdell, e. b., & bowles, k. h. (2021). patients’ and caregivers’ perspectives in determining discharge readiness from home health [article]. geriatric nursing, 42(1), 151-158. https://doi.org/10.1016/j.gerinurse.2020.12.0 12 penta, m., tesio, l., arnould, c., zancan, a., & thonnard, j.-l. (2001). the abilhand questionnaire as a measure of manual ability in chronic stroke patients: rasch-based validation and relationship to upper limb impairment. stroke, 32(7), 1627-1634. http://ovidsp.ovid.com/ovidweb.cgi?t=js&pa ge=reference&d=ovfte&news=n&an=00007 670-200107000-00026 riegel, b., moser, d. k., buck, h. g., dickson, v. v., dunbar, s. b., lee, c. s., lennie, t. a., lindenfeld, j., mitchell, j. e., & treat‐jacobson, d. j. (2017). self‐care for the prevention and management of cardiovascular disease and stroke: a scientific statement for healthcare professionals from the american heart association. journal of the american heart association, 6(9), e006997. sadler, e., wolfe, c. d. a., jones, f., & mckevitt, c. (2017). exploring stroke survivors' and physiotherapists' views of self-management after stroke: a qualitative study in the uk. bmj open, 7(3). https://doi.org/http://dx.doi.org/10.1136/bm jopen-2016-011631 sidani, s., & doran, d. i. (2014). development and validation of a self-care ability measure. canadian journal of nursing research, 46(1), 11-25. silva júnior, e. j. d., balsanelli, a. p., & neves, v. r. (2020). care of the self in the daily living of nurses: an integrative review. rev bras enferm, 73(2), e20180668. https://doi.org/10.1590/0034-7167-20180668 speziale, h. s., streubert, h. j., & carpenter, d. r. (2011). qualitative research in nursing: advancing the humanistic imperative. lippincott williams & wilkins. sun, w., doran, d. m., wodchis, w. p., & peter, e. (2017). examining the relationship between therapeutic self-care and adverse events for home care clients in ontario, canada: a retrospective cohort study. bmc health services research, 17(1), 206. https://doi.org/10.1186/s12913-017-2103-9 tornbom, k., sunnerhagen, k. s., & danielsson, a. (2017). perceptions of physical activity and walking in an early stage after stroke or acquired brain injury. plos one, 12(3), e0173463. https://doi.org/10.1371/journal.pone.017346 3 welmer, a. k., von arbin, m., murray, v., widén holmqvist, l., & sommerfeld, d. k. (2007). determinants of mobility and self-care in older people with stroke: importance of somatosensory and perceptual functions [article]. physical therapy, 87(12), 1633-1641. https://doi.org/10.2522/ptj.20060349 wilkinson, a., & whitehead, l. (2009). evolution of the concept of self-care and implications for nurses: a literature review. international journal of nursing studies, 46(8), 1143-1147. world health organization. (2009). self-care in the context of primary health care report of the regional consultation bangkok, thailand, 7–9 january 2009 in new delhi: world health organization. https://doi.org/10.1016/j.gerinurse.2020.12.012 https://doi.org/10.1016/j.gerinurse.2020.12.012 http://ovidsp.ovid.com/ovidweb.cgi?t=js&page=reference&d=ovfte&news=n&an=00007670-200107000-00026 http://ovidsp.ovid.com/ovidweb.cgi?t=js&page=reference&d=ovfte&news=n&an=00007670-200107000-00026 http://ovidsp.ovid.com/ovidweb.cgi?t=js&page=reference&d=ovfte&news=n&an=00007670-200107000-00026 https://doi.org/http:/dx.doi.org/10.1136/bmjopen-2016-011631 https://doi.org/http:/dx.doi.org/10.1136/bmjopen-2016-011631 https://doi.org/10.1590/0034-7167-2018-0668 https://doi.org/10.1590/0034-7167-2018-0668 https://doi.org/10.1186/s12913-017-2103-9 https://doi.org/10.1371/journal.pone.0173463 https://doi.org/10.1371/journal.pone.0173463 https://doi.org/10.2522/ptj.20060349 ihtp, 1(1), 115-124, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 115 influence of preferences in intervention research: a scoping review souraya sidani1 1daphne cockwell school of nursing, ryerson university, ryerson university, toronto, ontario, canada. corresponding author: s. sidani (ssidani@ryerson.ca) abstract introduction: accounting for treatment preferences is beneficial in practice; it increases adherence to treatment and improves health outcomes. the randomized controlled trial (rct) is considered the most robust in generating valid evidence on effectiveness, yet it ignores participants’ preferences for treatment. this scoping review addresses three questions: 1) how are treatment preferences conceptualized in intervention research? 2) to what extent do treatment preferences affect participants’ enrollment in trials, withdrawal from the study, adherence to treatment, and outcomes? and 3) what designs are used to account for treatment preferences in intervention evaluation research? methods: the first five steps of the scoping review methodology framework were applied as follows: 1) identifying the research questions; 2) searching medline, cinahl and psychinfo; 3) selecting articles that evaluated interventions and accounted for preferences in the study design; 4) charting data on the definition and the influence of preferences on enrollment, attrition, and treatment adherence and outcomes; and 5) summarizing findings. results: in total, 29 articles were included in the review. treatment preferences refer to choice of treatment; they are shaped by participants’ beliefs and appraisal of the interventions. evidence from prior reviews and primary studies indicated that offering participants the opportunity to choose and receive the preferred treatment enhances enrollment and reduces withdrawal in trials; however, the evidence regarding the influence of treatment preferences on adherence to treatment and improvement in outcomes is inconclusive. designs that account for treatment preferences include: rct, rct with a comprehensive cohort, partially randomized preference trial, and two-stage partially randomized trial. conclusion: the results highlight the benefits of accounting for treatment preferences in enhancing enrollment and reducing attrition in intervention evaluation research, and the need for a systematic method for assessing preferences. keywords enactment, enrollment, outcome, preferences, preference trials, withdrawal introduction person-centeredness is increasingly recognized as the core of high-quality healthcare in primary, acute, and long-term care settings (van belle et al., 2020). the application of person-centeredness involves the engagement of persons in the identification and prioritization of their health problems, and in the treatment selection process (wolf et al., 2017). the treatment selection process is collaborative, whereby healthcare providers inform people of alternative treatments or interventions for managing a health problem, discuss the benefits and risks of each intervention under consideration, explore the people’s preferences for treatment, and provide the intervention of choice (donovan et al., 2018; sidani & fox, 2014). several benefits of accounting for treatment preferences have been reported in practice, including: enhanced people’s experiences with healthcare, increased initiation and adherence to treatment, and improved health outcomes (fors et al., 2018; ren et al., 2019). intervention research is focused on demonstrating the effectiveness of interventions in preventing and/or managing health problems. the experimental or randomized controlled trial (rct) design is considered the most robust or reliable in generating valid evidence on effectiveness (holm et al., 2017). however, the experimental or rct design ignores issn 2563-9269 116 participants’ preferences for treatment which, as reported previously, influence adherence to treatment and improvement in outcomes. preference trials have been introduced as an alternative (to the rct) designs to account for participants’ preferences in treatment allocation. accounting for preferences is expected to enhance enrollment in trials, reduce attrition, and promote treatment adherence and outcomes (bradley-gilbride & bradley, 2010). although the use of preference trials is on the rise, there is limited clarity on the conceptualization of preferences and its impact on outcomes. purpose this scoping review was conducted to generate an understanding of preferences and to summarize evidence on their influence on enrollment, withdrawal, and treatment adherence and outcomes. the findings can guide the design and evidence on the utility of preference trials in evaluating health interventions. methods a scoping review method was used because it is most suited for synthesizing available knowledge that addresses descriptive exploratory research questions. the first five steps of the scoping review method framework, originally outlined by arksey and o’malley (2005), and then refined by colquhoun et al. (2014), were applied. the first step consisted of identifying the research questions. this scoping review addressed the following questions: (1) how are treatment preferences conceptualized in intervention research? (2) to what extent do treatment preferences affect participants’ enrollment in intervention evaluation studies or trials, withdrawal from the study, adherence to treatment, and achievement of beneficial outcomes? ihtp, 1(1), 115-124, spring 2021 cc by-nc-nd 4.0 (3) what designs are used to account for treatment preferences in intervention evaluation research? the second step involved the conduct of a literature search. the bibliographic databases, medline, cinahl and psychinfo, were searched using a combination of the following keywords: preferences, choice, treatment, intervention, therapy, and research or evaluation. the search was limited to peer-reviewed articles, published in english, from january 2010 to march 2020. the third step entailed the selection of relevant articles. articles were included if they reported on: 1) an intervention evaluation study, using randomized or preference-based methods for assigning participants to treatment; or 2) literature reviews (i.e., narrative, systematic, or meta-analytic) of studies or trials that investigated the impact of treatment preferences on participants’ enrollment, withdrawal, adherence to treatment, and outcomes assessed at post-test. there were no restrictions on the type of interventions evaluated as well as on the population and setting. the fourth step focused on data charting. a table was created to document the following data extracted from the selected articles: authors and year of publication (to describe the studies); conceptual and operational (i.e., measures) definitions of treatment preferences; factors shaping treatment preferences (to address the first research question); results reflecting the impact of treatment preferences (to address the second research question); and the design used (to address the third research question). the impact of treatment preferences was operationalized into: 1) enrollment rate, that is, the percentage of eligible participants who consented; 2) withdrawal rate, that is, the percentage of consenting participants who dropped out of the study; 3) adherence to treatment, that is, the percentage of participants who were engaged and enacted the treatment or who reported high attendance and compliance with the treatment recommendations; and 4) outcome, that is, the mean score on the respective outcome measure completed at post-test. the designs used were categorized into rct or preference trials. the extent to which treatment preferences influenced enrollment, withdrawal, issn 2563-9269 117 adherence, and outcomes was indicated by results showing differences between participants who: 1) were assigned to treatment randomly or by preference, or 2) did or did not receive an intervention that matched their preference. the fifth step involves summarizing and reporting the findings. results the search yielded 41 articles. after initial review of the full articles, 12 were excluded because they either did not provide either a definition of preferences or results pertaining to the influence of preferences on enrollment, withdrawal, adherence, or outcomes. in total, 29 articles met the selection criteria. ten articles were found that presented definitions of and discussed factors shaping treatment preferences. relevant points were summarized and integrated into a conceptualization of treatment preferences. in total, 10 reviews and 9 primary studies reported on the impact of treatment preferences. the reviews included 3 narrative reviews, 4 systematic reviews, and 3 meta-analyses. the findings of the reviews and primary studies were synthesized to determine the influence of preferences on enrollment, withdrawal, adherence, and outcomes. pertinent information was extracted from these reviews to describe designs used in evaluation research to account for treatment preferences. the findings of this scoping review are presented for each question. 1) how are treatment preferences conceptualized? treatment preferences refer to participants’ choice of an intervention among alternative ones; that is, the preferred intervention is the one they want or desire to receive in order to address their health problem (joy et al., 2013). preferences are shaped by participants’ beliefs and appraisal of the interventions under consideration (clark et al., 2014). participants’ beliefs reflect their etiological model, that is, their understanding of the health problem, its determinants and consequences, as well as their perspective on appropriate approaches and strategies to remedy the problem (cohen et al., 2015). participants’ beliefs about the health problem emanate from their personal views and normative ihtp, 1(1), 115-124, spring 2021 cc by-nc-nd 4.0 (e.g., cultural) beliefs about it, whereas their beliefs about remedial strategies are informed by their perspective on appropriate treatments as well as their awareness and experience with available treatments. participants learn about available treatments from different sources such as the media, interactions with family and friends, and discussion with healthcare providers (mills et al., 2011). participants may have had personal or vicarious experience with specific treatments; that is, they may have actually applied an intervention or witnessed others’ use of it. they may favor the intervention reported as successful in addressing the problem. when presented with alternative interventions to manage a health problem, participants appraise them relative to a set of attributes they value. the attributes commonly reported of importance to participants include: 1) appropriateness in addressing the health problem, which reflects the degree to which an intervention is viewed as reasonable in managing the problem and is suitable to their life style and life circumstances; 2) potential effectiveness, which refers to the perceived usefulness of an intervention in addressing the problem; 3) perceived severity of the risks (i.e., adverse reactions or discomforts) that may be associated with an intervention; and 4) convenience, which is the extent to which an intervention is viewed as easy to apply and adhere to in their everyday life context (harrison et al., 2014; sidani et al., 2018; witticke et al., 2012). the general tendency is for participants to prefer treatments that are consistent with their beliefs and that are appraised as appropriate, effective, and convenient, with minimal risks (kwan, dimidjian & rizvi, 2010; prody et al., 2013). for example, participants who believe that depression is due to biological factors (e.g., chemical imbalance) choose antidepressants over psychotherapy (kemp, lickel & deacon, 2014; steidtmann et al., 2012). medications that are consistent with their beliefs and viewed as appropriate and convenient, despite their potential risks or side effects. treatment preferences influence participants’ engagement in intervention evaluation trials, through pathways that are elucidated in sidani and fox (2020). briefly, participants with preferences for any issn 2563-9269 118 treatment (experimental or comparison) under evaluation enroll in the trial. they are enthusiastic about the prospect of receiving the preferred treatment. however, in rcts, participants may be randomized to the most or least preferred treatment. the match or mismatch between the preferred and the allocated treatment affects their subsequent behaviors. those assigned to the treatment that matches their preference are motivated; they enact and adhere to treatment and therefore, experience the hypothesized improvement in the outcomes. in contrast, participants with mismatched treatment are disappointed. they may withdraw from the study to seek their preferred treatment outside the trial; alternatively, they continue their involvement in the study but do not initiate, enact, or adhere to treatment. consequently, they experience less-thanoptimal or no improvement in the outcomes. participants’ enrollment and withdrawal may influence the trials’ power to detect significant intervention effects and introduce potential confounding. participants’ level of adherence to treatment affects the estimates of the intervention’s effects, leading to possible type i or type ii error of inference regarding the success of the intervention in addressing the health problem (sidani & fox, 2020). 2) to what extent do treatment preferences affect enrollment, withdrawal, adherence and outcomes? the results of the reviews and the primary studies are summarized in table 1, and synthesized below to address this question. impact of treatment preferences on enrollment: one review (wasmann et al., 2019) and four primary studies (chalmers et al., 2018; kearny et al., 2011; kwan et al., 2010; mitchell-jones et al., 2017) compared enrollment rates in studies or arms of trials in which participants were assigned to treatment either randomly or on the basis of their preferences. the results were consistent, showing higher enrollment rates when participants were aware of the preference-based method for treatment allocation and were actually offered the treatment of choice. impact of treatment preferences on withdrawal: seven reviews examined the impact of treatment preferences on withdrawal, operationalized into attrition rates. five reviews (lindheim et al., 2014; ihtp, 1(1), 115-124, spring 2021 cc by-nc-nd 4.0 prody et al., 2013; swift, callahan & vollmer, 2011; swift et al., 2013; wasmann et al., 2019) reported lower attrition rates in studies or arms of trials that provided treatment on the basis of preference, and/or among participants who received matched treatment. one review (gelhorn, sexton & classi, 2011) found no significant impact, whereas another review (winter & barber, 2013) indicated inconsistent effects of preferences on attrition. impact of treatment preferences on adherence: one review and six primary studies investigated the influence of treatment preferences on adherence to treatment, which was operationalized as engagement or participation in the intervention activities, enactment of the treatment recommendations, and/or crossover to another intervention within the trial (reflecting non-adherence). the review (gelhorn et al., 2011) and four primary studies (cockayne et al., 2012; floyd & moyer, 2010; mitchell-jones et al., 2017; yancy et al., 2015) found no significant impact of providing the preferred treatment or receiving matched treatment on the rate or level of adherence. the results of two studies (hubacher et al., 2017; zoellner et al., 2019) showed increased engagement and/or enactment of treatment in participants with matched interventions. impact of treatment preferences on outcomes: ten reviews examined the impact of treatment preferences on outcomes. their results were mixed. the results of four reviews (delvery & le, 2019; lindheim et al., 2014; swift et al., 2011; 2013) showed larger improvements in outcomes for participants allocated to their preferred treatment than those randomized to treatment. the effect sizes ranged between 0.15 and 0.31. in contrast, four reviews (gelhorn et al., 2011; gemmell & dunn, 2011; prody et al., 2013; wasmann et al., 2019) found no significant impact of preferences on outcomes. in addition, two reviews (franco et al., 2013; winter & barber, 2013) reported inconsistent effects. 3) what designs account for treatment preferences? four designs have been used to examine the influence of treatment preferences in intervention research. their main features, advantages and disadvantages are highlighted. issn 2563-9269 119 rct: in rcts comparing two or more active treatments (i.e., excluding no-treatment control or placebo), participants are randomized to treatment. in addition, they are requested to indicate their preferences at baseline. information on preferences is used to categorize participants as having received matched or mismatched treatment. the matchmismatch variable is included in the analysis to determine the extent to which it affects participants’ withdrawal, adherence and outcomes. this design has the advantage of maintaining comparability of participants randomized to treatment groups, thereby minimizing possible confounding. however, assessing participants’ preferences yet ignoring it with randomization, has been viewed as unethical (sidani, 2015). rct with a comprehensive cohort: in this design, the plan is to randomize all participants to treatment. participants who agree to randomization, are randomly assigned to treatment, as is done in the conventional rct. those who decline randomization form the comprehensive cohort and are given the opportunity to choose and receive the treatment they desire (donovan et al., 2018). the advantage of this design is increased enrollment rates in the comprehensive cohort, and consequently the accrual of the required sample size. however, the number and the characteristics of participants in the comprehensive cohort may differ from those randomized, introducing potential confounding (gemmell & dunn, 2011). partially randomized preference trial: this design is similar to the rct with a comprehensive cohort design, except the pattern of assignment in that all participants are asked to indicate their preferences at baseline. those with no preferences are randomized to treatment, whereas those with preferences are allocated to the treatment of choice. although this design may enhance enrollment, reduce attrition, and improve treatment adherence and outcomes, it may result in differences between treatment groups on characteristics assessed at pretest, thereby introducing confounding. two-stage partially randomized or doubly randomized trial: this design was developed to mitigate the disadvantage of confounding that may be present with the partially randomized preference ihtp, 1(1), 115-124, spring 2021 cc by-nc-nd 4.0 trial and the rct with a comprehensive cohort. in the two-stage partially randomized trial, participants are randomized to the random arm or the preference arm of the trial. in the former arm, participants are randomly assigned to treatment, and in the latter arm, participants are allocated to the treatment of choice (sidani, 2015). discussion the results of this scoping review clarified that treatment preferences are informed by participants’ beliefs and appraisal of the interventions under evaluation. they highlight the increasing recognition of the role of preferences in intervention research, and the widening acceptance of trials that account for preferences in treatment allocation, as evidenced by the large number of studies and reviews included in this scoping review. overall, the results indicate that offering participants the opportunity to choose and receive the preferred treatment enhances enrollment and reduces withdrawal in intervention evaluation studies. however, the evidence regarding the influence of treatment preferences on adherence to treatment and improvement in outcomes is inconclusive. the exact mechanism explaining this pattern of findings is not clear. it may be partially attributed to the methods used for eliciting participants’ preferences. in most studies included in this scoping review and in the selected reviews, the methods used for informing participants of the interventions under evaluation and for engaging them in the interventions’ appraisal exercise are not described in detail. further, preferences were assessed with one item asking participants to identify the treatment of choice (wasmann et al., 2019). these less-thanoptimal methods may have contributed to illidentified or inaccurate preferences; that is, participants with limited understanding of the treatments and no opportunity to appraise the treatments for the attributes they value, could have hastily chosen a treatment. nonetheless, participants appreciate the opportunity to choose treatment, and are enthusiastic about the prospect of receiving the desired treatment. consequently, they decide to enroll and complete the evaluation study. however, with exposure and engagement in the treatment, participants may realize that the intervention they issn 2563-9269 120 receive is not consistent with their beliefs and does not meet their expectations, that is, it is not suitable to their lifestyle and is burdensome. as a result, they may not adhere to the treatment and therefore, do not experience improvement in the outcomes (mills et al., 2011). assessment of preferences should follow a systematic process, which involves three steps: step 1: providing clear and comprehensive information on each intervention under evaluation. participants need to understand each intervention’s goals (what it is set to achieve), components and activities (what it consists of), mode and dose of delivery (how it is provided), benefits (how effective it is in addressing the health problem), and risks (what are potential discomforts or adverse reactions). the information is foundational for appraising the interventions (sidani et al., 2018). step 2: engaging participants in the interventions’ appraisal exercise. participants are requested to rate each intervention relative to four attributes: perceived appropriateness, effectiveness, risks, and convenience, prior to making a choice (harrison et al., 2014). different, easy to administer measures have been validated (e.g., sidani & fox, 2020). step 3: inquiring about participants’ preferences. after appraising the interventions, participants are asked if they have a preference and which intervention they desire (sidani et al., 2018). conclusion assessment of preferences and provision of treatments that are consistent with people’s preferences are essential elements of personcentered care. accounting for preferences in intervention evaluation research is useful to enhance recruitment and enrollment, and reduce withdrawal, which are both required to accrue the required sample size and maintain adequate statistical power of the trial. accounting for preferences also generates evidence of relevance to practice, further supporting the benefits of the person-centered approach to care. to demonstrate the utility of assigning or providing the treatment of preferences in research and practice, a systematic method for assessing preferences should be applied. ihtp, 1(1), 115-124, spring 2021 cc by-nc-nd 4.0 references arksey, h., & o’malley, l. (2005). scoping studies: towards a methodological framework. international journal of social research methodology: theory and practice, 8 (1), 1932.https://doi.org/10.1080/1364557032000 119616. bradley-gilbride, j. & bradley, c. (2010). partially randomized preference trial design. in n.j. salkind (ed), encyclopedia of research design. usa: sage, vol 2, 1009-1015. chalmers, j.a., sansom-daly, u.m., patterson, p., mccowage, g. & anazodo, a. (2018). psychosocial assessment using telehealth in adolescents and young adults with cancer: a partially randomized patient preference pilot study. journal of medical internet research,7(8),e168.doi:10.2196/resprot.88 86. clark, m.d., determann, d., petrou, s., moro, d. & de bekker-grob, e. w. (2014). discrete choice experiments in health economics: a review of the literature. pharmaco economics, 32, 883-902. cockayne, s., hicks, k., kangombe, a.r., hewitt, c., concannon, m., thomas, k., hashmi, f., mcintosh, c., brierley, g., torgerson, d. & watt, i., on behalf of the evert team (2012). the effect of patients’ preference on outcome in the evert cryotherapy versus salicylic acid for the treatment of plantar warts (verruca) trial. journal of foot and ankle research, 5, 28 34. http://www.jfootankleres.com/content/5/1 /28. cohen, j.n., potter, c.m., drabick, d.a.g., blanco, c., schneider, f.r., liebowitz, m.r. & heimberg, r.g. (2015). clinical presentation and pharmacotherapy response in social anxiety disorder: the effect of etiological beliefs. psychiatry research, 28 (1), 65-71. doi: 10.1016/j.psychres.2015.04.014. colquhoun, h. l., levac, d., o’brien, k. k., straus, s., tricco, a. c., perrier, l., kastner, m. & moher, d. (2014). scoping reviews: time for clarity in definition, methods, and reporting. journal of clinical epidemiology, 67 (12), 1291-1294. https://doi.org/10.1080/1364557032000119616 https://doi.org/10.1080/1364557032000119616 http://www.jfootankleres.com/content/5/1/28 http://www.jfootankleres.com/content/5/1/28 issn 2563-9269 121 https://doi.org/10.1016/j.jclinepi.2014.03.0 13. delevry, d. & le, q.a. (2019). effect of treatment preference in randomized controlled trials: systematic review of the literature and meta-analysis. the patient patientcentered outcomes research, 12, 593–609. https://doi.org/10.1007/s40271-019-003796. donovan, j.l., young, g.j., walsh, e.i., metcalfe, c., lane, j.a., martin, r.m., tazewell, m.k., davis, m., peters, t.j., turner, e.l., mills, n., khazraghi, h., khera, t.k., neal, d.e., hamdy, f.c., protect study group (2018). a prospective cohort and extended comprehensive-cohort design provided insights about the generalizability of a pragmatic trial: the protect prostate cancer trial. journal of clinical epidemiology, 96, 3546. doi: 10.1015/j.jclinepi.2-17.12.019. floyd, a.h.l. & moyer, a. (2010). effects of participant preferences in unblinded randomized controlled trials. journal of empirical research on human research ethics: an international journal, 5 (2), 81-93. doi: 10.1525/jer.2010.5.2.81. franco, m.r., ferreira, m.l., ferreira, p.h., maher, c.g., pinto, r.z. & cherkin, d.c. (2013). methodological limitations prevent definitive conclusions on the effects of patients’ preferences in randomized clinical trials evaluating musculoskeletal conditions. journal of clinical epidemiology, 66, 586598. doi: 10.1016/j.jclinepi.2012.12.012. fors, a., blanck, e., ali, l., ekberg-jansson, a., fu, m., lindström kjellberg, i., mäkitalo, å., swedberg, k., taft, c. & ekman, i. (2018). effects of a person-centered telephonesupport in patients with chronic obstructive pulmonary disease and/or chronic heart failure – a randomized controlled trial. plos one, 13 (8), e0203031. gelhorn, h.l., sexton, c.c. & classi, p.m. (2011). patient preferences for treatment of major depressive disorder and the impact on health outcomes: a systematic review. primary care companion for cns disorders, 13 (5). doi: 10.4088/pcc.11r01161. gemmell, i. & dunn, g. (2011). the statistical pitfalls of the partially randomized preference ihtp, 1(1), 115-124, spring 2021 cc by-nc-nd 4.0 design in non-blinded trials of psychological interventions. international journal of methods in psychiatric research, 20 (1), 1-9. doi: 10.1102/mpr.326. harrison, m., rigby, d., vass, c., flynn, t., louviere, j., & payne, k. (2014). risk as an attribute in discrete choice experiments: a systematic review of the literature. patient, 7, 151-170. holm, m., alvariza, a., fürst, c-j., wengstrӧm, y., ǻrestedt, k., ӧhlen, j. & goliath, i. (2017). recruiting participants in a randomized controlled trial testing an intervention in palliative cancer care – the perspectives of health care professionals. european journal of oncology nursing, 31, 6-11. https://doi.org/10/1016/j.ejon2017.09.001. hubacher, d., spector, h., monteith, c., chen, p.l. & hart, c. (2017). long-acting reversible contraceptive acceptability and unintended pregnancy among women presenting for short-acting methods: a randomized patient preference trial. american journal of obstetrics & gynecology, 216, 101-109. https://doi.org/10.1016/j.ajog.2016.08.033, 10.1016/j.ajog.2016.08.033. joy, s.m., little, e., maruthur, n.m., purnell, t.s. & bridges, j.f.p. (2013) patient preferences for the treatment of type 2 diabetes: a scoping review. pharmaco economics, 31, 877-892. kearney, r.s., achten, j., parsons, n.r. & costa, m.l. (2011). the comprehensive cohort model in a pilot trial in orthopaedic trauma. bmc medical research methodology, 11, 39. doi:10.1186/1471-2288-11-39. kemp, j.j., lickel, j.j. & deacon, b.j. (2014). effects of a chemical imbalance causal explanation on individuals’ perceptions of their depressive symptoms. behaviour research & therapy, 56, 47-51. doi: 10.1016/j.brat.2014.02.009. kwan, b.m., dimidjian, s. & rizvi, s.l. (2010) treatment preferences, engagement, and clinical improvement in pharmacotherapy versus psychotherapy for depression. behavior research & therapy, 48, 799-804. lindheim, o., bennett, o., trentacosta, c.j. & mclear, c. (2014). client preferences affect treatment satisfaction, completion and clinical outcome: a meta-analysis. clinical psychology review, 34, 506-517. https://doi.org/10.1016/j.jclinepi.2014.03.013 https://doi.org/10.1016/j.jclinepi.2014.03.013 https://doi.org/10.1007/s40271-019-00379-6 https://doi.org/10.1007/s40271-019-00379-6 https://doi.org/10/1016/j.ejon2017.09.001 issn 2563-9269 122 mills, n., donovan, j.l., wade, j., hamdy, f.c., neal, d.e. & lane, j.a. (2011). exploring treatment preferences facilitated recruitment to randomized controlled trials. journal of clinical epidemiology, 64, 1127-1136. doi: 10.1016/j.jclinepi.2010.12.017. mitchell-jones, n., farren, j.a., tobias, a., bourne, t. & bottomley, c. (2017). ambulatory versus inpatient management of severe nausea and vomiting of pregnancy: a randomised control trial with patient preference arm. bmj open, 7, e017566. doi: 10.1136/bmjopen-2017017566. prody, s.l., burch, j., crouch, s. & macpherson, h. (2013). insufficient evidence to determine the impact of patient preferences on clinical outcomes in acupuncture trials: a systematic review. journal of clinical epidemiology, 66, 308-318.doi: 10.1016/j.jclinepi.2012.09.011. ren, j., li, q., zhang, t., li, x., zhang, s., wright, j., liu, h. & hua, z. (2019). perceptions of engagement in health care among patients with tuberculosis: a qualitative study. patient reference and adherence, 13, 107117. sidani, s. (2015) health intervention research: advances in research design and methods. london, uk: sage. sidani, s. & fox, m. (2020). the role of treatment perceptions in intervention evaluation: a review. science of nursing and health practices, 3 (2) article 4. article 1079. sidani, s. & fox, m. (2014). patient-centered care: a clarification of its active ingredients. journal of interprofessional care, 28 (2), 134-141. doi: 10.3109/13561820.2013.86519. sidani, s., epstein, d.r., miranda, j. & fox, m. (2018). psychometric properties of the treatment perception and preferences scale. clinical nursing research, 27 (6), 743-761. doi: 10.1177/1054773816654137. steidtmann, d., manber, r., arnow, b.a., klein, d.n., markowitz, j.c., rothbaum, b.o., thase, m.e. & kocsis, j.h. (2012). patient treatment preference as a predictor of response and attrition in treatment for chronic depression. depression & anxiety, 29, 896-905. swift, j.k., callahan, j.l. ivanovic, l.m. & kominiak, n. (2013). further examination of the psychotherapy preference effect: a metaihtp, 1(1), 115-124, spring 2021 cc by-nc-nd 4.0 regression analysis. journal of psychotherapy integration, 23 (2), 134-145. doi: 10.1037/a0031423. swift, j.k., callahan, j.l. & vollmer, b.m. (2011) preferences. journal of clinical psychology: in session, 67 (2), 155-165. van belle, e., giesen, j., conroy, t., van mierlo, m., vermeulen, h., huisman-de waal g, & heine, m. (2020). exploring person-centred fundamental nursing care in hospital wards: a multi-site ethnography. journal of clinical nursing, 29 (11-12):1933-1944. doi: 10.1111/jocn.15024. wasmann, k., wijsman, p., van dieren, s., bemelman, w. & buskens, c. (2019). influence of patients’ preference in randomised controlled trials. journal of crohn’s and colitis, 13 (issue suppl – 1), s517-s518. doi: 10.1093/ecco-jcc/jjy222.915. winter, s. e., & barber, j.p. (2013). should treatment for depression be based more on patient preference? patient preference and adherence, 7, 1047-1057. witticke, d., seidling, h.m., klimm, h-d. & haefeli, w.e. (2012). do we prescribe what patients prefer? pilot study to assess patient preferences for medication regimen characteristics. patient preference & adherence, 6, 679-684. wolf, a., moore, l., lydahl, d., naldemirci, ö., elam, m. & britten, n. (2017). the realities of partnerships in person-centered care: a qualitative interview study with patients and professionals. bmj open, 7, e016491. yancy et al., 2015) yancy, w.s., mayer, s.b., coffman, c.j., smith, v.a., kolotkin, r.l., geiselman, p.j., mcvay, m.a., oddone, e.z. & voils, c.i. (2015). effect of allowing choice of diet on weight loss. a randomized trial. annals of internal medicine, 162 (12), 805–814. doi:10.7326/m14-2358. zoellner, l.a., roy-byrne, p.p., mavissakalian, m. & feeny, n.c. (2019). doubly randomized preference trial of prolonged exposure versus sertraline for treatment of ptsd. american journal of psychiatry, 176, 287296. https://doi.org/10.1176/appi.ajp.2018.1709 0995. https://doi.org/10.1176/appi.ajp.2018.17090995 https://doi.org/10.1176/appi.ajp.2018.17090995 ihtp, 1(1), 115-124, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 123 table 1: summary of findings reported in 10 reviews and 9 primary studies author design interventions findings reviews delevry et al. (2019) meta-analysis varied effect on outcome (mean es = 0.18 overall, 0.23 for mental health outcomes) franco et al. (2013) systematic review varied effect on outcome (inconsistent) gelhorn et al. (2011) narrative review pharmacotherapy, psychotherapy no effect on attrition ↑ engagement in treatment no effect on enactment of treatment no effect on outcome gemmell & dunn (2011) narrative review varied no effect on outcome lindheim et al. (2014) systematic review varied ↓ attrition (or = 1.37) effect on outcome (es = 0.15) prody et al. (2013) systematic review acupuncture ↓ attrition no effect on outcome swift et al. (2011) meta-analysis pharmacotherapy, psychotherapy ↓ attrition (or = 0.59) effect on outcome (es = .31) swift et al. (2013) meta-analysis psychotherapy ↓ attrition effect on outcome (small) wasmann et al. (2019) systematic review varied ↑ enrollment ↓ attrition no effect on outcome (es = 0.09) winter & barber (2013) narrative review psychotherapy effect on attrition (inconsistent) effect on engagement in treatment (inconsistent) effect on outcome (inconsistent) primary studies chalmers et al. (2018) partially randomized preference trial different modes for delivering psycho-social assessment ↑ enrollment rate cockayne et al. (2012) rct + comprehensive cohort cryotherapy, salisylic acid no effect on attrition no effect on engagement in treatment no effect on enactment or adherence to treatment no effect on outcome floyd & moyer (2010) rct music no effect on adherence ihtp, 1(1), 115-124, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 124 hubacher et al. (2017) partially randomized preference trial short or long acting ↑ enactment of treatment effect on outcome (small) kearney et al. (2011) rct + comprehensive cohort rehabilitation ↑ enrollment no effect on outcome kwan et al. (2010) rct pharmacotherapy, behaviour ↑ enrollment ↓ attrition ↑ engagement in treatment no direct effect on outcome indirect effect on outcome, mediated by engagement in treatment mitchell-jones et al. (2017) rct + comprehensive cohort ambulatory vs inpatient management ↑ enrollment no effect on attrition no effect on engagement and enactment of treatment no effect on outcome yancy et al. (2015) two-stage partially randomized trial diet types no effect on attrition no effect on engagement in treatment no effect on enactment of treatment no effect on outcome zoellner et al. (2019) two-stage partially randomized trial pharmacotherapy, psychotherapy ↑ enactment of treatment effect on outcome (es: 0.40 to 0.72) 379 ihtp, 1(3), 379-389, 2021 cc by-nc-nd 4.0 issn 2563-9269 creation of a remote clinical practice curriculum for first year nursing students: reflections and lessons learned original research diane maceachern1, joyal miranda2, shari cherney,3 1school of community and health studies, centennial college, toronto, canada; 2daphne cockwell school of nursing, ryerson university, toronto, canada; 3sally horsfall eaton school of nursing, george brown college, toronto, canada corresponding author: d. maceachern (dmaceachern@centennialcollege.ca) abstract introduction: a problem-based learning approach using intentionally created client profiles and nursing care summaries formed the foundation of a remote clinical experience for first year undergraduate nursing students. methods: using carefully designed client scenarios, care summaries and active learning strategies, students were introduced to the nursing profession and provided the opportunity to develop skills in collaboration, critical thinking, clinical reasoning, and clinical judgement. results: based on discussion with students, the remote experience assisted in the development of several skills addressing communication, theoretical foundation, and critical thinking. as well, this experience allowed for the integration and application of newly acquired nursing knowledge, and an enhanced understanding of the role of the professional nurse. implications: significant lessons learned may serve other nursing programs around the world as we continue to navigate both current and future public health mandates while managing competing demands for in-person clinical practice sites. conclusion: faceto-face clinical experiences remain a critical component of comprehensive nursing education, however, given today’s climate and continued restrictions, a hybrid model, utilizing a remote platform, is worthy of further exploration. keywords baccalaureate, clinical judgement, clinical reasoning, critical thinking; education, nursing, problem-based learning introduction schools of nursing in canada and around the world have been creatively responding to the covid-19 pandemic as we continue to educate another generation of front-line healthcare providers. a loss of clinical nursing placement opportunities forced academia to swiftly pivot to remote learning. few schools in ontario offer a first-year clinical practicum for nursing students; and although our collaborative undergraduate nursing program, which takes place across three urban sites, faced the loss of this valuable educational learning opportunity; preserving the experience was essential. despite the loss of in-person practicums, students remain eager to learn about the practical application of nursing theory, employ a variety of newly learned therapeutic communications skills, demonstrate foundational practical skills, integrate, and apply developing skills in critical thinking and problem-solving, develop routines of performance and acquire reflective skills (henderson et al., 2012; papastavrou et al., 2016; yazdankhahfard et al., 2020). the aim of this paper is to describe the key features and lessons learned during the development of a remote clinical practice curriculum for first year nursing students. specifically, a course revision intentionally designed to support year one undergraduate nursing students who, due to the pandemic, had their in-person first year clinical practicum transformed to a remote clinical practicum was undertaken. to provide additional context, the first-year clinical practice course was revised and approved by the canadian association of schools of nursing (casn) for implementation during the winter 2021 semester. in its pre-pandemic format, this course was 380 ihtp, 1(3), 379-389, 2021 cc by-nc-nd 4.0 issn 2563-9269 designed as a 48 hour in-person clinical practicum, 8 hours per week, every other week, for 6 weeks, in a long-term care home (ltch) or hospital rehabilitation unit. this practicum provided students an opportunity to begin to develop their entry-topractice competencies including the development of skills necessary to create therapeutic relationships, assist patients with activities of daily living and utilize principles of infection prevention and control. students were currently engaged in both focused and comprehensive health assessments. as well, they began to learn about the need to provide safe, competent, compassionate, and ethical nursing care (college of nurses of ontario [cno], 2018). methods procedure to maintain the integrity of the remote clinical practice, the planning of this foundational practicum for first year nursing students had to address program outcomes, course outcomes, weekly learning goals/objectives and clinical competencies. purposeful connections to other requisite coursework and consideration of both delivery and student engagement was necessary. due to the pandemic, incoming students who had completed grade 12 remotely, had very limited exposure to practical nursing labs in the first semester. they attended all first semester nursing courses virtually and did not have an opportunity to engage with one another in-person. many had also never been inside an ontario hospital or long-term care home. this newly designed remote clinical practicum would occur weekly in a four-hour time block in groups with a ratio of one clinical instructor to 10 to 16 students. weekly objectives were modified from those created for the in-person practicum as students would no longer be able to “perform” or “demonstrate” psychomotor skills. bloom’s taxonomy of educational objectives was utilized for development of all learning objectives (bloom et al., 1956). consideration of the college of nurses of ontario (cno) professional standards throughout course development was essential in ensuring alignment with entry-to-practice standards. (cno, 2018). learning goals were contextualized to the new remote platform and a backward course design methodology was helpful in clarifying our focus in identifying and creating relevant and meaningful learning experiences and assessment/evaluation strategies that would be appropriate for year one students with limited experiences and exposure to the healthcare environment. this constructivist approach is learner-centred and begins with goal identification, proceeds to development of measurements of achievement and ends with selection of learning activities and strategies that will support learner acquisition of knowledge, skills, and judgement. (wiggins, 1998; fink, 2013; wiggins & mctighe, 2005). keeping the needs of our learners at the centre of the design of this remote practicum was critical for success. considering the current global health crisis and the immediate priority in ensuring that students understood the relevance of infection prevention and control (ipac) to their ongoing professional practice and personal safety, ipac education was reinforced at the outset. learning modules addressing personal risk assessment in both long-term care and acute care, control of the environment, chain of transmission, engagement with a virtual gaming simulation based on sars-cov-2, and proper use of personal protective equipment (ppe) remained in the evaluation of student learning. these content areas played an important role in mimicking a more realistic orientation to clinical practice. an existing reflective activity using the learn framework was also embedded into the student evaluation methods (college of nurses of ontario, 1996). learn (look back, elaborate, analyze, revise, new perspective) emphasizes thoughtful deliberation, critical thinking, change theory and aesthetic expression all of which support students in their development as reflective practitioners. video vignettes depicting interactions between nurses, interprofessional teams, patients, families and significant others were used as a basis for the assignment. students were asked to reflect and critically analyze the behaviours and best practices of the registered nurse in the vignette and consider areas of personal and professional development. in absence of real-life patient interactions, we hoped that this thirdparty reflection would provide some foundation for future reflective practice. to mimic inter-collaboration between healthcare providers, individualized nursing care planning was also included as a student evaluation measure. two student assessments, one group and one individual, involved the creation of comprehensive nursing care plans based on a given “client profile” and were guided by the components of the clinical judgement model (cjm) recognizing and analyzing cues, prioritizing hypotheses, generating solutions, taking action and evaluating outcomes. (sherrill, 2020; 381 ihtp, 1(3), 379-389, 2021 cc by-nc-nd 4.0 issn 2563-9269 tanner, 2006). to honour the principles of universal design for learning (udl) the nursing care plans were created as oral presentations, with an accompanying informal written component (center for applied special technology, 2018). the final and most challenging element of this backward design approach was creating relevant, rigorous, and engaging curriculum content. relying on the organic nature of a typical clinical placement, those experiences that naturally unfold in a real-life setting, was not possible. instead, a comparable and relatable experience for students needed to be created. the first step in this process included brainstorming, researching, and vetting any available resources. widely available and accessible external learning modules, videos, learning tools and virtual gaming simulations were explored by a team of faculty across the collaborative nursing program. it became apparent that most commercial learning suites were not suitable for a year one nursing student with limited nursing knowledge; most case studies and simulations were too detailed and required a certain level of prerequisite knowledge of which first year students do not have. eventually several appropriate interactive online modules with supporting resources and relevant youtube videos to support curriculum and keep students interested and engaged were identified. a selection of freely accessible virtual gaming simulations also proved to be valuable learning activities. client profiles: the main component of the practicum it was essential that intentional and integrated clinical experiences be generated for students. clinical experiences would have to be brought to students, as very little was going to occur naturally or spontaneously as it normally would in a face-toface clinical placement. the decision was made to move forward with a case study-based, problem-based learning (pbl) approach where students could work cooperatively together in the remote setting and learn from real-world scenarios. pbl helps foster strong communication, critical thinking, and self-directed learning skills, promotes teamwork and leadership and a development of lifelong learning skills all of which are essential to the nursing profession (cartwright et al, 2017; kong et al., 2014). sixteen “client profiles” of varying levels of difficulty; scenarios that could unfold with instructor support and serve to address a myriad of issues that students would commonly encounter in a typical initial clinical placement, were created. appendix 1 and appendix 2 for an example of a client profile case study and nursing care summary, respectively. course learning outcomes addressed during the first semester nursing courses were used when creating client case profiles and care summaries, with an aim to give opportunities for novice students to focus on communication skills necessary for building both therapeutic nurse-client relationships and foundational nursing skills. profiles were carefully crafted with consideration of principles of equity, inclusion, and diversity. each nursing care summary included relevant history and nursing care needs. profiles were introduced weekly with increasing complexity, to include comorbidities, additional psychosocial elements, and family dynamics. in addition, students examined advancing aspects of health assessment, communication skills and application of other theoretical knowledge. the introduction of each new weekly client profile was intentional and supported with other relevant theoretical concepts including caregiver support, patient-centred language, dementia care, equity, diversity, and inclusion in patient care. these client profiles became the main component of our remote clinical experience and together with detailed nursing care summaries, guided students in their critical thinking and development of clinical judgement. application of the cjm, using a guided template/worksheet and creation of comprehensive and individualized care plans, was emphasized (sherrill, 2020; tanner, 2006). this guided worksheet outlined the core elements of the cjm: recognizing and analyzing cues, prioritizing hypotheses, generating solutions, taking action, and evaluating outcomes. the goal was to introduce students to a diverse group of “patients” and “long-term care residents”; individuals requiring both physical and psychosocial support, with accompanying opportunities to support novice students as they built skills in personal organizational management, health assessment, critical thinking, problem-solving, clinical reasoning, and clinical judgement skills. clinical instructors would be instrumental in facilitating movement through each scenario and supporting application of the cjm. maintaining students’ focus and attention to course content required clarity and structure; it also demanded that clinical instructors who were responsible for supporting this learning think intentionally about how to motivate and engage students, prompt interaction, support students in their questioning and assess student learning. to enhance consistency and continuity in course 382 ihtp, 1(3), 379-389, 2021 cc by-nc-nd 4.0 issn 2563-9269 delivery, “road maps'' or prescriptive daily outlines were designed to support clinical instructors in facilitating a pbl approach, managing time in the four-hour block and in providing guidance in covering concepts/content designed to meet weekly learning objectives and overall practicum objectives. suggestions for supporting student learning were provided to the instructors on a weekly basis, including recommendations for introducing the client profiles and facilitating supportive learning activities, but room for flexibility and academic freedom existed. client profiles and unfolding case studies actively engaged our learners by providing opportunities for applying newly acquired concepts to scenarios, supporting knowledge transfer and increasing confidence (cleveland et al, 2015). narrative approaches, instructional storytelling and the sharing of real-life examples was also useful in the absence of actual clinical context (timbrell, 2017). clinical instructors, who are current practitioners, drew upon their clinical expertise to facilitate group discussion through the use of the cjm. data collection a course evaluation of the remote clinical practice using a google survey link took place on the last clinical day (week 12 of the students’ academic calendar). an announcement was posted on the student learning management system (blackboard/d2l/brightspace) to participate in the course evaluation. within the announcement a google survey link was provided. students were also notified that the survey was anonymous. the course evaluation was purposefully completed in week 12 after all student evaluations for the course had been completed. a limitation with the use of online surveys is that students may respond in a manner that is favorable as they may perceive their participation to reflect their course grade. hence, the course evaluation was deliberately delivered at the end of the course when all evaluations had been completed. the evaluation consisted of 5 sections using a 5point likert scale (strongly agree, agree, neutral, disagree, strongly disagree). the first section contained 8 questions inquiring about students’ experiences with the delivery of remote clinical practice; the second section consisted of 9 questions reflecting on students’ experiences with the content covered throughout the practicum; the third section consisted of 5 questions inquiring about students’ experiences with the various course evaluations, the fourth section inquired about the students’ evaluation of their clinical instructor using 10 questions. the last component of the course evaluation contained open-ended questions regarding what students would have liked to see more of or less of in either the content or delivery of the remote clinical course. research ethics board research ethics board (reb) approval was sought but not needed on the basis that course evaluations designed to evaluate student learning and/or assess the effectiveness of remote teaching modules to inform future course development are exempt from review and do not require reb approval. results a total of 368 students out of 490, resulting in a response rate of 75%, completed course evaluations. the overall results indicated that majority of students (88%, n=322) strongly agreed/agreed that the remote clinical course successfully introduced students to the profession of nursing as a practice discipline and 99% (n=344) indicated that the learning activities supported the course learning outcomes and fostered different types of interaction (i.e., instructor-student, content-student, studentstudent). in relation to the course content, students also strongly agreed/agreed that the course content allowed students to 1) develop an understanding of the role of the nurse within an interdisciplinary team (93%, n=340); 2) apply theoretical caring nursing skills (91%, n= 332 ), 3) apply communication strategies (91%, n= 333 ), 4) develop critical thinking strategies (89%, n= 327), and 5) apply theoretical foundational nursing skills (87%, n=320) to support client’s health and well-being. lastly, students strongly agreed/agreed that the client profiles and care summaries used throughout the course allowed students to integrate and apply knowledge from each of the first-year courses to their nursing practice (97%, n= 353). open-ended questions surveyed students on what they would have liked to see more or less of in either the content or delivery of the remote clinical course. overwhelmingly, students indicated that they would have preferred a shorter class duration rather than the 4-hour class time. students also indicated that they would have liked to see more interactive virtual simulations where they could “practice making clinical decisions regarding patients as well as videos that portray a day in the life of a nursing student” in order to really get a grasp of what nursing students do throughout a clinical shift in clinical practice year 383 ihtp, 1(3), 379-389, 2021 cc by-nc-nd 4.0 issn 2563-9269 1. for instance, one student indicated, “i would like to see more vgss [virtual gaming simulations] that simulate the real clinical experience more. with remote clinical, the main thing you want to see is what the actual clinical experience is like, especially if you haven't experienced it before”. overall, the results of the course evaluation indicated that the students perceived their remote clinical practice to have been a positive and enjoyable learning experience. students also indicated that in future revisions of the course, they would like to see more of a hybrid; in-person clinical practice linked to remote content delivery. this hybrid model would allow students to meet remotely to think through, review and build links from content to clinical experience. frequently in clinical practice there is not enough time set aside to discuss, reflect, and link content to the students' experiences in clinical as they occur. environments are usually fast-paced, and students are scattered among the unit assigned to different patients. clinical instructors were also provided with a course evaluation at the end of week 12 of the academic calendar. results aligned with student responses but remain beyond the scope of this paper as the aim of this paper is to describe the key features and lessons learned during the development of a remote clinical practice curriculum for first year nursing students with a focus on students' experiences. discussion lessons learned although students responded very favorably to this remote clinical experience, there were several important lessons learned. clear, frequent communication with both students and clinical instructors, comfort with technology and an ability to remain flexible and genuine with students is essential. students indicated that a four-hour block of time spent in a remote setting was too long. even though instructors used break out rooms, provided nutrient and other breaks as well as other techniques to engage and energize students, ‘zoom fatigue’ was identified as an ongoing challenge throughout the course and within the course evaluation. the student course evaluation suggested that the clinical profiles and accompanying nursing care plan summaries were valuable to this experience. using problem-based learning we hoped to support the development of clinical reasoning and critical thinking skills in our novice learners. development of sound clinical judgement skills takes time to cultivate; being able to critically think and carefully work through the various nursing scenarios and receive support from both instructors and peers in the development of comprehensive and individualized care plans using a problem-based learning approach demonstrates a promising benefit to students. dedicated time to support the client profiles with supportive concepts and the intentional integration of both prerequisite and corequisite nursing coursework was an advantage. implications the covid-19 pandemic forced schools of nursing and allied health care programs in canada and around the world to find alternative delivery formats as inperson student practicums were prohibited. lessons learned through our experience are highlighted in this paper and may provide key points when considering alternative student learning opportunities. as the covid-19 pandemic continues and the demand for remote curriculum delivery increases, the need for an alternative or hybrid format for learning will persist. the significant lessons learned and highlighted may serve to meet these ongoing challenges while maintaining academic program standards, and manage the competing demands for in-person practicum placements for students in health-related professional programs. conclusion although a remote clinical practicum is possible to create and may be beneficial to novice students, it will not take the place of a face-to-face clinical experience where students can interact with and care for real patients. feedback from the course evaluation suggests that a hybrid model that involves clinical time online to thoughtfully work through carefully and intentionally designed case studies combined with an opportunity to practically apply this learning in a face-to-face clinical environment holds promise for novice nursing students. additional research in the use of a hybrid model for early clinical learning is still needed. references bloom, b. s., englehart, m. d., furst, e. j., hill, w. h., & krathwohl, d. r. (1956). taxonomy of educational objectives: handbook 1. cognitive domain. longmans green. cartwright, p., bruce, j., & mcinerney, p. (2017). effects of problem-based learning on nurse 384 ihtp, 1(3), 379-389, 2021 cc by-nc-nd 4.0 issn 2563-9269 competence: a systematic review. journal of nursing education and practice, 7(4), 6775. https://doi: 10.5430/jnep.v7n4p67 center for applied special technology (2018). universal design for learning guidelines version 2.2. http://udlguidelines.cast.org cleveland, l., carmona, e., paper, b., solis, l., & taylor, b. (2015). baby boy jones interactive case-based learning activity. nurse educator, 40(4), 179-182. https://doi: 10.1097/nne.0000000000000129 college of nurses of ontario (1996). professional profile: a reflective portfolio for continuous learning. college of nurses of ontario (2018). entry-to-practice competencies for registered nurses, revised 2018. https://www.cno.org/globalassets/docs/re g/41037-entry-to-practice-competencies2020.pdf college of nurses of ontario (2018). professional standards, revised 2002. https://www.cno.org/globalassets/docs/pr ac/41006_profstds.pdf fink l. d. (2013). creating significant learning experiences: an integrated approach to designing college courses. john wiley & sons. henderson, a., cooke, m., creedy, d., & walker, r. (2012). nursing students' perceptions of learning in practice environments: a review. nurse education today, 32(3), 299-302. https://doi: 10.1016/j.nedt.2011.03.010 kong l., qin b., zhou y., mou s., & gao h. (2014). the effectiveness of problem-based learning on development of nursing students’ critical thinking: a systematic review and meta-analysis. international journal of nursing studies, 51(3), 458–469. https:/doi: 10.1016/j.ijnurstu.2013.06.009 papastavrou, e., dimitriadou, m., tsangari, h., & andreou, c. (2016). nursing students’ satisfaction of the clinical learning environment: a research study. bmc nursing, 15(1). https://doi: 10.1186/s12912-016-0164-4 sherrill, k. (2020). clinical judgement and next generation nclex® – a positive direction for nursing education! teaching and learning in nursing, 15(1), 8285. https://doi: 10.1016/j.teln.2019.08.009 tanner, c.a. (2006). thinking like a nurse: a research-based model of clinical judgment. journal of nursing education, 45, 204-211. https://doi: 10.3928/0148483420060601-04 timbrell, j. (2017). instructional storytelling: application of the clinical judgment model in nursing. journal of nursing education, 56(5), 305-308. https://doi: 10.3928/0148483420170421-10 wiggins, g. (1998). educative assessment. designing assessments to inform and improve student performance. jossy-bass. wiggins, g., & mctighe, j. (2005). understanding by design: expanded second edition. pearson education. yazdankhahfard m, ravanipour m, & mirzaei k. (2020). the gap in the clinical learning environment: the viewpoints of nursing students. journal of education and health promotion, 9:311. https://doi: 10.4103/jehp.jehp_438_20 https://www.cno.org/globalassets/docs/reg/41037-entry-to-practice-competencies-2020.pdf https://www.cno.org/globalassets/docs/reg/41037-entry-to-practice-competencies-2020.pdf https://www.cno.org/globalassets/docs/reg/41037-entry-to-practice-competencies-2020.pdf https://www.cno.org/globalassets/docs/prac/41006_profstds.pdf https://www.cno.org/globalassets/docs/prac/41006_profstds.pdf 385 ihtp, 1(3), 379-389, 2021 cc by-nc-nd 4.0 issn 2563-9269 appendix 1. client profiles client profile aki stevens aki lives at home in a small-town reserve just north of mississauga, ontario. she is a member of the mississaugas of the credit first nations. she was admitted to the city hospital 5 days ago to have surgery for her fractured left femur after a fall at home. she has type 2 diabetes and is supposed to follow a prescribed diet to keep her blood sugar levels stable. she does not like taking analgesics for her leg pain or going to physiotherapy. she is anxious to return home to her family. you are assigned to aki stevens today (0700 – 1200) aki stevens is a 66-year-old ojibwe woman. she speaks both anishinaabemowin and english. prior to hospitalization she was living with her family of 2 adult children and their spouses and 3 grandchildren. she has a close-knit community of friends, spiritual leaders, and other extended family. her family have brought in food for her since the surgery; however, they have been discouraged in doing this for aki to achieve stable blood sugar levels. aki tells you that she is not eating the food her family provides anymore and instead follows the hospital diet, but you notice her meals are largely left unfinished. although her family tells you that aki is normally a very social person at home, aki refuses to go to her rehabilitation classes now and keeps to herself. she does not seem to want to talk much. although she does not want any analgesics and says she is not in pain, you see her flinching and limping her way to the washroom. due to her surgery, she has a trapeze bar, trochanter roles, and a raised toilet seat to assist her positioning. she tends to lie on her back avoiding interactions with others and a small red area has begun to form over her sacrum. she can wash herself if brought a basin to the bedside. when you talk with her family, they share that aki feels out of place here. she knows that others stereotype indigenous persons as alcoholics and fears being labelled. she is not used to the food here yet is being pressured to eat it and according to her daughter is experiencing post traumatic stress disorder (ptsd). aki’s eldest daughter has also shared that aki is a residential school survivor and has told her family that she was often forced to eat unpleasant foods while attending the residential school. she feels stressed and admits to her family that she has pain, both physical and spiritual, with which smudging would normally help. she is anxious to go home; however, she will not be discharged until she can ambulate safely and has stable blood sugars. nursing care considerations: cultural values/beliefs care requires sensitivity to background and indigenous culture/cultural values/ceremonies eg. smudging practice for pain and stress while hospitalized. ptsd – residential school survivor social engagement with family, friends, spiritual leaders, and elders. interprofessional team collaboration with dietician re: culturally therapeutic meal plans that client will follow that also allows family to provide food; include family in all aspects of care. assisting with adls in hospital/encouraging independence where possible (set up aki with basin to wash her face/oral hygiene). encourage and assist bedside mobility; address potential issues re: skin care exercise/risk of deconditioning continuing pt/ot in the community. other community supports within the reserve. 386 ihtp, 1(3), 379-389, 2021 cc by-nc-nd 4.0 issn 2563-9269 appendix 2. client care summary patient name: aki stevens age: 66 sex: female gender: identifies female primary diagnosis: left femur fracture admit/transfer date: february 5, 2021 secondary diagnosis: type 2 diabetes from: home date completed: feb 5, 2021 mrsa/vre screening: completed – negative for mrsa and vre covid-19: completed negative allergies: no known allergies active infection: none isolation precautions (specify): (x) no ( ) yes – contact precautions medication reconciliation: (x) yes ( ) n/a date ordere d laboratory tests/diagnostic procedures: date done md/np notified to complete: marion laroc, np date notified: feb 5, 2021 feb 5, 2021 cbc, cr, egfr, platelet count, clotting time, a1c, fbs, trig feb 5,6,7, 2021 (rn to complete if not completed by md/np) history/previous surgery orif left femur february 5, 2021 living environment lives with extended family at home. mississaugas of the credit first nations, brantford, on next of kin/relationship/contact number 387 ihtp, 1(3), 379-389, 2021 cc by-nc-nd 4.0 issn 2563-9269 sally stevens 716-444-1234 (sister) communication (specify) speech: fluid, no deficits – understands and speaks english clearly hearing: intact, no deficits visual: requires glasses for reading language: anishinaabemowin, english nursing diagnoses for consideration 1) alteration in comfort, acute pain r/t post-operative status as evidence by non-verbal cues, physical behaviour (reluctance to participate in rehabilitation) 2) impaired physical mobility r/t post-operative pain and discomfort as evidenced by facial grimacing and slow movement 3) potential for ineffective individual coping r/t hospitalization, loss of independence and spiritual distress 4) potential impairment of skin integrity r/t immobility, poor positioning, and pressure 5) potential for impaired nutritional intake r/t lack of preferred foods 6) risk for falls r/t muscle weakness and deconditioning 7) knowledge deficit (e.g. diet) r/t lack of exposure to relevant resources date vital signs 02/13/20 t. p. r. &bp: q 4 hours csm: q shift o2 saturation: q 4hours cbgm: before meals tid or as ordered pain assessment: prn date nutrition/hydration 02/13/20 type: 1800kcal diet, high fibre specific concerns: n/a food allergies: none identified swallowing difficulties: none (x) self ( ) feed with assistance set up: none supplements: oral: n/a other (specify): n/a () tube feeds ( ) iv hydration () npo 02/13/20 interventions: • independent, diabetic and cfg meal planning (family teaching required) • encourage client to follow prescribed diet/consult with dietitian re: cultural preferences, ptsd may be triggered due to experience in residential schools date hygiene 02/13/20 (x) self care () bath with assistance () complete bed bath/shower () special mouth care: n/a, own teeth specific concerns: • assist with mouth care at bathroom sink after breakfast & at bedtime interventions: 388 ihtp, 1(3), 379-389, 2021 cc by-nc-nd 4.0 issn 2563-9269 • shower planned for postop day 5-protect incision and brace • assess ability to perform own adl's with am & pm care date skin integrity / skin care 02/13/20 ( ) special mattress (specify): specific concerns: • wash incision gently with soap and water • small stage 1 pressure ulcer on sacrum • sutures to be removed day 10 by visiting nurse ( ) turn: q2-3h (x) sutures wound location: left femur dressing type: dry frequency: daily 02/13/20 interventions: • assess skin integrity and record any significant findings or alterations • monitor sacral ulcer; braden scale: complete weekly and encourage turning and mobility • cleanse incision gently with soap and water daily, cover with dry dressing date mobility 02/13/20 (x) aat no strenuous exercise ( ) specify: limited ambulation, see interventions (x) assistive devices: • crutches • brace • trapeze bar () hoyer/total lift • impaired posture & balance from stroke • weakness on left side (x) rom: tid 02/13/20 interventions: • encourage client to do active rom of left leg • observe gait when using crutches • educate client about the importance of movement and exercise; use trapeze bar; brace to be kept on • encourage orthopedic physiotherapy classes • place trochanter in supine and fowler’s position • consult with family re: cultural interventions (e.g., smudging for pain relief) elimination 389 ihtp, 1(3), 379-389, 2021 cc by-nc-nd 4.0 issn 2563-9269 02/13/20 intake/output: () toilet with assistance specify: () constant supervision/incontinence () ostomy: type & location of stoma ng tube to: () std () intermittent suction *raised toilet seat specific concerns: () constipation () diarrhea () prostate problems date of last bm: see intake/output record foley catheter: n/a size: _________ balloon: _________cc date inserted: date to be changed: date to be removed: drains & irrigation needs (specify): () foley () condom catheter () silastic () cbi () other (specify): 02/13/20 interventions: independent safety & security 02/13/20 hearing: intact visual: presbyopia glasses specific concerns: () confusion /agitation (specify concern): () deficit (specify): hearing: visual: difficulty seeing near interventions: • needs glasses when reading. • continue to support and encourage patient. she is firm in her goal to return home • support family participation in care • cultural preferences re: care must be explored both in hospital and in planning for discharge home ihtp, 1(3), 315-327, 2021 cc by-nc-nd 4.0 issn 2563-9269 315 intersectionality framework for children with special healthcare needs: a scoping review laura spura rodriguez1 1school of social work, portland state university, usa corresponding author: l.s.rodriguez (rodrig29@pdx.edu) abstract introduction: the experience of children with special healthcare needs (cshcn) who hold multiply marginalized identities is underrepresented in healthcare research literature. even less research investigates the impact of multiple systems of oppression on cshcn experiences with healthcare providers, services, and systems. methods: to identify gaps and areas of future research, in early 2020, a scoping review of current cshcn healthcare literature that includes an explicit intersectionality framework or analysis was conducted. findings: based on the literature search results, there were zero peer reviewed articles within the cshcn research literature that included a framework or analysis of intersectionality. implication: cshcn have diverse lived experiences. an explicitly intersectional approach is best suited to creating programs, treatments, interventions, and service provision that address the truly complex needs of this population within the u.s. dominant culture. promising frameworks and future research needs are discussed. keywords children with special healthcare needs, intersectionality, population health, public health, social determinants of health introduction the experience of children with special healthcare needs (cshcn) who hold multiply marginalized identities is underrepresented in healthcare research literature. even less research investigates the impact of multiple systems of oppression on cshcn experiences with healthcare providers, services, and systems. therefore, this study contains several seminal works (e.g., bauer, 2014; bowleg, 2012) that influenced the field of public health and the field of healthcare, but have not necessarily been applied in recent years to cshcn healthcare research. children with special healthcare needs (cshcn) are defined as “those who have or are at risk of having a chronic physical, developmental, behavioral or emotional condition and who also require health and related services of a type or amount beyond that required by children generally” (mcpherson et al., 1998). cshcn are not a monolithic group. they are as diverse as the rest of the healthcare population. according to the centers for disease control and prevention, 1 out of every 5 children in the united states has a special healthcare need (2019). the prevalence of special health care needs among nonlatinx black children is 18%, which is higher than the total non-latinx black children population of 13.1% (abdi, seok & murphey, 2020). authors abdi, seok and murphey (2020), hypothesis this disparity may be due to identification bias or other types of discrimination such as racism. in addition, there are disparities among latinx cshcn depending on the primary language spoken at home. the prevalence of special healthcare needs among latinx cshcn who speak english as their primary language in the home is similar to that of nonlatinx white cshcn. however, the prevalence of a special healthcare needs is lower among latinx cshcn who are from primary spanish speaking households (p.11). this discrepancy may be related to ihtp, 1(3), 315-327, 2021 cc by-nc-nd 4.0 issn 2563-9269 316 language and cultural differences affecting assessment and diagnosis (blumberg, read, avila, & bethell, 2010). the term latinx is used in this study to be inclusive of all possible gender identities (torres, 2018). latinx indicates the variety of gender identities, which include non-gender binary and/or transgender cshcn. children with special with healthcare needs (cshcn) have varying levels of healthcare access, quality of services and experiences. these varying levels of access, quality of services and experiences tend to not be shared equally across the cshcn population. depending on race/ethnicity, gender, household income and other sociodemographic factors, cshcn with multiple marginalized identities may be disproportionately impacted. according to ngui and flores (2007), for example, black and latinx cshcn are disproportionately more likely to live in poverty, be uninsured, and lack a personal doctor or nurse. these authors also note that cshcn who are black and, in particular, female, are more likely to have unmet mental health care needs. the intersections of being black and female with special healthcare need(s) has implications for receiving or having access to mental health services. ngui and flores (2007) state that these disparities could be based on the diagnosis process and treatment of mental health conditions among girls versus boys, indicating a systemic gender bias issue. limited changed has occurred over the past decade within cshcn healthcare research to address these disparities. as noted by berry and colleagues (2010), over the past 25 years, great gains in health care delivered to cshcn have resulted from improved identification and classification of disabling conditions, new medical and surgical interventions, the individual with disabilities education act and the promotion of school and community inclusion programs. despite this progress, many cshcn do not reap the benefits as a result of socioeconomic, racial and ethnic health disparities (p.s112). social determinants of health (sdh) is a framework used within healthcare literature to examine how social factors (where people live, work, and play) may impact a person or a community’s health (about social determinants of health, n.d.). the sdh framework examines how these factors contribute to an individual’s health and well-being, instead of explaining how these health conditions came to be in a community or neighborhood. as raphael (2006) emphasizes, the sdh framework fails to consider the larger systemic picture that “illuminates the political, economic, and social processes by which the quality of sdh is shaped” (p.654). cheng, goodman and the committee on pediatrics released a policy statement (2015) acknowledging that children’s developmental stages and health are influenced by “[the] larger context of services and policy” (e226). they go on to discuss how children’s health trajectories are affected in the present and future by these and other outside influences. yet despite an acknowledgement of social factors or determinants on children’s health, social determinants of health within children’s healthcare research remains understudied (turney, hedwig & mehta, 2013) and attention to intersectionality (crenshaw, 1989) is almost nonexistent. social determinants of health identify the disparities based on social location and intersectionality looks at how power/systems shape social location. as bowleg (2012) states, “multiple interlocking identities at the micro level reflects multiple and interlocking structural-level inequality at the macro levels of society” (p.1267). these connections between health and social position call for more complex analyses that use an intersectional lens to account for the multiple identities of cshcn. need for intersectionality in healthcare research intersectionality “accounts for lived experience at neglected points of intersection—ones that [tend to reflect multiple subordinate locations as opposed to dominant or mixed locations” (mccall, p.1780, 2005). intersectionality is a framework for understanding multiply marginalized identities and the interactions between privilege and oppression based on social locations (crenshaw, 1989). the framework was developed by black feminist scholars and coined by legal scholar and activist kimberlé crenshaw. originally, intersectionality focused on race and gender, but its application has and can be used to examine other social positionalities as well. it views marginalized social identities as interlocking and dynamic to each other, not separate and in isolation from one another. ihtp, 1(3), 315-327, 2021 cc by-nc-nd 4.0 issn 2563-9269 317 if intersectional analysis was used in the ngui & flores (2007) study, for example, a deeper dive into systemic issues regarding gender, race, and mental health (special healthcare need) diagnoses could have been examined. understanding the importance of intersectionality of cshcn within the context of sdh is essential for the healthcare system to create interventions that are multidimensional, flexible to diverse populations, and examine the power dynamics of social conditions. in other words, as johnson (2019) states, if medicine is to maintain its authority over human problems and its role in finding solutions for those problems, it must expand its models to account for the diverse and polymorphous components of health and wellness or risk promoting partial understandings that eclipse lived experience and prevent comprehensive healing (p.529). existing research tends to treat children with special healthcare needs (cshcn) as an essentialized group (e.g., white, heteronormative and middleclass). by omitting social contextual factors of cshcn research implicitly insinuates that the cshcn population is monolithic, with similar struggles and oppressions, striving for identical representation (bell, 2006). essentializing the cshcn population “does not consider or address the rich diversity within disability communities— [for example] racial and ethnic diversity” (bell, 2006, p.276). the prevalence of a special healthcare need varies depending on a child and family’s social positionality, which can include, but is not limited to racial, ethnic, economic, and other sociodemographic characteristics. the current study, a scoping review conducted in early 2020, investigates the extent to which cshcn research has employed an intersectional framework. the review was guided by the question: to what extent is intersectionality being used within healthcare literature focused on children with special healthcare needs? method search terms and procedure at the beginning of 2020, a literature search was conducted using portland state university’s library search engine referred to as “primo.” portland state university is part of a consortium of academic libraries that contracts with the vendor ex libris to provide them with a common catalog of materials using their primo search engine. ex libris combines the information from individual libraries into a master list of resources known as the “primo central index” or “pci”. using primo, with the date range of 20152020, the following search was conducted using the terms (table 1): “children with special health care needs” and “intersectionality;” “children with special healthcare needs” and “intersectionality;” “cshcn and intersectionality;” cshn” and “intersectionality.” this search resulted in 36 articles (table 2). the 36 articles centered on the population of children with special healthcare needs; however, using these search terms, zero articles were returned that referenced intersectionality. zero articles contained the acronyms cshcn and cshn, and the term intersectionality (figure 1). search terms the same literature review using the same search terms was performed using google scholar as the search engine (table 1); this resulted in six items with the acronym cshcn and intersectionality within the body of the article (table 2). out of the six articles that appeared in the search, three were phd dissertations and one was a graduate project (unpublished), which included the term intersectionality. one dissertation specifically uses intersectionality as a lens for analysis within the study. one of the dissertations had the term intersectionality in the areas of special interest for the scholar but was not used in the study itself. two of the dissertations used the population term children with special healthcare needs or cshcn but the population of interest was cshcn caregivers and/or cshcn healthcare providers, and the third dissertation focused on african american families with a child diagnosed with autism. in addition, the three dissertations and graduate project were completed within the last three years (i.e., 20172019). the other articles retrieved from the search included two peer reviewed articles, one centered on the language use of providers with autistic patients, and the other article was centered on prenatal disability diagnosis. each of these articles used the term intersectionality within the body of the paper but were not specific to the cshcn population. ihtp, 1(3), 315-327, 2021 cc by-nc-nd 4.0 issn 2563-9269 318 results based on the literature search results, there are zero articles within the children with special healthcare needs (cshcn) research that include a framework and/or analysis of intersectionality. although the term intersectionality is not used in the healthcare literature focusing on cshcn, the search generated several articles focusing on one or two categories indicating social identities. for example, race and/or ethnicity and/or gender status are sociodemographic characteristics used within child health research (ngui & flores, 2007; bennett, rankin & rosenberg, 2012; chapman & tait, 2010; berry, bloom, foley & palfrey & 2010). much of this healthcare literature speaks to one or two sociodemographics of the multiply marginalized cshcn to discuss the reasons behind healthcare disparities. however, these research approaches “do not consider the unique intersections between the categories or intersectional positions within a category” (bauer, 2014, p.11). there is substantial evidence that suggests that there is more heterogeneity within groups than between groups (crenshaw, 1991; hancock, 2007). in addition, the current research is missing the examination of multiple overlapping power dynamics (privileges and oppressions) within the u.s. healthcare system, and their cumulative impacts on children with special healthcare needs who hold multiple marginalized identities. furthermore, power dynamics are excluded within the discussion and future research sections of studies. instead, studies focus on recommendations centered on behavior modification of what the patient (or patient’s family) can do, or education for providers to improve their knowledge of diverse cultures. discussion the primary goal of this scoping review was to determine to what extent literature on children with special healthcare needs includes an explicitly intersectional analysis. examining macrolevel oppressions reveals children of racial/ethnic minority status, children of single parent households, and children living at or below the poverty level experience the poorest health (bloom, cohen, & freeman, 2009). just as the macrolevel of oppressions are examined, so should the macrolevel of privilege. to examine oppressions, regardless of the context (micro/macro), means that there is an acknowledgment of the existence of privilege. there cannot be one without the other; oppression cannot exist without the existence of privilege. in other words, as windsong (2016) asserts, “intersectionality as an analytic framework shifts away from a sole focus on oppression and directs researchers to take a relationality perspective that examines both privilege and oppression” (p.137). for cshcn research to expand into the realm of intersectional analysis, a recognition of the influences of privilege on oppression should be included in healthcare research. questions that can be used to examine how privilege has impact on cshcn in healthcare research are: what cshcn are benefiting from the current cshcn research? what chscn families are being heard? how does the culture of white supremacy benefit some cshcn within the context of the healthcare system? what cshcn voices are missing from the research? intersectionality is derived from critical theory and includes the examination of the dynamics of power and how they affect a person’s lived experiences. children with special healthcare needs (cshcn) have diverse lived experiences and deserve a multidimensional examination within the healthcare literature to create better programs, treatments, interventions, and service provisions that address the complexity of their lives. multiple identities should not be seen as separate or fixed, but rather as interlocking components of one’s experiences and interactions within society and societal structures. examining macrolevel barriers or challenges, along with privileges, will create a different perspective in how solutions are created, research is designed and conducted, and what type of data is collected. as summarized by bowleg (2012), “intersectionality provides the discipline of public health with a critical unifying interpretive and analytical framework for reframing how public health scholars conceptualize, investigate, analyze, and address disparities and social inequality in health” (p.1267). there is a growing movement to guide intersectional healthcare research for children with special healthcare needs (cshcn). several scholars from different fields have written about the use of intersectionality both as a theoretical framework and practical application within research, both for qualitative and quantitative studies (e.g., mccall (2005), hankivsky & christoffersen (2008), choo and ihtp, 1(3), 315-327, 2021 cc by-nc-nd 4.0 issn 2563-9269 319 ferree (2010), bowleg (2012), bauer (2014), and evans (2019). the remainder of this paper will discuss these potential applications to research on cshcn. hankivsky & christoffersen (2008) and bowleg (2012) discuss the need for the application of intersectionality as a framework for population health, but within different healthcare contexts. hankivsky and christoffersen (2008) discuss the applicability of intersectionality within canadian population health research, noting that canada’s healthcare research is problematic even within their universal healthcare system. although much canadian healthcare research currently uses social determinants of health as a framework, the research does not respond to the foundational (p.271) causes of illness and disease, and still employs the use of master categories or essentialized grouping of sociodemographic characteristics excluding multiple interlocking categories at the microlevel and structural macrolevel causes of inequality. table 3 highlights hankivky’s and christofferson’s (2008) four areas where intersectionality is beneficial within the current healthcare research. likewise, bowleg (2012) identifies intersectionality as an important theoretical framework for public health within the united states healthcare system, and table 3 exhibits bowleg’s (2012) five ways an intersectional framework benefits public health research. impact of intersectionality on research in canadian and u.s. population / public health intersectionality as a framework is complex, but researchers have created starting points for managing the complexity and developing new ways to conceptualize research. researchers like mccall (2005), and choo and ferree (2010) identified approaches to manage some of these complexities. mccall’s complexity of intersectionality (2005) is a foundational article for conceptualizing and managing the framework within three different categories: intercategorical complexity, intracategorical complexity and anticategorical complexity. intercategorical complexity looks at the relationship of inequality among social groups and tries to explain or analyze the meaning between the social groups. intracategorical complexity focuses on a particular social group at a specific intersection, for example a particular group of women of color, e.g. queer latinx women. the last category within mccall’s analysis is anticategorical complexity. anticategorical complexity is managed by not reducing characteristics to a fixed category, but instead deconstructing the analytical categories. according to choo and ferree (2010) intersectionality theory includes three main core tenets for consideration in health research; 1) group centered, 2) process-centered, and 3) systemcentered. group-centered research aims to bring in the experiences of marginalized groups who have largely been absent from scholarship. processcentered research uses comparative analysis and a premise of relationality, and in doing so, demonstrates the context and comparisons of different intersections in order to better understand the structural and organizing processes of inequality. “system-centered research ‘sees gender and race as fundamentally embedded in, working through, and determining organization’ of systems of inequality” (choo & ferree, 2010, p. 135). evans (2019) provides examples and possible solutions for incorporating intersectionality within quantitative modeling, which includes structural determinants. green et al. (2017) provide two different directions for incorporating intersectionality within quantitative research in epidemiology by integrating intersectionality with multilevel analyses of contexts within which intersectional identities exist (e.g., school, neighborhoods, states) and second, in structural equation modelling (sem). both directions try to incorporate and measure the power structures within which groups (or communities) live, work and play. windsong (2016) provides an exemplar and outline for translating intersectionality into qualitative research, specifically within qualitative in-depth interviews. they discuss how they integrated core components of intersectionality while developing their research design and interview questions for the study. questions of complexity emerged around “how to incorporate intersectionality while allowing participants the opportunity to share their own lived experiences” (p.143). they discuss the often-dual nature of qualitative research, which involves either a design that directly addresses theoretical concepts or a design that allows for concepts to emerge without prompting. windsong (2016) ultimately chose to directly speak to intersectionality by using questions ihtp, 1(3), 315-327, 2021 cc by-nc-nd 4.0 issn 2563-9269 320 that address intersectional concepts. their discussion of pitfalls and challenges provide lessons for future qualitative intersectional research. a recent working document by the university of minnesota and the minnesota department of health titled intersectionality and trauma-informed application for maternal and child health research and evaluation: an initial summary of the literature (2019) reveals a critical (and needed) shift within public health and an acknowledgement of the need for an intersectional framework within the children with special healthcare needs (cshcn) research. the researchers conclude their study with five approaches to public health research and evaluation: 1) positionality matters, 2) reconsider methods and approaches, 3) integrate reflexivity, 4) acknowledge systems cause harm, and 5) take action for healing and justice (p.16). these five approaches to future research recognize that cshcn and their families have varied lived experiences, there are broader macrolevel implications to micro and mezzo level health outcomes, and there is a need to approach research with more complexity. in addition, the researchers highlight the need for self-reflexivity among researchers so that researchers identify their own social position and recognize how their values and ways of knowing influence their research. conclusion the primary goal of this review was to investigate the extent to which cshcn research has employed an intersectional framework. by reviewing the existing healthcare literature regarding cshcn and intersectionality, this review established that there is a gap in the literature that needs attention. in order to broaden current cshcn healthcare literature to be inclusive of the most marginalized cshcn, a shift in traditional research paradigms needs to occur. instead of essentializing all children with special healthcare needs (cshcn) in healthcare research, the use of a critical lens such as an intersectional lens, could prompt researchers to ask different questions and hopefully create a counternarrative in their work. contextual factors matter within healthcare research and using traditional research designs and methodologies will not capture the broader mezzo and macro considerations. researchers must examine what has been accomplished, who it has benefited, who has been left out, and what is still needed to more effectively serve and include the broader population of cshcn who have been historically invisible. acknowledgement the authors wish to acknowledge dr. thomas keller (portland state university) and dr. stephanie bryson (portland state university) for edits and comments on the manuscript. references abdi, f.m., seok, d., & murphey, d. (2020). children with special health care needs face challenges accessing information, support, and services. [issue brief]. child trends. https://www.childtrends.org/wpcontent/uploads/2020/02/cyshcnbrief_childtrends_february2020.pdf bagan, r.j. (2019). art therapy for differing abilities: self-advocacy in communities-of-care. [unpublished, graduate projects (nonthesis)]. concordia university of montreal, quebec, canada. bauer, g. r. (2014). incorporating intersectionality theory into population health research methodology: challenges and the potential to advance health equity. social science & medicine, 110, 10–17. https://doi.org/10.1016/j.socscimed.2014.0 3.022 blumberg, s., read, d., avila, r., & bethell, c. (2010). hispanic children with special health care needs spanish-language households. american academy of pediatrics, 126: s120s128. bowleg, l. (2012). the problem with the phrase women and minorities: intersectionality—an important theoretical framework for public health. american journal of public health, 102(7), 1267–1273. https://doi.org/10.2105/ajph.2012.300750 cheng, t. l., goodman, e., & committee on pediatric research. (2015). race, ethnicity, and socioeconomic status in research on child health. pediatrics, 135(1), e225-237. https://doi.org/10.1542/peds.2014-3109 choo, h. y., & ferree, m. m. (2010). practicing intersectionality in sociological research: a https://doi.org/10.1016/j.socscimed.2014.03.022 https://doi.org/10.1016/j.socscimed.2014.03.022 https://doi.org/10.2105/ajph.2012.300750 https://doi.org/10.1542/peds.2014-3109 ihtp, 1(3), 315-327, 2021 cc by-nc-nd 4.0 issn 2563-9269 321 critical analysis of inclusions, interactions, and institutions in the study of inequalities. sociological theory, 28(2), 129–149. como, d., florindez, l., tran, c.f., cermak, s., & duker, i. s. (2019). examining unconscious bias embedded in provider language regarding children with autism. nursing & health sciences, 1-8. crenshaw, k. (1989). demarginalizing the intersection of race and sex: a black feminist critique of antidiscrimination doctrine, feminist theory, and antiracist politics [1989]. university of chicago legal forum. crenshaw, k. (1991). mapping the margins: intersectionality, identity politics, and violence against women of color. stanford law review, 43 (6), pp. 1241-1299. davis, c. (2017). do characteristics of children and families influence reported caregiver burden?: a secondary data analysis of the 2009-2010 national survey of children with special health care needs. [master’s thesis, smith college, northampton, ma]. smith scholarworks: https://scholarworks.smith.edu/theses/188 6 evans, c. (2019). modeling the intersectionality of processes in the social production of health inequalities. social science & medicine, 226, 249-253. green, m.a., evans, c.r., & subramanian, s.v. (2017). can intersectionality theory enrich population health research? social science & medicine journal, 178. pp 214-216. hancock, a. m. (2007). intersectionality as a normative and empirical paradigm. politics & gender, 3(2), 248-254. hankivsky, o., & christoffersen, a. (2008). intersectionality and the determinants of health: a canadian perspective. critical public health, 18(3), 271–283. https://doi.org/10.1080/095815908022942 96 johnson, a. h. (2019). rejecting, reframing, and reintroducing. sociology of health & illness, 41, 517–532. https://doi.org/10. 1111/14679566.12829 mccall, l. (2005). the complexity of intersectionality. signs: journal of women in culture and society, 30(3), 1771–1800. https://doi.org/10.1086/426800 mccoy, a.d. (2018). autism spectrum disorder diagnosis from the african american parents' perspective [unpublished doctoral dissertation]. the university of texas at austin. mcpherson, m., arango, p., fox, h., lauver, c., mcmanus, m., newacheck, p. w., perrin, j.m., shonkoff, j.p. & strickland, b. (1998). a new definition of children with special health care needs. pediatrics, 102(1), 137-139. mckinney, c. (2016). selective abortion as moral failure? revaluation of the feminist case for reproductive rights in a disability context. disability studies quarterly, 36(1). http://dx.doi.org/10.18061/dsq.v36i1.3885 ngo, c. l. (2017). experiences of pediatric parenting stress and family support for caregivers of children with special health care needs or developmental disabilities [unpublished doctoral dissertation]. university of oregon. ngui, e.m., flores, g. (2007). unmet needs for specialty, dental, mental, and allied health care among children with special health care needs: are there racial/ethnic disparities? journal of health care for the poor and underserved, 18 (4), 931-949. https://doi.org/10.1353/hpu.2007.0102 office of disease prevention and health promotion. (2020). social determinants of health overview. https://www.healthypeople.gov/2020/topic s-objectives/topic/social-determinants-ofhealth raphael, d., (2006). social determinants of health: present status, unresolved questions, and future directions. international journal of health services, 36, 651–677. sheim, a.i. & bauer, g. r. (2019). the intersectional discrimination index: development and validation of measures of self-reported enacted and anticipated discrimination for intercategorical analysis. social science & medicine journal, 226, pp.225-235. https://doi.org/10.1016/j.socscimed.2018.1 2.015 shramko, m., pfluger, l., & harrison, b. (2019). intersectionality and trauma-informed application for maternal and child health research and evaluation: an initial summary of the literature [unpublished manuscript]. minnesota department of health. http://scholarworks.smith.edu/cgi/viewcontent.cgi?article=2963&context=theses http://scholarworks.smith.edu/cgi/viewcontent.cgi?article=2963&context=theses http://scholarworks.smith.edu/cgi/viewcontent.cgi?article=2963&context=theses http://scholarworks.smith.edu/cgi/viewcontent.cgi?article=2963&context=theses http://scholarworks.smith.edu/cgi/viewcontent.cgi?article=2963&context=theses https://scholarworks.smith.edu/theses/1886 https://scholarworks.smith.edu/theses/1886 https://doi.org/10.1080/09581590802294296 https://doi.org/10.1080/09581590802294296 https://doi.org/10.%201111/1467-9566.12829 https://doi.org/10.%201111/1467-9566.12829 https://doi.org/10.1086/426800 https://repositories.lib.utexas.edu/handle/2152/65907 https://repositories.lib.utexas.edu/handle/2152/65907 https://repositories.lib.utexas.edu/handle/2152/65907 http://dx.doi.org/10.18061/dsq.v36i1.3885 https://scholarsbank.uoregon.edu/xmlui/handle/1794/23157 https://scholarsbank.uoregon.edu/xmlui/handle/1794/23157 https://scholarsbank.uoregon.edu/xmlui/handle/1794/23157 https://scholarsbank.uoregon.edu/xmlui/handle/1794/23157 https://doi.org/10.1353/hpu.2007.0102 https://www.healthypeople.gov/2020/topics-objectives/topic/social-determinants-of-health https://www.healthypeople.gov/2020/topics-objectives/topic/social-determinants-of-health https://www.healthypeople.gov/2020/topics-objectives/topic/social-determinants-of-health https://doi.org/10.1016/j.socscimed.2018.12.015 https://doi.org/10.1016/j.socscimed.2018.12.015 ihtp, 1(3), 315-327, 2021 cc by-nc-nd 4.0 issn 2563-9269 322 https://www.health.state.mn.us/docs/com munities/titlev/itiappmchresearcheval.pdf the center for disease control. children and youth with special healthcare needs in emergencies. (2020). https://www.cdc.gov/childrenindisasters/ch ildren-with-special-healthcare-needs.html torres, l. (2018). latinx?. latin studies, 16, 283-285. https://doi.org/10.1057/s41276-018-0142-y us census bureau. (2020, february 17). most children younger than age 1 are minorities, census bureau reports [press release]. https://www.census.gov/ newsroom/releases/archives/ population/cb12-90.html. windsong, e. a. (2016). incorporating intersectionality into research design: an example using qualitative interviews. international journal of social research methodology, 21(2), 135–147. https://doi.org/10.1080/13645579.2016.12 68361 world health organization. (2020, march 2). about social determinants of health. https://www.who.int/gender-equityrights/understanding/sdh-definition/en/ https://www.health.state.mn.us/docs/communities/titlev/itiappmchresearcheval.pdf https://www.health.state.mn.us/docs/communities/titlev/itiappmchresearcheval.pdf https://www.cdc.gov/childrenindisasters/children-with-special-healthcare-needs.html https://www.cdc.gov/childrenindisasters/children-with-special-healthcare-needs.html https://doi.org/10.1080/13645579.2016.1268361 https://doi.org/10.1080/13645579.2016.1268361 ihtp, 1(3), 315-327, 2021 cc by-nc-nd 4.0 issn 2563-9269 323 table 1: database search terms database years search terms portland state university library primo search engine 2015-2020 “children with special health care needs” and “intersectionality”; “children with special healthcare needs” and “intersectionality”; “cshcn” and “intersectionality”; “cshn” and “intersectionality” google scholar 2015-2020 “children with special health care needs” and “intersectionality”; “children with special healthcare needs” and “intersectionality”; “cshcn” and “intersectionality”; “cshn” and “intersectionality” ihtp, 1(3), 315-327, 2021 cc by-nc-nd 4.0 issn 2563-9269 324 table 2: search results type of article article reference population methods intersectionality theory peer reviewed como, d. h., floríndez, l. i., tran, c. f., cermak, s. a., & stein duker, l. i. (2020). examining unconscious bias embedded in provider language regarding children with autism. nursing & health sciences, 22(2), 197-204. dental providers of children with autism part of a larger mixed-methods, sequential, explanatory design in which qualitative descriptive data were collected and analyzed intersectionality referenced in the literature review, not used as a theory for the study. peer reviewed mckinney, c. (2016). selective abortion as moral failure? revaluation of the feminist case for reproductive rights in a disability context. disability studies quarterly, 36(1). http://dx.doi.org/10.18061/dsq .v36i1.3885 feminist scholar commentary on abortion law. n/a the term intersectionality was used within a quote in the article. intersectionality theory was not used in the research itself. dissertation davis, c. (2017). do characteristics of children and families influence reported caregiver burden?: a secondary data analysis of the 2009-2010 national survey of children with special health care needs. [masters thesis, smith college, northampton, ma]. smith scholarworks: https://scholarworks.smith.edu /theses/1886 caregivers’ of cshcn this quantitative secondary data analysis of the 2009-2010 national survey of cshcn uses a cross-sectional design uses intersectionality theory throughout the research process (i.e., literature review, analysis). dissertation ngo, c. l. (2017). experiences of pediatric parenting stress and family support for caregivers of children with special health care needs or developmental disabilities [unpublished doctoral dissertation]. university of oregon. caregivers of cshcn quantitative descriptive research design intersectionality was used to describe authors research interest. http://dx.doi.org/10.18061/dsq.v36i1.3885 http://dx.doi.org/10.18061/dsq.v36i1.3885 http://scholarworks.smith.edu/cgi/viewcontent.cgi?article=2963&context=theses http://scholarworks.smith.edu/cgi/viewcontent.cgi?article=2963&context=theses http://scholarworks.smith.edu/cgi/viewcontent.cgi?article=2963&context=theses http://scholarworks.smith.edu/cgi/viewcontent.cgi?article=2963&context=theses http://scholarworks.smith.edu/cgi/viewcontent.cgi?article=2963&context=theses http://scholarworks.smith.edu/cgi/viewcontent.cgi?article=2963&context=theses http://scholarworks.smith.edu/cgi/viewcontent.cgi?article=2963&context=theses https://scholarworks.smith.edu/theses/1886 https://scholarworks.smith.edu/theses/1886 https://scholarsbank.uoregon.edu/xmlui/handle/1794/23157 https://scholarsbank.uoregon.edu/xmlui/handle/1794/23157 https://scholarsbank.uoregon.edu/xmlui/handle/1794/23157 https://scholarsbank.uoregon.edu/xmlui/handle/1794/23157 https://scholarsbank.uoregon.edu/xmlui/handle/1794/23157 https://scholarsbank.uoregon.edu/xmlui/handle/1794/23157 ihtp, 1(3), 315-327, 2021 cc by-nc-nd 4.0 issn 2563-9269 325 dissertation mccoy, a.d. (2018). autism spectrum disorder diagnosis from the african american parents' perspective [unpublished doctoral dissertation]. the university of texas at austin. african american parents of autistic children qualitative case study discusses intersectionality in discussion section. graduate projects (nonthesis) bagan, r.j. (2019). art therapy for differing abilities: selfadvocacy in communities-ofcare. [unpublished, graduate projects (non-thesis)]. concordia university of montreal, quebec, canada. art therapist working with people with disabilities bibliographical qualitative research design intersectionality referenced in the literature review. https://repositories.lib.utexas.edu/handle/2152/65907 https://repositories.lib.utexas.edu/handle/2152/65907 https://repositories.lib.utexas.edu/handle/2152/65907 https://repositories.lib.utexas.edu/handle/2152/65907 ihtp, 1(3), 315-327, 2021 cc by-nc-nd 4.0 issn 2563-9269 326 figure 1: flow diagram of the scoping review process ihtp, 1(3), 315-327, 2021 cc by-nc-nd 4.0 issn 2563-9269 327 table 3: impact of intersectionality on research in canadian and u.s. population/public health note: hankivky and christofferson (2008, pp. 275-278); bowleg (2012, pp.1271-1272) hankivky & christofferson bowleg 1) “intersectionality interrogates the relationship and meaning between different social categories and reveals power dynamics” (p.275); 1) provides unifying language and theoretical framework to facilitate a cohesive body of empirical and theoretical knowledge that could inform policy, practice, and interventions (p.1271); 2) intersectionality moves beyond the stagnant assumption that health outcomes are “caused by a set number of contributing causes” (p.276) and acknowledges that multiple factors are always at play; 2) prompts public health scholars to conceptualize and analyze disparities and social inequalities in complex and multidimensional ways that mirror the experiences of the populations who have the most adverse health outcomes (p.1271); 3) intersectionality does not use an additive approach, instead it “seeks to uncover the convergence of experiences, including multiple forms of discrimination and oppression” (p.276); 3) focuses on the macrolevel social-structural factors moving beyond the microlevel on health, which will facilitate the development of structural level interventions most likely to affect fundamental causes of social inequalities in health; 4) intersectionality is centered within critical theory, which has social justice as a central tenant. 4) takes the experiences of historically marginalized populations and centers them to facilitate and inform health promotion messages, interventions and policies (p.1272); 5) allows examination of multiple interlocking social identities across several categories beyond race and gender (p.1272). microsoft word ignagni copy edit.docx ihtp, 1(3), 336-344, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 336 activating the arts in death: what are the cultural implications for maid? esther ignagni1, eliza chandler1, kimberlee collins2 1school of disability studies, ryerson university, toronto, canada; 2dalla lana school of public health, university of toronto, toronto, canada corresponding author: e. ignagni (eignagni@ryerson.ca) abstract this discussion paper attends to subcultural production emerging at the intersection of medical assistance in dying (maid), death, disability, and other forms of precarious life. we think with disability arts, that is art created by disabled, mad, sick, and ill people that springs from the experience, politics, and culture of disability (frazee, 2008) and plays an important role in advancing disability rights and justice. we consider how this form of cultural production animates diverse and intersectional representations and political perspectives in ways that are invitational rather than didactic or prescriptive. by engaging three canadian disability performance art pieces that activate “crip theory” critical perspectives, we consider how these subcultural productions both indirectly support and extend disability rights endeavours to challenge the implementation of maid legislation in canada. we highlight how each of these works creates space for thinking about the relationship of death and dying in nuanced ways that promote disability life and vitality in a post-maid context, without slipping into ableist tropes. keywords culture, death, disability art, disability rights, medical assistance in dying background seeing death differently through disability after maid amidst the laughter of acclaimed disability artist liz carr’s play assisted suicide: the musical, rests a moment when the visual description informs the audience that dancers are on stage bearing flags. the description explains that the flags represent nations with legislation sanctioning medical assistance in dying: switzerland, colombia, united states, belgium, the netherlands, luxembourg, and, finally, canada. watching and listening in the audience, ignagni and chandler were sobered by this unwelcome international profile of home. in 2016, the medical assistance in dying act (maid), following the supreme court of canada’s decision to lift the prohibitions against physician assisted suicide, was passed into law. on march 11th, 2021, senate passed bill c-7, an amendment to the vulnerable person standard attached to canada’s maid legislation which broadens the category of health conditions that qualify a person for accessing assisted dying. this higher court ruling was motivated by and complies with a 2019 lower court ruling by the quebec superior court. subsequent to the passage of bill c-7, maid will be available to people with non-terminal conditions, people with psychiatric disabilities and diagnoses (in two years), and people under the age of 18 (in three years) (ccd, 2021). the amendment will also allow for people to elect for maid through advanced directives, and palliative or ihtp, 1(3), 336-344, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 337 home care services are no longer required prior to maids administration (ccd, 2021). although widely considered a legislative victory and a model for other countries, the passage of maid has not been uniformly celebrated. specifically, maid is regarded as a major defeat for disabled peoples and disability movement organizers, who see its significant implications for the treatment and understanding of disabled people within canada and internationally. assisted death debates have historically mobilized disability organizing internationally. distinct from moral critiques that begin in arguments about the sanctity of life, disability activists have decried maid’s implicit assumption that a disabled life is devalued, undesirable and unliveable (kafer, 2013; frazee, 2014; michalko, 2002; titchkosky, 2011). instead, we in the disability community have pointed to how maid exemplifies larger cultural conflations between death and disability. for instance, disabled people’s life chances have been systematically limited through the legacy of past eugenic practices of sterilization, institutionalization, and active extermination (shakespeare, 2010; malacrida, 2015). deemed genetically and reproductively inferior, disabled people have and continue to be constructed as threatening to the viability of future generations (maclaren, 1990; kevles, 1985; lombardo, 2008; dowbiggin, 1997), a construction and representation that spills over into contemporary political, social, and cultural arenas. social, educational and justice policy, linked with media representations of disabled people as ‘mad or bad’, construct disabled people as alternately violent, disorderly, a drain on resources and disruptive (giese, 2016; watts & erevelles, 2015). such understandings fuel calls to contain disabled bodyminds outside of public spaces of everyday life (e.g., abbas & voronka, 2014; parekh, 2014). moreover, disabled people are constructed in policy, service and research as intensifying the labour of others who risk debilitation through the precarious body-based care labour they perform (hande & kelly 2015; kelly 2016; gorman 2016; erevelles, 2011). these policies, including maid, crystallize the denial of the cultural presence of disability. such denial plays out, for example, in the creeping cultural genocide that results from the restriction of american sign language, british sign language and other signed language resources (paul & snoddon 2017; leduc 2016). another example of this cultural denial can be found in the maintenance and neglect of inaccessible spaces which fail to anticipate disability and difference, significantly limiting the possibilities for flourishment (titchkosky, 2011; preston, 2011). in effect, disabled people are not provided access to life in its myriad enactments making a life, public life, life-sustaining social and health care resources even as we are all granted greater access to death through maid. maid materially and symbolically promulgates disability as a form of social death, a mere temporal space of cultural stasis (hevey, 2010). at stake for disability activists is maid’s potential to harden collective understandings of disabled lives as undesirable and/or unliveable that close the public imagination to a vital life with bodymind difference. discussion disability advocates, activists, artists, and scholars have attempted to loosen the intertwining of death and disability by promoting our vitality. through bringing peripheral bodyminds to the centre of critical analysis and cultural production, disabled lives are rendered as valued, vital, and flourishing, in ways that are disruptive to normative neoliberal futures (e.g., mcruer 2006; chandler & ignagni, 2018). the conceptual grounding for this reframing is 'crip theory’ (mcruer, 2006; kafer 2013). the theory elaborates on the activist and historical power of the reclaimed term crip. crip, like queer, holds somewhat contradictory meanings: sometimes marking, other times refusing identities, sometimes working with and against identity politics, sometimes embracing and upholding disability, and other times working to think more than bodily impairment. crip theory provokes an unsettling analysis, bringing the non-normative bodies and lives that are typically purged from social, political, and cultural life to the very centre of analysis. the political impulse fuelling calls for “crip futurity” a future wherein disability is at the center of our analysis has been to turn away from discussions of death in favour of projects that work to protect disability life, projects such as the acquisition of disability rights and the proliferation ihtp, 1(3), 336-344, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 338 within the cultural sphere with positive representations of disability. materially, disability advocates point to maid’s tendency to divert attention away from scarce resources such as state investment in social housing, income supports, attendant and home care provision, community development, elder care and palliative services that promote the survival and flourishment of disabled and other marginalized people. consequently, discussions of death are elided while collective energies are turned to the struggle for ‘access to life’ redefining disabled lives as liveable, desirable, and pleasing. projects such as not dead yet, project value, or #whyus based in disability pride and vitality, specifically target the necropolitical underpinnings of maid by illuminating the generative dimensions of bodymind difference. the refusal to be understood and depicted dead as captured in the phrase ‘not dead yet’ is complicated by colonialism, racism, sexism, and genderism for many disabled and debilitated people. maid and the supportive and detracting movements it engenders, illuminate the unevenly dispersed life and death chances throughout disabled and debilitated populations (puar, 2017). movements resisting maid may risk calling for normative entry into non-disabled, non-debilitated privileged futures. fights for disability rights, for example, are often grounded in, seek access to and therefore contribute to neoliberal values, affirmations of a life that necessarily hinges on the eschewing of ‘undesirable’ lives. in other words, promoting disability vitality and resisting maid may involve “projection(s) of bodily capacity” (puar 2017, p. 17) that ultimately partakes in “slow death” (berlant, 2007), the wearing down and neglect of precarious populations. we might consider how efforts to redefine disabled lives as ‘not dead yet’ open populations up to new forms of capacitation as ‘objects of care’ such as populations living chronically with pain who are made profitable to pharmaceutical industries, care providers, and residential and other services that prolong the temporal period preceding physical death. for instance, maid distracts us from the monetization of end of life particularly through the extension of biological life with profitgenerating and painful chemotherapy that do little to fuel vitality but reinforce end of life as intolerable. maid offers a technological solution to the social problems that accompany bodymind difference, producing new vulnerabilities among those whose lives are already constructed as unworthy or burdensome on others. yet, in critiquing the dis/ableist imposition of death, the fullness of what can be learned about death using disability or body-mind difference as an entry to analysis has not been considered. in our work we’ve been asking how we can promote crip vitality and futurity in a post-maid context, without slipping into able-nationalist tropes and succumbing to ableist conceptions of death and dying. we’ve directed our attention to the subcultural production emerging at the intersection of maid, death, disability, and other forms of precarious life to surface “‘alternative histories’ necessary to a temporal and spatial restructuring of the future and present” (halberstam, 2011; fink, 2015, p. 168). in this paper, we engage disability art, that is, art by disabled, mad, sick, and ill people that springs from the experience, politics, and culture of disability (frazee, 2008). as we have written elsewhere (ignagni, et al 2019; chandler & ignagni, 2018), disability arts play an important role in advancing disability rights and justice for how it publicly animates diverse and intersectional representations and political perspectives in ways that are invitational rather than didactic or prescriptive. to this point, kelly & orsini (2016) place disability art in the centre of politics as an “artistic, cultural, and radical intervention” (p. 15), significantly contributing to activist struggles and debates in legal and policy spheres (p. 4). turning to disability arts and culture thinking about the capacity of art to allow nuanced and political dialogues about death and its relations, we turn to braidotti (2013) who writes, “art stretches the boundaries of representation to the utmost, it reaches the limits of life itself and thus confronts the horizon of death” (p. 107). from braidotti, we understand that art can bring us to the vantagepoint of death from which we can assume a critical distance from what we think of as ‘human life’, allowing us to interrogate the values we assign to our lives. applying braidotti’s words to the context of disability art, specifically cultural works that animate the intersection of disability, death, and vitality, we take up three works of canadian ihtp, 1(3), 336-344, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 339 disability arts and cultural practices that mobilize a minute focus on the monstrous mundane, embracing the leaky, abject dying body. we consider these artworks as forces through which to reimagine a present and future history that moves beyond ableist entanglements of disability and death and, in so doing, offer us new ways to think about what can be learned about death from disability. posting death: brianna hersey (2014-2018) from 2014 to her death in march 2018, phd candidate and artist brianna hersey’s public facebook feed offered us a way to intimately witness illness and dying. as ‘friends,’ we collectively followed her good and bad days, her personal practices of coping and her efforts to navigate a bodymind in flux. hersey references various physical and psychic troubles: pain, special dietary requirements, infection, and trauma, but never definitively offers (or receives) a diagnosis, avoiding pathographical pitfalls (couser, 1997). we collectively witness her experiences with the slowing down and wearing out of her physical body in a way that we might recognize as a crip ethic of care (erickson, 2020). care flows in all directions in her posts, demystifying illness and dying, offering selfaffirming testimony, offering a pedagogy of dying and caring for who will be mourning. hersey’s early posts feature images of her waiting for treatments, celebrating newfound energies as her health improved and pain was better managed. later, the postings more actively prepare for death: signing an organ donor card, taking up the bureaucracy of leaving one’s body to science and instructions for her funeral. hersey shows us her shunts, her medications, her hair loss, the loss of her body mass, demystifying the markers of ‘decline.’ through publicly documenting these changes in reflexive selfies, short videos, and written facebook posts, hersey offered a practical element to watching how one crips death: how we move the peripheral and private experience of caring for oneself and one’s dying body to the centre of social presentation of oneself via facebook. the process of physical change, of new dependencies, shifting functions and appearances are made visible, discussable, commendable, and shareable. hersey turned the surveillance of facebook on its head -cripping the surveillance of a surveyed body to provide opportunity for public intimacy. within hersey’s curation of selfportraits constructed through photographs, videos, messages and longer ‘journal’ entries death is not necessarily something to be hastened, but something that can be lived and held together in crip community communities connected to one another through disability and madness in interdependence. although crip communities are widely dispersed, we are digitally united through social media/facebook, offering virtual support and attention, recreating a new community commons. hersey speaks directly to us, her ‘friends’, offering gratitude for our messages, gifts and good wishes. through tears of disappointment at her imminent death, hersey offers us instructions for how to demonstrate our care for her send flowers, write cards, ask how she is doing, be sad and be grateful. even as she says goodbye, her posts are generative and creative, mapping new social mores around death and dying, giving rise to new beginnings and connections in digital space, rather than erasure. taking it to the grave: andrew henderson (2016) in another public art practice, taking it to the grave, queer canadian artist andrew henderson created a performative event, a “living funeral” at ace art inc. arts centre in winnipeg (beaudette, 2016). given weeks to live following a terminal cancer diagnosis, henderson undertook the art performance to create his own death rituals (henderson in beaudette, 2016). in one ritual, henderson invited the gallery visitors to share secrets with him, 100 of which he had tattooed onto his body, secrets which he would ‘take to the grave’ (beaudette, 2016). provocatively injecting humour into death alongside practical acceptance, henderson improvises with the ritualistic dimensions of tattoos to mark major life events, transitions, or entry into new communities. he brought a mundane campiness to the tattoo parlour, creating other spaces within the gallery where visitors/audiences could have their nails done (beaudette, 2016). this expansion of the parlour along with other intimate spaces into the gallery becomes a queer performance of community, a space in which individual bodies are self-stylized even as new intimate bonds – ‘eternal ties’ – with henderson are forged through the ihtp, 1(3), 336-344, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 340 sharing of secrets. taking it to the grave repositions death as relational, breaking down the loneliness and singular experience of death. henderson’s imminent death is generative, offering relief to those who share their secrets without provoking fear. more significantly, henderson renders death visible in ways that challenge the everyday ‘spectacularization of death’. deathnastics: performed by sean lee and carrie perreault. directed by alex bulmer. produced by esther ignagni, eliza chandler, and kim collins. 2018. finally, we turn to our own work in which we activate the arts, the sshrc funded project designing crip futures in the advent of medical assistance in dying in canada. designing crip futures uses death cafés and performances to provoke collective and activist reflections on death. we focus our discussion on deathnastics, one research-based performance emerging from this ongoing research in disability cultural approaches to death and dying using death cafés as method. deathnastics explores the intersection between disability, death, and vitality. motivated by responses of disability communities to the passage of canadian maid legislation, the project is an extension of our ongoing dedication to representing and advancing disability vitality through disability arts and other cultural practices. in part, the research used death cafés as an intentional space to gather disability community in conversation about political and personal responses to disability and death. typically, death cafés are loosely structured salon-style conversations related to death, which are often relegated to the private and personal realm, avoided, or silenced within western/ized communities (milles & corr, 2015; nelson, 2017). death café participants respond to prompting questions designed to elicit memories, stories, and reflections. we infuse these death cafes with a disability politic by including questions that draw out the relations between disability and death that we outlined in the first part of this paper. these death cafés create space to acknowledge the materiality of death in disability and mad communities, organize around representations of disability and death (e.g., public health statistics), foster intersectional and intra-movement coalitional work, and enter conversations about maid with one another and our closest allies. death cafés allow us to engage death in ways that are not individualizing and privatizing, but without an intimate proximity to death. more recently we have begun to prompt the conversations at our death cafes through short performances that bring to the fore key political issues by animating poignant elements within personal and public stories about death. we are working with deaf and disabled artists and dramaturgs to develop these performances. deathnastics was the first of this series. deathnastics was part of lucy pallawk and hazel meyer’s gymsick performance series at the bunker of contemporary art in early august 2018. we wanted to begin with a story that crystallized the disability rights critique of maid; an earlier talk by disability rights leader catherine frazee at the university of ottawa’s centre for health law, policy, and ethics in 2016 evoked archie rolland. rolland was a man living with als in a healthcare institution who accessed maid shortly after its legal passage. drawing from letters rolland wrote to the montreal gazette, frazee recounted how his unmet basic care needs – switching off the lights when he wanted to sleep, moving his foot when it was uncomfortable, and moistening his lips when they were dry -led to this decision. rolland knew that reports of his death would claim, in contradiction to his lived accounts, that the suffering which prompted him to access maid was caused by the pain of his impairment. archie rolland’s story demonstrates how access to adequate care and access to medical assistance in dying can be imbricated; if you have one, the other becomes unthinkable. in conversation with artist lindsay fisher, we decided to animate the quotidian act of moistening lips, through developing an instruction manual for how to moisten lips. delineating the minute self and other-oriented caring practices of lip moistening in its myriad forms and intentions, the manual became the basis of a short performance that would open, and intentionally animate, one of our death cafés. deathnastics began with instructions for how to moisten your lips to communicate ihtp, 1(3), 336-344, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 341 desire, with instructions like, “position your tongue at the corner of the mouth. first, slowly draw the tip of your tongue across the upper lip. repeat with the lower. ensure that the lick is slow-moving and sensual in action.” performers sean lee and carrie perreault, and, in a later iteration, jack hawk, would read aloud and perform these instructions. the performance then moved to the type of lip moistening that rolland required to live, with instructions like, “first, examine the person’s lips and mouth areas closely. pay special attention to the cracks of the mouth where skin can break down easily. these are the sites where life threatening infection can take hold”. as part of the performative, audience members were invited to ‘try their hand’ at lip moistening focusing on the technique of their choosing (moistening to communicate desire, moistening to achieve comfort or moistening to provide relief in acute and palliative care). deathnastics animated the slippage between disability, intimacy, and death, a slippage that was emphasized and explored in the death café conversations held afterwards. for audience members who initially giggled through the descriptions of lip moistening instructions and cheerfully smeared lip balm, honey or petroleum jelly, the café conversation took an abrupt change in tone. the audience members, mostly strangers, engaged in conversations that were first playful recollections about the longing for a kiss in the wake of a break-up, a mother’s wedding day advice to always be wearing lipstick to ‘keep your man,’ and childhood memories of being lipbalmed by a parent before being thrust into a canadian winter. the stories then moved to more sombre and critical accounts of the gendered demand to smile following surgery to remove a facial tumour; the challenge of securing state care to be adequately fed; and the pain and fear of visiting a publicly funded dentist with lifethreatening oral decay. these memories linked mouths, moistening and intimacy, enabling more sober collective reflection on the vulnerability of our bodies and selves. implications for maid at the start of this paper, we outlined the social and material implications of maid on disabled people and, generally, understandings of disability and body-mind difference. maid maintains our relationships to death as an individual and private matter and enshrines it in the law. we know very little in canada about the precise circumstances of the more than 8000 people who have elected to use maid since its legal passage in 2016. rhetorically, deaths via maid are constructed as upholding individual personhood and selfdetermination. moreover, maid reinforces the linkages between death and disability in somewhat contradictory ways. first, maid reinforces the conflation of death and disability, by positioning a disabled life as not meaningful and devalued, as a life not worth living. yet, maid also prevents the full witnessing of the life-limiting and lifethreatening conditions endured by many disabled people. even as maid promises a death with dignity, black, indigenous, migrant, poor and trans people many of whom are disabled or deemed ‘mentally ill’ continue to struggle and die under dehumanizing and undignified state neglect and direct violence (hunter-young, 2017; sontag, 2003; millian, 2015). by turning to the cultural practices by hersey, henderson and deathnastics and the community-based crip critical perspectives they raise, we attempt to think about death differently through disability. rather than serving as a justification for death, or as already dead, disability can teach us about the values given to life, or to particular lives. disability may push us to consider how quality of life is privileged against death. these performances take up death as relational and an opportunity, not a release from life but a release for the living. where maid signals the removal of oneself from the community, neatly relieving others and oneself of the unpredictability and excess of death, the three works presented above go in a different direction. they highlight how disabled and dying people care for others, largely through creating communities whether in the virtual, gallery or activist spaces. drawing again on braidotti’s (2013) work, these artists offer up death as a vantage point from which we can collectively interrogate life, including life at the boundary of death. these works create spaces – facebook comment boxes attached to posts, images, and videos of life in close proximity to death, living funerals, and death cafes — wherein we can have communal conversations about disability and death. they bring the ihtp, 1(3), 336-344, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 342 moments which surround death into the realm of public witnessing: hersey lays bare processes surrounding preparations for death in ways that lifts this temporal period out of strictly logistic and economic concerns; harrison creates queer death rituals which brings together community and invites collectivity through cultural production; and deathnastics animates the dialectic of death, intimacy, and care into public conversations. representing and engaging with death through disability enables intimacy with those who might otherwise be strangers and a privileging of much of what is rendered private: mess, bodily exposure, anger and despair, touch, and secrets. by bringing together strangers, a public audience, or a community around death, these performances “unwork” (mckitterick, 2011) the privatization that typically surrounds such matters in normative, western/ized culture. significantly, they work against this privatization, inviting conviviality by mediating the witnessing and effective engagement with one another’s mortality. conclusion disability teaches us that we can die as we live, with vulnerability, interdependence, and care. from these crip critical perspectives, we can come together in community and develop more nuanced politics around the ways that maid legislation crystalizes disability vitality and precarity. references abbas, j. & voronka, j. (2014). remembering institutional erasures: the meaning of history of disability incarceration in ontario. in liat ben-moshe, chris chapman & allison c. carey (eds.), disability incarcerated (pp. 121-138). new york: palgrave macmillan. beaudette, t. (2016, oct. 11). 'taking it to the grave': 28-year-old with terminal cancer plans performance art living funeral. cbc news. retrieved from: https://www.cbc.ca/news/canada/manito ba/taking-it-to-the-grave-28-year-oldwith-terminal-cancer-plans-performanceart-living-funeral-1.3799098 berlant, l. (2007). slow death (sovereignty, obesity, lateral agency). critical inquiry, 33(4), 754-780. bill c-14, an act to amend the criminal code and to make related amendments to other acts (medical assistance in dying), 42nd parliament, 1st session, canada, 2016, c. 3 (assented to 17 june 2016), sc 2016, c. 3. braidotti, r. (2013). the posthuman. cambridge: polity press. chandler, e., & ignagni, e. (2018). strange beauty: aesthetic possibilities for desiring disability into the future. in k. ellis, r. garland-thomson, m. kent, & r. robertson (eds.) interdisciplinary approaches to disability (pp. 255-265). new york: routledge. council of canadians with disabilities (2021, march 12). ccd disappointed by house of commons yes vote on bill c-7 (medical aid in dying). http://www.ccdonline.ca/en/humanrights/ endoflife/media-release-bill-c712march2021 couser, g. t. (1997). recovering bodies: illness, disability, and life writing. madison, wi: university of wisconsin press. dowbiggin, i. r. (1997). keeping america sane: psychiatry and eugenics in the united states and canada, 1880-1940. ithaca, ny: cornell university press. erevelles, n. (2011). disability and difference in global contexts: enabling a transformative body politic. new york: palgrave macmillan. erickson, l. (2020, june 17). thinking about and with collective care. cultivating collective care. https://www.cultivatingcollectivecare.co m/post/thinking-about-and-withcollective-care fink, m. (2015). don’t be a stranger now: queer exclusions, decarceration, and hiv/aids. in omisoore h. dryden and suzanne lenon (eds.), disrupting queer inclusion: canadian homonationalism and the politics of belonging (pp. 150-168). vancouver, bc: university of british columbia press. frazee, c. (2014, october 14). there can be dignity in all states of life. ottawa citizen. https://ottawacitizen.com/news/national/c ihtp, 1(3), 336-344, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 343 atherine-frazee-there-can-be-dignity-inall-states-of-life giese, r. (2016, june 20). why integration isn’t working for special needs kids—or their classmates. today’s parent. https://www.todaysparent.com/family/spe cial-needs/why-integration-isnt-workingfor-special-needs-kids-or-theirclassmates/ halberstam, j., & halberstam, j. (2011). the queer art of failure. durham, nc: duke university press. hande, m. j., & kelly, c. (2015). organizing survival and resistance in austere times: shifting disability activism and care politics in ontario, canada. disability & society, 30(7), 961-975. hevey, d. (2010). the enfreakment of photography. in l. davis (ed.), the disability studies reader (pp. 432-446). new york: routledge. hunter-young, n. (2017). artistic responses to the online proliferation of black death. paper presented at art and activism: resilience techniques in times of crisis. leiden, nl. gorman, r. (2016). disablement in and for itself: toward a ‘global’ idea of disability. somatechnics, 6(2), 249-261. kafer, a. (2013). feminist, queer, crip. bloomington, in: indiana university press. kelly, c. (2016.) disability culture and politics: the challenge of direct funding. vancouver, bc: university of british columbia press. kelly, c., & orsini, m. (eds.). (2016). mobilizing metaphor: art, culture, and disability activism in canada. ubc press. kevles, d. j. (1995). in the name of eugenics: genetics and the uses of human heredity (no. 95). harvard university press. leduc, v. (2016). “it fell on deaf ears” deafhood through the graphic signed novel as a form of artivism. mobilizing metaphor: art, culture, and disability activism in canada, 118. lombardo, p. a. (2008). three generations, no imbeciles: eugenics, the supreme court, and buck v. bell. baltimore, md: jhu press. malacrida, c. (2015). a special hell: institutional life in alberta's eugenic years. toronto, on: university of toronto press. mckittrick, k. (2011). on plantations, prisons, and a black sense of place. social & cultural geography, 12(8), 947-963. mclaren, a. (1990). our own master race: eugenics in canada, 1885-1945. toronto, on: university of toronto press. mcruer, r. (2006). crip theory: cultural signs of queerness and disability. university press. michalko, r. (2002). the difference that disability makes. philadelphia, pa: temple university press. million, d. (2013). therapeutic nations: healing in an age of indigenous human rights. tucson, az: university of arizona press. miles, l., & corr, c. a. (2017). death cafe: what is it and what we can learn from it. omegajournal of death and dying, 75(2), 151165. nelson, r. (2017). discussing death over coffee and cake: the emergence of the death café. ajn the american journal of nursing, 117(2), 18-19. parekh, g. g. (2014). social citizenship and disability: identity, belonging, and the structural organization of education. https://yorkspace.library.yorku.ca/xmlui/h andle/10315/28217 paul, j., & snodden, k. (2017). framing deaf children’s right to sign language in the canadian charter of rights and freedoms. canadian journal of disability studies, 6(1). preston, j. (2011, april 18). operation: stairbomb london. http://www.jeffpreston.ca/2011/04/18/op eration-stairbomb-london/ puar, j. k. (2017). the right to maim: debility, capacity, disability. durham, nc: duke university press. shakespeare, t. (2010). the social model of disability. in l. davis, (ed.), the disability studies reader (pp. 214-221). new york: routledge. sontag, s. (2003). regarding the pain of others. diogène, (1), 127-139. titchkosky, t. (2011). the question of access: disability, space, meaning. toronto, on: university of toronto press. ihtp, 1(3), 336-344, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 344 university of ottawa centre for health law, policy and ethics (2016). ottawa conference on medical assistance in dying 2016 – part 1. https://www.youtube.com/watch?v=qv w2yttfsrc watts, i. e., & erevelles, n. (2004). these deadly times: reconceptualizing school violence by using critical race theory and disability studies. american educational research journal, 41(2), 271-299. 368 ihtp, 1(3), 368-378, 2021 cc by-nc-nd 4.0 issn 2563-9269 head and neck cancer treatment and its sexual impact on quality of life: an integrative literature review review ricardo souza evangelista sant'ana1, ana dulce santana dos santos2, felipe santos da silva3, rodrigo almeida bastos3, carmen silvia passos lima3, christine maheu4, egberto ribeiro turato3, simone godoy5 1fundamental nursing program at university of são paulo at ribeirão preto college of nursing. são paulo, brazil; 2faculty of santa casa da bahia, salvador, bahia. brazil; 3faculty of medical sciences of the state university of campinas – fcm/unicamp. campinas, são paulo, brazil; 4school of nursing, mcgill university. montreal, quebec, canada; 5department of general and specialized nursing at university of são paulo at ribeirão preto college of nursing. são paulo, brazil corresponding author: r.s.e. sant'ana (enf.rses@gmail.com) abstract objective: to identify the impacts of head and neck cancer treatment on the sexual health of patients. methods: an integrative literature review was carried out from may to october 2020 using pubmed, cinahl, web of science, lilacs, and the scielo portal. a total of 287 primary articles were identified. after assessing them, 6 articles met the eligibility criteria, which were: all articles published in the last ten years that addressed the sexual impact of hnc treatment on people's lives, without any language or age. results: patients with head and neck cancer have to face aesthetic disfigurement challenges in post-treatment. this leads to a greater degree of suffering and social and sexual problems than is observed in other cancer patients. health professionals do not feel safe to access the intimate and sexual demands of patients during the clinical treatment. conclusions: most of the studies included in this review focused on measuring the quality of life using only one or two variables related to sexuality. there is the need other research to explore how multiple factors, such as social, psychological, cultural, religious, ethnic, and ethical factors, affect sexuality. this promotes the creation of the paths for comprehensive care and management of patients. keywords head and neck cancer; nursing; oncology; quality of life; sexuality introduction it is estimated that 780,000 new cases of head and neck cancer (hnc) occur annually globally (ferlay et al., 2019). in brazil, 11,180 and 4,010 cases are estimated to occur in men and women, respectively, for the triennium of 2020-2022 (inca, 2019). among the types of hnc, 40%, 15%, 20%, and 20% occur in the oral cavity, pharynx, larynx, and the remaining sites, respectively (inca, 2019). hnc can be caused by several factors. the most common include chronic exposure to tobacco and alcohol carcinogens, infection with the epstein barr and human papillomavirus (hpv), and genetic factors. there are three therapeutic modalities for patients with hnc: surgery, radiotherapy, and chemotherapy (de vita et al. 2015). the beneficial effects of cancer treatment are unequivocal, but the acute and chronic side effects, as well as the emotional and social effects that the treatment and disease impose are severe. this is because patients undergoing hnc treatment have an aggravating factor for their health condition. this aggravating factor is related to greater physical exposure to this condition and evident limitation of body areas related to human relationships (rhoten, 2016). thus, aesthetic, and functional issues are 369 ihtp, 1(3), 368-378, 2021 cc by-nc-nd 4.0 issn 2563-9269 directly affected, leading to both physical suffering, inherent in the treatment of cancer, as well as emotional and social suffering. thus, patients undergoing hnc treatment are in a context in which they need to deal with both the physical effects of clinical treatment and the emotional or social challenges that involve a limiting disease of human relationships and self-esteem (rhoten et al., 2020). therefore, the significant disfigurement of the face and neck, as well as the impairment of the senses and facial expressions, caused by both the disease and the treatment, critically affect the experiences of these patients' sexuality (katz, 2018). according to the world health organization (who), sexuality and intimacy are essential to wellbeing and quality of life (who, 2017). the diagnosis of cancer, as well as its therapeutic approaches, affects the physical, psychic, and social dimensions of cancer patients and results in significant impairments of sexual function and relationships (gurevich et al., 2004) (juraskova et al., 2003). recent evidence shows an incidence of 24% to 100% of patients with ccp reporting negative effects of treatment and disease on sexuality (rhoten, 2016). individuals undergoing treatment also report a perception of reduced quality of life and general health status when they perceive impairments in sexual experiences, such as sexual dysfunction or problems with intimacy (low, et al., 2009) (muzzatti et al., 2012) (tierney, 2008). in this context, the patients' emotions directly reflect on their clinical condition, raising the importance of understanding these feelings for a better case management. thus, evidence indicates the reduction of sexual satisfaction as one of the main symptoms after treatment of ccp and, also, the support related to sexuality as one of the main unmet care needs of these patients (batıoğlu-karaaltın et al., 2018). from this perspective, a group of experts from the american society for clinical oncology (asco) published guidelines based on the cancer care ontario (cco) ones, which provide recommendations for the management of sexual dysfunction stemming from the diagnosis and/or treatment of cancer. the document shows that the multidisciplinary team should discuss and plan for the continuation of treatment (carter, et al., 2018). psychosocial assessments should be performed when a concern is identified. referrals should be made since sexual problems often have psychosocial and physiological causes. however, the experts emphasize the difficulty of collect studies to justify the relation between hnc treatment and patients' sexuality (carter, et al., 2018) (rhoten et al., 2020). despite the importance of the findings in the literature, a review of empirical studies between 2005-2014 confirmed the paucity of data on the experiences of sexuality in patients with head and neck cancer, with only 9 empirical studies published (rhoten, 2016) (mendes et al., 2008). in this context and given the diverse impacts ccp has on patients' experiences of sexuality, we note the importance of gathering scientific evidence to support the creation of health care guidelines, improve case management and allow for a continuity of care for these patients. for this reason, this study aimed to identify scientific evidence the impact of head and neck cancer treatment on sexuality of patients through an integrative review. methods design an integrative review was carried out for knowledge synthesis in the following stages: preparation of the research question; search for primary studies; data extraction; evaluation of primary studies; and analysis and interpretation of the results (mendes et al., 2014). the study was based on the following question: " what is the scientific evidence available in the literature about the impact of head and neck cancer treatment on sexuality of patients?”". for its elaboration, the pico strategy was used (da costa santos et al., 2007); "p" (population) referred to patients who had treatment for head and neck cancer; "i" (intervention) referred to cancer treatments for hnc; "c" (comparison) = does not apply; and o (outcome or outcomes) referred to sexual experiences and quality of life before and during treatment for hnc and the sexual impact on patients undergoing treatment. procedure for identifying relevant articles 370 ihtp, 1(3), 368-378, 2021 cc by-nc-nd 4.0 issn 2563-9269 articles that addressed the sexual impact of hnc treatment on the lives of people were included in this study without any language or age restrictions. we excluded all studies published more than ten years ago; duplicates after the screening of abstracts; studies that did not address the theme of sexuality; studies comprising literature reviews (since they do not use a specific research question, they favor criticism being included in this type of review) and gray literature, such as theses, dissertations, and congress annals; and manuscripts that did not answer the guiding question. the time frame was justified by the specificity of the theme, which had been more studied within the last decade. the search was conducted from may to october 2020. the search was carried out in may by two authors of this review in five databases: national library of medicine national institutes of health (pubmed), cumulative index to nursing and allied health literature (cinahl), web of science (wos), latin american and caribbean literature on health sciences (lilacs), and the scientific electronic library online (scielo) portal. in line with the search strategy used, descriptors of the medical subject headings section (mesh) and descriptors in health sciences (decs) were used. procedure used to review the articles identified as relevant after the search, the results were exported to a bibliographic manager, endnote basic, and duplicates were excluded. all titles and abstracts were independently screened by two reviewers. the selection of the articles followed the recommendations of the preferred reporting items for systematic reviews and meta-analyses (prisma) (moher et al., 2009) (figure 1). during the final phase, the checklists for strengthening the reporting of observational studies in epidemiology (strobe) (von elm, et al., 2007) and consolidated criteria for reporting qualitative research (coreq) (tong et al., 2007) were used to evaluate the methodological quality of the included studies. subsequently, the findings were categorized under three topics of analysis according to the themes of greatest recurrence present in the articles. the studies were analyzed through the following stages: exploratory reading and recognition of information relevant to the subject of this study; selective reading to choose the specific material; analytical and interpretive reading (mendes et al., 2008) (soares, et al., 2014). three topics of discussion were derived from the readings and interpretation of the selected information. results six articles published between 2008 and 2020 were included for analysis; they included 5 population studies (surveys carried out with human beings) and one theoretical study (searches carried out in scientific databases) (table 1). most studies analyzed the questions related to the sexuality of the patients after the clinical interventions and investigated aspects of quality of life, intimacy, and sexual relations. discussion topic i impact and family support for hnc patients during treatment the evidence was categorized based on the physical, social, and psychological effects during and after treatment for hnc, which imposes adaptation challenges, as well as the relevance of family support to the patient. the findings show the growing need for specialized care for the population studied, especially for sexuality issues; how to approach and manage these issues and reduce or mitigate possible sexual problems that can interfere with sexuality during this period are crucial. hnc is more frequently present in middle-aged and old men, and little is known about the prevalence and risk factors of sexual dysfunction. older patients are more likely to report sexual problems than younger patients. most of the patients included in the study had family support and excellent relationships with their spouses, children, friends, and other relatives. these findings strongly favor family dynamics. it was reported that the patients had sexual activity although it was decreased, and the main reason for this was the loss of libido. patients with hnc must face post-treatment challenges, not only related to physical disability, such as eating and speech problems, but also aesthetic disfigurement. this 371 ihtp, 1(3), 368-378, 2021 cc by-nc-nd 4.0 issn 2563-9269 forces them to readjust their lifestyles, which leads to a greater degree of suffering and social and sexual problems than is observed in other cancer patients (hirani et al., 2015) (bond et al., 2019). the authors raise relevant questions related to aspects of human subjectivity, the representation of the body throughout treatment, and how the patient faces the changes imposed by the treatment. changes in the body can interfere with social relations and result in psychological and nutritional issues, which emphasizes the need for a multidisciplinary approach to caring for these patients. the intimacy problems that patients may experience after hnc are recurrent but hidden. the authors reinforce that the findings of the study are weak since they were limited to the retrospective review of case series to identify whether intimacy was discussed and recorded in the clinic. the issues of intimacy and sex are rarely discussed in the clinic (rogers et al., 2015). moreno et al. (2012) found that all the 42 patients assessed reported that hnc negatively impacted their sexual relationships, and 50% of them classified the effects as extremely negative. they found that men younger than 60 years had better sexual satisfaction after treatment than older men. patients with partners also reported higher sexual satisfaction than those without partners. patients submitted to at least one surgical option reported sexual satisfaction like those treated with clinical procedures. the age factor, especially in relation to male physiology, is crucial and often necessitates pharmacological or surgical management for correcting impotence, which is one of the most frequent forms of sexual dysfunction in men due to advanced age and may be aggravated by the diagnosis of cancer. the amount of tobacco/alcohol consumed, the site of the tumor, and the type of treatment (surgery or radiotherapy) had no impact on the sexual difficulties of the patients with laryngeal or hypopharynx cancer. changes in appearance were also not problematic for patients. however, high degrees of suffering, advanced stages of the tumor, and tracheostomy were indicators of sexual problems. forty-two percent of the patients included in the study, which is equivalent to less than half of the total number of patients, had a sexual desire and were sexually satisfied or very satisfied at 14 months (mean) after the diagnosis and treatment of hnc (singer et al., 2008). although the authors highlighted sexual problems in patients with hnc during and after treatment in different ways, they did not specify the appropriate strategies for the management of oncosexual problems by the multidisciplinary team that assists these patients. topic ii: the main instruments for measuring the quality of life or sexuality of patients with hnc for this topic, the main instruments used by the authors to assess the quality of life or sexuality were synthesized, which allowed the evaluation of the sexual function of the person with hnc at a given time. aro et al. (2016) provided an overview of the health-related quality of life (hrqol) of patients with hnc during the first year after treatment. the hrqol scores remained reasonably consistent despite intensive treatment. in addition, psychological well-being improved after treatment, indicating that initial distress related to the diagnosis of malignant disease can be mitigated during treatment. this highlights the importance of patient support throughout the process, including diagnosis, treatment, rehabilitation, and follow-up. the 15d instrument seems useful for evaluating the hrqol of patients with hnc treated surgically or with radiotherapy, chemotherapy, or a combination of modalities (the domains evaluated by the instrument were mobility, vision, hearing, breathing, sleep, appetite, speech, excretion, normal activities, mental function, discomfort, depression, distress, vitality, and sexual activity). the authors observed a marked deterioration in "vitality" and "sexual activity" three months after the beginning of treatment, with gradual improvement for twelve months, although the baseline levels were not reached. hirani et al. (2015) evaluated the impact of hnc treatment on the quality of life of patients and observed that 50% of patients reported that their sex life was worse or much worse than it was before cancer. moreno et al. (2012) performed a cross-sectional evaluation of the sexual quality of life of 42 patients 372 ihtp, 1(3), 368-378, 2021 cc by-nc-nd 4.0 issn 2563-9269 diagnosed with hnc and during treatment through the modified sexual adjustment questionnaire (saq), which was specific to evaluating some aspects of sexuality. in the modified version of the saq, there were eight specific questions: three on dimensions (sexuality, sexual function, relationship/activity) and five on focus areas (importance, desire, enjoyment, relationship, activity). the authors omitted a question from the original saq (focus of tension/frustration: "do you feel tensed or frustrated after a sexual experience?"), believing that it was too vague to provide insights into a sexual problem or direct an intervention to solve it. the authors added two new questions that assessed enjoyment ("are you satisfied with the frequency of sexual activity in your life?") and relationship ("were you the only one to initiate (start) sexual activity with your partner(s) since your last cancer treatment?"). they selected these questions to identify the affected areas that may benefit from the intervention. they reported that they were the first to cross-examine the quality of sexual life in patients with hnc after diagnosis and treatment using an instrument that focuses specifically on sexual behavior, in contrast to other well-known and previously mentioned instruments. of all the instruments identified in the studies synthesized in this review, the saq was the only specific scale that assessed sexuality. there is a need for the construction and validation of scales or instruments that can evaluate sexuality in various dimensions and not exclusively sexual function. singer et al. (2008) used the quality-of-life questionnaire, head and neck module (eortc qlq-h & n 35). this is a validated and standardized questionnaire for assessing patients with hnc. the "sexual difficulties" subscale (eortc qlq-hnsx) contains two questions: "during the last week have you felt less interest in sex?" and "during the last week have you felt less sexual enjoyment?" additional issues related to changes in sexual life due to tracheostomy were highlighted. if the patient indicated any influence, supplementary questions about the cause(s) were asked. fifty-three percent of the patients intimated that their sex life was worse than it was before they were diagnosed with the tumor. forty-two percent of men reported erectile dysfunction, and twelve percent reported that it was not hnc-related. seventy-three percent of the study participants had undergone tracheostomy and lived with their partner; sixty-six percent reported feeling no influence of the stoma on their sexual relationship, three percent said they had positive effects, and thirty-one percent had negative effects. they attributed the negative effects to the reduction of physical strength (n = 19), sputum (n = 8), and respiratory sounds (n = 4). sixty percent of the patients considered sexuality to be important or very important. most of the instruments identified during the literature search were generic, with only a few domains that promptly assessed sexual dysfunction. the development, dissemination, and validation of psychometrically sound instruments that can evaluate sexuality in different dimensions are necessary, covering the conceptual amplitude according to the who. topic iii: contributions of health professionals to reducing the sexual impact of hnc treatment on patients patients with hnc submitted to any treatment option have a sexual impact. health professionals need to value and accept complaints related to the sexuality of the patients under their care. this topic is related to evidence on the theme and its interfaces for clinical practice. aro et al. (2016) and hoole et al. (2015) have cited strategies to identify and treat psychosexual problems in clinical practice to support these patients, such as the inclusion of brief narratives about the current sexual life of the patient, inclusion of lifestyle education, as well as the effects of smoking and alcohol on sexual vasodilation and how the medications in use can cause sexual side effects. the permission, limited information, specific suggestions, intensive therapy (plissit) model is a framework that can help professionals use direct and open questions to lead patients into discussing their problems with intimacy and sex. rogers et al. (2015). found that it is difficult for health professionals to address the issue of intimacy after hnc treatment. questionnaires can be included as an instrument to facilitate discussion. however, teams should be trained to increase their confidence and willingness to discuss this issue when asked about their work routines. intimacy needs to be addressed directly by the clinician to encourage patients to 373 ihtp, 1(3), 368-378, 2021 cc by-nc-nd 4.0 issn 2563-9269 discuss their difficulties. reflecting on the objective of the work of health professions in oncology, the oncology nurse is the best professional to work on issues of sexuality in various dimensions, especially considering the holistic training of nurses, which facilitates the revelation of the subjective issues that the theme in question requires. in addition, it is a profession that anchors the work process in theories emphasizing scientific knowledge, which demonstrates the trends of views on the healthdisease process in a biopsychosocial way. however, nurses need to appropriate the theme through better scientific evidence, training courses, and seminars, among others. singer et al. (2008) reported that the discussion of sexual and psychological problems is rarely part of the activities of health professionals, and they may feel insecure about how to deal with the subject during their consultations. it is necessary to encourage open discussions about the sexuality of patients in the clinic to encourage them to reveal their concerns and allow professionals to indicate appropriate treatment. a prospective study investigated sexual interest and the pleasure of patients with head and neck cancer (hnc) treated with neoadjuvant radiotherapy and analyzed the sociodemographic and clinical factors, health-related quality of life (hrqol), and symptoms of psychological distress. before initiating treatment, 37% of patients reported having reduced sexuality, which increased to 60% at the 6-week follow-up and returned to baseline after 12 or more months of follow-up. old age (p= 0.037) and problems with social contact (p <0.001), weight loss (p= 0.013), and constipation (p= 0.041) before treatment were associated with reduced sexuality over time. the female gender (p = 0.021) and poor social functioning (p<0.001) at 6 months of follow-up were associated with reduced sexuality at the follow-up of 6–24 months. the studies by singer et al. (2008) and moreno, et al. (2012) found that reduced sexual activity is often reported in patients with hnc treated with radiotherapy and chemotherapy. these patients have low sexual activity before the start of treatment through 24 months of follow-up, and this has been attributed to advanced age, weight loss before treatment, constipation, and problems with social contact (hoole et al., 2015). the treatment of hnc significantly impacts the sexuality of patients. however, the management of sexuality is challenging for clinical practice, since it involves intimate issues, and professionals do not feel safe to access the demands of the intimate and sexual sphere. this insecurity may be related to the lack of instrumentalization or systematization to guide the approaches to sexuality or inadequate training of health professionals or disciplines on sexuality. conclusion there are gaps in the studies that address sexuality in relation to head and neck cancer. most of the studies included in this review focused on measuring the quality of life using only one or two variables related to sexuality, thus limiting the discussion of the theme. this contributes to the latent and present difficulties related to the sexual lives of people who have experienced head and neck cancer, and this makes it impossible for knowledge on this subject to be disseminated from a scientific point of view, with the aim of improving the management of the issues related to this theme. therefore, there is the need to explore other research, since multiple factors, such as social, psychological, cultural, religious, ethnic, and ethical factors, affect sexuality. qualitative research, by exploring subjectivity, can be a good way of evaluating how the disease process and its consequences impact the experience of sexuality through the perspective of patients. we need to advance the acquisition of new knowledge on human sexuality because it is a theme rarely addressed in undergraduate and specialization courses for health. we suggest that the interfacing of nursing with other professionals of the multidisciplinary team in oncology is one of the paths for comprehensive care and management of patients. acknowledgements the authors wish to acknowledge and thank teaching and research institute (iep) of the hospital síriolibanês for the approval of the institutional incentive for research id = 288, bearing all the costs of this publication. 374 ihtp, 1(3), 368-378, 2021 cc by-nc-nd 4.0 issn 2563-9269 references aro, k., bäck, l., loimu, v., saarilahti, k., rogers, s., sintonen, h., roine, r., & mäkitie, a. (2016). trends in the 15d health-related quality of life over the first year following diagnosis of head and neck cancer. head and neck surgery, 273(8), 2141–2150. batıoğlu-karaaltın, a., binbay, z., yiğit, ö., & dönmez, z. (2017). evaluation of life quality, selfconfidence and sexual functions in patients with total and partial laryngectomy. auris, nasus, larynx, 44(2), 188–194. bond, c. b., jensen, p. t., groenvold, m., & johnsen, a. t. (2019). prevalence and possible predictors of sexual dysfunction and selfreported needs related to the sexual life of advanced cancer patients. acta oncologica, 58(5), 769–775. carter, j., lacchetti, c., andersen, b. l., barton, d. l., bolte, s., damast, s., diefenbach, m. a., duhamel, k., florendo, j., ganz, p. a., goldfarb, s., hallmeyer, s., kushner, d. m., & rowland, j. h. (2018). interventions to address sexual problems in people with cancer. journal of clinical oncology 36(5), 492–511. da costa santos, c. m., de mattos pimenta, c. a., & nobre, m. r. (2007). the pico strategy for the research question construction and evidence search. revista latino-americana de enfermagem, 15(3), 508–511. de vita, v. t; lawrence, t. s; rosenberg, a. s. (2015). cancer: principles & practice of oncology. 10ed. wolters kluwer, philadelphia, p. 422481. ferlay, j., colombet, m., soerjomataram, i., mathers, c., parkin, d. m., piñeros, m., znaor, a., & bray, f. (2019). estimating the global cancer incidence and mortality in 2018: globocan sources and methods. international journal of cancer, 144(8), 1941–1953. gurevich, m., bishop, s., bower, j., malka, m., & nyhof-young, j. (2004). (dis)embodying gender and sexuality in testicular cancer. social science & medicine, 58(9), 1597–1607. hirani, i., siddiqui, a. h., & muhammad khyani, i. a. (2015). apprehensions and problems after laryngectomy: patients' perspective. jpma. the journal of the pakistan medical association, 65(11), 1214–1218. hoole, j., kanatas, a. n., & mitchell, d. a. (2015). psychosexual therapy and education in patients treated for cancer of the head and neck. british journal of oral & maxillofacial surgery, 53(7), 601–606. inca. (2019). estimativa 2020: incidência de câncer no brasil / instituto nacional de câncer josé alencar gomes da silva. coordenação de prevenção e vigilância. – rio de janeiro: [internet]. [cited 2020 jun 20]. available from: https://www.inca.gov.br/sites/ufu.sti.inca.l ocal/files//media/document//estimativa2020-incidencia-de-cancer-no-brasil.pdf. juraskova, i., butow, p., robertson, r., sharpe, l., mcleod, c., & hacker, n. (2003). posttreatment sexual adjustment following cervical and endometrial cancer: a qualitative insight. psycho-oncology, 12(3), 267–279. katz a. (2018). breaking the silence on cancer and sexuality: a handbook for healthcare providers. oncology nursing society publishing, pittsburgh (pa), 303. low, c., fullarton, m., parkinson, e., o'brien, k., jackson, s. r., lowe, d., & rogers, s. n. (2009). issues of intimacy and sexual dysfunction following major head and neck cancer treatment. oral oncology, 45(10), 898–903. melissant, h. c., jansen, f., schutte, l., lissenbergwitte, b. i., buter, j., leemans, c. r., sprangers, m. a., vergeer, m. r., laan, e., & verdonck-de leeuw, i. m. (2018). the course of sexual interest and enjoyment in head and 375 ihtp, 1(3), 368-378, 2021 cc by-nc-nd 4.0 issn 2563-9269 neck cancer patients treated with primary (chemo)radiotherapy. oral oncology, 83, 120–126. mendes kds, silveira rccp, galvão cm. (2008). integrative literature review: a research method to incorporate evidence in health care and nursing. texto contexto enferm.17(4), 758-64. moher, d., liberati, a., tetzlaff, j., altman, d. g., & prisma group (2009). preferred reporting items for systematic reviews and metaanalyses: the prisma statement. bmj, 339, b2535. moreno, k. f., khabbaz, e., gaitonde, k., meinzenderr, j., wilson, k. m., & patil, y. j. (2012). sexuality after treatment of head and neck cancer: findings based on modification of sexual adjustment questionnaire. the laryngoscope, 122(7), 1526–1531. muzzatti, b., giovannini, l., flaiban, c., & annunziata, m. a. (2012). la sessualità e l'intimità di coppia dopo il cancro: un'indagine esplorativa a cinque anni o più dallo fine dei trattamenti [sexuality and intimacy after cancer: an explorative survey at 5 years or more since treatment completion]. giornale italiano di medicina del lavoro ed ergonomia, 34(2 suppl b), b12–b16. rhoten b. a. (2016). head and neck cancer and sexuality: a review of the literature. cancer nursing, 39(4), 313–320. rhoten, b. a., davis, a. j., baraff, b. n., holler, k. h., & dietrich, m. s. (2020). priorities and preferences of patients with head and neck cancer for discussing and receiving information about sexuality and perception of self-report measures. journal of sexual medicine, 17(8), 1529–1537. rogers, s. n., hazeldine, p., o'brien, k., lowe, d., & roe, b. (2015). how often do head and neck cancer patients raise concerns related to intimacy and sexuality in routine follow-up clinics?. head and neck surgery, 272(1), 207–217. singer, s., danker, h., dietz, a., kienast, u., pabst, f., meister, e. f., oeken, j., thiele, a., & schwarz, r. (2008). sexual problems after total or partial laryngectomy. laryngoscope, 118(12), 2218–2224. soares, c. b., hoga, l. a., peduzzi, m., sangaleti, c., yonekura, t., & silva, d. r. (2014). revisão integrativa: conceitos e métodos utilizados na enfermagem [integrative review: concepts and methods used in nursing]. revista da escola de enfermagem da u s p, 48(2), 335–345. tierney d. k. (2008). sexuality: a quality-of-life issue for cancer survivors. seminars in oncology nursing, 24(2), 71–79. tong, a., sainsbury, p., & craig, j. (2007). consolidated criteria for reporting qualitative research (coreq): a 32-item checklist for interviews and focus groups. international journal for quality in health care : journal of the international society for quality in health care, 19(6), 349–357. von elm, e., altman, d. g., egger, m., pocock, s. j., gøtzsche, p. c., vandenbroucke, j. p., & strobe initiative (2007). strengthening the reporting of observational studies in epidemiology (strobe) statement: guidelines for reporting observational studies. bmj , 335(7624), 806–808. world health organization. sexual health (who). [internet]. (2017). geneva (ch); [cited 2020 jul 12]. available from: http://www.who.int/topics/sexual_health/e n. 376 ihtp, 1(3), 368-378, 2021 cc by-nc-nd 4.0 issn 2563-9269 figure 1. prisma 2020 flow diagram records identified from*: pubmed (n = 106) web of science (n= 129) cinahl (n= 27) lilacs (n= 5) scielo (n= 20) registers (n = 287) records removed before screening: duplicate records removed (n = 81) records marked as ineligible by automation tools (n = 0) records removed for other reasons (n = 0) records screened (n = 206) records excluded** (n = 81) reports sought for retrieval (n = 0) reports not retrieved (n = 195) reports assessed for eligibility (n = 11) reports excluded: summary screening (n = 195) literature review article (n = 3) did not address the topic of sexuality (n = 2) studies included in review (n = 11) reports of included studies (n = 6) id en tif ic at io n s cr ee ni ng in cl ud ed identification of studies via databases and registers 377 ihtp, 1(3), 368-378, 2021 cc by-nc-nd 4.0 issn 2563-9269 table 1. data extraction no. author/year / country objectives method participants results quality assessment 1 aro et al. 2016 germany to demonstrate the transitions in hrqol for a larger head and neck cancer population using the 15d instrument over the first year after diagnosis. prospective cohort n = 214 patients undergoing treatment for head and neck cancer. helsinki university hospital. the overall quality of life score remained reasonably constant despite the intensive treatment. some domains that reflect psychological well-being tend to improve after treatment, indicating that initial distress related to the diagnosis of malignant disease can be mitigated during treatment. 72% 2 rogers et al. 2015 united kingdom to collate the various prompts available in a routine follow-up clinic through the use of an intimacy screening question and patient's concerns inventory (pci), and to identify how often these problems were raised by patients and what actions took place as a consequence. prospective n = 177 patients with head and neck cancer; follow-up clinic. intimacy issues are underreported in clinical reviews. this is a difficult subject to discuss. suggested construction of information leaflets, staff training on how to talk about such sensitive issues and referral for advice. 72% 3 hirani et al. 2015 pakistan to evaluate the apprehension and social, sexual, and financial problems in patients with advanced laryngeal cancer after total laryngectomy and the impact of attending a laryngeal club for these problems. analytical study n = 125 patients with laryngectomy; medical centers of sindh and balochistan. of the patients, 7 (5%) feared losing their sexual relationship with their spouse; 98 (78%) had a satisfactory sex life, although with a frequency of 1 to 2 intercourses per month; 21 (17%) had a frequency of 3-10 per month; and 3 (2%) had a frequency of more than 10 per month. sixteen (13%) patients were not involved in sexual relationships with their spouses due to various reasons. 78% 378 ihtp, 1(3), 368-378, 2021 cc by-nc-nd 4.0 issn 2563-9269 4 hoole et al. 2015 united kingdom to introduce the reader to existing methods used in the diagnosis and treatment of psychosexual problems; to describe the first experiences of use. theoretical study does not apply. presents established strategies for the diagnosis and treatment of psychosexual problems to support these patients and describes the first experiences of using these strategies through brief narratives and case reports to show how they made a difference to patients and their partners. does not apply. 5 moreno et al. 2012 usa to evaluate sexual dysfunction in patients after treatment for head and neck cancer. crosssectional study n = 42 patients with head and neck cancer; barrett cancer center. all 42 patients reported that head and neck cancer negatively impacted their sexual relationships. higher satisfaction was found in males. 76% 6 singer et al. 2008 usa to investigate post-surgical sexual problems associated with laryngeal and hypopharynx cancer. crosssectional study n = 206 patients german community hospital. more than half of the patients in the study reported having reduced libido and sexual enjoyment after treatment. sixty percent considered this an important issue for their contentment with life. sexual difficulties were not related to gender, formal education, alcohol and tobacco consumption, type of surgery, radiotherapy, and tumor site. psychological distress had a strong impact on sexual life. the stage of disease and age showed a moderate independent impact. 81% 390 ihtp, 1(3), 390-403, 2021 cc by-nc-nd 4.0 issn 2563-9269 electronic health literacy among adults with chronic pain: a descriptive, cross-sectional survey original research hyejin park1, geraldine martorella1, glenna schluck,1 1college of nursing, florida state university, tallahassee, fl, usa corresponding author: h. park (hpark5@fsu.edu) abstract background: approximately 100 million american adults are living with chronic pain, which costs the healthcare system an average of $560–635 billion each year. levels of health literacy and ehealth literacy are important factors in determining a patient’s capacity to manage pain and the multidimensional impact of pain. to our knowledge, few studies have specifically examined the level of ehealth literacy and its association with health literacy among chronic pain patients. the purpose of this study was to 1) assess the levels of health literacy and ehealth literacy in adults with chronic pain, and 2) examine the relationship between health literacy and ehealth literacy skills among adults diagnosed and living with chronic pain. methods: a non-experimental, descriptive cross-sectional survey was distributed to adults with chronic pain. a total of 196 participants were asked to complete questionnaires related to demographic characteristics, ehealth literacy (eheals), and health literacy (hlq). descriptive statistics were calculated to summarize data from all the scales used in the study. results: the average level of ehealth literacy was 32.6 (sd 4.4) out of 40. the level of health literacy was measured by four subscales: having sufficient information to manage my health (mean=2.8; sd=0.55), appraisal of health information (mean=3.27; sd=0.41), ability to find good health information (mean=3.68; sd=0.45) and understanding health information well enough to know what to do (mean=3.66; sd=0.48). two subscales (i.e., appraisal of health information, ability to find good health information) were significant in predicting ehealth literacy total score. discussion and conclusions: examining ehealth literacy and health literacy can assist in the dissemination of accessible and understandable chronic-pain-related health information for individuals of all health literacy levels. in addition, this will allow the development of interventions for enhancing ehealth literacy skills and/or usability of web-based information for adults with chronic pain. keywords chronic pain, ehealth literacy, health literacy, online health information introduction chronic pain is one of the most common chronic conditions. according to data from the 2019 national health interview survey (nhis), the prevalence of chronic pain was 20.4%, (zelaya et al., 2020), with an estimated national economic cost of $560–635 billion annually (gaskin & richard, 2012). people with chronic pain are required to manage their condition daily and are often on a waiting list for referral to a pain specialist or consultation at a pain clinic. although caseloads and wait times are difficult to estimate, it is generally recognized that treatment availability for chronic pain is particularly scarce across the united states (fashler et al., 2016; schatman, 2012). as a result, individuals often get discouraged and search for temporary solutions online to assist in the management of their pain. as a result, health literacy, which is “the degree to which individuals have the ability to find, understand, and use information and services to inform health-related decisions and actions for themselves and others” (santana et al., 2021, s259) has become an important factor in determining their capacity to manage their several studies have examined the impact of health literacy levels on health outcomes (berkman et al., 2011; sheridan et ai., 2011; jacobs et al., 2016; kim, & xie, 2017), with results suggesting low health literacy may have an impact on the management of chronic pain. specifically, devraj, herndon and griffin (2013) reported individuals who had lower levels of health literacy levels were not able to 391 ihtp, 1(3), 390-403, 2021 cc by-nc-nd 4.0 issn 2563-9269 effectively engage in self-care, as they did not fully understand when and how to take their pain medication, the various types of nonpharmacological strategies to use to manage pain, and how to access care from health professionals during periods of pain flare-ups (devraj, herndon, & griffin, 2013). additionally, approximately 90 % of americans use the internet on a regular basis (pew research center, 2017) with on average, one in three adults searching for health information online (fox & duggan, 2013). the notion of accessing health information online is known as electronic health (ehealth) information. as the rate of ehealth information continues to increase, it has become more important than ever to determine ehealth literacy of individuals who not only access this information but use it to influence their overall health status. electronic health literacy is the ability to seek, find, understand, appraise, and implement online health information to address or solve a health problem (norman & skinner, 2006a; norman & skinner, 2006b). this type of health literacy has become an important aspect of self-management intervention design (kim & xie, 2017; watkins, & xie, 2014; chesser et al., 2016). table 1 compares the definitions of health literacy and ehealth literacy. currently, it is unclear as to whether low ehealth literacy is related to low health literacy, low digital literacy or a combination of these factors (del giudice et al., 2018). although, it is generally admitted that both variables are related based on norman and skinner’s theoretical model, studies have reported contradictory results depending on the population sample. for example, among students, these variables did not demonstrate a statistically significant association (monkman et al., 2017). however, among individuals living with chronic conditions, these variables were found to predict different clinical outcomes (neter & brainin, 2019; stellefson et al., 2019). few studies exist that have either demonstrated an association between health literacy and ehealth literacy or considered the impact of health literacy on ehealth literacy. one study suggested individuals with low health literacy skills experienced increased difficulties evaluating online health information (diviani et al., 2015). additionally qualitative reports indicate individuals with high health literacy were more likely to engage in online searches for health information (ellis et al., 2012). given the limited research in this area, there appears to be a need to examine the link more closely between health and ehealth literacy. by examining this connection, health departments and organizations will be better informed about the best method for disseminating chronic-pain-related health information that can be accessed and understood by individuals of all health literacy levels. in addition, this will allow the development of interventions for enhancing ehealth literacy skills and/or improving the usability of web-based information for adults with chronic pain. purpose to our knowledge, no study has looked at the relationship between health literacy and ehealth literacy levels in adults with chronic pain. the purpose of this study was to 1) assess the levels of health literacy and ehealth literacy in adults with chronic pain, and 2) examine the relationship between health literacy and ehealth literacy skills among adults diagnosed and living with chronic pain. methods design a non-experimental, descriptive cross-sectional survey was distributed to adults diagnosed and living with chronic pain. sample size the sample size was determined using green’s rule of thumb (green, 1991) which states the minimum number of subjects is 50+8m where m is the number of predictors. with 9 predictors, the minimum required sample size was calculated to be 122. procedure a convenience sample of 196 participants was recruited using amazon’s mechanical turk (mturk). amazon’s mturk is a popular internet crowdsourcing tool that makes it possible to recruit large and diverse samples of research participants from across the united states and around the world (paolacci, chandler, & ipeirotis, 2010) quickly and at relatively low cost (horton, & chilton, 2010). mturk is also effective in reaching populations that are typically underrepresented through traditional recruitment techniques (chandler, & shapiro, 2016). participant responses through mturk are anonymous to requesters, which protects participant 392 ihtp, 1(3), 390-403, 2021 cc by-nc-nd 4.0 issn 2563-9269 anonymity and increases response rates (o’neil, & penrod, 2001). responses have also been shown to be as reliable and valid as those of participants recruited through traditional sampling methods within a variety of research domains (goodman, cryder, & cheema, 2013). mturk workers browse human intelligence tasks (hits) by title, keyword, reward, availability, and so on, and complete hits of interest, for which they are paid upon completion (chandler, & shapiro, 2016). the format is well suited to the collection of survey data, and since requesters can discretionally reject work, worker reputation has a direct impact on future hits that workers can complete, leading to strong norms of honesty and accuracy (rand, 2012). sampling criteria participants in this study were restricted to u.s. residents with a history of at least a 90% task approval rate for their previous hits. participants who were willing to be involved in this study were asked to complete questionnaires related to 1) demographic characteristics (i.e., age, gender, ethnicity, marital and work status, education level, duration, and location of chronic pain), 2) internet use and ehealth literacy, and 3) health literacy. instruments to assess participants’ ehealth literacy level, an ehealth literacy scale titled: eheals was used (norman, & skinner, 2006b). the eheals is an 8item self-report questionnaire that focuses on knowledge and understanding of what health information is available on the internet, where one can find helpful health resources, how to access this information, how to use the internet, how to evaluate online health information, and how to discern the difference between highand low-quality health resources on the internet. each item is rated on a 5point likert scale ranging from 1 (strongly disagree) to 5 (strongly agree). total scores of the eheals are summed, ranging from 8 to 40, with higher scores representing higher self-perceived ehealth literacy. internal consistency reliability ranges from .89 to .97 and has good test-retest reliability (norman, & skinner, 2006b). two supplemental items recommended by the authors of eheals were included to assess the perceived usefulness of the internet for making health decisions (a 5-point likert scale ranging from 1=not useful at all to 5=very useful) and perceived importance of being able to access health resources on the internet (also a 5-point likert scale ranging from 1=not important at all, to 5=very important). to assess health literacy, the health literacy questionnaire (hlq) was used after obtaining a licence agreement from the authors (osborne et al., 2013). this instrument identifies health literacy strengths and weaknesses. the hlq includes 9 subscales, for a total of 44 items. each subscale provides a score. four out of nine subscales that are specifically related to the ability to search, appraise, understand, and use health information were included. the hlq has been shown to have strong psychometric properties (osborne et al., 2013). the four subscales include having sufficient information to manage health (subscale 2), appraisal of health information (subscale 5), ability to find good health information (subscale 8) and understanding health information well enough to know what to do (subscale 9). ethics after irb approval was obtained from florida state university, the survey offer was listed on mturk. after they accessed the offer, respondents were redirected to a link to the informed consent form. by starting the survey, the participants were agreeing to participate. respondents received $2.00 in compensation after completing the survey. analysis descriptive statistics were calculated to summarize data from all scales used in the study. normality was assessed through examination of histograms and by conducting kolmogorov-smirnoff tests. the relationship between ehealth literacy and health literacy was assessed by examining scatterplots, calculating spearman’s rank-order correlation between eheals and each hlq subscale, and conducting linear regression predicting eheals scores from the hlq subscales. residual plots were examined to determine if there were any violations to the assumptions of linear regression. missing data the two subscales for the health literacy questionnaire (subscales 8 and 9: finding and understanding health information) contained missing data. the missing values were imputed using an expectation maximization (em) algorithm according to scoring instructions and spss code supplied by the authors of the hlq tool (osborne, batterham, elsworth, hawkins, & buchbinder, 2013). results 393 ihtp, 1(3), 390-403, 2021 cc by-nc-nd 4.0 issn 2563-9269 demographics and clinical characteristics the sample included 196 participants with an average age of 40 years (sd 12.1 years). more than half (n=110, 56.1%; table 2) were female, white (n=162, 82.7%), achieved a 2-year degree or higher (n=124, 63.3%), or were employed full time (n=136, 69.4%). approximately half were married (n=97, 49.5%). most participants reported suffering from chronic pain for more than 2 years with 20.9% of them indicating that they have been suffering from chronic pain for more than 10 years. approximately half (n=94, 48%) suffered from chronic back pain. levels of health literacy and ehealth literacy the level of health literacy was measured by four subscales of the hlq (having sufficient information to manage my health [mean= 2.8 ; sd=0.55], appraisal of health information [mean= 3.27 ; sd=0.41], ability to find good health information [mean= 3.68 ; sd=0.45], understanding health information well enough to know what to do [mean= 3.66 ; sd=0.48] (table 4). table 5 describes the level of ehealth literacy in a sample of individuals suffering from chronic pain. when asked “how useful do you feel the internet is in helping you make decisions about your health?”, 82.1% indicated that the internet is useful (n=137, 69.9%) or very useful (n=24, 12.2%). when asked “how important is it for you to be able to access health resources on the internet?”, 88.7% indicated that it is important (n=91, 46.4%) or very important (n=83, 42.3%). the average ehealth literacy (eheals) was 32.6 (sd 4.4). out of 40. slightly fewer than half (n=93, 47.4%) of all participants had high ehealth literacy (defined as an eheals score above the mean). among the eight items in eheals, “i can tell high quality health resources from low quality health resources on the internet” rated the highest and “i feel confident in using information from the internet to make health decisions” rated lowest (table 5). cronbach’s alpha was calculated for each health literacy subscale and for the ehealth literacy scale to assess internal consistency of the measures. these values are displayed in table 3. all scales reported adequate internal consistency. the relationship between ehealth literacy and health literacy to examine the relationship between ehealth literacy and health literacy in adults with chronic pain, scatterplots between the eheals total score and each of the four hlq subscales were fit. scatterplots indicated weak to moderate positive bivariate relationships. the correlations between the eheals total score and each of the four hlq subscales were also weak to moderate (having sufficient information to manage my health: 0.36, appraisal of health information: 0.47, ability to find good health information: 0.27, reading and understanding health information: 0.18). preliminary examination of the bivariate scatterplots between the eheals total score and each of the four hlq subscales indicates that a quadratic relationship may be present. therefore, both the linear terms and the quadratic terms were included for each of the four subscales. backwards elimination was used to eliminate 3 of the four squared terms from the model. after this first step, the four linear terms and the squared term for hlq subscale 8 (i.e., finding health information) remained in the model. since the primary interest of this research question is to determine the relationship between the subscales themselves and the eheals total score, the linear terms were included regardless of significance level or standardized coefficient size. upon inspection of residual diagnostics, collinearity issues were present for hlq8 and its quadratic term. standardizing this subscale and recalculating the quadratic term solved the collinearity issue. additionally, two cases had large, standardized residuals (outside +/3 standard deviations). the analysis was repeated without these two cases to determine their impact on the analysis. while the pvalues and estimates were impacted for hlq9 (understanding health information), the conclusions about the relative importance for the variables does not change. to remain conservative, the results are presented for the full data set. while the hlq subscales are non-normal, examination of the histogram of residuals and the normal probability plot indicated no violations to the normality of residuals assumption. no additional violations to regression assumptions were noted. the linear regression anova results indicate that this model is useful for prediction (f[131, 5]=13.234, p<.0005) with the model explaining 31% of the variance in the eheals total score. in the final model, two subscales significantly predict eheals total score (hlq5: appraisal of health information, and hlq8: ability to find good health information). additional terms in the model are hlq2 (having sufficient information), hlq9 (understanding health 394 ihtp, 1(3), 390-403, 2021 cc by-nc-nd 4.0 issn 2563-9269 information), and the quadratic hlq8 (ability to find good health information) term. coefficients, p-values, and confidence intervals are presented in table 6. discussion health consumers’ health literacy plays an important role in seeking online health information because it includes the ability to evaluate health information online (schulz & nakamoto, 2013). this study is the first to explore the level of self-reported health literacy and ehealth literacy in adults with chronic pain, and the association between health literacy and ehealth literacy among these patients. based on these study results, most participants indicated that they found the internet useful and very important for searching for health information. the average ehealth literacy was high as illustrated by a mean score of 32.6 out of 40. of the 8 items in eheals, participants scored highest on the ability to tell high from low quality health resources on the internet, and lowest on feeling confident using online information to make health decisions. one study (stellefson et al., 2018) found that overall, participants with chronic obstructive pulmonary disease (copd) have moderate ehealth literacy, with more than 70% feeling confident in their ability to find online health information, but those participants felt much less confident in their ability to tell high from low quality online health information. these results differed slightly from our study findings. another study revealed that the average ehealth literacy was 26.3/40 among patients with rheumatic diseases, and that higher ehealth literacy was related to younger age, experience with app use, belief in using mobile apps, and current internet use for seeking online health information (knitza et al., 2020). chronic pain is one of the most common chronic conditions, and adults with chronic pain are a growing population of health care consumers. health literacy in patients with chronic pain will play a critical role in their development of better selfmanagement of pain and finding adequate coping strategies for chronic pain. patients with higher skills in the areas of searching, finding, understanding, and critiquing information have previously shown better performance with their chronic pain management and lower pain intensity (köppen et al., 2018). a crosssectional study (n=131), however, found that individuals with chronic pain have inadequate health literacy (mackey et al., 2019). in this study, we also found that the mean score for some areas of health literacy were inadequate or low. the lowest overall scores occurred for the scales “having sufficient health information to manage my health” and “appraisal of health information.” the highest score was seen for “understanding health information.” the results are similar to those of another study (beauchamp et al., 2015). as in our study, that study found that the lowest score was for “appraisal of health information.” our findings suggest that health literacy efforts that focus on “appraisal of health information” and “having sufficient health information to manage my health” for patients with chronic pain are an important strategy for utilizing quality of online health information to make health related decision. as technology-driven health consumers search for health information online, digital (ehealth) literacy has become an emerging concept. in terms of the relationship between levels of ehealth and health literacy, a weak to moderate correlation was identified. two categories of health literacy such as “appraisal of health information” and “ability to find good health information” significantly predicted ehealth literacy. this means that participants with lower scores on these two subscales had lower levels of perceived skills in finding or appraising digital (online) health information. these findings are similar to those of other studies. one study identified levels of health literacy among students, and less health literate students had significantly lower eheals scores than those with adequate health literacy (ghaddar et al., 2012). another study also found that participants with lower health literacy scored poorly on finding high quality online information and high on finding low quality online information (benotsch et al., 2004). while health literacy is one factor that influences ehealth literacy, other potential factors can also be associated with ehealth literacy. for example, education levels influence ehealth literacy positively (neter & brainin, 2012; van deursen & van dijk, 2011). this association has been previously demonstrated in chronic pain patients living in a low-income country (shiferaw et al., 2020) and it was also the case in our study, where the vast majority of participants had completed at least some college and reported a fairly high level of ehealth literacy. another study showed that reading ability is a factor that influences ehealth literacy (benotsch et al., 2004). limitations although these study findings provide some suggestions, they also are subject to two limitations. firstly, data were collected via a self-reported webbased survey (mturk). this may affect the study 395 ihtp, 1(3), 390-403, 2021 cc by-nc-nd 4.0 issn 2563-9269 findings due to the nature of self-selection and selfreporting. another limitation is the small sample size with a racially homogeneous sample. therefore, representativeness and generalization are potential limitations of this study. conclusion despite its limitations, this study has provided important insights about health literacy and ehealth literacy for patients with chronic pain. our findings showed that health literacy plays an important role in ehealth literacy, and this topic is worth scholarly attention. future studies in this area should focus on high quality interventions that improve the ability of individuals with low health literacy and low ehealth literacy to better self-manage their pain. in addition, health departments and organizations need better information about methods they can use to disseminate chronic-pain-related health information that people of all health literacy levels can access and understand. references beauchamp, a., buchbinder, r., dodson, s., batterham, r. w., elsworth, g. r., mcphee, c., ... & osborne, r. h. (2015). distribution of health literacy strengths and weaknesses across socio-demographic groups: a crosssectional survey using the health literacy questionnaire (hlq). bmc public health, 15(1), 1-13. benotsch, e. g., kalichman, s., & weinhardt, l. s. (2004). hiv-aids patients' evaluation of health information on the internet: the digital divide and vulnerability to fraudulent claims. journal of consulting and clinical psychology, 72(6), 1004. berkman, n. d., sheridan, s. l., donahue, k. e., halpern, d. j., & crotty, k. (2011). low health literacy and health outcomes: an updated systematic review. annals of internal medicine, 155(2), 97-107. berkman, n. d., sheridan, s. l., donahue, k. e., halpern, d. j., viera, a., crotty, k., ... & viswanathan, m. (2011). health literacy interventions and outcomes: an updated systematic review. evidence report/technology assessment, (199), 1-941. bailey, s. j., lachapelle, d. l., lefort, s. m., gordon, a., & hadjistavropoulos, t. (2013). evaluation of chronic pain-related information available to consumers on the internet. pain medicine, 14(6), 855-864. chesser, a., burke, a., reyes, j., & rohrberg, t. (2016). navigating the digital divide: a systematic review of ehealth literacy in underserved populations in the united states. informatics for health and social care, 41(1), 1-19. chandler, j., & shapiro, d. (2016). conducting clinical research using crowdsourced convenience samples. annual review of clinical psychology, 12, 53-81. corcoran, t. b., haigh, f., seabrook, a., & schug, s. a. (2009). the quality of internet-sourced information for patients with chronic pain is poor. the clinical journal of pain, 25(7), 617623.devraj, r., herndon, c. m., & griffin, j. (2013). pain awareness and medication knowledge: a health literacy evaluation. journal of pain & palliative care pharmacotherapy, 27(1), 19-27. diviani, n., van den putte, b., giani, s., & van weert, j. c. (2015). low health literacy and evaluation of online health information: a systematic review of the literature. journal of medical internet research, 17(5), e112. del giudice, p., bravo, g., poletto, m., de odorico, a., conte, a., brunelli, l., ... & brusaferro, s. (2018). correlation between ehealth literacy and health literacy using the ehealth literacy scale and real-life experiences in the health sector as a proxy measure of functional health literacy: cross-sectional web-based survey. journal of medical internet research, 20(10), e281. ellis, j., mullan, j., worsley, a., & pai, n. (2012). the role of health literacy and social networks in arthritis patients' health information-seeking behavior: a qualitative study. international journal of family medicine, 2012. fox s, duggan, m (2013) health online 2013: internet, science and tech report retrieved from https://www.pewresearch.org/internet/201 3/01/15/health-online-2013/ fashler, s. r., cooper, l. k., oosenbrug, e. d., burns, l. c., razavi, s., goldberg, l., & katz, j. (2016). systematic review of multidisciplinary chronic pain treatment facilities. pain research and management, 2016. gaskin, d. j., & richard, p. (2012). the economic costs of pain in the united states. the journal of pain, 13(8), 715-724. ghaddar, s. f., valerio, m. a., garcia, c. m., & hansen, l. (2012). adolescent health literacy: the importance of credible sources for online 396 ihtp, 1(3), 390-403, 2021 cc by-nc-nd 4.0 issn 2563-9269 health information. journal of school health, 82(1), 28-36. goodman, j. k., cryder, c. e., & cheema, a. (2013). data collection in a flat world: the strengths and weaknesses of mechanical turk samples. journal of behavioral decision making, 26(3), 213-224. green, s. b. (1991). how many subjects does it take to do a regression analysis? multivariate behavioral research, 26(3), 499-510. honey, m. l., bycroft, j., tracey, j., boyd, m. a., & mclachlan, a. (2010). quality processes that maximise the health navigator web portal as an enabler for consumers and health professionals. health care and informatics review online, 14(1), 12-18. horton, j. j., & chilton, l. b. (2010, june). the labor economics of paid crowdsourcing. in proceedings of the 11th acm conference on electronic commerce (pp. 209-218). jacobs, r. j., lou, j. q., ownby, r. l., & caballero, j. (2016). a systematic review of ehealth interventions to improve health literacy. health informatics journal, 22(2), 8198. kaicker, j., debono, v. b., dang, w., buckley, n., & thabane, l. (2010). assessment of the quality and variability of health information on chronic pain websites using the discern instrument. bmc medicine, 8(1), 1-8. knitza, j., simon, d., lambrecht, a., raab, c., tascilar, k., hagen, m., ... & hueber, a. j. (2020). mobile health usage, preferences, barriers, and ehealth literacy in rheumatology: patient survey study. jmir mhealth and uhealth, 8(8), e19661. kim, h., & xie, b. (2017). health literacy in the ehealth era: a systematic review of the literature. patient education and counseling, 100(6), 1073-1082. köppen, p. j., dorner, t. e., stein, k. v., simon, j., & crevenna, r. (2018). health literacy, pain intensity and pain perception in patients with chronic pain. wiener klinische wochenschrift, 130(1), 23-30. mackey, l. m., blake, c., casey, m. b., power, c. k., victory, r., hearty, c., & fullen, b. m. (2019). the impact of health literacy on health outcomes in individuals with chronic pain: a cross-sectional study. physiotherapy, 105(3), 346-353. monkman, h., kushniruk, a. w., barnett, j., borycki, e. m., greiner, l. e., & sheets, d. (2017). are health literacy and ehealth literacy the same or different? studies in health technology and informatics, 245:178182. pmid: 29295077. neter, e., & brainin, e. (2012). ehealth literacy: extending the digital divide to the realm of health information. journal of medical internet research, 14(1), e19. neter, e., & brainin, e. (2019). association between health literacy, ehealth literacy, and health outcomes among patients with long-term conditions. european psychologist. norman, c. d., & skinner, h. a. (2006a). ehealth literacy: essential skills for consumer health in a networked world. journal of medical internet research, 8(2), e506. norman, c. d., & skinner, h. a. (2006b). eheals: the ehealth literacy scale. journal of medical internet research, 8(4), e27. o’neil, k. m., & penrod, s. d. (2001). methodological variables in web-based research that may affect results: sample type, monetary incentives, and personal information. behavior research methods, instruments, & computers, 33(2), 226-233. osborne, r. h., batterham, r. w., elsworth, g. r., hawkins, m., & buchbinder, r. (2013). the grounded psychometric development and initial validation of the health literacy questionnaire (hlq). bmc public health, 13(1), 1-17. paolacci, g., chandler, j., & ipeirotis, p. g. (2010). running experiments on amazon mechanical turk. judgment and decision making, 5(5), 411419. pew research center (2017). record shares of americans now own smartphones, have home broadband. retrieved from https://www.pewresearch.org/facttank/2017/01/12/evolutionoftechnology/?utm_content=bufferdaf6c&utm_m edium=social&utm_source=twitter.com&utm_ca mpaign=buffer rand, d. g. (2012). the promise of mechanical turk: how online labor markets can help theorists run behavioral experiments. journal of theoretical biology, 299, 172-179. santana, s., brach, c., harris, l., ochiai, e., blakey, c., bevington, f., ... & pronk, n. (2021). updating health literacy for healthy people 2030: defining its importance for a new decade in public health. journal of public health management and practice. schulz, p. j., & nakamoto, k. (2013). health literacy and patient empowerment in health communication: the importance of separating conjoined twins. patient education and counseling, 90(1), 4-11. 397 ihtp, 1(3), 390-403, 2021 cc by-nc-nd 4.0 issn 2563-9269 shiferaw, k.b., tilahun, b.c., endehabtu, b.f. et al. (2020). e-health literacy and associated factors among chronic patients in a low-income country: a cross-sectional survey. bmc medical information decision making, 20, 181. https://doi.org/10.1186/s12911-020-01202-1 stellefson, m., hanik, b., chaney, b., chaney, d., tennant, b., & chavarria, e. a. (2011). ehealth literacy among college students: a systematic review with implications for ehealth education. journal of medical internet research, 13(4), e102. stellefson, m. l., shuster, j. j., chaney, b. h., paige, s. r., alber, j. m., chaney, j. d., & sriram, p. s. (2018). web-based health information seeking and ehealth literacy among patients living with chronic obstructive pulmonary disease (copd). health communication, 33(12), 1410-1424. stellefson, m., paige, s. r., alber, j. m., chaney, b. h., chaney, d., apperson, a., & mohan, a. (2019). association between health literacy, electronic health literacy, disease-specific knowledge, and health-related quality of life among adults with chronic obstructive pulmonary disease: cross-sectional study. journal of medical internet research, 21(6), e12165. sheridan, s. l., halpern, d. j., viera, a. j., berkman, n. d., donahue, k. e., & crotty, k. (2011). interventions for individuals with low health literacy: a systematic review. journal of health communication, 16(sup3), 30-54. schatman, m. e. (2012). interdisciplinary chronic pain management: international perspectives. pain: clinical updates, 20(7), 1-5. van deursen, a. j., & van dijk, j. a. (2011). internet skills performance tests: are people ready for ehealth?. journal of medical internet research, 13(2), e1581. watkins, i., & xie, b. (2014). ehealth literacy interventions for older adults: a systematic review of the literature. journal of medical internet research, 16(11), e225. washington, t. a., fanciullo, g. j., sorensen, j. a., & baird, j. c. (2008). quality of chronic pain websites. pain medicine, 9(8), 994-1000. zelaya, c. e., dahlhamer, j. m., lucas, j. w., & connor, e. m. (2020). chronic pain and highimpact chronic pain among us adults, 2019. 398 ihtp, 1(3), 390-403, 2021 cc by-nc-nd 4.0 issn 2563-9269 table 1. definitions health literacy ehealth literacy the degree to which individuals can find, understand, and use information and services to inform health-related decisions and actions for themselves and others” (santana et al., 2021, s259) the ability to seek, find, understand, and appraise online health information and apply such knowledge to address or solve a health problem (norman, & skinner, 2006a; norman, & skinner, 2006b) 399 ihtp, 1(3), 390-403, 2021 cc by-nc-nd 4.0 issn 2563-9269 table 2. participants’ demographics variable level n % gender female 110 56.1 male 86 43.9 ethnicity white 162 82.7 not white 34 17.3 marital status married 97 49.5 not married 99 50.5 work status full-time 136 69.4 part-time 34 17.3 not working 26 13.3 education level hs graduate 23 11.7 some college 49 25.0 2 year degree 32 16.3 4 year degree 66 33.7 graduate degree 26 13.3 duration of chronic pain less than 2 years 51 26.1 2 – 5 years 61 31.1 5 – 10 years 43 21.9 more than 10 years 41 20.9 location of chronic pain back 94 48.0 neck 17 8.7 head 15 7.7 knees 14 7.1 feet/ankles 13 6.6 shoulders 10 5.1 other 8 4.1 general 6 3.1 legs 6 3.1 hands 5 2.6 arms 4 2 hips 4 2 mean s.d. age 40.1 12.1 400 ihtp, 1(3), 390-403, 2021 cc by-nc-nd 4.0 issn 2563-9269 table 3. internal consistency of the health literacy measures measure/scale cronbach’s alpha hlq – having sufficient information to manage my health (hsi) .85 hlq – appraisal of health information (ahi) .70 hlq – ability to find good health information (afghi) .82 hlq – understanding health information well enough to know what to do (uhi) .80 eheals – ehealth literacy (8 items) .86 401 ihtp, 1(3), 390-403, 2021 cc by-nc-nd 4.0 issn 2563-9269 table 4. health literacy summary statistics measure n mean median std. dev. min. max. *hlq – hsi (having sufficient information to manage my health) 196 2.89 3 0.55 1.5 4 *hlq – ahi (appraisal of health information) 196 3.27 3.2 0.41 2.4 4 **hlq – afghi (ability to find good health information) 168 3.68 3.8 0.45 1 4 **hlq – uhi (understanding health information well enough to know what to do) 142 3.66 3.8 0.48 1 4 * rating from 1( strongly disagree) to 4 (strongly agree); **rating from 1( always difficult) to 5 (always easy) 402 ihtp, 1(3), 390-403, 2021 cc by-nc-nd 4.0 issn 2563-9269 table 5. eheals item frequencies n (%) strongly disagree disagree undecided agree strongly agree i know what health resources are available on the internet. 0 (0%) 6 (3.1%) 18 (9.2%) 124 (63.3%) 48 (24.5%) i know where to find helpful health resources on the internet. 1 (0.5%) 7 (3.6%) 17 (8.7%) 119 (60.7%) 52 (26.5%) i know how to find helpful health resources on the internet. 1 (0.5%) 5 (2.6%) 13 (6.6%) 126 (64.3%) 51 (26%) i know how to use the internet to answer my questions about health. 0 (0%) 3 (1.5%) 10 (5.1%) 126 (64.3%) 57 (29.1%) i know how to use the health information i find on the internet to help me. 1 (0.5%) 5 (2.6%) 21 (10.7%) 121 (61.7%) 48 (24.5%) i have the skills i need to evaluate the health information i find on the internet. 1 (0.5%) 7 (3.6%) 21 (10.7%) 108 (55.1%) 59 (30.1%) i can tell high quality health resources from low quality health resources on the internet. 1 (0.5%) 8 (4.1%) 27 (13.8%) 93 (47.4%) 67 (34.2%) i feel confident in using information from the internet to make health decisions. 2 (1%) 20 (10.2%) 30 (15.3%) 105 (53.6%) 39 (19.9%) 403 ihtp, 1(3), 390-403, 2021 cc by-nc-nd 4.0 issn 2563-9269 table 6. regression coefficients for predicting ehealth literacy (i.e., eheals total score) unstandardized coefficients standardized coefficient 95% confidence interval for b b std. error beta t p-value lower bound upper bound intercept 14.667 3.916 --3.746 <.0005 6.921 22.413 hlq2 1.214 0.678 0.144 1.79 0.076 -0.127 2.556 hlq5 4.117 0.852 0.373 4.833 <.0005 2.432 5.801 hlq8 (std) 1.649 0.495 0.413 3.329 0.001 0.669 2.629 hlq9 0.026 0.777 0.003 0.034 0.973 -1.511 1.564 hlq8 (std)2 0.263 0.135 0.229 1.952 0.053 -0.004 0.53 monkman, h., kushniruk, a. w., barnett, j., borycki, e. m., greiner, l. e., & sheets, d. (2017). are health literacy and ehealth literacy the same or different? studies in health technology and informatics, 245:178-182. pmid: 29295077. ihtp, 2(1), 15-25, 2022 cc by-nc-nd 4.0 issn 2563-9269 15 examining the psychological and behavioural patterns of students in sri lanka during covid-19: a qualitative study kalpani abhayasinghe 1, 2, navodya weerasinghe3, lasith dissanayake2, krishani jayasinghe2, duminda guruge2, 4, athula sumathipala2 1department of nursing & midwifery, faculty of allied health sciences, general sir john kotelawala defence university, sri lanka, 2 institute for research and development in health and social care, sri lanka, 3coventry university, united kingdom,4department of health promotion, faculty of applied sciences, rajarata university of sri lanka, sri lanka corresponding author: k. abhayasinghe (mpkw.abhayasinghe@kdu.ac.lk) abstract background: the severe acute respiratory syndrome coronavirus 2 (sars-cov-2) or covid-19 pandemic affected many international students, including the sri lankan youth and young adults who were studying in the united kingdom (uk), and repatriated to the motherland during the first wave. the current study aimed to explore and understand the lived experiences, behaviour, and psychological patterns of these students during their lockdown in the uk; quarantine and self-isolation; and repatriation back to sri lanka. methods: this descriptive qualitative study was planned and conducted in a quarantine environment based on the lived experiences of two authors (ka and nw), who were also repatriated students due to covid-19 pandemic. a convenient sample of sixteen (16) repatriated students (age ranged from 18 – 34) participated in the study. data was collected using multiple methods including questionnaires, researchers’ objective observations and semi-structured interviews (conducted over the phone or online). the thematic analysis method was used for data analysis. results: both positive and negative psychological and behavioural patterns were observed. three themes emerged were: (1) fear, worry and anxiety, (2) irritability and agitation, and (3) adherence to safety precautions. many reported negative abrupt changes to their education and lifestyles during this stressful situation. perceived stigma and emotional imbalance have caused difficulty in coping. positive changes such as increased efficacy in academic activities, exploring new hobbies and healthy coping skills were also reported. conclusion: findings highlight the need for addressing age-specific behavioural, psychological, and educational needs of youth and young adults when developing guidelines to manage similar situations in the future and to increase resilience. keywords covid-19, psychological and behavioural patterns, repatriation, young adults, youth funding source this project was funded by the institute for research and development in health and social care sri lanka (ird). background the severe acute respiratory syndrome coronavirus 2 (sars-cov-2) disease (covid-19) affected the lives of many people worldwide. to control the spread, governments of covid-19 affected countries enforced nationwide measures including lockdown, curfew, travel restrictions, restrictions in public gatherings, physical distancing, enforcing mask wearing and other sanitary practices (lewnard & lo, ihtp, 2(1), 15-25, 2022 cc by-nc-nd 4.0 issn 2563-9269 16 2020). this resulted people to be home confined and they started working from home, homeschooling, and staying indoors (watkins, 2020). international measures include closure of airports to mitigate the spread of the virus across countries (killeen and kiware, 2020; gössling, scott and hall, 2020). majority of the international students studying abroad faced challenges as they were not able to move back to their home countries during the pandemic. for example, sri lankan students who were studying in china, the united kingdom, australia, the united states, russia, belarus, and singapore requested the government to facilitate them return home during the pandemic. the temporary closure of schools and universities resulted in disruption of the usual academic process, sudden and abrupt changes to academic activities, social lives, daily lifestyles, and psychological wellbeing of the university students who were studying abroad. by mid-april 2020, 192 countries had closed schools, affecting more than 90% (nearly 1.6 billion) of the students around the world (donohue & miller, 2020). however, with re opening of academic institutions in some countries, by mid march 2021 the affected number has decreased to 1.5 billion (unesco, 2020). evidence indicates that quarantine process during sars outbreak in years 2002/2003 resulted depression, low mood, fear, other psychological symptoms, and many negative outcomes (lau et al., 2005; person et al., 2004). young age (16-24), lower levels of educational qualifications and female gender are some of the predictors that increase negative psychological symptoms (brooks et al., 2020). young adults are vulnerable in developing negative psychological conditions when they are subjected to prolong home confinement, isolation, and physical distancing from others (shanahan et al., 2020). changes in everyday lives due to home confinement, online education, travel restrictions, and airport closures affected negatively for many foreign students and their families (gössling et al., 2021; torales et al., 2020). however, there can be positive changes to one’s lifestyle and behavior, for example, some may find increased productivity during self-isolation due to less distractions, enhanced coping, team working, new connections established via online communication, social support from the close contacts and health care professionals at quarantine centers (chen et al., 2020), peer support during quarantine period and specially the opportunity they got to return to their families in home countries. it is not clear how long the covid-19 pandemic will continue to limit usual academic and lifestyles of this group of students. clearly, there are challenges of continuing academic activities such as attending online virtual classes and completing assignments while being under quarantine with limited resources and distractions. it is important to understand ‘how youth and young adults responded to covid-19 while studying in abroad, being under lockdown in the uk, during and after repatriation?’ to address this research question, the current study was conducted with an aim to explore the impact of being under lockdown, self-isolation, repatriation, and quarantine processes during the journey from the uk to sri lanka, on the behavior and psychological changes on this youth and young adult group. methods design and sample a descriptive, qualitative study was carried out over a period of four weeks in mid-may to june 2020. the study setting was one of the government quarantine centres located in colombo. a convenient sample of university students (n=16) who were studying in the uk and repatriated back to sri lanka were recruited for the study. recruitment participant recruitment and data collection were carried out by the two researchers (ka and nw), who are also sri lankan students studying in the uk, repatriated back to sri lanka from the uk due to covid-19 pandemic and was in the same quarantine center. in terms of recruitment strategies, the research team informed the purpose of the study to the administrative members of the quarantine centre and referred interested individuals who met the inclusion criteria. due to strict quarantine procedures, we could only include the students who repatriated back to sri lanka from the uk in the same flight and those ihtp, 2(1), 15-25, 2022 cc by-nc-nd 4.0 issn 2563-9269 17 who were at the quarantine centre by the time we conducted the study. the potential participants consist of a group of sri lankan youth and young adults. for this study, we defined youth as individuals in the 18 – 24 years age group and young adults as the 25 – 35-year age group. there were undergraduates, master, and phd students among them. investigators who were at the quarantine centre shared information about the study. the participants were provided enough time to read and understand the information and to clarify any questions they had before deciding to take part in the study. out of the 40 repatriated students in this group, sixteen consented to take part in the study via the online messaging platform. data collection three investigative methods were used for data collection: (1) researcher’s objective observations to explore individual and group behaviour patterns, (2) questionnaires (including demographic information questions, the generalized anxiety disorder 7-item (gad-7) scale and (3) semi-structured interviews (over the phone or online) to explore participants’ lived experience. the gad-7 is a self-report screening tool for generalized anxiety symptoms which has been successfully disseminated in community and primary care settings. the gad-7 consists of seven questions based in part on the dsm-iv criteria for gad and reflects the frequency of symptoms during the preceding 2-week period. the scale requires approximately 1–2 minutes to administer and for each symptom queried provides the response options as: “not at all,” “several days,” “over half the days” and “nearly every day” and these are scored, respectively, as 0, 1, 2 or 3 (mossman et al., 2017). the seven items assess (1) feeling nervous, anxious, or on edge; (2) being able to stop or control worrying; (3) worrying too much about different things; (4) trouble relaxing; (5) being restless; (6) becoming easily annoyed or irritable; and (7) feeling afraid as if something awful might happen (cattivelli et al., 2019). data collection was conducted at three phases: phase 01: at the time of obtaining the consent, participants were asked to complete a short demographic questionnaire and the gad-7 scale (circulated online via closed whatsapp group or email). in-depth, semi-structured interviews were conducted using a topic guide to further explore the real-life experience and perceptions of being locked down in the uk, repatriated to sri lanka and quarantined. observation of students’ behaviour and day-to-day practices at the quarantine centre was considered appropriate as a data collection method as ka and nw could interact with them and observe them in a real-life environment (dwyer & buckle, 2009). as a coping method, ka and nw maintained independent personal journals to keep notes on their experience and objective observations while they were under lockdown in the uk and continued this exercise during repatriation and while staying at the quarantine centre. we used these journals as a data source (branquinho et al., 2020; kingdon, 2005). phase 02: observation and interviews were conducted. gad-7 scale was administered online at the end of the quarantine period in sri lanka. the semi-structured interview guide consisted of several questions to explore participants’ lived experience and perceptions of being locked down in the uk, repatriated to sri lanka and being quarantined. phase 03: gad-7 scale was administered three weeks after the students being sent home at the completion of quarantine (after a week of completion of self-isolation at home). a follow up interview was conducted over the phone in two three weeks after the students being sent home at the completion of quarantine period. purpose of this short interview was to explore participants’ views and perceptions of life after quarantine period, for example, feeling of going home and joining with their loved ones. all the interviews were transcribed verbatim. diary entries and interview transcripts were anonymized to maintain the confidentiality of the participants and to prevent them from being traced back. qualitative data analysis was conducted using thematic analysis (alhojailan & ibrahim, 2012; clarke & braun, 2013). simple descriptive statistics were used when presenting demographic information where relevant. ethics consideration ethical approval for the study was obtained from the ethics review committee of rajarata university of sri lanka (ref: erc/2020/38). investigators shared ihtp, 2(1), 15-25, 2022 cc by-nc-nd 4.0 issn 2563-9269 18 information about the study via a closed whatsapp group and invited the students to take part in the study. those who agreed to take part voluntarily were recruited using an online consent form, developed via google forms. the student group were informed verbally regarding the objective observation of their psychological and behavioural patterns on the day one at the arrival of quarantine centre. interviews were conducted online considering the ease of convenience and the need of maintaining physical distancing measures at the quarantine centre. results all participants were of sri lankan descent. the sixteen participants consisted of 50% females and 50% males. their age ranged from 18 – 34 years. all of them were in the middle of their higher studies, some were nearly completing their respective degrees. the majority were sinhala buddhists. demographic information is illustrated in the table 1. findings indicate both positive and negative psychological and behavioural impacts. four themes emerged namely, (1) fear, worry and anxiety, (2) adherence to safety precautions (3) loneliness and (4) coping. fear, worry and anxiety majority of the students reported that they were not worried about the condition at first (i.e., during the epidemic level at china) and conducted their normal routines until the lockdown started in the uk. however, they mentioned that they were worried, when the covid -19 reached sri lanka and europe, and realised the seriousness of the situation. “at first, i thought it would not go for pandemic scale. i thought it would just stay in china. so, i wasn’t taking it that seriously. when the outbreak reached around europe, in italy and spain, the more i realised it’s a serious issue.” (p01) almost all of them were worried that their academic activities hindered during the lockdown period due to the university closure. and after repatriation, mode of studies changed to distanced and online learning. some said, their parents were worried of them staying in the uk alone, thinking they had no access to health care facilities if things go wrong. some were afraid of being exposed to covid-19 infection during repatriation. many were afraid towards social stigma and discrimination. “i wasn’t worried or panicking that much. but my parents were… since they were in sl and i was in the uk. they kept on thinking about the distance between us […] it was quite of a pressure for me. i was worried about them more than worrying about myself.” (p04) “i started getting anxious at the end. i realised that it’s not that easy as you think it is, since i didn’t have any flat mate or friend whom i can rely on in an emergency.” (p03) “i still don’t know what to expect once i go home, how people view me… whether as a diseased person or i’m like corona virus career, like i would just be spreading all over… i keep thinking what people would think about my parents as well.” (p01) it was reported that their anxiety levels and fears were increased during the lockdown period in the uk and repatriation due to perceived risk of being exposed to the infection. when asked about how they were coping, many reported that they ‘felt at ease’ after coming back to sri lanka. some had experienced stigma and discrimination on arrival at the airport and some experienced it after going home. this resulted in increasing their anxiety levels. the evidence reflected by gad support these findings (table 2). reasons for these emotional fluctuations were different in each stage of the process. “in the uk… i had worst mental break downs, and overslept, and just kept thinking ‘is this going to finish or not?’ the travelling part was a bit overwhelming. but the overall process in quarantine is good.” (p01) observation notes from the researcher diaries support findings from the interviews regarding the increased anxiety and fear on the first day at the quarantine centre, but gradual decrease of anxiety and fear towards the end of the quarantine period. “those who repatriated appeared to be afraid of the staff who were wearing ppe. they asked many ihtp, 2(1), 15-25, 2022 cc by-nc-nd 4.0 issn 2563-9269 19 questions from the staff and worried about the body temperature. all students wore masks all the time. they stayed in rooms and only appeared at the door to check temperature or when the meal arrived.” (observation notes, day 01 at quarantine) “students sang songs together in the corridor. some played games together. they do not spend all day inside the room. student helped and cared for each other.” (observation notes, day 10 at quarantine) gad-7 data also are in line with the qualitative findings and shows the gradual decline of anxiety levels among many of the participants (table 2). according to table 2, many participants reported mild or minimal severity regarding their anxiety level. however, the in-depth interviews revealed that the anxiety levels are much higher than the reported gad-7 scores in many cases, and the level of anxiety explicitly indicated in gad-7 scores was not fully reflective of the fear, worry and anxiety indicated in interviews. the discrepancy between the anxiety expressed during interviews and the gad-7 scores indicates that the quantitative measures cannot capture sensitive emotions and feelings, instead qualitative methods can give more construct to this context. adherence to safety precautions level of adherence to the safety precautions among the study participants seem to fluctuate over time. best adherence was reported at the beginning of the lock down in the uk and during the repatriation process. “at first i... i think i was quite reckless. but then i realised [the risk] ... whenever i got my groceries i washed most of the things as soon as i got to kitchen. i think i got pretty paranoid about it… i kept washing my hands and i made sure that i had at least 3 sanitizers with me. my shoes, i sprayed them with ethanol and stuff [laugh].” (p01) girls reported more adherence when compared to boys all the time. however, the students appeared to feel normalised in living with covid19 over time and complained of ‘getting bored, forgetting to adhere to safety precautions’ while they are in the uk: “at the beginning i was very keen. later on, i started forgetting things… perhaps i got bored and wasn’t bothered to do it. sometimes i did it just because my family members reminded that so often when they called me.” (p02) “i was like, ‘why should i keep doing this? it’s a headache. it’s too much of work’. but at the same time, i kept saying to myself, you should do it or else no body is there to do it for you.” (p01) many students reported experiencing irritability and agitation during the lockdown period in the uk. low mood, arguments with their parents or partners, overly sleeping, gaming or increased screen times were reported because of inadequate coping of isolation and adherence to strict physical distancing and safety guidelines. “i got quite irritated even for smaller things really quickly... even if my parents called me and ask something really simple, like ‘are you okay?’ that irritated me pretty easily. i had to answer the same question… i kept hearing the same news over and over again throughout the day and night. at some point i even wanted to avoid people… i mean the phone calls came from [my loved ones].” (p05) loneliness some participants felt they were lonely when they were in the uk and when they see others flew home, they felt deserted. “a friend, of mine who is like a sister to me… flew home just before the airport closure… i was supposed to fly a week after but had to stay a month or so. it touched me. then only i started worrying… i felt that loneliness, and… i felt like i was lost and deserted…” (p02) several students were in contact (via online) with each other to receive repatriation updates before they first meet at the flight. some reported that they felt less lonely as they got along with others and became a part of the group. “i got to know [names of other students] when i became a part of the online group [students’ group], i became a volunteer to support others, it gave me ihtp, 2(1), 15-25, 2022 cc by-nc-nd 4.0 issn 2563-9269 20 hope, because they’re working on it [repatriation], rather than being isolated… it was so good to have company…” (p02) physical distancing measures affected their everyday lifestyles. some students reported very low mood as they were alone because they did not have opportunity to meet friends or go to university. some experienced financial difficulties also. “i felt alone when i was not able to go out… some days were like… ‘i don’t have any family here… and what happens if you won’t be able to go home’. i couldn’t go to my part time, and i had no money. so, all sort of thoughts were there…” (p05) all reported that they were happy to reunite with family members. coping when considering the coping mechanisms practiced by this group of young adults, it was seen that both negative and positive means of coping were there. some reported increased use of internet, gaming, and screen time during the lock down and quarantine period. some had developed unhealthy behaviours such as over-sleeping during the day, over-eating, and smoking. some students had engaged in drawing and doing other leisurely activities during the lockdown and while at the quarantine centre. during the quarantine period, researchers observed group behaviours among students, where individuals with similar interests were seen together often. sometimes, there were discussions among student groups regarding maintaining cleanliness of common areas, and complaints of being noisy while others were studying. however, amidst the negative aspects, some also reported positive experiences such as improved work efficiency, increased productivity during self-isolation due to less distractions. master or phd students demonstrated better coping skills when compared to younger students perhaps due to their potential lived experience and level of maturity. “it was an adventure, a good experience. i managed to get most of my work done during the lockdown in the uk and while being under quarantine here.” (p02) some students were happy about making new friends making new friends, team working, establishing new connections via online communication, and receiving peer support during the quarantine period. “i became really close with some new friends. met interesting people unexpectedly. we were in the same boat, and we all faced the same storm. perhaps that glued us together. so, that togetherness was quite a good feeling. i feel good, i felt quite comfortable around them.” (p06) it also appeared that the religious practices and beliefs of the students could help the participants to cope with difficult situations. for example, a buddhist student mentioned that she was practicing meditation to ‘calm herself during the lockdown period’. a catholic participant mentioned: “on the days i felt so low, i prayed to the god thinking of my family. i was hoping to be with them as soon as i can.” (p13) a few students said that they became strong, developed coping skills and the entire experience changed their behaviour and perspectives towards life. “how much a virus could do? we witnessed shocking deaths of many. it just changed my way of looking at world. i learned to be patient as the repatriation got delayed. i learned to appreciate the courage i have.” (p 07) discussion findings indicated both positive and negative psychological and behavioural patterns with respect to the emerged themes. many of the participants have been experiencing fear, worry, anxiety, irritability, overeating, over sleeping, increased screen time and gaming, and smoking during the lockdown period in the uk. restlessness, uncertainty, and boredom resulted in agitation, irritability, or addictions. prolong home confinement during a disease outbreak can have negative effects on young people’s mental, physical health and behaviour (liu et ihtp, 2(1), 15-25, 2022 cc by-nc-nd 4.0 issn 2563-9269 21 al., 2020). less physical activities, outdoor activities, and inability to interact with friends and family may cause changes to their psychological and behavioural patterns. for example, an exhibition of discomfort in forms of confusion, anger, aggressiveness, irregular sleep patterns, addiction to internet or screen time (tv or computer) and less favourable diet preferences were commonly reported among young people (brooks et al., 2020; wang et al., 2020). prior to the outbreak of covid-19, similar epidemics such as sars (during 2002-2003), led to major self-isolation procedures and quarantining of individuals, during the absence of a proper treatment method (chen et al., 2009). like the findings of the current study, chan et al. (2007) reported that dramatic changes in lifestyles due to lock down and physical distancing may be accompanied by fear of being infected to self or loved ones resulting in a significant negative impact to their psychological wellbeing. many participants in the current study reported that lack of access to health care, uncertainty and loneliness caused them fear in the uk, but have ‘felt at ease’ when they got the news of repatriation and stared ‘feeling positive’ during the quarantine and ‘not worried’ after going home. adherence to safety precautions was reported higher during the lockdown period in the uk and throughout the repatriation process but reduced during the quarantine period and after going home. these findings contribute new insights to existing evidence, especially with regards to possible implications for practice that involve drawing on this study to develop interventions to support international students in the future. empirical evidence indicates that quarantine processes result in depression, low mood, fear, confusion, anger, and other psychological issues such as post-trauma stress symptoms among youth (brooks et al., 2020; lau et al., 2005). nevertheless, the current study shows positive changes and experiences such as increased efficacy in their academic activities, exploring new hobbies, adventure, befriending and healthy coping skills (e.g., cooking, painting). this study was planned and conducted in a quarantine environment based on the lived experiences of investigators; therefore, it is a firsthand experience research where the researchers are also present in the setting, overtly observing the participants. researchers who were in the quarantine centre (ka and nw) think that objective observations and journal keeping was fun. it was also a good coping mechanism during this difficult period. two of the researchers were fully immersed in the study as they were able to live in the same environment, could interact with the participants and observe students’ behavior patterns (dwyer & buckle, 2009). the investigators learnt positive life lessons by actively participating in this research and being able to share their lived experience during this difficult period. the current study did not explore the role of different religious coping strategies. however, the findings showed that religious beliefs and practices could help the study participants to cope with their anxiety especially during the lockdown period in the uk. there is evidence to show that people who use religious coping strategies during difficult situations in their lives, are less likely to experience depression symptoms (aflakseir & mahdiyar, 2016). even though many participants of the current study were sinhala buddhists, findings did not seem to have a significant influence on their ethnicity or religion. however, it will be interesting to explore further in future research regarding the impact of religious beliefs and practices of individuals who experience similar situations. despite the strengths mentioned, one major limitation of this study is high drop-out rate of participants at the end of phase 02. most participants were not interested to fill online questionnaires or to take part in the interviews planned after completion of quarantine period. perhaps they lost the interest to contribute to study once they left the quarantine center to be with their loved ones. another limitation is that the study included international students repatriated only from the uk and who took the same flight. the quarantine centre followed strict guidelines on physical distancing and communicating with others who arrived later. therefore, it was not possible to advertise the study to incoming individuals at the centre. present study contributes to the research gap in the present literature regarding the impact of covid19 on this age group with regards to a sri lankan population of international students. this study also provides evidence-based guidance on identifying how the students responded to the closure of schools and ihtp, 2(1), 15-25, 2022 cc by-nc-nd 4.0 issn 2563-9269 22 universities, how they coped with their studies during a time of a pandemic. possible outcomes from this study will help to identify and address psychological and educational needs, challenges, coping strategies of youth and young adults in this group and help developing guidelines to manage similar situations in future and increase resilience. however, due to the exploratory nature of the study as well as its small sample size, the findings may not be generalised and therefore, it would be better taking caution when drawing evidence-based guidance from this study. furthermore, it would be interesting to conduct more studies among different age groups such as middle age, and older adults with similar experiences of repatriation to compare the findings as well as to explore participants’ resilience and perceived ability to deal with potential life stressors in difficult situations like covid pandemic (i.e., feeling more confident from having developed improved coping strategies for stressors versus feeling more scared with regards to experiencing certain aspects of something like this again). especially, since sri lanka is a country with a collectivistic culture, it would be very interesting to see how different communities faced the challenges during covid-19 pandemic. potential lessons learned regarding resilience could then be used to develop and test interventions for conclusion as mentioned earlier, youth and young adults are high-risk groups of individuals who are more likely to develop negative psychological and behavioral patterns during disease outbreaks. understandings gained by the current study will help the future researchers, psychologists, students, and other readers to identify the immediate challenges faced by the youth under global emergencies. identified psychological and behavioural patterns, coping mechanisms used by them will be of use when planning possible interventions that could be implemented in similar situations in the future. acknowledgment we thank all the participants who took part in the study. we are grateful to mr. titus karunaratne and mr. madura hewamulla for their encouragement and support during the data collection process. special thanks to the administrative members of the quarantine centre for their support to conduct this study. references aflakseir, a., & mahdiyar, m. (2016). the role of religious coping strategies in predicting depression among a sample of women with fertility problems in shiraz. journal of reproduction and infertility, 17(2), 117–122. alhojailan, m. i., & ibrahim, m. (2012). thematic analysis : a critical review of its process and evaluation. wei international european academic conference proceedings, 1(2011), 8– 21. branquinho, c., tomé, g., grothausen, t., & gaspar de matos, m. (2020). community-based youth participatory action research studies with a focus on youth health and well-being: a systematic review. journal of community psychology, 48(5), 1301–1315. brooks, s. k., webster, r. k., smith, l. e., woodland, l., wessely, s., greenberg, n., & rubin, g. j. (2020). the psychological impact of quarantine and how to reduce it: rapid review of the evidence. the lancet, 395(10227), 912–920. cattivelli, r., anna donati, m., muramatsu, k., urnes johnson, s., gunnar ulvenes, p., øktedalen, t., & hoffart, a. (2019). psychometric properties of the general anxiety disorder 7-item (gad-7) scale in a heterogeneous psychiatric sample. chan, s. s. c., leung, d., chui, h., tiwari, a. f. y., wong, e. m. y., wong, d. c. n., barnsteiner, j. h., & lau, y. l. (2007). parental response to child’s isolation during the sars outbreak. ambulatory pediatrics, 7(5), 401–404. chen, d., song, f., tang, l., zhang, h., shao, j., qiu, r., & ye, z. (2020). quarantine experience of close contacts of covid-19 patients in china: a qualitative descriptive study. general hospital psychiatry, 66, 81–88. chen, w. q., ling, w. h., lu, c. y., hao, y. t., lin, z. n., ling, l., huang, j., li, g., & yan, g. m. (2009). which preventive measures might protect health care workers from sars? bmc public health, 9(1), 81. clarke, v., & braun, v. (2013). teaching thematic analysis: overcoming challenges and developing strategies for effective learning. donohue, j. m., & miller, e. (2020). covid-19 and ihtp, 2(1), 15-25, 2022 cc by-nc-nd 4.0 issn 2563-9269 23 school closures. in jama journal of the american medical association. 324(9): 845– 847). dwyer, s. c., & buckle, j. l. (2009). the space between: on being an insider-outsider in qualitative research. international journal of qualitative methods, 8(1), 54–63. gössling, s., scott, d., & hall, c. m. (2021). pandemics, tourism and global change: a rapid assessment of covid-19. journal of sustainable tourism, 29(1), 1–20. killeen, g. f., & kiware, s. s. (2020). why lockdown? simplified arithmetic tools for decision-makers, health professionals, journalists and the general public to explore containment options for the novel coronavirus. in medrxiv (p. 2020.04.15.20066845). medrxiv. kingdon, b. c. (2005). reflexivity: not just a qualitative methiodological research tool. british journal of midwifery, 13(10), 622–628. lau, j. t. f., yang, x., pang, e., tsui, h. y., wong, e., & yun, k. w. (2005). sars-related perceptions in hong kong. emerging infectious diseases, 11(3), 417–424. lewnard, j. a., & lo, n. c. (2020). scientific and ethical basis for social-distancing interventions against covid-19. in the lancet infectious diseases (vol. 20, issue 6, pp. 631–633). lancet publishing group. liu, j. j., bao, y., huang, x., shi, j., & lu, l. (2020). mental health considerations for children quarantined because of covid-19. the lancet child & adolescent health, 2019(20), 2019– 2020. mossman, s. a., luft, m. j., schroeder, h. k., varney, s. t., fleck, d. e., barzman, d. h., gilman, r., delbello, m. p., & strawn, j. r. (2017). the generalized anxiety disorder 7-item (gad-7) scale in adolescents with generalized anxiety disorder: signal detection and validation. annals of clinical psychiatry, 29(4), 227-234a. person, b., sy, f., holton, k., govert, b., liang, a., garza, b., gould, d., hickson, m., mcdonald, m., mejer, c., smith, j., veto, l., williams, w., & zauderer, l. (2004). fear and stigma: the epidemic within the sars outbreak. emerging infectious diseases 10 (2): 358–363. shanahan, l., steinhoff, a., bechtiger, l., murray, a. l., nivette, a., hepp, u., ribeaud, d., & eisner, m. (2020). psychological medicine emotional distress in young adults during the covid-19 pandemic: evidence of risk and resilience from a longitudinal cohort study. torales, j., o’higgins, m., castaldelli-maia, j. m., & ventriglio, a. (2020). the outbreak of covid-19 coronavirus and its impact on global mental health. international journal of social psychiatry 66(4): 317–320 unesco. (2020). 1.3 billion learners are still affected by school or university closures, as educational institutions starts reopening around the world, says unesco. global education coalition. wang, g., zhang, y., zhao, j., zhang, j., & jiang, f. (2020). mitigate the effects of home confinement on children during the covid-19 outbreak. the lancet, 395(10228), 945–947. watkins, j. (2020). preventing a covid-19 pandemic. the bmj, 368:m810. ihtp, 2(1), 15-25, 2022 cc by-nc-nd 4.0 issn 2563-9269 24 table 1. demographic variables demographic variables descriptive summary age (years) x ̄= 24.93; sd = 1.58 gender (%) male = 50% religion (%) buddhist = 81.25% ihtp, 2(1), 15-25, 2022 cc by-nc-nd 4.0 issn 2563-9269 25 table 2. gad – 7 scale – level of severity of anxiety phase 1 (n=16) phase 2 (n=16) phase 3 (n=16) mild = 50% minimal = 37.5% severe = 12.5% none = 18.75% mild =18.75% minimal = 56.25% severe = 6.25% none = 50% mild = 18.75% minimal – 25% moderate = 6.25% . issn 2563-9269 61 a scoping review of insomnia treatments for people living with hiv joyal miranda1, souraya sidani1, josé côté 2, suzanne fredericks1 1daphne cockwell school of nursing, ryerson university, ryerson university, toronto, ontario, canada; 2faculty of nursing, université de montréal and center de recherche, university hospital of montreal (crchum), quebec, canada corresponding author: j. miranda (joyal.miranda@ryerson.ca) abstract to date, little is known in terms of viable treatments for insomnia in people living with hiv. the primary aim of this scoping review is to identify non-pharmacological treatments for insomnia in people living with hiv. a framework by arksey and o’malley was used to guide the conduct of this scoping review. seven studies were identified. three of the studies used cognitive-behavioral type of treatments versus physical or alternative types of treatment. the most effective treatments with the largest effect sizes (es=1.11 to 1.91) were found to be cognitive-behavioral treatments for the sleep outcomes of sleep quantity and sleep quality. this review found that cognitive behavioral interventions were found to be the most effective treatments for insomnia for people living with hiv. further research would benefit from larger sample size studies in addition to focusing on the determinants of insomnia in people living with hiv in order to further provide a treatment that is focused on the needs of people living with hiv. keywords people living with hiv, sleep disturbances, insomnia, cognitive-behavioral treatment, hiv/aids introduction sleep is a vital biological process to the everyday lives of individuals supporting optimal health, yet it is something that individuals struggle with daily. sleep plays an important role in one’s psychological state, cognitive performance, as well as functioning of immune, hormonal, and cardiovascular systems (medic et al., 2017; zielinski et al., 2016). it affects up to one-third of the general population, with 10-35% estimated to suffer from sleep disturbances (low et al. 2014; wu et al., 2015; jabbari et al., 2015). poor sleeping habits, lifestyle choices, psychological issues, environmental factors, medical conditions and medications are factors contributing to sleep disturbances (medic et al., 2017). insomnia is a sleep disturbance, characterized by difficulty initiating or maintaining sleep for at least three nights per week for three months or longer (american psychiatric association, 2013). those ihtp, 1(1), 61-73, spring 2021 cc by-nc-nd 4.0 diagnosed and living with insomnia may experience a low quality of life, low daytime functioning, impaired cognitive functioning, and reduced work productivity, potentially increasing health services utilization and mortality rates (bhaskar, hemavathy, prasad, 2016; straten, zweerde, kleiboer, cuijpers, morin, lancee, 2017). furthermore, chronic insomnia may result in additional significant health problems among individuals who may already be dealing with chronic illnesses. currently, there is a significant number of studies including meta-analysis that have investigated various treatments for insomnia within the general population, as well as specific sub-populations with psychiatric and medical conditions such as depression, anxiety, cardiovascular disease and cancer (chung et al., 2018; van stratten et al., 2018; gong et al., 2016; wu, appleman, salazar, ong, 2015; geiger-brown, rogers, liu, ludeman, downton, diaz issn 2563-9269 62 abad, 2015; miranda, sidani, fredericks, fox, 2017;johnson, rash, campbell, savard, gehrman, perlis, carlson, garland, 2016). a common insomnia treatment that has been supported empirically is that of cognitive behavioral treatment insomnia (cbt-i) (morin, beaulieu_bonneau & cheung, 2019). cbt-i is highly recommended because it involves psychological approaches to the management of insomnia; these approaches are likely to produce sustained benefits without incurring the risk for tolerance or adverse side effects that are often associated with pharmacological approaches (trauer, qian, doyle, rajaratnam, cujnnignton, 2015). cbt-i is grounded in the theories of behavior change, psychology and sleep. with a strong empirical support, cbt-i is considered as the first-line treatment for insomnia (quaseem, forciea et al., 2016). even though there is strong empirical support for the effectiveness of cbt-i in various populations, few studies have focused on effects of treatment for people living with hiv (plwh). several studies have systematically examined the experience of insomnia in plwh as well as describing insomnia and factors contributing to insomnia in this population. (taibi, 2013; rogers et al., 2018; jean-louis et al., 2012; jabbari et al., 2012, wu et al., 2015). plwh are a subpopulation reported to suffer from insomnia more so than the general population (low et al. 2014; wu et al., 2015; jabbari et al., 2015). it is estimated that 2997% of plwh experiences sleep disturbances such as insomnia (low et al., 2014). this estimate is well above that of the general population (low et al. 2014; wu et al., 2015; jabbari et al., 2015). for instance, webel et al. (2013), jean-lous et al. (2012), and wu et al. (2015) reported insomnia as being one of the earliest and most distressing complaints of plwh and as a frequently occurring symptom across all stages of the hiv disease. some studies examined possible clinical factors for the high prevalence of insomnia within this population. clinical factors included the type of hiv medication, time since diagnosis, viral load, cd4+ cell count and presence of other diseases (low et al., 2014; jean-louis et al., 2012). these clinical factors contribute to insomnia above and beyond the factors of age, sex, physical health and mental health status that are also prevalent in this sub-population and others as well as the general population (garland, rowe, repa, fowler, rhou & ihtp, 1(1), 61-73, spring 2021 cc by-nc-nd 4.0 grandner, 2018; morin, leblanc, belanger, ivers, chantal, merette & savard, 2011). the impact of insomnia on plwh may be more severe than that of the general population or other sub-populations given the additional clinical factors being considered such as disease exacerbation. not only does insomnia affect a greater proportion of plwh than the general population, but it also has significant effects on the individual, that also surpass those experienced by the general population. untreated insomnia in plwh may lead to poorer disease outcomes; poor medication adherence which further complicates clinical management of the disease as it may cause loss of virologic control. individuals may also develop drug resistant strains of the disease leading to treatment failure (low et al., 2014; webel etal., 2013; rogers et al., 2018; jeanlouis et al., 2012; wu et al., 2015; jabbari et al., 2015). lastly, insomnia also affects the individual’s immune status which is already compromised by the disease itself (low et al., 2014). aim the inter-relationship among sleep, the immune system and hiv infection underscores the importance of examining insomnia in plwh and treatments for the management of insomnia in plwh. to date, little is known in terms of viable treatments for insomnia in plwh; therefore, the primary aim of this scoping review is to identify non-pharmacological treatments for insomnia in plwh. methods a scoping review was undertaken in order to address the broad topic of insomnia interventions for plwh regardless of the type of research designs used. in particular, arksey and o’malley’s (2005) framework was used to guide the scoping review. a key strength of the framework is that it provides a rigorous and transparent method for mapping areas of research, making it possible to identify and describe interventions found effective as well as identify the gaps in the evidence base (arksey and o’malley (2005). the framework encompasses five steps. step 1: identifying the research question the main research question for this scoping review was: what non-pharmacological treatments have issn 2563-9269 63 been used to address or manage insomnia in plwh? the secondary aims of the study are to identify: 1) how the term insomnia is defined within the studies; 2) data collected relevant to hiv status and insomnia; 3) the types of treatments used to manage insomnia; and 4) the outcomes of the treatments, in particular those related to insomnia. step 2: identifying relevant studies the search was conducted with no restrictions on time of publication, in order to capture a broader understanding of the types of studies conducted in the area of insomnia treatment and plwh. the search was done in the following databases: medline, psychinfo, cinahl and pubmed. the search terms or key words included: insomnia, sleep disruption, hiv, people living with hiv, treatment, therapy and intervention. in each database, the search was limited to peer-review and excluded books. search modes and expanders included finding all search terms and matching terms to subject heading. once all database searches were completed, there were a total number of 899 hits. each individual database search was uploaded into a document file. the individual files were then merged into one file in order to detect duplicates. of the original 899 hits, 398 were identified as duplicates and removed, leaving 501 articles to be reviewed for eligibility into the scoping review. prior to the screening of the titles and abstracts, eligibility criteria for the articles were discussed and agreed upon by the full research team. the principal investigator did the initial screening of titles and abstracts. in order to verify reliability of screening, a random sample of articles from the literature search were chosen in which an additional researcher from the team also screened the title and abstracts for initial eligibility. there was 95% agreement in terms of the screening of title and abstracts for eligibility in addition to the coding of the rationales for excluding the articles. from the title and abstract screening, a total of 7 studies were deemed eligible. a full-text review of the 7 studies was undertaken by the full research team in which 100% agreement was obtained to include the 7 studies in the scoping review. the reference lists of the selected studies were also reviewed by the principal investigator in order to locate additional relevant studies that may have been missed in the database searches. this additional search did not retrieve additional studies. ihtp, 1(1), 61-73, spring 2021 cc by-nc-nd 4.0 step 3: study selection studies were selected if: the target population was comprised of people living with hiv; a treatment was given to manage insomnia; and treatments were of a non-pharmacological nature. in reviewing the title and abstract of the 501 articles, 494 were deemed as non-eligible because: 1) the population under study were plwh but there was no focus on insomnia (n=279); 2) studies examined and mainly described the experience of insomnia and plwh and did not provide any treatment (n=126); 3) main focus was the pharmacological treatment of insomnia for plwh (n=5); 4) studies addressed insomnia and/or treatment but did not include plwh (n=22) and 5) studies in which the terms (insomnia, insomnia treatments or plwh) were mentioned in the article but were not the focus of the study (n=62). a total of seven studies were included in the scoping review. see figure 1 for flow of studies into the scoping review. step 4: charting of data the data extraction chart was initially designed by the principal investigator, reviewed and approved by the co-investigators. the data extraction items included: study authors, publication date and title; study aim/objective; study population (including number of participants and inclusion/exclusion criteria); whether insomnia was explicitly defined (definition provided); measures of insomnia (including sleep parameters such as sleep duration); description of the treatment provided; and results related to the effects of the treatment on insomnia. step 5: collating, summarizing and reporting the results the results obtained from the data extracted in step 4 were synthesized where possible and are discussed in the results section. results characteristics of the selected studies table 1 identifies the characteristics of the studies included in the scoping review. majority (86%) of the studies were from the united states of america (n=6); the majority (58% to 81%) of participants were men. on average, the mean age of the participants ranged issn 2563-9269 64 from 40 to 48 years. all studies (n=7) used some variation of an experimental design, with the majority (71%) using a randomized controlled design with a notreatment or instructed to maintain usual daily routine (n=5) versus treatment (n=2) as the control group. three studies (buchannan et al., 2018; hudson et al., 2008 and webel et al., 2013) provided treatments of a cognitive behavioral nature, whereas the remaining four studies (phillips & skelton, 2001; mcdermott et al., 2017; sandoval et al., 2016 and dreher, 2003) provided alternative treatments such as acupuncture, exercise, splinting for lower extremities and decreasing caffeine consumption. three of the seven studies dreher, 2003; buchanan et al., 2018 and philip & skelton, 2001) screened for insomnia using validated measures such as the pittsburgh sleep quality index (psqi) and dsm-iv, while four studies (hudson et al., 2008; buchanan et al., 2018; mcdermott et al., 2017 and sandoval et al., 2016) included exclusion criteria that ranged from cognitive impairment, mental illness and sleep apnea. instruments used to measure insomnia varied dependent on how insomnia was defined and operationalized. for instance, majority of the studies (n=7) insomnia was represented as sleep quality and measured by psqi (sandoval et al., 2016; mcdermott et al., 2017; philips & skelton, 2001 and dreher, 2003). whereas in other studies (n=4), insomnia was measured as sleep activity/quantity and assessed by wrist actigraphy and/or sleep diaries (philip & skelton, 2001; husdon et al., 2008; buchanan et al., 208 and webel et al., 2013). each of the measures used are validated measures that are consistently used in insomnia research. defining insomnia three of the seven studies included a general definition of insomnia above and beyond the description of insomnia as measured in the study (buchanan et al., 2018; hudson et al., 2008; phillips & skelton, 2001). insomnia was defined as difficulty falling asleep, awakening during the night, early morning awakenings and reduced sleep time. of these three studies only one (phillips & skelton, 2001) included the occurrence of insomnia as 3 or more nights per week. none of the studies included the duration of insomnia experience. the remaining studies (dreher (2003); mcdermott et al., 2017; sandoval et al., 2016 and weber et al., 2013) conceptualized insomnia as per the instruments being ihtp, 1(1), 61-73, spring 2021 cc by-nc-nd 4.0 used to measure insomnia, which is discussed later in the paper. data collected relevant to hiv/aids status and insomnia all participants in the selected studies (n=7) were living with hiv. all studies (n=7) collected data in relation to hiv/aids; the data reflected: years since hiv/aids diagnosis, route of infection, cd4+ cell count, hiv viral load, undetectable viral load and whether or not on antiretroviral medications was prescribed / taken and duration. dreher (2003) was the only study to examine potential confounding variables (hiv related health status) and sleep quality and well-being. results indicated that in the experimental group, those decreasing their caffeine intake experienced a significant improvement in their hiv-related health status (physical health status scores, t=3.323, p=.002; mental health status scores, t= -3.646; p=.001) as opposed to the control group that showed no significant improvement. dreher (2003) also examined any drug changes and their effect on sleep quality and well-being and found no change. types of treatment for insomnia and components of treatment a variety of treatments for insomnia in plwh were examined in the selected studies. three studies (hudson et al., 2008; buchanan et al., 2018 and webel et al., 2013) offered treatments that were of a cognitive behavioural nature. of these, buchanan et al. (2018) was the only study to include all components of cognitive behavioral therapy (cbt), that is, sleep education, sleep restriction, stimulus control and circadian mechanisms. the treatment was four-weeks long and included both face-to-face and telephone sessions. both hudson et al. (2008) and webel et al. (2013) focused only on the component of sleep hygiene as part of the insomnia treatment, but did so in an unconventional way; specifically, they evaluated a 10-week sleep hygiene and behavioral modification strategy that focused on redesigning the individuals’ system of interpersonal environment and daily routines linked to the health behavior. in other words, the focus was on changing the environment more so than the focusing on personal efforts to change individual behaviours. hudson et al. (2008) on the other hand focused on a 1-week tailored sleep hygiene treatment in which issn 2563-9269 65 participants were first educated on the various sleep hygiene behaviors and then, they were able to choose two from the potential six sleep hygiene behaviors for 1-week. four of the seven studies included physical or alternative treatments for insomnia (phillips et al., 2001 and sandavol et al., 2016 and mcdermott et al., 2017; dreher, 2003). for example, a 16-week aerobic exercise program, acupuncture with two-sessions per week for five weeks, use of splinting for lower extremities for six-weeks and decreasing caffeine consumption for 30-days were the treatments provided to individuals in order to decrease their insomnia. outcomes insomnia was measured in different ways in the studies targeting plwh. sleep quantity was measured by the use of sleep diaries where sleep quantity was captured through total sleep time, sleep onset latency, wake after sleep onset and sleep efficiency (buchanan et al., 2018 and hudson et al., 2008). wrist actigraphy was also used to capture sleep quantity (webel et al., 2013 and husdon et al., 2008). when not reported in the article, the effect sizes were calculated as the standard difference in the means on the indicator for insomnia between treatment groups. the effect sizes were calculated in order to identify treatments that are most effective in managing insomnia in this population. the treatment with the largest effect size for sleep quantity (1.111.91) was the brief behavioral treatment based on the principles of cbt (buchanan et al., 2018). the systemchange treatment based on the principles of sleep hygiene, behavioral modifications and the sociological model resulted in medium effects sizes (0.40 – 0.50) (webel et al., 2013). lastly, the tailored sleep promotion intervention based on principles of sleep hygiene demonstrated small effect sizes (0.010.25) with the use of sleep diaries and medium effect sizes (0.02 to 0.5) on the circadian rhythm parameters (hudson et al., 2008). the treatment with the largest effect size noted for sleep quality was again the brief behavioral treatment (1.111.91) (buchanan et al., 2018), followed by the use of caffeine reduction (0.75) (dreher, 2003). both the systemchange and exercise as a treatment for insomnia also demonstrated medium effects on sleep quality ranging from 0.40-0.37. (webel et al., 2013 & ihtp, 1(1), 61-73, spring 2021 cc by-nc-nd 4.0 mcdermott et al., 2017). the remaining treatments for lower extremity splinting and tailored sleep promotion demonstrated small effect sizes ranging from 0.01 to 0.02 for sleep quality (hudson et al., 2008 & sandoval et al., 2016). effect sizes for sleep impairment were found to be large (1.11 to 1.91) in the brief behavioral treatment (buchanana et al., 2018) and small (0.1) in the systemchange treatment (webel et al., 2013). effect sizes for sleep disturbance were also noted to be medium (0.64) with the tailored sleep promotion treatment (hudson et al., 2008), yet small (0.05) with the systemchange treatment (webel et al., 2013). lastly, perceived severity of insomnia was only measured by buchanan et al. (2018) yet was demonstrated to have a large effect size with the brief behavioral treatment (1.11-1.91). discussion evaluation of pharmacological to nonpharmacological treatments for insomnia is widespread the general population but rather limited in plwh. this review identified seven studies that evaluated non-pharmacological treatments for insomnia within plwh. results identified the treatment that tended to have the largest effect sizes on sleep quality and sleep quantity (ranging from 1.11 to 1.91) as the brief behavioral treatment (buchanan et al., 2018) the brief behavioral treatment was comprised of 4 weekly sessions: two in person and two by telephone. components of the treatment consisted of sleep hygiene, sleep restriction (limiting the time in bed when not asleep), stimulus control (avoiding conditioned sleep wakefulness in the sleep setting) as well as circadian mechanisms (keeping stable sleep schedule). these components are based on the four principles to promote sleep that is; reduced time in bed, keeping the same wakeup time regardless of sleep quality, going to bed only when sleepy and getting out of bed at night when not sleeping (troxel et al., 2012). cbt-i has long been recommended as the first line of treatment for insomnia. the short-term effects of cbt-i are comparable to those of pharmacotherapy; cbt-i has also demonstrated efficacy in the long term (taylor & pruiksma, 2014). results of several systematic review demonstrates that the components of cbt-i with the strongest empirical support in the general population, are issn 2563-9269 66 stimulus control treatment (sct), sleep restriction treatment (srt), relaxation and cognitive therapy (morgenthaler et al., 2006; morin et al., 2006; van straten et al., 2018). as well, a study by epstein et al (2012), has demonstrated that sct, srt and multicomponent interventions (mci) are equally efficacious and produce sustainable treatment gains on sleep outcomes. in comparison, treatments that solely focused on sleep hygiene were considered inadequate having overall smaller effects than cbt-i (taylor & pruiksma, 2014). this was comparable to the findings reported by hudson et al., (2008); the tailored sleep promotion treatment comprised of a 30-40-minute session focused on an educational and behavioral set of sleep promoting behaviors based on the principles of sleep hygiene only. participants were asked to choose two of the six sleep hygiene principles to follow for a one-week period. results indicated that the intervention had small effect sizes for sleep quality (0.01) and a small to medium effect size for sleep quantity (0.02-0.5). dreher (2003) included a single component of sleep hygiene education focused on decreasing caffeine consumption over a 30-day period, while mcdermott et al (2017) provided a 16-week exercise program. each of these foci on the lifestyle and environmental factors related to sleep. the reduction of caffeine for 30 days resulted in an effect size of 0.75 for sleep quality, whereas the introduction of a 16-week exercise program resulted in an effect size of 0.37 for sleep quality. the number of sessions in a cbt-i have also been debated in the literature. previously cbt-i typically required 8-10 weekly sessions, but recently interventions of shorter duration that focus on behavioral principles have shown to be just as efficacious (buchanan et l., 2018 & sidani et al., 2019). thus, the ability to provide a shorter duration intervention without compromising the efficacy of the intervention has two implications; 1) it may be cost effective than longer session treatments and 2) may decrease the burden put on individuals to attend numerous sessions. the selected studies had weaknesses. all seven studies had small sample sizes; with three studies classified as pilot studies examining the feasibility and preliminary efficacy of the treatments. pilot studies do have value in that they help to address process measures, consent rate, rates of treatment flexibility, compliance, method of randomization, and outcome ihtp, 1(1), 61-73, spring 2021 cc by-nc-nd 4.0 measures (sim, 2019). pilot studies also provide value in that they may highlight processes that did not work and provide alternative suggestions for future research. buchanan et al., (2018) identified in their pilot study that a randomized wait-list design was an unsuccessful approach contributing to a high drop out rate. the author proposed future research should include an active control to retain participants. whereas, sandovoal et al. (2016) also noted high attrition rates, although did not provide a possible solution to address the issue in future research studies. identification of issues and possible solutions support future research studies with the best research process based on previous pilot studies. in addition, many may also report on the preliminary efficacy of the treatment. yet, effect sizes may be imprecise in small sample studies and therefore do not allow for a robust decision on a main trial (sim, 2019). in order to further progress, replication studies with larger sample sizes are necessary. varied definitions of insomnia both conceptually and operationally is also problematic. as was seen in this scoping review, three of the seven studies included a general definition of insomnia where there was variability. a more liberal definition of insomnia tended to be used more often. the liberal definition focuses on the presence of nocturnal insomnia symptoms (e.g., difficulties with sleep initiations or maintenance, nonrestorative sleep). a more conservative definition requires additional features such as associated daytime impairment of which none of the studies included in their general definition of insomnia. as well the frequency of occurrence and duration of insomnia was mostly lacking in the general definitions. the use of varied definitions may lead to drastically different findings and conclusions regarding the general prevalence of insomnia as well as overall study results (ohayon, 2002). therefore it is important to include a standardized definition that is based on the most recent dsm-5. the dsm-5 identifies insomnia as a predominant complaint of dissatisfaction with sleep quantity or quality, associated with one (or more) of the following symptoms: difficulty initiating sleep, difficulty maintaining sleep, characterized by frequent awakenings or problems returning to sleep after awakenings, early-morning awakening with inability to return to sleep, sleep difficulty occurs for at least 3 nights per week and is present for at least 3 months (american psychiatric association, 2013). issn 2563-9269 67 additionally, there is a plethora of information relating to the experiences, potential determinants and correlates of insomnia and plwh, although research examining the effects of such variables on insomnia in plwh is minimal as well as inconsistent (reid & dwyer, 2005). hiv-related clinical variables such as cd4+ cell counts and viral load may be associated with insomnia, but some studies have not supported this association (taibi, 2012). a study by jean-louis et al. (2012), noted the duration of hiv infection, cd4+ cell count, viral load, lipoatrophy and hiv therapy type were not significantly associated with insomnia symptoms. as well, a systematic review based on 29 studies identified that the role of immune dysregulation, virus progression and adverse drug effects contributing to insomnia as unclear, whereas the antiretroviral treatment efavirenze was found to be a significant risk factor to insomnia (reid & dwyer, 2005). although research has also shown that sleep disturbing effects of efavirenze appears to decrease with time (e.g., 35% report sleep disturbance after 4-weeks of therapy, 7% report sleep problems after 24-weeks of therapy and none report sleep problems at 48-weeks of therapy) (low et al. 2014). the number of published studies that systematically evaluate the risk of insomnia associated with antiretroviral drugs is limited. of the studies examining insomnia and plwh, for many the effect of antiretroviral therapy was either not considered or participants receiving antiretroviral treatment were excluded (reid & dwyer, 2005). buchanan et al (2018) was the only study in this review to exclude individuals who were currently taking efavirenz for the sole purpose that it was known to cause sleep disturbance. in this scoping review, all studies collected data relevant to individual’s hiv/aids status such as: years since hiv/aids diagnosis, cd4+ cell count, hiv viral load, undetectable viral load and whether or not on antiretroviral medications and duration. the data collected were used for descriptive purposes. dreher (2003) was the only study that examined potential confounding variables (hiv related health status) and sleep quality, although no significant effects were found. behavioral and cognitive factors such as excessive worrying during nighttime awakenings and extended time in bed have also been found to contribute to insomnia in the general population but research with plwh is typically lacking in this area as well (taibi, 2012). due to the limited research and inconsistencies in physiological, behavioral and ihtp, 1(1), 61-73, spring 2021 cc by-nc-nd 4.0 cognitive factors that may play a role in plwh and insomnia further research is needed in order to better understand factors relevant to hiv status that may have an impact on insomnia within plwh population. conclusion in conclusion, there are very limited number of studies examining insomnia treatment for plwh. of the treatments provided, those stemming from a cognitive behavioral treatment tended to have stronger positive outcomes in relation to one’s sleep quality and quantity versus other alternative treatments. future research should focus on the development of a cbt-i for plwh with a focus on the particular determinants of insomnia in plwh. references american psychiatric association. (2013). diagnostic and statistical manual of mental disorders: dsm-5: author. arksey, h. and o’malley, l. (2005). scoping studies: towards a methodological framework. international journal of social research methodology, 8(1), 19-32. https://doi.org/ 10.1080/1364557032000119616. buchanan, d. t., mccurry, s. m., eilers, k., applin, s., williams, e. t., & voss, j. g. (2018). brief behavioral treatment for insomnia in persons living with hiv. behavioral sleep medicine, 16(3), 244-258. https://doi.org/10.1080/15402002.2016.11 88392. bhaskar, s., hemavathy, d., prasad, s. (2016). prevalence of chronic insomnia in adult patients and its correlation with medical conditions. journal of family medicine primary care, 5(4), 780-784. https://doi.org/10.4103/2249-4863.201153. chung, kf., lee, ct., yeung, wf., chan, ms., chung, ewy. & lin, wl. (2018). sleep hygiene education as a treatment of insomnia: a systematic review and meta-analysis. family practice, 35(4), 365-375. https://doi.org/10.1093/fampra/cmx122. dreher hm (2003). the effect of caffeine reduction on sleep quality and well-being in persons with hiv. journal of psychosomatic research, 54(3),191-8. https://doi.org/10.1016/s00223999(02)00472-5. ihtp, 1(1), 61-73, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 68 epstein d., sidani, s., bootzin, r., belyea, m. (2012). dismantling multicomponent behavioral treatment for insomnia in older adults: a randomized control trial. sleep, 35(6), 797805. https://doi.org/10.5665/sleep.1878. garland, s., rowe, h., repa, l., fowler, k., rhou, e., grandner, m. (2018). a decade’s difference: 10-year change in insomnia symptom prevalence in canada depends on sociodemographics and health status. sleep health, 4(2), 160-165. https://doi.org/10.1016/j.sleh.2018.01.003. geiger-brown, j., rogers, v., liu, w., ludeman, e., downton, k., diaz-abad, m. (2015). cognitive behavioral therapy in persons with comorbid insomnia: a meta-analysis. sleep medicine reviews, 23, 54-67. https://doi.org/10.1016/j.smrv.2014.11.007 . gong, h., ni, cx., liu, yz., zhang, wj., lian, yj., peng, w. & jiang, cl. (2016). mindefulness meditation for insomnia: a meta-analysis of randomized controlled trials. journal of psychosomatic research, 89, 1-6. https://doi.org/10.1016/j.jpsychores.2016.0 7.016. hudson, a. l., portillo, c. j., & lee, k. a. (2008). sleep disturbances in women with hiv or aids: efficacy of a tailored sleep promotion intervention. nursing research, 57(5), 360366. https://doi.org/10.1097/01.nnr.000031350 1.84604.2c. jabbari, f., dadaghzadeh, f., khalili, h., abbasian, l. (2015). associated factors of sleep quality in hiv-positive individuals. future virology, 10(2), 98-96. https://doi.org/10.2217/fvl.14.107. jean-louis g., weber, k., aouizerat, b., levine, a., maki, p., liu, c., anastos, k., milam, j., althoff, k., wilson, t. (2012). insomnia symptoms and hiv infection among participants in the womens interagency hiv study. sleep, 35(1), 131-137. https://doi.org/10.5665/sleep.1602. johnson, j., rash, j., campbell, t., savard, j., gehrman, p., perlis, m., carlson, l., garland, s. (2016). a systematic review and metaanalysis of randomized controlled trials of cognitive behavior therapy for insomnia (cbt-i) in cancer survivors. sleep medicine, 27, 20-28. https://doi.org/10.1016/j.smrv.2015.07.001 . low, y., goforth, h., preud’homme, x., edinger, j., krystal, a. (2014). insomnia in hiv-infected patients: pathophysiological implication. aids, 16(1), 3-13. mcdermott, a., zaporojan, l., mcnamara, p., doherty, c. p., redmond, j., forde, c., … bergin, c. (2017). the effects of a 16-week aerobic exercise programme on cognitive function in people living with hiv. aids care, 29(6), 667–674. https://doi.org/10.1080/09540121.2016.12 63723. miranda, j., sidani, s., fredericks, s., fox, m. (2017). sleep and cardiovascular effects of behavorial therapies for insomnia. british journal of cardiac nursing, 12(10), 488-495. https://doi.org/10.12968/bjca.2017.12.10.4 88. medic, g., wille, m., hemels, m. (2017). short and long-term health consequences of sleep disruption. nature and science of sleep, 9, 151-161. https://doi.org/10.2147/nss.s134864. morgenthaler, t., kramer, m., alessi, c., friedman, l., boehlecke, b., brown, t., … swick, t. (2006). practice parameters for the psychological and behavioral treatment of insomnia: an update. an american academy of sleep medicine report. sleep, 29(11),1415-1419. morin, c., beaulieu-bonneau, s., cheung, j. (2019). treatment of insomnia. in: savard, j. & ouellet mc (eds.), handbook of sleep disorders (pp. 27-50). elsevier. https://doi.org/10.1016/c22016-0-03652-5. morin , c.m. , bootzin , r.r. , buysse , d.j. , edinger , j.d. , espie , c.a. , & lichstein , k.l. (2006). psychological and behavioral treatment of insomnia: update of the recent evidence (1998 – 2004). sleep, 29(11),1398-1414. https://doi.org/10.1093/sleep/29.11.1398. morin, c., leblanc, m., bélanger, l., ivers, h., mérette, c., savard, j. (2011). prevalence of insomnia and its treatment in canada. the canadian journal of psychiatry, 56(9), 540548. https://doi.org/10.1177/070674371105600 905. ihtp, 1(1), 61-73, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 69 ohayon, m. (2002). epidemiology of insomnia: what we know and what we still need to learn. sleep medicine review, 6(2), 97-111. https://doi.org/10.1053/smrv.2002.0186. phillips, k. d., & skelton, w. d. (2001). effects of individualized acupuncture on sleep quality in hiv disease. janac: journal of the association of nurses in aids care, 12(1), 27-39. https://doi.org/10.1016/s10553290(06)60168-4. qaseem a, kansagara d, forciea ma, cooke, m. denberg, t. (2016) management of chronic insomnia disorder in adults: a clinical practice guideline from the american college of physicians. annals internal medicine, 165,125–33. https://doi.org/10.7326/m15-2175. rogers, b., lee, j., bainter, s., bedoya, a., pinkston, m., safren, s. (2018). a multilevel examination of sleep, depression, and quality of life in people living with hiv/aids. journal of health psychology, sep25(10-11), 1-11. https://doi.org/10.1177/135910531876563 2. sandoval r, roddey t, giordano tp, mitchell k, kelley c. (2016). randomized trial of lower extremity splinting to manage neuropathic pain and sleep disturbances in people living with hiv/aids. journal of the international association of providers of aids care, 15(3), 240-7. https://doi.org/10.1177/232595741351111 2. sidani, s., epstein, d.r., fox, m. (2019). comparing the effects of single and multiple component therapies for insomnia on sleep outcomes. worldviews on evidencebased nursing, 16 (3), 195-203. https://doi.org/10.1111/wvn.12367. sim, j. (2019). should treatment effects be estimated in pilot and feasibility studies? pilot and feasibility studies, 5(107). https://doi.org/10.1186/s40814-019-04937. straten, a., zweerde, t., kleiboer, a., cuijpers, p., morin, c., lancee, j. (2017). cognitive and behavioral therapies in the treatment of insomnia: a meta-analysis. sleep medicine reviews, 38, 3-16. https://doi.org/10.1016/j.smrv.2017.02.001 . taibi, d. (2013). sleep disturbances in persons living with hiv. journal of the association of nurses in aids care, 24(1), s72-s85. https://doi.org/10.1016/j.jana.2012.10.006. taylor, d. & pruiksma, k. (2014). cognitive and behavioural therapy for insomnia (cbt-i) in psychiatric populations: a systematic review. international review of psychiatry, 26(2), 205-213. https://doi.org/10.3109/09540261.2014.90 2808. trauer, j., qian, m., doyle, j., rajaratnam, s., cunnignton, d. (2015). cognitive behavioral therapy for chronic insomnia: a systematic review and meta-analysis. annals of internal medicine, 163(3), 191-204. https://doi.org/10.7326/m14-2841. troxel, w.m., germain a. & buysse, d.j. (2012). clinical management of insomnia with brief behavioral treatment (bbti). behavioral sleep medicine, 10(4), 266-279. https://doi.org/10.1080/15402002.2011.60 7200. van stratten, a., van der zweerde, t., kleiboer, a., cuijpers, p., morin, c. & lancee, j. (2018). cognitive and behavioral therapies in the treatment of insomnia: a meta-analysis. sleep medicine reviews, 38, 3-16. https://doi.org/10.1016/j.smrv.2017.02.001 . webel, a., moore, s., hanson, j., patel, s., schmotzer, b., salata, r. (2013). improving sleep hygiene behavior in adults living with hiv/aids: a randomized control pilot study of the systemchange hiv intervention. applied nursing research, 26(2), 85-91. https://doi.org/10.1016/j.apnr.2012.10.002 . wu, j., appleman, e., salazar, r., ong, j. (2015). cognitive behavioral therapy for insomnia comorbid with psychiatric and medical conditions a meta-analysis. journal of the american medical association internal medicine, 175(9), 1461-1472. https://doi.org/10.1001/jamainternmed.20 15.3006. wu, j., lu, c., guo, l., li, p. (2015). self-reported sleep disturbances in hiv-infected people: a meta-analysis of prevalence and moderators. sleep medicine, 16(8), 901907. ihtp, 1(1), 61-73, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 70 https://doi.org/10.1016/j.sleep.2015.03.02 7. zielinski, mckenna & mccarley (2016). functions and mechanisms of sleep, aims neuroscience, 3(1), 67-104. https://doi.org/10.3934/neuroscience.2016 .1.67. ihtp, 1(1), 61-73, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 71 figure 1: article flow diagram articles identified through database searches (n=899) articles identified as duplicates (n=398) articles after duplicates removed, title and abstract reviewed for eligibility (n= 501) records excluded (n= 494) rationale for exclusion: 1. population was plwh but no focus on insomnia (n= 279) 2. articles described insomnia in plwh but did not involve treatment (n= 126) 3. pharmacological treatment addressed for insomnia in plwh (n=5) 4. included insomnia but with no focus on plwh (n=22) 5. main focus was not on insomnia, plwh or treatment (n= 62) full-text articles reviewed for eligibility (n= 7) studies included in the scoping review (n = 7) ihtp, 1(1), 61-73, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 72 table 1: summary of study characteristics used in the scoping review source year country number of subjects design sleep measures treatment types comparison treatment buchannan et al. [26] 2018 u.s.a n=12 one group quasiexperimental with pretest/posttest measures psqi sleep diary promis isi brief behavioral treatment for insomnia: 4 weekly sessions: two in person (sessions 1,3) and two by telephone (sessions 2,4). focus is on behavioral components of insomnia treatment. n/a dreher [29] 2003 u.s.a, canada, brasil n=88 two-group randomized control study psqi instructed to withdraw from caffeine using a gradual withdraw from caffeine protocol and then asked to avoid all caffeine sources for 30 days. instructed to maintain their ordinary and usual daily caffeine consumption without variation. hudson et al. [27] 2008 u.s.a n=30 pretest/posttest pre-experimental design psqi wrist actigraphy sleep diary gsds educational and behavioral set of sleeppromoting behaviors based on principles of sleep hygiene. a 30-40min individual session in which six primary principles of sleep hygiene were reviewed. participants contracted to try two of the six sleep hygiene behaviors for 1week. n/a ihtp, 1(1), 61-73, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 73 mcdermott et al. [31] 2017 ireland n=11 two-group randomized control study psqi 16-week aerobic exercise program no intervention received. participants were advised to continue their normal daily routine. phillips and skelton [28] 2001 u.s.a n=21 pretest/posttest pre-experimental design psqi wrist actigraph csqi acupuncture treatment provided 2 evenings per week for 5 weeks for a total of 10 sessions. each session lasting 30 to 45 mins. n/a sandoval et al. [30] 2016 u.s.a n=46 two-group randomized control trial psqi night time wearing of bilateral lower extremity splints for 6-weeks use of parallel splint liner for 6weeks webel et al. [22] 2013 u.s.a n=40 two-group randomized control study wrist actigraph promis systemchange-hiv intervention that included 10-weekly group sessions on different topics of hiv management. control group received a copy of the hiv symptom management strategies: a manual for people living with hiv/aids issn 2563-9269 214 perspectives of service agencies on factors influencing immigrants’ mental health in alberta, canada dominic a. alaazi1, salima meherali2, esperanza diaz3, kathleen hegadoren2, neelam punjani2, bukola salami2 1school of public health, university of alberta, edmonton, alberta, canada; 2faculty of nursing, university of alberta, edmonton, alberta, canada; 3department of global public health and primary care, university of bergen, bergen, norway : d.a. alaazi (alaazi@ualberta.ca) abstract newcomers to canada experience resettlement challenges that affect their mental well-being. guided by an intersectionality theoretical framework, we explored the perspectives of immigrant service agencies on factors influencing immigrants’ mental health in alberta, canada. data were collected by means of qualitative interviews and focus groups with immigrant service providers. our data analysis identified seven themes – precarious immigration status, employment discrimination, social isolation, socioeconomic pressures, sociocultural stress, gender and age-related vulnerabilities, and lack of appropriate mental health supports – reflecting the major intersecting determinants of immigrants’ mental health. we propose policy interventions for addressing the mental health vulnerabilities of immigrants. keywords immigrants; intersectionality theory; mental health; resettlement challenges; well-being funding source this work received funding from policywise for children and families (grant #: 15sm). background cross-border migration of people has increased globally over the last three decades. in 2020, an estimated 281 million people lived outside their country of origin, 60 million of whom emigrated in the last 10 years (un department of economic and social affairs, 2020). although most cross-border migrants are found in the global south, a significant proportion has settled in developed countries, including the united states, united kingdom, australia, and canada. data from canada’s 2016 population census indicate that the country was home to over 7.5 million immigrants, constituting approximately 22% of the country’s total population (statistics canada, 2018). an estimated 207,790 immigrants resided in alberta in 2016 (statistics canada, 2016). alberta’s strong economy, thriving ethnoracial communities, and ihtp, 1(2), 214-225, 2021 cc by-nc-nd 4.0 strong public service sectors have continued to promote the province as a favorable immigrant destination in canada. provincial policies, including the alberta immigrant nominee program (ainp), have also been deliberately redesigned to attract immigrants as a stopgap remedy for labour shortages in the province. as these immigrants become a vital part of albertan society, it is important to understand their settlement experiences. research across the globe has suggested newcomers face considerable resettlement challenges in destination countries, some of which can have detrimental impacts on their physical and mental well-being. immigrants usually arrive in destination countries with high hopes and issn 2563-9269 215 expectations. however, they can feel frustrated, disappointed, and depressed when their initial hopes and expectations are not realized (chadwick & collins, 2015; menezes, georgiades, & boyle, 2011; shishehgar, gholizadeh, digiacomo, & davidson, 2015; srirangson, thavorn, moon, & noh, 2013; stafford, newbold, & ross, 2011). the discrepancy between pre-emigration expectations and the realities of resettlement can have serious health implications. compared to their native-born counterparts, newcomers to the united states, united kingdom, australia, and canada usually arrive with better health status, a phenomenon known as the ‘healthy immigrant effect’ (islam, 2013; kennedy, kidd, mcdonald, & biddle, 2015; ng & omariba, 2010; rechel, mladovsky, ingleby, mackenbach, & mckee, 2013; robert & gilkinson, 2012; vang, sigouin, flenon, & gagnon, 2015). several immigration policies and practices, including rigorous medical screening and deliberate selection of healthier, younger, and more educated applicants, give rise to the healthy immigrant effect (kennedy et al., 2015; ng, 2011; vang et al., 2015). canada and australia, for example, attract young, educated, and skilled immigrants through a points-based system that explicitly considers age, educational attainment, and language proficiency as entry requirements. similarly, the united states offers temporary work visas to highly educated and skilled individuals with superior health attributes (kennedy et al., 2015). however, despite these initial health advantages, the physical and mental health of immigrants tends to deteriorate and even decline to native-born levels after some time in destination countries (islam, 2013; kirmayer et al., 2011; ng & omariba, 2010; straiton, grant, winefield, & taylor, 2014). research on health transition among canadian immigrants suggests that recent immigrants have fewer depressive symptoms and lower rates of depression and alcohol dependence than those who have been in canada for a decade or more (ali, 2002; islam, 2013). research on the mental health and general wellbeing of newcomers is limited in several of the major immigrant-destination countries. the few available studies on immigrants’ mental health relied on quantitative analysis of a limited number of measurable variables (islam & oremus, 2014; nangia, 2013; ng & omariba, 2010; rivera, casal, & currais, 2016; robert & gilkinson, 2012; statistics canada, ihtp, 1(2), 214-225, 2021 cc by-nc-nd 4.0 2013), which does not sufficiently account for the contextual factors influencing the mental health of this demographic. the rapid increase in immigrant populations in destination countries makes a strong case for qualitative insights that can help inform mental health supports for immigrants. in the canadian province of alberta, a wide gap in mainstream mental health services exists for newcomers (salami, salma, & hegadoren, 2019). community service agencies are currently involved in bridging the gap in mental health services and supports for immigrant in the province. however, research in the province has yet to explore the perspectives of these service providers regarding the determinants of immigrant mental health. this study was therefore designed to explore service providers’ understanding of the factors influencing immigrant mental health in this canadian province. we sought specifically to address the question, “what factors do immigrant service agencies perceive as the key determinants of the mental health of immigrants in alberta?” theoretical framework an intersectionality theoretical perspective guided the conceptualization and conduct of this research (crenshaw, 1989). intersectionality theory addresses the predisposition of certain population groups to multiple and often concurrent social and economic disadvantages based on race, gender, and class (collins, 2000). in the context of immigration, the theory highlights how the interaction of race, gender, and social class can create socioeconomic and health disadvantages for immigrant groups. viruell-fuentes, miranda, and abdulrahim (2012) suggest intersectionality theory as an alternative analytical framework that shifts explanations of health inequities from individual-level factors to structurallevel examinations of the role of power, race, class, gender, and immigration status. although the primary focus of crenshaw’s original work was to explain the social disadvantages of black women in the united states, intersectionality theory has since evolved into a potent analytical lens through which the health vulnerabilities of marginalized groups can be understood. in this research, we adopted an intersectionality theoretical gaze to reflect the similarities in social position between american black women and canadian immigrants. issn 2563-9269 216 first, similar to american black women, the majority of immigrants in alberta and across canada are peoples of colour, whose experiences have been shaped by their racial identities (statistics canada, 2013). second, the minority status of canadian immigrants places them at socioeconomic disadvantages in a manner similar to those experienced by the black women who formed the subjects of crenshaw’s theorization in the 1980s. in these regards, intersectionality theory offers an analytical lens for identifying the structural determinants of the mental health of immigrants in the canadian context. methods participants and data collection our research design relied on a qualitative descriptive methodology involving interviews and focus groups (sandelowski, 2000). after obtaining ethics approval from the university of alberta research ethics board, we invited individuals from immigrant service agencies to participate in the study. we identified potential participants by contacting known immigrant service agencies across the province. our targeted participants were frontline workers who worked directly with different categories of immigrants, including refugees, economic immigrants, and temporary foreign workers, to address their social and mental health challenges in the province. their direct and regular contact with immigrant populations meant that these individuals were knowledgeable enough to speak to the factors affecting immigrants’ mental health. at the initial contact, we gave potential participants the option of participating in an individual interview or a focus group. overall, we conducted 6 face-to-face individual interviews and six focus groups (of 47 participants) over the period september to december 2016. the 53 participants represented nine different immigrant service agencies across alberta, and included both mental health practitioners and social service providers. there was no data redundancy because some of the participants, despite working at the same agency, had different professional expertise and played very different roles in supporting the mental health of immigrants. for instance, in one agency, we recruited three participants who were each specialized in provision of mental health supports to different ihtp, 1(2), 214-225, 2021 cc by-nc-nd 4.0 categories of immigrants: temporary foreign workers, economic migrants, and refugees. these immigrant groups had different mental health needs that required supports from professionals with different expertise. given their role in the study as key informants rather than immigrants with lived experiences of immigration, we made a decision to restrict collection of participant demographics to only age, gender, and country of origin. all interviews and focus groups were semistructured, audio-recorded, and completed by a member of the research team. participants were, for example, asked, “what are the key mental health concerns of your clients?”; “what factors underlie these concerns”, etc. on average, the individual interviews lasted approximately 45 minutes (ranging from 30 to 60 minutes), while the focus groups lasted approximately 2 hours. for their convenience, all interviews and focus groups occurred in the participants’ office premises. each participant read the informed consent documents and consented to participate. data analysis all interviews and focus groups were transcribed verbatim and analyzed thematically using nvivo 11, a qualitative data management software. intersectionality theory guided the process of data coding, interpretation, and identification of themes, wherein we paid attention to how race, gender, culture, and social status intersect to create mental health vulnerabilities among immigrants. the data coding process was inductive, and followed braun and clark’s (2006) thematic analytic process of reading, rereading, and sorting data into themes. in this regard, two members of the research team independently read the interview transcripts to establish familiarity with the data. the two subsequently met to discuss the data, following which a codebook of preliminary nodes was developed. disagreements between the two readers were resolved by consensus. in the final step, one member of the team coded the transcripts using nvivo 11, the data management functions of which supports data sorting into nodes and subsequently into themes. we exercised reflexivity throughout the entire process of data collection and analysis (lincoln & guba, 1985; weis & fine, 2000), by: (a) maintaining a reflexive log book in which we recorded our emerging issn 2563-9269 217 understanding of the data; and (b) reflecting on and documenting how our own social location as researchers, immigrants, and racial minorities influenced our understanding of the research context and emerging themes. we attained analytical u by sharing the preliminary findings with the participants. their feedback strengthened the analytic process and the accuracy of our findings. results the participants were themselves predominantly immigrant (n = 49) and female (n = 47). all participants were more than 18 years in age. our thematic analysis of the data resulted in the identification of several intersecting determinants of immigrants’ mental health and well-being in alberta. we categorized these factors into seven main themes, namely precarious immigration status, employment discrimination, social isolation, socioeconomic pressures, sociocultural stress, gender and age-related vulnerabilities, and lack of appropriate mental health supports. precarious immigration status although our participants suggested that most immigrants faced difficulties in settling and adjusting to life in canada, they identified temporary foreign workers, refugee claimants, and undocumented migrants to be the most disadvantaged in the resettlement process. as such, individuals belonging to these immigrant categories were reported as being more likely than economic migrants to present at service agencies with mental health issues, including anxiety, emotional problems, and depression. our participants attributed the mental health vulnerability of these migrants to their precarious immigration status. a participant explained this peculiar vulnerability: for temporary workers, there is an added element of instability because of not knowing how long they are going to be here – [individual interview 03]. indeed, several of our participants reported encountering temporary foreign workers who were either anxious or psychologically stressed about their precarious immigration status, which included the expiration of work permits and uncertainties surrounding (non)renewal of resident permits. the resulting mental stress was observed to be even more ihtp, 1(2), 214-225, 2021 cc by-nc-nd 4.0 intense for undocumented migrants who, in addition to lacking access to mainstream services (e.g. healthcare), lived in fear of deportation and possibly social and economic displacement in their country of origin. an interview participant explained the disconnection of undocumented migrants and their families from services: undocumented workers… they become undocumented and then they can’t even access alberta health care… if they have a work permit but then when they lose their work permit, so that’s like in-between status, even though the children are canadian citizen by birth, they don’t get health care service. – [individual interview 05]. refugee claimants reportedly also lived in fear of losing their claim to refugee status, and as such experienced the anxiety associated with fear of deportation. according to participants, many of these claimants had come from countries where they experienced or witnessed war-related atrocities, including rape and extrajudicial killings. our participants described the thought of deportation as one that traumatized refugee claimants. a participant explained: being a refugee claimant on its own is a very challenging process. so, having been persecuted, having been discriminated against back home, and coming here and not being able to even be successful in your claim adds on to the already fragile mental health. – [individual interview 04]. in a nutshell, participants identified precarious immigration status as a major source of stress that added to the psychological and mental burden of temporary foreign workers and refugee claimants, some of whom reportedly had past experiences of posttraumatic stress disorders and depression caused by violence, religious persecutions, and poverty. employment discrimination according to participants, a large number of immigrants in the province were either unemployed or working in menial part-time jobs that were not commensurate with their educational qualifications and previous work experiences. they noted that, despite having comparable and in some instances better educational and professional qualifications than non-immigrants, immigrants struggled to find issn 2563-9269 218 suitable work. a large number of immigrants across the province were said to be working in low-skilled and low-wage jobs. they observed that even highly skilled immigrant professionals had difficulty finding suitable work, although it was the same credentials that qualified them for admission to canada. the participants blamed racial discrimination, an overemphasis on canadian work experience, and outright disregard for foreign-acquired qualifications for the inability of immigrants to find suitable employment. consequently, a significant proportion of our participants’ clients were reported to be individuals who also experienced poverty, material deprivation, and eventually psychosocial stress. one participant cited an example of a highly educated immigrant client who was distressed about having to accept work in a low-wage service industry: there was an indian couple. the husband was an engineer, and his wife was into government jobs, and she had two or three phds. . . and when she came here she had to undergo all this stressful, you know, processes. and she was . . . cry[ing], “i am going to have to go to jugo juice and say ‘may i help you?” she got a job, . . . an entry-level job, right? [back home], she used to work at the government. . . the elite type of white-collar job . . . she was just cry[ing], “what am i doing here and why am i here? i just want to go back.” . . . she was so humiliated, so insulted, like, “what have i done to myself?” – [focus group 1 participant]. many participants stated that immigrants who had not fulfilled their dreams of improving their economic circumstances in canada often suffered from depression, psychosomatic problems, marital conflicts, alcohol abuse, and suicide ideation. the relationship between minority status, employment discrimination, poverty, and psychosocial stress exemplifies how race and social class intersect to influence the mental health of immigrants in the province. social isolation although our participants considered community belonging, social capital, and informal support systems as critical mental health resources that can help cope with settlement challenges, they indicated that most of their immigrant clients lacked these resources. instead, they experienced social isolation, loneliness, and disconnection from community. ihtp, 1(2), 214-225, 2021 cc by-nc-nd 4.0 according to participants, lack of community belonging and social supports often intersected with other resettlement stressors, such as unemployment, poverty, and poor language skills to create mental health stressors for immigrants. the participants therefore identified these intersecting factors as having detrimental impacts on the mental health of immigrants, including experiences of emotional problems and depression. a participant noted: if a new immigrant who is coming here and does not have any family or friends, [they become isolated]. if they are connected to a community from their ethnicity and they feel a sense of belonging, they tend to [avoid] the isolation. . . the family and community structure is not available to them over here . . . so, i think that sense of belonging is really important, very important for their mental health. – [focus group 2 participant]. a focus group participant went further to identify social isolation and depression as a typical precursor for suicides and drug addiction among immigrant groups. she noted: i have five to six people that, you know, committed suicide because nobody is there to help them…others just go for addiction of alcohol – [focus group 1 participant]. socioeconomic pressures per the participants’ observation, the resettlement process required attaining a balance between family life and work, an adjustment reported to be physically and mentally stressful to immigrant women, especially those with no previous experience of labour force participation in their home countries. participants revealed that the traditionally defined roles of some immigrant women were gender-specific and limited mostly to the domestic arena, while their husbands worked as income earners. however, upon arriving in canada, the majority of these women are forced by economic pressures to work as income earners, thereby introducing additional and unanticipated responsibilities that added to the physical and mental stress of immigrant women. a focus group participant revealed the impact of socioeconomic pressures on immigrant women’s mental health: issn 2563-9269 219 so back home, in our countries, most of the women are not really working; [they] just take care of the house. but then there’s a double responsibility over here, you have to work, and you have to create a balance with your children and in the house. so, all those pressures also kind of lead to mental illness and then it increases the stress. – [focus group 6 participant]. in several instances, as noted by our participants, immigrant women were not only balancing family and a single job but family and multiple low-wage jobs, which substantially reduced their ability to perform their traditional roles as mothers, wives, and homemakers. the weight of the resulting stress, according to participants, was often compounded by the absence of extended family supports, particularly in the area of parenting. sociocultural stress our participants also identified sociocultural stress as a key determinant of the mental health of immigrants in alberta. upon settling in canada, immigrants are typically exposed to value systems and norms of behaviour that deviate substantially from those held in their home countries. accordingly, several of our participants observed that western sociocultural influences have dramatically transformed power and gender relations in immigrant families, leading, in some instances, to conflicts, family destabilization, and mental health problems. a participant explained the cultural basis of parent-child conflicts in immigrant families: i have heard clients say, “i don’t know how to deal with my kids. . . i don't know what’s going on with my kids,” and there has been a lot of conflicts. [there is an] imbalance that they are seeking help for. – [individual interview 06]. according to several of our participants, immigrant parents generally believed that exposure to western cultures and ways of living has severely affected their ability to train their children. in particular, enforcement of child rights in the canadian context has been observed to curtail the ability of immigrant parents to discipline children. as such, children of immigrants were often said to make lifestyle choices that were inconsistent with parental expectations. this, our participants believed, has become a source ihtp, 1(2), 214-225, 2021 cc by-nc-nd 4.0 of family conflict, with adverse mental health implications for both parents and children. according to participants, sociocultural pressures have also exacerbated intimate-partner violence and led to increasing rates of divorce among immigrant families in the province. they suggested that the new social environment often produced irritants and tensions, some of which included changes in traditional gender relations, low socioeconomic status, unfulfilled dreams, and challenges with balancing work and family life. a participant identified intimate-partner violence as an outcome of these sociocultural stressors: many young women [are] exposed to or experience family violence from their husbands or partners, and it really causes mental health issues because, first of all, they are far away from their family, from their friends; there is no one to talk to or seek help from; they are not aware even of the services provided for women here in canada. – [focus group 3 participant]. participants also pointed to the growing number of single-parent households in the immigrant communities as a direct outcome of the multiple sociocultural stressors that they encountered upon resettlement. thus, overall, immigrants in alberta were reported as having difficulties in adjusting to their new sociocultural conditions, some of which can have adverse impacts on their mental health. here, cultural incongruency, gender, and minority status (e.g., isolation) intersect to exacerbate the experience of physical and mental stress among immigrant women. gender and age-related vulnerabilities participants identified immigrant women and youth as being particularly vulnerable to the mental health impacts of the resettlement process. from their experience working with immigrant clients, immigrant women were more likely to have limited language skills, be disconnected from community life, and experience loneliness than their male counterparts. coincidentally, more of their clients seeking help to deal with issues of depression and emotional problems were immigrant women. a focus group participant explained the gendered nature of mental health vulnerabilities among immigrant groups: issn 2563-9269 220 the loss of social networks can be a huge factor for women, even more so than for men if they are not working. . . you can at least forge some networks at work, right? if you don’t have access to those networks because you are staying home—and again, language barriers come in there as well, sometimes social barriers too—especially the husband either enforces staying at home for the wife, for example. so yeah, i would say the women are far more at risk of loneliness. – [focus group 3 participant]. immigrant youth also struggled with gaining social acceptance from their non-immigrant peers. our participants observed that youth from immigrant backgrounds tended to be excluded from play activities, and thus were more likely to face loneliness in school settings. according to participants, in their desperation to gain social acceptance, immigrant youths often turned to street communities, including those involved in illicit drug and gang activities. the consequences of such involvement were observed to include drug use and long-term mental health problems. a participant explained the relationship between social isolation and adverse social outcomes for immigrant youths: for the teenagers it’s. . . wanting to fit in, being accepted by the marginalized canadian kids, who are the kids who don’t have stable homes, are on drugs, you know. they are the ones who will accept the immigrant kids first, and so that’s what builds the view of the immigrant kids, what is normal in canadian society, but it is not. and then they tell their parents all canadian kids are allowed to go out till 2 o’clock. . . i certainly won’t let my kid do that, but they have never seen a healthy canadian family. – [individual interview 03]. these narratives highlight the peculiar nature of mental health vulnerability among immigrant women and youth. more importantly, they also illustrate the role of race as a mental health determinant among immigrant groups, in particular the lack of social acceptance and isolation imposed by their minority status in canada. lack of appropriate mental health supports despite the numerous mental health stressors confronting immigrants, the province was noted as having inadequate mental health supports for ihtp, 1(2), 214-225, 2021 cc by-nc-nd 4.0 immigrant families. culturally appropriate and clientcentered mental health supports were reportedly too few in mainstream service provision. participants noted that the stigmatization of mental health conditions in the immigrant communities required that serious attention be paid to issues of privacy and confidentiality when immigrants present at healthcare facilities with mental illness. our participants, however, observed a tendency among healthcare workers to handle the mental health issues of immigrants with some degree of levity, which served to discourage their utilization of available mental health supports. an interview participant explained: if somebody with trauma…go to the emergency room because they have these terrible thoughts, what happens? they get put in a little room which has very questionable privacy because it might be just with the curtains around. and then somebody asks them very private questions…let’s say it’s a woman from a camp who was raped. and now she has memories coming. is she going to say that? no, she is not…she might tell them what symptoms she has, and she is going to be diagnosed with schizophrenia because then it looks like she has hallucinations, while it is actually memories. so, she gets medication, which is not helping because she doesn’t have schizophrenia, she has ptsd. so, after this experience, she is not going to go back, and she is going to tell her friends don’t go there, [it] makes you worse…they get traumatized, re-traumatized in the process. – [individual interview 04]. our participants suggested that the lack of appropriate mental health supports, and treatments has resulted in several instances of misdiagnoses and mishandling of mental health conditions affecting immigrant groups in the province, which served to further disconnect immigrants from mainstream services. discussion in this study, we drew upon intersectionality theory to explore service providers’ perspectives on the determinants of immigrants’ mental health in alberta, canada. the identified determinants possess structural characteristics, and thus require structurallevel remedies. they also intersect to produce complex effects on the mental health and well-being of immigrant populations in alberta. issn 2563-9269 221 notable among these intersecting determinants is the role of precarious immigration status, which typically invokes fear of deportation, impedes access to critical services, and creates uncertainties about life itself. temporary foreign workers, undocumented migrants, and refugee claimants were particularly vulnerable to the mental health stress associated with precarious immigration status. this stress is understandable in light of existing canadian immigration policies, which allow temporary foreign workers and refugee claimants only a limited period of stay in canada (jackson & bauder, 2013; strauss & mcgrath, 2017). it is thus possible that these classes of immigrants feel anxious about returning to their home countries, possibly to the same socioeconomic or political conditions that triggered their emigration. perhaps, it is the fear of returning to adverse economic and political conditions in their home countries that forces some temporary workers to remain in canada as undocumented or illegal migrants, a status that limits their access to publicly funded healthcare resources, including mental health supports. the poor mental health status of temporary foreign workers, refugee claimants, and undocumented migrants can therefore be attributed to their low socioeconomic status, low wages, poor housing and working conditions, and poor access to essential services (salami, meharali, & salami, 2015). we further suggest that the social stratification of residents into temporary and permanent classes, with very different rights and privileges, invokes a sense of social inequality and a feeling of mental discomfort for those who feel disadvantaged, particularly temporary foreign workers and refugee claimants. in a recent study in australia, straiton et al. (2014) identified similar drivers of mental health disadvantages for immigrant populations with precarious status, especially when such liminality intersects with language barriers. the deskilling of immigrants in the labour market also presents enormous challenges to their mental well-being. immigrants in alberta and across canada demonstrate a disproportionate presence in those segments of the job market that offer minimum wages and require very little professional skills (george, chaze, fuller-thompson, & brennenstuhl, 2012; human resources development canada, 2013; islam, 2013; robert & gilkinson, 2012). this quagmire exists despite widespread acknowledgement that immigrants are some of the most educated and ihtp, 1(2), 214-225, 2021 cc by-nc-nd 4.0 professionally qualified groups in canada. in addition to low wages, this form of labour force participation offers limited opportunities for job satisfaction, career progression, and socioeconomic mobility. consequently, our participants noted widespread poverty, depression, and anxiety among immigrants who have experienced deskilling. racism, limited social networks, and lack of recognition for foreignacquired educational and professional qualifications are some of the factors that contribute to the perpetual entrapment of immigrants in minimumwage jobs in alberta and across canada. this finding confirms earlier reports of deskilling and employment discrimination against immigrants in canada (buzdugan & halli, 2009; creese & wiebe, 2012). in this paper, we have gone a step further to suggest possible connections between labour discriminatory practices and immigrants’ mental health. although social supports and a sense of community belonging are critical resources for mental health, our participants reported a general feeling of social isolation among immigrants in alberta. previous research evidence also indicates that new comers with limited community attachment and social networks have a greater risk for poor mental health outcomes (chadwick & collins, 2015; puyat, 2013), possibly because the absence of such relationships can create significant gaps in the resettlement process (tran et al., 2014). other researchers in this area have suggested a correlation between lack of social supports and several mental health problems, including depression and emotional problems (delara, 2016; ornelas & perreira, 2011; puyat, 2013). our findings also demonstrate the extent to which sociocultural stress affects the mental well-being of immigrants. exposure to western values and norms of behaviour, we noted, undergirds tensions and changing power relations in immigrant families. although new patterns of power and gender relations might seem empowering to previously disenfranchised women and children, they encapsulate seeds of family conflict and disintegration. as our participants reported, the high prevalence of family violence, divorce, single parenthood, and parent-child conflicts among immigrants can be attributable to the sociocultural stress that they face as part of the resettlement process. family disintegration, in turn, has proven to be detrimental to the mental well-being of issn 2563-9269 222 immigrants (donnelly et al., 2011; durbin, lin, moineddin, steel, & glazier, 2014; hollander, bruce, burstrom, & ekblad, 2011; pahwa, karunanayake, mccrosky, & thorpe, 2012; singhammer & bancila, 2011). previous studies have indeed shown that family violence and parental stress put more immigrants than non-immigrants at risk for mental health problems (browne et al., 2017; lee & hadeed, 2009). for a large number of immigrant women, economic pressures upon arrival often add a layer of mental health stress to the challenges posed by their traditional roles as mothers and homemakers. the physical and mental stress associated with balancing work and childcare has serious mental health implications for immigrant women, including depression and anxiety (ornelas, perreira, beeber, & maxwell, 2009). we suggest that the mental health impact of post-migration socioeconomic pressures are particularly salient for immigrant women who lack informal support networks and who are embracing the work-family balance for the first time. there is thus a need for interventions to address family-work balance. such interventions may range from financial assistance programs to counselling. these mental health determinants often intersect to produce complex mental health problems for immigrants. for example, precarious immigration status, unemployment, and isolation often converge to create loneliness and depression among undocumented temporary foreign workers. similarly, socioeconomic pressures (e.g., inadequate income) and sociocultural pressures (e.g., family conflicts) often also act simultaneously to increase anxiety and emotional stress for immigrant women. despite the widespread nature of these mental health risks, canada’s mental health support system appears to be culturally unprepared to accommodate the mental health needs of most immigrants. the overall impact of these intersecting influences has been the erosion of the ‘healthy immigrant effect’ after a period of stay in canada (islam, 2013; vang et al., 2015). we believe that the interaction of these determinants contributes to mental health degradation for immigrants in alberta. this pattern of mental health decline has also been reported in europe (rivera et al., 2016), which thus calls for a global response to the multiplicity of mental health risks confronting immigrants. ihtp, 1(2), 214-225, 2021 cc by-nc-nd 4.0 limitations although our study presents several insights on the determinants of immigrants’ mental health, it also has some important limitations, including its narrow focus on a singular canadian province. research in the other canadian provinces can thus help to produce a more nuanced understanding of the mental health vulnerabilities of immigrants in canada. our study was also based on interviews and focus groups conducted with service providers, whose views may differ from those held by immigrants with lived experiences of mental health problems. also, our participants were themselves predominantly immigrants. as such, they may have, in some instances, conflated their own experiences with those of their clients. future research should therefore consider integrating perspectives from immigrants themselves. conclusion to conclude, our research has identified the key factors affecting the mental health of immigrants in alberta. these factors are structural, macro-level mental health determinants that lie beyond the control of individual immigrants. our findings thus support earlier suggestions to redirect discursive explanations of immigrants’ health to focus more on structural-level influences. in this regard, we recommend the adoption of a social determinants of health framework for addressing the mental health vulnerabilities of immigrants. such an approach might include adopting policy interventions, institutional practices, and support systems that address precarious immigration status, poverty, unemployment, service inaccessibility, and sociocultural stress among immigrants. references ali, j. (2002). mental health of canada’s immigrants. supplement to health reports, 2002(13), 1– 11. braun, v., & clarke, v. (2006). using thematic analysis in psychology. qualitative research in psychology, 3(2), 77-101. doi: 10.1191/1478088706qp063oa browne, d. t., kumar, a., puente-duran, s., georgiades, k., leckie, g., & jenkins, j. (2017). emotional problems among recent issn 2563-9269 223 immigrants and parenting status: findings from a national longitudinal study of immigrants in canada. plos one 12(4), e0175023. doi: org/10.1371/journal.pone.0175023. buzdugan, r., & halli, s. s. (2009). labor market experiences of canadian immigrants with focus on foreign education and experience. international migration review, 43(2), 366– 386. doi:10.1111/j.1747-7379.2009.00768.x chadwick, k. a., & collins, p. a. (2015). examining the relationship between social support availability, urban center size, and selfperceived mental health of recent immigrants to canada: a mixed-methods analysis. social science & medicine, 128, 220–230. doi: 10.1016/j.socscimed.2015.01.036 collins, p. h. (2000). gender, black feminism, and black political economy. annals of the american academy of political & social science, 568(1), 41–53. doi:10.1177/000271620056800105 creese, g., & wiebe, b. (2012). ‘survival employment’: gender and deskilling among african immigrants in canada. international migration, 50(5), 56-76. doi:10.1111/j.14682435.2009. 00531.x crenshaw, k. (1989). demarginalizing the intersection of race and sex: a black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. university of chicago legal forum, 1989(1), article 8. delara, m. (2016). social determinants of immigrant women’s mental health. advances in public health, 2016. doi:10.1155/2016/9730162 donnelly, t. t., hwang, j. j., este, d., ewashen, c., adair, c., & clinton, m. (2011). if i was going to kill myself, i wouldn't be calling you. i am asking for help: challenges influencing immigrant and refugee women's mental health. issues in mental health nursing, 32(5), 279–290. doi:10.3109/01612840.2010.550383 durbin, a., lin, e., moineddin, r., steele, l. s., & glazier, r. h. (2014). use of mental health care for nonpsychotic conditions by immigrants in different admission classes and by refugees in ontario, canada. open medicine, 8(4), e136–e146. george, u., chaze, f., fuller-thomson, e., & brennenstuhl, s. (2012). underemployment ihtp, 1(2), 214-225, 2021 cc by-nc-nd 4.0 and life satisfaction: a study of internationally trained engineers in canada. journal of immigrants and refugee studies, 10(4), 407–425. doi:10.1080/15562948.2012.717827 hollander, a., bruce, d., burstrom, b., & ekblad, s. (2011). gender-related mental health differences between refugees and nonrefugee immigrants: a cross-sectional register-based study. bmc public health, 11(180). doi:10.1186/1471-2458-11-180 human resources development canada. (2013). human resources and skills development: annual report, canada 2013. retrieved from http://www12.hrsdc.gc.ca islam, f. (2013). examining the “healthy immigrant effect” for mental health in canada. university of toronto medical journal, 90(4), 169–175. islam, f., & oremus, m. (2014). mixed methods immigrant mental health research in canada: a systematic review. journal of immigrant & minority health, 16, 1284– 1289. doi:10.1007/s10903-013-9962-x jackson, s., & bauder, h. (2013). neither temporary, nor permanent: the precarious employment experiences of refugee claimants in canada. journal of refugee studies, 27(3), 360–381. doi:10.1093/jrs/fet048 kennedy, s., kidd, m. p., mcdonald, j. t., & biddle, n. (2015). the healthy immigrant effect: patterns and evidence from four countries. international migration & integration, 16, 317–332. doi:10.1007/s12134-014-0340-x kirmayer, l. j., narasiah, l., munoz, m., rashid, m., ryder, a. g., guzder, j., . . . pottie, k. (2011). common mental health problems in immigrants and refugees: general approach in primary care. canadian medical association journal, 183(12), e959–e967. doi:10.1503/cmaj.090292 lee, y. s., & hadeed, l. (2009). intimate partner violence among asian immigrant communities: health/mental health consequences, help-seeking behaviors, and service utilization. trauma, violence, & abuse, 10(2), 143–170. doi:10.1177/1524838009334130 lincoln, y. s., & guba, e. g. (1985). naturalistic inquiry. beverly hills, ca: sage. menezes, n. m., georgiades, k., & boyle, m.h. (2011). the influence of immigrant status and ihtp, 1(2), 214-225, 2021 cc by-nc-nd 4.0 issn 2563-9269 224 concentration on psychiatric disorder in canada: a multi-level analysis. psychological medicine, 41(10), 2221–2231. doi:10.1017/s0033291711000213 nangia, p. (2013). discrimination experienced by landed immigrants in canada. rcis working papers (working paper no. 2013/7). retrieved from http://www.ryerson.ca/content/dam/rcis/d ocuments/rcis_wp_parveen_nangia_no_2 013_7.pdf ng, e. (2011). the healthy immigrant effect and mortality rates. health reports, 22(4), 25– 29. ng, e., & omariba, w. r. (2010). is there a healthy immigrant effect in mental health? evidence from population-based health surveys in canada. in j. jedwab & s. kooi (eds.), canadian issues: immigrant mental health (pp. 23–28). retrieved from http://www.metropolis.net/pdfs/immigrant _mental_health_10aug10.pdf ornelas, i. j., & perreira, k. m. (2011). the role of migration in the development of depressive symptoms among latino immigrant parents in the usa. social science & medicine, 73(8), 1169–1177. doi: 10.1016/j.socscimed.2011.07.002 ornelas, i. j., perreira, k. m., beeber, l., & maxwell, l. (2009). challenges and strategies to maintaining emotional health: qualitative perspectives of mexican immigrant mothers. journal of family issues, 30(11), 1556-1575. doi:10.1177/0192513x09336651 pahwa, p., karunanayake, p., mccrosky, j., & thorpe, l. (2012). longitudinal trends in mental health among ethnic groups in canada. chronic diseases and injuries in canada, 32(3), 164–176. puyat, j. h. (2013). is the influence of social support on mental health the same for immigrants and non-immigrants? journal of immigrant & minority health, 15(3), 598–605. doi:10.1007/s10903-012-9658-7 rachel, b., mladovsky, p., ingleby, d., mackenbach, j. p., & mckee, m. (2013). migration and health in an increasingly diverse europe. lancet, 381(9873), 1235–1245. doi:10.1016/s0140-6736(12)62086-8 rivera, b., casal, b., & currais, l. (2016). the healthy immigrant effect on mental health: determinants and implications for mental health policy in spain. administration and policy in mental health & mental health services research, 43(4), 616–627. doi:10.1007/s10488-015-0668-3 robert, a. m., & gilkinson, t. (2012). mental health and well-being of recent immigrants in canada: evidence from the longitudinal survey of immigrants to canada (lsic). retrieved from http://www.cic.gc.ca/english/resources/res earch/mental-health.asp salami, b., meharali, s., & salami, a. (2015). the health of temporary foreign workers in canada: a scoping review. salami, b., salma, j., & hegadoren, k. (2019). access and utilization of mental health services for immigrants and refugees: perspectives of immigrant service providers. international journal of mental health nursing, 28(1), 152161. sandelowski, m. (2000). whatever happened to qualitative description? research in nursing & health, 23(4), 334–340. doi:10.1002/1098-240x. shishehgar, s., gholizadeh, l., digiacomo, m., & davidson, p. m. (2015). the impact of migration on the health status of iranians: an integrative literature review. bmc international health human rights, 15(20), 1–11. doi:10.1186/s12914-015-0058-7 singhammer, j., & bancila, d. (2011). associations between stressful events and self-reported mental health problems among nonwestern immigrants in denmark. journal of immigration & minority health, 13(2), 371– 788. doi:10.1007/s10903-009-9281-4 srirangson, a., thavorn, k., moon, m., & noh, s. (2013). mental health problems in thai immigrants in toronto, canada. international journal of culture & mental health, 6, 156–169. doi:10.1080/17542863.2012.677459 stafford, m., newbold, b. k., & ross, n. a. (2011). psychological distress among immigrants and visible minorities in canada: a contextual analysis. international journal of social psychiatry, 57(4), 428–441. doi:10.1177/0020764010365407 statistics canada (2018). immigration and ethnocultural diversity highlight tables, 2016 census. retrieved from https://www12.statcan.gc.ca/censushttp://www.cic.gc.ca/english/resources/research/mental-health.asp http://www.cic.gc.ca/english/resources/research/mental-health.asp ihtp, 1(2), 214-225, 2021 cc by-nc-nd 4.0 issn 2563-9269 225 recensement/2016/dp-pd/hltfst/imm/index-eng.cfm statistics canada (2013). immigration and ethnocultural diversity in canada, national household survey, 2011 (catalogue no. 99010-x2011001). retrieved from https://www12.statcan.gc.ca/nhsenm/2011/as-sa/99-010-x/99-010x2011001-eng.cfm statistics canada (2016). immigration and ethnocultural diversity: key results from the 2016 census. retrieved from https://www12.statcan.gc.ca/censusrecensement/2016/rt-td/imm-eng.cfm straiton, m., grant, j. f., winefield, h. r., & taylor, a. (2014). mental health in immigrant men and women in australia: the northwest adelaide health study. bmc public health, 14(1111), 1–15. doi:10.1186/1471-2458-14-1111 strauss, k., & mcgrath, s. (2017). temporary migration, precarious employment and unfree labour relations: exploring the ‘continuum of exploitation’ in canada’s temporary foreign worker program. geoforum, 78, 199-208. doi:10.1016/j.geoforum.2016.01.008 tran, a. n., ornelas, i. j., kim, m., perez, g., green, m., lyn, m. j., & corbie-smith, g. (2014). results from a pilot promotora program to reduce depression and stress among immigrant latinas. health promotion practice, 15(3), 365–372. doi:10.1177/1524839913511635 united nations department of economic and social affairs, population division (2020). international migration 2020. retrieved from https://reliefweb.int/sites/reliefweb.int/file s/resources/international%20migration%20 2020%20highlights.pdfvang, z., sigouin, j., flenon, a., & gagnon, a. (2015). the healthy immigrant effect in canada: a systematic review. population change and life course strategic knowledge cluster discussion paper series, 3(1). retrieved from http://ir.lib.uwo.ca/pclc/vol3/iss1/4 viruell-fuentes, e. a., miranda, p. y., & abdulrahim, s. (2012). more than culture: structural racism, intersectionality theory, and immigrant health. social science & medicine, 75(12), 2099–2106. doi:10.1016/j.socscimed.2011.12.037 weis, l., & fine, m. (2000). speed bumps: a student friendly guide to qualitative research. new york, ny: teachers college press. ihtp, 2(1), 35-50, 2022 cc by-nc-nd 4.0 issn 2563-9269 35 (im)mobilities and life satisfaction in times of covid-19: the case of older persons in switzerland iuna dones1,2,3, ruxandra oana ciobanu1,3, marie baeriswyl 3,4 1faculty of social work, university of applied sciences and arts western switzerland, (hetsl | hes-so), lausanne, switzerland; 2institute of sociological research (isr), university of geneva, geneva, switzerland; 3 swiss centre of expertise in life course research, university of geneva, geneva, switzerland;4 centre for the interdisciplinary study of gerontology and vulnerability, university of geneva, geneva, switzerland corresponding author: i. dones (iuna.dones@hetsl.ch) abstract the covid-19 pandemic led to changes in mobilities worldwide. physical movement and social contact are shown to be correlated to life satisfaction. in this paper we are interested in how during the pandemic other types of mobilities relate to life satisfaction. the paper draws on a survey (n=643) among persons aged 65+ in switzerland. results show that engagement in communicative mobilities are related to higher life satisfaction, imaginative mobilities only partially relate to life satisfaction, and virtual mobilities have no correlation. keywords covid-19, communicative mobilities, imaginative mobilities, virtual mobilities funding source this work was supported by the swiss national science foundation professorship grant ‘transnational ageing among older migrants and natives: a strategy to overcome vulnerability’, grant number pp00p1_179077/1. introduction the end of mobility as we know it for long we have taken physical mobility for granted. most of the research has been focusing on the hypermobile society (musselwhite et al., 2015; musselwhite & haddad, 2010). there is an abundance of scholarship looking at various types of physical mobilities and how these are associated to higher subjective well-being for younger and older persons (de vos et al., 2013; nordbakke & schwanen, 2014; schwanen & ziegler, 2011; ziegler & schwanen, 2011). in relation to older persons in particular, the independence and autonomy of exercising physical mobility contributes to this population’s subjective well-being (schwanen & ziegler, 2011). but what happens if these taken-for-granted mobilities, from the basic ones of going out for a walk or going grocery shopping, taking public transport to visit friends, all the way to taking a plane or a train for the holidays are disrupted by a global pandemic? the covid-19 pandemic has made the daily news and invaded our lives since early spring 2020. in switzerland, the decision was to have a partial lockdown: shops and services that were not providing or responding to basic needs were closed, social gatherings were limited to a maximum of five persons, and people were advised to leave the house only if necessary. persons aged 65 and over, and those with an underlying health condition were identified as especially vulnerable and were particularly recommended to remain secluded and avoid contact with others. because of the absence of a complete lockdown like, for instance, the ones in italy or france, we decided to use the terms partial ihtp, 2(1), 35-50, 2022 cc by-nc-nd 4.0 issn 2563-9269 36 confinement and semi-confinement throughout this paper. the literature acknowledges that there are various forms of mobilities which are not limited to the physical ones. in this paper we draw on the definition of ziegler and schwanen (2011), who “conceptualize mobilities as the overcoming of any type of distance between a here and a there, which can be situated in physical, electronic, social, psychological or other kinds of space” (ziegler & schwanen, 2011, p. 758). in this paper we look at the alternative forms of mobilities in which older persons engaged during a period of reduced physical mobility or even immobility, and the extent to which these forms of mobility are related to life satisfaction. we rooted the conceptualization of our survey in the new mobilities paradigm, which approaches mobilities in a broad sense. it considers mobilities as not being only limited to corporeal movement or travel, but also as encompassing other forms of mobility (hannam et al., 2006; sheller & urry, 2006). according to urry (2007), mobilities comprise imaginative travel through media, photos, books, and television; virtual travel via the internet; communicative travel using various technologies, such as text messages, skype, e-mails, and so on, the physical movement of objects, and corporeal travel. confronted with a unique situation, that of the covid-19 pandemic, which has led to restrictive measures in most of the world – some marked by recommended confinement, and others by a total lockdown – people were compelled to adapt their behaviors, often reducing physical mobility, and engage in other forms of mobilities. therefore, our research question is: which forms of alternative mobilities are associated with older persons’ life satisfaction? the new mobilities paradigm has already been applied to older populations based on the assumption that once they experience a decrease in physical mobility due to old age, they can compensate by engaging in other forms of alternative mobilities (ciobanu & hunter, 2017; ziegler & schwanen, 2011). therefore, given that covid-19 semi-confinement was particularly focused on limiting older persons’ physical mobility to protect them from infection, studying other forms of mobilities in this context and in this population is particularly pertinent. the paper is innovative in the following two ways: 1) most of the literature on the link between mobilities and different indicators of subjective wellbeing has been focused on physical mobilities, and there is a paucity of research exploring other forms of mobilities – particularly virtual and imaginative – and their relation to life satisfaction, which we aim to contribute to; 2) we draw on an original survey conducted during this unusual health crisis. the article is structured into five parts: we start with a theoretical anchoring of our paper in the literature on communicative, imaginative, and virtual mobilities and subjective well-being, then we present our data and methods, followed by our empirical findings, the discussion of our results, and finally the conclusions of the paper. conceptual underpinning on mobilities and subjective well-being: a theoretical framework in the following section we discuss the concept of subjective well-being and how it has been linked to different forms of mobilities stemming from the new mobilities paradigm (hannam et al., 2006; sheller & urry, 2006; urry, 2007). subjective well-being is defined as “a person’s cognitive and affective evaluations of his or her life as a whole” (oishi et al., 2018, p. 1). this includes the personal perceptions and experiences of positive and negative emotions, as well as global and specific cognitive evaluations of life satisfaction (proctor, 2014). although the literature on subjective wellbeing and alternative mobilities types is scarce, the research that does exist largely focuses on the cognitive dimension (chai & kalyal, 2019; heo et al., 2015). therefore, we opted to use the concept of life satisfaction, a cognitive component of subjective well-being. throughout the text, we use the terms life satisfaction and subjective well-being interchangeably. there are two approaches to subjective well-being: the universalist and the contextualist. the former holds that subjective well-being is stable and ihtp, 2(1), 35-50, 2022 cc by-nc-nd 4.0 issn 2563-9269 37 independent of time and place. the latter holds that subjective well-being is rooted in people’s past experiences, aspirations, culture, and more generally context (nordbakke & schwanen, 2014). given the existing research on the relationship between different factors – like health, social contact, physical mobility, etc. – and subjective well-being (de vos et al., 2013; deaton, 2008; kööts-ausmees & realo, 2015; nordbakke & schwanen, 2014; pinquart & sorensen, 2000; revord et al., 2018; schwanen & ziegler, 2011; ziegler & schwanen, 2011), we adhere to the contextual approach. studies exploring particularly the impact of the covid-19 pandemic on subjective well-being have also adopted this contextual approach. pedraza and colleagues (2020) for instance, found that statemandated measures aimed at restricting physical mobilities were associated with increased life dissatisfaction and anxiety. these state-mandated measures were also perceived as a type of social isolation, which had important negative consequences for individuals’ subjective well-being (anastasiou & duquenne, 2021; brooks et al., 2020; clair et al., 2021). some research has studied how, despite the negative correlation between reduced physical mobility and subjective well-being, individuals – and older adults in particular – were able to cope with this period. it was found that the most common coping strategies among older adults included outdoor activities, exercise, adhering to covid-19 precautions, hobbies like reading, cooking, or listening to audiobooks, and social connection through various forms of communication (finlay et al., 2021; whitehead & torossian, 2021). communicative mobility if physical mobility can be used to reach out and meet others (ziegler & schwanen, 2011), similarly communicative mobility is a means to establish and maintain contact with friends and family. both telephones and internet-based communication appear to be key in maintaining contact. looking at internet use, heo and colleagues (2015) observe that this constitutes a tool for older persons to be in contact with others and exchange emotional support, which in its turn can lead to higher psychological wellbeing and life satisfaction. it is particularly the social component of internet-mediated communication that brings about well-being and happiness (chai & kalyal, 2019), and this even among the oldest-old (sims et al., 2016). in this sense, the use of telephones also increases social connectedness and subjective well-being (chai & kalyal, 2019). the importance of communicative mobility has been studied also for older international migrants, for whom communication at a distance, mediated using technology, has been positively linked to quality of life (zhang, 2016). when comparing active to passive internet use and their relation to life satisfaction, researchers found that active use for communication purposes is positively correlated to life satisfaction after the age of 63, while passive use for non-communicative activities like looking at content on a smartphone is negatively correlated to life satisfaction, and these relationships remain significant after controlling for social network size and interactions (stevic et al., 2019). stevic and colleagues (2019) explained the positive effect of the use of smartphones for communicative purposes among retirement-age individuals through the social compensation hypothesis and the social convoy model. with retirement, individuals experience a reduction in their social convoy, that is the various social relations (partner and family relations, friends, and neighbors and work colleagues) that accompany a person throughout their life course (antonucci et al., 2013). the social compensation hypothesis holds that “individuals compensate for the lack of face-to-face friendships by extending their online social sphere” (stevic et al., 2019, p. 3), with positive implications for their life satisfaction. moreover, a study particularly relevant for our research shows that the use of information and communications technology (ict) for older persons aged 75 and over can increase subjective well-being through its facilitation of contact with family, which is especially important for frail persons (fang et al., 2018). specifically, during the first wave of the covid19 pandemic, increased interaction with friends and families through various forms of communication like phone calls, text messages, and video calls, was shown to be an important coping strategy for older adults (finlay et al., 2021; whitehead & torossian, 2021). in fact, a study on older persons in germany revealed that, during the first period of the pandemic, individuals who used the internet less frequently to stay in contact with friends and family reported lower ihtp, 2(1), 35-50, 2022 cc by-nc-nd 4.0 issn 2563-9269 38 life satisfaction, increased loneliness, and more depressive symptoms than daily users (hajek & könig, 2021). nonetheless, the relationship between different forms of communication and life satisfaction during the covid-19 pandemic is still not widely documented, and our research aims to fill this gap. following from this literature review, our first hypothesis is that frequent engagement in communicative mobility practices is associated with higher life satisfaction because it allows persons to stay in contact with others. imaginative mobility in the category of imaginative mobility, one can include looking at photos, looking outside the window, media consumption, reading literature, and so on (urry, 2007). looking from the window appears to be a very important activity, particularly for those unable to leave their homes and for those whose physical mobilities are very limited (musselwhite, 2018; rowles, 1981). drawing on qualitative interviews, musselwhite (2018) shows that older persons with physical mobility impairments engage and indirectly participate in the outside community through window watching. musselwhite (2018) investigates how this view from the inside to the outside helps these individuals “stay somewhat connected to the outside space that they cannot physically inhabit” (p. 274). the view from the window – whether rural or urban, whether marked by the presence or absence of passers-by – “served as a way of creating representations of life and help [individuals] engage and reflect on changes in lifestyles, it kept them part of society” (musselwhite, 2018, p. 280). at the same time, looking from the window can also allow for indirect contact with nature, which enhances well-being (kaplan mintz et al., 2021; kaplan, 2001). in fact, a quantitative study conducted during the first covid-19 lockdown in israel on adults of all ages demonstrated that individuals with high levels of nature views from windows reported higher subjective well-being than those with less nature views (kaplan mintz et al., 2021). in a similar way, as physical connections to the outside world become more difficult with old age – and were restricted during our study’s period of partial confinement – they can be replaced by memories and imaginative connections, which can also be formed through looking at photographs (musselwhite, 2018). these feelings of inclusion in society enable people to experience a sense of belonging, even at a distance (gehl, 2011), which in turn contributes to their life satisfaction (massey et al., 2021). despite this concept of belonging from a distance, and the importance of window views for individuals’ well-being (kaplan mintz et al., 2021; peters & halleran, 2021), not many studies have investigated the role of these imaginative mobilities in older adults’ life satisfaction during the covid-19 pandemic. our second hypothesis is therefore that frequent engagement in imaginative mobility practices is correlated to higher life satisfaction. virtual mobility to the best of our knowledge, there is no research linking virtual mobility using virtual travel or virtual museum visits to subjective well-being. while not focused on measures of subjective well-being, winstead and colleagues (2013) looked at how social and spatial barriers are affected by the use of icts in assisted and independent living communities. they observed that physically bound participants who enjoyed visiting museums earlier in their lives appreciated having the newly discovered ability to look at art on the internet. moreover, older individuals used google maps to travel back to their hometowns and visit places they were attached to and described these activities in a positive manner. because of these positive experiences among research participants, we can infer that virtual mobility may have a positive impact on life satisfaction. this therefore leads us to our third hypothesis: frequent engagement in virtual mobility practices is associated with higher life satisfaction. methods the paper draws on an original survey on the impact of the covid-19 pandemic on the situation of persons aged 65 and over in switzerland. we developed a survey in french and put it online through the platform limesurvey. the questionnaire was submitted and accepted by the ethics committee of the faculty of social sciences of the university of geneva. to obtain informed consent, we inserted one ihtp, 2(1), 35-50, 2022 cc by-nc-nd 4.0 issn 2563-9269 39 question asking respondents if they accepted to have their answers used for scientific publications and presentations in conferences. we applied a convenience sampling method and distributed the link to the questionnaire through the platform of associations for older persons in geneva, the university of geneva website, one of the local newspapers in geneva, and widely in our personal and institutional networks. the reason for the adoption of a convenience sampling method is the coronavirus health crisis, which made it difficult, if not impossible, to recruit and talk to participants in person, as well as the time constraints to gather information while the pandemic restrictions were still in place. data were collected from april 18 to may 19, 2020, which fell within the period of recommended limited mobility in switzerland, during which a semiconfinement was in place. the resulting data were cleaned and analyzed with the use of spss statistical software. in total, 787 individuals 65 and older participated to the research, either by completing the questionnaire themselves (n= 748) or with the help of a friend or relative with internet access (n=39). among these, we excluded from the working sample 74 people who did not respond to all the satisfaction with life scale items, and an additional 70 who did not respond to other interest variables included in our analysis, leaving us with 643 participants. out of them 67.3% are women and 32.7% men. the mean age in our working sample is 73.3 years old, with a standard deviation of 5.75. because of the convenience sampling method, our sample of individuals 65 and older is composed of an overrepresentation of individuals with a tertiary level of education (65.6% had a tertiary level of education and 29.9% a secondary level, in comparison to the swiss population of 65 and over, with 20.2% at a tertiary education level and 49.1% at a secondary level) (fso, 2018). see table 1 for more descriptive statistics on the composition of our sample. measures our dependent variable is life satisfaction, measured by the satisfaction with life scale (diener et al., 1985), a 5-item scale assessing the cognitive dimension of subjective well-being, and one of the most frequently used scales in subjective well-being research (maddux, 2018). the scale is composed of the following items: 1. in most ways my life is close to my ideal. 2. the conditions of my life are excellent. 3. i am satisfied with my life. 4. so far, i have gotten the important things i want in life. 5. if i could live my life over, i would change almost nothing. participants were instructed to indicate their level of agreement with each item on a 7-point scale, ranging from “1=strongly disagree” to “7=strongly agree”. the answers for each item were then added to create an individual score, ranging from 5 to 35. cronbach’s alpha was 0.87. our sample had a mean life satisfaction score of 28.8 and standard deviation of 5.0. these results were not very different from the swiss population of 65 and older as another study on a representative sample of the swiss population of 65 and older showed a mean life satisfaction score of 26.8 and standard deviation of 5.4 (baeriswyl & oris, 2021). the slight difference between the mean life satisfaction of our sample and that of the swiss population 65 and older can be attributed to the composition of our sample: we had an overrepresentation of healthy and highly educated individuals, and these aspects tend to positively influence life satisfaction (diener et al., 1999). our key independent variables are indicators of communicative mobility, imaginative mobility, and virtual mobility during the partial confinement period. we used two separate questions for each type of mobility. because for the independent variables that we study – alternative forms of mobilities – there are no validated questions, to the best of our knowledge, we therefore elaborated ourselves the questions, taking inspiration in the existing literature (ciobanu & hunter, 2017; urry, 2007). for communicative mobility we asked, “in the past week, how often have you spoken on the phone?” as well as, “last week, how often did you use digital means to communicate with friends or family?”. for imaginative mobility we asked, “people sometimes ihtp, 2(1), 35-50, 2022 cc by-nc-nd 4.0 issn 2563-9269 40 spend time looking out the window. this may be looking at passers-by, street life or nature. in the past week, how often have you done this?” and, “in the past week, how often have you looked at photos?”. possible answer categories for these questions were “never”, “once during the week”, “two to three times during the week”, “four to six times during the week”, “every day, less than three hours” and “every day, three hours or more”. we then recoded the first two answer choices as “once a week or less”, the next two as “several times a week” and the last two as “every day”. for virtual mobility we asked, “in the past week, have you visited any museums and/or exhibitions on the internet?” as well as, “in the past week, have you researched possible travel destinations on the internet?”. answer choices were “yes” or “no”. see table 2 for descriptive statistics of these variables. basing ourselves on the life satisfaction and mobilities literature, we controlled our analyses of the links between life satisfaction and alternative mobilities for the following sociodemographic variables: sex, age, education level, relationship status, whether the participant has children, and selfrated health. we coded education level into three categories: without post-compulsory training, secondary, and tertiary. we coded relationship status in two categories: single individuals, and individuals in a partnership (whether married or in another form of relationship). we measured self-rated health by asking participants, “how do you rate your health in general?”. answer choices were “very good”, “good”, “fairly good”, “bad”, and “very bad”. we then created a dichotomous variable with the first two categories signifying good health status, and the last three representing average/bad health status. in addition, we controlled our analyses for the two following personal resources variables: praying and interaction with neighbors during the partial confinement period. we included the act of praying because religiosity has been found to positively impact life satisfaction (amit, 2010), and we measured it as a dichotomous variable (has not prayed the previous week, has prayed the previous week). we also included interaction with neighbors as a form of social contact during a time when contact was limited due to partial confinement, as social contact has been found to be positively correlated with life satisfaction (warr et al., 2004). we measured this by asking participants which of the following interactions they have had with their neighbors: “none”, “said hello”, “courtesy visits”, “helped each other”. we then created a dichotomous variable by grouping the first two categories in “minimal to no interaction” and the latter two in “strong interaction”. moreover, we controlled our analyses for self-related health and level of education. we did not control for physical mobility because most of our participants (92.7%) went out of the house at least once during the semi-confinement, whether it was to walk the dog, go to the garden, or go grocery shopping. despite this ability to go out, the restrictions on physical mobility were undeniable, as nonessential businesses were closed and face-to-face meetings were strongly discouraged. data analysis we ran two linear regression models on the life satisfaction score. in the first model, we tested the 6 mobility variables, and in the second we added the sociodemographic and personal resources variables as control variables. see table 3 for the final models of the regression results. results most of our working sample engaged in forms of communicative mobilities during partial confinement: 53.8% reported talking on the phone every day, 42.6% did the activity several times a week, while only 3.6% did this once a week or less. moreover, 68.6% of our sample used digital means to communicate every day, 26.0% did so several times a week, and 5.4% did so once a week or less. engagement in imaginative mobilities during partial confinement varied: 36.4% reported looking out the window every day, 32.3% did this several times a week, and 31.3% did this once a week or less. the other measure of imaginative mobility – looking at photos – was less prominent among our participants: 8.1% did this every day, 28.9% did this several times a week, while 63.0% did this once a week or less. most of our working sample did not engage in imaginative mobilities during this period: only 18.8% reported having visited museums or expositions on ihtp, 2(1), 35-50, 2022 cc by-nc-nd 4.0 issn 2563-9269 41 the internet, and only 12.8% reported having searched travel destinations on the internet. table 3 shows that the importance of communicative mobility linked to life satisfaction is confirmed, supporting our first hypothesis. the analysis shows that individuals who talked on the phone once a week or less reported lower life satisfaction in comparison to those who talked on the phone every day. moreover, those who use digital means to communicate with friends and family only once a week or less report lower life satisfaction than those who do so every day. these relationships remain significant even after controlling for sociodemographic and personal resources variables. the results for the relationship between imaginative mobility and life satisfaction vary. looking outside the window during this period is significantly associated to life satisfaction. those who looked out the window every day reported higher life satisfaction than those who did it several times a week, but there is no significant difference between those who only did the activity once a week or less and those who did it every day. on the other hand, looking at photos during the partial confinement period is not significantly related to life satisfaction. our second hypothesis is thus only partially confirmed. in terms of virtual mobility, neither of the two virtual mobility variables are significantly correlated with life satisfaction. our third hypothesis is therefore rejected. other variables that are significantly and positively linked to life satisfaction are being in a relationship and being in good health. having had strong interactions with neighbors and having prayed during the partial confinement are also positively correlated with life satisfaction, but at a significance level between 0.05 and 0.10. discussion the importance of communicative mobilities whether directly or indirectly, all forms of mobilities are seen as means of connecting to others and connecting to our environment, but our study shows that among individuals 65 and older, it is primarily communicating with others that positively correlates to life satisfaction during the public health crisis. as stevic and colleagues (2019) and hajek and könig (2021) found, smartphone and internet use for communicative purposes is positively associated with life satisfaction. our study confirms this relationship between internet use and life satisfaction, if internet use implies communicative purposes, for we also found that internet use for visiting museums or researching travel destinations has no correlation to life satisfaction. during a period in which physical socialization was severely restricted and in which older individuals were deemed a vulnerable population at risk of severe consequences due to covid-19, this study highlights the importance of communicative mobilities that promote social support and social connectedness, whether through internet-based means or more classic telephone communication. social support, which can be conceptualized either as “the actual transfer of advice, aid, and affect through interpersonal networks during a specific period of time” (liang et al., 2001, p. 512) or as “a perception of hypothetical resource availability” (liang et al., 2001, p. 512) has been shown to be a predictor of life satisfaction in older adulthood and in general across all ages (aquino et al., 1996; siedlecki et al., 2014). this paper underlines that, during a pandemic that physically drove individuals apart, social connectedness is still possible using communicative mobilities, and the more frequent use of these mobilities is correlated to higher life satisfaction. the importance of social interaction for life satisfaction is further shown by two of our control variables: being in a relationship and, to a lesser extent, having had a strong interaction with neighbors during the partial confinement period. this confirms the existing literature stating that having meaningful relationships is important to life satisfaction (baeriswyl & oris, 2021; revord et al., 2018). to the best of our knowledge, only one study (kaplan mintz et al., 2021) has investigated the relationship between window views and subjective well-being during covid-19, but it focuses primarily on the presence of nature in the window views, rather than on the activity of looking outside the window itself. moreover, the study does not specify the ihtp, 2(1), 35-50, 2022 cc by-nc-nd 4.0 issn 2563-9269 42 frequency of participants’ window watching, and it includes adults of all ages instead of focusing on older adults, for which the implications of window watching on their subjective well-being may be different. our paper therefore adds an additional element to the literature on the subject. we therefore base ourselves on musselwhite’s (2018) study, which states that older persons indirectly participate in the outside community through window watching. our results show that those who looked out the window every day reported a higher life satisfaction than those who did the activity several times a week. we can presume that looking out the window more often can be likened to greater social participation, albeit indirect, and since social participation is correlated with subjective wellbeing measures (baeriswyl & oris, 2021), this can explain these results. however, if looking out the window is a proxy for indirect social participation, we would expect that those who looked out the window only once a week or less would also report lower life satisfaction in comparison to those who did it every day, but this was not the case. one way to explain this is to presume that those who rarely or never look out the window do not have a need for this indirect social participation, and this activity is therefore not related to their life satisfaction. for older persons with reduced mobility, looking outside the window is an important pass time activity. in a period of reduced physical mobility, as was the semi-confinement, it became even more important. according to musselwhite (2018), it is less important what somebody sees, rather it is important to broaden one’s horizon to the space and environment outside one’s home, which can be experienced as a limited space during this period. however, according to kaplan mintz and colleagues’ study (2021), what somebody sees is important indeed: windows with greater views of nature are related to higher levels of subjective well-being. our study did not include variables on the type of scenery viewed from participants’ windows. nonetheless, whether the views are of nature or of urban settings, by looking outside from the window, people can project themselves in mobility, and when seeing others outside, those who are immobile can experience a form of mobility by proxy. once again, we have not found any research on the relationship between looking at photos – our second imaginative mobility variable – and life satisfaction. it is therefore difficult to explain the absence of relationship between these two variables. we can however think that looking at photos can generate two different reactions: one the one hand it can trigger feelings of nostalgia, which have been found to be positively correlated with life satisfaction (rao et al., 2018), as they “may render the present self more positive and promote a brighter outlook on the future” (ye et al., 2018, p. 1749). on the other hand, it can act as a reminder of the physical divisiveness brought about by the pandemic. these opposing reactions may thus cancel each other out and explain the non-significance of this type of imaginative mobility in relation to life satisfaction. the lack of correlation between either virtual mobility variable and life satisfaction can be explained by the fact that neither of these mobility variables concern any type of social participation or social connectedness. moreover, we find good self-reported health to be positively associated with life satisfaction, which replicates existing research findings (deaton, 2008; kööts-ausmees & realo, 2015; pinquart & sorensen, 2000). and lastly, having prayed during partial confinement is positively associated with life satisfaction, which is congruent to the found relationship between religiosity and our dependent variable (amit, 2010). the general hypothesis that we started with, that mobilities as conceived by the new mobilities paradigm (urry, 2007) can constitute important resources, notably in the context of reduced physical mobility imposed by the semi-confinement and that it would have an impact on well-being, is not globally confirmed. yet, when looking at virtual, communicative, and imaginative mobilities, we conclude that what is of importance to life satisfaction in this pandemic context is social interaction, whether direct or indirect. limitations and conclusion the covid-19 pandemic and the partial confinement that was linked with it provided us with a unique situation. researchers in social sciences quickly ihtp, 2(1), 35-50, 2022 cc by-nc-nd 4.0 issn 2563-9269 43 mobilized to study the impact of the public health crisis at the micro, meso, and macro levels (gamba et al., 2020). the same variables that have shaped individuals’ lives have also had an impact on the conditions under which we conducted research. the main limitation of this study is the fact that the sample on which it is based is not representative, as we were not able to capture the entire diversity of switzerland’s socio-economic levels. to accurately analyze both subjective evaluations and objective behaviors, it was essential to collect our data during the semi-confinement. because of this, we had to rely on a convenience sampling method, which involved an internet-based survey. consequently, our respondents were persons with internet connection, or who were interviewed by friends or family. despite our awareness of this sample limitation, this was the only way we could reach individuals aged 65 and over given the time and contextual restraints. another limitation is that our study does not investigate whether communicative, imaginative, and virtual mobilities compensate for physical ones, as we do not analyze the change in mobilities before partial confinement and during it, but rather our research analyzed whether they constitute potential resources in a context that limits physical mobilities. given the importance of communicative mobilities for life satisfaction among older persons, it would be beneficial for future policies to invest in literacy and access to information and communication technologies. these would equip older individuals with the necessary reserves (cullati et al., 2018) to activate communication channels when confronted with physical immobility brought about by old age. acknowledgement authors would like to thank cornelia hummel, michel oris, franz schultheis and philippe wanner for their assistance in the elaboration of the present study and questionnaire. references amit, k. (2010). determinants of life satisfaction among immigrants from western countries and from the fsu in israel. social indicators research, 96(3), 515–534. https://doi.org/10.1007/s11205-009-9490-1 anastasiou, e., & duquenne, m. n. (2021). first-wave covid-19 pandemic in greece: the role of demographic, social, and geographical factors in life satisfaction during lockdown. social sciences, 10(6). https://doi.org/10.3390/socsci10060186 antonucci, t. c., ajrouch, k. j., & birditt, k. s. (2013). the convoy model: explaining social relations from a multidisciplinary perspective. the gerontologist, 54(1), 82–92. https://doi.org/10.1093/geront/gnt118 aquino, j. a., russell, d. w., cutrona, c. e., & altmaier, e. m. (1996). employment status, social support, and life satisfaction among the elderly. journal of counseling psychology, 43(4), 480– 489. https://doi.org/10.1037/00220167.43.4.480 baeriswyl, m., & oris, m. (2021). social participation and life satisfaction among older adults : diversity of practices and social inequality in switzerland. ageing & society, 1–25. https://doi.org/10.1017/s0144686x21001057 brooks, s. k., webster, r. k., smith, l. e., woodland, l., wessely, s., greenberg, n., & rubin, g. j. (2020). the psychological impact of quarantine and how to reduce it: rapid review of the evidence. the lancet, 395(10227), 912–920. https://doi.org/10.1016/s01406736(20)30460-8 chai, x., & kalyal, h. (2019). cell phone use and happiness among chinese older adults: does rural/urban residence status matter? research on aging, 41(1), 85–109. https://doi.org/10.1177/0164027518792662 ciobanu, r. o., & hunter, a. (2017). older migrants and (im)mobilities of ageing: an introduction. population, space and place, 23(5), e2075. https://doi.org/10.1002/psp.2075 clair, r., gordon, m., kroon, m., & reilly, c. (2021). the effects of social isolation on well-being and life satisfaction during pandemic. humanities and social sciences communications, 8(1), 1–6. https://doi.org/10.1057/s41599-021-00710-3 cullati, s., kliegel, m., & widmer, e. (2018). development of reserves over the life course and onset of vulnerability in later life. nature human behaviour, 2(8), 551–558. https://doi.org/10.1038/s41562-018-0395-3 de vos, j., schwanen, t., van acker, v., & witlox, f. (2013). travel and subjective well-being: a focus on findings, methods and future research ihtp, 2(1), 35-50, 2022 cc by-nc-nd 4.0 issn 2563-9269 44 needs. transport reviews, 33(4), 421–442. https://doi.org/10.1080/01441647.2013.8156 65 deaton, a. (2008). income, health, and well-being around the world: evidence from the gallup world poll. journal of economic perspectives, 22(2), 53–72. https://doi.org/10.1257/jep.22.2.53 diener, e., emmons, r. a., larsen, r. j., & griffin, s. (1985). the satisfaction with life scale. journal of personality assessment, 49(1), 71–75. https://doi.org/10.1207/s15327752jpa4901_1 3 diener, e., suh, e. m., lucas, r. e., & smith, h. l. (1999). subjective well-being: three decades of progress. psychological bulletin, 125(2), 276– 302. https://doi.org/10.1037/00332909.125.2.276 fang, y., chau, a. k. c., wong, a., fung, h. h., & woo, j. (2018). information and communicative technology use enhances psychological wellbeing of older adults: the roles of age, social connectedness, and frailty status. aging & mental health, 22(11), 1516–1524. https://doi.org/10.1080/13607863.2017.1358 354 finlay, j. m., kler, j. s., o’shea, b. q., eastman, m. r., vinson, y. r., & kobayashi, l. c. (2021). coping during the covid-19 pandemic: a qualitative study of older adults across the united states. frontiers in public health, 9(april), 1–12. https://doi.org/10.3389/fpubh.2021.643807 fso. (2018). formation achevée la plus élevée en suisse [highest educational attainment in switzerland]. federal statistical office. https://www.bfs.admin.ch/bfs/fr/home/statist iques/education-science/niveauformation/niveau-formationregional.assetdetail.11627134.html gamba, f., nardone, m., ricciardi, t., & cattacin, s. (2020). covid-19: le regard des sciences sociales. seismo. gehl, j. (2011). life between buildings: using public space. island press. hajek, a., & könig, h.-h. (2021). frequency of contact with friends and relatives via internet and psychosocial factors in middle‐aged and older adults during the covid‐19 pandemic. findings from the german ageing survey. international journal of geriatric psychiatry, 37(1). https://doi.org/10.1002/gps.5623 hannam, k., sheller, m., & urry, j. (2006). editorial: mobilities, immobilities and moorings. mobilities, 1(1), 1–22. https://doi.org/10.1080/17450100500489189 heo, j., chun, s., lee, s., lee, k. h., & kim, j. (2015). internet use and well-being in older adults. cyberpsychology, behavior, and social networking, 18(5), 268–272. https://doi.org/10.1089/cyber.2014.0549 kaplan mintz, k., ayalon, o., nathan, o., & eshet, t. (2021). see or be? contact with nature and well-being during covid-19 lockdown. journal of environmental psychology, 78(june), 101714. https://doi.org/10.1016/j.jenvp.2021.101714 kaplan, r. (2001). the nature of the view from home. environment and behavior, 33(4), 507–542. https://doi.org/10.1177/00139160121973115 kööts-ausmees, l., & realo, a. (2015). the association between life satisfaction and self-reported health status in europe. european journal of personality, 29(6), 647–657. https://doi.org/10.1002/per.2037 liang, j., krause, n. m., & bennett, j. m. (2001). social exchange and well-being: is giving better than receiving? psychology and aging, 16(3), 511– 523. https://doi.org/10.1037//08827974.16.3.511 maddux, j. e. (2018). subjective well-being and life satisfaction: an introduction to conceptions, theories, and measures. in j. e. maddux (ed.), subjective well-being and life satisfaction (pp. 3–31). routledge. massey, b., edwards, a. v., & musikanski, l. (2021). life satisfaction, affect, and belonging in older adults. applied research in quality of life, 16(3), 1205–1219. https://doi.org/10.1007/s11482019-09804-2 musselwhite, c. (2018). the importance of a room with a view for older people with limited mobility. quality in ageing and older adults, 19(4), 273–285. https://doi.org/10.1108/qaoa-01-2018-0003 musselwhite, c., & haddad, h. (2010). mobility, accessibility and quality of later life. mobility, accessibility and quality of later life, 11, 25–37. musselwhite, c., holland, c., & walker, i. (2015). the role of transport and mobility in the health of older people. journal of transport & health, 2(1), 1–4. https://doi.org/10.1016/j.jth.2015.02.001 nordbakke, s., & schwanen, t. (2014). well-being and ihtp, 2(1), 35-50, 2022 cc by-nc-nd 4.0 issn 2563-9269 45 mobility: a theoretical framework and literature review focusing on older people. mobilities, 9(1), 104–129. https://doi.org/10.1080/17450101.2013.7845 42 oishi, s., diener, e., & lucas, r. e. (2018). subjective well-being: the science of happiness and life satisfaction. in c. r. snyder, s. j. lopez, l. m. edwards, & s. c. marques (eds.), the oxford handbook of positive psychology, 3rd edition (3rd ed.). oxford university press. https://doi.org/10.1093/oxfordhb/978019939 6511.013.14 pedraza, p. de, guzi, m., & tijdens, k. (2020). life dissatisfaction and anxiety in covid-19 pandemic. in eur 30243 en. https://doi.org/10.2760/755327 peters, t., & halleran, a. (2021). how our homes impact our health: using a covid-19 informed approach to examine urban apartment housing. archnet-ijar: international journal of architectural research, 15(1), 10–27. https://doi.org/10.1108/arch-08-2020-0159 pinquart, m., & sorensen, s. (2000). influences of socioeconomic status , social network , and competence on subjective well-being in later life : a meta-analysis. psychology and aging, july. https://doi.org/10.1037/08827974.15.2.187 proctor, c. (2014). subjective well-being. in encyclopedia of quality of life and well-being research (pp. 6437–6441). springer netherlands. https://doi.org/10.1007/978-94007-0753-5_2905 rao, m., wang, x., sun, h., & gai, k. (2018). subjective well-being in nostalgia : effect and mechanism. psychology, 1720–1730. https://doi.org/10.4236/psych.2018.97102 revord, j., walsh, l. c., & lyubomirsky, s. (2018). positive activity interventions to engage wellbeing: looking through a social psychological lens. in j. e. maddux (ed.), subjective well-being and life satisfaction (pp. 451–465). routledge. https://doi.org/https://doi.org/10.4324/97813 51231879 rowles, g. d. (1981). the surveillance zone as meaningful space for the aged. gerontologist, 21(3), 304–311. https://doi.org/10.1093/geront/21.3.304 schwanen, t., & ziegler, f. (2011). wellbeing, independence and mobility: an introduction. ageing and society, 31(5), 719–733. https://doi.org/10.1017/s0144686x10001467 sheller, m., & urry, j. (2006). the new mobilities paradigm. environment and planning a: economy and space, 38(2), 207–226. https://doi.org/10.1068/a37268 siedlecki, k. l., salthouse, t. a., oishi, s., & jeswani, s. (2014). the relationship between social support and subjective well-being across age. social indicators research, 117(2), 561–576. https://doi.org/10.1007/s11205-013-0361-4 sims, t., reed, a. e., & carr, d. c. (2016). information and communication technology use is related to higher well-being among the oldest-old. the journals of gerontology series b: psychological sciences and social sciences, 72(5), gbw130. https://doi.org/10.1093/geronb/gbw130 stevic, a., schmuck, d., matthes, j., & karsay, k. (2019). ‘age matters’: a panel study investigating the influence of communicative and passive smartphone use on well-being. behaviour & information technology, 1–15. https://doi.org/10.1080/0144929x.2019.1680 732 urry, j. (2007). mobilities. polity press. warr, p., butcher, v., & robertson, i. (2004). activity and psychological well-being in older people. aging & mental health, 8(2), 172–183. https://doi.org/10.1080/13607860410001649 662 whitehead, b. r., & torossian, e. (2021). older adults’ experience of the covid-19 pandemic: a mixed-methods analysis of stresses and joys. the gerontologist, 61(1), 36–47. https://doi.org/10.1093/geront/gnaa126 winstead, v., anderson, w. a., yost, e. a., cotten, s. r., warr, a., & berkowsky, r. w. (2013). you can teach an old dog new tricks: a qualitative analysis of how residents of senior living communities may use the web to overcome spatial and social barriers. journal of applied gerontology, 32(5), 540–560. https://doi.org/10.1177/0733464811431824 ye, s., ng, t. k., & lam, c. l. (2018). nostalgia and temporal life satisfaction. journal of happiness studies, 19(6), 1749–1762. https://doi.org/10.1007/s10902-017-9884-8 zhang, j. (2016). aging in cyberspace: internet use and quality of life of older chinese migrants. the journal of chinese sociology, 3(1), 26. https://doi.org/10.1186/s40711-016-0045-y ihtp, 2(1), 35-50, 2022 cc by-nc-nd 4.0 issn 2563-9269 46 ziegler, f., & schwanen, t. (2011). ‘i like to go out to be energised by different people’: an exploratory analysis of mobility and wellbeing in later life. ageing & society, 31(5), 758–781. https://doi.org/10.1017/s0144686x10000498 ihtp, 2(1), 35-50, 2022 cc by-nc-nd 4.0 issn 2563-9269 47 table 1. sociodemographic variables and distribution among working sample sociodemographic variable n distribution (%) age min: 65 max: 99 mean: 73.3 std. deviation: 5.75 gender female 433 67.3 male 210 32.7 education without post-compulsory training 29 4.5 secondary 192 29.9 tertiary 422 65.6 relationship status single 230 35.8 in a relationship 413 64.2 children no children 113 17.6 has at least 1 child 530 82.4 region / canton of residence* geneva 296 46.0 vaud 165 25.7 other 182 28.3 * in switzerland, canton does not only have a geographical meaning, but also has a political significance. ihtp, 2(1), 35-50, 2022 cc by-nc-nd 4.0 issn 2563-9269 48 table 2. mobility variables and distribution among working sample mobility variable n distribution (%) frequency of talking on the phone during partial confinement every day 346 53.8 several times a week 274 42.6 once a week or less 23 3.6 freq. of digital means use for communication during partial confinement every day 441 68.6 several times a week 167 26.0 once a week or less 35 5.4 freq. of looking out the window during partial confinement every day 234 36.4 several times a week 208 32.3 once a week or less 201 31.3 freq. of looking at photos during partial confinement every day 52 8.1 several times a week 186 28.9 once a week or less 405 63.0 visited museums or expositions on the internet during partial confinement yes 121 18.8 no 522 81.2 searched travel destination on the internet during partial confinement yes 82 12.8 no 561 87.2 note: looking at the variable distribution at first glance (table 2), one may hypothesize that the non-significance of the relationship may be due to the small number of individuals who looked at photos every day (n=52) and the fact that “every day” is the reference category in the regression. however, we also tried changing the reference category to “once a week or less” but the relationship between frequency of looking at photos and life satisfaction did not change. we thus kept the reference category as “every day” to be consistent with the other variables in the regression. ihtp, 2(1), 35-50, 2022 cc by-nc-nd 4.0 issn 2563-9269 49 table 3. linear regression analyses: the relationship between communicative, virtual, and imaginative mobilities, and life satisfaction (n=643) dependent variable: life satisfaction scale model 1: mobility variables model 2: + sociodemographic and personal resources coef. std. error sig. coef. std. error sig. freq. of talking on phone during partial confinement every day ref. ref. several times a week -0.416 0.414 0.315 -2.75 0.405 0.498 once a week or less -2.972** 1.081 0.006 -2.232* 1.051 0.034 freq. of digital means use for comm. during partial confinement every day ref. ref. several times a week -0.033 0.463 0.943 -0.163 0.446 0.715 once a week or less -2.407** 0.880 0.006 -2.069* 0.867 0.017 freq. of looking out the window during partial confinement every day ref. ref. several times a week -0.942* 0.477 0.049 -0.974* 0.461 0.035 once a week or less -0.033 0.481 0.946 0.038 0.471 0.937 freq. of looking at photos during partial confinement every day ref. ref. several times a week 0.341 0.780 0.662 0.374 0.748 0.617 once a week or less -0.026 0.738 0.972 0.134 0.712 0.851 visited museums or expositions on internet during partial confinement (ref: did not do so) -0.614 0.505 0.225 -0.588 0.490 0.231 searched travel destination on the internet partial confinement (ref: did not do so) 0.279 0.589 0.635 0.350 0.572 0.541 male (ref: female) -0.730 0.438 0.096 age 0.052 0.035 0.140 education level tertiary ref. ihtp, 2(1), 35-50, 2022 cc by-nc-nd 4.0 issn 2563-9269 50 secondary -0.552 0.423 0.193 without post-compulsory training 1.271 0.955 0.184 in a relationship (ref: not in a relationship) 1.423** 0.428 0.001 no children (ref: has children) 0.638 0.511 0.213 strong interaction w/ neighbors (ref: minimal to no interaction) 0.739 0.392 0.060 health: average to bad (ref: good health) -2.869*** 0.449 <0.001 prayed during partial confinement no ref. yes 0.789 0.418 0.059 missing 0.729 0.652 0.265 microsoft word revised ce boutmire.docx ihtp, 1(3), 404-417, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 404 older syrian refugees’ experiences of language barriers in postmigration and (re)settlement context in canada souhail boutmira1 1policy studies, ryerson university, toronto, canada corresponding author: s. boutmira (souhail.boutmira@ryerson.ca) abstract this research explores older syrian [from the government-assisted refugee program (gars)] experiences of language barriers in canada's post-migration and (re)settlement context. guided by the ecosystemic model, the qualitative descriptive method was used to describe the experiences of six older adults (three women and three men, 55-years-old and over) living in the greater toronto-hamilton area. results suggest the lack of english proficiency affects refugees' (re)settlement and older adults at risk of abuse. language barriers influence older adult refugees because it limits their ability to navigate the canadian systems, exacerbate their dependency on adult children, increase social isolation, and decrease employment and income opportunities. participants' commitment to learning english comes from their conviction that fluency has an essential role in shaping their experiences in canada. conclusions can help policymakers identify specific interventions to address language barriers among older adult refugees. keywords government-assisted refugees, language barriers, older adults, resilience, syrian refugees background according to pottie et al. (2016), the ongoing war in syria is the most devastating conflict in modern times as half of the population was displaced within the country, and over four million refugees escaped to lebanon, turkey, and jordan. the situation of syrian refugees shows that this vulnerable population needs “targeted health assistance and surveillance” (bazzi & chemali, 2016: 55). older adults from the refugee population are highly in need of help because they have limited mobility, and many live with the trauma that prevents them from adapting to medical care. additionally, older adults' syrian refugees need long term care due to the chronic nature of their illnesses (bazzi & chemali, 2016). however, older syrian refugees find themselves sidelined in chaotic circumstances in refugee camps where most of the assistance is directed toward women and children (khabra, 2017). with the collaboration of international organizations, the canadian federal government responded to its international obligation and welcomed over 55,000 refugees that escaped the syrian civil war (khabra,2017). the country implemented three structurally different programs to facilitate the (re)settlement of syrian refugees; the government assisted refugee (gar) program, privately sponsored refugees (psr), and blended visa office-referred (bvor) (ircc, 2017). each program aimed to resettle some refugees living in refugee camps in adjacent countries to canada before selecting and dispersing them across major cities in canada (khabra, 2017). gars did not come directly from syria to canada, they have ihtp, 1(3), 404-417, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 405 been (re)settled from refugee camps and neighbouring countries (khabra, 2017). upon their arrival in canada, limited language skills affect refugees' ability to access information and services regarding their health, well-being, (re)settlement, civil rights, and political participation. (malcolm, 2017). language barriers influence older adult refugees even more because it limits their ability to navigate the canadian systems, increase their social isolation, decrease employment and income opportunities, among others (stewart et al., 2011; zhou, 2012). these factors, in turn, may create situations of elder abuse and vulnerability, and other mental and physical health problems (canham et al., 2017; jang et al.,2016). the majority of syrian refugees in canada reported having limited english proficiency. statistics gathered by ircc show that 24% of syrian refugees do not know english, while 50% do not exceed level 2 (khabra, 2017). however, these numbers are not homogenous across different (re)settlement programs. for instance, 17% of refugees under the government assistance program have basic english knowledge, while 81% of the psrs reported speaking one of canada's official languages (malcolm, 2017). lack of english proficiency affects refugee’s (re)settlement, and in particular older adults who are at risk of abuse. this study focused on exploring how this affected the settlement of older adult syrian refugees. literature review older syrian refugees often lack language proficiency to support themselves on their own in canada; therefore, they often rely on their family members, neighbours, and others (khabra, 2017). stewart et al. (2011) explain that language barriers can negatively affect multigenerational relationships. children and grandparents do not understand english and have difficulties learning the language in a fast-paced environment. khabra (2017) found that refugees take long to learn and have limited opportunities to practice english, making it harder for them to start fresh and integrate within the community. language barriers and immigration experiences shift the power relationship between older refugees and their family members. since the well-being of immigrants relates significantly to their relationship with their family members (guruge & khanlou, 2004), older adults' inability to communicate increases their social isolation and loneliness inside and outside the home (lai, 2016; guruge et al., 2015). at the community level, active community engagement provides an opportunity for older immigrants and refugees to build new friendships. active membership in the neighborhood can nurture their sense of belonging in their new place of residence (gierveld et al., 2015). however, brown et al. (2005) explains the sense of belonging to the community evolves when both the newcomer and community members are predisposed to think of their relationship as positive and beneficial. lacking the medium to engage in exchanges with others prevents the local community from including older immigrants, which may lead to marginalization that can be interpreted as abuse on the other (zhou, 2012). language barriers prevent refugees and immigrants from participating in social events. speaking neither of the official languages in canada results in their exclusion from the community and society (ahmed et al., 2017; zhou, 2012). active community engagement provides an opportunity for older refugees and immigrants to build new friendships. communication with service providers is limited due to inadequate interpretation services (wayland, 2006). community services, especially community health clinics, are committed to providing interpreters, but most available services report limited funding and ad hoc budgets to finance their interpretation services. schools and agencies unable to offer adequate interpretation services often rely on bilingual staff and family members for help. unfortunately, reliance on family members puts older refugees at risk of being misunderstood as explained by stewart et al. (2011): "service providers indicated that family members who acted as interpreters sometimes did not correctly convey information between service providers and seniors" (stewart et al. 2011: 24). at the societal level, language barriers exclude the individual from social and health services (li, 2016), which in turn, decreases the immigrant's disposition to adopt new norms an undermines ihtp, 1(3), 404-417, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 406 their sense of belonging (chow, 2007). older refugees' limited access to care due to health coverage and communication issues result in unmet needs that further deteriorates their health conditions (mckeary & newbold, 2010). for example, newbold and willinsky (2009) report that some physicians reject older refugees even when they have an urgent need for care because of substantial time and expenses associated with their age-related health needs (2009). although syrian refugees benefit from the interim federal health program (ifh), language barriers pose a problem because refugees must apply to the program to become eligible (mckeary & newbold, 2010). completing administrative tasks related to the refugees’ (re)settlement process requires filling out forms and navigating a complex bureaucratic system. older immigrants and refugees without limited educational level and language abilities find the experience extremely challenging. thus, limited english proficiency represents a significant risk for mental and physical health (canham et al., 2017). purpose and research question there is limited literature that examines, in-depth, the experiences of older adult refugees, sponsored by the government with language barriers. this study explored older syrian refugees' experiences of language barriers in the post-migration and (re)settlement context in canada. this study highlighted the influence of language barriers on older syrian refugees from the governmentassisted program. gars have been reported to have the least language skills among syrian refugees (malcom, 2017). the primary purpose of this qualitative study is to identify common themes of different aspects of the research topic that can be discussed qualitatively (patton, 2000). the study addressed the main research question: what are older syrian refugees’ gar experiences of language barriers after their (re)settlement in the greater torontohamilton area? theoretical approach this study was guided by the ecosystemic model (guruge khanlou, 2004). the ecosystemic model has been used to study and analyze trauma and resilience among families and older adult refugees and immigrants (goodman et al., 2017; hynie et al., 2013; vesely et al., 2017). the ecosystemic framework can help explain the unique circumstances that shape older adult refugees’ lives after their migration. the framework is suitable for this study because it can help explore the range of factors that influence the older refugee experience including family, community, and institutional stressors. these stressors can act together and separately to prevent refugees from acquiring language proficiency (ledi, 2004). bobes and rothman (1998) outline six fundamental assumptions to the ecosystemic approach that are found to impact immigrants’ and refugees’ experiences. first, lived experiences influence the individuals themselves and others around them. therefore, any assistance must take into consideration the context in which refugees evolve. refugees leave their country of origin suddenly; they leave behind their family, friends, wealth and memories to come to an unknown environment where everything is different. they have to learn new routines and develop new knowledge and behaviors that are unique to their new environment. second, change in one’s family membership will affect the entire system. some older adult syrian refugees came to canada accompanied by their spouses, children and sometimes parents. each member’s experience differs greatly from the rest of the family because of age, gender, and personal objectives. for instance, a child will have a completely different perspective about language barriers because they have to use it in schools and playgrounds. older adults often lack the practice component that can catalyse their need to learn english. third, the ecosystemic model highlights the assumptions that leads to hegemonic thinking that, refugees are all the same. bobes and rothman (1998) explain that “the focus is upon circular causality rather than linear thinking” (p.7) because many stressors overlap at multiple levels of complexity to affect refugees differently in any given situation. fourth, interactions between family members relate to or are affected by the present conditions. ihtp, 1(3), 404-417, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 407 current situations that dictate the interrelationships among members of the same household offers a suitable environment for each member to gain / develop new unique qualities. fifth, the family interrelationships change over time giving rise to new interactions that result in new interrelationships. older adult syrian refugees reimagine or re-envision their relationships with their spouses and children. the change can generate a shift in the power relationship that can undermine the role of older adults in the house. sixth, adapting to the power shift can give place to tension and conflict between family members in ways they did not experience in the past. ledi (2004) explains that conflicts at the family level are necessary to the successful implementation of adaptive family systems. she argues that “to achieve homeostasis (steady states), the families struggle at maintaining equilibrium (ledi, 2004: 19). methods design there is limited literature that looks in-depth into government assisted older adult syrian refugees' experiences with language barriers. qualitative research helped develop a contextualized understanding of people’s experiences to close the gap between older adult syrian refugees' linguistic needs and available services (vaismoradi et al., 2013). the distinctiveness of the descriptive method allowed a direct exploration of the phenomenon in ways that can stimulate the readers understanding of the gars lived experiences. qualitative descriptive method (sandelowski, 2000) helped describe the experiences of syrian older adults with language barriers at the macro, meso, and micro levels. additionally, descriptive finding clarified how policy makers identify and classify immigration and (re)settlement related laws (sandelowski, 2010). the method goes beyond the simplistic description of data that explains different patterns of the human behaviour by “loosening the bonds that tied them to rigid methodologies” (thorne et al., 1996: 172). recruitment and data collection ryerson university research ethics board approval was received. six participants were recruited, three women and three men, as they fit the study’s inclusion criteria: 1) came to canada under the gar program, 2) are 55 years old and over 3) live in the greater toronto-hamilton area. since no public listing of the targeted population is available, snowballing technic was used to facilitate access to the participants (sandford, 2015); starting at the wesley urban ministries because of their experience (re)settling different categories of government assisted refugees. participants came to canada in 2015 and 2016, they were interviewed in arabic as per their request. i relied on the extensive experience accumulated while conducting interviews in arabic for the immigration health research centre under the supervision of a senior researcher. participants were asked 10 to 12 questions about their experiences of language barriers in the context of post-migration and (re)settlement in the greater toronto-hamilton area with special attention to their experiences in relation to the following four themes. the interview themes were: 1. experience with the process of learning english in canada? 2. experience with language barrier at the family level (e.g., while living with children)? 3. experience with language barrier at the community level (e.g., grocery shopping, at the bank, in the neighborhood)? 4. experience with language barrier at the institutional level (e.g., access to information, employment, healthcare)? results the result section has been structured in accordance with the interview themes. first, the participants described their experiences with language classes after their (re)settlement in canada. second, they commented on their experiences of language barriers at the family level (e.g., relationship with adult children). third, they highlighted the aspects of their experiences with language barriers at the community (e.g., neighborhood, grocery shopping and banking). finally, the participants explained their ihtp, 1(3), 404-417, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 408 experiences with language barriers at the macro level (e.g., employment and access to healthcare). experience with language acquisition the beginnings of english classes all participants completed a language assessment test as soon as they arrived in their respective cities. according to the test results, they were given a score that indicates their proficiency level. all participants registered in their respective assigned classes. they started going to classes within the first few weeks of their arrival. they showed a lot of enthusiasm when they were talking about their initial experience of learning english in canada. one participant stated that he drove 25 kilometers to get to school. another participant said that english assessment test was the first thing he thought about as soon as he landed. a 70-yearold woman shared the details of her first day in canada: i came to canada, i did my english assessment the next day, i got level 1, i visited the school … the same day. the lady asked if i wanted full-time or part-time. i did not know what to say, i said full-time. (70, female, in canada since 2015) learning progress and length of study four participants (two men and two women) continued to attend language classes without interruption, for four consecutive years after their arrival. at the time of the study interviews, three participants were registered as full-time and one as part-time. however, most participants did not feel comfortable moving up to advanced levels. one woman indicated that she attended classes fulltime for one year; her teacher encouraged her to move on to the next level, but she did not have enough courage to do so. after one year, she joined the second level but asked not to move her to the next level until the following year. she explained: i kept saying i don’t know much, and i need to practice more, but since on paper i am doing good, they want me to continue. the next semester i found myself in level 4. if you think about it, i am good with answering questions on paper, but i have a problem finishing a conversation. (70, female, in canada since 2015) a man had a different experience attending classes. he stated that it was a good idea to start from level zero because it helped refresh his memory. however, he had difficulties adapting to the slow pace of the learning process. he wanted to learn english at the academic level because he wanted to go back to college. the esl program gave me the basics, but i needed more. i need to read articles and write long essays. i finished level 5. i heard about the academic upgrading program. i did math and english reading and writing tests. at the time my mother was here with me, so i had more freedom. i used to go to high school in the daytime and esl in the evening until i finished level 6. (56, male, in canada since 2015). multigenerational and online classroom all participants were pleased to see students from different ages attending language classes with them. one participant explained that the youth are important in the classroom because they can motivate older adults to learn faster. however, she argued that older adults do not learn at the same pace as young students because older adults have other responsibilities. she indicated that as soon as she finishes classes, she thinks about what to cook for her family and when her husband’s next appointment is. younger adults have more time to practice, therefore they can learn faster. another participant had a different experience. she expressed her desire to be around younger students because it made her remember when she was a teacher back home. she expressed that she is happy to help the youth from the gar program because she knows they have a literacy program. she explained: all my classmates are younger than me, they all love me. i like to be around young people. they have difficulties learning english, especially grammar. i found english grammar easy because i taught arabic back home. arabic grammar is similar to english. i try to explain to them sometimes in arabic, they were very happy with me. (70, female, in canada since 2015) ihtp, 1(3), 404-417, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 409 the recent covid-19 pandemic forced many older adults to self-isolate for a long period of time. while youth were able to adapt to online learning, older adults experienced challenges with their learning process at multiple levels. for instance, older syrian adults may not be able to afford to pay for internet connection and a working laptop or desktop. one participant explained that her welfare combined with her son’s disability benefit were their only source of income. second, older adults were not prepared for the sudden and complete move toward online classrooms. two participants said that they stopped taking classes as soon as schools closed. others required the help of their children to navigate the online platform and submit their homework. a 70-year-old participant that lives with her husband and two children explained: …online learning is difficult for me and i think language barrier has something to do with it. i have to call my son all the time to fix it for me. he gets upset; i understand him though, it happens often. i decided not to take any classes next semester if the only option is online classes. (70, female, in canada since 2015) multicultural classrooms all participants are proud of becoming a member of a multicultural community where diversity is recognized and celebrated. they found that people are genuinely interested in getting to know about their traditions. a female participant said that she was closer to her columbian friends than other arabic speaking students. another participant said that students asked her if she was muslim or christian; they were surprised to see a muslim woman without a scarf. older women felt relieved when teachers accommodated their needs. one participant explained that the administration gave special instructions not to schedule any tests during the month of ramadan. she said that even back home they used to have exams during ramadan (i.e., fasting month) and go back to work the next day after eid (i.e., celebration of the end of fasting). she commented: as an arabic woman, i feel like people and institutions respect our tradition and culture a lot. i feel very comfortable here. one participant referred to his religious background to advocate for cultural diversity. he explained that his religious beliefs forbid him from discriminating people because of their race. he continues to say: ..... our religion (islam) tells as to seek knowledge from the crib to the grave, it encourages us to travel anywhere to learn from other civilizations…so here i am learning in canada why language learning was important to them one participant said that she was eager to start quickly because it is her responsibility to learn the official language of the country that adopted her and her family. another participant said that he walks 40 minutes a day to go back and forth from his school without interruption for the last three years because he wants to learn, and he enjoys going to class. he said that he qualifies for free door to door transportation because of his disability but he refuses to take advantage of it. he said: i walk 20 min every day to go there. i do not take the bus; they can get me special transportation to get me to and from school, but i told them i don’t need it. it does not matter for me if it is summer or winter, i always go to school. i have been doing it for three years because my objective is to learn english. language is a must, the minimum we can do here is to learn the language. (84, male, in canada since 2015) one participant explained that she wants to learn english because she wants to explore her new country. she wants to learn about its geography and history and to know about the different cultures and traditions. she wants to communicate with people and build friendship. more importantly, she does not want to be dependent on her children anymore. she reported: i want to run my errands without having to ask for help. that’s how i think. for now, it’s still my children that take care of me, my son is always with me when i go to the grocery store, when i go to the bank and so on (70, female, in canada since 2015). ihtp, 1(3), 404-417, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 410 experience with language acquisition language barriers living with children most participants are partially or completely dependent on their children. they all had adult children living with them in the same apartment. all participants converse with their children in arabic with some exceptions where they use english for practical purpose. i asked one participant about instances where he feels comfortable speaking english with his children. he said that he does so when he has an english lesson related question. he said that he speaks some english when only close family members are present. for example, he said that he can ask his children to clarify a word he heard on the news. he said that sometimes he tries to discuss the story behind the movie or tv series they watch late at the night. another participant said that she tries to entice her daughter to help with household work by asking her in english. she practices english with her daughter when they are preparing for dinner. for example, she tries to remember phrases such as, “help me clean dishes please” and “help me organize the room please”. she acknowledges that her daughter acquired the language much faster than she did. she specified that she registered her daughter in an english-speaking private school even before she knew they were coming to canada. although i have some background in english because we learn it in middle school a little bit. my daughter is doing much better because she is young and can learn faster. also, she knew some english before coming to canada. she speaks fluently, she just graduated from college. (64, female, 2016) experience with language barriers at the community level neighbours and community members all participants agreed that language barriers lead to their social isolation at the community level. one participant lives with her husband and two children; she suffered a lot from isolation because of language barriers. she said that she still has difficulties four years later because she cannot express herself in english. she cannot ask people in the street questions because she does not understand slang language. she explained “i lack practice so my ear cannot get used to the language”. a male participant explained that he feels isolated because he has difficulties asking his neighbours simple questions that can spark a discussion. he said: my neighbor told me that his son is ill. i met him a few days later, i wanted to ask him about his son’s health, but i couldn’t. and even if i knew what to say i will not be able to understand his answer. that’s my problem. (84, male, in canada since 2015) one participating woman tried to combat their language barriers and social isolation by proposing syrian food to her neighbours. later, the food sharing became the foundation of a solid relationship that evolved through time as one woman explained: i just want to meet some people or a family to practice english. i wish if older adults have a program where they can meet other families. i can cook for them as far as i can practice english. i am not afraid to express myself in english. i know that i can understand key words that will help me carry on the conversation. i just want to find people to practice with. (72, female, in canada since 2015) other participants chose volunteering to integrate in the community. a female participant went to a nursing home to help in the kitchen. she told me that she was serving older adults’ food, but she did not find the experience helpful because she could not practice english with the residents: my task was to serve, so i had to do it fast, i did not sit down with the older adult to have a conversation (64, female, in canada since 2015) experience with language barriers at the institutional level information and administration i asked participants about their experience with language barriers at the institutional level. ihtp, 1(3), 404-417, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 411 participants, including the one fluent in english, acknowledge that language is a major barrier to their relationships with institutions. they experienced anxiety when they perform administrative tasks, take phone calls, book doctors’ appointments, and meet with government services. they require the help of their children, (re)settlement case managers and interpreters to complete forms related to their status in canada, to renew their medical cards and yearly taxes. one female participant told me that she was filling her taxes wrong because she did not understand if she can claim her medical expenses. she said that she did not get any refund in two years, so she decided to rely on her son to deal with any issues with canada revenue agency. her serious tone shows how anxious she was about causing a problem with public administration: health concerns along with any government related matters are no joke. i do not mess with that. i won’t know how to do it on my own. i was doing my taxes wrong for the last couple of years, so i did not get any refund. (70, female, in canada since 2015) all participants mentioned that they struggle with access to information because of language barriers. i asked them how they get their local and national news updates. all participants admitted not knowing much about what is going on in ontario, canada, and the greater torontohamilton area. they did not read local newspapers, listen to radio stations, or watch mainstream media channels because they cannot understand the language. one participant’s experience with access to information is relevant because it relates to finding the appropriate language classes. he explained: the first two years were so hard for me and my family. i needed information about english language programs that will allow me to access universities and colleges. all i needed was the yearly program catalogue, but even that was hard to get because we did not know. seriously, access to information was a major issue in the first couple of years. (56, male, in canada since 2015) all participants are using social media instead. they find social media very helpful because they can translate the information with a simple click. one participant explained with astonishment: i know the news through my son or my smartphone. if i do not know something, i translate it using my smartphone. now social media feeds include a translation button that makes translation very handy. (84, male, in canada since 2015). another female participant said that she uses facebook and youtube channels to get information because she cannot find news in arabic. she said that she watches cp24 from time to time if there is something major happening in the country. she said that she does not understand everything, but she gets a general idea. language barriers, employment and academic credentials one participant had great hopes of finding a job as an interpreter as soon as he landed simply because his profession is in demand. he explained he was asked to complete a licensing procedure despite his professional experience of 20 years at the united nations. he said in a desperate voice: i did not think that language is going to be a barrier. i was dreaming that i will be using english and other languages as soon as i come to canada. can you believe that someone with my kind of experience and fluent in english can find difficulties finding a job in canada. i realized later that other factors such as age, i am 68 years old now, may block access to employment for refugees. the language did not help me at all. another male participant planned to acquire a qualified job in canada had a similar experience. unlike the first participant, he does not speak english and he does not have any international working experience. however, he knew that working before mastering the language is a mistake that can have drastic shortand long-term consequences. he wants to work in accounting because he was a math teacher and entrepreneur back home. he was hoping to know about the process of academic upgrading during his first year. he argued that the whole idea behind credentials and canadian experience should have been explained as soon as they arrived. he explained: ihtp, 1(3), 404-417, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 412 …i think the concept of going to school and gaining canadian experience should have been introduced early on in the (re)settlement process. the first few months are essential for refugees’ stability, i heard that some of them are dealing drugs and getting killed. the arabic community and human right organizations should plan sensitization session to explain to refugees the benefits of learning the language and going to school in the long term. (56, male, in canada since 2015) language barriers and access to healthcare participants except one reported some level of stress and anxiety when dealing with healthcare providers. they all request an interpreter when they have a doctor’s visit. however, they prefer to be accompanied by a family member instead because of privacy issues. also, they want their children to handle their conversations with health professionals to make sure they do not forget any important information. one female participant who takes care of her husband living with a disability explained that she takes health concerns very seriously. she does not have enough confidence that she can discuss a health-related matter in english. she said: although i worked in healthcare in syria, but the language barrier is a major problem for us. we usually get an interpreter when we see the doctor. health concerns are different than running errands or doing groceries, i have to make sure i understand everything. (64, female, in canada since 2016) the service is available for free and can be face to face or over the phone. all older adults are aware of available healthcare services, but they prefer to have someone they know accompany them to complete the visit. participants with children insist on having their children be present at the visit because they don’t want to miss any important information. one participant prefers that to have his son with him because he can help him remember what the doctor’s said later. he explained: i prefer my son to be with me for my doctor’s appointment. an interpreter comes for few minutes and leaves, with my son, i can ask him once and twice until i am sure” (70, female, in canada since 2015) a female participant argued that she uses interpretation services when she has a routine check-up. however, she insisted on the presence on a close family member when she must deal with a complicated matter. she explained: it’s good to have a translator because everyone in my family is too busy. however, it is different with my little son because he has brain complications, so he needs to have someone fluent to assist the surgeons with any clarification. i have difficulties understanding the situation because i do not speak the language. my granddaughter came to assist once but she is waiting for a baby now, she cannot come. (72, female, in canada since 2015) all participants have an arabic speaking family doctor. these doctors were assigned to them upon their arrival four to five years ago. all participants found that having an arabic speaking family physician very important as one female participant stresses, “my family doctor is arabic speaking, he was a syrian md now she is egyptian, i won’t go to the doctor if she/he is not arabic speaking.” (70, female, in canada since 2015). participants’ answers made me think about the availability of arabic speaking doctors. one participant complained about the wait time when he has an appointment. another participant stated that his family doctor never answers his call. he explained that the problem of dealing with an arabic speaking doctor is accessibility. he said that his family doctor refused to see him because he was busy which made him question the effectiveness of the canadian healthcare system. he explained: the problem we have with arabic speaking doctors is availability. my family doctor has over 2000 patients to take care of and his time is very limited. my question is why a family doctor would accumulate 2000 patients in the first place. if i did not have a language barrier, i could have switched to an english speaking one. (56, male, in canada since 2015) discussion ihtp, 1(3), 404-417, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 413 debeljacki (2007) explains that governmentassisted refugees have the lowest graduation rates as compared to economic and family class immigrants. he argues that gars have difficulties completing the program because they require more individual attention in the classroom than other students (debeljacki, 2007). this study’s participants explained that language classes became inadequate in meeting their needs after the first or second year of their arrival to canada. they acquired basics skills, such as sentence structure and vocabulary during the first year, then the formal environment did not motivate them to learn more which explains why they did not move up to advanced levels. they kept going to classes because it mainly helped them overcome their social isolation. according to the literature, communication difficulties minimize social contacts and interactions, and increase social isolation and loneliness (jang et al., 2016; van baarsenet al., 2001). similarly, the study’s participants showed a high degree of dependency on their children. older adults, who are syrian gars, are sensitive to the pressure that they are putting on their children. language barriers exacerbate their vulnerabilities even more when they become aware that their children may not be available for a long period of time. the combination of financial and language barriers creates a form of dependence that keep older adult and their children in constant struggle to maintain their family stable (ledi, 2004). debeljacki (2007) linked language classes dropping rates to financial hardship. depending on the language program, available resources may offer the student free bus tickets to attend classes but not all programs cover such costs. debeljacki explains that gars must attend linc classes every day to receive a one-way transportation ticket. most gars cannot afford to pay for the return ticket (debeljacki, 2007). similarly, older adult syrian refugees lacked the means to attend classes regularly because they could not afford to pay for transportation while living on a strict budget. most participants received welfare and lived with a partner or a child that requires constant caregiving. they expressed their interest to attend older adult programs organized by community centers and public libraries. they prefer to meet with other older adults within the community to share their experiences while practicing the language. however, programs that combine activities with language learning do not qualify for free transportation services or subsidies, forcing older adults to discontinue attending the program only weeks after they start. literature (debeljacki, 2007; van baarsen et al. 2001) shows that the canadian government provides limited (re)settlement funding for service providers to address barriers to employment, housing and language acquisition for newcomers' immigrants and refugees. service providers’ partnerships with government institutions became contract-based, competitive, short-term, and regulated (evans et al., 2005). limited funding impacts older adult refugees’ learning process, which in turns, may increase their loneliness and social isolation. the findings are in accordance with scholars and researchers such as wayland (2006) who recommend additional funding for age-specific programs that are sensitive to the older adults' cognitive capabilities, adequate to their daily needs, and culturally appropriate. older adult syrian refugees carry the double burden to prove they were worth the sacrifice of the canadian society. they want to learn the language to become active members and give back to the community that welcomed them. according to wayland (2006), language barriers occurring at multiple levels influence refugees’ identities. for instance, they can influence older refugees even more because it limits their ability to navigate the canadian systems, and decrease employment and income opportunities (stewart et al., 2011; zhou, 2012). accordingly, weak language abilities affect employment opportunities. only 10% of gars were able to secure a job since they arrived in canada compared to 53% of psrs (ircc, 2017). man (2004) observed language program intakes and determined that immigrants and refugees were placed in part-time programs in community centres and local schools because the province eliminated the living allowance and restricted language programs to newcomers. man argues that the lack of resources to acquire language proficiency and the absence of adequate programs forces immigrant women to take “menial positions” (p142). this study’s findings are in line with man’s conclusions except that in this study, ihtp, 1(3), 404-417, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 414 men too are taking menial positions that undervalue their competencies. vijay (2007) conducted a study to highlight the discrimination facing south asian immigrant and refugee women with low language skills. her study can help my discussion because she provides interesting information about language classes that include different age groups. she argues that women felt trapped because of a series of structural barriers that undermine their abilities to attain high language proficiency levels. more importantly, vijay’s study highlights that western hegemony impacts immigrants and refugees’ newcomers. she concludes that the purpose of the esl program is to help women navigate and adjust to their new environment while the undisclosed objective is to perpetuate the homogenize view of the woman refugee. likewise, this study’s participants complained about lack of information about available alternatives to formal language programs. they found that language barriers prevent them from accessing information in timely manner. lack of information or misinformation may create situations of delay in accessing services that can result in frustration and demotivation. consistent with the literature, language difficulties also threaten refugees’ privacy, especially when accessing healthcare services (vijay (2007); man (2004)). the literature shows that women can share their health concerns and symptoms with their family doctor, but not necessarily in the presence of an interpreter, especially where there is a small community of arabic speaking people (ahmed et al., 2017). mckeary and newbold (2010) study on older adult refugees’ access to healthcare services in canada showed that access to health professionals is further complicated by low literacy levels because describing symptoms and understanding diagnosis’ technical jargon require more than basic english skills. the study discussed the risk of assigning family doctors based on language and ethnic backgrounds. similar to my findings, the study shows that sometimes family doctors refuse to see their patients because of time constraints. the experience of the women who participated in my study takes different dimensions because they are women, and they have the responsibility to care for a close family member. they find themselves stuck between their caregiving duties, the household work such as cooking and cleaning, and the need to build relationships with their neighbours and community members. they must accompany their family member to the hospital on weekly basis. they need to arrange special transportation, meet with healthcare professionals, coordinate between service providers and the family member to complete any administrative applications. most participants reported some sort of dependency on their children, case workers and interpreters. however, the absence of support did not stop them from them carrying on with their responsibilities with high level of commitment and agency. recommendations based on the study findings, the focus should be on access to information about available language programs and options, as well as social isolation. the following recommendations may be helpful to policy makers and outreach program designers. first, older adults have different needs that dictate what kind of language program they may need. creation of a newcomer program to provide tailored information about available language classes would support older adult syrian refugees. the program could help guide older adult refugees adapt their learning to their individual objectives. the program could also provide an overview of available fulltime, part time classes in formal and informal classrooms. in addition, the program could inform older adult refugees about options to upgrade their academic credentials and pathways to academia as soon as they arrive in canada. second, a newcomers’ outreach program to promote community engagement while learning english would be important. the program could be created to help older adults access information about available activities at the community level. a coordination between the case manager responsible of the refugees first year of (re)settlement process and other outreach program is recommended. third, social isolation should be addressed at the local level. learning while socializing at the neighborhood level can solve the problem of older adults that cannot leave home for a long period of time because of caregiving responsibility. community leaders can coordinate home based ihtp, 1(3), 404-417, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 415 tutoring activities tailored to the need of older adult refugees’ unique circumstances. fourth, most older adults are on welfare with limited financial capabilities. their income can barely cover the cost of rent and monthly groceries. i recommend providing older adults with transportation vouchers to help cover the cost of transit to attend formal and informal english classes. conclusion age has a socially constructed meaning that generates different expectations at different stages of one’s life. while society sees life as linear, from a period of schooling to work, building a family, then retiring, refugees’ experience is non-linear because they need to re-establish themselves in the new country of residence. older refugees who do not speak english or french demonstrate more significant vulnerabilities than english-speaking older adults in canada (jang et al., 2016; pottie et al., 2008). the research results show that limited language abilities undermine refugees’ ability to build enduring friendships and increase their dependence on their children. the difficulty increases when language barriers exacerbate their opportunity to access age-specific communitybased programs. in addition, language barriers complicate their ability to obtain helpful information to improve their employment experiences and navigate a complex healthcare system. references ahmed, a. (2016). maternal depression in syrian refugee women recently moved to saskatoon. agnew, v. (2018). language matters. in race and racialization: essential readings (pp. 607622). canadian scholars. bazzi, l., & chemali, z. (2016). a conceptual framework of displaced elderly syrian refugees in lebanon: challenges and opportunities. global journal of health science, 8(11), 1-8. bobes, t., & rothman, b. (1998). the crowded bed: an effective framework for doing couple therapy. ww norton & co. canham, s. l., battersby, l., fang, m. l., wada, m., barnes, r., & sixsmith, a. (2018). senior services that support housing first in metro vancouver. journal of gerontological social work, 61(1), 104-125. evans, b., richmond, t., & shields, j. (2005). structuring neoliberal governance: the nonprofit sector, emerging new modes of control and the marketisation of service delivery. policy and society, 24(1), 73-97. gierveld, j. d. j., van der pas, s., & keating, n. (2015). loneliness of older immigrant groups in canada: effects of ethnic-cultural background. journal of cross-cultural gerontology, 30(3), 251-268. goodman, r. d., vesely, c. k., letiecq, b., & cleaveland, c. l. (2017). trauma and resilience among refugee and undocumented immigrant women. journal of counseling & development, 95(3), 309321. guruge, s., & collins, e. m. (eds.). (2015). working with immigrant women: issues and strategies for mental health professionals. centre for addiction and mental health. guruge, s., & khanlou, n. (2004). intersectionalities of influence: researching the health of immigrant and refugee women. cjnr (canadian journal of nursing research), 36(3), 32-47. guruge et al. (2017). creating a user-centric toolkit for service providers to address elder abuse in immigrant communities in ontario. submission to the ministry of senior adults. harrison, b. (2000). passing on the language: heritage language diversity in canada. canadian social trends, 58, 14-19. heise, l. l. (1998). violence against women: an integrated, ecological framework. violence against women, 4(3), 262–290. hynie, m., mcgrath, s., bridekirk, j., oda, a., ives, n., hyndman, j., ... & mckenzie, k. (2019). what role does type of sponsorship play in early integration outcomes? syrian refugees resettled in six canadian cities. refuge: canada's journal on refugees/refuge: revue canadienne sur les réfugiés, 35(2), 3652. immigration, refugees, and citizenship canada (ircc). (2017), march 1st, 2019march 30th, 2019”. accessed at ihtp, 1(3), 404-417, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 416 http://open.canada.ca/data/en/dataset/01c8 5d28-2a81-4295-9c064af792a7c209 jang, y., yoon, h., park, n. s., & chiriboga, d. a. (2016). health vulnerability of immigrants with limited english proficiency: a study of older korean americans. journal of the american geriatrics society, 64(7), 14981502. jang, y., park, n. s., chiriboga, d. a., yoon, h., ko, j., lee, j., & kim, m. t. (2016). risk factors for social isolation in older korean americans. journal of aging and health, 28(1), 3-18. lai, d. w., & leonenko, w. l. (2007). correlates of living alone among single elderly chinese immigrants in canada. the international journal of aging and human development, 65(2), 121-148. lebrun, a., hassan, g., boivin, m., fraser, s., & dufour, s. (2015;2016;). review of child maltreatment in immigrant and refugee families. canadian journal of public health, 106(7), es45-es56. doi:10.17269/cjph.106.4838 ledi, e. (2004). family counseling in an ecosystemic framework. malcom, c. (2017, june 12). privately sponsored syrian refugees more likely to find work: document. toronto sun. retrieved july 3, 2017. man, g. (2004, june). gender, work and migration: deskilling chinese immigrant women in canada. in women's studies international forum (vol. 27, no. 2, pp. 135-148). pergamon. mckeary, m., & newbold, b. (2010). barriers to care: the challenges for canadian refugees and their health care providers. journal of refugee studies, 23(4), 523-545. mwarigha, m. s. (2002). towards a framework for local responsibility. toronto: maytree foundation. nelson, r. h., mitrani, v. b., & szapocznik, j. (2000). applying a family-ecosystemic model to reunite a family separated due to child abuse: a case study. contemporary family therapy, 22(2), 125-146. newbold, k. b., & willinsky, j. (2009). providing family planning and reproductive healthcare to canadian immigrants: perceptions of healthcare providers. culture, health & sexuality, 11(4), 369-382. pottie, k., greenaway, c., hassan, g., hui, c., & kirmayer, l. j. (2016). caring for a newly arrived syrian refugee family. cmaj, 188(3), 207-211. thorne, s., kirkham, s. r., & macdonald-emes, j. (1997). focus on qualitative methods. interpretive description: a noncategorical qualitative alternative for developing nursing knowledge. research in nursing & health, 20, 169-177. sandelowski, m. (2000). whatever happened to qualitative description? research in nursing & health, 23(4), 334-340. sandelowski, m. (2010). what's in a name? qualitative description revisited. research in nursing & health, 33(1), 77-84. shields, j., & alrob, z. a. (2020). covid-19, migration and the canadian immigration system: dimensions, impact and resilience. siemiatychi, myer. (2015). continuity and change in canadian immigration policy. in h. bauder & j. shields (eds.), immigrant experiences in north america: understanding settlement and integration. (pp.93-117). toronto: canadian scholars press stewart, m., shizha, e., makwarimba, e., spitzer, d., khalema, e. n., & nsaliwa, c. d. (2011). challenges and barriers to services for immigrant seniors in canada: “you are among others, but you feel alone”. international journal of migration, health and social care, 7(1), 16-32. van baarsen-heppener, b., snijders, t. a. b., smit, j. h., & duijn, m. a. j. (2001). lonely but not alone: emotional isolation and social isolation as two distinct dimensions of loneliness in older people. educational and psychological measurement, 61(1), 119135. doi:10.1177/00131640121971103 vesely, c. k., letiecq, b. l., & goodman, r. d. (2017). immigrant family resilience in context: using a community-based approach to build a new conceptual model. journal of family theory & review, 9(1), 93-110. waller, m.a. (2001). resilience in ecosystemic context: evolution of the concept. american journal of orthopsychiatry, 71(3), 290–297. ihtp, 1(3), 404-417, 2021 cc by-nc-nd 4.0 issn 2563-9269 ihtp 417 wayland, s. v. (2006). unsettled: legal and policy barriers for newcomers to canada. law commission of canada (pottie et al., 2016) zhou, y. r. (2012). space, time, and self: rethinking aging in the contexts of immigration and transnationalism. journal of aging studies, 26(3), 232-242. issn 2563-9269 44 invisible diaspora: a scoping review of migrant caregivers’ social integration trajectory oona st-amant1, mandana vahabi1,2, josephine pui-hing wong1,3,4, bukola salami5, kenneth po-lun fung6,7, jovana miholjcic8, valerie tan1 1daphne cockwell school of nursing, ryerson university, ryerson university, toronto, ontario, canada; 2ices central, toronto, ontario, canada; 3dalla lana school of public health, university of toronto, toronto, ontario, canada; 4graduate program in environmental studies, york university, toronto, ontario, canada; 5faculty of nursing, university of alberta, edmonton, alberta, canada; 6asian initiative in mental health, toronto western hospital, university health network, toronto, ontario, canada; 7department of psychiatry, university of toronto, toronto, ontario, canada; 8university health network, toronto, ontario, canada corresponding author: o. st-amant (ostamant@ryerson.ca) abstract introduction: the canadian caregiver program, initiated in 1992, functions to conceal the inadequate public policy and programs on child and elder care in canada. consequently, migrant caregivers have become an invisible diaspora filling a domestic labour gap with few protections. aim and methods: this scoping review aims to identify the systemic barriers that undermine social integration of migrant caregivers. we searched ten publication index databases from 2001-2020. we retrieved 1,551 articles, after accounting for exclusion criteria, 22 peer-reviewed articles were selected for this review representing migrant women across canada who are and/or were part of the program. results: four key barriers were identified: economic exploitation, deskilling and downward occupational mobility, asymmetrical accountability, and social isolation. conclusion: discriminatory policies and hidden exploitative employment practices of the canadian caregiver program perpetuate a cycle of marginalization. this review also found that community support groups and alliances function to promote resilience among migrant caregivers through community advocacy. keywords social integration, migrant caregivers, caregiver program funding source this work was funded by cihr knowledge dissemination grant from the institute of gender and health. introduction modern day domestic care work is modelled after historical colonization, displacement, and minority marginalization practices (castles & miller, 2009; parrenas, 2012). care work is gendered and racialized resulting in, exploitation, marginalization, and social exclusion of migrant caregivers (cohen, 2000; d’addario, 2013; salami & nelson, 2014; spitzer et al., 2009). systemic racism has meant employers reduce workers to their preconceived racialized traits, rather than recognizing their skill and knowledge. for instance, compared to lighter skinned women, darker skinned women are often assigned the least desirable ihtp, 1(1), 44-60, spring 2021 cc by-nc-nd 4.0 work (bakan & stasiulis, 2012). this process can be observed in canada’s caregiver program where filipino women are relegated to providing care for canadian families in their homes (callon, 2017). the canadian caregiver program, initiated in 1992, functions to divert attention from the lack of universal childcare and inadequate health and social care policies to designed to address the unmet needs of its growing elderly population (atanackovic & bourgeault, 2014; chowdhury & gutman, 2012). the program allows canadians to hire highly educated and skilled temporary foreign workers for minimum issn 2563-9269 45 wage. in a review of the literature, spitzer et al. (2008) found that 90% of migrant caregivers accepted in the caregiver program are women, with the vast majority coming from the philippines and a growing number from haiti as well as african, latin american, and asian countries (hanley, larios, & koo, 2017). most are highly skilled graduates from nursing and teaching, between the ages of 25-44 years (kelly, park, de leon, & priest, 2011). according to tungohan (2013), migrant women face a growing challenge: they have limited economic power in their home countries which forces them to migrate in support of their families, and yet their ability to actively care for their own children is restricted by geographical distance. as a result, migrant women are forced to sustain transient, low wage employment in countries like canada, deepening loss of identity and exploitation (parrenas et al., 2015). canadian governments created, and continue to reinforce, the international division of reproductive labour. driven by a lack of affordable childcare and inadequate home care system, canada initiated its migrant caregiver program in the early 1900s through recruitment of foreign domestic workers from britain and scandinavian countries. the foreign domestics movement (fdm) was established in 1981 and served to further attract caribbean women to domestic work in canada (tungohan, 2013). the program expanded in 1992 to become the live-in caregiver program (lcp), which offered qualifying migrant caregivers a route to permanent residency after 24 months of work as caregivers. the main qualifications to migrate to canada through the program is a minimum of one year education in a relevant field as well as experience. this program was designed to meet a market need for qualified temporary foreign workers (tfws) to care for children, older adults and people with disabilities while living in the employers’ homes. in february 2019, immigration, refugees and citizenship canada (ircc) restructured the pathways to permanent residence as a caregiver. the current pathways are: 1) interim pathway for caregivers; 2) caring for children program; 3) caring for people with high medical needs program; and 4) live-in caregiver program. changes to the program translate into a more elitist system of recruitment, with fewer opportunities for low-skilled workers, restricted access to permanent residency and emboldened employer participation. hegemonic citizenship ihtp, 1(1), 44-60, spring 2021 cc by-nc-nd 4.0 pathways designed to absolve the government from socially inclusive policy compound migrant caregivers’ access to sustained resources. because migrant caregivers enter as temporary foreign workers and are not eligible for permanent residency for the first two years, government programs are directed at settlement (short term) rather than integration. meanwhile, migrant caregivers are expected to pay taxes and unemployment insurance without access to citizenship integration programs (stasiulis & bakan, 2005). migrant caregivers are put at a disadvantage to integrate into canadian culture socially and inclusively when they are systemically excluded from protections and opportunities that would facilitate their integration (cohen, 2000; stasiulis & bakan, 2005; d’addario, 2013; spitzer et al., 2009). in the context of this article, social integration refers to equitable and sustained access to and participation in resources that support social and economic growth. this article presents data yielded from a scoping review that examines existing literature related to government policies that shape social integration for migrant caregivers in canada. aim and methods a scoping review methodology was chosen to enhance our understanding of social integration for migrant caregivers in canada. the framework proposed by arksey and o’malley (2005). this methodology was selected over other review designs, such as systematic review, because it permitted us to broadly explore a topic with limited knowledge. unlike systematic reviews where the quality of studies is considered, scoping reviews are often described as a process of mapping and summarizing the breadth and depth of a field (levac. colqhuoun, & o’brien, 2010). most importantly, scoping reviews allow for analytical (re)interpretation of the literature. arksey and o’malley (2005) put forward five stages for conducting a scoping review, with a sixth optional stage. stage 1 relates to identifying a research question, which should provide a breadth of coverage. we aim to examine what is known from existing canadian literature about systemic barriers and facilitators of social integration among migrant caregivers? stage 2 involves identifying relevant studies and developing a decision plan for searching the literature. we searched ten publication index databases: proquest research library, sociology issn 2563-9269 46 collection, cinahl, jstor, social science citation index, google scholar, proquest dissertations and these global, migrant workers rights global, chhrncihi library and ebscohost spanning from january 1st, 2001-december 31st, 2020 to capture the latest literature. we included studies from the perspective of adult women who are current or former members of the migrant caregiver program in canada. we used both primary and secondary source articles published in english (table 1). books, reports, thesis work and academic articles were all included in this review. we used the following keywords: live-in caregiver program*, lcp*, federal caregiver program*, migrant/ live-in/ home/ temporary caregivers*, migration and settlement*, social/ economic/ identity integration*, temporary status*, social mobility*, workers rights*, social exclusion*, marginalization*, vulnerability*, access*, health*, deskilling*, canada*. stage 3, study selection, includes the application of post hoc inclusion and exclusion criteria based on the research question and new familiarity with the literature. we made initial determinations of inclusion based on abstracts and titles (figure 1). the research team met on several occasions to discuss the literature and make decisions about which text met the inclusion criteria. we excluded studies that examined temporary foreign workers (broadly) as well as studies that exclusively looked at specific health outcomes for migrant caregivers. if there was uncertainty about inclusion, the authors discussed its relevance to the research questions and came to a collective decision. stage 4 refers to data charting, in this case the authors extracted data into a chart using the following headings: citation, location (denoting a specific province), population characteristics, study design, aim of study, key findings and rationale for inclusion (table 2). stage 5 entails collating, summarizing, and reporting results. our thematic analysis was both descriptively informed by numerical summary analysis (how often/much did a theme occur) as well as qualitative analysis (depth and richness of the theme). the findings yielded from this analysis serve the broader purpose to understand social integration and we were therefore attentive to nuance, power, and privilege. results ihtp, 1(1), 44-60, spring 2021 cc by-nc-nd 4.0 the results of this review reveal a relative paucity of work on migrant caregiver social integration (n=22). the research articles included in this study used either a qualitative or mixed-methods study design. data collection spanned several canadian provinces including nova scotia, quebec, ontario, alberta, and british columbia. our analysis five themes emerged: economic exploitation, deskilling and downward occupational mobility, asymmetrical accountability, social isolation, and resilience. table 2 describes each article included in the scoping review. we have further highlighted the major theme that emerged from the research article. economic exploitation economic exploitation was a recurrent and complex theme that emerged in this review. several authors described inadequate pay with rates well below minimum wage (banerjee et al., 2017; bourgeault, parpia & atanackovic, 2010; chowdhury & gutman, 2012; pinay, 2008). most authors conceded that migrant caregivers were not paid an hourly wage but rather a weekly sum that was not commensurate with the number of worked hours (gallerand, gallie, and gobeil, 2015; oishi, 2008). in addition to low wages, gallerand et al. (2015) found that two-thirds of filipino caregivers included in their study (n=33) immigrated via a third-party recruitment agency, while pinay group (2008) reported 35% (n=148) of respondents used an agency. despite this discrepancy, all but 3 studies included in this review remarked on perilous recruitment agencies for migrant caregivers. at best, these agencies were described as providing minimal formal assistance (bonifacio, 2008) and at worse, provided illegal employment contracts with fake employers (kapiga, 2009). furthermore, many caregivers were tied to long-term debts to an employment agency with service fees estimated around $5000 (gallerand et al., 2015) to $25,000 notwithstanding travel and accommodations (salami, 2014). while some studies alluded to high remittance fees, there is a lack of data related to how much migrant caregivers spend on remittance. estimates suggest that remittance costs average 9% in canada (world bank, 2014), although they can reach as high at 30% (report on the remittance agenda of the g20, 2014). deskilling and downward occupational mobility issn 2563-9269 47 the philippines was described as the top source country for migrant caregivers under the caregiver program in several studies (bourgeault et al., 2010; kapiga, 2009; palmer, 2010; salami, 2014; salami & nelson, 2014). filipino women are often revered as ‘national heroes’ by local government to encourage outward mobility and local prosperity through remittance (bourgeault et al., 2010). the majority of migrant caregivers are highly educated. bourgeault et al. (2010) found 53% of migrant caregivers entering through the caregiver program had a bachelor’s degree and professional nurses (37%) were overrepresented in domestic work. kapiga (2009) found 77% of migrant caregivers were university educated and miller (2010) found that 60% of migrant caregivers in her sample had post-secondary education in the fields of nursing, education, or midwifery. however, professional development for these highly skilled migrant caregivers were truncated (banerjee et al., 2017). oishi (2008) describes how many migrant caregivers lose their skills when they are removed from their professional practice; further courses to upgrade skills are very costly for foreign residents. notably, oishi also describes how many migrant caregivers turn to informal care work when they lose their self-esteem and self-confidence to practice in their designated field. bourgeault et al. (2010) notes that while skilled workers are more likely to be selected for the program because of their credentials, they in turn become deskilled in the process, at least temporarily when they are unable to work within their scope of practice. for example, when a registered nurse is hired as a migrant caregiver and unable to practice their skills. salami and nelson (2014) critically discuss migration through the caregiver program as part of the global care chain, whereby they apply hochschild’s (2002) concept of emotional imperialism which delves into emotional care work that is extracted from the global south to service the global north. in their discussion, they note a labour gap that is left in global south, typically filled by older daughters and mothers, structured by gender, class, nationality and ethnicity. the authors illuminate the downward occupational mobility of migrant caregivers who are required to work a minimum of 24 months in the caregiver program before they are eligible to seek employment in their trained profession (salami, 2016; salami & nelson, 2014). ihtp, 1(1), 44-60, spring 2021 cc by-nc-nd 4.0 oishi (2008) describes how many migrant caregivers are recruited to canada to fill care deficits in the healthcare system but end up being overqualified and working in low-skill work because degrees and training are not recognized in canada. the downward mobility is further sustained by expensive and often unaffordable professional development opportunities, such as obtaining a nursing degree. oishi further notes that after the caregiver program, many migrant caregivers take on personal support worker (psw) certifications because they are relatively inexpensive and enable migrant caregivers to work in nursing homes, retirement homes and hospitals. pratt et al. (2008) note that migrant caregivers typically retain very few resources after the caregiver program because they are remitting large sums for family back home while also saving to bring their families to canada if they obtain permanent residency. asymmetrical accountability migrant caregivers endure tremendous scrutiny in the caregiver program as well as through their process of immigration (atanackovic & bourgeault, 2014). for example, in addition to government and employer requirements, canay (2014) exposes employer surveillance in her narrative research study, noting how employers engage in observation of the migrant caregiver out of lack of trust and stereotypical attitudes contribute to an atmosphere of control for migrant caregivers. additionally, there are asymmetrical stakes for migrant caregivers compared to their employers. loss of employment and risk of deportation are enormous negative consequences for migrant caregivers who are terminated. paling in comparison is the recourse when employers are abusive, who may endure fines or exclusion from the program. regulatory protection asymmetrically favours the employers. teeple hopkins (2016) describes how migrant caregivers are only covered under labour law protections if they are employed through an agency in quebec. migrant caregivers paid by families have no protections under occupational health and safety acts, excluding them from workers compensation in the event of injury (teeple hopkins, 2016). under federal government requirements of the caregiver program, employers are expected to provide third party health care insurance coverage for the first three months when migrant caregivers are ineligible for provincial insurance plans, but only 24% (n=21) did so according issn 2563-9269 48 to carlos and wilson (2018). galerand et al. (2015) reported a case where a migrant caregiver was charged expensive rent for their living accommodations. furthermore, atanackovic et al. (2014) described circumstances where accommodations did not meet federally mandated requirements, such as having a separate lockable space, but due to a lack of system checks there was no recourse. social isolation our analysis of social inclusion and integration would be remiss if we did not comment on the overwhelming social isolation that many migrant caregivers experience. visas obtained under the caregiver program prohibit migrant caregivers from bringing family (atanackovic et al., 2014). many migrant caregivers endure long separations from their families which take a toll on their wellbeing. tungohan (2012) also noted overwhelming disconnect from home life, particularly when they have maternal responsibilities at home. parental obligations as primary caregivers, even while working abroad, generated high expectations for sustaining familial relationships with little control. according to tungohan , gendered care work is reinforced when migrant caregivers transfer tasks to other female members within the household to cope. spitzer (2009) highlights the experience of migrant caregivers living in rural communities in canada and exposes social isolation associated with constrained access to informal and formal social supports. she describes disruption in settlement and social integration when there is a paucity of social resources for migrant caregivers. moreover, she notes a lack of autonomy and privacy when migrant caregivers have to rely on their employers for transport to health services, government offices, social gathering and religious services (spitzer, 2009). migrant caregiver who lived in smaller homogenous communities reported feeling subjugated by an othering gaze (spitzer, 2009). rather than feeling included and having membership in the community, many described feelings of being exoticized and objectified (spitzer, 2009). resilience resilience was an important theme that emerged from our analysis. despite a lack of citizenship to ihtp, 1(1), 44-60, spring 2021 cc by-nc-nd 4.0 enable active political participation such as voting, many migrant caregivers engaged through civil society activity, such as rallies and community engagement (tungohan, 2012). several authors noted gains through community activism that are relatively unexplored (atanakovic et al., 2014; bonifacio, 2008; kapiga, 2009). kapiga (2009) identified filipino community groups as informational and emotional resources to facilitate migrant caregivers’ connections to their culture, heritage and language, as well as engendering feelings of unity and belongingness. organizations such as filipino solidarity cooperative, the industrial welfare commission (iwc) and pinay (a filipino word use to describe a filipino woman living outside the philippines) were listed as outlets to learn new skills, build confidence and develop social networks. importantly, kapiga identified collective organized resistance and inter-ethnic alliances as means to fight for rights and protections. these organizations play an important role in questioning power differentials and regulations that render migrant caregivers socially excluded. there is movement towards unionization among caregiver program advocates to address protection and bargaining rights (kapiga, 2009). root (2009) notes that the kinship garnered through informal support groups have mitigated symptoms of depression, homesickness and alienation. furthermore, root described how spirituality also plays a strong role for the survival of filipina caregivers against isolation. tungohan (2012) illustrates the expansion of definitions of motherhood that ensues from migrant caregiving. while she highlights in depth the toll that transnational hyper-maternalism takes on migrant caregivers and their families, including traumatic family reunification, she also notes the resilience that is harvested when women come together. specifically, she describes how support networks and counselling groups in host countries assist in challenging gendered norms and societal indifference. this type of advocacy is imperative to combat social exclusion. discussion the results of this scoping review illuminated systemic barriers for migrant caregivers to access equitable resources and rights to civic participation that support their wellbeing, including economic exploitation, deskilling and downward occupational issn 2563-9269 49 mobility, asymmetrical accountability, and social isolation. these barriers produced and perpetuated a cycle of low-earning, lack of opportunity, and deskilling. the review also exposed the shortcomings of caregiver pathways for permanent residence geared towards settlement of newcomers over social integration compounded by social isolation. finally, resilience emerged as a fifth theme to highlight community advocacy that exist despite exclusionary policies. parrenas (2001) defines ‘partial citizen’ as a migrant who lacks full integration in the destination country and yet also lacks protections in her country of origin. in canada, immigrant pathways are built on settlement rather than integration which systematically undermines belonging. according to parrenas (2001), migrant caregivers mitigate their partial citizenry by reasserting their belongingness to their home country. childcare, senior care and care for persons with high medical needs continue to be under resourced within the public systems in canada. childcare, for example, is heavily reliant on informal supports such as relatives, unlicensed centers and home-daycares due to costs and waitlists (hanley et al., 2017). hanley et al. (2017) explain that commodified home-based, low-wage domestic work is encouraged through private markets, particularly in the absence of adequate national strategies and public policy. furthermore, governments reinforce an informal care system through tax deductions to families in replacement of affordable care options. underlying the lack of policy is a gendered value system, where men are traditionally visible as wage earners, while women are visible as mothers and occupy private spaces in the home (crompton, 1999). because of this value system, there is an enduring acceptance that caregiving is women’s reproductive work, which renders it invisible and undervalued (duffy, albelda & hammonds, 2013). instead of restructuring care work as legitimate, valued and skilled work, it has been shifted to racialized migrant caregivers – as low-wage and low-skilled work. kelly, astorga-garcia, and esguerra (2009) affirmed this trend in their mixed method study (n=421) that found 66% of migrant caregivers experienced downward mobility and only 11% had found work analogous to their employment prior to leaving the philippines. a lengthy separation from their profession practice coupled with erosion of their confidence associated with the confinement to unskilled labour contributed to deskilling (zaman, 2006). ihtp, 1(1), 44-60, spring 2021 cc by-nc-nd 4.0 if care work continues to be low-paid or unpaid, asymmetrical accountability will persist. indeed, reciprocal accountability was non-existent in many situations and became amplified when few or no channels ensured minimal protections for migrant caregivers (e.g., safeguards when policies were not followed by employers). policy changes based on social justice are required to improve economic and social recognition of care work. furthermore, movement towards government accountability for safe work environments is direly needed. low wages, third-party immigration fees and high remittance rates were all systemic mechanisms that reinforce economic exploitation among migrant caregivers, resulting in intricate power dynamics that sustain such exploitation. bourgeault et al. (2010) reported how migrant caregivers are prohibited from seeking supplementary employment outside the residence of their employer through the caregiver program, and employers are free to terminate employment at any time. furthermore, due to few employer regulations, the job description of migrant caregiver is often ambiguous, and caregivers are expected to serve in several capacities such as carers, cooks and entertainers. because of precarious living status many migrant caregivers endure abuse and exploitation to maintain their employment (atanackovic & bourgeault, 2014; banerjee et al., 2017). compounding the exploitation, there is underlying power system where most employers are middle and upper middle class and hold highly qualified jobs such as doctors, lawyers, professors, and engineers (gallerand et al., 2015). paradoxically, bourgeault notes how the caregiver program promotes and exploits cheap labour that transcends economic echelons – particularly in a climate of unaffordable child and home care for many in canada. either way, migrant caregivers are filling a labour gap without protective regulation to ensure fairness of their work. without adequate pay or protection, social integration is undermined – particularly in a neoliberal system, like canada, that equates worth predominantly with financial viability. in 2011, g20 countries including canada committed to reduce remittance fees paid to banks and transfer firms to 5% which would result in an estimated $11billion usd in the hands of families rather than banks worldwide (westwood, 2013). global affairs canada has partnered with statistics issn 2563-9269 50 canada to conduct a survey to better gauge remittance rates. to date, canada has not instituted regulations to meet the 5% target, instead, migrant care work is the wild west for unregulated employment recruitment agencies that capitalize on low-wage work, charge high fees and make false promises for permanent residency (pinay, 2008). their role becomes justified when government policy requires third-party agencies to legitimize care work and qualify for employment protections (teeple hopkins, 2016). such perilous agencies would not be tolerated in high-earning sectors, or at the very least, there would be market controls to ensure fairness (i.e. charging employers for service rather than employees). through restructuring, these agencies could channel opportunities for new employment, offer professional development and possible routes for unionization. furthermore, these groups could take on advocacy work such as canada falling short on its commitment to reduce remittance fees to 5%, as part of its g20 promise (westwood, 2013). despite a relative paucity of work, there was resounding consensus gleaned from the literature that migrant caregivers were relatively unprotected as employees. indeed, this notion resonates with salami, amodu & okeke-ihejirika (2016) study that found migrant caregivers were inadequately compensated and unable to afford housing outside of their employer’s home, which compounded their fear to report incidents of abuse. nursing professional associations could play an important role in advocating for equitable health conditions for these caregivers. the social exclusion and lack of social protection experienced by migrant caregivers is largely structured by immigration policies. specifically, initial migration to canada as a temporary foreign worker impedes the social and economic integration of migrant caregivers. for instance, caregivers often have bachelor’s degree before migrating to canada, but they often work in unskilled jobs after the completion of the caregiver program (kelly, astorgagarcia and esguerra, 2009). policy implications from our review indicate a need to expand permanent residence pathways for caregivers. canada is one of a few countries that allows migrant workers to migrate initially as temporary foreign workers and then transition to permanent resident status. in taiwan and hong kong, caregivers migrate as temporary foreign workers on a two-year contract and are unable to transition to permanent resident status ihtp, 1(1), 44-60, spring 2021 cc by-nc-nd 4.0 (parrenas, 2001). in many other high-income countries (such as australia and united states) specific pathways for migrant caregivers that includes initial temporary migration does not exist. policy recommendations in canada include the need to ensure migrant caregivers (including those providing child and elder care) can migrate to canada as permanent resident. a few considerations have been noted while interpreting findings from our scoping review. firstly, while we adopted methodology by levac et al. (2010) we have not shared our findings from this work with stakeholders. including this step could offer unique insights and help refine some of the findings of this review. furthermore, we were restricted in our access to certain academic journals and failure to include evidence from such journals may have omitted potentially valuable findings. since the studies we accessed mainly represented english speaking migrant caregivers, we may be remiss in our depiction of social integration and inclusion for migrant caregivers who do not speak english. conclusion this work invites critical discussion and promotes candid dialogue to inform policy changes to optimize social integration. nurses must advocate for improving social conditions of migrant caregivers by addressing immigration policies that limits the social integration of migrant caregivers. this is especially important given that many migrant caregivers are nurses and many experience deskilling upon migration to canada (bourgeault et al., 2010; kelly, astorga-garcia and esguerra, 2009). furthermore, it will be important to build on existing community work and resilience, while shifting away from settlement policies designed for short-term circumstances and move towards social integration, particularly given the high labour expectations on migrant caregivers. references arksey, h., & o'malley, l. (2005). scoping studies: towards a methodological framework. international journal of social research methodology, 8(1), 19-32. doi:10.1080/1364557032000119616 atanackovic, j. & bourgeault, i. l. (2014). economic and social integration of immigrant live-in caregivers in canada. irpp study, no. 46. issn 2563-9269 51 retrieved from: http://irpp.org/wpcontent/uploads/assets/research/diversityimmigration-and-integration/atanackovicbourgeault-no46/study-no46.pdf bakan, a. b. & stasiulis, d. (2012). the political economy of migrant live-in caregivers: a case of unfree labour? in patti tamara lenard and christine straehle (ed.), legislated inequality. banerjee, r., kelly, p., tungohan, e., gabrielaontario, migrante-canada, & community alliance for social justice (casj) (2017). assessing the changes to canada’s live-in caregiver program: improving security or deepening precariousness? available: http://p2pcanada.ca/files/2017/12/assessin g-the-changes-to-canadas-live-incaregiver-program.pdf bonifacio, glenda lynna anne tibe. (2008). i care for you, who cares for me? transitional services of filipino live-in caregivers in canada. asian women, 24(1), 25-50. doi:10.14431/aw.2008.03.24.1.25 bourgeault, i. l., atanackovic, j., lebrun, j., parpia, r., rashid, a., winkup, j. (2010) immigrant care workers in aging societies: the canadian context and experience, ottawa, on: ontario health human resource research network retrieved from http://www.healthworkermigration.com/im ages/stories/docs/immigrant-care-workersreport-2.pdf. bourgeault, i. l., parpia, r., & atanackovic, j. (2010). canada’s live-in caregiver program: is it an answer to the growing demand for elderly care?. journal of population ageing, 3(1-2), 83-102. carlos, j. k., & wilson, k. (2018). migration among temporary foreign workers: examining health and access to health care among filipina live-in caregivers. social science & medicine, 209, 117-124. doi:10.1016/j.socscimed.2018.05.045 canay, l. c. p. (2014). clinging to a knife’s edge: the live-in caregiver program castles, s. & miller, m.j. (2009). the age of migration: international population movements in the modern world. journal of contemporary european research. 5(2). chowdhury, r., & gutman, g. (2012). migrant live-in caregivers providing care to canadian older adults: an exploratory study of workers’ life ihtp, 1(1), 44-60, spring 2021 cc by-nc-nd 4.0 and job satisfaction. journal of population ageing, 5(4), 215-240. citizenship and immigration canada. (2009). news release: minister kenney proposes significant improvement to the live-in caregiver program. retrieved from http://www.cic.gc.ca.ezproxy.lib.ryerson.ca /english/department/media/releases/2009/ 2009-12-12.asp. cohen, r. (2000). “mom is a stranger”: the negative impact of immigration policies on the family life of filipina domestic workers. canadian ethnic studies, 32(3): 76-89. compton, r. (1999). the decline of male breadwinner: explanations and interpretations in restructuring gender relations and employment: the decline of the male breadwinner, edited by r. crompton. oxford and new york: oxford university press. d'addario, s. (2013). finding home: geographical links between paid and unpaid work for transnational care workers in toronto's suburbs. https://www.library.yorku.ca/find/record/3 207843 duffy, m., albelda, r., & hammonds, c. (2013). counting care work: the empirical and policy applications of care theory. social problems. 60(2):145-167. galerand, e., gallie, m., & gobeil, j. o. (2015). domestic labour and exploitation: the case of the live-in caregiver program (lcp) in canada. sac-pinay research report. retrieved from: http://www.mcgill.ca/lldrl/ labour-law-and-development-research laboratory. hanley, j., larios, l., & koo, j.h. (2017). does canada “care” about migrant caregivers? implications under the reformed caregiver program. canadian ethnic studies, 49(2), 121-139. doi: http://doi.org/10.1353/ces.2018.0015 hochschild, a. r. (2002). love and gold. global women: nannies, maids and sex workers in the new economy. eds. barbara ehrenreich and arlie russell hochschild. new york: henry holt and company. 14-30. kapiga, i. (2009). agents of change, colours of resistance: the socio-economic integration of filipina live-in caregivers in montreal. http://www.mcgill.ca/lldrl/ ihtp, 1(1), 44-60, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 52 (doctoral dissertation, concordia university). kelly, p., astorga-garcia, m., esguerra, e. f., & community alliance for social justice. (2009). explaining the deprofessionalized filipino: why filipino immigrants get low paying jobs in toronto (ceris working paper no. 75). toronto, on: joint centre of excellence on research on immigration and settlement. kelly, p., park, s., de leon, c., priest, j. (2011). profile of live-in caregiver immigrants to canada, 1993-2009. toronto immigration employment data initiative (tiedi) analytical report 18. levac, d., colquhoun, h., & o'brien, k. k. (2010). scoping studies: advancing the methodology. implementation science: is, 5(1), 69-69. doi:10.1186/1748-5908-5-69. migrant workers alliance for change (2017). repeal section 38(1)(c). retrieved from: http://www.migrantworkersalliance.org/pol icy-submission-repeal-section-381c-of-irpa/ migrant workers alliance for change (2018). what’s happening with the caregiver program? retrieved from: http://www.migrantworkersalliance.org/wp -content/uploads/2018/02/20180222_infoflyer-for-caregivers-on-2019-expiry.pdf miller, m. (2011). claiming a life of permanence: filipina caregivers' migration experiences in canada's live-in caregiver program. montreal: mcgill university. retrieved from: https://www.proquest.com/docview/87396 6867. accessed september 14 2020. oishi, n. (2008). population aging and migration: migrant workers in elder care in canada. the journal of social science, (65), 103-122. palmer, k. s. (2010). spaces of belonging: filipina lcp migrants and their practice of claiming space in toronto. master of arts in geography thesis: university of toronto. retrieved from: https://tspace.library.utoronto.ca/bitstrea m/1807/24614/3/palmer_katelyn_s_20106 _ma _thesis.pdf. accessed september 14, 2020. parreñas, r. s. (2001). “the international division of reproductive labor,” pp. 61-79, in parreñas, r. s., servants of globalization: women, migration, and domestic work. stanford: stanford university press parreñas, r. s. (2012). the reproductive labour of migrant workers. global networks. 12(2): 269-275. parreñas, r. s., silvey, r., hwang, m.c. (2015). serial labour migration: precarity and itinerancy among filipino and idonesian domestic workers. international migration review. https://doi.org/10.1177/019791831880476 9. pinay, 2008, warning! domestic work can be dangerous to your immigration status, health, safety and wallet, report on the finding of a community-based survey of work condition of montreal domestic workers. montreal, online: https://docs.google.com/file/d/1pinzxgoxd vsx3zp9ua44m6zoy_birwfgzdufh0cwljjxsmgsuo2weqbrwj6/edit?hl=en pratt, g., pendakur, r., ugnayan ng kabataang pilipino sa canada, philippine women centre of b.c, & metropolis british columbia. centre of excellence for research on immigration and diversity. (2008). deskilling across the generations: reunification among transnational filipino families in vancouver metropolis british columbia, centre of excellence for research on immigration and diversity. root, l. (2008). “i may be lost but i know how to find my way.”: the ‘lived’ experiences of filipina caregivers in the live-in caregivers’ program in halifax. masters thesis, mount saint vincent university. salami, o. o. (2014). "all for the family": a case study on the migration of philippine educated nurses to ontario through the live-in caregiver program (doctoral dissertation). salami, b. (2016). migrant nurses and federal caregiver programs in canada: migration and health human resources paradox. canadian journal of nursing, 48(2), 35-40. doi: 10.1177/0844562116663951 salami, b., & nelson, s. (2014). the downward occupational mobility of internationally educated nurses to domestic workers. nursing inquiry, 21(2), 153-161. doi:10.1111/nin.12029 salami, b., amodu, o., & okeke-ihejirika, p. (2016). migrant nurses and care workers rights in https://www.proquest.com/docview/873966867.%20accessed%20september%2014%202020 https://www.proquest.com/docview/873966867.%20accessed%20september%2014%202020 ihtp, 1(1), 44-60, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 53 canada (no. 2016-9). unrisd working paper. spitzer, d. l., prairie metropolis centre, & prairie centre of excellence for research on immigration and integration. (2009). live-in caregivers in rural and small city alberta prairie metropolis centre. spitzer, d. l., torres, s., doucet, m. j., ceris, & ontario metropolis centre. (2008). genderbased barriers to settlement and integration for live-in-caregivers: a review of the literature ceris the ontario metropolis centre. stasiulis, d. k. & bakan, a. b. (2005). negotiating citizenship: migrant women in canada and the global system. toronto, ontario: university of toronto press. tastsoglou, e., & dobrowolsky, a. (2017). gender and care relationships in transnational families: implications for citizenship and belonging. canadian ethnic studies, 49(3), 111-113. doi:10.1353/ces.2017.0024 teeple hopkins, c. (2017). work intensifications, injuries and legal exclusions for paid domestic workers in montréal, québec. gender, place & culture, 24(2), 201-212. doi:10.1080/0966369x.2017.1298573 tungohan, e. (2013). reconceptualizing motherhood, reconceptualizing resistance: migrant domestic workers, transnational hyper maternalism and activism. international feminist journal of politics, 15(1), 39-57. doi:10.1080/14616742.2012.699781 tungohan, e., banerjee, r., chu, w., cleto, p., de leon, c., garcia, m.,...sorio, c. (2015). after the live-in caregiver program: filipina caregivers’ experiences of graduated and uneven citizenship. canadian ethnic studies, 47(1), 87-105. doi: http://doi.org/10.1353/ces.2015.0008 walton-roberts, m., & hennebry, j. (2012). indirect pathways into practice: a comparative examination of indian and philippine internationally educated nurses and their entry into ontario’s nursing profession. ceris working paper series 92. toronto, ontario. westwood, r. (2013). should canada make it easier for immigrants to send money home? maclean’s magazine. retrieved from: http://www2.macleans.ca/2013/02/19/ho meward-bound-2/remittances/ zaman, h. (2006). breaking the iron wall: decommodification and immigrant women’s labour in canada. lanham, md: lexington books. ihtp, 1(1), 44-60, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 54 figure 1: inclusion/exclusion criteria ihtp, 1(1), 44-60, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 55 table 1: inclusion/exclusion criteria inclusion population: former or current members of the migrant caregiver program; age 18+, women, migrants in canada type of articles: primary and secondary source peer-reviewed articles, english language between 2001-2020 exclusion population: members of the temporary foreign workers program – not in the migrant caregiver program; age less than 18, males, migrants not in canada issn 2563-9269 56 table 2: study results citation location study objectives participant sample study design major findings bonifacio, 2008 southern alberta to explore the transitional supports and services used by migrant caregivers while in the live-in caregiver program and services provided by the philippine government during this period. 30 filipino live-in caregivers. qualitative: interviews and focus group discussions between 2006-2007. economic exploitation asymmetrical accountability social isolation bourgealt, parpia & atankovic, 2010 hamilton, toronto, vancouver, victoria, montreal to contribute knowledge about the experiences of live-in caregivers and perceptions of their relationships with clients and their families. 19 immigrant care workers who came to canada through lcp who were presently working in a range of different health care institutions: large/ small institutional settings, home services and private households. qualitative: semistructured interviews and two focus groups between 2007-2008. economic exploitation downward occupational mobility social isolation chowdhury & gutman, 2012 british columbia to further understanding of services provided by lcp elder care workers, the nature of employeremployee relations, as well as their experiences and perceptions as migrant care workers. to understand the job trajectory and life/ job satisfaction of lcp elder care workers. 14 migrant lcp-ltc1 workers (13 filipino) in 2009 5 migrant lcp-ltc workers in 2011 before, during, and after working under lcp. mixed methods: faceto-face interviews, job satisfaction scale. social isolation resilience kapiga, 2009 montreal, quebec to explore the influence of the lcp on the socioeconomic integration and personal experiences of a sample of filipina live-in caregivers using an anti-racist, feminist approach. 31 filipina live-in caregiver women. qualitative: semi structured interviews. asymmetrical accountability social isolation resilience miller, 2010 montreal, quebec to explore some of the challenges experienced by filipina caregivers in the lcp; barriers faced in 15 filipino lcp caregivers, 3 community organization qualitative: in-depth semi-structured economic exploitation 1 long-term care (ltc) ihtp, 1(1), 44-60, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 57 confronting these challenges; why some caregivers claim their rights; and strategies that migrant caregivers in the lcp use to overcome barriers to accessing rights. workers and 2 government employees. interviews between 2009-2010. downward occupational mobility asymmetrical accountability social isolation resilience oishi, 2008 toronto, ontario to analyze the experiences of migrant elder caregivers under lcp, their working conditions, how they exercise their rights, and the economic integration process after lcp. 40 filipino migrant care workers, 27 government officials/ recruitment agency representatives/ employers/ ngo2 representatives. qualitative: in-depth interviews between 2005-2007. economic exploitation downward occupation mobility social isolation palmer, 2010 toronto, ontario to understand how filipina lcp migrants cope with their experiences of exclusion at various scales across toronto. to explore some of the key sites and spaces of the social networks of filipina lcp migrants. to enrich the understanding of the global care chains model by drawing attention to the coping practices of filipina lcp migrants in their efforts to create communities of affirmation, care, and belonging. 30 filipina lcp migrants for young children. qualitative: semistructured in-depth interviews and participant observation between february 2009-may 2009. social isolation asymmetrical accountability resilience pinay, 2008 vancouver, british columbia to argue that the lcp sets the course for families’ lives in canada, by drawing all of the family members into its orbit of social exclusion. 27 filipino families who have lived through the lcp experience. qualitative: interviews between 2004-2008. economic exploitation downward occupational mobility asymmetrical accountability 2 non-government organization (ngo) ihtp, 1(1), 44-60, spring 2021 cc by-nc-nd 4.0 ihtp, 1(1), 44-60, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 58 pratt et al. (2009) vancouver, british columbia to argue that rather than reunification ending the lcp experience, the lcp sets the course for families’ lives in canada, by drawing all of the family members into its orbit of social exclusion 27 filipino families who have lived through the lcp experience qualitative interviews (2004-2008) downward occupational mobility social isolation root, 2008 halifax, nova scotia to explore the lived experiences of domestic workers/ caregivers who live in a small, or medium sized urban centre with lower levels of cultural and racial diversity. 5 filipino migrant caregivers (3 with children residing in philippines and 2 single) qualitative: in-depth interviews. economic exploitation social isolation spitzer, 2009 rural and small city alberta to highlight the experiences of live-in caregivers currently working and living in alberta outside major urban centres, illuminate the working conditions of migrant caregivers and examine access to social supports or health services. 39 live-in caregivers (38 from philippines, 1 from india). 224 surveys sent to immigrant serving agencies, extended care facilities, hospitals, religious institutions, service organizations. mixed methods. qualitative: interviews and focus groups. quantitative: survey of local institutions and organizations. economic exploitation downward occupational mobility social isolation tungohan, 2013 toronto, ontario to illustrate how migrant caregivers negotiate their maternal responsibilities from afar and how those responsibilities inform their political activities in canada. 15 filipino live-in caregivers. qualitative: semistructured interviews in 2010. social isolation resilience tungohan et al., 2015 canada (fg: montreal, toronto, ottawa, calgary, edmonton, vancouver) this study examined the economic, social, and structural barriers involved in the transition from the lcp to the canadian labour market. former live-in caregivers (survey respondents n=631). mixed methods: focus group interviews, national survey data economic exploitation downward occupational mobility asymmetrical accountability banerjee et al., 2017 canada (fg: toronto, montreal, vancouver, calgary, edmonton, ottawa) this report summarizes the findings of studies on former lcp caregivers transitioning from the precarious role of temporary foreign workers to permanent canadian citizens. former live-in caregivers (survey respondents n=631). mixed methods: focus group interviews, national survey data economic exploitation downward occupational mobility ihtp, 1(1), 44-60, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 59 asymmetrical accountability social isolation tastsoglou & dobrowolsky, 2017 canada (halifax, nova scotia) this study explored the influence of gender politics on transnational care relations and practices of permanent residents and foreignborn citizens. racially diverse newcomers who have been/were involved in transnational caregiving within the last 5 years (n=20; 8 men, 12 women). qualitative: semistructured in-depth interviews asymmetrical accountability social isolation atanackovic & bourgeault, 2014 canada (quebec, ontario, british columbia) this study assessed economic and social integration of live-in caregivers while employed in the lcp, after the 2010 policy changes, and beyond completion of the program. current and former migrant care workers involved in older adult care (n=27), child care (n=28), or both (n=3). qualitative: in-depth interviews and focus groups economic exploitation downward occupational mobility asymmetrical accountability social isolation salami, 2014 canada (toronto, ontario) this study explored the experiences of foreigntrained nurses who migrate to ontario through the lcp. nurses who migrated to canada through the lcp (n=14). qualitative: case study methodology, in-depth interviews downward occupational mobility social isolation economic exploitation galerand, gallié, & gobeil, 2015 canada this study explored the effects of exploitative labour laws and conditions faced by caregivers employed through the lcp. domestic workers who had been submitted to the live-in requirements during 24 months as provided by the lcp (n=33). mixed methods: questionnaire, semistructured interviews economic exploitation downward occupational mobility social isolation carlos & wilson, 2018 canada (greater toronto this study examined the physical and mental health of migrant caregivers employed through the lcp. women born in the phillipines who came to canada under the lcp qualitative: semistructured interviews asymmetrical accountability ihtp, 1(1), 44-60, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 60 area, ontario) (n=23); current live-in caregivers (n=4) and former live-in caregivers (n=17). social isolation teeple hopkins, 2016 canada (montreal, quebec) this study assessed how work intensification, workplace injury, and structural exclusion from labour laws affect paid domestic workers in canada. paid domestic workers, aged 18-65, legally residing in montreal; migrant live-in caregivers (n=3) or other domestic worker (n=1). qualitative: in-depth interviews economic exploitation social isolation canay, 2014 canada (toronto, ontario) this study explored filipina women’s experiences with the lcp in toronto, canada. individuals with a "live-in" experience under the lcp, who identify as filipina, age 30-64 years old, have recently completed the program 1-3 years ago (n=3). qualitative: unstructured, openended interviews economic exploitation social isolation walton-roberts et al (2012) ontario to examine the experiences of nurses entering ontario as temporary migrants through lcp and as international students who convert to permanent status and re-enter the nursing profession. what are the pathways (re-training, language training, etc.) these nurses take to gain re-entry into the profession? what are the impacts of this emerging “temp-to-perm” model of migration, on the nursing sector, and on immigrant social and economic integration? 30 nurses from the philippines in ontario under the lcp and 68 nurses from india entering ontario colleges as international students qualitative (semistructured interviews) and quantitative (surveys) 2 sets of case study groups downward occupational mobility 345 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 barriers and facilitators to providing human immunodeficiency virus pre-exposure prophylaxis decision support to black patients in canada: a cross-sectional study original research genevieve antonette guillaume1, s. raquel ramos1, gamji m'rabiu abubakari2,3, deanne elizabeth turner2,4, wale ajiboye3, abban yusuf3, pascal djiadeu3,5, apondi odhiambo3, cheryl lynn pedersen3, aisha lofters3, geoffrey williams3, laron e. nelson2,3 1rory meyers college of nursing, new york university, new york, usa; 2school of public health/medicine, yale university, ct, usa; 3st. michael’s hospital, unity health toronto, toronto, canada; 4college of nursing, university of south florida, florida, usa; 5mcmaster university, hamilton, canada corresponding author: g. a. guillaume (genevieve.yunit@gmail.com) abstract introduction: healthcare settings can build towards a specific social environment, in which black patients can make safe and informed health decisions, including those about whether to use pre-exposure prophylaxis (prep). using the conceptual framework of the self-determination theory for the guidance to identify the extent to which current hiv prep decision support practices from health personnels (hcp) are autonomy supportive. this identifies future developments and implementations of interventions for hcp capacity building to safely support and enhance the autonomy of black patients who are considering using prep. methods: using a cross-sectional design for examining hcps' perspectives on delivering quality prep usage-related decision support. through a cross-sectional online survey of 24 hcp from 10 community-based health centres serving in toronto, canada, descriptive statistics were characterized in close-ended survey data and sample. open-ended survey responses were analyzed using qsorting methodology. results: of the hcp, 40% were willing to provide prep decision support to black-identified patients. hcp reported barriers of needing education about prep and available resources (96%). there’s a need for more education and resources to facilitate safe decision support for black patients for reducing prep uptake disparities. conclusion: it is imperative that cultural humility in healthcare be upheld to provide safe and informed decision support. solidifying a need for a uniformed definition of cultural humility (globally) since life experiences and background are equally crucial to the health status of that individual. future research should consider a stand cultural humility to globally. competence development among hcp can take the forms of providing training to increase cultural humility awareness, knowledge, and skills that can build towards an environment in which black patients are provided with safe and informed information about their health to make relevant decisions. keywords black population, decision support, health personnel, healthcare provider, hiv introduction approximately 63,000 canadians are living with hiv, with upwards of 2,000 new infections occurring in 2016 (canada, 2019). among these cases are a high prevalence (9,438; 15%) of persons who are recent descendants from countries in sub-saharan africa and the caribbean (canada 2014; 2019; the epidemiology of hiv, 2018). the province of ontario, in canada, accounts for the largest proportion of canada's hiv incidence, with 38.9% of the county's new cases in 2017 (haddad et al., 2019) african, caribbean, and 346 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 canadian black (blacks) represent only 4.7% of ontario's population, yet account for 30% of the hiv prevalence and 25% of new infections (canada 2014; 2019; the epidemiology of hiv, 2018). this proves the significant health disparities towards the black identified person residing in canada, specifically in hiv incidences in ontario. when unpacked further to address both race and sexual orientation, among 481 black men who have sex with men (bmsm), living in ontario, who constitute 18% of the population, the hiv prevalence were 38% (nelson et al., 2019). comprehensive biomedical prevention strategies have the potential to contribute to narrowing racial health disparities in hiv and reduce disproportionate rates of hiv among the black population especially bmsm. oral hiv prep includes the use of antiretroviral medication, which has been shown to be highly effective in blocking the transmission of hiv (chou et al., 2019; grant et al., 2010; 2014; sidebottom et al., 2018; thigpen et al., 2012; van damme et al., 2012). despite the strong evidence for prep's efficacy (chou et al., 2019; zhabokritsky et al., 2019), use continues to be low among the black population in ontario. several factors have been reported here that may contribute to low prep use rates among the black population, however, intersectionality is a consideration to capture health disparities trends that determine health outcomes among black patients. while these include cost, prejudice/stigma, and concerns about side effects, we investigated the rates of hcp discussions of prescribing prep with white patients higher than with black patients (calabrese et al., 2018; levy et al., 2014; sidebottom et al., 2018; zhabokritsky et al., 2019). during healthcare visits, hcps play an important role as influencers who can facilitate or undermine prep use among black patients. the determining factors for prep uptake can arise from the information hcp decide to share or withhold with their black patients. additional considering factors can be hcp's use of cultural humility responsive approaches during care and assessments and emphasizing strategies for freedom and choice (decision-support) to compel black patients to use prep. cultural humility is defined by the national institutes of health (nih) as “a lifelong process of self-reflection and self-critique whereby the individual not only learns about another’s culture, but one starts with an examination of her/his own beliefs and cultural identities” (sufrin, 2019). to date, hcps' perceptions of prep decisional needs of black patients, and the views and expectations regarding their role in meeting the decisional needs of black patients have been understudied. the purpose of this study was to examine hcps’ perspectives on what factors influence their perspectives of decision support to black patients who are considering whether to use prep. conceptual framework this study was guided by the self-determination theory (sdt) which contends that humans inherently have natural inclinations towards health-protective activities (deci & ryan, 2012; nelson et al., 2015; ng et al., 2012; patrick et al., 2012), through the fulfilments of the three basic human psychological needs; autonomy (self-governance, including patients' safe and informed decision making), competency (having a sense of that one can attain a goal, such as medication adherence), and relatedness (one's connection to others, like trust with hcp). according to sdt, the fulfilment of all mentioned psychological needs in one's social environment helps to facilitate the internalization of motivation for prohealth behaviours, which can include hiv prevention behaviours such as the use of prep. consistent with sdt, we conceptualized the healthcare setting as a specific social environment in which patients contemplate and make health decisions, including decisions about whether to use prep. our operating proposition in using sdt were that healthcare environments would be optimized for safe and informed prep use decision-making among black patients. this would be carried out through hcps' decisions to support stemming attitudes, expectations, beliefs, and behaviours toward providing hiv care. the aim of the study is to provide healthcare providers non-contingent resources and skills that enabled patients (black) to achieve preprelated adherence goals while facilitating connection and trust with black patients. methods design a cross-sectional online survey was conducted in 2018. a non-probability sample of 24 health 347 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 personnel (i.e., nurses, social workers, non-licensed personnel, and physicians) employed in organizations that offered prep services were included. although 24 is a modest sample size, similar size samples can be found in earlier hiv research studies. specifically, samples with sizes ranging from 20-30 have been used and included underrepresented groups (creswell, 2018). participants were selected based on their direct involvement in providing any component(s) of the prep care continuum, including 1) identifying individuals at risk of contracting hiv, 2) increasing and enhancing hiv risk awareness, 3) facilitating prep access, 4) prescribing prep, and 5) supporting prep adherence (nunn et al., 2017). all participants were recruited through their place of employment which had established sexual health clinics that served black patients. these organizations include family health teams, community health centres, sexual health clinics, and the aids service organizations. study participants were recruited from organization located in black communities or organizations that service black identified persons (services specifically for blacks identified persons). participants were invited to complete a screening eligibility form during the on-site training meetings. trained study team members attended on-site staff meetings to explain the purpose of the study and what participation entailed. study team members obtained written informed consent from all health personnel who were eligible and interested to participate. procedure all study procedures were approved by the unity health toronto’s research ethics board. participants were sent a survey link and unique login information through email to self-administer a brief questionnaire. participants were first asked basic demographic questions such as education level, age, length of time in the profession, gender, and occupation. participants were then asked about their perspectives for the decision support needs of black patients using the barriers & facilitators to implementing decision support for values-sensitive decisions tool (stacey, 2004). this 33-item statement measured health personnel’s attitudes towards patient’s participation in decision-making, their perceived role in supporting patients, and factors that influenced the provision of decision support. this measure has 7 levels of agreements. questions focused on factors influencing health personnel providing decision support to callers/patients facing more complex health decisions. examples of questions are “most [health personnel] are sensitive to the influence that their personal preferences can have on callers/ppatients’decision”, and “most [health personnel] feel their clinical judgement is too constrained by protocols”. this 33-item measure asked participants to indicate their level of agreement (i.e., agree, disagree, neutral) in the online survey. the survey asked a series of questions related to an individual’s self-perceived role in patients' decision-making, factors that influence whether and how to provide decision support to black patients, and their expectations about black patients' roles in making decisions for themselves. participants were then asked to list, in ranked order, starting with the highest priority, their top three: (a) barriers to their provision of decision support to patients, (b) barriers that make it difficult for black patients to obtain support in making their decision about whether to use hiv prep and (c) factors that would enable them to provide of prep decision support to black patients. this portion of the survey only accepted free-text responses for groups a, b, and c. participants were not given answer choices to select from in this section. analysis descriptive statistics were used to summarize demographic data, using frequencies and proportions. data from the survey were collapsed from seven response anchors into three response categories to adjust for small cell sizes. likert-type response anchors, such as strongly agree, agree, and mildly agree were recorded as "agree". strongly disagree, disagree, and mildly disagree were recorded as "disagree". qualitative data generated from the free text response items from groups a, b, and c, that were stated above (related to decision support) were examined and subjected to qualitative content analysis using a qsorting methodology (akhtar 348 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 danesh et al., 2008; gallagher & porock, 2010; powers & knapp, 2009). we used q sorting as our method of qualitative analysis because it allows for identifying subjective viewpoints that have not been well understood to act towards any implementation of evidence-based practice for health care (tiernon et al., 2017). responses from the participants were placed on a single index card (one response per card). each card was color-coded based on the specific group that generated that response (i.e., group a, b or c). additionally, each response card was numbered to indicate the priority rank that were assigned by the participant (1st, 2nd, or 3rd). for each question group, the response cards were organized further into subgroups based on their priority rank designation. for example, all the first ranked responses for group ‘a’ were arranged into a pile; the second and thirdranked responses for group ‘a’ were arranged together into its own single pile. starting with the priority ranked card pile, individual cards were collapsed into smaller sub-group-piles by identifying statements with overlapping conceptual meanings. discrepancies in interpretation were discussed between the first author and the last author until a resolution were reached. after all response cards were sorted into smaller distinctions, two analysts characterized the overall content of the cards into major topic categories. they continued this card content analysis for the remaining two question groups (i.e. groups b and c). the two analysts arrived at a consensus of the subgroups for each of the group questions. the subgroups were concluded upon final analysis (tables 5 & 6). results a total of 24 hcps participated in this study. table 1 summarizes the demographic characteristics of the sample, including the distribution of their occupations. table 2 displays the distributions of participants' involvement across the prep care continuum. at least half of the participants were female, between 30-39 years of age, had more than two years of professional work experience at their organization. with the perspectives on decision support needs of black patients (table 3), we found that 66% of hcp disagree with the assumption that black patients prefer hcp to decide for the patient about whether to use hiv prep. also shown was that 75% of the hcp believe that supporting black patients who are deciding whether to use hiv prep will increase patients' involvement in making these decisions. in addition, over 90% of hcps concluded that supporting black patients making decisions about whether to use hiv prep will stimulate them to ask more questions than they would have otherwise asked. secondly, the perspectives on providing decision support to black patients (table 4), we found the level of agreement hcp had for supporting the decision to use prep for black-identified patients. more than 80% expressed not having enough training in orientation to feel prepared for supporting black patients facing decisions about whether to use hiv prep. also, 66% of hcp are not familiar with the novel decision support system of healthwise knowledge base (2007) decision point to facilitate prep delivery to black patients. it was shown that over 95% of hcp acknowledged a need to enhance their knowledge about supporting black patients with making decisions about whether to use hiv prep. furthermore, priority ranking of the barriers and facilitators to prep decision support (table 5), we found that hcp encounter 3 highly ranked barriers in, chronological order; lack of capacity or experience working with black patients, lack of knowledge about available resources for prep and how to access them, and adequate time. the highly ranked necessity for hcp to provide decision support are to enhance the capacity for working with black patients. lastly, barriers to black patients receiving decision support for prep (table 6) we identified barriers that hcps believed made it difficult for black patients to receive decision support. it is shown that hcps identified that the most prominent barrier that blackidentified patients faced in receiving prep were due to hcp deficits. discussion and implications the purpose of this study was to explore decision support from hcps perspectives to provide further insight key factors that are essential to decision support of prep usage among black patients in canada. our study findings suggested that decision support from hcps is more than a knowledge gap. the 349 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 data suggests that provision of prep decision support to black patients requires a basic comfort level and cultural humility gap for being able to provide decision support to black patients. similar to the national health institute’s definition of cultural humility, it’s essence and nature can be further expressed as a process of self-awareness, openness, and being egoless in order to incorporate selfreflection and critique after an interaction with “diverse individuals” (foronda et al., 2016) achieving cultural humility can present itself as mutual empowerment, partnerships, respect, optimal care, and lifelong learning among hcp engagement dyads in the clinical space (chang et al., 2012; foronda et al., 2016). considering comfort levels and cultural humility as additional influential barriers for hcp, is consistent with a study that underscores this pattern among internal medicine (im) residents (across four u.s. programs); that are eligible to provide prep. although 96% of im residents had heard of prep, only 25% had prior training to provide prep to patients, however future research should investigate the effects of hcps comfort levels in the clinical space proving hiv care the black patients. unfortunately, this study excluded the lenses of racial and ethnic classifications when expressing their lack of comfort for providing prep care (terndrup et al., 2019). research regarding improving hcp capacity to provide hiv services to black populations is crucial, especially when considering that previous studies have provided evidence of discrimination in hiv clinical spaces (algarin et al., 2020; brincks et al., 2019; cressman et al., 2020; irvin et al., 2014; mccree et al., 2021, pp. 2018–2019). these studies have hinted towards the additional barriers, such as low comfort levels or cultural competence, that may be linked to racial discrimination. hence, expressed by numerous hiv treatment studies hptn 061--not addressing gaps for providing hiv care to black patients can result in discontinuation in the engagement of the hiv care continuum. this undermines the global goal of ending the aids epidemic (90-90-90: an ambitious treatment target to help end the aids epidemic, n.d.). thus, because our study applied the lenses of race, culture, and ethnicity to capture hcps’ decision support approaches, future studies should investigate clinical policies; that to which allow the flourishment of cultural humility among those giving hiv care. healthcare providers’ lack of capacity in working with this population of interest, which underscores the gaps for appropriate hiv care continuum engagements. as this is a specialized area of care, identifying the gaps in these treatment spaces can begin to address weaknesses in current healthcare policies. allowing more appropriate healthcare policies amendments that are grounded and reflective of cultural humility, is promising for providing decision support for black identified persons in the clinical space. future policies that can direct and support hcps’ future interpretive approaches in the clinical space, can reveal the logic of inquiry to mitigate minoritized negative experiences (hiv care continuum, 2021). the findings of this study demonstrate that hcp have identified several barriers that prevent them from providing prep decision support to at-risk black patients. this study contributes to the literature by addressing the various perspectives that hcp have towards providing prep decision support to black patients. in addition, the findings contribute to identifying factors that hinder prep uptake in canada as earlier studies were conducted in the u.s. and, there are very limited research reported from canada on these issues. findings from our study suggest that hcp are aware of the gap for providing decision support for black patients, and struggle with how to effectively address this matter. furthermore, most hcps disagreed with removing decision autonomy from black patients and instead supported shared responsibility for making decisions about whether to use hiv prep (table 3). enhancing the autonomy of black patients is a crucial step in prep decision support, as it addresses one of the three basic human psychological needs required to optimize health identified in the sdt. two-thirds of hcp agreed that they would prefer clear step-by-step approaches to provide prep decision support for black patients. a suggestion is having healthcare institutions provide hcp training for decision support through the system of healthwise knowledge base (2007; nelson et al., 2020. this can guide hcp who struggle in recognizing when black patients are having difficulties making decisions about whether to use prep (table 4). 350 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 in addition, participants reported that healthcare settings are not conducive to facilitating discussion on prep decision support with black patients. time emerged as a major determinant of decision support in the results. the majority of hcp reported feeling pressured to keep patient visits short and thus were unable to develop decision support skills (table 4). it is often the lack of adequate time during routine consultations (which includes prep assessment and decision support) in hcp's schedule that can have negative consequences (burnett et al., 2011; howie et al., 1991; irving et al., 2017; tai-seale et al., 207). time constraints have been identified as a key barrier to prep uptake and provision in previous studies (chou et al., 2019; grant et al., 2010; 2014). with the support of healthcare institutions, hcp' should strategically allocate time in their routine consultations to initiate prep discussions, increase prep awareness and knowledge to provide decision support to black patients (chou et al., 2019). from the results, the majority of hcp believe that black patients preferred to make their own decision about whether to use prep after seriously considering their hcp's opinions. from the study results, we identified the desire hcp have towards meeting the psychological needs of black patients to optimize well-being. however, hcps’ lack of awareness of personal biases and prejudices is a major barrier to providing decision support to black patients and can inhibit any enhancement of capacity building which is a top barrier for providing decision support to black patients (table 5). the information hcp choose to share or withhold with their patients, the use of cultural humility responsive approaches, and the emphasis of freedom and choice (decision support) are all mediated by hcp internal biases and prejudices. thus, building capacity to adequately serve and provide prep decision support to black patients must be improved. according to the world health organization, capacity building involves actions towards 'advancement of knowledge and skills among practitioners; the expansion of support and infrastructure for health promotion in organizations, and the development of cohesiveness and partnerships for health in communities to improve health (smith et al., 2006). the relationship and relevance of training, experience, knowledge base and competence towards sexual health have been documented in several studies (canada 2014; 2019; the epidemiology of hiv, 2018). these studies demonstrated that hcps' knowledge, confidence, and competence correlate with readiness and willingness to provide decision support and prescribe prep (haddad et al., 2019; nelson et al., 2019). our study findings in conjunction with those from prior studies, highlight several strategies and interventions that might be instrumental in enhancing hcps' readiness and willingness to provide decision support and initiate prep. continuous education and training interventions that provide information on prep safety could reduce hcp's concerns and boost their confidence in providing decision support and meeting black patients' needs. since this is a cross sectional study, generalizability is a challenge that may not be representative of the study population. in addition, causation cannot be determined from participants. future studies should further investigate the various outcomes produced in this study to draw causational conclusion regarding hcp response for barrier and facilitators of prep decision support among black patients. healthcare providers’ lack of capacity in working with this black patient demonstrates significant gaps in appropriate engagement with the hiv care continuum. as this is a specialized area of care, highlighting the gaps in these treatment spaces can identify weaknesses in current healthcare policies, allowing room for more appropriate healthcare policies amendments that are grounded in cultural humility for providing decision support to black patients. ongoing issues of anti-black racism and decades of negative impacts from healthcare institutions have determined the living circumstances and health choices of black populations (ramos et al., 2019). moreover, these approaches and outlooks have translated into health outcomes, presenting as the health issues and treatments that black populations face, including hiv. hence, future policies that can direct and support cultural humility in hcps’ work in the prep decision support, and which mitigate negative experiences amongst black patients, are sorely needed to drastically prevent new hiv infections in this population (hiv care continuum, 2021). 351 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 conclusion more focus on an upstream approach for mitigating health disparities among black patient/persons seeking hiv care is need now more than ever; especially given the current events that highlight racially perpetuated health disparities. the result of this study also demonstrates that gaps in clinical spaces for delivering hiv care; these gaps in care have likely been exacerbated by the covid-19 pandemic (both in-person and virtually). improving hcps’ prep decision support capacity for black patients will need new healthcare policies that are fixated on ‘threading the common good’ to achieve optimal hiv care engagement. within the healthcare treatment space, understanding barriers and facilitators, including those related to hcps’ cultural humility and comfort levels discussing prep with their black patients, can illuminate strategies and pathways for more holistic hiv health care delivery. creating an environment where both hcp and patient can engage with one another safely and openly, and where hcp are held accountable in providing quality prep decision support, can be established by healthcare policies that determine the decision support approaches given to the patient from the hcp. it is imperative that cultural humility and comfort levels be considered as part of evaluating hcps’ ‘common good’ integration with the care they provide. meaning, higher accountability to hcps to provide decision support of prep for black identified persons in complementary for culturally providing humility care to black patients. this will inform the directions for future patient-hcp engagement. the urgency of the matter is palpable as these patient populations are already experiencing numerous societal vulnerabilities in health. references algarin, a. b., sheehan, d. m., varas-diaz, n., fennie, k. p., zhou, z., spencer, e. c., cook, r. l., morano, j. p., & ibanez, g. e. (2020). health care-specific enacted hiv-related stigma’s association with antiretroviral therapy adherence and viral suppression among people living with hiv in florida. aids patient care and stds, 34(7), 316–326. akhtar-danesh, n., baumann, a., & cordingley, l. (2008). q-methodology in nursing research: a promising method for the study of subjectivity. western journal of nursing research, 30(6), 759–773. https://doiorg.proxy.library.nyu.edu/10.1177/0193945 907312979 american institutes for research. 2002. teaching cultural competence in health care: a review of current concepts, policies, and practices. report prepared for the office of minority health. werehington, dc: author. an online decision support tool with a personal touch, accessible 24/7: healthwise® knowledgebase.http://www.aetna.com/pro ducer/aetnalink/200705/linkmm_2q07_encyclopedia.html. accessed may 19, 2020. brincks, a. m., shiu-yee, k., metsch, l. r., del rio, c., schwartz, r. p., jacobs, p., osorio, g., sorensen, j. l., & feaster, d. j. (2019). physician mistrust, medical system mistrust, and perceived discrimination: associations with hiv care engagement and viral load. aids and behavior, 23(10), 2859–2869. https://doi.org/10.1007/s10461-019-024641 burnett, s. j., deelchand, v., franklin, b. d., moorthy, k., & vincent, c. (2011). missing clinical information in nhs hospital outpatient clinics: prevalence, causes and effects on patient care. bmc health services research, 11, 114. https://doiorg.proxy.library.nyu.edu/10.1186/14726963-11-114 calabrese, s. k., earnshaw, v. a., krakower, d. s., underhill, k., vincent, w., magnus, m., hansen, n. b., kershaw, t. s., mayer, k. h., betancourt, j. r., & dovidio, j. f. (2018). a closer look at racism and heterosexism in medical students’ clinical decision-making related to hiv pre-exposure prophylaxis (prep): implications for prep education. aids and behavior, 22(4), 1122–1138. https://doiorg.proxy.library.nyu.edu/10.1007/s10461017-1979-z canada, p. (2014, november 28). government of canada. retrieved november 04, 2020, from https://www.canada.ca/en/publichealth/services/hiv-aids/publications/epiupdates/chapter-1-national-hiv-prevalenceincidence-estimates-2011.html 352 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 canada, p. (2019, january 11). government of canada. retrieved november 04, 2020, from https://www.canada.ca/en/publichealth/services/publications/diseasesconditions/summary-estimates-hivincidence-prevalence-canadas-progress-9090-90.html chou, r., evans, c., hoverman, a., sun, c., dana, t., bougatsos, c., grusing, s., & korthuis, p. t. (2019). preexposure prophylaxis for the prevention of hiv infection: evidence report and systematic review for the us preventive services task force. jama, 321(22), 2214– 2230. https://doiorg.proxy.library.nyu.edu/10.1001/jama.20 19.2591 deci, e. l., & ryan, r. m. (2012). self-determination theory. in p. a. m. van lange, a. w. kruglanski, & e. t. higgins (eds.), handbook of theories of socia l psychology (p. 416– 436). sage publications ltd. https://doi.org/10.4135/9781446249215.n2 1 fact sheet by e-mail. the epidemiology of hiv in canada the number of people with hiv in canada (prevalence) is increasing. 1.; 2018. gallagher, k., & porock, d. (2010). the use of interviews in q methodology: card content analysis. nursing research, 59(4), 295–300. https://doiorg.proxy.library.nyu.edu/10.1097/nnr.0b0 13e3181e4ffff chang, e. -shien, simon, m., & dong, x. (2012). integrating cultural humility into health care professional education and training. advances in health sciences education: theory and practice, 17(2), 269–278. https://doi.org/10.1007/s10459-010-9264-1 cressman, a. e., howe, c. j., nunn, a. s., adimora, a. a., williams, d. r., kempf, m.-c., chandran, a., wentz, e. l., blackstock, o. j., kassaye, s. g., cohen, j., cohen, m. h., wingood, g. m., metsch, l. r., & wilson, t. e. (2020). the relationship between discrimination and missed hiv care appointments among women living with hiv. aids and behavior, 24(1), 151–164. https://doi.org/10.1007/s10461-019-025228 cressman, a. e., howe, c. j., nunn, a. s., adimora, a. a., williams, d. r., kempf, m.-c., chandran, a., wentz, e. l., blackstock, o. j., kassaye, s. g., cohen, j., cohen, m. h., wingood, g. m., metsch, l. r., & wilson, t. e. (2020). the relationship between discrimination and missed hiv care appointments among women living with hiv. aids and behavior, 24(1), 151–164. https://doi.org/10.1007/s10461-019-025228 foronda, c., baptiste, d.-l., reinholdt, m. m., & ousman, k. (2016). cultural humility: a concept analysis. journal of transcultural nursing, 27(3), 210–217. https://doi.org/10.1177/104365961559267 7 grant, r. m., anderson, p. l., mcmahan, v., liu, a., amico, k. r., mehrotra, m., hosek, s., mosquera, c., casapia, m., montoya, o., buchbinder, s., veloso, v. g., mayer, k., chariyalertsak, s., & bekker, l. g. (2014). uptake of pre-exposure prophylaxis, sexual practices, and hiv incidence in men and transgender women who have sex with men: a cohort study. lancet infectious diseases, 9, 820. grant, r. m., lama, j. r., anderson, p. l., mcmahan, v., liu, a. y., vargas, l., goicochea, p., casapía, m., guanira-carranza, j. v., ramirez-cardich, m. e., montoya-herrera, o., fernández, t., veloso, v. g., buchbinder, s. p., chariyalertsak, s., schechter, m., bekker, l.-g., mayer, k. h., kallás, e. g., … glidden, d. v. (2010). preexposure chemoprophylaxis for hiv prevention in men who have sex with men. new england journal of medicine, 363(27), 2587–2599. https://doiorg.proxy.library.nyu.edu/10.1056/nejmoa 1011205 haddad, n., robert, a., weeks, a., popovic, n., siu, w., & archibald, c. (2019). hiv in canadasurveillance report, 2018. canada communicable disease report, 45(12), 304. howie, j. g., porter, a. m., heaney, d. j., & hopton, j. l. (1991). long to short consultation ratio: a proxy measure of quality of care for general practice. the british journal of general practice: journal of the royal college of general practitioners, 41(343), 48–54. irving, g., neves, a. l., dambha-miller, h., oishi, a., tagashira, h., verho, a., & holden, j. (2017). https://doi-org.proxy.library.nyu.edu/10.1097/nnr.0b013e3181e4ffff https://doi-org.proxy.library.nyu.edu/10.1097/nnr.0b013e3181e4ffff https://doi-org.proxy.library.nyu.edu/10.1097/nnr.0b013e3181e4ffff https://doi.org/10.1007/s10459-010-9264-1 https://doi.org/10.1007/s10461-019-02522-8 https://doi.org/10.1007/s10461-019-02522-8 https://doi.org/10.1007/s10461-019-02522-8 https://doi.org/10.1007/s10461-019-02522-8 353 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 international variations in primary care physician consultation time: a systematic review of 67 countries. bmj open, 7(10), e017902. https://doiorg.proxy.library.nyu.edu/10.1136/bmjopen -2017-017902 laura nyblade, krishnamachari srinivasan, amanda mazur, tony raj, divya s. patil, dhinagaran devadass, kedar radhakrishna, & maria l. ekstrand. (2018). hiv stigma reduction for health facility staff: development of a blendedlearning intervention. frontiers in public health, 6. https://doiorg.proxy.library.nyu.edu/10.3389/fpubh.2 018.00165 levy, m. e., wilton, l., phillips, g., 2nd, glick, s. n., kuo, i., brewer, r. a., elliott, a., watson, c., & magnus, m. (2014). understanding structural barriers to accessing hiv testing and prevention services among black men who have sex with men (bmsm) in the united states. aids and behavior, 18(5), 972–996. https://doiorg.proxy.library.nyu.edu/10.1007/s10461014-0719-x nelson le, wilton l, agyarko-poku t, zhang n, zou y, aluoch m, et al. (2015) predictors of condom use among peer social networks of men who have sex with men in ghana, west africa. plos one 10(1): e0115504. https://doi.org/10.1371/journal.pone.0115 504 irvin, r., wilton, l., scott, h., beauchamp, g., wang, l., betancourt, j., lubensky, m., wallace, j., & buchbinder, s. (2014). a study of perceived racial discrimination in black men who have sex with men (msm) and its association with healthcare utilization and hiv testing. aids and behavior, 18(7), 1272–1278. https://doi.org/10.1007/s10461-014-0734-y mccree, d. h., beer, l., jeffries, w. l., tie, y., fagan, j., & crim, s. m. (2021). sociodemographic correlates of self-reported discrimination in hiv health care settings among persons with diagnosed hiv in the united states, medical monitoring project, 2018-2019. journal of acquired immune deficiency syndromes (1999). https://doi.org/10.1097/qai.000000000000 2788 nelson, l. e., ajiboye, w., djiadeu, p., odhiambo, a. j., pedersen, c., ramos, s. r., lofters, a., mbuagbaw, l., & williams, g. (2020). a webbased intervention to reduce decision conflict regarding hiv pre-exposure prophylaxis: protocol for a clinical trial. journal of medical internet research, 22(6), n.pag. https://doiorg.proxy.library.nyu.edu/10.2196/15080 nelson, l. e., tharao, w., husbands, w., sa, t., zhang, n., kushwaha, s., absalom, d., & kaul, r. (2019). the epidemiology of hiv and other sexually transmitted infections in african, caribbean and black men in toronto, canada. bmc infectious diseases, 19(1), 294. https://doi.org/10.1186/s12879-019-3925-3 ng, j. y. y., ntoumanis, n., thøgersen-ntoumani, c., deci, e. l., ryan, r. m., duda, j. l., & williams, g. c. (2012). self-determination theory applied to health contexts: a metaanalysis. perspectives on psychological science : a journal of the association for psychological science, 7(4), 325–340. https://doiorg.proxy.library.nyu.edu/10.1177/1745691 612447309 nunn, a. s., brinkley-rubinstein, l., oldenburg, c. e., mayer, k. h., mimiaga, m., patel, r., & chan, p. a. (2017). defining the hiv pre-exposure prophylaxis care continuum. https://doiorg.proxy.library.nyu.edu/10.1097/qad.000 0000000001385 patrick, h., & williams, g. c. (2012). selfdetermination theory: its application to health behavior and complementarity with motivational interviewing. the international journal of behavioral nutrition and physical activity, 9(18). https://doiorg.proxy.library.nyu.edu/10.1186/14795868-9-18 powers, b. a., & knapp, t. r. (2009). dictionary of nursing theory and research. 3rd ed. new york, ny: springer pub. co. ramos, s. r., warren, r., shedlin, m., melkus, g., kershaw, t., & vorderstrasse, a. (2019). a framework for using ehealth interventions to overcome medical mistrust among sexual minority men of color living with chronic conditions. behavioral medicine, 45(2), 166–176. https://doi.org/10.1007/s10461-014-0734-y 354 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 https://doi.org/10.1080/08964289.2019.15 70074 sidebottom, d., ekström, a. m., & strömdahl, s. (2018). a systematic review of adherence to oral pre-exposure prophylaxis for hiv how can we improve uptake and adherence? bmc infectious diseases, 18(1), 581. https://doiorg.proxy.library.nyu.edu/10.1186/s12879018-3463-4 smith bj, tang kc, & nutbeam d. (2006). who health promotion glossary: new terms. health promotion international, 21(4), 340–345. https://doi.org/10.1093/heapro/dal033 stacey, d. (2004). sample tool: barrier & facilitators to implementing decision support for valuessensitive decisions. available online from www.ohri.ca/decisionaid sufrin, j. (2019, november 5). 3 things to know: cultural humility. hogg foundation. https://hogg.utexas.edu/3-things-to-knowcultural-humility tai-seale, m., mcguire, t. g., & zhang, w. (2007). time allocation in primary care office visits. health services research, 42(5), 1871–1894. terndrup, c., streed, c. g., tiberio, p., black, m., davis, j., apfel, a., blackstock, o. j., edelman, e. j., & berkenblit, g. (2019). a crosssectional survey of internal medicine resident knowledge, attitudes, behaviors, and experiences regarding pre-exposure prophylaxis for hiv infection. journal of general internal medicine, 34(7), 1258– 1278. https://doi.org/10.1007/s11606-01904947-2 thigpen, m. c., kebaabetswe, p. m., paxton, l. a., smith, d. k., rose, c. e., segolodi, t. m., henderson, f. l., pathak, s. r., soud, f. a., chillag, k. l., mutanhaurwa, r., chirwa, l. i., kasonde, m., abebe, d., buliva, e., gvetadze, r. j., johnson, s., sukalac, t., thomas, v. t., … brooks, j. t. (2012). antiretroviral preexposure prophylaxis for heterosexual hiv transmission in botswana. the new england journal of medicine, 367(5), 423– 434. https://doiorg.proxy.library.nyu.edu/10.1056/nejmoa 1110711 tiernon, p., hensel, d., & roy-ehri, l. (2017). using q methodology in quality improvement projects. journal of obstetric, gynecologic, and neonatal nursing : jognn, 46(4), 601– 608. https://doi.org/10.1016/j.jogn.2017.04.133 van damme, l., corneli, a., ahmed, k., agot, k., lombaard, j., kapiga, s., malahleha, m., owino, f., manongi, r., onyango, j., temu, l., monedi, m. c., mak’oketch, p., makanda, m., reblin, i., makatu, s. e., saylor, l., kiernan, h., kirkendale, s., … taylor, d. (2012). preexposure prophylaxis for hiv infection among african women. new england journal of medicine, 367(5), 411– 422. https://doiorg.proxy.library.nyu.edu/10.1056/nejmoa 1202614 zhabokritsky, a., nelson, l. e., tharao, w., husbands, w., sa, t., zhang, n., thomas-pavanel, j., baidoobonso, s., & kaul, r. (2019). barriers to hiv pre-exposure prophylaxis among african, caribbean and black men in toronto, canada. plos one, 14(3), 1 http://www.ohri.ca/decisionaid 355 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 table 1. participant characteristics characteristic category % (n) age † under 29 20.8 (5) 30 to 39 50.0 (12) 40 to 49 16.7 (4) 50 to 59 8.3 (2) gender male 37.5 (9) female 58.3 (14) other 4.2 (1) education completed college diploma 4.2 (1) undergraduate university degree 33.3 (8) graduate university degree – medical school 37.5 (9) graduate university degree other 25.0 (6) length of time in profession less than 2 years 8.3 (2) 2 to 5 years 33.3 (8) 6 to 10 years 29.2 (7) 11 to 15 years 8.3 (2) 16 to 20 years 12.5 (3) 20 to 25 years 8.3 (2) position in organization nurse 25.0 (6) 356 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 nurse practitioner 4.2 (1) physician 37.5 (9) social worker 4.2 (1) other ‡ 29.2 (7) length of employment at organization less than 2 years 41.7 (10) more than 2 years 58.3 (14) employment type full-time 75 (18) regular part-time 25 (6) † one participant did not indicate age ‡ other included: community health worker, hiv point of care tester, physician assistant, poc testing coordinator, prevention coordinator, support worker 357 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 table 2. areas of involvement % (n) 1. identifying individuals at highest risk for contracting hiv 100 (24) 2. increasing hiv risk awareness among those individuals 100 (24) 3. enhancing prep awareness 100 (24) 4. facilitating prep access 83.3 (20) 5. linking to prep care 70.8 (17) 6. prescribing prep 50 (12) 7. prep clinical management 66.7 (16) 8. retaining individuals in prep care 70.8 (17) 9. supporting prep adherence 83.3 (20) 358 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 table 3. decision support: provider perspectives on clients item † disagree neutral agree % (n) % (n) % (n) 1. most black patients prefer to make the decision about whether to use hiv prep on their own. 37.5 (9) 33.3 (8) 29.2 (7) 2. most black patients prefer to make the decision about whether to use hiv prep after seriously considering their health personnel's (hcps) opinion. 8.3 (2) 25.0 (6) 66.70 (16) 3. most black patients prefer to share the responsibility for making decisions about whether to use hiv prep with their hcp. 16.7 (4) 29.2 (7) 54.2 (13) 4. most black patients prefer their hcps make the decision about whether to use hiv prep after seriously considering their opinion. 41.7 (10) 41.7 (10) 16.7 (4) 5. most black patients prefer their hcp to make the decision about whether to use hiv prep for them. 66.7 (16) 25.0 (6) 8.3 (2) 6. hcps supporting black patients who are deciding whether to use hiv prep will increase patients' involvement in making these decisions. 0.0 (0) 25.0 (6) 75.0 (18) 7. a physician-patient discussion about hiv prep is improved when a patient comes prepared. 4.2 (1) 20.8 (5) 75.0 (18) 8. hcps supporting black patients making decisions about whether to use hiv prep will stimulate them to ask more questions than they would have otherwise asked. 4.2 (1) 4.2 (1) 91.7 (22) 9. most black patients are aware that they can get support to prepare for making decisions about whether to use hiv prep by visiting a sexual health clinic. 45.8 (11) 20.8 (5) 33.3 (8) 359 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 10. most black patients are aware that they can get support to prepare for making decisions about whether to use hiv prep by visiting online resources provided by the drug manufacturer. 62.5 (15) 20.8 (5) 16.7 (4) 11. most black patients should be referred to online resources in preparation for making decisions about whether to use hiv prep. 41.7 (10) 25.0 (6) 33.3 (8) 12. most hcps are able to support black patients making decisions about whether to use hiv prep most of the time (at least 66% of the time). 41.7 (10) 16.7 (4) 41.7 (10) † 7-point scale ranging from strongly disagree (1) to strongly agree (7) 360 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 table 4. health personnel perspectives on delivering prep to black patients item† disagree neutral agree % (n) % (n) % (n) 1. most hcps need to enhance their knowledge about supporting black patients with making decisions about whether to use hiv prep. 0.0 (0) 4.2 (1) 95.8 (23) 2. most hcps are confident in their ability to support black patients with making decisions about whether to use hiv prep. 50.0 (12) 29.2 (7) 20.8 (5) 3. hcps have access to good ‡ resources to support black patients with making decisions about whether to use hiv prep. 54.2 (13) 16.7 (4) 29.2 (7) 4. for black patients making decisions about whether to use hiv prep, most hcps are confident in guiding patients in the steps for making a decision. 54.2 (13) 16.7 (4) 29.2 (7) 5. there are too few visits about whether to use hiv prep for most hcps to develop their decision support skills. 29.2 (7) 12.5 (3) 58.3 (14) 6. most hcps find it difficult to recognize black patients having difficulty making decisions about whether to use hiv prep. 12.5 (3) 29.2 (7) 58.3 (14) 7. most hcps are familiar with the healthwise knowledge base decision points 66.7 (16) 25.0 (6) 8.30 (2) 361 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 8. most hcps are sensitive to the influence that their personal preferences can have on black patients' decisions about whether to use hiv prep. 62.5 (15) 12.5 (3) 25.0 (6) 9. most hcps receive enough training in orientation to feel prepared for supporting black patients facing decisions about whether to use hiv prep. 87.5 (21) 4.20 (1) 8.30 (2) 10. most hcps would identify a need to participate in continuing education about supporting black patients with making decisions about whether to use hiv prep. 29.2 (7) 12.5 (3) 58.3 (14) 11. most hcps feel constant pressure to minimize visit length. 12.5 (3) 8.3 (2) 79.2 (19) 12. most hcps feel confident in their ability to manage differences between what the hcp or physician thinks is a "good" decision and what the patient prefers. 8.3 (2) 25.0 (6) 66.7 (16) 13. most hcps need to enhance their ability to support black patients in handling conflicting views about the decision about whether to use hiv prep from significant others. 4.2 (1) 12.5 (3) 83.3 (20) 14. most hcps would prefer to have a clear step by step approach to use for supporting black patients about whether to use hiv prep. 8.3 (2) 25.0 (6) 66.7 (16) 15. sending written information to black patients would enhance the decision support provided by hcps. 20.8 (5) 29.2 (7) 50.0 (12) 362 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 16. most hcps validate black patients' views/values associated with the decision about whether to use hiv prep. 37.5 (9) 29.2 (7) 33.3 (8) 17. most hcps feel their clinical judgement is too constrained by protocols. 45.8 (11) 25.0 (6) 29.2 (7) †7-point scale ranging from strongly disagree (1) to strongly agree (7). ‡understandable, evidence-based, accurate, up-to-date, balanced information on benefits and harms, nonbiased. 363 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 table 5. barriers and facilitators to providing prep decision support by healthcare staff occupation barriers nurses (n =7) physicians (n =9) social worker (n =1) physician assistant (n =1) non-licensed personnel (n =6) time 6 (85.7%) 5 (55.5%) 0 0 0 lack of experience working with black patient 4 (57.1%) 5 (55.5%) 1 (100%) 0 4 (66.6%) knowledge about prep 3 (42.8%) 2 (22.2%) 1 (100%) 1 (100%) 2 (33.3%) costs of medication 1 (14.2%) 4 (44.4%) 0 1 (100%) 1 (16.6%) concern about patient ability to adhere 0 0 0 1 (100%) 1 (16.6%) lack of knowledge about available resources for prep and how to access them 1 (14.2%) 7 (77.7%) 0 0 3 (50.0%) ability to create an environment that is safe engage in discussion related to sexual behaviour 2 (28.5%) 2 (22.2%) 1 (100%) 0 2 (33.3%) facilitators more time in appointment 4 (57.1%) 4 (44.4%) 0 0 1 (16.6%) 364 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 establishing rapport with patients 1 (14.2%) 2 (22.2%) 0 0 1 (16.6%) enhance capacity for working with black patients 3 (42.8%) 2 (22.2%) 1 (100%) 0 5 (83.3%) patients coming prepared with knowledge about their risks and prep1 0 4 (44.4%) 0 0 0 more education about prep for health personnels 2 (28.5%) 4 (44.4%) 0 1 (100%) 2 (33.3%) knowledge about available resources for prep and how to access them1 3 (42.8%) 4 (44.4%) 0 0 2 (33.3%) online resources/reference tools 1 (14.2%) 2 (22.2%) 1 (100%) 0 0 knowing that costs of prep will be covered 0 2 (22.2%) 0 1 (100%) 0 working within a team of hcps who are knowledgeable about prep 0 0 0 0 2 (33.3%) 365 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 knowing that patient can/will be compliant with prep care protocol 0 1 (11.1%) 0 0 1 (16.6%) 366 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 table 6. perceived barriers to black patients receiving prep decision support perceived barriers that make it difficult for black patients to receive decision support occupation nurses (n =7) physicians (n =9) social worker (n =1) physician assistant (n =1) non-licensed personnel (n =6) reduced access to health personnel 4 (57.1%) 5 (55.5%) 0 1 (100%) 2 (33.3%) knowledge deficit 2 (28.5%) 2 (22.2%) 0 0 2 (33.3%) in adequate support network 2 (28.5%) 3 (33.3%) 0 0 0 systemic discrimination 4 (57.1%) 0 0 0 0 cost 1 (14.2%) 5 (55.5%) 0 1 (100%) 3 (50.0%) potential side effects 1 (14.2%) 1 (11.1%) 0 0 0 inability to adhere to protocols 1 (14.2%) 2 (22.2%) 0 1 (100%) 1 (16.6%) literacy 0 2 (22.2%) 0 0 0 367 ihtp, 1(3), 345-367, 2021 cc by-nc-nd 4.0 issn 2563-9269 reduced to accessibility to prep resources 1 (14.2%) 2 (22.2%) 0 0 5 (83.3%) stigma 2 (28.5%) 2 (22.2%) 1 (100%) 0 2 (33.3%) issn 2563-9269 17 two educators reflect on their immigration experience through creative writing jasna k. schwind1, oi ling helen kwok 2 1daphne cockwell school of nursing, ryerson university, ryerson university, toronto, ontario, canada; 2school of arts and science, seneca college, toronto, ontario, canada corresponding author: j. k. schwind (jschwind@ryerson.ca) abstract following dewey’s philosophy of experience that all our life events inform how we evolve, both personally and professionally, two educators reflect on their immigration experiences. being uprooted from one’s place of birth to another, at an oftentimes turbulent stage of development, young people face challenges in finding their sense of belonging. we engage in creative writing to reflect on our respective experiences of immigration to canada to support our scholarship of teaching and learning. using dewey’s three criteria of experience: continuity, relationship, and situation, and connelly and clandinin’s narrative inquiry self-study framework, we delve deeper into understanding how the transplantation from one continent to another continues to affect who we are today as persons and professionals. this critical reflection is of further value to us as educators in gaining a greater appreciation for our students’ experiences, many of whom live their own stories of immigration. in doing so, we hope to more effectively support and encourage students, not only to survive, but to thrive in their new landscape. we trust our work will be, likewise, of service to educators worldwide who want to engage in their own inquiry of personally significant life events, and thus support the same in their students. keywords creative writing, education, experience, immigration, reflection background life’s nodal events have equal potential for great learning, growth, and connection, as well as for pain, loneliness, and longing. we often call these life turns, transitions. this term may denote different meanings for the reader, depending on the context and the lens through which it is examined. for our purposes, we define transition as moving from one landscape to another, as if transplanting a young tree from one garden to another. the young tree is uprooted and moved, with the hope it will continue to grow, and even thrive, in the new garden landscape. in this article we explore one such life transition: migration between countries and continents. in a similar vein, we use the term migration interchangeably with immigration and emigration to denote our personal ihtp, 1(1), 17-28, spring 2021 cc by-nc-nd 4.0 experiences of transplantation from our respective birth countries to canada. purpose & strategy we met at the university in 2015. helen, a graduate student in early childhood studies, was seeking a supervisor for her master’s thesis using narrative research. jasna, a senior professor and narrative researcher in the school of nursing, answered the call. today, as colleagues, we explore our shared immigrant experiences through critical reflection and creative writing. in this article, using the narrative inquiry self-study framework (connelly & clandinin, 1990, 2006), which issn 2563-9269 18 is informed by john dewey’s (1963/1938) three criteria of experience: continuity, relationship, and situation, we reflect on this significant life transition. in line with dewey’s philosophical perspective on experience and education, we believe that “without some reconstruction, some remaking” of our life experiences there is no intellectual evolution (dewey, 1963, p. 64). consequently, this reflective process serves to help us make sense of our respective lived immigrant experiences, while considering how this major personal event that took place in our early teenage years, continues to shape our personal and professional lives as educators, today. main points philosophical perspectives experience moves from being lived (ontology) to being articulated for the purposes of understanding and knowledge development (epistemology), and finally, based on critical reflection and intellectual deliberation, to being enacted in practice (praxis). in his important book, experience and education (1938/1963), dewey articulates his philosophy of experience, wherein he identifies three criteria of experience: continuity, relationship and situation. in other words, experience happens over time, in relationship, and in a particular location or a series of locations. this philosophical stance underpins the narrative inquiry research approach (connelly & clandinin, 1990), which guides our respective scholarship of education, discovery, and praxis. more specifically, in terms of continuity, dewey observed that “every experience enacted and undergone modifies the one who acts and undergoes, while this modification affects, whether we wish it or not, the quality of subsequent experiences” (1963, p. 35). this notion denotes experience as continuously unfolding and evolving. when intentionally reflected upon in the present moment, past experiences have the potential to positively inform one’s future ways of being, knowing, and doing. dewey identified these experiences as educative, a significant consideration when crafting teaching-learning encounters. experiences happen in relationship to self and to other. dewey noted that “all human experience is ultimately social: that it involves contact and communication” (1963, p. 38). in narrative inquiry we ihtp, 1(1), 17-28, spring 2021 cc by-nc-nd 4.0 recognize the value of our inner world and how that quality deepens our relationships and our understanding of the external environment. thus, the narrative inquiry self-study framework allows us to examine our own experiences in order to understand how they influence our relationships with others, including our students. as such, the personal-social interaction within a given context, creates the third criterion of experience, situation. notably, experience unfolds in a situation or a series of situations, often referred to as places (clandinin & connelly, 2000). when thought of in the context of migration, the individual experiences unfold over time, in relationship across diverse social contexts and physical landscapes. dewey wrote that “experience is always what it is because of a transition taking place between an individual and what, at the time, constitutes [their] environment” (1963, p. 43). stories of our life experiences, when reflected upon and shared with others, contribute to the development of humanistic relationships. thus, narrative inquiry facilitates teachers and students to tell their stories of experience, not only for their own learning, but that of others (schwind, 2008). clandinin and connelly (2000) believe that narratives should embrace an invitational component, encouraging readers to reflect on their own experience and practices, which promote potential positive changes in their lives. narrative inquiry self-study according to connelly and clandinin (1990), whose development of narrative inquiry qualitative research approach is heavily informed by dewey’s philosophy of experience, the closest we come to experience is through telling stories of that experience, thus creating the possibility for learning. using the narrative inquiry framework, the experiences are deconstructed into their component parts, critically reflected upon using scholarly literature, and then reconstructed with new meaning in place (clandinin & connelly, 2000). in other words, through that expanded understanding we create the potential to “transform our lives, and consequently the lives of those” in our educational care (schwind et al., 2012, p. 3). this perspective is supported by the recognition that our personal and professional lives are intimately issn 2563-9269 19 entwined and thus mutually informing (connelly & clandinin, 1988; dewey, 1963/1938; lindsay, 2008). reflective process is the keystone of self-study, a prominent approach for narrative inquiry (shields et al., 2011), especially when it allows inquirers to write about events and situations that connect their past and present, revealing the many layers of their own experiences. bullough and pinnegar (2001) note that self-study has the capacity to provide insight and guidance, helping readers learn from others’ experiences. they claim that “ultimately, the aim of self-study research is moral, to gain understanding necessary to make interaction increasingly educative,” not only enriching one’s own practice but that of others (p. 15). as such, educators are encouraged to turn inward and embark on a journey to connect and share their life stories, so that they and their students may be enriched (aksenchuk, 2020; shields et al., 2011). like dewey, and connelly and clandinin, dinkelman (2003) recognizes the value of reflective practice for educators. he writes that “self-study is not the whole of teaching, but it mirrors and systematizes that part of pedagogy that is reflection” (p. 9). this suggests that self-study can be a formalized form of reflection that is thoughtful and educative (di stasi, 2020). in dewey’s (1916) words, it is a “reconstruction or reorganization of experience which adds to the meaning of experience, and which increases ability to direct subsequent experience” (p. 76). clandinin and connelly (2004) agree that selfstudy “holds the highest possible potential for improving education” (p. 597). therefore, to be more effective educators, it behooves us to engage in self-study. through such self-reflective process we explore our own lived experiences, and thereby gain a deeper understanding of how our personal life events affect our professional relationships with students. thus, self-study can inform our practice and offer “insight and solution for public issues” (bullough & pinnegar, 2001, p. 15), with the view that we teach ourselves, so through that process others may learn (pinar, 1981). with the purpose of extracting a deeper meaning of the storied events, using narrative inquiry selfstudy, we enter into reflective dialogue with ourselves, with each other, and with the extant literature (schwind et al., 2012). this intraihtp, 1(1), 17-28, spring 2021 cc by-nc-nd 4.0 interpersonal engagement invites individuals to discover their way of being and to reconstruct their experiences through storytelling, as well as to coconstruct knowledge in relationship with each other. it is important, however, to maintain flexibility and openness to the ever-changing inner and outer landscapes, as we reconfigure our understanding of our life events. according to clandinin and connelly (2000), the inner landscape expresses our thoughts, feelings and hopes, and the outer landscape denotes social conditions and the physical environment. these landscapes are mutually informing and in dynamic engagement with the relational and temporal dimensions of experience. clandinin and connelly (2004) contend that a thoughtful self-study is a rich source of knowledge, because of the “experiential base of the self-knower, which has the potential to reveal the educational and professional landscape” (di stasi, 2020, p. 26). thus, understanding who we are as persons and educators through our lived experiences, we have the potential to disrupt the taken for granted perspectives (clandinin & connelly, 2000). bullough and pinnegar (2001) suggest that when we examine our stories of experience through self-study, it is no longer an individual endeavor, rather it becomes a coconstruction of knowledge that is socially significant that others can learn from. through reflection, individuals feel located and connected to their circumstance, which in turn cultivates increasing confidence in coping with changes that often feel like being betwixt and between. this liminal space of increased potentiality, where one is in transition between the previous way of being and the possibilities that are yet to be revealed, aligns with dewey’s (1929) notion of uncertainty. although the term disruption may have a negative connotation, all disruptions are opportunities for intentional reflection and learning on “how to live in the world” as a result of that experience (lindsay et al, 2016, p. 7). if this narrative inquiry self-study is working, readers will feel invited to engage in their own inquiry, considering significant life events in their own lives and how these inform their educational relationships. creative writing we recognize that stories may be articulated through various modes of expression, such as storytelling, issn 2563-9269 20 metaphors, creative writing, dance, visual art, and others (schwind, 2008; 2016). following dewey’s philosophy that experience is education, we reconstruct experience through creative writing to access tacit knowing (polanyi, 1966/2009; schwind, 2003; 2016; schwind & lindsay, 2016). eisner (2002) observed that “through the arts we learn to see what we had not noticed, to feel what we had not felt” (p. 12). in other words, our reflection on the role of immigration in our personal and professional lives was enhanced through creative self-expression, making “tangible manifestation of [our] thinking” (schwind & lindsay, 2016, p. 483). in this article we use creative writing, in the form of prose, as a way to access our lived experiences of immigration. in this segment we share two pieces of writing. although our respective immigration experiences took place during our teenage years, they happened decades apart and involved different continents. our writings, similarly, came into being many years apart, before we came to engage in the graduate supervision relationship. as each of us independently engaged in creative reflective writing, it was the language transition of the selected two pieces that inspired us to further reflect and collaborate on this work. over the months of crafting this reflective piece, we read each other’s writing and shared our experiences. we met numerous times to talk about our individual life and immigration experiences, exploring resonances and the notion of common humanity. our meetings were interspersed with individual reflection and pondering, thus deepening the reflective process. once the two key patterns emerged, we accessed research literature to deepen our understanding of how these patterns may inform, not only our, but immigrant experience as a whole. following the perspective that who we are as persons is who we are as professionals (connelly & clandinin, 1988), as educators, we were also curious how these two key patterns may inform our teaching-learning encounters. the first piece of writing is jasna’s expression of her immigration experience using poetic prose. the first part of this writing is in her mother tongue, croatian. as the writing progresses, the language changes from croatian to english, denoting the movement and acclimatization from one landscape to another. in the second piece of writing, helen ihtp, 1(1), 17-28, spring 2021 cc by-nc-nd 4.0 denotes her immigration experience. in like manner, helen writes aspects of her story in cantonese, as she transitions to the landscape of the new country. through our creative writing, we both express tensions as we transition from one place to another, and as we strive to survive and eventually thrive in our new landscape; what for us is a sense of belonging. longing to belong prije tridest-pet godina dođosmo tu [thirty-five years ago we arrived here] mutavi sa riječima …sami. [with muted words; alone] ošli u tuđi svit [we left for foreign land] graditi novo gnijezdo [to build a new nest] teško ostaviti rodni kraj …svoj govor, svoj narod. [it was difficult to leave our birthplace, our language, our kin.] i polako, korak po korak, mama veli. [and slowly, step by step, mom says.] we start to climb tata kaže, i to će proć [dad says, and that too shall pass] but, it’s hard work. new language. new people. new challenges. korak po korak … pa nije tako loše.[step by step … well, it’s not so bad] the old country all but faded loved ones tired of waiting for our return, leave this world while we’re busy working, making a living…surviving … our home is here now. we let our roots grow into this new soil … al’ stari kraj nam je još uvik u srcu … i u duši [but the old homeland is still in our hearts … and in our soul] we, the immigrants, the transplants, are of two worlds … of many worlds we seem to belong everywhere and yet, we belong nowhere … ~ii~ i ponder these thoughts as i think of my visit back this past june… ja nisam stranac tu na tom tlu.[i am not a stranger in this part of the world] svi me znaju. svi me razume.[everyone knows me, everyone understands me.] issn 2563-9269 21 and yet, when i speak, they ask me where i am from … because i have an accent… much time has elapsed since we left the old landscape, i see it through new eyes life experiences have intervened … i have changed … they have changed … life has moved on, like a river on its eternal journey to the sea… the same river, yet different… ~iii~ we, the fifth-dimension people, are often reflective …torn …longing to collect strewn pieces of ourselves … hoping to heal. we seem to belong nowhere, yet, we belong everywhere. ~j. k. schwind, 2004~ stepping stones leaving home for the new country i am seventeen years old. with two pieces of luggage and a dictionary, i arrive at toronto pearson international airport. alone. standing in front of an immigration officer, i am nervous and scared. at first, he is flipping through my passport and typing information into the computer. when he asks me the reason for my visit, my mind immediately answers, “ 我唻加拿大係為尋找我好好嘅將來” (i am here to search for a better future), but i hold back. i tell him i am here to study. “welcome to canada!” he says. this is how my life journey, as an immigrant, begins. transition there to here my favourite routine is walking through the falling snow to catch the bus to school. i enjoy having countless light, fluffy snowflakes softly land on my face. although they fall from great heights, they are gentle and sensitive, as if they recognize my struggles being an immigrant and try to comfort me. “today you will sit in a group of four to discuss the topic i place on your table”, says the professor. it is my turn to speak. while spending an extra minute to collect my thoughts, another classmate interrupts, “why don’t we come back to her, she doesn’t speak english. maybe she needs extra time to translate the topic.” my inner voice screams silently, “no! i fully understand what it means. i just need extra time to ihtp, 1(1), 17-28, spring 2021 cc by-nc-nd 4.0 put my thoughts together.” at the end, i never have a chance to speak. return home – tug of war, where do i belong? i am finally returning to visit my ‘home’ in hong kong. i feel the warmth and love as my mom and dad tightly embrace me in their arms. “嘩！你好似 轉變好多喎！” (you seem to have changed a lot!), they mumble. i tell them i am still the same person and daughter they knew before. i begin to share with them my life experiences in canada. they nod but look perplexed. my dad asks, “點解你啲中文表達能 力退步咗咁多嘅？我好難去完全明白你呀!” why do you have a hard time expressing yourself in cantonese? i am having trouble understanding you). his comment makes me feel puzzled and lost. in canada, my voice is not fully heard. in hong kong, my family has a hard time understanding me. i’m confused. where do i fit in? ~ oi ling kwok (2017) ~ reflection as educators, we believe that beginning with ourselves (hunt, 1987) serves to deepen our understanding of who we are as instruments of education (schwind et al., 2012), in order to better support our students to thrive, as they encounter their own life histories. using dewey’s three criteria of experience, we reflect on our stories and consider how our expanded understanding of our immigration experiences many years ago may inform our respective professional roles as educators today. we are cognizant that our creative writing may be examined from many different perspectives, and that numerous issues, challenges, and joys that immigrants encounter could be analyzed through various theoretical lenses. however, for the purposes of this writing, in alignment with narrative reflection informed by dewey’s philosophy and clandinin and connelly’s (1998; 2000) narrative inquiry self-study, we elect to focus on two narrative patterns, which, after reading and re-reading our stories, emerged as significant to our own experiences: transition, as we travel backwards and forwards in time and across physical places; and a sense of belonging, as we acclimatize and shift from surviving to thriving in our new landscape. transition issn 2563-9269 22 migration is a transition “from one country, region, or place of abode to settle in another” (webster’s, 1989, p. 908). in other words, it entails moving from one habitat to another, usually a distant one. transition is described as a process individual undertakes in their various life situations, over time, and across places. we see both migration and transition as dynamic and challenging. physically, this process may take a matter of hours, as is the case of taking an intercontinental flight. emotionally, this transition may span years, and be fluid and in flux, with its backwards and forwards movement of feelings, expressed as longings and tensions, oftentimes remaining unresolved. this is evident in both of our stories, where we write about our experiences of immigration, interweaving our respective mother tongues with the english language. migrants brave the new world, going beyond the visible horizons, searching for what lies beyond: often it is both, excitement and challenge. where the new horizon is not yet come into view, and the old one is vanishing in the distance, migrants often feel caught in the midst of transition, constantly wondering, where is ‘home’? with this, there is also an intermingling of feelings of loss and longing. helen longs for her friends in hong kong=, and jasna reflects that, “loved ones tired of waiting for our return, leave this world.” jasna’s story denotes the temporal progression of acclimatization. she starts her poetic prose fully in croatian, and as she progresses through the years of living in her new landscape, the two languages interweave, and the latter part of the poetic prose is written fully in english. helen’s story title, steppingstones, itself denotes this movement between continents, the movement between hong kong and canada. she too entwines the two languages, cantonese and english, to describe her inward feelings and outward actions. because transition and self-identity are closely related, those of us experiencing this adaptation to change are advised to reconnect with our pre-existing ways of being in the world that define who we are (boeijea et al., 2002; bridges, 2004; young et al., 2002). the transitional process encompasses “inner reorientation and self-redefinition” (bridges, 2004, p.12), which requires us to redefine our sense of self and to re-develop our self-agency (kwok, 2017). in other words, transition is not only a trajectory of ihtp, 1(1), 17-28, spring 2021 cc by-nc-nd 4.0 making changes in life, but also a psychological process for tapping into one’s current state of mind, feelings, and perspectives, while rediscovering and re-cultivating oneself (selder, 1989). we depict this progression of transition as a “step by step” process, moving across the “stepping-stones” from one shore to the other. this process of transition cannot be rushed. it must be lived moment by moment over time within evolving relationships. selder (1989) and bridges (2004) highlight that the essence of transition transpires when an individual’s existing reality is disrupted, which leads to a forced or chosen adjustment that contributes to the construction of a new reality. and, in order to achieve the hoped-for future, it is during the process of transition that we make alterations, positive or negative. it involves one’s ability to explore, confront, react to, reflect on, and rediscover the new possibilities and meaning for life (kralik et al., 2006; kwok, 2017). in other words, to survive, immigrants face a steep learning curve in terms of acquiring a new language, new culture, and simple social norms, all of which further reinforce their identity as outsiders. schwind uses the metaphor of a “transplanted outsider” whose roots, deeply connected to culture and family, are removed from their native soil and replanted into a strange new landscape (lindsay et al., 2016, p. 585). the transplanted individual struggles to survive and strives to adapt to the new environment. studies reveal that one of the most profound experiences for immigrants is the feeling of being an outsider, which often influences the way they view themselves in relation to others, as well as their attachment to the new society (amit, 2010; ono, 2002; verkuyten, 2008). researchers have observed that the development of these feelings relies highly on social support, perception, and acceptance of immigrants’ ethnic identity (amit & bar-lev, 2015; lay & veerkuyten, 1999; leung, 2001). jasna depicts the immigrants as the “fifthdimension people,” who are hoping to cope with the impact of being transplanted into the new environment. this extra dimension is the story of our experiences prior to migration. it is like having an additional toe; it makes us the same, yet a little different. this extra appendage has been with us from birth and comes along whatever path we walk. no issn 2563-9269 23 matter how long we are in the adoptive country, that “fifth-dimension” will always be part of who we are, our identity. what eventually makes the difference is whether we view this additional dimension as a burden or a gift. in a longitudinal study, arredondo (1984) found that a sense of belonging is reflective of the extent to which individuals feel positively about themselves and how much they trust others. he suggests that initially immigrants may feel out of place, but will progressively develop a feeling of belonging, provided they are surrounded by a welcoming and accepting community. we add, however, that an immigrant’s personal life philosophy also plays a significant role in how the transplanted individual adapts to the new landscape. sense of belonging besten (2010) defines belonging as “a feeling of attachment and the meaning that people attribute to a particular place” (p. 182). places are “spaces which people have made meaningful” (cresswell, 2004, p. 7). in this context, antonsich (2010) notes that to belong means situating ourselves in a space where we can feel personally and intimately connected, such as “home” (p.646). a home is fundamentally constructed to provide us with the feeling of security, protection, comfort, and to nourish our own values, culture, and self-identity without judgement. in other words, while immigrants are encouraged to establish recognition, membership, and participation in their new home, their need to develop a sense of connection and belonging is vital. for immigrants, the feeling of belonging is associated with the need for acceptance and to be treated as meaningful beings within the new community. research shows that immigrants’ strong social connection to their family and community can mitigate social loneliness (weiss, 1973). however, it is also argued that individuals can experience loneliness even when they are surrounded by a crowd, and conversely, be alone without feeling lonely (madhavi et al., 2014). in fact, it is the quality of social relationships that makes immigrants feel validated and accepted as social beings and members of a community. in this way, their humanness is respected. feeling alone in a new land characterizes many immigrant experiences. not having a sense of belonging is challenging for human beings, as it is foundational to the survival of our species. ihtp, 1(1), 17-28, spring 2021 cc by-nc-nd 4.0 psychologists agree that having a sense of belonging is one of the basic needs for human beings (baumeister & leary, 1995). in the case of immigrants, the process of settling in a new country involves more than accessing language training, education, housing, and employment (may, 2013; yuval-davis, 2006). a sense of belonging is entwined closely with voice, of being able to communicate clearly, to be heard, seen, and included. in jasna’s story upon arrival to the new land, without being able to speak english, she describes her voice as uttering “muted words.” in helen’s experience, her classmates assumed that she did not understand english because she did not immediately respond to their question, and excluded her from the group discussion. helen writes in her story that her “voice screams silently,” denoting a sense of constraint, and perhaps fear of ridicule, thus, leaving her feeling alone and excluded. yet, it is the development of a sense of belonging that contributes to immigrants’ integration and subjective well-being (amit 2010, 2012; capra & steindl-rast, 1991; massey & redstone, 2006; phinney et al., 2001). language skills are part of our voice. it is through language that we express our thoughts, ideas and emotions, giving voice to our identity. in this way language skills help us articulate our place in the world. as a social species, this notion is very significant, as we seek communities where we can find a sense of belonging, where we feel understood and accepted. as immigrants, we are expected to put our cultural roots and identities aside to acculturate to the new social context. we are expected to learn a new language, norms, and culture, and establish experiences and skills, to adjust to our new home. after immigration we are separated, not only from our country of origin, but also from our kin. consequently, immigrants often experience feeling unsettled. when we returned home for a visit, after a prolonged separation, we both experienced culture shock in our respective countries of origin. we struggled speaking our respective mother tongues. we felt lost and frustrated. for helen, when she is in toronto, she thinks of hong kong and its people. yet, when she is in hong kong, she thinks of her toronto home, but more as a physical place, than an emotional one. returning to her place of birth, helen recalls being embraced by issn 2563-9269 24 her parents, feeling like she was coming into a safe harbour. so, when her father did not understand her cantonese, it was jarring to her. she experienced once again a sense of displacement, worried that she let her parents down because she had changed. she did not want to disappoint them just because she had been transplanted to another landscape, fearing that the process may have damaged their bond. immigrants often return to their birth home, hoping to quench their thirst for belonging and inclusiveness. wishing against all odds that the loved ones left behind would be the same comfortable arms they were prior to their departure, and that they could simply pick up where they had left off. sadly, and realistically, this is not possible, especially the longer the time gap between departure and the returning visit. during the intervening time-space, both immigrants and their loved ones had changed. as helen’s story depicts, it is more than just the physical distance that needs to be bridged, it is the evolutionary chasm between the immigrants and those left behind that remains a challenge. hou and colleagues (2016) found that acculturation experience is highly associated with migrants’ sense of belonging to both new and birth countries. they highlight the importance of immigrants maintaining a strong attachment to their cultural heritage, while at the same time engaging with the receiving society. hou et al. believe that this balanced approach would strengthen immigrants’ meaningful contribution to the new country. as our respective roots grow into this new soil, we recognize that home is here now. it is something we both accept with a sense of resigned, yet appreciative acceptance. being here in canada for both of us, is being at home. despite this, we recognize that we are of two worlds. we continue to be in the fluid tension between there and here. the longer we are in our new place, the deeper our roots grow, and the more at home we feel. however, despite this acclimatization, from time to time, there is a feeling of being caught in limbo, or being torn. helen observes, “however, my immigration experiences remain. the feelings of loneliness, fear, isolation, and insecurity are continuously intruding into my relationships with friends and family.” jasna seems to bring some resolution to this tension by the end of her poetic ihtp, 1(1), 17-28, spring 2021 cc by-nc-nd 4.0 prose. she acknowledges that “we belong nowhere, and we belong everywhere.” reframing the tension into what we can be grateful for, allows a sense of expanded peace and contentment through resolution between loss and belonging. the emotional part of ourselves is hardwired and forms part of who we are, our identity, and where we belong, our place in the world. this process requires time, social attention, and commitment to creating a person-centered approach that aims to explore individual’s lived experiences of developing a sense of belonging, feeling “at home” in the new landscape (black, 2002; george & selimos, 2019). social attention refers to the creation of a supportive community, where we can try to find, and perhaps start to create, a sense of belonging. although the tension abates over the years, it is often not fully resolved. implication learning from reflection as dewey (1963) notes, “every experience should do something to prepare a person for later experiences of a deeper and more expansive quality” (p. 47), further underscoring that there is no learning without some reconstruction of our life events. by reflecting on our immigration experiences, the earlier internal uncertainty and insecurity became diminished. according to meleis et al (2000), such critical reflection enhances the mastery of new skills and ways of living, as well as the development of a flexible sense of identity in the midst of change. in both of our stories, we recognize that we left our respective birth countries for a better future. however, before such changes begin, meleis and colleagues (2000) advise it is imperative to make sense of what is disordering our lives and challenging our relationships, routines, roles, perceptions, ideas, or identity. to do so, acknowledging and reflecting on lived experiences, caused by disruptive events, allows individuals to examine how their current situations are interrupted and discover ways to respond to living and being in the world (lindsay et al., 2016). dewey observed that the “trouble with traditional education was not that it emphasized the external conditions that enter into the control of the experiences but that it paid so little attention to the issn 2563-9269 25 internal factors which also decide what kind of experience is had” (p. 42). chiu et al (2002) suggest that students with a higher sense of belonging may have fewer psychological issues and social problems, having greater possibility to show optimal cognitive and psychosocial functioning. therefore, educators ought to explore what belonging means to the people in their educational care and examine how they can create a welcoming environment where mutual respect, empathy, and inclusion are demonstrated. thus, educators play an important role in creating a supportive environment that fosters students’ sense of social and emotional belonging, and wellbeing. educators need to recognize the acculturation differences of immigrant students and the negative effects on their learning and adaptation in the classroom. it is important to pay close attention to the communication dynamics between the students and their families, and examine the changes in their roles, attitudes, and behaviours, which may negatively affect their relationships and the acculturation experiences. being educators, who are immigrants, we recognize that the fundamental element of emotional belonging is based on mutual respect and trust. our respective bodies of professional knowledge, practice, and identity as educators, have prepared us to be more sensitive and fully open to engaging with students from diverse backgrounds, by creating space for their storied biographies, their personal narrative, which are to be respectfully honoured. immigrant educators often indicate that they feel a strong connection with the students from any background, because they can easily articulate and share their concerns and desires for their learning. to ensure immigrant students are fully supported by the entire teaching team, not only immigrant educators, but the entire educational system should create a mentoring system for non-immigrant educators. connecting immigrant and non-immigrant educators, to learn from and about each other, is integral to fostering a supportive community of student learners. concluding thoughts by travelling through our personal (immigrant) and professional experiences temporally, from past to present, we discovered new concepts that reveal how ihtp, 1(1), 17-28, spring 2021 cc by-nc-nd 4.0 the internal and external conditions shape our future ways of engagement. examining our personal immigration experiences using connelly and clandinin’s (1990, 2006) narrative inquiry self-study framework, which is informed by dewey’s three criteria of experience (continuity, relationship and situations), we came to appreciate the shared humanity in migration experiences. in our collaborative reflection, we highlight the human need for belonging, community, voice, and identity. importantly, we recognize how our personal (inward) and social (outward) relationships and experiences inform who we are as persons and professionals, and how engaging in reflective dialogue, using creative self-expression, advances the quality of human life. engaging in reflective practice, aided by creative self-expression activities, we learn about ourselves and how our life events inform our present and future ways of being in the world, and especially for us as educators, in teaching-learning situations. by modeling engagement in reflective writing, we encourage our students to do the same. they are supported to puzzle through their own life events in order to better understand their current state of personal and professional being. through this reflective process, they consider their future choices, which became apparent through reflection and dialogue. the reflective activity also supports students’ engagement with the course curriculum, nurturing their curiosity for further learning. as narrative inquirers we understand education to be a process of inquiry, where both educators and students bring their narrative histories, which “shape their encounters with each other, with us, and with course materials” (schwind & lindsay, 2016, p. 482). in this way we acknowledge “the subjective, relational, contextual and constitutive nature of inquiry” (butler-kisber, 2010, p. 64). using our stories, we demonstrate how our personal accounts contribute to building a “continuous life of experience, linking the past to the future from the standpoint of the present” (bochner, 1997, p. 418). having engaged in narrative inquiry self-study of our lived experiences, we have gained a deeper insight into how such significant life events as migration may have an impact on students with similar histories, and how we, as educators, can more effectively support them to engage in their academic work and their social relationships. ihtp, 1(1), 17-28, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 26 our hope is that educators from around the world will find our collaborative narrative inquiry self-study helpful as they engage in their own reflective process to consider how they, migrant or not, can best support their students to not only survive, but to thrive in their educational landscape. references aksenchuk, s. (2020). personal illness experience of my adolescent self: a narrative inquiry self-study. unpublished masters thesis. ryerson university, toronto, on canada. amit, k. (2010). determinants of life satisfaction among immigrants from western countries and from the fsu in israel. social indicators research, 96(3), 515–534. amit, k. (2012). social integration and identity of immigrants from the fsu, western countries and ethiopia in israel. ethnic and racial studies, 35(7), 1287–1310. amit, k., & bar-lev, s. (2015). immigrants’ sense of belonging to the host country: the role of life satisfaction, language proficiency, and religious motives. social indicators research, 124(3), 947– 961. antonsich, m. (2010). searching for belonging: an analytical framework. geography compass, 4(6), 644–659. arredondo, p. m. (1984). identity themes for immigrant young adults. adolescence, 19(76), 977-93. baumeister, r. f., & leary, m. r. (1995). the need to belong: desire for interpersonal attachments as a fundamental human motivation. psychological bulletin, 117(3), 497– 529. besten, d. o. (2010). local belonging and ‘geographies of emotions’: immigrant children’s experience of their neighbourhoods in paris and berlin. childhood, 17(2), 181–195. https://doi.org/10.1177/0907568210365649 black, r. (2002). conceptions of “home” and the political geography of refugee repatriation: between assumption and contested reality in bosnia-herzegovina. applied geography, 22, 123– 138. bochner, a. p. (1997). it’s about time: narrative and the divided self. qualitative inquiry, 3(4), 418-438. boeijea, h., duijnsteeb, m., grypdonckb, m., & pool, a. (2002). encountering the downward phase: biographical work in people with multiple sclerosis living at home. social science and medicine, 55(6), 881–893. bridges, w. (2004). transitions: making sense of life’s changes. da capo press. bullough, r. v., & pinnegar, s. (2001). guidelines for quality in autobiographical forms of self-study research. education researcher, 30(3), 13-21. butler-kisber, l. (2010). qualitative inquiry: thematic, narrative and arts-informed perspectives. thousand oaks. capra, e., & steindl-rast, d. (1991). belonging to the universe: exploration on the frontiers of science and spirituality. harper collins. chiu, m. m., pong, s., mori, i., & chow, b. w. (2012). immigrant students’ emotional and cognitive engagement at school: a multilevel analysis of students in 41 countries. journal of youth and adolescence, 41(11), 1409-1425. doi:10.1007/s10964-012-9763-x clandinin, d. j., & connelly, f. m. (1998). personal experience methods. in n. k. denzin, & y. s. lincoln (eds.), collecting and interpreting qualitative materials (pp. 150-177). sage publications inc. clandinin, d. j., & connelly, f. m. (2000). narrative inquiry: experience and story in qualitative research. jossey-bass publishers. clandinin, d. j., & connelly, f. m. (2004). knowledge, narrative, and self-study. in j. loughran, m. l. hamilton, v. laboskey, & t. russell (eds.), international handbook of self-study of teaching and teacher education practices, (pp. 575-600). kluwer academic. connelly, f. m., & clandinin, d. j. (1988). teachers as curriculum planners. teachers college press. connelly, f. m., & clandinin, d. j. (1990). stories of experience and narrative inquiry. educational researcher, 19(5), 2-14. doi:10.3102/0013189x019005002 connelly, f. m., & clandinin, d. j. (2006). narrative inquiry. in j. l. green, g. camilli, & p. b. elmore (eds.), handbook of complementary methods in education research. (pp. 477-487). lawrence erlbaum associates, inc. cresswell, t. (2004) place: a short introduction. blackwell. dewey, j. (1916). democracy and education: an introduction to the philosophy of education. free press. dewey, j. (1929). the quest for certainty: a study of the relation of knowledge and action. minton, balch & co. https://doi.org/10.1177/0907568210365649 issn 2563-9269 27 dewey, j. (1963). experience and education. collier books, macmillan publishing company. (originally published 1938) dinkelman, t. (2003). self-study in teacher education: a means and ends tool for promoting reflective teaching. journal of teacher education, 54(1), 618. doi:10.1177/0022487102238654 distasi, c. (2020). the reciprocal relationship of self and practitioner: a narrative inquiry self-study. unpublished masters thesis. ryerson university, toronto, on canada. eisner, e. w. (2002). the arts and the creation of mind. yale university press. george, g., & selimos, e. d. (2019). searching for belonging and confronting exclusion: a personcentred approach to immigrant settlement experiences in canada. social identities, 25(2), 125–140. https://doi.org/10.1080/13504630.2017.138183 4 hou, f., schellenberg, g., & berry, j. (2016). patterns and determinants of immigrants’ sense of belonging to canada and their source country. statistics canada. http://www.statcan.gc.ca/pub/11f0019m/11f001 9m2016383-eng.htm hunt, d. e. (1987). beginning with ourselves: in practice, theory, and human affairs. brookline books, oise press. kralik, d., visentin, k., & van loon, a. (2006). transition: a literature review. journal of advanced nursing, 55(3), 320–329. https://doi.org/10.1111/j.13652648.2006.03899.x kwok, o. l. h. (2017). immigrant-early childhood educator’s experience of working with immigrant children and their families: arts-informed narrative inquiry self-study. unpublished masters research paper. ryerson university, toronto, on canada. lay, c., & verkuyten, m. (1999). ethnic identity and its relation to personal self-esteem: a comparison of canadian-born and foreign-born chinese adolescents. the journal of social psychology, 139(3), 288_99. leung, c. (2001). the socio-cultural and psychological adaptation of chinese migrant adolescents in australia and canada. international journal of psychology, 36(1), 8-19. lindsay, g. m. (2008). who you are as a person is who you are as a nurse. in j.k. schwind, & g.m. lindsay (eds.), from experience to relationships: ihtp, 1(1), 17-28, spring 2021 cc by-nc-nd 4.0 reconstructing ourselves in education and healthcare. information age publishing, inc. lindsay, g., schwind, j. k., papaconstintanou, e. smye, v., & cross, n. (2016). autobiographical reflection on what it means to experience disruption. reflective practice, 17(5), 583-591. doi: 10.1080/14623943.2016.1184635 madhavi, a. v. p., guruge, s., schwind, j., & schindel martin, l. (2014). exploring the experiences of loneliness among older sinhalese immigrant women in canada. perspectives, 37(1), 6-14. massey, d. s., & redstone, a. i. (2006). immigrant intentions and mobility in a global economy: the attitudes and behavior of recently arrived us immigrants. social science quarterly, 87(5), 954– 971. may, v. (2013). connecting self to society: belonging in a changing world. palgrave macmillan. meleis, a., sawyer, l., im e.-o., hilfinger messias, d., & schumacher, k. (2000). experiencing transitions: an emerging middle-range theory. advances in nursing science 23(1), 12–28. ono, h. (2002). assimilation, ethnic competition, and ethnic identities of u.s.-born persons of mexican origin. international migration review, 36(3), 726–745. phinney, j. s., horenczyk, g., liebkind, k., & vedder, p. (2001). ethnic identity, immigration, and wellbeing: an interactional perspective. journal of social issues, 57(3), 493–510. pinar, w. f. (1981). life history and educational experience. part two. journal of curriculum theorizing, 3(1), 259-286. polanyi, m. (2009). the tacit dimension. chicago: the university of chicago press. (original work published 1966). schwind, j. k. (2003). reflective process in the study of illness stories as experienced by three nurseteachers. reflective practice, 4(1), 19-32. schwind, j.k. (2008). accessing humanness: from experience to research, from classroomto praxis. in j. k. schwind & g. m. lindsay (eds.), from experience to relationships: reconstructing ourselves in education and healthcare (pp. 77–94). charlotte, nc: information age publishing inc. schwind, j. k. (2016). narrative reflective process: a creative experiential path to personal-knowing in teaching-learning scholarship. in j. gingras, p. robinson, j. waddell, l. & cooper (eds.), teaching as scholarship: preparing students for professional practice in community services. (pp. 137-154). wilfrid laurier university press. https://doi.org/10.1080/13504630.2017.1381834 https://doi.org/10.1080/13504630.2017.1381834 http://www.statcan.gc.ca/pub/11f0019m/11f0019m2016383-eng.htm http://www.statcan.gc.ca/pub/11f0019m/11f0019m2016383-eng.htm https://doi.org/10.1111/j.1365-2648.2006.03899.x https://doi.org/10.1111/j.1365-2648.2006.03899.x ihtp, 1(1), 17-28, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 28 schwind, j. k., & lindsay, g. (2016). arts-informed narrative inquiry: crossing boundaries of research and teaching-learning. learning landscapes, 9(2), p. 473-487. schwind, j. k., cameron, d., franks, j., graham, c., & robinson, t. (2012). engaging in narrative reflective process to fine tune self as instrumentof-care. reflective practice, 13(2), 223-235. doi: 10.1080/14623943.2011.626030. 1-13, ifirst article, 2011. selder, f. (1989). life transition theory: the resolution of uncertainty. nursing and health care 10(8), 437–451. shields, c., novak, n., marshall, b., & guiney yallop, j. j. (2011). providing visions of a different life: selfstudy narrative inquiry as an instrument for seeing ourselves in previously unimagined places. narrative works, 1(1), 63-77. verkuyten, m. (2008). life satisfaction among ethnic minorities: the role of discrimination and group identification. social indicators research,89(3),391404.https://doi.org/10.1007/s11205-008-9239-2 webster’s encyclopedic unabridged dictionary of the english language. (1989). portland house. weiss, r. s. (1973). loneliness: the experience of emotional and social isolation. mit press. young, b., dixon-woods, m., findlay, m., & heney, d. (2002). parenting in a crisis: conceptualising mothers of children with cancer. social science and medicine 55(10), 1835–1847. yuval-davis, n. (2006). belonging and the politics of belonging. patterns of prejudice, 40(3),197–214. doi:10.1080/00313220600769331 https://doi.org/10.1007/s11205-008-9239-2 issn 2563-9269 161 illuminating five possible dimensions of self-care during the covid-19 pandemic narelle lemon1 1department of education, school of arts, social sciences and humanities, swinburne university of technology, melbourne, australia corresponding author: n. lemon (nlemon@swin.edu.au) abstract background: self-care is about taking care of yourself. it is a proactive action involving steps to develop, protect, maintain and improve health, wellbeing or wellness. self-care can be seen as a repertoire of practices – different things you can do that help you care for you, no matter how small. it is an act of treating yourself like you would a close friend. the importance of valuing self-care has not changed in light of the covid-19 pandemic, in fact, more awareness and appreciation for what one can do to empower yourself may indeed be valued more. methods: in this paper, i draw on data from 53 participants aged over 18 years who responded to an online qualitative questionnaire between the months of may to june in 2020. poetry derived from all the participants has been generated to both represent their voice and to provide a provocation that ignites our hearts and mind to consider what is good in life. results: to further conceptualise self-care, i propose and present five possible dimensions of self-care (mindfulness, self-compassion, habits, time and agency). aspects within these dimensions are described juxtaposed with poetic representation that illuminates practices and mindsets engaged with during the covid-19 pandemic. conclusions: when thinking about self-care across five possible dimensions, the framework i propose becomes useful for capturing a holistic and authentic view of both proactive actions and how a variety of practices can be engaged with. empowerment is possible in partnership with self-compassion and awareness, where a self-kindness supports proactive decisions to be made on a daily basis that support wellbeing. central is that no matter one’s experiences with suffering during a pandemic, gratitude and awareness for oneself is possible. keywords empowerment, gratitude, poetic representation, self-care, self-compassion, background when we think about self-care, it is not uncommon for there to be reactions that reveal a rhetoric of “as if i have time”, “that is selfish”, or “i just don’t know where to start”. add a pandemic and pressures around what self-care is, what it can look like for one, and what it looks like in practice rise. but for some, covid-19 has provided an opportunity to be reflective and reconsider, rethink, reframe and redirect how one cares for oneself. the pandemic has created an opportunity for a pause and a selfawareness to emerge where empowerment is possible in partnership with self-compassion that ignites a humanity and self-kindness. it is possible to be present non-judgmentally although there is ihtp, 1(2), 161-175, 2021 cc by-nc-nd 4.0 suffering; acknowledging everyone is doing the best they can. in this paper, i draw on data that was collected from participants over 18 years of age, from across the world who live their lives embraced in various disciplines, jobs, life stages and contexts. in an online qualitative questionnaire, participants were asked to reflect upon both self-care and covid-19 from a flourishing perspective, or what is good in life. one of the aims was to significantly rebut and shift the louder rhetoric’s, and thus provide a provocation, of self-care was not, and is not, possible during a pandemic. issn 2563-9269 162 in this paper i draw on a conceptual model of selfcare that i have developed informed by positive psychology literature and research (see for example lemon, 2021; lemon & mcdonough, 2020) that refers to five possible dimensions of self-care (mindfulness, self-compassion, habits, time and agency) then locate what this looks like in practice based on participants self-identified enactment of self-care. i work with the data in a different way, sharing poetry generated from the participants data in response to the question: what are 3 good things that you have noticed in your protection, maintenance and proactive actions for self-care at this time? görlich (2016) argues that through poetic inquiry it is possible to create “evocative analyses that are able to broaden understandings, create dialogue and increase understanding of the polyvocality of experience” (p. 525). it is poetic representation that in this paper enables us to reflect upon what self-care can be, and what might be possible, especially in the time of a pandemic. the poetry is presented as a way to seek to broaden the conversation about self-care during covid-19 by considering the role that positive psychology may have, specifically the adoption of seeing what is good in life and considering how one may still flourish at a time when there are strong negative emotions and for some with experiences of psychological distress. in this way, poetic representation invites you as a reader to engage both emotionally and cognitively with the concepts (januchowski-hartley et al., 2018), and i invite you to enter a dialogue about what might be possible when we think about our self-care. our love hate relationship with self-care self-care is a proactive action that facilitates taking care of yourself. it involves steps to develop, protect, maintain and improve health, wellbeing or wellness. it is about meeting yourself each day, learning who you really are and continuing to be present with your needs to help you be the best version of yourself today. it's a process of self-discovery, not perfectionism or comparing yourself to others (lemon, 2021; lemon & mcdonough, 2021). self-care is, however, complex as the practice involves factors that support change or actions that require modification. limitations also need to be acknowledged here in the individual’s ability and capacity to take proactive action (gbhardt taylor & renpenning, 2011). additionally, although selfcare ihtp, 1(2), 161-175, 2021 cc by-nc-nd 4.0 locates the self in one’s wellbeing, thus placing the individual at the centre of proactive action (adkinsjackson et al., 2019), it is not an entirely individual act. self-care is both an individual and collective action with reliance on relationships with others (duggan et al., 2018; eller et al., 2018; gbhardt taylor & renpenning, 2011; narasimhan & kapila, 2019). family, dependants, community, workplaces, and/or culture plus systems such as healthcare available and their policies, processes and structures are pivotal to self-care. self-care ranges from a set of activities to a set of capacities (narasimhan & kapila, 2019). however, defining self-care is a contested area (godfrey et al., 2011; matarese et al., 2018). christina godfrey and colleagues in their analysis of practice, policy and industry perspectives in relation to self-care found 139 different definitions of self-care with little consensus on finding an agreeable definition in healthcare literature. however, we can identify that definitions usually align to two perspectives: 1) focus on improving the capacity of individuals to care for oneself, and 2) focus on how self-care relates to the health system (narasimhan et al., 2019). revealed in the research is that self-care is positioned within cultural and social norms, revealing tensions between access and responsibility, and the perceived value (duggan et al., 2018; eller et al., 2018). there is much debate on the place of self-care as a part of everyday. tensions exist in regard to self-care being an individual responsibility verses being something engaged in when there is a problem that requires professional healthcare services and thus a system responsibility. a significant gap is seeing self-care as an action that can empower one individually and collectively in the everyday. self-care for some individuals still feels selfish, and it is something they find hard – they don’t have time, find it difficult, compare individual practices to others, and find that they discard good wellbeing decisions even though they know it will be helpful when they are feeling under pressure or stressed (duggan et al., 2018; eller et al., 2018; godfrey et al., 2011; kissack, 2018). during the pandemic this has been prevalent (fiebig et al., 2020; horesh & brown, 2020; valizadeh-haghi et al., 2021; waters et al., 2021), with a significant focus on research that highlights the ways in which people are wounded and weakened. furthermore, much research, media and issn 2563-9269 163 popular culture has not been able to contribute beyond just considering the pandemic, ignoring or gleaning over how wellbeing and self-care can be bolstered (waters et al., 2021). even before covid-19 became a reality, there is evidence that there is a reliance on professional healthcare services to provide solutions (riegel et al., 2019). we can see this with the world health organisations (who) definition of self-care noting action is “the ability of individuals, families and communities to promote health, prevent disease, maintain health, and to cope with illness and disability with or without the support of a health-care provider” (world health organisation, 2013, p. 15). what we notice about this definition is that self-care is focused on the prevention of disease as the primary aim. in this interpretation of self-care, chronic illness and solutions for administration of medications for the management of mental and physical health ailments dominate (boyde et al., 2018; parulekar & mekoth, 2017; riegel et al., 2012, 2018; vanwesemael et al., 2018). self-care is more than this, it is about the everyday acts we undertake to be proactive. this uncovers the need to look at self-care education and a rethinking of interventions, and indeed the place of self-care, that empower individuals in their self-care practices while raising self-awareness and also building confidence and capacity (adkins-jackson et al., 2019; duggan et al., 2018; mcgarrigle & walsh, 2011). essential for the enactment of self-care is daily practice that individuals initiate and perform on their own behalf that support them in maintaining life and wellbeing (denyes et al., 2001; gbhardt taylor & renpenning, 2011). this requires balance between self-awareness and self-regulation (baker, 2004), with an agency and that supports addressing imbalance to sustain equilibrium (adkins-jackson et al., 2019). thus, it is suggested that the act of self-care is underpinned by awareness and reflection to support personal growth (cook-cottone & guyker, 2018). selfcare is, therefore, comprised of some actions within an individual’s control to manage wellbeing (narasimhan & kapila, 2019). while it is reported that self-care interventions increase choice (narasimhan & kapila, 2019), there is however, a gap in promoting self-care as a proactive action to thrive (narasimhan et al., 2019). this is noted in how challenges to self-care are reported. ihtp, 1(2), 161-175, 2021 cc by-nc-nd 4.0 observed is that choice and empowerment are missing especially in how self-care can be applied consistently and through the everyday in order to support wellbeing with challenges often positioned at blaming others or systems, or the act being difficult. the growing interest in the concept of self-care and that making time for self each day in order to process stressors and worries, and to focus on key life goals that align to meaning and purpose is required (magyar-moe, 2014). this is a significant area that this study addressed, specifically looking at self-identified self-care that individuals enact daily to assist them during a dynamic and changing time such as covid19. the importance of valuing self-care has not changed in light of the covid-19 pandemic, but the ways in which we engage with that value may need to have changed. specifically, this study aimed to understand how individuals self-identify that they flourish with their self-care during covid-19. the overarching research question was: what does selfcare look like during a time of dynamic change such as covid-19? this is informed by positive psychology, a relatively new field of psychology, that focuses research on positive variables that enhance wellbeing, including notions of flourishing (lomas et al., 2014). flourishing is a state where one can be their authentic self. to flourish is to find fulfillment in our lives, accomplishing meaningful and worthwhile tasks, and connecting with others at a deeper level— in essence, living the ‘good life’ (seligman, 2011). flourishing is a state where people experience positive emotions, positive psychological functioning and positive social functioning, most of the time, living within an optimal range of human functioning (lomas et al., 2014). method this paper draws on questionnaire data collected between the months of may to june in 2020. this was a time when lockdowns, restrictions and boarder closures were occurring globally. participants were recruited via a modified snowball method (parker et al., 2019) including professional social media accounts (instagram, twitter, facebook and blog). others who saw the invitation to participate in the online questionnaire were also encouraged to share to a wider audience who may be interested in participating. issn 2563-9269 164 while the data collection questionnaire was accessed 59 times, there were 53 participants. 88% of the participants identified as female (n=47), and 7.5% identified as male (n=4), with the remainder identifying as prefer not to say. 62% participants were between the ages of 3150 years (3140 =14; 41-50 = 19). 24% were aged between 51-60 years (n=13), 5.6% were aged 25 – 30 or 61 – 70 respectively (n=3 each), and 1.9 % were aged between 18-21 years (n=1). 62.22% (n=33) were from australia, with 7.5% (n=4) from uk, 5.66% respectively from the each of malaysia, canada and usa (n=3 from each country), 3.8% from new zealand and germany respectively (n=2 from each country), and 1 person from scotland, switzerland and ireland. participants identified themselves from a variety of vocations including being a student, teaching, nursing, being selfemployed, social work communications, health, and evaluation. the demographic data shared provides an overview of participants, but it not relevant to the analysis of data in regard to how it is used in this paper, rather presented as part of the trustworthiness criteria (unpacked further in this paper). data collection: questionnaire data was collected via a qualtrics questionnaire with 16 items. the questionnaire was developed by the author of this paper based on literature from the field of positive psychology and the notion that selfcare requires addressing diverse areas of wellbeing (seligman, 2011). considered but not limited to were wellbeing frameworks that could be used to scaffold this, for example permah (positive emotion, engagement, relationships, meaning, accomplishment, health) as one such framework (see for example mcquaid and kern's (2017) development of this framework with the addition of h from martin seligman's (2011) original perma framework) or five ways of being (connect, be active, take notice, give, keep learning) (marks et al., 2008). crucial in the design was the underpinning assumption that selfcare and wellbeing is developmental, and a variety of strategies or practices can allow individuals to build on their talents and what energizes them in order to support their wellbeing (louis & lopez, 2014). five questions were to elicit demographic information, while 11 content questions invited participants to share their experiences of how they have approached self-care during the pandemic from the perspective of ihtp, 1(2), 161-175, 2021 cc by-nc-nd 4.0 flourishing. questions prompted participants to consider how ideas of self-care had changed during covid-19 (awareness); how one would describe their attitude to self-care right now (engagement); how one treats themselves as a friend during this time (self-compassion); three good things one has noticed in themselves in their protection, maintenance and proactive actions for self-care (gratitude/positive emotions); new habits (meaning / accomplishment); the place of online to support movement (health), connections with others (relationships) and emotions (positive emotions); an expression of appreciation to self (appreciation / positive emotions); and a strategy that could inspire others during the pandemic (awareness / relationships / positive emotions). one question from the data produced is shared in this paper: what are 3 good things that you have noticed in your protection, maintenance and proactive actions for self-care at this time? gratitude is a fundamental element of human flourishing (henning et al., 2017). as a positive emotion, gratitude is an essential part of one’s orienting system that is of significant benefit during the time of a pandemic (waters et al., 2021). in a study of 511 adults who were surveyed online during march to may 2020, watkins et al (2021) reported that they were quite grateful, even in the midst of the pandemic. over 56% of respondents reported being very grateful, which was 17% greater than any other positive emotion (happy, hopeful, relieved, joyful). additionally, it was noted that three significant gratitude-related areas of perceived changes in the self were observed during this period: ‘are more grateful for the positive aspects of life’; ‘have a greater understanding each day that we are alive’; and ‘have a better sense of what is important to me.’ participants increased their gratefulness the more they observed it, reporting the more grateful they were, the more they reported these positive selfchanges. as gratitude can be cultivated through simple practices such as journaling or reflections such as noting 3 blessings (small acts we can often forget to appreciate in our day) or 3 gratitude’s (fishman, 2020; lyubomirsky, 2010; watkins, 2014), what is important in thinking about gratitude and appreciation during a pandemic is that we can express gratitude toward ourself and others in different ways (fishman, 2020) and these small acts have a positive impact on our wellbeing during a time of crisis and uncertainty. issn 2563-9269 165 ethics of care for participants during the dynamic times of covid-19, individuals and collectives have different experiences. important in designing this research was the work of jandrić (2020) who wrote in march 2020 that “academics have a unique opportunity, and a moral duty, to immediately start conducting in-depth studies of current events” (p. 234). this research aimed to highlight the positive experiences and gain insights into what this may be like for those who identify in this way. it is acknowledged though, that this perspective is one, and for some the idea of flourishing or feeling empowered is not one they are experiencing in this unprecedented time with trauma, anxiety, stress, and suffering present. ethically this was acknowledged during data collection, and as such, the invitation and questionnaire framed this at the beginning of the information sheet from a space of mutual respect and compassion. each of the 11 content questions were voluntary, so participants could elect to provide a response or not. numbers of questionnaire responses therefore varied across each question. the decision to make each of the questions ‘opt-in’ was associated with the desire to respect each participant’s right to choose which aspect of their experiences that they wished to comment on. this came from a space of awareness, mutual respect and compassion in not wanting to ask too much of participants during the pandemic and giving them flexibility, over which questions they could respond to was part of our response to this consideration. ethical care for participants was a part of the formal institutional ethics approval process from the university human research ethics committee (swinburne university of technology reference number 20202963-4352). thematic analysis manual coding of the qualitative data was undertaken by the researcher, and cross checked by a research assistant. the process began by inductively coding for key concepts or phrasing that aligned to five intersecting dimensions of proactive self-care: mindfulness, self-compassion, habits, agency, and time (figure 1). i followed a thematic approach; searching for patterns and relationships to “find explanations for ihtp, 1(2), 161-175, 2021 cc by-nc-nd 4.0 what is observed” (boeije 2010, p. 76) through segmenting and reassembling. trustworthiness of the qualitative inquiry comes from the revealing of the content analysis process. the depth of this process is outlined in the following section where the formation of the poems is outlined. furthermore, the criterion of credibility (the research design and participant demographics are described accurately, with awareness of researcher bias); dependability (stability of data over time and under different conditions noting how the data was collected and the context); conformability (the potential for comparisons between two or more independent people about the data’s accuracy, relevance, or meaning); transferability (the extent the reader can consider the findings can/may be transferred to other settings or groups); and authenticity (showing a range of realities) have been embraced throughout this research (lincoln & guba, 1985; elo et al., 2014; guba & lincoln, 1994; polit & beck, 2012). the findings are presented under each of these dimensions, represented in poetic format promoting a way for the reader to engage with the lived experiences of the participants in a way that ignites a mind, body and emotional response (richardson, 1997). poetic representation of the data working with data and presenting it through poetry can be a risk (lemon, 2021). however, working this way ignites a response from the reader – it creates a dialogue, broadens understanding, presents a different perspective, and invites one to reflect and be present with moments of celebrations, suffering, worries, and learning (görlich, 2016; lemon, 2021; lemon & mcdonough, 2021; mcdonough, 2018). like any form of qualitative data analysis, however, the process of constructing poetic representations involves “sifting through data” to identify words, phrases and extracts that “synthesize meaning” (prendergast, 2009, p. xxiii). immersion with the data and analysis according to identified dimensions of self-care was drawn upon (in this case informed by the framework of self-care being considered in this paper). all data was included with the exact phrasing as the participant had written in response to the questionnaire question. patterns were identified within a theme to find replications and or sub themes that helped shape the poem. the participant voices ihtp, 1(2), 161-175, 2021 cc by-nc-nd 4.0 issn 2563-9269 166 were moved around to form a poem with stanzas. every participant is represented in each poem. results and discussion self-care practices during a pandemic mindfulness. i'm finding relaxation exercises to be so much more appealing simple things can be very powerful more affectionate and attentive engagement with my pets having plans on my calendar to give structure to my days taking long and different walks around my urban neighbourhood i’ve noticed so many different things that i never knew were there taking long bike rides into and along the nearby linear parkland river woodland and fields i realise how much i enjoy being amongst nature take note of smaller things is good patience has increased ability to put thoughts and actions into perspective has increased empathetic responses to others have increased. slowing down mentally exercise more reading practising creativity journaling regularly keeps things from getting overwhelming keeps me in touch with my emotions i often learn things that i didn't realize i was feeling i value connection with others even more i've realised that social acts are more important to my self-care than i thought the strength of some of my relationships talking with other people going through the same experiences i’m getting to spend time with my teenagers in a better way my boyfriend and i communicate better now after spending so much time together been able to look after my family including elderly parents reaching out to friends for connection has also been huge having (virtual) events or plans to look forward to keeping me anchored and energized there are many different ways to connect with mindfulness, just as there are many different reasons for one to connect or not with mindfulness (roche, 2020). mindfulness in relation to self-care is about being present in this moment in time, and nonjudgmentally tuning into what is needed right now. the listening to one’s needs is crucial. what this poem reveals are that for the participants of this study mindfulness is an entire mode of knowing. it is about awareness for self and others. that even during a pandemic there are practices and strategies to support, maintain and protect self-care that enhance – connecting with relaxation techniques, enjoying nature, journaling or engaging in creative pursuits, savouring time with pets, connecting to relationships with own children, parents, friends, and partners. all these acts required intention (knowing where the attention is, and prioritising where the attention needs to be), attention (becoming fully aware of moment-to-moment internal experience), and the cultivation of an attitude (the approach via acceptance, kindness and curiosity) (shapiro et al., 2006). it is through cultivating mindfulness, that compassion, kindness, gratitude, awareness, openness and curiosity can be fostered alongside a quietening of the mind, improved focus, selfregulation and self-awareness (aviles & dent, 2015; shapiro et al., 2006; shapiro & carlson, 2017). issn 2563-9269 167 self-compassion. my compassion for myself and the world i think also the realisation that nothing bad will happen externally if i take care of myself i have recognised the need for self-care being less hard on myself asking myself questions keeps me accountable to me i am pausing more in the evenings and on the weekends i’m more patient with myself and others less self-critical and happier recognizing that i need to stop when my body and mind tell me to i sleep much better i am a better mum i listen to my heart much more i am happier i do not feel guilty for taking care of myself i am more productive in my workplace i let myself sleep i let myself cry i’m eating better gentle flow, if i feel like a walk, or bath or whatever... i just do it really engage appreciate whatever the self-care is... savouring every moment feeling very grateful for what is good self-compassion involves being kind and understanding toward oneself rather than being harshly self-critical, even in instances of uncertainty, unknown, pain, failure or worry (neff, 2003). selfcompassion is a journey. on this journey the unexpected can emerge for us, and this can be activating. we close our hearts in this moment. that is a coping mechanism. during covid-19 for many of ihtp, 1(2), 161-175, 2021 cc by-nc-nd 4.0 us we have been confronted with the need to comfort ourselves, to sooth our self. there has been a need to be present, enact a mindful awareness to allow for self-compassion to spring from the heart (neff & germer, 2018). kristen neff’s work in self-compassion places mindful awareness, kindness to self, and common humanity as three central pillars. these are crucial for self-care. this poem allows us to connect to the lived experiences of others and to engage with an awareness of what ones needs and embraces when they have the chance to treat oneself like a friend. mindfulness is vital in self-compassion as a means to anchor awareness in the present moment (neff & mcgehee, 2010). self-kindness has us being encouraging, supportive, unconditionally accepting. this is our soothing action to ourselves. and we are able to remind ourselves that everybody is complex, everybody is suffering and learning from their lived experiences. the common humanity pillar is a reminder that we all suffer, pain is a part of the shared human experience, and that every moment of suffering can be transformed into a moment of connection, with self and with others. time. flexibility blocked out time scheduled sessions doing more things, i enjoy rather than the things i ‘should’ be doing i have blocked out time in the morning so, i can start the day more slowly gives me a chance to get the kids ready for school then have breakfast while planning my day i have become better at blocking out time in my online work calendar so, i can focus on getting work done i scheduled 'afternoon tea' sessions with my team twice a week via zoom and we laugh together i continue my self-care of magazines and a bubble bath ihtp, 1(2), 161-175, 2021 cc by-nc-nd 4.0 issn 2563-9269 168 i'm exercising more than i ever have increased productivity in both work and the ‘to do' list around the house the biggest thing is that i can self-care in super short moments while an hour painting isn’t possible a quick “deep breath” or a slightly longer hot shower makes life survivable! self-care requires time. however, time is a variable that utilises micro-moments right through to lengthy practices or strategies. we can engage in daily activities, once a week, once a month, once a year for example. what is crucial is that a variety of strategies and practices are engaged with intentionally across a variety of time periods. there is value in a self-care strategy that empowers that may take a few minutes, such as a short breathing practice, just as much as a practice that takes slightly longer, such as a shower, and just as much as something that takes longer such as sleep. it is the proactive action that empowers and energises one that is key. self-care thus does require intentional awareness of time, and for some during covid-19 there has been a realisation of blocking this time out or dedicating parts of a day to undertake a specific self-care action is required, and beneficial. habits. setting limits and boundaries between work and home my ability to say no more often getting dressed i know that sounds silly but it makes me feel better i’ve proactively changed the time of daily outside walk to lunchtime when it’s warmer rather than early morning (that i used to do before driving to work) this has enabled maintenance of this practice i’ve purposely not increased wine intake at night (despite strong temptation) so, this protects me from creating a bad habit i was definitely more assertive about housework after old habits became bad habits the new order is helping sleep routine reading in the evenings before bed continuing to eat healthy i enjoy cooking more than i thought i view my family menu plans for health first and not convenience + health time for making healthy meals get outside when possible i won't let anything come between me and outside/exercise time if it gets delayed it gets rescheduled that day habits are about making small changes (duhigg, 2012; lea et al., 2015; riegel et al., 2019). these small changes accumulate over time to make a big difference. often, we can underestimate the small changes, the small tweaks we make to our thinking or behaviour thinking they don’t make a difference. but in fact, it is the small, tiny little tweaks we make, that add up and contribute to improvements in ourselves. taking responsibility for our wellness requires us to tune into our habits and cultivate an awareness around both what we need to do for our self in relation to self-care and what this can look like (the global happiness council, 2018). what this poem reveals are that during covid-19 core self-care strategies were enacted that returned us to the repositioning of health – sleep, healthy food decisions, exercise and sleep as featured habits that were essential. agency. protection for self-care being forthright about my reasons for doing ihtp, 1(2), 161-175, 2021 cc by-nc-nd 4.0 issn 2563-9269 169 something giving realistic reasons to explain why i am doing this i decided on a few channels to get my news from … and only look at those. this prevents eternal scrolling and reading that i am actively stopping myself from going through social media instead using that time to do something productive that i will enjoy more i have cut out some of the negative/overly political commentary on my social feeds you can't hide from it, but you don't have to consume it all the time maintenance for self-care doing activities that do hold value for me give me pride in completing i get dressed every day in professional clothing, including doing my hair, putting on some lipstick and concealer and accessories. this maintains my usual habits and helps me ‘change’ mindsets from bed to work to home time. i try to keep myself engaged in fun things i like, puzzles and books and phd proactive actions for self-care: for me personally these tend to be the first habits to go out the window during a stressful time and the hardest ones to build back in, so, having them all working smoothly is a huge goal when i get stressed! it can help me break cycles of anxiety or isolation much faster taking care of my physical health has also been incredibly important for my self care right now whether it's getting enough sleep hint: at least as much as usual or more drinking enough water eating things which are green, and moving/exercising most days have helped me feel better being able to go to shop and get the items i need to complete the activity i’ve kept up with my personal trainer via video call i work out with my limited equipment at home working out helps my immune system and helps me avoid back pain, so it’s also protective! trusting my gut feelings of anxiety as being a strength that protects me from harm and keeps me going feeling able to say no or bow out of unnecessary requests on my time the balance has returned in the new normal i like having the choice of when with whom and how engaged i am i've been able to worry less about what i 'should' be doing i’m more in control in every aspect of my life right now staying home means staying safe from a positive psychology lens, agency, empowerment and choice with self-care come from the opportunity to build wellbeing resources from what works and is good in life. it is about connecting with what energises you, enables you to utilise your strengths, and supports you to make decisions that promotes and recognises who you are (mcquaid & issn 2563-9269 170 kern, 2017; seligman, 2011; lemon, 2021). self-care requires an agency and empowerment of choice that broadens and builds resources for us (fredrickson, 2001; garland et al., 2015) it is more than just focusing on preventing disease, caring careers or what is wrong (eller et al., 2018). self-care is about paying attention to what you really need. it is about being present, assessing, observing and being curious about one’s needs with a compassion that is soothing and supportive. as we inquire with ourselves, we are able to put into place practices and habits to support our needs, that lead to maintaining, healthy boundaries. self-care is a path to empowerment. empowerment is proactive and allows for considerations of how one can be autonomous within systems of support. as we develop knowledge, we gain confidence (ludman et al., 2013). with confidence we are able to become more motivated and gain self-determination abilities. this might include being able to communicate our needs, seeking professional health more proactively, and being able to express concerns or preferences (chen et al., 2014). during covid-19 this poem reminds us that our agency is varied, it is beyond a pandemic as well, however it is the universal pause and interruption to how we have lived our lives that has provided for some an ability to reclaim our sense of who we are. asking questions of self and of others with a curiosity supports wellbeing (chen et al., 2016; kashdan et al., 2011), it empowers us. conclusion through poetry i invite you to engage with these provocations as a beginning point to position self-care as possible. while we can impact others by expressing gratitude directly, we can greatly enhance our own wellbeing by articulating gratitude in written or spoken form, even to ourselves, which allows us to focus in the moment on what we appreciate and brings us joy, happiness, or satisfaction. the expression of gratitude towards self in regard to the act of self-care during covid-19 by the participants of this study informed the poetry. revealed is that selfcare is varied but can be empowering, even during an uncertainty, the unknown, and significant changes. self-care requires attention for all of us. covid-19 has reminded us all of the place of and value in self-care. what is evident in these poems that represent lived experiences of what self-care can look like during a pandemic from the lens of participants gratitude and ihtp, 1(2), 161-175, 2021 cc by-nc-nd 4.0 appreciations, is that self-care is possible when under pressure and while experiencing dynamic changes and uncertainty. reconfirmed is that not one strategy works for everyone and that multiple intentional activities across variety of different wellbeing areas are essential, and indeed possible. although routines and rituals all changed for everyone, covid-19 bought to the forefront capacity for awareness, specifically tuning into needs for right now with a curiosity that supports novelty, challenge, and uncertainty. during a pandemic awareness for positioning self-care as worthy of our attention is illuminated. when thinking about self-care across five possible dimensions, this new framework proposed becomes useful for capturing a holistic and authentic view of both proactive actions and the variety of practices that can be engaged. empowerment is possible in partnership with self-compassion and awareness, where a selfkindness supports proactive decisions to be made on a daily basis that supports wellbeing and shifts viewing self-care from a deficit way of thinking and being that blames others, systems, or the act being difficult. central is that no matter one’s situation, difficulty and suffering during a pandemic, self-care is possible and gratitude and appreciation for oneself is achievable. acknowledgements this research was undertaken in narrm (melbourne) after a hard lockdown over june-november 2020 with this paper written during a short five day “circuit breaker lockdown” in february 2021. narrm occupies the unceded lands of the wurundjeri and boon wurrung peoples of the kulin nations. i give thanks and pay my respects to the traditional custodians, and elders past and present of these lands, waters and skies. we undertake to respect and uphold the responsibilities of being on country. references adkins-jackson, p. b., turner-musa, j., & chester, c. (2019). the path to better health for black women: predicting self-care and exploring its mediating effects on stress and health. the journal of health care organization, provision and financing, 56, 1–8. issn 2563-9269 171 https://doi.org/10.1177/004695801987096 8 aviles, p. r., & dent, e. b. (2015). the role of mindfulness in leading organizational transformation: a systematic review. the journal of applied management and entrepreneurship, 20(3), 31–55. https://doi.org/10.9774/gleaf.3709.2015.ju. 00005 baker, e. k. (2004). caring for ourselves: a therapist’s guide to personal and professional wellbeing. american psychological association. https://doi.org/10.1037/10482-001 boeije, h. (2010). analysis in qualitative research. sage publications ltd. boyde, m., peters, r., new, n., hwang, r., ha, t., & korczyk, d. (2018). self-care educational intervention to reduce hospitalisations in heart failure: a randomised controlled trial. european journal of cardiovascular nursing, 17(2), 178–185. https://doi.org/10.1177/147451511772774 0 chen, j., mortensen, k., & bloodworth, r. (2014). exploring contextual factors and patient activation. health education & behavior, 41(6), 614–624. https://doi.org/10.1177/109019811453178 1 chen, j., mullins, c. d., novak, p., & thomas, s. b. (2016). personalized strategies to activate and empower patients in health care and reduce health disparities. health education and behavior, 43(1), 25–34. https://doi.org/10.1177/109019811557941 5 cook-cottone, c., & guyker, w. m. (2018). the development and validation of the mindful self-care scale (mscs): an assessment of practices that support positive embodiment. mindfulness, 9(1), 161–175. https://doi.org/10.1007/s12671-017-0759-1 denyes, m. j., orem, d. e., & bekel, g. (2001). selfcare: a foundational science. nursing science quarterly, 14(1), 48–54. https://doi.org/10.1177/089431840101400 113 duggan, m., chislett, w.-k., & calder, r. (2018). the state of self care in australia. bmc complementary and alternative medicine, 6, 1–50. ihtp, 1(2), 161-175, 2021 cc by-nc-nd 4.0 https://doi.org/10.1016/j.eujim.2014.03.00 8 duhigg, c. (2012). the habits of individuals the habits of successful organizations the habits of societies. elo, s., kääriäinen, m., kanste, o., pölkki, t., utriainen, k., & kyngäs, h. (2014). qualitative content analysis: a focus on trustworthiness. sage open, 1-10. https://doi.org/10.1177/215824401452263 3 eller, l. s., lev, e. l., yuan, c., & watkins, a. v. (2018). describing self-care self-efficacy: definition, measurement, outcomes, and implications. international journal of nursing knowledge, 29(1), 38–48. https://doi.org/10.1111/20473095.12143 fiebig, j. h., gould, e. r., ming, s., & watson, r. a. (2020). an invitation to act on the value of self-care: being a whole person in all that you do. behavior analysis in practice, 13(3), 559–567. https://doi.org/10.1007/s40617020-00442-x fishman, m. d. c. (2020). the silver linings journal: gratitude during a pandemic. journal of radiology nursing, 39(3), 149–150. https://doi.org/10.1016/j.jradnu.2020.05.0 05 fredrickson, b. l. (2001). the role of positive emotions in positive psychology. the broaden-and-build theory of positive emotions. the american psychologist, 56(3), 218–226. http://www.ncbi.nlm.nih.gov/pubmed/113 15248 garland, e. l., farb, n. a., goldin, p., & fredrickson, b. l. (2015). mindfulness broadens awareness and builds eudaimonic meaning: a process model of mindful positive emotion regulation. psychological inquiry, 26(4), 293–314. https://doi.org/10.1080/1047840x.2015.10 64294 gbhardt taylor, s., & renpenning, k. (2011). self-care science, nursing theory, and evidence-based practice. new york, new york, usa: springer international publishing. https://doi.org/10.5860/choice.49-2104 godfrey, c. m., harrison, m. b., lysaght, r., lamb, m., graham, i. d., & oakley, p. (2011). care of self care by other care of other: the issn 2563-9269 172 meaning of self-care from research, practice, policy and industry perspectives. international journal of evidence-based healthcare, 9(1), 3–24. https://doi.org/10.1111/j.17441609.2010.00196.x görlich, a. (2016). poetic inquiry: understanding youth on the margins of education. international journal of qualitative studies in education, 29(4), 520–535. https://doi.org/10.1080/09518398.2015.10 63734 guba, e. g., & lincoln, y. s. (1994). competing paradigms in qualitative research. in n. k. denzin & y. s. lincoln (eds.), handbook of qualitative research (pp. 105–117). sage publications, inc. henning, m., fox, g. r., kaplan, j., damasio, h., & damasio, a. (2017). a potential role for muopioids in mediating the positive effects of gratitude. frontiers in psychology, 8(jun), 868. https://doi.org/10.3389/fpsyg.2017.00868 horesh, d., & brown, a. d. (2020). covid-19 response: traumatic stress in the age of covid-19: a call to close critical gaps and adapt to new realities. psychological trauma: theory, research, practice, and policy, 12(4), 331– 335. https://doi.org/10.1037/tra0000592 jandrić, p. (2020). postdigital research in the time of covid-19. postdigital science and education, 2(2), 233–238. https://doi.org/10.1007/s42438-020-001138 januchowski-hartley, s. r., sopinka, n., merkle, b. g., lux, c., zivian, a., goff, p., & oester, s. (2018). poetry as a creative practice to enhance engagement and learning in conservation science. bioscience, 68(11), 905–911. https://doi.org/10.1093/biosci/biy105 kashdan, t. b., afram, a., brown, k. w., birnbeck, m., & drvoshanov, m. (2011). curiosity enhances the role of mindfulness in reducing defensive responses to existential threat. personality and individual differences, 50(8), 1227–1232. https://doi.org/10.1016/j.paid.2011.02.015 kissack, m. (2018). the problem with self-care — that hummingbird life. the hummingbird life blog. ihtp, 1(2), 161-175, 2021 cc by-nc-nd 4.0 https://www.thathummingbirdlife.com/blo g/the-problem-with-self-care lea, j., cadman, l., & philo, c. (2015). changing the habits of a lifetime? mindfulness meditation and habitual geographies. cultural geographies, 22(1), 49–65. https://doi.org/10.1177/147447401453651 9 lemon, n. (2021). wellbeing in initial teacher education: using poetic representation to examine pre-service teachers understanding of their self-care needs. cultural studies of science education, 2021(2),1-20. https://doi.org/10.1007/s11422-021-10034y lemon, n., & mcdonough, s. (2021). if not now, then when? wellbeing and wholeheartedness in education. educational forum, 85(4), 1-20. lincoln, s. y., guba, e. g. (1985). naturalistic inquiry. sage. lomas, t., heffferon, k., & ivatzan, i. (2014). applied positive psychology: integrated positive practice. london: sage publications inc. louis, m. c., & lopez, s. j. (2014). strengths interventions: current progress and future directions. in a. parks & s. schueller (eds.), the wiley blackwell handbook of positive psychological interventions (pp. 66–89). wiley-blackwell. ludman, e. j., peterson, d., katon, w. j., lin, e. h. b., von korff, m., ciechanowski, p., young, b., & gensichen, j. (2013). improving confidence for self-care in patients with depression and chronic illnesses. behavioral medicine, 39(1), 1–6. https://doi.org/10.1080/08964289.2012.70 8682 lyubomirsky, s. (2010). the how of happiness: a practical guide to getting the life you want. london: piatkus. magyar-moe, j. l. (2014). applications of positive psychology to individual therapy. in the wiley blackwell handbook of positive psychological interventions (pp. 255–272). john wiley & sons, ltd. https://doi.org/10.1002/9781118315927.ch 14 marks, n. a., cordon, c., aked, j., & thompson, s. (2008). five ways to wellbeing. new economics foundation, 1–23. ihtp, 1(2), 161-175, 2021 cc by-nc-nd 4.0 issn 2563-9269 173 matarese, m., lommi, m., de marinis, m. g., & riegel, b. (2018). a systematic review and integration of concept analyses of self-care and related concepts. journal of nursing scholarship, 50(3), 296–305. https://doi.org/10.1111/jnu.12385 mcdonough, s. l. (2018). inside the mentors’ experience: using poetic representation to examine the tensions of mentoring preservice teachers. australian journal of teacher education, 43(10), 98–115. https://doi.org/10.14221/ajte.2017v43n10. 6 mcgarrigle, t., & walsh, c. a. (2011). mindfulness, self-care, and wellness in social work: effects of contemplative training. journal of religion & spirituality in social work: social thought, 30(3), 212–233. https://doi.org/10.1080/15426432.2011.58 7384 mcquaid, m., & kern, p. (2017). your wellbeing blueprint: feeling good and doing well at work. melbourne, australia: michelle mcquaid pty ltd. narasimhan, m., allotey, p., & hardon, a. (2019). selfcare interventions to advance health and wellbeing: a conceptual framework to inform normative guidance. bmj (online), 365, 1–4. https://doi.org/10.1136/bmj.l688 narasimhan, m., & kapila, m. (2019). implications of self-care for health service provision. in bulletin of the world health organization (vol. 97, issue 2, pp. 76–77). world health organization. https://doi.org/10.2471/blt.18.228890 neff, k. d. (2003). the development and validation of a scale to measure self-compassion. self and identity, 2(3), 223–250. https://doi.org/10.1080/15298860309027 neff, k. d., & mcgehee, p. (2010). self-compassion and psychological resilience among adolescents and young adults. self and identity, 9(3), 225–240. https://doi.org/10.1080/152988609029793 07 neff, k., & germer, c. (2018). the mindful selfcompassion workbook: a proven way to accept yourself, build inner strength, and thrive. guilford press. https://www.guilford.com/books/themindful-self-compassion-workbook/neffgermer/9781462526789 parker, c., scott, s., & gedded, a. (2019). snowball sampling. sage research methods foundations; sage publications ltd. https://doi.org/10.4135/978152642103683 1710 parulekar, m., & mekoth, n. (2017). insights into selfmedication. international journal of pharmaceutical sciences and business management., 5(2), 1–15. http://irgu.unigoa.ac.in/drs/handle/unigoa/ 4704 polit, d. f., & beck, c. t. (2012). nursing research: principles and methods. lippincott williams & wilkins. prendergast, m. (2009). “poem is what?” poetic inquiry in qualitative social science research. international review of qualitative research, 1(4), 541–568. https://doi.org/10.1525/irqr.2009.1.4.541 richardson, l. (1997). fields of play: constructing an academic life. new brunswick, new jersey: rutgers university press. riegel, b., barbaranelli, c., sethares, k. a., daus, m., moser, d. k., miller, j. l., haedtke, c. a., feinberg, j. l., lee, s., stromberg, a., & jaarsma, t. (2018). development and initial testing of the self-care of chronic illness inventory. journal of advanced nursing, 74(10), 2465–2476. https://doi.org/10.1111/jan.13775 riegel, b., dunbar, s. b., fitzsimons, d., freedland, k. e., lee, c. s., middleton, s., stromberg, a., vellone, e., webber, d. e., & jaarsma, t. (2019). self-care research: where are we now? where are we going? international journal of nursing studies. https://doi.org/10.1016/j.ijnurstu.2019.103 402 riegel, b., jaarsma, t., & strömberg, a. (2012). a middle-range theory of self-care of chronic illness. advances in nursing science, 35(3), 194–204. https://doi.org/10.1097/ans.0b013e31826 1b1ba roche, l. (2020). finding a doorway into bliss. https://www.irest.org/blog/nondualism/finding-doorway-bliss-lorin-rochediscovering-meditation-his-life-s-work-and ihtp, 1(2), 161-175, 2021 cc by-nc-nd 4.0 issn 2563-9269 174 seligman, m. e. p. (2011). flourish. melbourne: random house australia. shapiro, s. l., & carlson, l. e. (2017). the art and science of mindfulness: integrating mindfulness into psychology and the helping professions. in s. l. shapiro & l. e. carlson (eds.), the art and science of mindfulness: integrating mindfulness into psychology and the helping professions (pp. 115–126). american psychological association. shapiro, s. l., carlson, l. e., astin, j. a., & freedman, b. (2006). mechanisms of mindfulness. journal of clinical psychology, 62(3), 373– 386. https://doi.org/10.1002/jclp.20237 the global happiness council. (2018). global happiness policy synthesis 2018. 1–264. https://www.researchgate.net/publication/ 323152606 valizadeh-haghi, s., khazaal, y., & rahmatizadeh, s. (2021). health websites on covid-19: are they readable and credible enough to help public self-care? journal of the medical library association, 109(1), 75–83. https://doi.org/10.5195/jmla.2021.1020 vanwesemael, t., boussery, k., manias, e., petrovic, m., fraeyman, j., & dilles, t. (2018). selfmanagement of medication during hospitalisation: healthcare providers’ and patients’ perspectives. journal of clinical nursing, 27(3–4), 753–768. https://doi.org/10.1111/jocn.14084 waters, l., algoe, s. b., dutton, j., emmons, r., fredrickson, b. l., heaphy, e., moskowitz, j. t., neff, k., niemiec, r., pury, c., & steger, m. (2021). positive psychology in a pandemic: buffering, bolstering, and building mental health. the journal of positive psychology, 1–21. https://doi.org/10.1080/17439760.2021.18 71945 watkins, p. c. (2014). gratitude and the good life: toward a psychology of appreciation. in gratitude and the good life: toward a psychology of appreciation. springer netherlands. https://doi.org/10.1007/97894-007-7253-3 world health organisation. (2013). self-care for health: a handbook for community health workers & volunteers. in who. world health organization, regional office for south-east asia. ihtp, 1(2), 161-175, 2021 cc by-nc-nd 4.0 issn 2563-9269 175 figure 1: dimensions of self-care ihtp, 2(1), 1-14, 2022 cc by-nc-nd 4.0 issn 2563-9269 1 engaging patients in the hiv care continuum through referral-making behaviours and patterns: a descriptive cross-sectional study susan s. witte1, rogério m. pinto2, prema filippone1, c. jean choi3, melanie wall3 1school of social work, columbia university, new york, united states of america, 2school of social work, university of michigan, detroit, united states of america, 3department of psychiatry, columbia university, new york, united states of america corresponding author: r. m. pinto (ropinto@umich.edu) abstract introduction: hiv continuum of care consists of five steps needed to effectively treat and prevent the spread of hiv. linkage to and retention of patients to this continuum of care is a global priority. however, the covid-19 pandemic has impacted the quality of this continuum, as people living with hiv, have had to shelter reducing their access to services. as well, hiv agencies have had to close, reduce hours, and shift personnel. purpose and methods: the purpose of this descriptive cross-sectional study was to examine the person-centered referral-making behaviors and patterns used by providers to engage patients in the care continuum. three classes of linkage behaviors among 285 providers in 34 community agencies in new york city were identified using latent class analysis. results: these linkage behaviors include high (48%); moderate (34%); and low (18%). both high and moderate consisted of a blend of active and passive strategies and tracking systems. the high included more active strategies such as escorting patients to appointments. linkage class membership was significantly associated with frequency of linkages to primary care (p=.020). covid-19 disruptions demonstrate how the care continuum has been undermined by insufficient organizational resources. conclusion: findings suggest, addresses gaps in linkages should enhance the overall continuum of care provided to individuals diagnosed and living with hiv. keywords hiv care continuum; hiv testing; hiv primary care; pre-exposure prophylaxis, person-centered linkage to care funding source this work was supported by the united states national institute of mental health (“project ici”: r01mh095676) introduction the hiv continuum of care (“care continuum”) consists of five steps needed to effectively treat and prevent the spread of hiv: (1) hiv testing; (2) linkage to hiv primary care; (3) engagement and retention in hiv care; (4) treatment with antiretroviral therapy (art); leading to (5) hiv viral suppression (united states health resources & service administration., october 2016). the continuum includes patients who have been (1) diagnosed with hiv infection and linked to care (visited a care provider 30-90 days after hiv positive diagnosis); (2) engaged or retained in care (received medical care for hiv infection); and (3) virally suppressed (“viral load” is at a very low level) (centers for disease control and prevention, 2018). epidemiologically, the continuum represents a constant movement of patients – entering, reentering, and exiting care (gill & krentz, 2009) – and different patterns of retention among specific populations over time (rebeiro et al., 2013). in 2010 the national hiv/aids strategy (nhas) set a linkage to care (ltc) rate goal of 85% within 90 days of hiv testing (centers for disease control and prevention, 2015). success of the continuum to achieve ultimate 90-90-90 goals by 2030 (center for disease control and prevention, 2019), requires achieving viral suppression is thought to be ihtp, 2(1), 1-14, 2022 cc by-nc-nd 4.0 issn 2563-9269 2 influenced by the timing of engaging in hiv-related services, where “late enrollment” or delays in linking individuals to post-testing services, may lead to poorer outcomes over time (maccarthy et al., 2015). hence providers need to implement successful linkages – led by referral behaviors – to help patients access hiv testing, followed by referral to primary care services. the purpose of this descriptive cross-sectional study was to examine the person-centered referralmaking behaviors and patterns (active, passive, follow-up, and tracking) used by providers to engage patients in the care continuum. conceptual underpinning person-centered referral-making the movement of patients across continuum stages is influenced by a diverse workforce of providers of social and public health services – social workers, health educators, care navigators, and others – providing psychosocial services in primary care, outpatient, and prevention settings. in their day-today practices, these workers make referrals and then establish and track linkages to care and help to retain patients in each of the five steps described above – e.g., by providing snacks during visits, transportation, and others. “linkage to care continuum services” is a widespread practice best characterized as providers making referrals to services, offering psychoeducation information about pre-exposure prophylaxis (prep), and emotional and cognitive support to reduce delays in engagement and retention in care (cook, lutz, young, hall, & stacciarini, 2015; philbin et al., 2016; sullivan et al., 2015). the literature does not have an agreed upon empirical definition of “referral” or “linkage” nor do organizations and practitioners abide by a common definition. we used the term “referral making” – phoning, emailing, or walking the patient to meet another provider who can provide that service – as it is used in practice by social and public health service providers in their attempts at linking patients to services (e.g., hiv testing) (rahman, r., pinto, r. m., & troost, j., 2021). the term “referral-making” resonates and reflects our experiences as practitioners and the expertise of our interagency community collaborative board (iccb), described below, whose members make referrals in their day-to-day work (or who supervise those who do) (pinto, spector, rahman, & gastolomendo, 2015; pinto, spector, & valera, 2011). referrals include various behavioral patterns, including tracking and followup. the literature on person-centered care suggests that a person-centered referral focuses on the specific preferences, needs, and values of each individual patient (oates, weston, & jordan, 2000; park, 2020; plsek, 2001; queen, crone, & parker, 2015). emerging evidence suggests that person-centered care may facilitate access to prep, hiv testing, and primary care (campbell, lippman, moss, & lightfoot, 2018; fuster & gelberg, 2019; garland et al., 2011; labhardt et al., 2018; r. m. pinto, s. s. witte, p. filippone, c. j. choi, & m. wall, 2018a; seth, figueroa, wang, reid, & belcher, 2015). in active person-centered referral-making, providers would connect patients directly with another service provider (e.g., primary hiv care physician) and subsequently follow up with that provider and/or the patient. in passive referrals, arguably less personcentered, providers typically give all patients the responsibility of following up with referrals, for example, by offering information only, and then expecting the patient to make the call for an appointment. research suggests passive referralmaking behaviors and linkages to services are customary, despite research showing that more active and patient-centered behaviors in the part of the practitioner may be more likely to help patients engage and remain in care (garland et al., 2011). likewise, comprehensive case management (including psychoeducation) and direct outreach to care providers can improve engagement and retention (aziz & smith, 2011; bauman et al., 2013). referrals are meant to connect (in the shortest time possible) newly diagnosed individuals to hiv primary care. however, significant barriers exist that include individuals experiencing stigma, distrust of providers, and lack of information about linkages at the time of diagnosis are more likely to delay or forgo engagement (cook et al., 2015; philbin et al., 2016). once connected to care, patients may encounter additional barriers, such as inadequate health insurance, difficulty accessing medical providers, transportation to care settings, and immigration status (aziz & smith, 2011; bauman et al., 2013; dombrowski, simoni, katz, & golden, 2015; krakower, ware, mitty, maloney, & mayer, 2014; remien et al., 2015). referrals can be further delayed for individuals facing psychosocial issues, including depression, substance use disorders, and poverty (bhatia, hartman, kallen, graham, & giordano, 2011; del rio & mayer, 2013; moore, 2011; remien et al., 2015). given these many concerns, frontline workers are not always able to consistently offer substantive psychoeducation or make linkages to care and follow ihtp, 2(1), 1-14, 2022 cc by-nc-nd 4.0 issn 2563-9269 3 up adequately (pinto et al., 2015; pinto, spector, et al., 2018; remien et al., 2015). this gave rise to the concept of person-centered care, ensuring more attention to a patient’s unique circumstances, and emphasizing the need for flexibility in cognitive and skill-based responses in referral and linkage making, including a larger set of referral behaviors to respond more adequately to each patient. whether or not referrals achieve completion can make a difference on the impact of referral efforts (brodkin, 2011; lipsky, 2010) providers’ active referral-making (including coordination and tracking efforts) can facilitate service users’ timely access to needed services and reduce waste of organizational resources (e.g., staff hours, social capital, backlogs) (mehta et al., 2006). but despite the growing emphasis on person-centered care, few empirical studies have investigated the implications of personcentered orientation in organizations offering hiv services (beach & inui, 2006; plsek, 2001). without organizational supports for incorporating service users’ perspectives into care processes can easily become nominal and tokenized routines with little influence on service user outcomes (park et al., 2020). facilitators and barriers to care continuum linkages most individuals go through a crisis period following their hiv diagnosis. to help newly diagnosed persons to cope and to engage and stay in care, more active linkages, including increased interprofessional collaboration (e.g., between providers of social and public health services and primary care physicians) is recommended. but active referral making leading to linkages requires a specific set of behaviors not always undertaken by providers. for example, the literature shows that successful linkages, those leading patients to accessing and staying in care, are often performed by frontline workers who perceive team work positively (bauman et al., 2013; kim et al., 2014) and who work at agencies where they have had exposure to evidence based hiv prevention (r. m. pinto, s. s. witte, p. l. filippone, c. j. choi, & m. wall, 2018b). our team found that interprofessional collaboration (ipc) and recent referral training were associated with higher care continuum engagement – higher rates of hiv testing and hiv primary care linkages and more frequent prep psychoeducation (pinto, witte, filippone, et al., 2018a). a recent systematic review of best practices for increasing patient linkage to, retention and reengagement in hiv medical care found that only 3 out of 10 identified evidence informed best practices for engaging hiv positive individuals in care, focused on provider referral or linkage behaviors (higa, crepaz, & mullins, 2016). anti-retroviral treatment and access to services (artas), for example, is one widely implemented in the united states. to examine hiv provider behavior and inform improved approaches to more person-centered referral interventions, we empirically examined specific combinations of behaviors and patterns on referrals to the care continuum services. are there combinations of provider behaviors associated with a higher frequency of referral? methods data for the current study emerged from a longitudinal project titled: implementation collaboration for implementation (“project ici”: r01mh095676). project ici examined providers’ implementation of hiv services in primary care, outpatient treatment, and prevention programs in nyc. project ici was conceived and conducted in partnership with stakeholders and guided by an interagency collaborative community board (iccb), from establishing study aims to developing and piloting survey questions to collecting and analyzing data (pinto et al., 2015; pinto et al., 2011). project ici consisted of a cross-sectional design in which survey data was collected from 379 providers across 36 agencies in 2013-2014. twelve months later, 293 providers (77% retention rate) completed a similar survey with expanded questions, used in the current study, about provider services (e.g., prep psychoeducation). two pairs of agencies merged between baseline and 12-months follow-up resulting in 34 agencies. most loss-to-follow-up was due to high job loss. eight participants were excluded because they were no longer a service provider, resulting in n=285 providers with survey data reflecting 34 agencies for the current study. ici was approved by the appropriate institutional review boards. procedures sample selection and methods are described here in brief. for full details on all ici methods and procedures, please see pinto et al. (pinto, witte, wall, & filippone, 2018). sample size was determined by means of power analysis concerning the longitudinal study, explained above. agency recruitment ihtp, 2(1), 1-14, 2022 cc by-nc-nd 4.0 issn 2563-9269 4 all agencies were funded by the nyc department of health and/or the cdc to provide hiv-related services. we recruited from a list provided by the nyc department of health and the cdc of over 100 agencies. study staff contacted agency representatives by phone and outlined study procedures and staff inclusion criteria. nine agencies were in manhattan, eight in brooklyn, four in queens, three in the bronx, and nine had sites in two or more boroughs. agencies received a computer (valued at $1,000) as an incentive to participate. provider recruitment to be included, a provider was required to offer hiv services and/or make linkages to hiv services. there were no exclusion criteria. the average number of providers per agency was 10 (ranging from 2 to 25), representing from 100% (small agencies) to 10% (large agencies) of those providers eligible to participate. providers received $30 gift cards upon completion of the survey we used for this study. data collection project staff implemented computer-assisted faceto-face interviews. notebook computers that contained password-protected survey software powered by datstat illume 6.0 were used. all data were stored in computers to which only relevant personnel had access. provider interviews lasted 4560 minutes. meanwhile, agency leaders took a short organizational survey about their agencies (15-20 minutes). participants read and signed informed consent prior to interviews. measures engagement in the hiv continuum of care providers were encouraged to link patients to hiv testing to find out their hiv status. those who test positive were then linked to primary care. those who test negative, but who were likely to be exposed to hiv, were provided psychosocial education about prep. these variables were operationalized in collaboration with iccb providers, based on how providers typically talk about and record referrals, assuming that, in their day-to-day practice, providers use myriad strategies for linking patients. linkage to hiv testing and linkage to primary care. the following question was asked: how many patients did you link to primary care/hiv testing within the past 6 months? (more than 20 patients; 1620; 11-15; 5-10; fewer than five patients). pre-exposure prophylaxis. prep use was assessed by asking the following: “in the past 6 months, how often have you given information or educated patients about prep? (several times per week; about once per week; about once per month; less than once per month; have not educated in past six months).” these questions were followed by abbreviated definitions of prep from the cdc website. referral patterns participants were asked to “... share with us how you make referrals to patients.” a list of both passive and active types of linkage-making behaviors was provided to participants, who were asked to check all responses that applied. examples of active behaviors identified on the list included escorting patients to services; calling or emailing other providers while the patient was in the office; asking the patient to call or email provider. passive behaviors identified included providing contact card; calling or emailing the other provider after the patient left the provider’s office; offering patient information about the services and/or the provider (brochures/pamphlets/website). the type and extent to which providers followed up with and/or tracked referrals were also measured. for follow up, two questions were asked and included: “i follow up by contacting the provider to whom i made the referral” and “i follow up by asking the patient the outcome of the referral” (always, usually, sometimes, rarely, and never. to assess tracking, the following question was asked: “do you have a system to track the referrals you make to other agencies?” – yes/no. caseload the following question was asked, “please tell us, on average, how many patients you provide services to each week (individually or in groups)? responses included, <30, 31-50, and >50. demographics age was measured in years. ethnicity included latino/hispanic or nonlatino/hispanic. race included white, african american, “more than one race identified by the participant,” and a grouping of asian, native hawaiian, alaskan native, and american indian or native american. gender was ihtp, 2(1), 1-14, 2022 cc by-nc-nd 4.0 issn 2563-9269 5 categorized as male or female. education included high school, associate degree, bachelor’s degree(s), master’s degree(s), and phd(s). work positions included supervisor, counselor, case manager, navigator, educator/outreach, program administrator, and other. licensures/certifications licensure was measured by providing a list (alcohol/drug counselor, nurse, physician, psychologist, mental health counselor, social worker, other) where participants could check all that applied. this variable was dichotomized into participants who held at least one license compared to no licenses. data analysis latent class analysis (lca) was used to identify distinct referral patterns in service providers based on the nine items related to person-centered referralmaking, including follow-up behaviors and whether providers used a tracking system. this did not include provider's own personal tracking system. the best fitting number of classes was determined based on nylund et al. (nylund, asparouhov, & muthén, 2008). the highest posterior probability of belonging to each class was used to assign providers to a mostly likely class. proportions of each item conditional on the most likely class membership were calculated and plotted to facilitate interpretation and naming of the classes. comparisons between class membership and demographic characteristics and hiv continuum outcomes were performed using chi-square tests for categorical measures and analyses of variance for continuous measures. further pairwise comparisons were performed for significant associations. lca analyses were fit using mplus (version 7.4) and all other analyses were performed using sas (version 9.4). results agency and provider samples all agencies were non-profit organizations providing medical services (e.g., hiv testing and care) and/or social services (e.g., hiv counseling, workshops, homeless shelter). of the 34 agencies 20 (59%) had budgets below $10 million. eight (24%) employed more than 100 providers. table 1 summarizes the demographic characteristics of the final sample of providers used in the analyses. the average age was 43 (standard deviation (sd) = 12). most participants were female (63%), were black or african american (54%), and held a bachelor’s degree or higher (66%). providers identified their work roles as: case managers (19%), counselors (e.g., social workers, 17%), education/outreach (15%), supervisors (e.g., of counselors, case managers, etc.; 24%); program administrators (14%), health navigators (5%), and other (7%). more than half (57%) did not hold a professional license of any kind. fifty-eight percent of providers reported serving fewer than 30 patients each week. sixty-one percent of providers reported receiving formal training (curriculum-based training) in hiv prevention. referral patterns latent class models were fit for 2 to 4 classes based on the nine items related to referral-making, including follow-up behaviors and whether providers reported using a tracking system. the final best class model was determined to be three classes (bic = 4019.77, entropy = 0.730). fit indices worsened when the 4-class model was fit (nylund, asparouhov, & muthén, 2008). figure 1 shows the observed frequencies and proportions of the nine linkage items used to form the three referral pattern classes. providers in the first latent class (“high”, 48%) are high in both active and passive referral styles (e.g., calling the service provider while the patient is still in the office, offering the patient information and handing the patient a card with the referral information on it), as well as following up by asking the patient the outcome of the referral and using a tracking system. providers in the second latent class (“moderate”, 34%) are characterized with a moderate passive referral style; approximately 40 to 50% performed passive referrals and follow up procedures. over half of providers in both the high and moderate latent classes use tracking systems. the majority of providers in the third latent class (“low”, 18%) do not perform active or passive referral behaviors and do not follow-up with their patients. approximately half of the providers in the low group do not use a tracking system. forty-seven percent of these providers only offer information to patients, e.g., brochure, pamphlet, informational website. comparisons between the referral pattern classes and demographic characteristics and hiv continuum outcomes are also displayed in tables 1 and 2. in table 1, provider age (p=.004) and work position (p=.006) were significantly associated with the ihtp, 2(1), 1-14, 2022 cc by-nc-nd 4.0 issn 2563-9269 6 referral pattern classes. further pairwise comparisons show that providers in the moderate pattern class were significantly older than providers in the high (p=.01) and low (p=.002) pattern classes, with no significant difference (p=.26) between high and moderate pattern classes. compared to the low pattern class (2%), providers were significantly more likely to be case managers if they were in the moderate (26%; p<.001) or high (20%; p=.002) pattern classes. providers in the low pattern class were more likely to be: educators/outreach (24%; p=.032) compared to the moderate pattern class (10%); program administrators (24%; p=.029) compared to the high pattern class (11%); and identify as “other” (16%) when compared to either the moderate (5%; p=.031) or high pattern class (5%; p=.017). there was no significant difference between referral pattern class and identifying as a supervisor, counselor or navigator. in table 2, referral pattern class membership was significantly associated with referral frequency to primary care services (p=.02). thirty-seven percent of providers in the high pattern class linked more than 10 patients to primary care in the past six months compared to only 24% of providers in the moderate (p=.038) pattern class and 16% in the low (p=.006) pattern class. discussion we identified three distinct classes or groups of person-centered referral-making behaviors among a large cohort of social and public health service providers in new york city, an epicenter of the hiv epidemic (auerbach, c., & beckerman, n. l., 2010). we found that these providers use combinations of active and passive behaviors, essentially reflecting what they already know: “more is better,” but also that more active behaviors reflect a person-centered approach to referral making. in other words, more combinations of both active and passive behaviors yield more reported referrals and improved association with referrals to care continuum services. providers in the high referral pattern class were found to make more referrals to primary care, the most important first step to continuum engagement. this class of high referral makers reflects high levels of combined active and passive behaviors and reflect having access to tracking and follow up systems and behaviors. because we know that linkage to primary care is the critical first step to the continuum, we recommend that high group behaviors be incorporated into trainings for all providers and examined for their efficiency to ensure receipt of antiretroviral medications (arvs) for hiv positive individuals. figure 1 shows that low and high referral makers shared many of the same characteristics, suggesting a potential standardization of practice behaviors that might be modified by training providers in the science and the art of more person-centered referral-making. on the other hand, moderate referral makers appeared to be more selective in their efforts, indicated by the way they diverge from the other two—combining more passive behaviors with tracking and the highest follow up compared to the high or low referral makers. this may reflect the fact that more of those providers were case managers, and may already engage in a person-centered approach, as discussed further below. age and work position were characteristics significantly associated with low, moderate or high referral maker class membership. age may confer maturity, comfort engaging in referral-making, increased training opportunities, time in the field or practice wisdom, all of which would be expected to increase incorporation of a variety of referral-making behaviors. however, providers in the moderate class were the oldest. findings related to work position may simply reflect what we know about provider roles: case managers are those most closely associated with making linkages to care (gilman, hidalgo, thomas, au, & hargreaves, 2012) while administrators and educators spend a much smaller proportion of time, if any, engaged in active or passive referral making. further, it may reflect the state of the field of referral and linkage interventions, as follows. in one of three available intervention studies, gardner et al (gardner et al., 2005) found that individuals in a strengths-based case-management intervention were significantly more likely to have attended care compared to those receiving a standard referral approach. this suggests that case managers, who often work from a systematic checklist of anticipated referral behaviors, may be more successful at linking hiv positive individuals to primary care. despite lack of data on actual patient engagement in primary care, our findings are consistent with case management outcome studies reinforcing that a casemanagement approach may help patients identify their own internal strengths and assets, which in turn should empower them to find the services they need (brennan, browne, & horgan, 2014; gardner et al., 2005; higa et al., 2016). our team found that interprofessional collaboration (ipc) and recent linkage training among were associated with higher rates of linkages to hiv testing and hiv primary care and more ihtp, 2(1), 1-14, 2022 cc by-nc-nd 4.0 issn 2563-9269 7 frequent prep psychoeducation (pinto, witte, filippone, et al., 2018a). we also found that providers exposed to more evidence-based hiv prevention programs (e.g. debis) were more likely to refer patients to primary care, which may explain why noncase managers may also have moderate or high referral behaviors (pinto, witte, filippone, et al., 2018b). our findings are reflective of three of the four core intervention components identified and described by gilman et al (gilman et al., 2012): directly employed referral workers, active referral to medical care, person-centered referral case management and cultural and linguistic concordance. consistent with gilman, we recommend that agencies consider identifying workers and tasking them to specifically engage in person-centered referralmaking and emphasizing training in active referral behaviors and person-centered case management. we propose more training for case managers and other providers, with attention to role flexibility and clarification of service outcomes as they relate to linkage making. hiv services agencies should examine who on staff is best suited to be tasked with specific referralmaking outcomes (gilman et al., 2012). this study’s findings do not tell us about individual patient level factors that may influence retention in care; and there may be barriers to referral-making within each of the classes we identified. for instance, providers may be aware of a particular patient’s inability to pay for services, lack of transportation, or other concern related to interpersonal access or ability to follow through. some of these factors might influence choice of active or passive referral behaviors. future research should incorporate qualitative case studies that examine some of the individual behavior level barriers and how they influence successful engagement. findings raise questions about provider role flexibility and systems access. are some providers unable to access a tracking system, which might strengthen their ability to make linkages? tracking systems are more typically built into organizational structure and data collection mechanisms, often mandatory, whereas “follow up” may be differently defined from provider to provider, or agency to agency, and considered a softer expectation. finally, our work focuses here on only initial engagement, but re-engagement is becoming increasingly as compelling and necessary given the number of individuals who are not retained in the continuum after their first engagement (higa et al., 2016; maccarthy et al., 2015). interventions to improve linkage and retention in hiv care underscore the importance of strengths-based case management in conjunction with other evidenceinformed strategies such as peer navigation, experiencing higher level of engagement from medical providers, and clinics having closer contact with patients (higa et al., 2016; thompson et al., 2012). operational strategies that take into account provider and staff training to improve interactions with patients and reduce role confusion, integrative and collocated services particularly medical care, mental health services and substance use programs, agency-wide buy-in, and the employment of community-based staff all help to increase engagement into hiv care and make an more longterm positive impact on hiv care (krakower et al., 2014; ma, chambers, jenkins hall, tanner, & piper, 2017). these findings may be useful in testing future approaches for re-engagement in the continuum as well. limitations this study is limited by self-reported data and its cross-sectional design. future research should use longitudinal data to highlight the long-term impact of linkage training and interprofessional collaboration in provider engagement in the care continuum. we were unable to use longitudinal data because we did not collect prep-related questions until after the baseline had been completed. future research should include qualitative methods to examine specific cases of particularly successful linkage strategies to clarify how best to adapt and replicate for other settings. our data are limited in terms of how we measured frequency of linkages. the questions used to measure frequency of linkages assumes patient access to hiv testing and/or hiv primary care, but we do not have data to confirm that linkages occurred, which would offer quality assurance and allow for a better understanding of if/whether actions of high linkage making yielded better outcomes in terms of care. self-reported main outcomes, based on six-month recall, may influence accuracy. nonetheless, both recall and accuracy were helped by the fact that most providers (nearly 90%) track these linkages through tracking systems. implications to achieve the joint united nations programme on hiv/aids 90-90-90goals, 90% of all individuals with hiv will be aware of their status; 90% with hiv infection will receive antiretroviral therapy; and 90% will receive art and achieve viral suppression by 2030. to achieve these goals, the field must ensure success of the continuum and importantly, early, and immediate linkage to primary care among newly ihtp, 2(1), 1-14, 2022 cc by-nc-nd 4.0 issn 2563-9269 8 diagnosed individuals. this imperative is now exacerbated by the impact of the covid-19 pandemic, as people living with hiv have had to shelter in place and distance themselves from others while during many months in 2020 hiv services agencies have had to close, reduce hours, and task shift personnel to primary care in covid-19 hospital units (pinto & park, 2020). in terms of best practices, these covid-19 disruptions allow us to see how the hiv care continuum has been undermined routinely by insufficient concrete and human organizational resources, and by failures to follow up and track provider referrals to hiv services. study findings provide evidence of identifiable differences in approaches to referrals and linkage that may be improved upon to ensure and increase linkages once agencies “open back up.” strategies used by high and moderate linkage makers should be integrated into ongoing training across providers at hiv services agencies. agencies should increase training to improve these specific skills and provide supportive supervision to reinforce their use and to sustain their implementation. improved linkage to continuum services may ultimately ensure viral suppression and ability to achieve goals towards ending the epidemic. in terms of research, this moment points to the need to identify the gaps and limitations of past research (e.g., lack of large-scale qualitative evidence and limited involvement of clients and providers) so that researchers may address this problem of limited evidence on referral-making and linkage practices that could help clients access the hiv services to which they are referred (“referral completion”), and, ultimately, end the hiv pandemic within this decade. references auerbach, c., & beckerman, n. l. (2010). hiv/aids prevention in new york city: identifying socio cultural needs of the community. social work in health care, 49(2), 109–133. aziz, m., & smith, k. y. (2011). challenges and successes in linking hiv-infected women to care in the united states. clinical infectious diseases, 52(suppl_2), s231-s237. bauman, l. j., braunstein, s., calderon, y., chhabra, r., cutler, b., leider, j., . . . watnick, d. (2013). barriers and facilitators of linkage to hiv primary care in new york city. journal of acquired immune deficiency syndromes (1999), 64(0 1), s20. beach, m. c., & inui, t. (2006). relationship-centered care. journal of general internal medicine, 21(1), 3-8. bhatia, r., hartman, c., kallen, m. a., graham, j., & giordano, t. p. (2011). persons newly diagnosed with hiv infection are at high risk for depression and poor linkage to care: results from the steps study. aids and behavior, 15(6), 1161-1170. brennan, a., browne, j. p., & horgan, m. (2014). a systematic review of health service interventions to improve linkage with or retention in hiv care. aids care, 26(7), 804812. brodkin, e. z. (2011). policy work: street-level organizations under new managerialism. journal of public administration research and theory, 21(suppl_2), i253-i277. campbell, c. k., lippman, s. a., moss, n., & lightfoot, m. (2018). strategies to increase hiv testing among msm: a synthesis of the literature. aids and behavior, 22(8), 23872412. center for disease control and prevention. (2019). health equity. https://www-cdcgov.ezproxy.cul.columbia.edu/chronicdiseas e/healthequity/index.htm. centers for disease control and prevention. (2015). the national hiv/aids strategy. https://www.cdc.gov/hiv/policies/hip/stra tegy.html. centers for disease control and prevention. (2018). understanding the hiv care continuum.; 2018:4. https://www.cdc.gov/hiv/pdf/library/facts heets/cdc-hiv-care-continuum.pdf. cook, c. l., lutz, b. j., young, m.-e., hall, a., & stacciarini, j.-m. (2015). perspectives of linkage to care among people diagnosed with hiv. journal of the association of nurses in aids care, 26(2), 110-126. del rio, c., & mayer, k. (2013). editorial commentary: a tale of 2 realities: what are the challenges and solutions to improving engagement in hiv care? in: oxford university press. dombrowski, j. c., simoni, j. m., katz, d. a., & golden, m. r. (2015). barriers to hiv care and treatment among participants in a public health hiv care relinkage program. aids patient care and stds, 29(5), 279-287. fuster, d., & gelberg, l. (2019). community screening, identification, and referral to primary care, for hepatitis c, b, and hiv among homeless persons in los angeles. https://www-cdc-gov.ezproxy.cul.columbia.edu/chronicdisease/healthequity/index.htm https://www-cdc-gov.ezproxy.cul.columbia.edu/chronicdisease/healthequity/index.htm https://www-cdc-gov.ezproxy.cul.columbia.edu/chronicdisease/healthequity/index.htm https://www.cdc.gov/hiv/policies/hip/strategy.html https://www.cdc.gov/hiv/policies/hip/strategy.html https://www.cdc.gov/hiv/pdf/library/factsheets/cdc-hiv-care-continuum.pdf https://www.cdc.gov/hiv/pdf/library/factsheets/cdc-hiv-care-continuum.pdf ihtp, 2(1), 1-14, 2022 cc by-nc-nd 4.0 issn 2563-9269 9 journal of community health, 44(6), 10441054. gardner, l. i., metsch, l. r., anderson-mahoney, p., loughlin, a. m., del rio, c., strathdee, s., . . . holmberg, s. d. (2005). efficacy of a brief case management intervention to link recently diagnosed hiv-infected persons to care. aids, 19(4), 423-431. garland, p. m., valverde, e. e., fagan, j., beer, l., sanders, c., hillman, d., . . . bertolli, j. (2011). hiv counseling, testing and referral experiences of persons diagnosed with hiv who have never entered hiv medical care. aids education and prevention, 23(3_supplement), 117-127. gill, m., & krentz, h. (2009). unappreciated epidemiology: the churn effect in a regional hiv care programme. international journal of std & aids, 20(8), 540-544. gilman, b., hidalgo, j., thomas, c., au, m., & hargreaves, m. (2012). linkages to care for newly diagnosed individuals who test hiv positive in nonprimary care settings. aids patient care and stds, 26(3), 132-140. higa, d. h., crepaz, n., & mullins, m. m. (2016). identifying best practices for increasing linkage to, retention, and re-engagement in hiv medical care: findings from a systematic review, 1996–2014. aids and behavior, 20(5), 951-966. horn, t., sherwood, j., remien, r. h., nash, d., auerbach, j. d., group, t. a., & group, f. f. a. r. h. p. c. w. (2016). towards an integrated primary and secondary hiv prevention continuum for the united states: a cyclical process model. journal of the international aids society, 19(1), 21263. kim, j. j., maulsby, c., kinsky, s., riordan, m., charles, v., jain, k., & holtgrave, d. r. (2014). the development and implementation of the national evaluation strategy of access to care, a multi-site linkage to care initiative in the united states. aids education and prevention, 26(5), 429-444. krakower, d., ware, n., mitty, j. a., maloney, k., & mayer, k. h. (2014). hiv providers’ perceived barriers and facilitators to implementing pre-exposure prophylaxis in care settings: a qualitative study. aids and behavior, 18(9), 1712-1721. labhardt, n. d., ringera, i., lejone, t. i., klimkait, t., muhairwe, j., amstutz, a., & glass, t. r. (2018). effect of offering same-day art vs usual health facility referral during homebased hiv testing on linkage to care and viral suppression among adults with hiv in lesotho: the cascade randomized clinical trial. jama, 319(11), 1103-1112. lipsky, m. (2010). street-level bureaucracy: dilemmas of the individual in public service: russell sage foundation. ma, a., chambers, b. d., jenkins hall, w., tanner, a. e., & piper, c. n. (2017). individual and structural factors influencing hiv care linkage and engagement: perceived barriers and solutions among hiv-positive persons. journal of hiv/aids & social services, 16(1), 34-42. maccarthy, s., hoffmann, m., ferguson, l., nunn, a., irvin, r., bangsberg, d., . . . dourado, i. (2015). the hiv care cascade: models, measures and moving forward. journal of the international aids society, 18(1), 19395. mehta, s. h., lucas, g. m., mirel, l. b., torbenson, m., higgins, y., moore, r. d., . . . sulkowski, m. s. (2006). limited effectiveness of antiviral treatment for hepatitis c in an urban hiv clinic. aids, 20(18), 2361-2369. moore, r. d. (2011). epidemiology of hiv infection in the united states: implications for linkage to care. clinical infectious diseases, 52(suppl_2), s208-s213. nylund, k. l., asparouhov, t., & muthén, b. o. (2008). " deciding on the number of classes in latent class analysis and growth mixture modeling: a monte carlo simulation study": erratum. oates, j., weston, w. w., & jordan, j. (2000). the impact of patient-centered care on outcomes. fam pract, 49(9), 796-804. park, s. (2020). beyond patient-centred care: a conceptual framework of co-production mechanisms with vulnerable groups in health and social service settings. public management review, 22(3), 452-474. park, s., grogan, c. m., mosley, j. e., humphreys, k., pollack, h. a., & friedmann, p. d. (2020). correlates of patient-centered care practices at us substance use disorder clinics. psychiatric services, 71(1), 35-42. philbin, m. m., tanner, a. e., duval, a., ellen, j. m., xu, j., kapogiannis, b., . . . interventions, a. t. n. f. h. a. (2016). hiv testing, care referral and linkage to care intervals affect time to engagement in care for newly diagnosed hiv-infected adolescents in fifteen adolescent medicine clinics in the united states. journal of acquired immune deficiency syndromes (1999), 72(2), 222. pinto, r. m., & park, s. (2020). covid-19 pandemic disrupts hiv continuum of care and ihtp, 2(1), 1-14, 2022 cc by-nc-nd 4.0 issn 2563-9269 10 prevention: implications for research and practice concerning community-based organizations and frontline providers. aids and behavior, 1. pinto, r. m., spector, a. y., rahman, r., & gastolomendo, j. d. (2015). research advisory board members' contributions and expectations in the usa. health promotion international, 30(2), 328-338. pinto, r. m., spector, a. y., & valera, p. a. (2011). exploring group dynamics for integrating scientific and experiential knowledge in community advisory boards for hiv research. aids care, 23(8), 1006-1013. pinto, r. m., spector, a. y., witte, s. s., filippone, p., choi, c. j., & wall, m. (2018). training in evidence-based practices increases likelihood to integrate different hiv prevention services with substance-using clients. social work in public health, 33(3), 202-214. pinto, r. m., witte, s. s., filippone, p., choi, c. j., & wall, m. (2018a). interprofessional collaboration and on-the-job training improve access to hiv testing, hiv primary care, and pre-exposure prophylaxis (prep). aids education and prevention, 30(6), 474489. pinto, r. m., witte, s. s., filippone, p. l., choi, c. j., & wall, m. (2018b). policy interventions shaping hiv prevention: providers’ active role in the hiv continuum of care. health education & behavior, 45(5), 714-722. pinto, r. m., witte, s. s., wall, m. m., & filippone, p. l. (2018). recruiting and retaining service agencies and public health providers in longitudinal studies: implications for community-engaged implementation research. methodological innovations, 11(1), 2059799118770996. plsek, p. (2001). institute of medicine. crossing the quality chasm: a new health system for the 21st century. washington, dc national academies pr. queen, m., crone, d., & parker, a. (2015). long-term engagement with a practice-based exercise referral scheme: patients' perceptions of effectiveness. european journal for person centered healthcare, 3(3), 369-376. rahman, r., pinto, r. m., & troost, j. (2021). examining interprofessional collaboration across case managers, peer educators, and counselors in new york city. social work in public health, 448-459. rebeiro, p., althoff, k. n., buchacz, k., gill, m. j., horberg, m., krentz, h., . . . gebo, k. a. (2013). retention among north american hiv–infected persons in clinical care, 2000– 2008. journal of acquired immune deficiency syndromes (1999), 62(3), 356. remien, r. h., bauman, l. j., mantell, j., tsoi, b., lopez-rios, j., chhabra, r., . . . teitelman, n. (2015). barriers and facilitators to engagement of vulnerable populations in hiv primary care in new york city. journal of acquired immune deficiency syndromes (1999), 69(0 1), s16. seth, p., figueroa, a., wang, g., reid, l., & belcher, l. (2015). hiv testing, hiv positivity, and linkage and referral services in correctional facilities in the united states, 2009–2013. sexually transmitted diseases, 42(11), 643. sullivan, k. a., schultz, k., ramaiya, m., berger, m., parnell, h., & quinlivan, e. b. (2015). experiences of women of color with a nurse patient navigation program for linkage and engagement in hiv care. aids patient care and stds, 29(s1), s49-s54. thompson, m. a., mugavero, m. j., amico, k. r., cargill, v. a., chang, l. w., gross, r., . . . bartlett, j. g. (2012). guidelines for improving entry into and retention in care and antiretroviral adherence for persons with hiv: evidence-based recommendations from an international association of physicians in aids care panel. annals of internal medicine, 156(11), 817-833. united states health resources & service administration. (october 2016). about the ryan white hiv/aids program. https://hab.hrsa.gov/about-ryan-whitehivaids-program/hiv-care-continuum. https://hab.hrsa.gov/about-ryan-white-hivaids-program/hiv-care-continuum https://hab.hrsa.gov/about-ryan-white-hivaids-program/hiv-care-continuum ihtp, 2(1), 1-14, 2022 cc by-nc-nd 4.0 issn 2563-9269 11 table 1. sample demographic characteristics (n = 285) linkage pattern classes overall (n=285) high (n=137) moderate (n=97) low (n=51) diff between groups characteristic n % n % n % n % p-valuea age (mean, sd) 285 42.5 (11.8) 137 41.6 (11.8) 97 45.6 (11.5) 51 39.4 (11.4) 0.004 gender 0.112 male 105 36.8% 52 38.0% 29 29.9% 24 47.1% female 180 63.2% 85 62.0% 68 70.1% 27 52.9% ethnicity 0.449 not hispanic or latino 185 64.9% 87 63.5% 61 62.9% 37 72.5% hispanic or latino 100 35.1% 50 36.5% 36 37.1% 14 27.5% race 0.347 more than one race 44 15.4% 26 19.0% 12 12.4% 6 11.8% white 73 25.6% 32 23.4% 23 23.7% 18 35.3% black or african american 153 53.7% 72 52.6% 58 59.8% 23 45.1% native hawaiian, asian, american indian, alaskan nat. 15 5.3% 7 5.1% 4 4.1% 4 7.8% highest level of education 0.077 less than high school 3 1.1% 0 0.0% 3 3.1% 0 0.0% high school diploma/ged 66 23.2% 36 26.3% 16 16.5% 14 27.5% associate's degree 28 9.8% 14 10.2% 9 9.3% 5 9.8% bachelor's degree 90 31.6% 36 26.3% 41 42.3% 13 25.5% master's degree 96 33.7% 50 36.5% 28 28.9% 18 35.3% doctoral degree 2 0.7% 1 0.7% 0 0.0% 1 2.0% professional licensure 0.207 none 163 57.2% 79 57.7% 50 51.5% 34 66.7% at least one 122 42.8% 58 42.3% 47 48.5% 17 33.3% work position 0.006 supervisor 69 24.2% 36 26.3% 23 23.7% 10 19.6% counselor 48 16.8% 25 18.2% 16 16.5% 7 13.7% case manager 53 18.6% 27 19.7% 25 25.8% 1 2.0% navigator 14 4.9% 7 5.1% 6 6.2% 1 2.0% ihtp, 2(1), 1-14, 2022 cc by-nc-nd 4.0 issn 2563-9269 12 linkage pattern classes overall (n=285) high (n=137) moderate (n=97) low (n=51) diff between groups characteristic n % n % n % n % p-valuea educator/outreach 42 14.7% 20 14.6% 10 10.3% 12 23.5% program administrator 39 13.7% 15 10.9% 12 12.4% 12 23.5% other 20 7.0% 7 5.1% 5 5.2% 8 15.7% curriculum-based hiv knowledge 0.142 no 110 38.6% 46 33.6% 39 40.2% 25 49.0% yes 175 61.4% 91 66.4% 58 59.8% 26 51.0% caseload 0.833 fewer than 30 patients 165 57.9% 75 54.7% 59 60.8% 31 60.8% 31-50 patients 74 26.0% 37 27.0% 25 25.8% 12 23.5% more than 50 patients 46 16.1% 25 18.2% 13 13.4% 8 15.7% adifferences are assessed using analyses of variance for continuous measures and chi-square test for categorical measures ihtp, 2(1), 1-14, 2022 cc by-nc-nd 4.0 issn 2563-9269 13 table 2. descriptive statistics of hiv continuum of care (in the past 6 months) linkage pattern classes overall (n=285) high (n=137) moderate (n=97)* low (n=51) diff between groups characteristic n % n % n % n % p-valuea hiv testing 0.224 0-10 187 65.6% 84 61.3% 65 67.0% 38 74.5% 11+ 98 34.4% 53 38.7% 32 33.0% 13 25.5% primary care 0.020 none 55 19.3% 24 17.5% 17 17.5% 14 27.5% 1-4 82 28.8% 35 25.5% 27 27.8% 20 39.2% 5-10 67 23.5% 28 20.4% 30 30.9% 9 17.6% 11+ 81 28.4% 50 36.5% 23 23.7% 8 15.7% pep 0.084 have not educated 135 47.5% 54 39.4% 54 56.3% 27 52.9% once a month or less 70 24.6% 36 26.3% 21 21.9% 13 25.5% at least once a week 79 27.8% 47 34.3% 21 21.9% 11 21.6% prep 0.486 have not educated 146 51.4% 63 46.0% 53 55.2% 30 58.8% once a month or less 80 28.2% 44 32.1% 24 25.0% 12 23.5% at least once a week 58 20.4% 30 21.9% 19 19.8% 9 17.6% a differences are assessed using chi-square test for categorical measures * moderate (n=96) for the pep and prep outcomes due to missing data. ihtp, 2(1), 1-14, 2022 cc by-nc-nd 4.0 issn 2563-9269 14 figure 1. observed proportions of linkage items by pattern classes issn 2563-9269 176 mental health apps to address inequitable access to care in specific regions of the global north and south: a scoping review raneeshan rasendran1, farah ahmad1 1school of health policy and management, york university, toronto, ontario, canada corresponding author: f. ahmad (farahmad@yorku.ca) abstract introduction: there is a recent growth in the development of mental health applications (mhapps) to reduce stigma, improve knowledge and facilitate access to care especially for common mood disorders. yet, it remains unclear whether such interventions can address the access to care gap equitably in the global north and south. gaining such an understanding could yield valuable insights for mental health innovations at large and specifically amidst the heightened mental health risks of the covid-19 pandemic. methods: using arksey and o’malley’s method, a scoping review was conducted on academic and grey literature published between 2015 and 2019. india and china were selected as exemplars of the global south, and canada and the us for the global north. the literature was synthesized through thematic analysis, employing a social determinants of health lens. results: a total of 18 articles were selected for full-text review. results reveal that mhapps for depression and anxiety are efficacious in improving symptoms across the examined regions. mental health outcome scores improved in 13 studies. yet, a lack of public awareness in the global north, together with logistical barriers that include mental health stigma/discrimination, financial and social challenges, and cultural barriers to self-care in the global south, all inhibit the uptake of mhapps. conclusion: awareness of mhapps and logistical barriers must be addressed to make mhapps more accessible. policy makers should be cautious in implementing mhappss in disadvantaged communities given several challenges. a broader policy level emphasis is needed to address the logistical capabilities and cultural sensitivity of mhappss. the findings are also discussed in relation to the digital innovations for mental health in the pandemic. given the focus of the presented review on specific regions, the transferability of findings warrant caution. keywords access, ehealth, global mental health, mhealth, mobile health introduction the incidence of common mood disorders such as depression and anxiety are steadily increasing worldwide. for example, the world health organization estimates that over 264 million people are diagnosed or living with depression which continues to be a major cause of morbidity and mortality globally (world health organization, 2020). experts project that by 2030 depressive disorders will rank first in the developed countries and second in middleand low-income regions in relation to lost disability-adjusted-life-years (mathers & loncar, 2006). although evidence-based treatments and care ihtp, 1(2), 176-190, 2021 cc by-nc-nd 4.0 programs exist for conditions like major depression and generalized anxiety, the unmet care needs for common mood disorders are high. approximately, 75% to 85% of individuals living with mental health disorders in middleand low-income countries receive minimal treatment (wang et al, 2007). this number has further increased following the onset of the covid-19 pandemic (salari et al., 2020), causing policy makers, healthcare providers, and researchers in highand low-income countries (also known as the global north and south, respectively) to call for increased access to mental health care (dados & connell, 2012). ihtp, 1(2), 176-190, 2021 © ryerson university ojs / pkp issn 2563-9269 177 online mental health interventions delivered via digital devices or mental health apps (mhapps) can serve to reduce the gaps in access to mental health care. evidence from various developed countries demonstrates the effectiveness of such interventions. for example, andersson and cuijpers (2009) reported a mean effect size of 0.41 in their meta-analysis of 12 studies that used computer/internet-based interventions for depression. likewise, andrews et al. (2010) reported mean effect sizes of 0.78 for depression, 1.12 for generalized anxiety, 0.92 for social phobia and 0.83 for panic disorder in their review of 22 such studies. despite the evidence on effectiveness, access by the community requires ongoing efforts due to the digital divide (poushter, 2016). nonetheless, proponents of mhapps argue for their potential in the global south as well (fairburn & patel, 2017). scholars present several reasons to consider mhapps in the global south as a viable option in closing the mental health access gap. firstly, there is a steady increase in the use of internet and the emergence of affordable smartphones in the region (poushter et al., 2018, p. 4). in 2013, for example, a median of 45% across 21 emerging and developing countries reported using the internet at least occasionally or owning a smartphone, and the figure rose to 54% just two years later (poushter, 2016). further, mhapps could reduce the challenges posed by the low number of mental health professionals for face-to-face therapy in many of the countries in the global south. for example, in a large country like india, the number of psychiatrists, nurses, psychologists and social workers for every 100,000 residents is estimated as 0.3, 0.12, 0.07 and 0.07 (who india, 2019). mhapps could also be used by people remotely, with or without therapist, reducing travel time and cost (donker, 2009; christensen, 2010), allowing access to people residing in remote areas or with transportation challenges. moreover, the burden of human suffering and economic impact is huge in the global south because 80% of all people diagnosed with a mental health disorder reside there (rathod et al., 2017). this prevalence of compromised mental health in the global south is linked to population density. for example, 1.37 billion people reside in india and represent 17.8% of the world population (worldometers, 2019). it is also linked to structural socioeconomic inequities, which have been associated by some scholars to the growing global hold of neoliberalism that supports reduction in government’s social spending including healthcare while encouraging privatization and deregulation (lund et al., 2010, p. 16). thus, addressing mental health in innovative and equitable ways is important to reduce people’s suffering and to contribute in the economic prosperity of nations. whether mhapps facilitate use, uptake, and adherence to mental health care in the global south and global north is an important area to examine. the digital divide in the north still exists (poushter, 2016) while mhapps is an emergent area for the global south. for example, in 2015 arjadi et al. conducted a systematic review of quantitative studies in the low and middle-income countries and only three randomized controlled trials were found on the effectiveness – the specific mental health conditions addressed by the mhapps and access to care remained unexamined. with the aim to enhance scholarly understanding, our team conducted a scoping review using arksey and o’malley’s (2005) framework for literature review. for specificity of the review and ensuing recommendations, canada and the united states were chosen to represent the global north, while china (including hong kong and taiwan) and india were selected to represent the global south. the selection of these countries was informed by their gross domestic product (the world bank, 2019). india and china were selected as emerging economies while they also represent 36.17% of the worlds’ population. new insights for these regions in the global south could mean informing mental health programs for millions of people. canada and the usa were selected based on their economic similarity and the rapid development of mhapps in both. research questions the specific research questions for both global south and north were: 1) are mhapps effective/efficacious? 2) what is the impact of mhapps on access (use, uptake, adherence) to mental health services? 3) what are the facilitators and barriers to using mhapps? issn 2563-9269 178 the findings can be used to inform policy, practice, and research in global mental health care by identifying areas of success and gaps for future initiatives. this area is particularly relevant given the growing mental health impact of the covid-19 pandemic. the social distancing policies in place to curtail the spread of the virus have led to a loss of routines, feelings of frustration, loneliness, hopelessness, and symptoms of anxiety and depression (salari et al., 2020). methods the framework proposed by arksey and o’malley (2005) was used due to the broad nature of the research questions being asked. the scoping approach allows inclusion of both qualitative and quantitative research and multiple sources of information. reviewing a broad body of published literature is necessary to make recommendations for a wider audience. the five steps employed for the scoping study, were: (1) developing a research question, (2) searching literature by using inclusion and exclusion criteria, (3) selecting articles, (4) charting of data extracted from included articles, and (5) collating, summarizing, and reporting the findings. to better conceptualize access to mental health care, the review was guided by foci of use, uptake and adherence to mhapps. the use of mhapps was assessed by reviewing study participant demographic and whether results included diverse populations. the uptake of mhapps was examined by reviewing duration of use by participants. the adherence of mhapps was assessed by reviewing participants who used the intervention for the full duration of study. the search of literature in the reported study followed a systematic and rigorous approach (figure 1). the electronic databases of medline, psycinfo, sociological abstracts and social science abstracts were searched for the years between 2015 and june 15th, 2019. drawing from arjadi et al.’s 2015 systematic review of online interventions for mental health, the keywords included ‘online,’ ‘web,’ ‘internet,’ ‘internet-based,’ ‘app,’ ‘apps,’ ‘application*,’ ‘tablet*,’ ‘ipad,’ ‘depression,’ and ‘anxiety.’ nonetheless, our review is distinct from that of arjadi et al.’s in that we included countries from both the global north and south, and both quantitative and qualitative studies. the country ihtp, 1(2), 176-190, 2021 cc by-nc-nd 4.0 names included in the searches were canada, us, india, china, hong kong and taiwan. the journal of medical internet research was independently evaluated for relevant articles. additionally, grey literature was searched via google and google scholar using the previously identified key terms. the first six pages were reviewed as there was a low yield of relevant articles thereafter. through this process, 2,157 abstracts were identified. in the next step of abstract review and selection of articles, inclusion and exclusion criteria were applied. articles were selected if they (1) were published between 2015 and june 15th 2019, (2) were in the english language, (3) were available in full-text, (4) included adult population (18 years of age or over), (5) included primary (or embedded) populations residing in india, china/hong kong/taiwan, canada, or the united states, (6) focused on an online intervention utilizing a digital device with downloadable software to deliver mental health care either (therapist-assisted or non-assisted) by phone or computer/tablet, and (7) aimed to understand how online interventions can reduce, treat, or manage symptoms of depression and/or anxiety. the exclusion criteria were pharmacological studies, incomplete studies, protocols, systematic reviews, literature reviews, thesis or discussion papers. also, studies that used online mental health interventions as screening tools were excluded. other forms of interventions, such verbal interventions delivered over cellular phone calls or video calls, were excluded. to keep the review process broad, we applied the criteria manually. based on these selection criteria, 18 articles formed the sample for the full review and synthesis. the review of selected articles entailed data extraction and synthesis of findings. the data was extracted and charted in excel sheets according to author names, year of publication, study location and setting, study population and size, intervention type, study design, duration of study, objectives, outcome measures, and relevant findings (see appendix 1). in order to synthesize the findings, an inductive thematic analysis was undertaken. the results reported in each of the included study were read and re-read carefully to answer specific questions examined in this review. the relevant texts were extracted and coded for patterns and compared across studies using the constant comparison issn 2563-9269 179 technique to identify themes and sub-themes and draw links wherever possible. the social determinants of health perspective was employed to enrich synthesis and interpretation (world health organization, 2010). results out of 18 selected studies, 10 were identified as being a part of the global north (five canadian and five us based) and there were eight studies identified as being a part of the global south (six in china and two in india). the most frequent study design was randomized controlled trial (7 studies) followed by cross-sectional survey (3 studies), non-randomized trials (2 studies), and other designs. table 1 presents more descriptive details. the results are thematically summarized to answer the specific questions examined in the review. we present here each theme with dominant and unique findings pertinent to the global south and north. 1. effectiveness/efficaciousness of mhapps effectiveness in improving depressive and/or anxiety symptoms was a key focus for seven studies in the global north (arean, 2016; hadjistavropoulos et al., 2016a; hadjistavropoulos et al., 2016b; howells et al., 2016; jones et al., 2016; mohr et al., 2017; pugh et al., 2016). all seven studies showed to have significantly improved depressive and/or anxiety symptoms amongst the study participants in some capacity. participants who used a mhapp throughout the duration of these studies showed substantial reductions in primary outcome scores including, the patient health questionnaire-9 (phq-9) scores, generalized anxiety disorder-7 (gad-7) scores, the edinburgh postnatal depression scale scores, and the center for epidemiologic studies depression (cesd) scale scores. further research is needed with larger sample sizes as the results were not sub-analyzed by socioeconomic position or ethnicity (arean et al., 2016; hadjistavropoulos et al., 2016a; hadjistavropoulos et al., 2016b; howells et al., 2016; mohr et al., 2017; pugh et al., 2016). five of the ten studies in the global south, discussed the effectiveness of mhapps in improving depressive and/or anxiety symptoms (auyeung and mo, 2018; hung et al., 2016; kishimoto et al., 2016; mak et al., 2015; mak et al., 2017). all five of the studies were conducted in china and most of the ihtp, 1(2), 176-190, 2021 cc by-nc-nd 4.0 studies showed significant improvement in depressive and/or anxiety symptoms. two of the studies were with clinically diagnosed patients (auyeung and mo, 2018; hung et al., 2016) and the other studies involved community samples (kishimoto et al., 2016; mak et al., 2015; mak et al., 2017). in the first group of studies, the depression and anxiety scores improved post-intervention for participants on the cesd-short version scale, phq-9 and the visual analogue scale for anxiety. for example, auyeung and mo’s (2018) 6-day online positive-psychological intervention (ppi) indicated that ppi improved flourishing (p < 0.01) and reduced clinically diagnosed depressive symptoms (p < 0.05) compared to the control. all of these studies were moderate in size. in the second group of the studies, two studies revealed that the depression and anxiety scores improved post-intervention for participants on the social interaction anxiety scale and the 18-item mental health inventory (kishimoto et al., 2016; mak et al., 2017). however, one study showed there was no significant time x group interaction found on the short version of the depression anxiety stress scale (mak et al., 2015). 2. impact of mhapps access: use, uptake and adherence eight of the reviewed studies in the global north reported findings relevant to the use, uptake, and adherence to online mhapps (abel et al., 2018; pugh et al., 2016; wang et al., 2016; arean et al., 2016; hadjistavropoulos et al., 2016a; hadjistavropoulos et al., 2016b; mohr et al., 2017; pugh et al., 2016). two studies from the us reported variations in the use of mhapps by gender, age, race, income, education level and area of residence. the us-based study by abel et al. (2018) involving veterans who had a mental health diagnosis (e.g., depression and anxiety) reports several statistically significant variations in the use across sub-groups. for instance, they found that low-income patients who could receive free care were significantly less likely to use online mhapps known as my healthevet and/or clinical video telehealth than those who did not (abel et al., 2018). they also found that latinand african americans were less likely than white-americans to use either of these tools, while women were more likely to use both than men (abel et al., 2018). in terms of veterans in rural areas, they were less likely issn 2563-9269 180 to adopt my healthevet compared with urban veterans but much more likely to engage with clinical video telehealth or both tools (abel et al., 2018). the study by hadjistavropoulos et al. (2016a) reported that younger participants with minimal education, who were uncomfortable with written communication, were taking psychotropic medication, and were under psychiatric care, had fewer program starts or lower symptom improvement in one of the two online mental health programs. four of the us and canada based studies reported on the adherence as a function of the delivery mode of mhapps (arean et al., 2016; hadjistavropoulos et al., 2016b; mohr et al., 2017; pugh et al., 2016). the findings of these studies suggest that online therapy works best in the presence of or through the guidance of a therapist. for example, the pugh et al. study (2016) had a high degree of program adherence to their ta-icbt program (60% completed their program); this was most apparent when there were therapists guiding the program, such as through weekly telephone calls. interestingly, one study observed no differences in completion rates whether therapists were registered providers, graduate students, or were trained in psychology or another discipline (hadjistavropoulos et al., 2016b, p. 27). arean et al. tested self-guided mobile apps without any therapist and with minimal staff contact for outcome assessments for depression. the results showed high dropout rates with nearly half of the enrolled participants not even downloading their assigned apps (2016, p. 9). five of the studies in the global south presented findings related to use, including dropout or adherence. three studies (two in hong kong and one in mainland china) highlighted the promising efficacy of mhapps as a less costly and highly scalable approach for mental health compared to face-to-face therapy (hung et al., 2016; mak et al., 2015; mak et al., 2017). further, much like the global north, mhapps examined in hong kong and mainland china showed that standalone apps may not be enough to instill regular active use among users. mak et al.’s 2017 study had high attrition rates throughout study duration (10.12% completed the 3-month follow-up) and hung et al.’s 2016 study showed a trend of decreased frequency of use in an 8-week period – both of these studies used mapps without a ihtp, 1(2), 176-190, 2021 cc by-nc-nd 4.0 therapist. however, kishimoto et al.’s 2016 study showed the effects of a self-guided icbt intervention were not different from the effects of a guided icbt intervention in social anxiety. hung et al.’s 2016 study of chinese outpatients who had clinical depressive disorder found only limited smartphone use among participants (<500 mb per month). however, higher use of the online intervention called ihope because it had offline capabilities (hung et al., 2016, p. 134). 3. facilitators for mhapps in terms of the facilitators for mhapps’ implementation or use, the review of studies led to identification of two sub-themes: the engagement of users, preferences, and personalization; and the quality of content. engagement of users, preferences and personalization in five of the reviewed studies from the us and canada, strategies for engagement of users, incorporation of their preferences, and personalization of mhapps were shown to facilitate the use of such interventions (hadjistavropoulos et al., 2016a; howells et al., 2016; lipschitz et al., 2019; mohr et al., 2017; wang et al., 2016). user engagement for mhapps were greatest when applications were context-sensitive to the needs of the users by allowing for personalization of application choices. for instance, intellicare, for instance, had the highest app usage than other apps in its study with an average of 195 app launches per participant over the 8-week study, possibly attributable to the broad range of personalizing features which participants can choose from (mohr et al., 2017). in addition, lipschitz et al.’s 2019 study highlights participant interest in using apps that facilitate core functions of cognitive behavioral therapy such as cognitive restructuring and behavioral activation (70% of participants with smart devices) and interest in features that would promote wellness in areas of behavioural health such as sleep difficulties and inactivity (73% of all participants). likewise, in the global south, four studies highlighted the importance of user engagement, preferences, and personalization for mhapps though the preferred features were not the same as in the global north (auyeung and mo, 2018; mak et al., issn 2563-9269 181 2015; patel et al., 2017). across three studies, more participants seemed to have improved positive wellbeing when interactive elements (supplementary messages or flourishing impact) or chinese-relevant themes (pressure for academic excellence, filial piety, and balancing school and social life) were incorporated (auyeung and mo, 2018, p. 12; mak et al., 2015). tewari et al.’s 2017 study in india also reveals the need to be contextually specific and use multiple ways to engage participants in online interventions. interviews with community members indicated that the knowledge received through the intervention empowered them to approach accredited social health activists (ashas – lay health workers) and share their mental health symptoms (tewari et al., 2017, p. 5). quality of content a study based in the us by howells et al. reported the content of the online mobile intervention matters. the benefits increase when content is evidence-based and includes empirically-based strategies such as expressing gratitude, performing acts of kindness, visualizing one’s best possible self, using character strengths and practicing mindfulness (howells et al. 2016, p. 175). benefits also increased when user enjoyment was taken into consideration (howells et al. 2016, p. 175). likewise, a 2017 study in the global south by patel al. showed that a panel of three physicians agreed that retaining cbt and behavioral activation (ba) modules were essential for mhapp use in china, whereas the panel was split on the use of interpersonal psychotherapy (p. 5), revealing their challenges regarding cultural relevance. 4. barriers for mhapps the review of included studies led to identification of barriers to the implementation or use of mhapps; these were unique for the global north and south. in a us based study, the level of awareness about mhapps was identified as a barrier among veterans (lipschitz et al., 2019). the authors found that veterans in boston reported their most frequent concerns related to using an app for mental illness included: a lack in proof of efficacy (71.8%), data privacy (59.1%), and in general not knowing where to find such an app that would help with their mental illness (51.0%) (p. 4). participants’ ratings of interest ihtp, 1(2), 176-190, 2021 cc by-nc-nd 4.0 in using an app recommended by a clinician were significantly greater than general-interest ratings and even greater when the recommending clinician was a specialty mental health provider (lipschitz et al., 2019). the same study found that access to devices and use of apps, in general, was high nearly 80% reported owning smart devices, and of those with smart devices, nearly 90% reported that they use apps in general. interest in using mobile apps for mental illness was high at 70% of the sample; however, it was somewhat less than using mobile apps in general. in the global south, a few studies reported logistical or implementational barriers. practical barriers were identified by nahar et al. (2017) by examining how realistic it is to use mhealth intervention for diabetes and depression in rural india; the depression-related findings are explored here. the findings suggest that individuals suffering from depression are among the least likely to turn to their mobile phones in the first place (nahar et al., 2017, p. 10). they also noted that habitual and easy take-up of mhealth applications by patients themselves was inhibited due to 1g or 2g basic phone products along with seasonally erratic electricitysupply or short battery life (nahar et al., 2017). other barriers discussed by tewari et al (2017, p. 6-7, 11) were stigma and discrimination related to receiving treatment, financial livelihood, social constraints, and gaps in using technology–based applications/ivr messages. another barrier was related to the selfhelp focus in mhapps which is antithetical to the collectivist cultural values in the global south. in the nahar et al.’s study, respondents expressed a desire that mhapps’ could be used to support the family as a whole (nahar et al., 2017). discussion our review advances scholarly understanding about the access to online mental health interventions with a focus on depression and/or anxiety. this is a timely effort given the global mental health impact of covid-19. in 2018, the who emphasized the potential of digital technologies to advance the sustainable development goals and improve the accessibility, quality, and affordability of health services in all countries (world health organization, 2018a). we selected literature from the us and canada to represent the global north, and china, issn 2563-9269 182 india, hong kong and taiwan for the global south. the findings of the review reveal convergence and divergence of the themes identified for the global south and north and are discussed below with implications for policy, practice, and research. a key cross-cutting theme of examined regions was the effectiveness and facilitative role of mhapps in accessing mental health care. in this context, a notable phenomenon is the better working of online therapy in the presence of or through the guidance of a therapist. however, more research would help to unpack the underlying mechanisms. nevertheless, policymakers in the global north could consider the provision of therapist-assisted mhapps as a universal care program given they have more mental health professionals available. in contrast, the policymakers in the global south would need investments in training mental health professionals along with the mhapps. there are innovative models on the rise in the global south for the former, such as training of community-based workers to provide mental health support (kohrt et al., 2018). the inclusion of diverse communities in the design and testing of mhapps is an area that needs attention in both global north and south. our review of the studies from the global north demonstrated unequal access by socioeconomic position, ethnicity, gender, age and geographic location while such sub-analysis was not available for all studies. at the same time, reviewed studies revealed that engagement of users and inclusion of their preferences and personalization lead to better use, adherence, and impact of mhapps in both global north and south. these findings emphasize the need to conduct future research with larger and diverse samples to understand and address the digital divide. further, these findings speak to a need to integrate mhapps humanistically for promoting mental wellbeing and alleviating symptoms of common mood disorders like depression and anxiety. a humanistically driven approach would focus on creating systems for people, unlike a technically driven approach that would fit people into systems. in fact, previous research has shown that patients who are likely to somatise their mental illness symptoms have no problem reporting psychological symptoms when asked directly (ahmad et al., 2018). this kind of direct asking and information sharing could be operationalized via digital tools given their ease of use and ability to ihtp, 1(2), 176-190, 2021 cc by-nc-nd 4.0 operate in multiple languages. in fact, a 2016 study showed promising results for a digital diabetes prevention program used by underserved, lowincome hispanic prediabetic patients (fontil et al., 2016). there was high engagement and satisfaction with the digital diabetes prevention program despite lower digital literacy skills (fontil et al., 2016). research such as this highlights the potential of mhapps for common disorders in diverse regions, when adapted correctly. yet, a bottom-up community engaged approach is vital to combat the private industry’s push in promoting mhapps that are not contextualized to local realities. it is worth noting that the persistence of stigma in both the global north and south makes it clear that mental health must become a priority on all global public health agendas. in fact, according to the who’s world health report, mental health, in general, has not been a part of many countries’ agendas globally, and governments must begin taking action (world health organization, 2018b). currently, more than 40% of countries have no mental health policy and over 30% have no mental health services/programs (world health organization, 2018b). around 25% of countries have no mental health legislation (world health organization, 2018b). international bodies like the who and professional associations for mental health and primary care could bring several countries together and develop a national mandate requiring a bottom-up approach from private industries developing mhapps. such a policy shift would allow for the development of culturally appropriate mhapps and faster uptake through knowledge translation. the results of this review also identify regionspecific themes. for example, there is a focus in the global north on raising awareness amongst users about mhapps, whereas studies in the global south focus on user attrition or dropout when delivering mhapps, along with structural barriers impeding accessibility to mhapps, and the contentious nature of “self-help”. regional differences likely involve broader forces such as the growing global hold of neoliberal policies that emphasize limiting government spending and incentivising private industry including for health/social care needs. scholars also suggest the differential impact of neoliberalism on the global south and north. mills and fernando contend that political systems issn 2563-9269 183 determine the way mental health services are organised because political theories affect the way problems of the mind are conceptualised (mills & fernando, 2014, p. 193). in the global south, a shift to individualize the responsibility of one’s mental health may be a result of the neoliberal forces such as the push of mhapps by private industry which, in effect, reconfigure distress resulting from poor economic conditions to a symptom of mental illness or blame the victim (mills & fernando, 2014). the introduction of mhapps may be premature in settings where economic conditions are suboptimal and structural barriers are vast because the conditions of daily living must be addressed first or simultaneously. furthermore, issues concerning mental health cannot be considered independently from other areas of development, such as education, employment, emergency responses and human rights capacity building (world health organization, 2019). some of the regional differences noted in the review may also be explained by the differences in the notions of life priorities and mental health and wellbeing prevalent in the global north and global south. we identified several studies in the global south where participants wished for their mhapps to be (re)framed to meet their cultural preferences. for instance, patel et al.’s 2017 study highlighted that students within mainland china wanted their mhapps to have chinese-relevant themes. the responses from these students included more themes pertaining to academic excellence, filial piety, and balancing school and social life (patel et al., 2017). these insights suggest that a simple adaptation of mhapps to local context may not suffice, and that attention to cultural values and beliefs is crucial. narayan gopalkrishnan’s 2018 study claims there are many key considerations that should be incorporated when working with diverse cultures in mental health care including emotional expression, shame, power distance between patient and provider, collectivism, spirituality, and religion. furthermore, understanding the nature of treatment-seeking amongst a cultural group, including experiences of racism and discrimination, is necessary. thus, there are severe repercussions on individuals and communities if systems and processes are not in place to enable mental health providers to work effectively across cultures (gopalkrishnan, 2018). mhapps could best achieve this by building research capacity in the global ihtp, 1(2), 176-190, 2021 cc by-nc-nd 4.0 south and north for such innovations in a communityengaged manner. the findings also offer insights for developing a digital health response to the impact of covid-19 on peoples’ mental health. for example, countries in the global north could prioritize public awareness for the mhapps which are evidence-based, while countries in the global south could invest more in supporting the digital infrastructure and addressing structural barriers. further, government bodies and civic organizations ought to be vigilant about the push from private industry to deploy mhapps rapidly. such quick upscaling poses risks of neglecting diverse local contexts and cultures, which are at the core of the innovations’ acceptance, uptake, usability, and sustainability. the interpretation of the review findings should involve caution due to some of its limitations. given the limited number of countries included in the reviews, the results may not apply to all countries in the global north or south. some relevant studies might not have been captured within our specific review criteria (e.g., english language) and search by a single author; however, the application of inclusion and exclusion criteria to over 2000 abstracts manually offer confidence about the breadth of studies included/considered. further, we employed multiple search strategies including google search, specific journals for digital health and the reference lists of selected studies. conclusion this scoping review examined the potential of online mental health interventions in supporting access to mental health care in the global north and global south, reveals that mhapps for depression and anxiety are efficacious in improving symptoms across the examined regions. however, there are barriers restricting access to care such as public awareness in the global north and logistical barriers in the global south that must be addressed. a broader policy level emphasis is needed to address the logistical capabilities and cultural sensitivity of mhapps before readily implementing mhapps in marginalized communities. doing so necessitates establishing programs that would enable the co-construction of participant narratives on the ground in order to ensure the context relevancy of interventions and ihtp, 1(2), 176-190, 2021 cc by-nc-nd 4.0 issn 2563-9269 184 accessibility. future mhapp research should take a multi-pronged, bottom-up approach to develop humanistic systems of care where social context and living conditions are considered. the hope is that researchers replicate this study with various countries in the global north and south and include mhapps developed for other mental health conditions and other illnesses. references abel, e.a., shimada, s.l., wang, k., ramsey, c., skanderson, m., erdos, j., godleski, l., houston, t.k., & brandt, c.a. (2018). dual use of a patient portal and clinical video telehealth by veterans with mental health diagnoses: retrospective, cross-sectional analysis. journal of medical internet research, 20(11), e11350. ahmad, f., maule, c., wang, j., & fung, w.l.a. (2018). symptoms and experience of depression among chinese communities in the west: a scoping review. harvard review of psychiatry, 26(6), 340-351. andersson, g., & cuijpers, p. (2009). internet-based and other computerized psychological treatments for adult depression: a metaanalysis. cognitive behaviour therapy, 38, 196–205. andrews, g., cuijpers, p., craske, m.g., mcevoy, p., & titov, n. (2010). computer therapy for the anxiety and depressive disorders is effective, acceptable and practical health care: a metaanalysis. plos one, 5, e13196. arean, p.a., hallgren, k.a., jordan, j.t., gazzaley, a., atkins, d.c., heagerty, p.j., & anguera, j.a. (2016). the use and effectiveness of mobile apps for depression: results from a fully remote clinical trial. journal of medical internet research, 18(12), e330. arjadi, r., nauta, m.h., chowdhary, n., & bockting, c.l.h. (2015). a systematic review of online interventions for mental health in lowand middle-income countries: a neglected field. global mental health, 2, e12. arksey, h., & o'malley, l. (2005). scoping studies: towards a methodological framework. international journal of social research methodology, 8(1), 19-32. auyeung, l., & mo, p.k.h. (2018). the efficacy and mechanism of online positive psychological intervention (ppi) on improving well-being among chinese university students: a pilot study of the best possible self (bps) intervention. journal of happiness studies. braveman, p. (2014). what are health disparities and health equity? we need to be clear. public health reports, 129(1), 5-8. brynjolfsson, e., horton, j. j., ozimek, a., rock, d., sharma, g., & tuye, h. y. (2020). covid-19 and remote work: an early look at us data (no. w27344). national bureau of economic research. christensen, h. (2010). increasing access and effectiveness: using the internet to deliver low intensity cbt. in oxford guide to low intensity cbt intervention (ed. bennettlevy, j., richards, d. a., farrand, p., christensen, h., griffiths, k.m., kavanagh, d.j., klein, b., lau, m.a., proudfoot, j., ritterband, l., white, j., & williams, c.), pp. 53–68. oxford university press: oxford. dados, n., & connell, r. (2012). the global south. contexts, 11(1), 12-13. donker, t., van straten, a., riper, h., marks, i., andersson, g., & cuijpers, p. (2009). implementation of internet-based preventive interventions for depression and anxiety: role of support? the design of a randomized controlled trial. trials, 10, 59. fairburn, c.g., & patel, v. (2017). the impact of digital technology on psychological treatments and their dissemination. behavioral research therapy, 88, 19-25. fontil, v., mcdermott, k., tieu, l., rios, c., gibson, e., sweet, c. c., payne, m., & lyles, c. r. (2016). adaptation and feasibility study of a digital health program to prevent diabetes among low-income patients: results from a partnership between a digital health company and an academic research team. journal of diabetes research, 2016, 8472391. gopalkrishnan n. (2018). cultural diversity and mental health: considerations for policy and practice. front public health, 6, 179. hadjistavropoulos, h.d., pugh, n.e., hesser, h., & andersson, g. (2016a). predicting response to therapist-assisted internet-delivered cognitive behavior therapy for depression ihtp, 1(2), 176-190, 2021 cc by-nc-nd 4.0 issn 2563-9269 185 or anxiety within an open dissemination trial. behavior therapy, 47(2), 155-165. hadjistavropoulos, h.d., nugent, m.m., alberts, n.m., staples, l., dear, b.f., & titov, n. (2016b). transdiagnostic internet-delivered cognitive behaviour therapy in canada: an open trial comparing results of a specialized online clinic and nonspecialized community clinics. journal of anxiety disorders, 42, 19-29. howells, a., ivtzan, i., & eiroa-orosa, f.j. (2016). putting the ‘app’ in happiness: a randomised controlled trial of a smartphone-based mindfulness intervention to enhance wellbeing. journal of happiness studies, 17(1), 163-185. hung, s., li, m., chen, y., chiang, j., chen, y., & hung, g.c. (2016). smartphone-based ecological momentary assessment for chinese patients with depression: an exploratory study in taiwan. asian journal of psychiatry, 23, 131136. jones, s.l., hadjistavropoulos, h.d., & soucy, j.n. (2016). a randomized controlled trial of guided internet-delivered cognitive behaviour therapy for older adults with generalized anxiety. journal of anxiety disorders, 37, 1-9. kincheloe, j., & mclaren, p. (2005). rethinking critical theory and qualitative research in denzin, n. k., & lincoln, y. s. (eds). the sage handbook of qualitative research, sage publications ltd, thousand oaks, ca, 303-342. kishimoto, t., krieger, t., berger, t., qian, m., chen, h., & yang, y. (2016). internet-based cognitive behavioral therapy for social anxiety with and without guidance compared to a wait list in china: a propensity score study, psychotherapy psychosomatic, 85, 317-319. kohrt, b. a., asher, l., bhardwaj, a., fazel, m., jordans, m., mutamba, b. b., nadkarni, a., pedersen, g. a., singla, d. r., & patel, v. (2018). the role of communities in mental health care in lowand middle-income countries: a meta-review of components and competencies. international journal of environmental research and public health, 15(6), 1279. lipschitz, j., miller, c.j., hogan, t.p., burdick, k.e., lippin-foster, r., simon, s.r., & burgess, j. (2019). adoption of mobile apps for depression and anxiety: cross-sectional survey study on patient interest and barriers to engagement. jmir mental health, 6(1), e11334. mak, w.w.s., chan, a.t.y., cheung, e.y.l., lin, c.l.y., & ngai, k.c.s. (2015). enhancing web-based mindfulness training for mental health promotion with the health action process approach: randomized controlled trial. journal of medical internet research, 17(1), e8. mak, w.w., chio, f.h., chan, a.t., lui, w.w., & wu, e.k. (2017). the efficacy of internet-based mindfulness training and cognitivebehavioral training with telephone support in the enhancement of mental health among college students and young working adults: randomized controlled trial. journal of medical internet research, 19(3), e84. mathers, c.d., & loncar, d. (2006). projections of global mortality and burden of disease from 2002 to 2030. plos med, 3(11), e442. mills, c., & fernando, s. (2014). globalising mental health or pathologising the global south? mapping the ethics, theory and practice of global mental health. disability and the global south, 1(2), 188-202. mohr, d.c., tomasino, k.n., lattie, e.g., palac, h.l., kwasny, m.j., weingardt, k., karr, c.j., kaiser, s.m., rossom, r.c., bardsley, l.r., caccamo, l., stiles-shields, c., & schueller, s.m. (2017). intellicare: an eclectic, skillsbased app suite for the treatment of depression and anxiety. journal of medical internet research, 19(1), e10. nahar, p., kannuri, n.k., mikkilineni, s., murthy, g.v.s., & phillimore, p. (2017). mhealth and the management of chronic conditions in rural areas: a note of caution from southern india. anthropology & medicine, 24(1), 1-16. naslund, j. a., aschbrenner, k. a., araya, r., marsch, l. a., unützer, j., patel, v., & bartels, s. j. (2017). digital technology for treating and preventing mental disorders in low-income and middle-income countries: a narrative review of the literature. the lancet. psychiatry, 4(6), 486–500. patel, u., sobowale, k., fan, j., liu, n., kuwabara, s., lei, z., sherer, r., & van voorhees, b. (2017). cultural considerations for the adaptation of an internet-based intervention for ihtp, 1(2), 176-190, 2021 cc by-nc-nd 4.0 issn 2563-9269 186 depression prevention in mainland china. international journal of adolescent medicine and health, 29(5), 1. poushter, j. (2016). smartphone ownership and internet usage continues to climb in emerging economies. pew research center. poushter, j., bishop, c., & chwe, h. (2018). social media use continues to rise in developing countries, but plateaus across developed ones, washington: pew internet and american life project, available at: http://www.pewglobal.org/wpcontent/uploads/sites/2/2018/06/pewresearch-center_global-tech-social-mediause_2018.06.19.pdf (accessed 8 july 2019). pugh, n.e., hadjistavropoulos, h.d., & dirkse, d. (2016). a randomised controlled trial of therapist-assisted, internet-delivered cognitive behavior therapy for women with maternal depression. plos one, 11(3), e0149186. rathod, s., pinninti, n., irfan, m., gorczynski, p., rathod, p., gega, l., & naeem, f. (2017). mental health service provision in lowand middle-income countries. health services insights, 2017(10), e1178632917694350. ritchie, h., & roser, m. (2019). “mental health”, our world in data, available at: https://ourworldindata.org/mental-health (accessed 10 july 2019). salari, n., hosseinian-far, a., jalali, r., vaisi-raygani, a., rasoulpoor, s., mohammadi, m., rasoulpoor, s., & khaledi-paveh, b. (2020). prevalence of stress, anxiety, depression among the general population during the covid-19 pandemic: a systematic review and meta-analysis. globalization and health, 16(1), 57. tewari, a., kallakuri, s., devarapalli, s., jha, v., patel, a., & maulik, p.k. (2017). process evaluation of the systematic medical appraisal, referral and treatment (smart) mental health project in rural india. bmc psychiatry, 17(1), 385. the world bank. (2019). “gdp”, the world bank, available at: https://data.worldbank.org/indicator/ny.g dp.mktp.cd?most_recent_value_desc=true wang, j., lam, r.w., ho, k., attridge, m., lashewicz, b.m., patten, s.b., marchand, a., aiken, a., schmitz, n., gundu, s., rewari, n., hodgins, d., bulloch, a., & merali, z. (2016). preferred features of e-mental health programs for prevention of major depression in male workers: results from a canadian national survey. journal of medical internet research, 18(6), e132. wang, p. s., aguilar-gaxiola, s., alonso, j., angermeyer, m. c., borges, g., bromet, e. j., bruffaerts, r., de girolamo, g., de graaf, r., gureje, o., haro, j. m., karam, e. g., kessler, r. c., kovess, v., lane, m. c., lee, s., levinson, d., ono, y., petukhova, m., posada-villa, j., & wells, j. e. (2007). use of mental health services for anxiety, mood, and substance disorders in 17 countries in the who world mental health surveys. lancet (london, england), 370(9590), 841– 850. worldometers. (2019). “india population”, worldometers, available at: https://www.worldometers.info/worldpopulation/india-population (accessed 8 july 2019). world health organization. (2010). a conceptual framework for action on the social determinants of health: debates, policy & practice, case studies, world health organization, available at: http://apps.who.int/iris/bitstream/10665/4 4489/1/9789241500852_eng.pdf (accessed 10 july 2019). world health organization. (2020). depression. world health organization, available at: https://www.who.int/news-room/factsheets/detail/depression world health organization india. (2019). mental health in india, world health organization, available at: http://www.searo.who.int/india/topics/me ntal_health/about_mentalhealth/en/ (accessed 10 july 2019). world health organization. (2019). mental health, poverty and development, https://www.who.int/mental_health/policy /development/en/ (2019, accessed 24 november 2019). world health organization. (2018a). wha71.7, agenda item 12.4, digital health, https://apps.who.int/gb/ebwha/pdf_files/ wha71/a71_r7-en.pdf/ (accessed 24 november 2019). ihtp, 1(2), 176-190, 2021 cc by-nc-nd 4.0 issn 2563-9269 187 world health organization. (2013). who mental health action plan 2013-2020, world health organization, available at: https://apps.who.int/iris/bitstream/handle/ 10665/89966/9789241506021_eng.pdf;jses sionid=b91b49c31683c1a2b75ad1999812 af5f?sequence=1 (accessed 10 july 2019). world health organization. (2018b). world health report, world health organization, available at: https://www.who.int/whr/2001/media_cen tre/press_release/en/ (accessed 10 july 2019). ihtp, 1(2), 176-190, 2021 cc by-nc-nd 4.0 issn 2563-9269 188 figure 1: search flow electronic databases searched: psycinfo, medline, sociological abstracts, social science abstracts (n = 2,157) sc re en in g in cl ud ed el ig ib ili ty id en tif ic at io n records excluded based on abstracts failing to meet inclusion criteria (n = 2,126) full-text articles assessed for eligibility (n = 31) full-text articles excluded if: ♦ published before the year 2015 ♦ study design was a review ♦ population did not include canada, usa, china and/or india ♦ intervention was not online, internet-based or delivered through mobile device (n = 13) studies included in scoping review study (n = 18) titles/abstracts screened (n = 2,157) 1 article identified from the reference list of selected articles and scoped google and jmir manually ihtp, 1(2), 176-190, 2021 cc by-nc-nd 4.0 issn 2563-9269 189 table 1. selected studies for review 1st author & year location design sample abel ea, 2018 united states, bedford medical chart review n = 2,171,325; veterans arean pa, 2016 united states (all 50 states) rct n = 626; tx1 (n= 211), tx2 (n= 209), control (n= 206); mild to mod depression auyeung l & mo pkh, 2018 china, hong kong rct n = 100; tx (n= 48), control (n= 52); university students hadjistavropoulos hd, 2016a canada, saskatchewan exploratory n = 195; tx1 (n= 83) compared to tx2 (n= 112); report mild sx of depression/anxiety hadjistavropoulos hd, 2016b canada, saskatchewan uncontrol, open trial n = 338 upon completion; exhibiting lower intensity depression or anxiety howells a, 2016 11 countries, includes usa rct n = 121; tx (n= 57), control (n= 64); general public with smartphone hung s, 2016 china, taiwan exploratory (ema) n = 54 active users; chinese outpatients dx with depression jones sl, 2016 canada, saskatchewan rct n = 46; tx (n= 24), control (n= 22); older adults (≥60 years old) dx with gad kishimoto t, 2016 china (online) propensity score study n = 197; tx1 (n= 63), tx2 (n= 93), control (n= 41); chinese adults exhibiting sad lipschitz j, 2019 united states, boston survey n = 149; veterans mak wws, 2015 china, hong kong rct n= 321; tx1 (n= 105), tx2 (n= 104), control (n= 79); university members mak wws, 2017 china, hong kong rct n = 127 completed 3-month follow-up; college students and working adults mohr dc, 2017 united states, minnesota single-arm pilot trial n = 99; patients with elevated sx of depression/ anxiety ihtp, 1(2), 176-190, 2021 cc by-nc-nd 4.0 issn 2563-9269 190 nahar p, 2017 india, andhra pradesh qualitative interviews n = 21 (13 men, 8 women); diabetics who travelled to either of two clinics patel u, 2017 china, wuhan survey n = 20 students & n = 3 psychiatrists; medical school pugh ne, 2016 canada, saskatchewan rct n = 50; 25 per study arm; women dx with maternal depression tewari a, 2017 india, west godavari mixed methods n = 30 villages; exclusion any severe physical disorder that limits access wang j, 2016 canada, 10 provinces survey n = 841; working men at high (n = 511) & low (n= 330) depression risk abbreviations: dx diagnosed, ema ecological momentary assessment, gad – generalized anxiety disorder, mod – moderate, rct – randomized control trial, sad – social anxiety disorder, sx – symptoms, tx – treatment group, tx1 – treatment group 1, tx2 – treatment group 2 ihtp, 2(1), 51-66, 2022 cc by-nc-nd 4.0 issn 2563-9269 51 quality of life, anxiety, depression and psychological distress in patients with cancer during the covid 19 pandemic: a systematic review karunakalage isuri piyumika prabani1, hewaratne dassanayakege wimala thushari damayanthi1 1department of nursing, faculty of allied health sciences, university of peradeniya, sri lanka corresponding author: k. i. p. prabani (kisuripiyumika@gmail.com) abstract introduction and objectives: quality of life (qol) and psychological wellbeing deteriorate during the covid 19 pandemic in patients with cancer. purpose: this study aims to review the current evidence of qol, anxiety, depression, psychological distress, and their inter-relationship in patients with cancer and survivors during the covid 19 pandemic. moreover, this study identifies factors associated with qol and mental health in patients with cancer and survivors during the covid 19 pandemic. methods: an extensive electronic database search was conducted. articles published in english assessing cancer patients and cancer survivors’ qol and psychological wellbeing. results: twenty-seven articles with 22,134 participants were included. concerns related to contracting covid 19, along with potential treatment plans were predictors of impaired qol. advanced age, family support, being identified as a male and having less comorbid conditions were associated with the high level of qol. delay or change in treatment plan, contact with covid 19 positive individuals, and emotional vulnerability were found to be independently associated with high levels of anxiety, depression, and distress. conclusion: health professionals, caregivers and support services should pay more attention on qol and psychological wellbeing of the patients with cancer. counselling sessions, support services should be established to improve their life satisfaction and wellbeing. keywords cancer, covid 19, psychological care, quality of life introduction covid 19 pandemic has been shown to affect patients with chronic conditions, specifically those diagnosed with cancer (jammu et al. 2020; seven et al. 2021). cancer patients receiving chemotherapy experienced a higher number of adverse events related to the pandemic compared to the patients without anti-cancer treatments (chavez-macgregor et al. 2021). the immunocompromised state of cancer patients increases their risk of acquiring covid 19 infection which has led to increased levels of stress and symptom burden (pinato et al. 2021; seven et al. 2021; miaskowski et al. 2020). as well, lower levels of health-related quality of life (hrqol) have been shown to be a significant issue among patients living with cancer (msaouel et al. 2017). also, depression and anxiety have been shown to be common psychological issues within this cohort during the pandemic (hashemi et al. 2020; pilevarzadeh et al. 2019). hrqol and psychological wellbeing drastically changed during the covid 19 pandemic in patients with cancer and survivors; however, there does not appear to be any systematically collected data that identifies specific factors associated with quality of life (qol) and mental health in patients living with and those who have been diagnosed with cancer. this study aims to review the current evidence of ihtp, 2(1), 51-66, 2022 cc by-nc-nd 4.0 issn 2563-9269 52 qol, anxiety, depression, and psychological distress in patients with cancer and survivors during the covid 19 pandemic. moreover, this study identifies the factors associated with qol and mental health in patients with cancer and survivors. methods this is systematic review contains a qualitative analysis. a study protocol was registered and approved in the international prospective register of systematic reviews (prospero) crd42021234446. search strategy two independent authors (kipp and hdwtd) searched articles via four electronic databases; pubmed, who covid 19 global research database, cinahl, cochrane covid 19 study register, and the secondary search was done in google scholar. reference lists, similar articles, and citations were evaluated to identify the additional relevant articles. the initial search was conducted on december 24, 2020 and continued until february 6, 2021. keywords included in the search for articles consisted of: “quality of life”, “health status indicator”, “health outcomes”, “anxiety”, “depression”, “distress”, “mental*” (truncated), "psychology*” (truncated), “cancer*” (truncated), “malignan*” (truncated), “tumor”, “neoplasm”, “covid 19”, “corona” and “sars cov 2”. keywords were truncated and combined through boolean operators (“and”, “or”). the exact search string is identified in table 1. definitive keywords, data bases and exact search string were determined during the study piloting period. authors searched in google-scholar via repetitive key word combination to collect all relevant studies. inclusion and exclusion criteria original english publications: assessing the adult cancer patients (older than 18 years) or survivors (without time limits from the diagnosis) were included; study participants with other life limiting illnesses were excluded from the study. observational studies: cross-sectional or cohort studies were included. all the studies need to be subjected to assess the qol or anxiety or depression or psychological distress or all the outcomes during the covid 19 pandemic period. authors excluded the viewpoints, abstracts, commentaries, pre-proof papers, books, opinions, editorials, qualitative studies, and conference proceedings. assessment of bias study identification, screening, study selection, and quality appraisal were conducted by two independent authors (kipp and hdwtd). duplications were removed after the study screening process (figure 1). abstracts and titles were evaluated twice to avoid premature elimination of the studies and assessed for the relevance to the study. according to the national heart lung and blood institute (nhlbi) quality assessment tool for crosssectional and cohort studies (national heart lung and blood institute 2020) (see supplementary table: 2), the quality appraisal was conducted. studies with “good”, “fair” quality were included, and articles with “poor” quality were excluded. good quality studies have minimum risk of bias, and the findings are valid; fair quality studies have some chance for the bias; but still the findings are valid to include for the systematic review. nhlbi quality appraisal tool for cohort and cross-sectional studies contains 14 questions; the response “no” for at least one question indicates the chance of bias. answers as “yes” for all the components with “nonreported” or “not-applicable” have good quality in quality appraisal. two authors (kipp and hdwtd) assessed each studies’ quality, discussed the various discrepancies that were identified, and various study limitations encountered. we consider the term “quality” rather than the “risk of bias” which based on theoretical backgrounds (liberati et al. 2009; pocock et al. 2018). authors assess the best methodological and reporting quality that researchers able to do for the study. therefore, the quality of the included studies was rated based on both nhlbi tool components and the authors decision on the methodological quality data extraction kipp extracted the data from the selected studies and checked by hdwtd. a predefined data abstraction form was used for the data extraction process. author, published year and country, study ihtp, 2(1), 51-66, 2022 cc by-nc-nd 4.0 issn 2563-9269 53 design, study objectives, sample size, sample characteristics, study instruments, significant findings relevant to the study objectives, strengths and limitations of the studies were extracted. then, studies were arranged according to the subheadings. data synthesis and analysis this study data synthesis was conducted according to the campbell et al 2020; guidelines for reporting without meta-analysis in systematic reviews (campbell et al. 2020). the steps include, grouping the studies for synthesis, describe the standardised metric used, describe synthesis method, prioritise results for summary and synthesis, identify heterogeneity of reported studies, findings, and characteristics, check the certainty of the evidence, results presentation, and reporting (campbell et al. 2020). studies were grouped to according to the study objectives; studies assessed qol, and psychological impact were grouped separately; studies that assessed anxiety, depression and psychological distress were again sub-grouped. the instruments used to assess qol, anxiety, depression and psychological distress were encountered and assess their validity, reliability, and psychometric properties. in data synthesis, p values, odds ratios were considered; authors attentive on regression analysis to identify the independent associations with outcomes (qol, anxiety. depression and psychological distress). non-significant findings also identified and interpreted with the sample characteristics. sample size, statistical tests, quality of the data, and methodological quality were considered when study prioritizing. also, studies were prioritized according to the directness in relation to the study objectives and strength of the study findings; strong study findings (p<0.0000) via regression analysis were highlighted. study findings with only descriptive statistics were also considered. due to the clinical heterogeneity of the studies, qualitative synthesis was undertaken. certainty of the evidence was checked across all studies; quality of the studies, sample size and characteristics, strength of the effect estimate (p value, direction and strength of the correlation, odds ratio) were considered to ensure the certainty of the evidence. studies that compare the qol, anxiety, depression, and distress in pre and during the covid pandemic were used to identify how covid 19 effect on cancer patients’ living. results characteristics of included studies the study selection process is stated in the figure 1. twenty-seven articles were selected for final review (baffert et al. 2021; bargon et al. 2021; chapman et al. 2020; charsouei et al. 2021; x. chen et al. 2021; ciążyńska et al. 2020; falcone et al. 2020; ferrara et al. 2021; frey et al. 2020; van gorp et al. 2021; greco et al. 2020; gultekin et al. 2021; hu et al. 2020; jeppesen et al. 2020; juanjuan et al. 2020; karacin et al. 2020; lou et al. 2020; massicotte, ivers, and savard 2021; musche et al. 2020; d. w. l. ng et al. 2020; k. y. y. ng et al. 2020; van de poll-franse et al. 2020; romito et al. 2020; sigorski et al. 2020; swainston et al. 2020; wang et al. 2020; s. yang et al. 2021; yildiz kabak, atasavun uysal, and duger 2021). the study included 22,134; total population for the analysis; 9363 were males and 12,761 were females; 10 participants did not indicate their gender as male or female. this review includes the studies from netherland (bargon et al. 2020; van de poll-franse et al. 2020a), germany (musche et al. 2020), poland (ciążyńska et al. 2020; sigorski et al. 2020), china (x. chen et al. 2021; hu et al. 2020; juanjuan et al. 2020; d. w. l. ng et al. 2020; wang et al. 2020; s. yang et al. 2021), canada (massicotte, ivers, and savard 2021), france (baffert et al. 2021), denmark (jeppesen et al. 2020), turkey (karacin et al. 2020; yildiz kabak, atasavun uysal, and duger 2021), italy (falcone et al. 2020; ferrara et al. 2021; greco et al. 2020; romito et al. 2020), iran (charsouei et al. 2021), united kingdom(uk), united states (us) (chapman et al. 2020; lou et al. 2020; swainston et al. 2020), singapore (k. y. y. ng et al. 2020), and two online surveys conducted in multiple countries (frey et al. 2020; gultekin et al. 2021). fourteen studies assessed the anxiety, depression, and psychological distress among patients with cancer and survivors during the covid 19 pandemic (chapman et al. 2020; x. chen et al. 2021; frey et al. 2020; gultekin et al. 2021; hu et al. 2020; juanjuan et al. 2020; karacin et al. 2020; lou et al. 2020; massicotte, ivers, and savard 2021; d. w. l. ng et al. 2020; k. y. y. ng et al. 2020; romito et al. 2020; ihtp, 2(1), 51-66, 2022 cc by-nc-nd 4.0 issn 2563-9269 54 sigorski et al. 2020; swainston et al. 2020). seven studies reported the both qol and psychological impact (anxiety, depression, and psychological distress) (baffert et al., 2021; bargon et al. 2021; musche et al. 2020; van de poll-franse et al. 2020; s. yang et al.,2021; yildiz kabak, atasavun uysal, and duger 2021; wang et al. 2020). qol alone studied in six articles (ciążyńska et al. 2020; ferrara et al. 2021; jeppesen et al. 2020; falcone et al. 2020; charsouei et al. 2021; greco et al. 2020b). all the studies had used standard validated instruments to assess qol, anxiety, depression, and psychological distress. the seventeen studies had reported the “fair” quality and ten articles had reported “good” quality in quality appraisal. qol in patients with cancer and survivors during covid 19 seven studies used eortc qlq c30 questionnaire to assess (bargon et al. 2021; ciążyńska et al. 2020; falcone et al. 2020; jeppesen et al. 2020; van de pollfranse et al. 2020a; s. yang et al. 2021; yildiz kabak, atasavun uysal, and duger 2021). eq 5d 3l had used in one study (musche et al. 2020). sf 12 was used in two studies (baffert et al. 2021; ferrara et al. 2021) and sf 36 had used in one study (charsouei et al. 2021). wang et al. 2020 had used whoqol bref to assess qol. six studies had compared the qol in pre pandemic qol outcomes (baffert et al. 2021; bargon et al. 2021; ciążyńska et al. 2020; falcone et al. 2020; jeppesen et al. 2020; s. yang et al. 2021) and one study had compared with matched norm population (van de poll-franse et al. 2020a). qol status in patients with cancer during the covid 19 pandemic eortc qlq c30 is widely used qol assessment tool specially developed for the cancer patients. it contains five functional scales (physical, social, role, cognitive, and emotional functioning) and eight symptom scales including the symptoms of fatigue, nausea and vomiting, pain, dyspnea, sleep disturbances, appetite loss, constipation, and diarrhoea (giesinger et al. 2016). eortc qlq c30 was consist of 30 items; 28 items have 4 likert scale responses (not at all: 1, all little: 2, quite a bit: 3, very much:4). last two items assess the overall health and qol; it has seven numerical scales to rate the participants overall qol and health (giesinger et al. 2016). according to the eortc qlq c30, global qol ranged from 41.7 ±22.0 to 78.9± 16.6 in included studies. domain score for physical functioning ranged from 68.3 ±21.5 to 88.6 ±15.5, role functioning from 66.9 ±30.1 to 82.6 ±24.8, emotional functioning from 68.4 ±25.6 to 85.2 ±17.3, cognitive functioning from 69.9 ±25.9 to 85.2± 17.3 and social functioning 67.1± 25.7 to 67.1± 25.7. in addition, one study reported their domain scores as median and iqr s (falcone et al. 2020). eq 5d 3l is a valid reliable generic tool to measure qol. it consists of 5 subscales; mobility, self-care, usual activities, pain/discomfort, anxiety/depression; each subscale has 3 responses weighing the experience of the responder (euroqol research foundation 2018). musche et al., 2020 was stated the eq 5d 3l score as 66.05± 19.257 (musche et al. 2020). sf 36 is a generic valid tool which can easily administered to assess qol; it consists of eight subscales as physical functioning, role physical, bodily pain, general health, vitality, social functioning, role emotional, and mental health. subscale scores were summarized as physical component summary (pcs), role component summary (rcs) and mental component summary (mcs) (mitoma et al. 2016). sf 12 is derived from sf 36, and it also contains pcs and mcs (huo et al. 2018). in included 2 studies pcs mean scores ranged from 46.7 ± 12.4 to 51.4 ± 6.2 and mcs ranged from 36.1±14.3 to 50.1 ± 7.2 according to the sf 12. in qol comparison with the norm population, patients with cancer were significantly affected by the covid 19 (musche et al. 2020; van de poll-franse et al. 2020b). according to the ciążyńska et al. 2020, global qol, cognitive functioning, social functioning had significantly reduced; insomnia, appetite loss and financial difficulties had significantly exaggerated; baffert et al. 2021 also indicated the significant impairment of mental component summary scores in sf 36 after the lockdown, but not pcs (baffert et al. 2021). bargon et al. 2020 and s. yang et al. 2021 had showed, global qol, physical functioning, role functioning, emotional functioning, cognitive functioning, and social functioning had significantly increased during the covid 19 and insomnia was significantly reduced. jeppesen et al. 2020 and falcone et al. 2020 found the changes in qol domains in eortc qlq c30 compared to the pre-pandemic, but it is not statistically significant (falcone et al. 2020; jeppesen et al. 2020). ihtp, 2(1), 51-66, 2022 cc by-nc-nd 4.0 issn 2563-9269 55 factors associated with qol in patients with cancer during the covid 19 concerns related to covid 19 and contracting covid 19 were found to be strong independent predictors (p<0.001) of impaired emotional functioning, global qol (falcone et al. 2020; jeppesen et al. 2020) and impaired social functioning in patients with cancer (falcone et al. 2020). as well, reducing treatment intensity was an independent predictor of low qol in physical functioning, role functioning, emotional functioning, emotional functioning, cognitive functioning, social function; it worsens symptom scales in fatigue, nausea, vomiting, appetite loss, diarrhoea, pain, dyspnoea, insomnia, constipation and increased the financial difficulties (s. yang et al. 2021). difficulties of continuity of medical assistance is a significant independent predictor of qol according to the sf 12 scale (ferrara et al. 2021). advanced age significantly improved global qol (jeppesen et al. 2020), mental and emotional wellbeing (baffert et al. 2021; jeppesen et al. 2020) and low physical component summary scores (baffert et al. 2021). good family support and not living alone significantly and independently improve global qol, and emotional functioning (jeppesen et al. 2020; s. yang et al. 2021). male gender, fewer comorbid conditions improve the emotional functioning in patients with cancer; employment had positively influenced on global qol (jeppesen et al. 2020). anxiety, depression, and psychological distress in patients with cancer and survivors during the covid 19 pandemic among included studies, twenty-two studies had used generic tools to measure anxiety, depression, distress and one study had used covid 19 emotional impact scale. hospital anxiety depression scale (hads), general anxiety disorder-7 (gad-7), zung self-rating anxiety scale, beck anxiety inventory, state trait anxiety inventory-1 and 2 (stai 1and 2) were used scales to assess anxiety in included studies. depression was assessed via hads and patient health questionnaire (phq), distress thermometer and impact of event scalerevised (ies-r) were used to assess the psychological distress. hads is a widely used generic questionnaire that assess both anxiety and depression; it consists of 14 items and cut-off scores determine the level of anxiety; score 0-7: mild, 8-10: borderline and 11-21 indicate the severe anxiety (crawford et al. 2001; skapinakis 2014). gad7 contains the seven items which intended to measure generalized anxiety disorder in four-point likert scale: it measurers the anxiety symptoms within previous two weeks. higher scores indicate the severity of the disease (crawford et al. 2001). zung self-rating anxiety scale was developed to assess both psychological and somatic symptoms of the anxiety (dunstan and scott 2020). beck anxiety inventory consist of 21 items; item responses are recorded according to the four-point likert scale; thirteen questions assess the physical aspect, five questions assess the cognitive aspect, and three items have both physical and cognitive aspects of the anxiety (fydrich, dowdall, and chambless 1992). stai is a selfreported questionnaire consists of 20 items; stai 1 and 2 assessed via each 10 questions in the 20-item scale according to the 4-point likert scale (ilardi et al. 2021). phq-9 is 9 item questionnaires; it measures the symptoms and their frequency during the past two weeks (kroenke, spitzer, and williams 2001). iesr was designed to assess the subject distress response to a specific event, it consists of 22 items and assess the responses based on three main subscales namely avoidance, intrusion, and hyperarousal (ilardi et al. 2021). mean anxiety score ranged from 3.20 ± 3.23 to 9.5 ± 4.1 in hads score. in gad it ranged from 3.2±4.5 to 6.01± 5.35. phq depression scores ranged from 3.45± 3.61 to 8.1 ± 2.4. one study had reported the mean ±sd for distress via distress thermometer; two studies reported the mean values for distress via ies-r (19.7 ± 13.9 to 28.17± 18.23). anxiety scores were compared with the norm population; patients with cancer had experience significantly worst anxiety scores compared to the norm (d. w. l. ng et al. 2020; van de poll-franse et al. 2020a; s. yang et al. 2021). depression also significantly exaggerated during the pandemic than the pre-pandemic period (bargon et al. 2021). there are no studies with the comparison of distress levels of pre and during the covid 19 period. factors associated with anxiety, depression, and psychological distress during covid 19 ihtp, 2(1), 51-66, 2022 cc by-nc-nd 4.0 issn 2563-9269 56 delay in treatment/ care or change in treatment plan independently influenced their anxiety and depression level (chen et al. 2021; frey et al. 2020; gultekin et al. 2021; juanjuan et al. 2020; lou et al. 2020; massicotte, ivers, and savard 2021; swainston et al. 2020; s. yang et al. 2021). patients who had postponed their chemotherapy sessions due to covid 19 reported significantly high anxiety scores compared to the chemotherapy postponements due to other reasons (18.9±9.4 vs 3.3±1.6, p<0.001) (karacin et al. 2020). concerned on not being able to meet an oncology doctor during the pandemic period independently impact on anxiety (or: 1.94, ci: 1.352.8, p<0.001) (gultekin et al. 2021). covid 19 related stressors significantly increase the levels of anxiety and depression in patients with breast cancer; difficulty in obtaining medicine and essentials was a prominent concern for anxiety and depression; the higher degree of concern significant with a higher degree of anxiety and depression (massicotte, ivers, and savard 2021). close contact with covid 19 is another independent risk factor for deteriorated psychological wellbeing (juanjuan et al. 2020; d. w. l. ng et al. 2020); chinese patients with breast cancer and survivors reported that they have significantly high levels of anxiety following close contact with covid 19 [or: 3.178 (1.404-7.144), p = 0.005] (juanjuan et al. 2020). covid 19 emv is another factor that independently influenced anxiety, depression, and psychological distress in patients with cancer (chapman et al. 2020; swainston et al. 2020). high levels of covid 19 emv significantly predict the high levels of general anxiety (β: 0.41, p<0.001) and depression (β: 0.24, p<0.001) (swainston et al. 2020) and emotional distress (β: 0.34, p < 0.05) (chapman et al. 2020). the living status of the cancer patients during the covid 19 pandemic significantly affects their anxiety, depression, and psychological distress; living alone significantly increases the anxiety (x. chen et al. 2021; frey et al. 2020; hu et al. 2020; k. y. y. ng et al. 2020); living with family independently reduces the risk of depressive symptoms (hu et al. 2020). women with ovarian cancer, and breast cancer who are living alone reported higher levels of depression (chen et al. 2021; frey et al. 2020); moreover, patients with breast cancer who live alone reported high anxiety levels (or: 3.86, ci: 1.9-7.86) (chen et al. 2021). good family support independently reduces the incidence of anxiety (bargon et al. 2021). young age is an independent predictor of high anxiety and depression levels (frey et al. 2020). a high level of job security significantly reduced the level of depression and emotional distress (chapman et al. 2020). presence of comorbidity significant with high depression (x. chen et al. 2021; gultekin et al. 2021), and anxiety scores (see supplementary table: 1) (x. chen et al. 2021). female gender was a strong negative independent predictor of covid 19 related anxiety (sigorski et al. 2020) and general anxiety (baffert et al. 2021; romito et al. 2020; s. yang et al. 2021); female patients who had postponed their chemotherapy sessions had significantly high covid 19 related fear and anxiety than the females who had postponed due to other reasons (karacin et al. 2020). good qol strongly and independently significant with low anxiety (p < 0.001) and depression (p < 0.001) scores (wang et al., 2020); anxiety scores negatively correlated with general qol in patients with cancer (yildiz kabak, atasavun uysal, and duger 2021). discussion this study found the significant impact of covid 19 on qol, anxiety, depression, and psychological distress in patients with cancer; psychological health and qol had drastically changed during the pandemic period. being concerned about covid 19 and contact with covid 19 are strong independent predictors of low qol and deteriorated psychological health in patients with cancer during the covid 19 pandemic. reduced treatment intensity and high evaluation of online projects are independently influenced on qol. while delay in treatment care/plans and covid 19 emv are negatively influenced on the psychological health. moreover, living situation, age, female gender, and presence of comorbid conditions are effect on both qol and psychological health. general population and the patients with noninfectious chronic illnesses are experiencing low qol and high psychological burden during this pandemic; ihtp, 2(1), 51-66, 2022 cc by-nc-nd 4.0 issn 2563-9269 57 anxiety, depression, distress, stress, and posttraumatic stress disorder reported in general population (xiong et al. 2020; wu et al. 2021). female gender, young age, chronic illnesses, and frequent information concerning the covid 19 showed independent associations with the high psychological burden (xiong et al. 2020; yeli wang, kala, and jafar 2020). being with chronic illnesses, anxiety, depression and stress are independently effect on low qol in general population (algahtani et al. 2021). patients with cancer are mainly concerned about treatment delays, cancellations, diagnosis delays, and treatment interruptions (moraliyage et al. 2020). both healthcare-related factors and patient-related factors influenced their treatment delays; lockdowns and travel issues, financial problems, travel distance to treatment places, accommodation and food accessing difficulties are patient-related issues; and surgery delays, inadequate personal protective equipment and ventilators, and manpower shortage are the most common healthcare-related issues that causes treatments delays in cancer care (kumar and dey 2020). patients with active treatments had postponed or cancelled their treatments if they are treated with immunotherapy, hormone therapy, or active surveillance (van de poll-franse et al. 2020a). as well, a four-week treatment delay results in increased mortality in patients with cancer (luisa et al. 2020). prioritization and triage are essential concepts to limit the cancer-related mortality in patients with cancer during the pandemic. covid 19 fear is a prominent cause for psychological health deterioration in patients with cancer (momenimovahed et al. 2021). covid 19 related fear and anxiety exaggerate the worst cancer-related outcomes; it influence the decisions on treatment interruptions and cancellations (sutcuoglu et al. 2020; vanni et al. 2020). social isolation leads to decreased social functioning and psychological wellbeing (jammu et al. 2021; miaskowski et al. 2020); loneliness occurs due to the lockdowns, fear of contact with covid 19 and lack of social interactions, and limited visitors (murayama, okubo, and tabuchi 2021; schellekens and van der lee 2020; yan et al. 2020). it is essential to implement interventions to overcome loneliness and loneliness associated psychological impact in patients with cancer. even in the non-pandemic time, some demographic variables had an independent impact on qol and psychological wellbeing (bradley et al. 2006; dieperink et al. 2012; laghousi et al. 2019; morrison et al. 2017; parker et al. 2003; zou, hu, and mccoy 2014). female gender and young age are negative independent predictors of low qol and mental health (bradley et al. 2006; geue et al. 2014; laghousi et al. 2019; morrison et al. 2017). old, aged cancer patients who are receiving satisfiable social support experience good qol in the mental health domain and less anxiety and depression (parker et al. 2003; zou, hu, and mccoy 2014). moreover, living alone significantly reduced the qol in patients with cancer during the pandemic and non-pandemic periods (dieperink et al. 2012) this finding showed that the factors associated with qol, anxiety, depression and distress in non-pandemic period similarly effect in the pandemic time. online events and treatments significantly influenced qol in patients with cancer. covid 19 related thoughts and views lead to cancer treatment interruptions. continued treatments via a virtual environment is better than interruptions. treating in virtual environment is common in this pandemic. it reduces public exposure and risk of the contract with covid 19 (loree et al. 2021). to work with distant learning methods, health care workers need more training; telehealth is a convenient intervention to overcome covid 19 associated barriers to continue patient care (mink et al. 2021; paterson et al. 2020). the effect of treating for cancer patients in virtual environment on their qol and psychological health was not studied yet. it is recommended to vaccinate the cancer patients against the covid 19 (national comprehensive cancer network 2021); however, the impact of covid 19 vaccination on qol and psychological wellbeing in patients with cancer was not studied yet. strength and limitations this study is the first attempt to provide more generalized knowledge on qol, anxiety, depression, and psychological distress in patients with cancer during the covid 19 pandemic. this study followed systematic review standard guidelines, protocols exclusively. search techniques, designed to collect all the relevant evidence. quality appraisal of selected articles before inclusion ensure the minimum bias of ihtp, 2(1), 51-66, 2022 cc by-nc-nd 4.0 issn 2563-9269 58 the study. however, accessible databases are limited for this study. moreover, representation of evidence in the african and asian regions are negligible due to lack of studies, especially in developing and middledeveloped countries. it was difficult to compare the studies due to the inconsistent scales used across the included studies; qol, anxiety, depression and psychological distress were reported in different ways by using different scales. conclusion qol and psychological wellbeing are significantly deteriorated among patients with cancer due to the covid 19 pandemic. covid 19 related events adversely influenced patients' wellbeing. treatment delay/change/postponement/ cancellation, concerns of covid 19: contact with covid 19, female gender, advanced age, living alone, presence of comorbid conditions, good family support are factors that independently influenced qol and psychological wellbeing of the patients with cancer. online events improve patients’ satisfaction, reduce anxiety and depression. oncologists and other health professionals should design appropriate interventions to improve the life satisfaction and mental health in patients with cancer. moreover, research field on qol, and psychological impact due to covid 19 should be extended in african, asian regions due to lack of evidence. oncologists and onco-researchers in those regions should make evidence, research to fact find and evaluate the psychobehavioural interventions to upgrade the life satisfaction in patients with cancer during the pandemic. virtual counselling sessions, psychological support is crucial during this pandemic for the patients with cancer. references baffert, k., darbas, t., lebrun-ly, v., pestremunier, j., peyramaure, c., descours, c., mondoly, m., latrouite, s., bignon, e., nicouleau, s., geyl, s., leobon, s., & deluche, e. (2021). quality of life of patients with cancer during the covid-19 pandemic. in vivo, 35(1), 663-670. https://doi.org/10.21873/invivo.12306 bargon, c. a., batenburg, m. c., van stam, l. e., mink van der molen, d. r., van dam, i. e., van der leij, f., baas, i. o., ernst, m. f., maarse, w., vermulst, n., schoenmaeckers, e. j., van dalen, t., bijlsma, r. m., young-afat, d. a., doeksen, a., & verkooijen, h. m. (2020). impact of the covid-19 pandemic on patient-reported outcomes of breast cancer patients and survivors. jnci cancer spectrum, 5(1). https://doi.org/10.1093/jncics/pkaa104 bradley, s., rose, s., lutgendorf, s., costanzo, e., & anderson, b. (2006). quality of life and mental health in cervical and endometrial cancer survivors. gynecologic oncology, 100(3), 479-486. https://doi.org/10.1016/j.ygyno.2005.08.02 3 chapman, b., swainston, j., grunfeld, e. a., & derakshan, n. (2020). covid-19 outbreak effects on job security and emotional functioning amongst women living with breast cancer. frontiers in psychology, 11. https://doi.org/10.3389/fpsyg.2020.582014 charsouei, s., zamani esfahlani, m., dorosti, a., & eghdam zamiri, r. (2020). effects of covid19 pandemic on perceived stress, quality of life, and coping strategies of women with breast cancer with spinal metastasis under chemotherapy. international journal of women's health and reproduction sciences, 9(1), 055-060. https://doi.org/10.15296/ijwhr.2021.10 chavez-macgregor, m., lei, x., zhao, h., scheet, p., & giordano, s. h. (2022). evaluation of covid19 mortality and adverse outcomes in us patients with or without cancer. jama oncology, 8(1), 69. https://doi.org/10.1001/jamaoncol.2021.51 48 chen, x., wang, l., liu, l., jiang, m., wang, w., zhou, x., & shao, j. (2021). factors associated with psychological distress among patients with breast cancer during the covid-19 pandemic: a cross-sectional study in wuhan, china. supportive care in cancer, 29(8), 4773-4782. https://doi.org/10.1007/s00520-021-059944 chen, y. s., zhou, z. n., glynn, s. m., frey, m. k., balogun, o. d., kanis, m., holcomb, k., gorelick, c., thomas, c., christos, p. j., & chapman‐davis, e. (2021). financial toxicity, mental health, and gynecologic cancer https://doi.org/10.21873/invivo.12306 https://doi.org/10.1093/jncics/pkaa104 https://doi.org/10.1016/j.ygyno.2005.08.023 https://doi.org/10.1016/j.ygyno.2005.08.023 https://doi.org/10.3389/fpsyg.2020.582014 https://doi.org/10.15296/ijwhr.2021.10 https://doi.org/10.1001/jamaoncol.2021.5148 https://doi.org/10.1001/jamaoncol.2021.5148 https://doi.org/10.1007/s00520-021-05994-4 https://doi.org/10.1007/s00520-021-05994-4 ihtp, 2(1), 51-66, 2022 cc by-nc-nd 4.0 issn 2563-9269 59 treatment: the effect of the coronavirus disease 2019 (covid‐19) pandemic among low‐income women in new york city. cancer. https://doi.org/10.1002/cncr.33537 ciążyńska, m., pabianek, m., szczepaniak, k., ułańska, m., skibińska, m., owczarek, w., narbutt, j., & lesiak, a. (2020). quality of life of cancer patients during coronavirus disease ( covid ‐19) pandemic. psychooncology, 29(9), 1377-1379. https://doi.org/10.1002/pon.5434 crawford, j. r., henry, j. d., crombie, c., & taylor, e. p. (2001). normative data for the hads from a large non-clinical sample. british journal of clinical psychology, 40(4), 429-434. https://doi.org/10.1348/014466501163904 defining anxiety disorders. (n.d.). oxford medicine online. https://oxfordmedicine.com/view/10.1093/ 9780195173642.001.0001/med9780195173642-chapter-10 depression: definition. (2021, march 18). https://www.euro.who.int/en/healthtopics/noncommunicablediseases/pages/news/news/2012/10/depre ssion-in-europe/depression-definition dieperink, k. b., hansen, s., wagner, l., johansen, c., andersen, k. k., & hansen, o. (2012). living alone, obesity and smoking: important factors for quality of life after radiotherapy and androgen deprivation therapy for prostate cancer. acta oncologica, 51(6), 722-729. https://doi.org/10.3109/0284186x.2012.68 2627 dunstan, d. a., & scott, n. (2020). norms for zung’s self-rating anxiety scale. bmc psychiatry, 20(1). https://doi.org/10.1186/s12888-0192427-6 falcone, r., grani, g., ramundo, v., melcarne, r., giacomelli, l., filetti, s., & durante, c. (2020). cancer care during covid-19 era: the quality of life of patients with thyroid malignancies. frontiers in oncology, 10. https://doi.org/10.3389/fonc.2020.01128 ferrara, m., langiano, e., falese, l., de marco, a., & de vito, e. (2021). quality of life and psychosocial impact of the lockdown due to the covid-19 pandemic on patients with cancer: a cross-sectional study. proceedings of the 3rd international electronic conference on environmental research and public health —public health issues in the context of the covid-19 pandemic. https://doi.org/10.3390/ecerph-3-09021 ferreira, l. n., pereira, l. n., da fé brás, m., & ilchuk, k. (2021). quality of life under the covid-19 quarantine. quality of life research, 30(5), 1389-1405. https://doi.org/10.1007/s11136-020-02724x frey, m. k., ellis, a. e., zeligs, k., chapman-davis, e., thomas, c., christos, p. j., kolev, v., prasadhayes, m., cohen, s., holcomb, k., & blank, s. v. (2020). impact of the coronavirus disease 2019 pandemic on the quality of life for women with ovarian cancer. american journal of obstetrics and gynecology, 223(5), 725.e1-725.e9. https://doi.org/10.1016/j.ajog.2020.06.049 fydrich, t., dowdall, d., & chambless, d. l. (1992). reliability and validity of the beck anxiety inventory. journal of anxiety disorders, 6(1), 55-61. https://doi.org/10.1016/08876185(92)90026-4 gasparri, m. l., gentilini, o. d., lueftner, d., kuehn, t., kaidar-person, o., & poortmans, p. (2020). changes in breast cancer management during the corona virus disease 19 pandemic: an international survey of the european breast cancer research association of surgical trialists (eubreast). the breast, 52, 110-115. https://doi.org/10.1016/j.breast.2020.05.00 6 geue, k., sender, a., schmidt, r., richter, d., hinz, a., schulte, t., brähler, e., & stöbel-richter, y. (2013). gender-specific quality of life after cancer in young adulthood: a comparison with the general population. quality of life research, 23(4), 1377-1386. https://doi.org/10.1007/s11136-013-0559-6 giesinger, j. m., kuijpers, w., young, t., tomaszewski, k. a., friend, e., zabernigg, a., holzner, b., & aaronson, n. k. (2016). thresholds for clinical importance for four key domains of the eortc qlq-c30: physical functioning, emotional functioning, fatigue and pain. health and quality of life outcomes, 14(1). https://doi.org/10.1186/s12955-016-0489-4 https://doi.org/10.1002/cncr.33537 https://doi.org/10.1002/pon.5434 https://doi.org/10.1348/014466501163904 https://oxfordmedicine.com/view/10.1093/9780195173642.001.0001/med-9780195173642-chapter-10 https://oxfordmedicine.com/view/10.1093/9780195173642.001.0001/med-9780195173642-chapter-10 https://oxfordmedicine.com/view/10.1093/9780195173642.001.0001/med-9780195173642-chapter-10 https://www.euro.who.int/en/health-topics/noncommunicable-diseases/pages/news/news/2012/10/depression-in-europe/depression-definition https://www.euro.who.int/en/health-topics/noncommunicable-diseases/pages/news/news/2012/10/depression-in-europe/depression-definition https://www.euro.who.int/en/health-topics/noncommunicable-diseases/pages/news/news/2012/10/depression-in-europe/depression-definition https://www.euro.who.int/en/health-topics/noncommunicable-diseases/pages/news/news/2012/10/depression-in-europe/depression-definition https://doi.org/10.3109/0284186x.2012.682627 https://doi.org/10.3109/0284186x.2012.682627 https://doi.org/10.1186/s12888-019-2427-6 https://doi.org/10.1186/s12888-019-2427-6 https://doi.org/10.3389/fonc.2020.01128 https://doi.org/10.3390/ecerph-3-09021 https://doi.org/10.1007/s11136-020-02724-x https://doi.org/10.1007/s11136-020-02724-x https://doi.org/10.1016/j.ajog.2020.06.049 https://doi.org/10.1016/0887-6185(92)90026-4 https://doi.org/10.1016/0887-6185(92)90026-4 https://doi.org/10.1016/j.breast.2020.05.006 https://doi.org/10.1016/j.breast.2020.05.006 https://doi.org/10.1007/s11136-013-0559-6 https://doi.org/10.1186/s12955-016-0489-4 ihtp, 2(1), 51-66, 2022 cc by-nc-nd 4.0 issn 2563-9269 60 greco, f., altieri, v. m., esperto, f., mirone, v., & scarpa, r. m. (2021). impact of covid-19 pandemic on health-related quality of life in uro-oncologic patients: what should we wait for? clinical genitourinary cancer, 19(2), e63-e68. https://doi.org/10.1016/j.clgc.2020.07.008 gultekin, m., ak, s., ayhan, a., strojna, a., pletnev, a., fagotti, a., perrone, a. m., erzeneoglu, b. e., temiz, b. e., lemley, b., soyak, b., hughes, c., cibula, d., haidopoulos, d., brennan, d., cola, e., steen‐banasik, e., urkmez, e., akilli, h., … fotopoulou, c. (2020). perspectives, fears and expectations of patients with gynaecological cancers during the covid‐19 pandemic: a pan‐ european study of the european network of gynaecological cancer advocacy groups (engage). cancer medicine, 10(1), 208-219. https://doi.org/10.1002/cam4.3605 hashemi, s., rafiemanesh, h., aghamohammadi, t., badakhsh, m., amirshahi, m., sari, m., behnamfar, n., & roudini, k. (2019). prevalence of anxiety among breast cancer patients: a systematic review and metaanalysis. breast cancer, 27(2), 166-178. https://doi.org/10.1007/s12282-019-010319 hu, l., tao, h., xu, x., chen, h., chang, k., pei, x., hao, f., he, l., chen, y., liang, z., luo, t., lin, z., lv, w., & long, f. (2020). factors for peripherally inserted central catheters care delay in cancer patients during the covid-19 pandemic. annals of palliative medicine, 9(6), 3818-3829. https://doi.org/10.21037/apm-20-1887 huo, t., guo, y., shenkman, e., & muller, k. (2018). assessing the reliability of the short form 12 (sf-12) health survey in adults with mental health conditions: a report from the wellness incentive and navigation (win) study. health and quality of life outcomes, 16(1). https://doi.org/10.1186/s12955-0180858-2 ilardi, c. r., gamboz, n., iavarone, a., chieffi, s., & brandimonte, m. a. (2021). psychometric properties of the stai-y scales and normative data in an italian elderly population. aging clinical and experimental research, 33(10), 2759-2766. https://doi.org/10.1007/s40520-021-018150 jammu, a. s., chasen, m. r., lofters, a. k., & bhargava, r. (2020). systematic rapid living review of the impact of the covid-19 pandemic on cancer survivors: update to august 27, 2020. supportive care in cancer, 29(6), 2841-2850. https://doi.org/10.1007/s00520-020-05908w jeppesen, s. s., bentsen, k. k., jørgensen, t. l., holm, h. s., holst-christensen, l., tarpgaard, l. s., dahlrot, r. h., & eckhoff, l. (2020). quality of life in patients with cancer during the covid-19 pandemic – a danish cross-sectional study (copicads). acta oncologica, 60(1), 4-12. https://doi.org/10.1080/0284186x.2020.18 30169 juanjuan, l., santa-maria, c. a., hongfang, f., lingcheng, w., pengcheng, z., yuanbing, x., yuyan, t., zhongchun, l., bo, d., meng, l., qingfeng, y., feng, y., yi, t., shengrong, s., xingrui, l., & chuang, c. (2020). patientreported outcomes of patients with breast cancer during the covid-19 outbreak in the epicenter of china: a cross-sectional survey study. clinical breast cancer, 20(5), e651e662. https://doi.org/10.1016/j.clbc.2020.06.003 kabak, v. y., uysal, s. a., & duger, t. (2020). screening supportive care needs, compliance to exercise program, quality of life, and anxiety level during the covid-19 pandemic in individuals treated with hematopoietic stem cell transplantation. https://doi.org/10.21203/rs.3.rs-64169/v1 kabak, v. y., uysal, s. a., & duger, t. (2020). screening supportive care needs, compliance to exercise program, quality of life, and anxiety level during the covid-19 pandemic in individuals treated with hematopoietic stem cell transplantation. https://doi.org/10.21203/rs.3.rs-64169/v1 karacin, c., bilgetekin, i., b basal, f., & oksuzoglu, o. b. (2020). how does covid-19 fear and anxiety affect chemotherapy adherence in patients with cancer. future oncology, 16(29), 2283-2293. https://doi.org/10.2217/fon-2020-0592 https://doi.org/10.1016/j.clgc.2020.07.008 https://doi.org/10.1002/cam4.3605 https://doi.org/10.1007/s12282-019-01031-9 https://doi.org/10.1007/s12282-019-01031-9 https://doi.org/10.21037/apm-20-1887 https://doi.org/10.1186/s12955-018-0858-2 https://doi.org/10.1186/s12955-018-0858-2 https://doi.org/10.1007/s40520-021-01815-0 https://doi.org/10.1007/s40520-021-01815-0 https://doi.org/10.1007/s00520-020-05908-w https://doi.org/10.1007/s00520-020-05908-w https://doi.org/10.1080/0284186x.2020.1830169 https://doi.org/10.1080/0284186x.2020.1830169 https://doi.org/10.1016/j.clbc.2020.06.003 https://doi.org/10.21203/rs.3.rs-64169/v1 https://doi.org/10.21203/rs.3.rs-64169/v1 https://doi.org/10.2217/fon-2020-0592 ihtp, 2(1), 51-66, 2022 cc by-nc-nd 4.0 issn 2563-9269 61 kroenke, k., spitzer, r. l., & williams, j. b. (2001). the phq-9. journal of general internal medicine, 16(9), 606-613. https://doi.org/10.1046/j.15251497.2001.016009606.x kumar, d., & dey, t. (2020). treatment delays in oncology patients during covid-19 pandemic: a perspective. journal of global health, 10(1). https://doi.org/10.7189/jogh.10.010367 laghousi, d., jafari, e., nikbakht, h., nasiri, b., shamshirgaran, m., & aminisani, n. (2019). gender differences in health-related quality of life among patients with colorectal cancer. journal of gastrointestinal oncology, 10(3), 453-461. https://doi.org/10.21037/jgo.2019.02.04 liberati, a. (2009). the prisma statement for reporting systematic reviews and metaanalyses of studies that evaluate health care interventions: explanation and elaboration. annals of internal medicine, 151(4), w. https://doi.org/10.7326/0003-4819-151-4200908180-00136 loree, j. m., dau, h., rebić, n., howren, a., gastonguay, l., mctaggart-cowan, h., gill, s., raghav, k., & de vera, m. a. (2021). virtual oncology appointments during the initial wave of the covid-19 pandemic: an international survey of patient perspectives. current oncology, 28(1), 671-677. https://doi.org/10.3390/curroncol2801006 5 lou, e., teoh, d., brown, k., blaes, a., holtan, s. g., jewett, p., parsons, h., mburu, e. w., thomaier, l., hui, j. y., nelson, h. h., & vogel, r. i. (2020). perspectives of cancer patients and their health during the covid19 pandemic. plos one, 15(10), e0241741. https://doi.org/10.1371/journal.pone.0241 741 massicotte, v., ivers, h., & savard, j. (2021). covid19 pandemic stressors and psychological symptoms in breast cancer patients. current oncology, 28(1), 294-300. https://doi.org/10.3390/curroncol2801003 4 miaskowski, c., paul, s. m., snowberg, k., abbott, m., borno, h., chang, s., chen, l. m., cohen, b., hammer, m. j., kenfield, s. a., kober, k. m., levine, j. d., pozzar, r., rhoads, k. f., van blarigan, e. l., & van loon, k. (2020). stress and symptom burden in oncology patients during the covid-19 pandemic. journal of pain and symptom management, 60(5), e25e34. https://doi.org/10.1016/j.jpainsymman.202 0.08.037 mink van der molen, d. r., bargon, c. a., batenburg, m. c., van stam, l. e., van dam, i. e., baas, i. o., ernst, m. f., maarse, w., sier, m., schoenmaeckers, e. j., van dalen, t., bijlsma, r. m., doeksen, a., van der leij, f., young-afat, d. a., & verkooijen, h. m. (2021). the impact of the covid-19 pandemic on perceived access to health care and preferences for health care provision in individuals (being) treated for breast cancer. breast cancer research and treatment, 191(3), 553-564. https://doi.org/10.1007/s10549-021-064583 mitoma, j., kitaoka, m., asakura, h., anyenda, e. o., hori, d., tao, n. t., hamagishi, t., hayashi, k., suzuki, f., shimizu, y., tsujiguchi, h., kambayashi, y., hibino, y., konoshita, t., sagara, t., shibata, a., & nakamura, h. (2016). prevalence of chronic pain, especially headache, and relationship with health-related quality of life in middleaged japanese residents. health, 08(01), 116-124. https://doi.org/10.4236/health.2016.81014 momenimovahed, z., salehiniya, h., hadavandsiri, f., allahqoli, l., günther, v., & alkatout, i. (2021). psychological distress among cancer patients during covid-19 pandemic in the world: a systematic review. frontiers in psychology, 12. https://doi.org/10.3389/fpsyg.2021.682154 moraliyage, h., de silva, d., ranasinghe, w., adikari, a., alahakoon, d., prasad, r., lawrentschuk, n., & bolton, d. (2020). cancer in lockdown: impact of the covid-19 pandemic on patients with cancer. the oncologist, 26(2), e342-e344. https://doi.org/10.1002/onco.13604 morrison, e. j., novotny, p. j., sloan, j. a., yang, p., patten, c. a., ruddy, k. j., & clark, m. m. (2017). emotional problems, quality of life, and symptom burden in patients with lung https://doi.org/10.1046/j.1525-1497.2001.016009606.x https://doi.org/10.1046/j.1525-1497.2001.016009606.x https://doi.org/10.7189/jogh.10.010367 https://doi.org/10.21037/jgo.2019.02.04 https://doi.org/10.7326/0003-4819-151-4-200908180-00136 https://doi.org/10.7326/0003-4819-151-4-200908180-00136 https://doi.org/10.3390/curroncol28010065 https://doi.org/10.3390/curroncol28010065 https://doi.org/10.1371/journal.pone.0241741 https://doi.org/10.1371/journal.pone.0241741 https://doi.org/10.3390/curroncol28010034 https://doi.org/10.3390/curroncol28010034 https://doi.org/10.1016/j.jpainsymman.2020.08.037 https://doi.org/10.1016/j.jpainsymman.2020.08.037 https://doi.org/10.1007/s10549-021-06458-3 https://doi.org/10.1007/s10549-021-06458-3 https://doi.org/10.4236/health.2016.81014 https://doi.org/10.3389/fpsyg.2021.682154 https://doi.org/10.1002/onco.13604 ihtp, 2(1), 51-66, 2022 cc by-nc-nd 4.0 issn 2563-9269 62 cancer. clinical lung cancer, 18(5), 497-503. https://doi.org/10.1016/j.cllc.2017.02.008 msaouel, p., gralla, r. j., jones, r. a., & hollen, p. j. (2017). key issues affecting quality of life and patient-reported outcomes in prostate cancer: an analysis conducted in 2128 patients with initial psychometric assessment of the prostate cancer symptom scale (pcss). bmj supportive & palliative care, bmjspcare-2016-001146. https://doi.org/10.1136/bmjspcare-2016001146 murayama, h., okubo, r., & tabuchi, t. (2021). undefined. international journal of environmental research and public health, 18(16), 8238. https://doi.org/10.3390/ijerph18168238 musche, v., bäuerle, a., steinbach, j., schweda, a., hetkamp, m., weismüller, b., kohler, h., beckmann, m., herrmann, k., tewes, m., schadendorf, d., skoda, e., & teufel, m. (2020). covid-19-related fear and healthrelated safety behavior in oncological patients. frontiers in psychology, 11. https://doi.org/10.3389/fpsyg.2020.01984 national comprehensive cancer network. (2022). recommendations of the national comprehensive cancer network (nccn) advisory committee on covid-19 vaccination and pre-exposure prophylaxis. https://www.nccn.org/docs/defaultsource/covid-19/2021_covid19_vaccination_guidance_v50.pdf?sfvrsn=b483da2b_74 ng, d. w., chan, f. h., barry, t. j., lam, c., chong, c. y., kok, h. c., liao, q., fielding, r., & lam, w. w. (2020). psychological distress during the 2019 coronavirus disease ( covid ‐19) pandemic among cancer survivors and healthy controls. psycho-oncology, 29(9), 1380-1383. https://doi.org/10.1002/pon.5437 ng, k. y., zhou, s., tan, s. h., ishak, n. d., goh, z. z., chua, z. y., chia, j. m., chew, e. l., shwe, t., mok, j. k., leong, s. s., lo, j. s., ang, z. l., leow, j. l., lam, c. w., kwek, j. w., dent, r., tuan, j., lim, s. t., … ngeow, j. (2020). understanding the psychological impact of covid-19 pandemic on patients with cancer, their caregivers, and health care workers in singapore. jco global oncology, (6), 14941509. https://doi.org/10.1200/go.20.00374 parker, p. a., baile, w. f., moor, c. d., & cohen, l. (2003). psychosocial and demographic predictors of quality of life in a large sample of cancer patients. psycho-oncology, 12(2), 183-193. https://doi.org/10.1002/pon.635 paterson, c., bacon, r., dwyer, r., morrison, k. s., toohey, k., o'dea, a., slade, j., mortazavi, r., roberts, c., pranavan, g., cooney, c., nahon, i., & hayes, s. c. (2020). the role of telehealth during the covid-19 pandemic across the interdisciplinary cancer team: implications for practice. seminars in oncology nursing, 36(6), 151090. https://doi.org/10.1016/j.soncn.2020.1510 90 pilevarzadeh, m., amirshahi, m., afsargharehbagh, r., rafiemanesh, h., hashemi, s., & balouchi, a. (2019). global prevalence of depression among breast cancer patients: a systematic review and meta-analysis. breast cancer research and treatment, 176(3), 519-533. https://doi.org/10.1007/s10549-019-052713 pinato, d. j., tabernero, j., bower, m., scotti, l., patel, m., colomba, e., dolly, s., loizidou, a., chester, j., mukherjee, u., zambelli, a., dalla pria, a., aguilar-company, j., ottaviani, d., chowdhury, a., merry, e., salazar, r., bertuzzi, a., brunet, j., … iglesias, m. (2021). prevalence and impact of covid-19 sequelae on treatment and survival of patients with cancer who recovered from sars-cov-2 infection: evidence from the oncovid retrospective, multicentre registry study. the lancet oncology, 22(12), 1669-1680. https://doi.org/10.1016/s14702045(21)00573-8 pocock, n. s., nguyen, l. h., lucero-prisno iii, d. e., zimmerman, c., & oram, s. (2018). occupational, physical, sexual and mental health and violence among migrant and trafficked commercial fishers and seafarers from the greater mekong subregion (gms): systematic review. global health research and policy, 3(1). https://doi.org/10.1186/s41256-018-0083-x https://doi.org/10.1016/j.cllc.2017.02.008 https://doi.org/10.1136/bmjspcare-2016-001146 https://doi.org/10.1136/bmjspcare-2016-001146 https://doi.org/10.3390/ijerph18168238 https://doi.org/10.3389/fpsyg.2020.01984 https://www.nccn.org/docs/default-source/covid-19/2021_covid-19_vaccination_guidance_v5-0.pdf?sfvrsn=b483da2b_74 https://www.nccn.org/docs/default-source/covid-19/2021_covid-19_vaccination_guidance_v5-0.pdf?sfvrsn=b483da2b_74 https://www.nccn.org/docs/default-source/covid-19/2021_covid-19_vaccination_guidance_v5-0.pdf?sfvrsn=b483da2b_74 https://www.nccn.org/docs/default-source/covid-19/2021_covid-19_vaccination_guidance_v5-0.pdf?sfvrsn=b483da2b_74 https://doi.org/10.1002/pon.5437 https://doi.org/10.1200/go.20.00374 https://doi.org/10.1002/pon.635 https://doi.org/10.1016/j.soncn.2020.151090 https://doi.org/10.1016/j.soncn.2020.151090 https://doi.org/10.1007/s10549-019-05271-3 https://doi.org/10.1007/s10549-019-05271-3 https://doi.org/10.1016/s1470-2045(21)00573-8 https://doi.org/10.1016/s1470-2045(21)00573-8 https://doi.org/10.1186/s41256-018-0083-x ihtp, 2(1), 51-66, 2022 cc by-nc-nd 4.0 issn 2563-9269 63 romito, f., dellino, m., loseto, g., opinto, g., silvestris, e., cormio, c., guarini, a., & minoia, c. (2020). psychological distress in outpatients with lymphoma during the covid-19 pandemic. frontiers in oncology, 10. https://doi.org/10.3389/fonc.2020.01270 schellekens, m. p., & lee, m. l. (2020). loneliness and belonging: exploring experiences with the covid ‐19 pandemic in psycho‐ oncology. psycho-oncology, 29(9), 13991401. https://doi.org/10.1002/pon.5459 sigorski, d., sobczuk, p., osmola, m., kuć, k., walerzak, a., wilk, m., ciszewski, t., kopeć, s., hryń, k., rutkowski, p., stec, r., szczylik, c., & bodnar, l. (2020). impact of covid-19 on anxiety levels among patients with cancer actively treated with systemic therapy. esmo open, 5(5), e000970. https://doi.org/10.1136/esmoopen-2020000970 skapinakis, p. (2014). hospital anxiety and depression scale (hads). encyclopedia of quality of life and well-being research, 2930-2933. https://doi.org/10.1007/978-94-007-07535_1315 skevington, s., lotfy, m., & o'connell, k. (2004). the world health organization's whoqol-bref quality of life assessment: psychometric properties and results of the international field trial. a report from the whoqol group. quality of life research, 13(2), 299-310. https://doi.org/10.1023/b:qure.000001848 6.91360.00 study quality assessment tools. (2022, march 14). national heart, lung, and blood institute. https://www.nhlbi.nih.gov/healthtopics/study-quality-assessment-tools sutcuoglu, o., yazici, o., ozet, a., & ozdemir, n. (2020). harmful consequences of covid-19 fear in patients with cancer. bmj supportive & palliative care, bmjspcare-2020-002628. https://doi.org/10.1136/bmjspcare-2020002628 swainston, j., chapman, b., grunfeld, e. a., & derakshan, n. (2020). covid-19 lockdown and its adverse impact on psychological health in breast cancer. frontiers in psychology, 11. https://doi.org/10.3389/fpsyg.2020.02033 van de poll-franse, l. v., de rooij, b. h., horevoorts, n. j., may, a. m., vink, g. r., koopman, m., van laarhoven, h. w., besselink, m. g., oerlemans, s., husson, o., beijer, s., ezendam, n. p., raijmakers, n. j., wollersheim, b. m., hoedjes, m., siesling, s., van eenbergen, m. c., & mols, f. (2021). perceived care and well-being of patients with cancer and matched norm participants in the covid-19 crisis. jama oncology, 7(2), 279. https://doi.org/10.1001/jamaoncol.2020.60 93 van gorp, m., maurice‐stam, h., teunissen, l. c., van de peppel – van der meer, w., huussen, m., schouten‐van meeteren, a. y., & grootenhuis, m. a. (2020). no increase in psychosocial stress of dutch children with cancer and their caregivers during the first months of the covid‐19 pandemic. pediatric blood & cancer, 68(2). https://doi.org/10.1002/pbc.28827 vanni, g., materazzo, m., pellicciaro, m., ingallinella, s., rho, m., santori, f., cotesta, m., caspi, j., makarova, a., pistolese, c. a., & buonomo, o. c. (2020). breast cancer and covid-19: the effect of fear on patients' decision-making process. in vivo, 34(3 suppl), 1651-1659. https://doi.org/10.21873/invivo.11957 wang, y., duan, z., ma, z., mao, y., li, x., wilson, a., qin, h., ou, j., peng, k., zhou, f., li, c., liu, z., & chen, r. (2020). epidemiology of mental health problems among patients with cancer during covid-19 pandemic. translational psychiatry, 10(1). https://doi.org/10.1038/s41398-020-00950y yan, f., rauscher, e., hollinger, a., caputo, m. a., ready, j., fakhry, c., nathan, c. o., leonardis, c., yearout, d., tsue, t. t., day, t. a., & moore, m. g. (2020). the role of head and neck cancer advocacy organizations during the covid ‐19 pandemic. head & neck, 42(7), 1526-1532. https://doi.org/10.1002/hed.26287 yang, g., xiao, c., li, s., & yang, n. (2020). the effect and mechanism of adverse childhood experience on suicide ideation in young cancer patients during coronavirus disease 2019 (covid-19) pandemic. risk https://doi.org/10.3389/fonc.2020.01270 https://doi.org/10.1002/pon.5459 https://doi.org/10.1136/esmoopen-2020-000970 https://doi.org/10.1136/esmoopen-2020-000970 https://doi.org/10.1007/978-94-007-0753-5_1315 https://doi.org/10.1007/978-94-007-0753-5_1315 https://doi.org/10.1023/b:qure.0000018486.91360.00 https://doi.org/10.1023/b:qure.0000018486.91360.00 https://www.nhlbi.nih.gov/health-topics/study-quality-assessment-tools https://www.nhlbi.nih.gov/health-topics/study-quality-assessment-tools https://doi.org/10.1136/bmjspcare-2020-002628 https://doi.org/10.1136/bmjspcare-2020-002628 https://doi.org/10.3389/fpsyg.2020.02033 https://doi.org/10.1001/jamaoncol.2020.6093 https://doi.org/10.1001/jamaoncol.2020.6093 https://doi.org/10.1002/pbc.28827 https://doi.org/10.21873/invivo.11957 https://doi.org/10.1038/s41398-020-00950-y https://doi.org/10.1038/s41398-020-00950-y https://doi.org/10.1002/hed.26287 ihtp, 2(1), 51-66, 2022 cc by-nc-nd 4.0 issn 2563-9269 64 management and healthcare policy, 13, 1293-1300. https://doi.org/10.2147/rmhp.s266269 yang, s., dong, d., gu, h., gale, r. p., ma, j., & huang, x. (2020). impact of stopping therapy during the sars-cov-2 pandemic in persons with lymphoma. journal of cancer research and clinical oncology, 147(5), 1469-1479. https://doi.org/10.1007/s00432-020-034260 zou, z., hu, j., & mccoy, t. p. (2014). quality of life among women with breast cancer living in wuhan, china. international journal of nursing sciences, 1(1), 79-88. https://doi.org/10.1016/j.ijnss.2014.02.021 https://doi.org/10.2147/rmhp.s266269 https://doi.org/10.1007/s00432-020-03426-0 https://doi.org/10.1007/s00432-020-03426-0 https://doi.org/10.1016/j.ijnss.2014.02.021 ihtp, 2(1), 51-66, 2022 cc by-nc-nd 4.0 issn 2563-9269 65 table 1. search string truncated keywords, booleans operands search no keyword combination and filters #1 search: ((quality of life [title/abstract]) or (health status indicator[title/abstract])) or (health outcomes[title/abstract]) #2 search: ((anxiety [title/abstract]) or (depression [title/abstract])) or (distress[title/abstract]) #3 search: ((psychology*[title/abstract])) or (mental*[title/abstract]) #4 search: ((((cancer*[title/abstract]) or (tumor [title/abstract])) or (neoplasm [title/abstract])) or (carcinoma*[ title/abstract])) or (malignan*[title/abstract]) #5 search: ((((covid 19[title/abstract]) or (coronavirus [title/abstract])) or (sars cov 2[title/abstract]))) or (novel corona virus [title/abstract]) #6 #1 and #4 and #5 #7 #2 and #4 and #5 #8 #3 and #4 and #5 (study identification was conducted until 06/02/2021) ihtp, 2(1), 51-66, 2022 cc by-nc-nd 4.0 issn 2563-9269 66 figure 1. prisma 2009 study identification and select identification of new studies via databases and registers records identified from: (k=612) data bases: [k=341 (pubmed: 110, google scholar: 48, cinahl: 57, who covid 19 global research data base:126)] registers: [k=271 (cochrane covid 19 study register)] records screened: (k=99) reports sought for retrieval: (k=55) reports assessed for eligibility: (k=35) new studies included in review: (k=27) records removed before screening: duplicate records: (k=513) records excluded: (k=44) repots not retrieved: (k=20) reports excluded(k=11) instrument validation study/ study that do not comply with objectives of the systematic review: 7 absence of clear results: 1 pre-print: 2 poor quality: 1 identification of new studies via other methods records identified from citation searching: (k=76) reports sought for retrieval: (k=52) reports assessed for eligibility: (k=5) reports not retrieved: (k=47) reports excluded: (k=2) absence of clear methodology: 1 interventional study:1 id en tif ic at io n sc re en in g in cl ud ed issn 2563-9269 125 ‘giving and giving back’ at the end-of-life: reciprocal investments between caregivers and residents in the swiss nursing home context gabriela rauber1, eva soom ammann2, corina salis gross,3 1institute of social anthropology, university of bern; 2bern university of applied sciences, department of health professions, & institute of social anthropology, university of bern; 3swiss research institute for public health and addiction, & institute of social anthropology, university of bern corresponding author: g. rauber (gabriela.rauber@anthro.unibe.ch) abstract the present article is based on an ethnographic research project exploring the constitution and reproduction of exchange relationships between residents and caregivers in swiss nursing homes and elaborates on their significance within end-of-life trajectories. the results show that despite limited personnel, and time and cost constraints in oldage long-term care homes, exchange relationships are significant both in daily interactions and in the context of acute dying. residents as well as caregivers invest in relationships that build on an informal ‘giving and giving back’. invested goods or services in this exchange are manifold and often immaterial. the main informal investments are: 1) permitting affection and emotional involvement 2) sharing personal information, and 3) offering extra-time. scant research exists on the reciprocal exchange in care relationships from a theoretical perspective, a gap this study sought to fill. this paper employs anthropological exchange theory to demonstrate how the exchange of these immaterial goods establishes an informal dimension of care that may influence end-of-life practices in the nursing home. keywords informal relationships, care relationship, end-of-life, ‘doing death’, dying in institutions, nursing home funding source this work was supported by the swiss national science foundation (nrp 67 “end of life”, see www.nrp67.ch) under grant number 406740_139365/1. background 1. informal investments at the threshold of death the article is based on a research project entitled ‘doing death and doing diversity in swiss nursing homes’, which aims at understanding how nursing homes in switzerland deal with their increasingly diversified population of residents and staff while striving to provide an individualized dying for every resident (soom ammann, salis gross, & rauber, 2017; soom ammann, rauber, & salis gross 2019 ). referring to the perspective of symbolic interactionism on dying in institutions (sudnow, 1967; glaser & strauss, 1968) and more recent studies in this tradition (salis gross, 2001; dresske, 2005;), the ihtp, 1(1), 125-138, spring 2021 cc by-nc-nd 4.0 project considers death and dying as the product of interactions between different actors involved. in this sense, staff members, residents and relatives are all co-constructing the dying process together – i.e., they are ‘doing death’. in doing so, ‘doing death’ not only refers to the phase of acute dying, but includes the overall process starting with the resident’s admission to the nursing home, which, after a period of weeks, months or years, is followed by a phase of acute dying and is ultimately terminated by the removal from the nursing home post-mortem. while conflicting notions of an individual ‘good death’, and issues of diversity issn 2563-9269 126 in institutional ‘doing death’ are discussed elsewhere (ammann et al., 2017; soom ammann et al., 2019) the present paper addresses ‘doing death’ from the perspective of significant informal exchanges within care relationships at the end-of-life. as a general trend, palliative care policies postulate that patients at their end-of-life should have access to highly individualized care aiming at a self-determined dying in dignity. organizations such as the world health organization state that palliative care must be improved by guaranteeing equal access to every member of society and providing care by wellqualified staff (connor & sepulveda bermedo, 2014). current conceptualizations of palliative care are no longer limited to patients in specialized units and with malignant diseases, but also includes patients with non-malignant chronic diseases who are cared for in long-term care settings such as nursing homes. however, the aspect that ‘good’ palliative care is not only achieved by promoting widespread professionalization and accessibility, but also by being attentive to the social dimension of end-of-life care, has not yet received sufficient critical attention. despite professionals’ attempts to take its importance into account in their daily practice, there is a gap in explanations of how professional practice is influenced by the social dimension of care. in particular, there is very little research on informality and informal relationship parts between caregivers and persons being cared for. by exploring concrete investments in care relationships in this paper, we propose a novel theoretical and methodological approach inspired by social anthropology to understand informality in care. in doing so, we hope to inspire end-of-life care discourses and research. furthermore, as a theoretical lens, anthropological exchange theory may enrich institutional long-term care – a social field of exchange that, to our knowledge, has not yet been studied. to understand the particular significance of informality in care relationships, the model of (non)liquidating transactions elaborated by social anthropologist znoj (1995) is used as sensitizing concept. znoj distinguishes a mode of liquidating transaction between actors who buy and sell quid pro quo goods and/or services in a market-like situation from its counterpart, a non-liquidating transaction. here, in the absence of monetary exchange, actors engage in a reciprocal circle of investing goods and/or services and thereby build long-lasting informal ihtp, 1(1), 125-138, spring 2021 cc by-nc-nd 4.0 relationships. inspired by znoj’s theoretical perspective, this paper discusses the ways and means (investments) by which, informal relationship parts are established, maintained and made sense of at the end-of-life within in institutional long-term care settings. we use the term relationship parts to refer to the fact that care relationships are multifaceted, containing formally defined professional and individually established informal parts. drawing on our own empirical data, we have analysed investments which build the centre of informal relationship parts between caregivers and persons being cared for. we will illustrate how this informal ‘giving and giving back in turn’ may influence the institutional ‘doing death’ by guiding interactions between caregivers and care receivers in their everyday practice. we will also demonstrate how, in the context of acute dying, caregivers adapt investments and assign particular importance to the informal dimension. 2. theorizing informality by introducing reciprocity anthropology has a long tradition of exploring social and economic dimensions of exchange, paying special attention to the analysis of reciprocity, the mutual exchange of goods and services between individuals or groups of individuals. this reciprocal ‘giving and giving back’ is a focus of classic anthropological theory (malinowski, 1922; mauss, 1923; levi-strauss, 1969; sahlins, 1972;) and is considered as a prerequisite of the human need to establish and maintain social relationships. however, anthropological examinations of reciprocity in care relationships within institutions is rare. this is typically explored in the context of other disciplines, such as nursing sciences and feminist economics. znoj’s model of non-liquidation transactions (znoj 1995), rooted in exchange theory, adds much to this discussion and helps us to describe and understand the construction and reproduction of reciprocity relationships in any setting. feminist economists were among the first to call attention to what motivates people to engage in unpaid care work, suggesting the value of reciprocity – a mutual ‘giving and giving back’ over time – as a possible motivation for persons to engage in care (folbre, 1995). folbre recognized the importance of the ‘nurturing’ aspect of caring, as necessary to maintaining a reciprocal relationship and which, in the absence of payback, can decline. she notices that issn 2563-9269 127 affection and a sense of responsibility foster reciprocity (folbre 1995). the significance of affection in informal parts of relationships will be discussed later in this article. while folbre (1995) recognizes that a time parameter and a continuing investment is necessary to maintain a reciprocal relationship, gonzàlez-arnal and kilkey (2009) point to social embeddedness, and in so doing come close to anthropological or social exchange theory – as a prerequisite for informal relationships. they state that a rational individual makes decisions with reference to the net of social relationships and dependencies (gonzalez-amal & kilkey, 2009). jochimsen (2003) on the other hand, approaches reciprocity by analysing the nature of transactions, that is to say, by differentiating commodifiable from non-commodifiable parts in care relationships. the instrumental parts of care, such as administering medication, are commodifiable, while the communicative parts of care that make the patient feel cared-for in a social and emotional sense are noncommodifiable. recognizing that care relationships not only consist of contractual parts with a clear system of payback is a central element to our conception of care relationships and will, therefore, be further investigated with reference to our own data. nursing science is concerned with practices of care, the implementation of care standards and its monitoring, but also with research on caregiver and care receiver relationships. brown-wilson et al. (2009) understand reciprocity as a central element of the communal life in nursing homes and categorize factors that condition relationships between all possible actors in the field. the authors identify three types of relationships; pragmatic (focused on the practical aspects of caring); personal and responsive (focused on understanding the resident as an individual) and reciprocal (as a further development of personal relationships, considering every individual’s contributions to creating a sense of community in the nursing home) (brown-wilson et al., 2009). similarly, adams and sharp (2013) distinguish between different kinds of care relationships, but, in contrast to brown-wilson et al., (2009), choose a staff-centred approach. they differentiate ‘positive reciprocity’ (meaning to be kind to those who are kind to us) from its opposite, ‘negative reciprocity’ (referring to the refusal to cooperate, i.e., so-called ‘difficult patients’) from ‘generalized reciprocity’ (the expectation that good ihtp, 1(1), 125-138, spring 2021 cc by-nc-nd 4.0 care given will be paid back to them later by other actors). the latter alludes to a transcending component, the notion that help provided will be returned later by other members of society who accept reciprocity as a social norm. this line of argument is close to classical exchange theory in anthropology and will be further investigated in this article. as a last category, adams and sharp develop the term ‘professional reciprocity’ and position it close to ‘positive reciprocity’ but with a special purpose: it is actively promoted by paid care staff for the purpose of therapeutic benefits for the residents (adams & sharp, 2013, p.11). this conception of ‘professional reciprocity’ differs from the informal parts in care relationships we are interested in because, according to adams and sharp (2013), it is the result of reflection, valorisation and active instigation to benefit from reduced disturbances in the everyday-care-routine. from our perspective, adams and sharp’s (2013) ‘professional reciprocity’ might be positioned at the threshold of liquidating and non-liquidating transactions. informal relationships emerge in the context of subjective and situational motivations between individuals who voluntarily start to exchange non-liquidating transactions. while not specifically focusing on care, anthropology has a long tradition of exploring social and economic dimensions of exchange, paying special attention to the analysis of mutual exchange of goods and services between individuals, families or clans. ever since malinowski (1922) visited the trobriand islands and described different forms of exchange between family clans (pure gift as an altruistic form without expectations for reciprocation and barter as self-oriented and profit-minded form, (malinowski, 1922)), anthropologists have continued to consider reciprocal relationships as a core principle of social structure in communities (mauss, 1923; levi-strauss, 1969; sahlins, 1972; gouldner, 1973). in classical theories, which have their roots in colonial anthropology, exchange is regarded as a universal code of relationship building and regulation, most prominently found within kin groups (e.g., matrimonial exchange, levi-strauss, 1969). exchange relationships are conceived as ongoing circles of transferring goods and services between actors or groups of actors who accept reciprocity as a social norm. this norm obligates them to reciprocate a gift previously received in order to uphold durable social bonds. while classical anthropological exchange issn 2563-9269 128 theories tend to idealize concepts such as gift exchange and reciprocity as a purely altruistic mode of transaction in small scale communities, more recent theorists refer to models which abandon these idealistic conceptions in favour of a more critical approach, including individuals’ economic considerations. sociologist pierre bourdieu, with his distinction of different capitals (economic, social, cultural, and symbolic), deconstructed the gift as being purely self-oriented and motivated by the individuals’ search for accumulating capitals (bourdieu, 1997). other theorists, such as znoj (1995) who further developed anthropological exchange theory, avoided evaluating the motivations behind exchange and focused on describing types of exchange and discerning the associated goods and services. little exchange theory research has been done in the context of nursing home care. a few ethnographic studies have been done which consider care relationships by analysing residents’ and caregivers’ experiences of dying in nursing home and hospice contexts (salis gross 2001; kayser-jones, 2002; dresske, 2005;). however, virtually no studies explicitly focus on informal aspects in care relationships in the nursing home or for end-of-life or acute dying situations. as an exception, ann russ (2005) presents an ethnographic study of reciprocity relationships between caregivers and aids patients in a us hospice. summarizing how caregivers understand and practice reciprocity at the end-of-life of their patients, she explains: because patients were believed able to exert some control over the moment of death, waiting ostensibly until they were prepared and ready, caregivers would ‘smooth the way’ for patients in the final stages, telling them ‘it’s okay to let go.’ access to these moments was viewed as a fundamental privilege […]. [caregivers] gave the final gift of death. (russ, 2005, p. 144-145) arguing that caregivers interpret their participation in someone’s death as a ‘gift’, is not a thesis we can confirm from our own set of data and must be considered within the special context of hospice ideals and discourses. nevertheless, russ (2005) attentively describes how caregivers interpret reciprocity relationships with their patients. the privilege of sharing somebody’s death (the ‘gift’) is thought of as being compensated by first enabling the ihtp, 1(1), 125-138, spring 2021 cc by-nc-nd 4.0 patient a ‘good death’ and then by preserving the deceased’s memory or by mourning his/her death. describing the goods or services transferred, she gives a vivid example here of what non-liquidating ‘giving and giving back’ in care relationships can look like. znoj’s (1995) model of transacting goods and services distinguishes two modes of transactions: the liquidating and the non-liquidating mode. the first mode refers to two (or more) actors who approach each other in a short-term relationship to exchange a good or service (e.g. seller and client in a store). the service or good provided is settled by a clearly defined payment, so that the partners are free of any further obligation to reciprocate or ‘give something back’ in the future and will not engage in a social relationship either. liquidating transactions typically structure market-guided societies with their manifold possibilities to purchase or offer items either virtually or in face-to-face interactions. znoj’s (1995) understanding of liquidating transactions can be further enhanced through gregory’s description of commodity, which states that ‘[c]ommodity exchange is an exchange of alienable objects between people [in] a state of reciprocal independence.’ (gregory, 1982, p. 41). for znoj (1995), alienability is central to distinguishing the two modes of transactions. the second mode, non-liquidating transactions, focuses on reciprocity, which in znoj’s definition is the product of exchange practices between social actors (1995, p. 124). non-liquidating transactions also involve two or more partners who exchange goods or services. here, however, transactions are based on an informal ‘giving and giving back in turn’, which means that a good or service received is not returned immediately, nor is the form of reciprocation clearly defined. instead, the transaction leaves a debt to reciprocate later in a vaguely outlined manner. in znoj’s terms, the non-liquidating transactions produce a ‘net of mutual obligation’ (znoj, 1995, p. 124). as a consequence, transactional partners establish and reproduce a social relationship between inalienable partners (znoj, 1995, p. 125), which centres on repeatedly exchanging goods and countergoods (e.g., informal work loan between neighbouring peasants). the degree of social integration is therefore a distinctive characteristic. while liquidating transactions do not ask for a community in which exchange should take place, nonliquidating transactions and the perpetuated informal issn 2563-9269 129 exchange of services and goods clearly lead to a social integration of the actors who establish and reproduce community (znoj, 1995, p. 124-125). from the very beginning, anthropologists have consistently shown a considerable interest not only in transactional partners and informal exchange practices, but also in the concrete goods and services transferred (e.g., the traditional ‘kula ring’ on the trobriand islands and its cyclic exchange of necklaces, malinowski, 1922). in peasant societies, exchange often consisted of agricultural goods, tools to process these goods or assistance in the form of loaned workforce (see znoj 1995). when considering the context of institutional care relationships and the fact that informal relationship parts also exist, what goods and services might be exchanged becomes central. several authors have mentioned such goods in their studies. however, often with a prior interest in the asymmetries within care relationships which is especially relevant when discussing the quality of care. transactional goods are mentioned as an example rather than an analytical concept or category. noteworthy is the most recent contribution to the subject by molterer et al. (2019). referring to mol (2008) they discern two different logics of care (professional and relational) and argue that ‘care is always a matter of tinkering with different, sometimes competing ‘goods’’ (molterer et al., 2019, p. 95) which in practice lead to a ‘practical ethics of care’ (molterer et al., 2019, p. 95). for our perspective, these examples are significant because they give a first impression of the ways and means by which actors engage in informal relationship parts in the care context. interestingly, when ‘goods’ are described in literature they often show similar characteristics. first, most investments described are immaterial instead of physical products, and second, they show that contributions made by the caregiver and those made by the care receiver may be of different form. while for caregivers, emotional involvement such as the desire to help frail persons (waerness, 1987) or strong feelings of attachment (himmelweit, 1999), compassion (meagher, 2006), or the deliberate investment of extra-time (davies, 2001) is meaningful. contributions by the care receivers include cooperation with the caregiver’s requests (meagher, 2006), taking over little chores in order to disburden the caregiver (bowers, fibich, & jacobson, ihtp, 1(1), 125-138, spring 2021 cc by-nc-nd 4.0 2001) and sharing aspects of their past lives (bowers et al., 2001). as we can see from these examples from the studies above, caregivers and care receivers ‘give’ and ‘give back’ varying immaterial favours and, thereby, invest in a personal relationship. our paper aims at further developing these observations. by using znoj’s (1995) model and our own extended set of data, we explore the establishment and maintenance of everyday interactions in the nursing home context as fundamental elements of informality in care relationships. furthermore, focusing on dying trajectories, we also discuss the termination of informal care relationships. doing so, we aim at improving the understanding of the significance of informality in care relationships; the ‘giving’ and ‘giving back’ at the end of life. methods 3. exploring informality an open ethnographic study design following the classical, theory-generating principles of grounded theory (glaser & strauss 1967, 1968; small & gott, 2012;) was chosen to understand the particular relationships involved in practices of ‘doing death’. two swiss nursing homes were selected for a fieldwork phase with nine months of participant observation; the center burgallee and the brunnhof. both nursing homes are located in urban, german speaking areas of switzerland and accommodate up to 130 elderly residents. data collection included taking extended field notes to document observed informal interactions on a daily basis. in addition, open and semi-structured interviews were conducted with staff, residents, family members, and experts from outside the institution. the interviews were selectively audiotaped (if circumstances allowed for it) and transcribed. data gathering and data analysis was conducted iteratively and assisted by atlas.ti software. all data was gathered and edited in german. for the purpose of this article, selected sections were translated into english. in a process of constant comparison, data was contrasted and triangulated continuously both within the research team and outside (external experts/researchers). during their field stay, the researchers regularly participated in interand supervision meetings to reflect on their own position as a researcher. the study followed the ethical standards defined by the issn 2563-9269 130 swiss ethnological society. access to the nursing homes and approval of the study was granted by the nursing home managements. informed consent was obtained iteratively (process). prior to field entry, all participants were informed of the aim of the research by the management. during the field stay, participant consent to participate was re-affirmed by the researchers. to minimize disturbances caused by the research project, it was decided that only one researcher should be introduced per institution and that the nursing home management should select the ward for them. the first author was assigned to the center burgallee, which she entered by introducing herself as a member of the research team and by explaining that she would start doing research by working several weeks as a caring aid. after this first phase, the researcher started moving around more freely on the ward. striving for a previously planned change of perspective from caregiver to care receiver (which was made visible by no longer wearing the blue nursing gown), she started accompanying residents throughout their day, taking them out for a walk and conducting informal talks, also with residents whose radius was limited to their room or bed. in her field notes she describes her experiences associated with this role shift: for a week now, i have been spending whole days with particular residents. there was some confusion at the beginning (both mrs. huber and mr. ramo didn’t recognize me in my own clothing) but after making clear once more who i am, the residents willingly spent their time with me, as they stated. mrs. sager said that nurses are always in such a hurry and hardly come by in the afternoon. especially the hours between ‘midday rest’ and dinner, which residents describe as, ‘long’, ‘bland’ or ‘boring’. during the afternoon, there are only few staff members working (most work the morning shift and come back for dinner) and if neither therapy nor visits offer distraction, residents tend to be left to their own devices in the afternoon hours. (g. rauber) while more staff members are present in the morning shift when medical treatments and bodily care are generally executed, the afternoon shift is called ‘hüeti’. the term can best be translated as the ‘herding shift’ and it implies that few caregivers have to ‘herd’ or to look after many residents. when thinking about informal relationships, these ihtp, 1(1), 125-138, spring 2021 cc by-nc-nd 4.0 circumstances are noteworthy: the afternoon, being the time after morning routine and lunch time but before evening routine and dinner, would offer an occasion to invest in informality and personal relationships between caregiver and care receiver. however, most staff members are not present during the afternoon, and the few who are, are busy to meet with residents in need of more intensive care. it is thus the task of relatives or volunteers to spend the bland afternoon hours with residents. for the researcher, these circumstances offered an opportunity to explore informality by establishing individual relationships with residents and to talk about issues that needed more time and privacy. at the same time, sitting for hours at a bedside, the researcher experienced herself how long afternoon hours may become if possibilities for activities are limited. during the next phase of fieldwork, the actorcentred perspective was abandoned in favour of a case-centred one, shifting the focus of attention to concrete dying trajectories. whenever possible, the researcher then spent time in a dying resident’s room and with institutional actors responsible for dying persons. the fact that personal relationships with residents had been built previously proved to be an advantage in many cases, permitting the researcher to be present in this intimate situation without being ‘out of place’ with respect to the staff, the residents, and their family members. in total, eighteen dying trajectories could be observed. involvement ranged from little participation (e.g. visiting a dead body in the nursing home’s mortuary and conducting postmortem interviews with staff or family members), to intensive participant observation during the acute dying phase and after death (spending hours or days at the bedside of a dying resident, participating in special team meetings, observing and talking about care routine for the dying resident, assisting with the so called ‘comfort care’ which aimed at reducing pain, anxiety and unnecessary medical treatments, helping staff to prepare the dead body and taking part in the funeral). 4. dealing with ambiguity and informality observing everyday interactions allowed the researcher to address the question in detail of how informality emerges within care relationships in the nursing home. at a first glance, the relationships between caregivers and care receivers are primarily issn 2563-9269 131 structured by the nursing home organization, which is based on a clearly defined, formal system of contract and monetary account. as part of this organization, the degree of care and support an individual resident is in need of (nursing care level) is regularly evaluated, and care services are then provided by caregivers and paid for by the residents, their health insurance and the state (supplementary benefits). in accordance with this structure, there are institutional rules for professionals on how to address residents properly (e.g., addressing them formally by using family names instead of first names or holding a resident’s hand instead of caressing his/her cheek, (soom ammann et. al, 2019)) which are considered by professionals an appropriate balance of closeness and distance within the care relationship. however, after several weeks of experiencing and reflecting on the nursing home, the ambiguous nature of care relationships became more and more visible to the researcher. it became apparent that some residents and institutional caregivers selectively engage in informal relationships with each other. this first became obvious in everyday conversations: staff members, when among themselves, would often talk about their problems with some residents and their sympathy for others. similarly, residents, when alone with the researcher or when talking to each other, articulated their affection for or aversion towards certain staff members. it seemed that every person on the ward disposed of a certain knowledge on the nature of most care relationships. in this sense, everyone knew that mrs. huber liked nurse samantha and complimented her. then, after some more time in the field, this ambiguity also became observable in other forms of everyday interactions on the ward. for example, when adapting shift plans, staff members applied ad hoc strategies to omit or diffuse conflicting situations (e.g., by not assigning staff members to residents whom they did not get on with very well). so, the staff knew that nurse elisabeth had to be sent to mrs. santini if the resident with severe depression refused to get up in the morning. also, residents contributed to the ambiguous character of care relationships, for example when waiting to communicate a particular information or problem until a nurse was in charge with whom they felt familiar. to sum up, both groups of actors point to informality in care relationships. however, this occurred rather implicitly in everyday interactions without reflecting the fact that care relationships have an ambiguous character and without thinking of its significances for the institutional ‘doing death’. ihtp, 1(1), 125-138, spring 2021 cc by-nc-nd 4.0 observing dying trajectories more closely in the later stages of field research allowed the researcher to address informality under the circumstances of imminent dying. it became evident that, for caregivers, ‘doing death’ with ‘their’ residents led them to negotiate and rethink the pervasive time and financial pressures. in this sense, it could be observed that nurses voluntarily spent extra hours at the end of their shift if they wanted to stay with a resident with whom informal relationship parts had been built previously. it could therefore be argued that at the moment of being confronted with acute dying, the ambiguous character of care relationships intensified and became better observable. we will now demonstrate in detail how pre-existing informal relationship parts between staff members and dying residents lead to an increased investment of nonliquidating transactions. by analysing the goods and services that are invested, we will demonstrate the significance of informal relationship parts in the context of ‘doing death’. moreover, we will try to explain why such relationships are established in the context of the imminent threat of rupture caused by death. eventually we will see that permitting ambiguity in care relationships is an effective strategy for dealing with the rupture and making sense of it. it is thus a constitutional element of ‘doing death’ in the nursing home. 5. handling rupture there are remarkable differences between informal aspects in institutional care relationships and other, more traditional exchange relationships described in anthropology. kin groups or peasant communities are socially and economically rooted in the mutual ‘giving and giving back in turn’. informal exchange is essential for their existence. the loan of workforce or the exchange of material goods is used over generations to profit from a stable net of social relationships. in care relationships, the motivation to build informal bonds is less evident. care is primarily provided in a liquidating mode to a customer (resident) who pays for the service. with the resident/customer’s, death the service ends. thus, from this perspective, a care relationship is not supposed to influence end-of-life practices substantially because actors are thought of as being alienable. also, in institutional care, relationships do not persist over generations. relatives of a deceased resident are unlikely to engage in a future relationship issn 2563-9269 132 with the former caregivers of their father, mother, etc. (at least the authors have never made such observations). however, with informal relationship parts, a resident’s death requires caregivers to handle this rupture, cope with feelings such as loss and grief, and move on to build new care relationships with future residents. so, why do caregivers engage in informal relationship parts in a context where death is always certain, leaving them to cope with a ruptured exchange dynamic? nurse seraina, interviewed following the death of a resident, reflects on her motivations to engage in informal relationship parts while ‘doing death’: they have done their part for the family or even for the society, if you want – they have raised children, worked and paid taxes. i am the one to give them something back at the end, be there for them when their time has come to say goodbye. this is nothing but right. it’s part of what i think is meaningful in my job. (seraina, nursing aid at center burgallee) nurse seraina refers to a moral obligation to ‘give something back’ to members of the elder generation, and she also mentions a satisfaction associated with fulfilling this obligation. we could argue that ‘giving back’ in her view is not only a subjective emotional satisfaction but has the ability to transcend in a manner comparable to the context of small scale communities: a member of the previous generation has invested goods/services in favour of the community. seeing herself as a member of the next generation, who is morally obliged to return investments, she is ready to intensify informal relationship parts in the context of dying. this transcending notion of ‘giving and giving back’ is not necessarily rooted in altruistic motivations but refers to a notion of persisting intergenerational exchange over time, which will include her own end-of-life. this would mean that her investments are accompanied by a hope that other people will feel a similar urge to contribute to her own end-of-life care. we will now give deeper insight into empirical data and discuss three main categories of non-liquidating goods: permitting affection and emotional involvement, sharing personal information and offering extra time. as stated before, some of these goods have already been mentioned by other authors. however, their categorization and ihtp, 1(1), 125-138, spring 2021 cc by-nc-nd 4.0 valorisation as integral parts of ‘doing death’ is new and is thus intended to add to the existing literature. results permitting affection and emotional involvement the researcher collected a large amount of data that points to close emotional involvement in care relationships. small signs of affection sometimes get lost in day-to-day practice, however, interactions during acute dying phases and post-mortem interviews with staff members clearly bring to light the ways residents and staff members establish an informal relationship, as illustrated in mrs. huber’s case. suffering from an early-onset alzheimer dementia that progressed quickly, the resident roamed the corridors in her wheelchair, day after day, and constantly in search of a ‘person in white clothes’ who would hold her hand, take a chocolate she offered and drink an espresso with her. although challenging the daily routine on the ward (i.e. mrs. huber was a ‘time consuming resident’), her need for constant presence of staff members was met by keeping her nearby whenever possible. half a year later, mrs. huber retreated from the public space of the nursing home (corridors, dining room, tv corner) to the private sphere of her room, and shortly afterwards to her bed. losing physical strength and her intense need for company, she stayed in her bed without eating or speaking and died two weeks later. reflecting on the period of retreat before her death, nurse anna and nursing aid sina state: anna: we always took her with us. if she saw there was a person in a white nursing gown, she felt safe and relaxed. like that it happened all the time; she had a strong presence in our daily life. sina: when she was about to go [die], we suddenly did not have her with us anymore, did not get her daily hugs and caresses anymore. i really have to say, i felt a strong wish to go to her bed and hold her hand. when asked, whether she had the time to go to sit at her bedside, sina replied: well, i just made the time to go there because i felt a strong wish to do so. issn 2563-9269 133 the researcher tried to spend time at mrs. huber’s side during her last two weeks of life. doing so, revealed to her that many staff members tried to make frequent contact with the dying woman. they would enter her room noiselessly, hold her hand or say a few words with a soft voice, and at times shed some tears. having spent already several months in the field by that time, the researcher recognized the exceptionality of this particular ‘doing death’. the fact that so many staff members showed such an intensive emotional and time-consuming involvement in a dying trajectory was outstanding to all wards in the center burgallee. the case even became more remarkable because usually, especially if extra time consumption coincided with openly shown discontent on the ‘difficult’ resident’s side, the retreat to bed and loss of verbal communication tended to be perceived as ‘disburdening’ to the daily routine, and time shared at their bed side was reduced to the welldefined liquidating care services (e.g. repositioning, refreshing face and mouth, administering medication, making reports to the doctor). meeting nurse anna at lunch some days after mrs. huber’s death, the researcher asked her how she had experienced the resident’s dying in comparison to other dying trajectories and the nurse replied: well, the wish to be there depends on the situation. she [mrs. huber] always gave such a lot of herself. she suffered from dementia, but she could hug you and say ‘i don’t know where i am but i know you are kind.’ that touches your heart. it really hurt when she left, even if i was glad for her that she could go. what becomes clear here is that it is impossible to consider the moment of retreat and the process of dying without looking back at the earlier day-to-day interactions. by repeatedly expressing her affection for the caregivers and by articulating her need for constant physical and emotional closeness, mrs. huber, although severely impaired, would invest considerable non-liquidating goods that invited caregivers to reciprocate. this becomes obvious when considering that the caregiver explains her wish to be with the dying mrs. huber by referring to the reciprocal character of their relationship (‘she gave such a lot from herself’). interestingly, efforts to invest into the relationship with the resident were shown not only by a single nurse, but by the majority of staff members on the ward. it might be argued ihtp, 1(1), 125-138, spring 2021 cc by-nc-nd 4.0 that, over time, mrs. huber has transcended her nonliquidating investments (affection, compliments, caresses, and gratefulness for companionship) from single caregivers to all actors dressed in white nurses’ clothes, what could explain why visits at her bedside have been so exceptionally frequent in general. the informal relationship seems to have spread to all possible care relationships on the ward, evoking an emotional involvement that expressed itself in a strong wish to participate actively in her ‘doing death’. it can be argued that the strong emotional involvement of most staff members led to temporarily re-structuring the daily routine on the ward, permitting that a particular ‘doing death’ absorbs working time which would otherwise be occupied by care tasks for other residents. twenty-four hours before her death, mrs. huber was considered by staff members as ‘about to go’. signs that were explained to the researcher as being reliable indicators that death was imminent (jarring breathing, macerated skin, missing response to any kind of intervention) led the caregivers to adapt their practices of ‘doing death’ once more which included investing their off-work time. several nurses would stay on the ward after the end of their shift. two nurses even dropped by during their recreation time, with no other reason to come but ask how mrs. huber was and enter the resident’s room for a short visit. they were well aware that the resident was no longer able to actively ‘give something back’ from her side, but, facing the coming rupture of the relationship, they strove to ‘give’ as much as possible. what they ‘got back’ for their accumulated investments should again be considered from a transcending perspective, as anna’s words suggest. she is grateful that the person she felt strongly attached to ‘is able to go now’, which in her view signifies a relief from suffering. feeling reassured that everything has been done the ‘right way’ (which is subject to the caregiver’s personal interpretation) can be understood as a ‘gift back’ that leads to satisfaction and comfort. both are important not only to cope with the present rupture and loss, but also for the motivation to engage in future informal relationships with residents. sharing personal information the researcher quickly learned that some residents shared information about their private lives with some caregivers, but not with others. for issn 2563-9269 134 example, during the morning routine (a period of high activity on every ward, see also costello 2001), residents in relatively good health used the opportunity to chat vividly about their lives, while getting support in washing, grooming or being taken to breakfast. undergoing the same morning routine accompanied by another staff member, the same resident seemed to be rather ill-humoured or silent. as the researcher discovered bit by bit, the criteria by which personal information was shared with a caregiver was the construction of similar identities or experiences which led to personal appreciation and trust. spending an afternoon with mrs. rudolf, a 99-yearold woman, the researcher had a conversation with her about her relationships with staff members. she loved to talk about her childhood memories to nadja, a middle-aged nursing aid, she said. she could tell her about the cuckoo clock, a matter nobody else was interested in. born in germany, she had childhood memories of it, she said. during world war ii’s air raids, the grandmother would cradle her on her lap, rocking her gently in time with the clock’s tick tock. they had no basement to hide in and she was scared, she said. but she would never forget the feeling of comfort on her grandmother’s lap. nadja was the only one she could share that story with. “the young girls would laugh at me and the others don’t care.” occasions as described by mrs. rudolf are very frequent. residents demonstrate their willingness to give additional personal information to a certain staff member and thus open the opportunity to engage in an informal relationship. staff members react by keeping the conversations concentrated on the residents’ matters that are relevant for providing adequate care. or, as nadja did, they can respond by showing interest in the story and by taking up the thread and give some personal information themselves. exchanging personal information between staff members and residents can be a powerful means to establish informal relationships because it can be considered as an attempt to transcend positions in the asymmetry of a care relationship. it could be argued that the resident steps aside from his/her role as a frail care receiver. similarly, the staff member abandons his/her role as a professional caregiver. both then become transactional partners who equally engage in an informal relationship based on the exchange which then co-exists with the formal care relationship. ihtp, 1(1), 125-138, spring 2021 cc by-nc-nd 4.0 when interviewed by the researcher about her relationship with mrs. rudolf, nadja started talking about the clock herself. she had an important memory associated with a german clock on her own, she explained. “that’s our story”, nadja stated to the researcher. “no one knows. it is almost like a little secret […] sometimes it’s the little things that make the difference.” four and a half months later, mrs. rudolf entered the acute dying phase. nadja was eager to be put in charge of mrs. rudolf. one morning, after having ‘refreshed’ the resident, the nurse sat down on the edge of the bed and put her arms around the petite woman. then she started humming and cradling her very gently to the tick tock of the clock in the otherwise very silent room. becoming aware of the intimate character of the scene, the researcher left the room. mrs. rudolf died the next day and nadja prepared the body for the mortician. during the whole fieldwork, the researcher had never seen a staff member sitting on a resident’s bed, and it is likely that some other team colleagues would have termed nadja’s behaviour as ‘unprofessional’. as observed, staff members usually sit or stand at the bedside when they hold the hand of a dying resident. the bed is the most private realm of a care receiver in the semi-private sphere of the nursing home. sitting on it and embracing a dying resident might be considered as an act of transgressing the border of intimacy. mrs. rudolf could not be asked whether she felt comfortable with this intimate physical contact. however, blurring the boundaries of privacy here should be seen in the context of a well-established informal relationship and the staff member’s attempt to give comfort in a possibly fearful situation (dying) as her contribution to a personalized ‘good death’. the two individuals have shared intimate private information, and, while referring to common experiences, built a base of mutual confidence. sharing personal information or ‘secrets’ can thus be seen as strongly influencing practices of ‘doing death’ well in mrs. rudolf’s case. ‘doing death’ without referring to the clock story would not have been a ‘good death’ in nadja’s view. therefore, a ‘good death’ (whatever it is considered to contain in the subjective case) can be enhanced by non-liquidating transactions in informal relationship parts between caregiver and care receiver. issn 2563-9269 135 offering extra time having entered the field as a nursing aid herself, the first author quickly learned that caregivers constantly need to manage time and cost pressure in their everyday routine. especially when staff members on sick leave were not replaced or when a considerable number of residents were in bad health condition, the workload was heavy. several times, the researcher experienced on her own how difficult it was to spend an adequate amount of time with a resident when six more were waiting for help. it was not surprising then that many staff members reported in interviews that often only ‘basic’ care services could be provided, meaning the help to get up, to get washed and dressed and to eat, as well as administering the medications. while these daily care services were always provided without exception, time for the social relationship was scarce (e.g. chat with a resident about everyday concerns). it seemed that residents were left in a position of having to ignore their social and/or emotional needs (at least when no family or friend was available) and be content with what they received in the hectic nursing home routine. however, particularly in the context of acute dying, time pressures became negotiable depending on the informal relationship parts involved. the following case of mrs. adani illustrates how time resources may be mobilized when strong informal parts in the care relationship are at stake while ‘doing death’. time is, therefore, an important transactional good used to prepare to and cope with the coming rupture caused by a resident’s death. mrs. adani, 71, entered the nursing home after a cerebral tumour had rendered her incapable of walking and attending to her personal hygiene. ramesha, as she preferred to be called by her first name, was of tamil origin and had migrated to switzerland together with her husband during the civil war in sri lanka. on ward beta, she was known as a charming, grateful and humble person who never made demands. ramesha’s daily care proved to be little complicated, and the researcher was willing to help her with her morning routine whenever help was asked for (which happened several times a week). doing so, the researcher discovered that apart from her, two staff members also spent a considerable amount of time with the resident including devika, a registered nurse with indian origins, and soorat, a nursing aid, born in sri lanka. both staff members would often spend their break time with the resident ihtp, 1(1), 125-138, spring 2021 cc by-nc-nd 4.0 or drink a tea with her after the end of their shift. it was part of the daily nursing routine that one of the two staff members helped her with her morning routine (when the researcher wasn’t entrusted with this task). it was a special gift to have them on the ward, ramesha said, it was such a pleasure to chat with them in her mother tongue. soorat, who lived close to the nursing home, would sometimes even come to visit her on sundays, the resident added. ramesha died rather unexpectedly. all of a sudden, she suffered from heavy pain and breathing difficulties. she was given high doses of opiates; nevertheless, her pain was difficult to control. the day she died, soorat was working the early shift. it was painful for her to see the resident in such a terrible condition, she said. devika had her day off but suddenly appeared on the ward in civil clothes, tears in her eyes. soorat had called her in, she explained to the researcher. when ramesha died, her husband requested that his wife be dressed in her wedding sari. long after her shift had ended, soorat was willing to prepare the dead body together with devika. charlotte, who was working on the day, later told the researcher that she was glad that the two colleagues helped to dress ramesha in the sari. “they are the only ones who know how to wrap somebody in ten meters of silk”. one week later, the researcher participated in the funeral ceremony. she was accompanied by devika and soorat, both openly grieving. in an interview they later stated that they both had deliberately ‘sacrificed’ their day off to come to the funeral without calculating it as work time. a gesture that in devika’s words was ‘natural’ to give a last farewell and also to find comfort herself. as has been evidenced, actors engage in informal relationship parts at various levels of intensity while dealing with the threat of rupture. however, the investments described such as extra time or affection are not rigid. they are subject to negotiation and interpretation depending on the varying circumstances and meanings ascribed by actors. this becomes most evident when considering many caregivers’ efforts to intensify investments during the last days and hours of a resident’s life. 6. no second chance or ‘doing everything right’ to understand the practices of intensifying investments when death becomes foreseeable within days or hours, we need to consider death from a issn 2563-9269 136 different perspective as a unique event in every (human) beings’ existence, and caregivers’ ambition to ‘do everything right’ must be seen with regard to this uniqueness. staff members who have maintained strong informal relationship parts with a resident are well aware that there will be no second chance to ‘make it better’. therefore, they lay special importance on ‘making everything right’ to enable the resident a ‘good death’, whatever ‘right’ and ‘good’ may include for the actors involved. already within the first two weeks of fieldwork, the researcher was confronted with a dying trajectory that illustrated the significance of ‘doing everything right’ while ‘doing death’. the registered nurse ashanti approached her; visibly irritated, stating that mrs. albert had just died. having seen the resident just one hour before, the researcher shared her astonishment. she just seemed a little tired, ashanti said, and she wanted to rest. ten minutes later, the nurse found her lifeless on her bed. ashanti was deeply moved, she said. the woman had died alone and very quickly. nobody had anticipated that she would die so soon, as she explained. by that time, the researcher did not fully understand why the nurse was so irritated about the resident’s sudden death. mrs. albert was 89 years old, and she died without having to lie in bed for days; aspects that staff members often tend to interpret as elements of a ‘good death’ (i.e. without pain or being confined to bed for a long period). weeks later, however, ashanti’s agitation became more comprehensible to the researcher while talking to charlotte. mrs. albert’s death occurred unprepared, leaving the nurse no opportunity for actively ‘doing death the right way’, or as charlotte puts it: there is no second chance to make it better. so, you try to do everything as good as you can. i don’t care about working hours in that moment. instead, i hope that they can go within the next hours so that i can stay with them until the last breath […] and say a last goodbye. charlotte explains what ‘doing everything right’ can mean. she expresses a strong wish to accompany the resident until the ‘very end’ of the dying trajectory, and the fact that she is possibly working extra hours to achieve that goal doesn’t matter to her. however, we would argue that quite the contrary is the case: deliberately dedicating extra time or work ihtp, 1(1), 125-138, spring 2021 cc by-nc-nd 4.0 here is indeed an essential part of ‘doing everything right’ while ‘doing death’ and this is what ashanti missed when confronted with the death of mrs. albert. the sudden death did not give her the chance to prepare and make sense of the coming end of the relationship. the opportunity to make sense of rupture is integral to caregivers’ present and future involvement in informal relationship parts with other residents. discussion and conclusion 7. making sense of the threat of rupture using znoj’s (1995) exchange theoretical model of (non)-liquidating transactions as a sensitizing concept we have shown an innovative way to understand the particular significance of informality in care relationships in the nursing home. we have used selected ‘investments’ to understand the ways and means by which informal relationship parts are established, maintained and made sense of in the context of everyday practice and we have drawn attention to acute dying trajectories to demonstrate how caregivers tend to assign particular importance to the informal dimension when the threat of rupture by death is imminent. as demonstrated, if the circumstances of a dying trajectory do not permit enough time and space to adjust investments so that they enable what the caregivers in question consider to be a ‘good death’ it is likely that they will feel more challenged to accept a resident’s death and think back on it remorsefully. what is missing in this situation is not only the informal investment of ‘time’ for a dying resident, but in the broader context it is the opportunity to make sense of the ever-present threat of rupture in the nursing home. that is to say, caregivers who engage in informal relationship parts – and in our research these were the majority of staff members observed – are challenged to ‘do death’ in a way that they can make sense of within the cycle of establishing, maintaining and terminating relationships. making sense of rupture is then part of the process of actively preparing to let go by intensifying investments of reciprocity. shared memories with the resident and reflections on what made their relationship personally meaningful thereby often serve as a reference to decide in what particular way to adapt investments (e.g., increasing presence during shift or making extra appearances at night). caregivers who issn 2563-9269 137 go through this process often express that they are ‘relieved’ or ‘grateful’ after a resident’s death and that they find comfort knowing that everything was ‘done right’ for the person. they may also be more likely to be deliberately involved in future informal care relationships than caregivers who experience repeated unprepared ruptures. however, with reference to our data, we argue that the majority of caregivers repeatedly engage to some extent in informal relationships with residents, despite the awareness that they will have to cope with loss again. in practice, trying to omit close personal bonds to protect oneself from grief doesn’t seem to be a widely used strategy. from an anthropological perspective this is less surprising than it might appear. establishing and maintaining social relationships is a basic human need and making sense of it is a constant in human activity. this is not only true for close social bonds with family and friends, but also for relationships which are framed by a formally defined institutional structure such as the nursing home. while nursing homes cannot structurally implement and control informal relationship parts, institutions can valorise them as an essential part of daily care practice which influences end-of-life situations and practices. drawing a detailed picture of informal parts in caregiver/care receiver relationships in nursing homes is important, adding new insights into the ways institutional long-term care relationships are structured and interpreted by the individuals involved. references adams, v., & sharp, r. (2013). reciprocity in caring labor: nurses’ work in residential aged care in australia. feminist economics,19(2), 100121. doi:10.1080/13545701.2013.767982 bourdieu, m. p. (1997). some additional notes on the gift. in the logic of the gift: toward an ethic of generosity (pp. 131-141). new york: routledge. bowers, b. j., fibich, b., & jacobson, n. (2001). careas-service, care-as-relating, care-ascomfort. the gerontologist,41(4), 539-545. doi:10.1093/geront/41.4.539. brown-wilson, c. r., davies, s., & nolan, m. (2009). developing personal relationships in care homes: realising the contributions of staff, residents and family members. ageing and ihtp, 1(1), 125-138, spring 2021 cc by-nc-nd 4.0 society,29(7), 1041-1063. doi:10.1017/s0144686x0900840x. connor, s. r., & sepulveda bermedo, m. c. (2014). global atlas of palliative care at the end of life. london: worldwide palliative care alliance. costello, j. (2001). nursing older dying patients: findings from an ethnographic study of death and dying in elderly care wards. journal of advanced nursing,35(1), 59-68. doi:10.1046/j.1365-2648.2001. 01822.x davies, s. (2001). wanting what’s best for them: relatives experiences of nursing home entry: a constructivist inquiry (doctoral dissertation, university of sheffield). sheffield: school of nursing and midwifery. dresske, s. (2005). sterben im hospiz: der alltag in einer alternativen pflegeeinrichtung. frankfurt a.m: campus. folbre, n. (1995). "holding hands at midnight": the paradox of caring labor. feminist economics,1(1), 73-92. doi:10.1080/714042215. glaser, b. g., & strauss, a. l. (1967). the discovery of grounded theory. chicago: aldine. glaser, b. g., & strauss, a. l. (1968). time for dying. london: routledge. gonzález-arnal, s., & kilkey, m. (2009). contextualizing rationality: mature student carers and higher education in england. feminist economics,15(1), 85-111. doi:10.1080/13545700802528323. gouldner, a.w. (1973) for sociology: renewal and critique in sociology today. london: allen lane. gregory, c.a. (1982). gifts and commodities. london: hau. himmelweit, s. (1999). caring labor. the annals of the american academy of political and social science, 561, 27-38. retrieved february 15, 2021, from http://www.jstor.org/stable/1049279 jochimsen, m. a. (2003). integrating vulnerability: on the impact of caring on economic theorizing. in towards a feminist philosophy of economics (pp. 231-246). london: routledge. kayser-jones, j. (2002). the experience of dying: an ethnographic nursing home study. the gerontologist,42(3), 11–19. https://doi.org/10.1093/geront/42.suppl_3. 11 ihtp, 1(1), 125-138, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 138 lévi-strauss, c. (1969). the elementary structure of kinship. 2nd ed. boston: beacon press. malinowski, b. (1922). argonauts of the western pacific: an account of native enterprise and adventure in the archipelagos of melanesian new guinea. london: routledge and kegan paul. mauss, m. (1923). essai sur le don forme et raison de l'échange dans les sociétés archaïques. l’année sociologique (1896/18971924/1925), 1, 30-186. retrieved february 15, 2021, from http://www.jstor.org/stable/27883721 meagher, g. (2006). what can we expect from paid carers? politics & society,34(1), 33-54. doi:10.1177/0032329205284755. mol, a. (2008) the logic of care: health and the problem of patient choice. new york: routledge. molterer, k., hoyer, p., & steyaert, c. (2019). a practical ethics of care: tinkering with different ‘goods’ in residential nursing homes. journal of business ethics,165(1), 95-111. doi:10.1007/s10551-018-04099-z russ, a. j. (2005). loves labor paid for: gift and commodity at the threshold of death. cultural anthropology, 20(1), 128-155. doi:10.1525/can.2005.20.1.128. sahlins, m. (1972). stone age economics. chicago: aldine. salis gross, c. (2001). der ansteckende tod: eine ethnologische studie zum sterben im altersheim. frankfurt a.m: campus. small, n., & gott, m. (2012). the contemporary relevance of glaser and strauss. mortality,17(4), 355-377. doi:10.1080/13576275.2012.730683 soom ammann, e., salis gross, c., & rauber, g. (2017). the art of enduring contradictory goals: challenges in the institutional coconstruction of a ‘good death’. final journeys,24-38. doi:10.4324/9781315180137-3. soom ammann, e., rauber, g., & salis gross, c. (2019). ‘doing death’ the mediterranean way: end-of-life in a segregated nursing home. mortality,24(3), 271-289. doi: 10.1080/13576275.2018.1483906 sudnow, d. (1967). passing on: the social organization of dying. englewood cliffs: prentice-hall. waerness, k. (1987). on the rationality of caring. in women and the state: the shifting boundaries of public and private (pp. 207234). london: routledge. znoj, h. (1995). tausch und geld in zentralsumatra: zur kritik des schuldbegriffs in der wirtschaftsethnologie. berner sumatrastudien. berlin: reimer. 1 ihtp, 1(1), 1-16, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 an application of the adapt-itt model to an evidence-based behavioral hiv prevention intervention for men who have sex with men in ghana gamji m’rabiu abubakari1, deanne turner2, laron e. nelson1-4, apondi judith odhiambo5, francis boakye6, adom manu7, kwasi torpey7, leo wilton8,9 1center for interdisciplinary research on aids, school of public health/medicine, new haven, ct, usa; 2yale university school of nursing, new haven, ct, usa; 3yale institute of global health, yale university, new haven, ct, usa; 4map center for urban health solutions, unity health toronto, toronto, canada; 5dalla lana school of public health, university of toronto, toronto, canada; 6priorities on rights and sexual health, accra, ghana; 7university of ghana school of public health, accra, ghana; 8department of human development, state university of new york at binghamton, binghamton, new york usa; 9faculty of humanities, university of johannesburg, johannesburg, south africa corresponding author: g.m’r abubakari (mohammed-rabiu.abubakari@yale.edu) abstract despite constituting only about 1% of ghana’s population, men who have sex with men (msm) carry a disproportionate burden of hiv infections, constituting 18% of the population of people living with hiv in the country. scholars have associated the disproportionate infection rates of hiv among msm with existing structural factors (such as criminalization and stigma against msm), and individual-level factors (such as sex without a condom, and transactional sex). nonetheless, only a few scholars consider intervention as an approach to reducing hiv and other std risk among msm in the country. as such, in collaboration with community partners, we engaged msm through the use of the adapt-itt model to adapt the many men many voices (3mv) to address the needs of msm. we addressed std risk factors and ways to reduce hiv infections. in this paper, we describe the use of the adapt itt model in the adoption and adaptation of the 3mv with msm in ghana. whereas the 3mv was a good fit for our target population, we made modifications to fit the ghanaian cultural setting by examining hiv and other std risk in the context of bisexuality, insisting on discretion in choosing our location, and on incorporating a historical colonial setting in contextualizing sexuality and stigma in the ghanaian sociocultural context. our implementation process shows the efficacy of collaboration with community partners to implement culturally relevant interventions in hiv and std prevention efforts in highly stigmatized environments. keywords adapt-itt, community participatory research, ghana, hiv/std, implementation science, many-men-many-voice 3mv, msm introduction the united nations program on hiv and aids (unaids) aims to eradicate human immunodeficiency virus (hiv) among member countries by 2030, yet several african countries face pervasive challenges in reducing the hiv incidence (poku, 2016; joint united nations programme on hiv/aids, 2014). in 2019, the estimated national prevalence rate of hiv in ghana was about 2%, representing 342, 307 individuals living with hiv (ghana aids commission, 2020). whereas ghana recorded some progress in reducing hiv infections, the msm population remains disproportionately affected and at high risk as 2 ihtp, 1(1), 1-16, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 compared to the general population (ghana aids commission, 2020). despite constituting only 1% of ghana’s population, the most recent ghana men study report show that msm account for 18.1% of people living with hiv in the country with regional rates ranging from 42.2% in greater accra to 4.3 in northern ghana (gac, 2017). however, prior studies have predominately shown that msm in ghana and africa experience high levels of stigma and discrimination due to sexual orientation, social isolation, hiv status, and gender non-conformity (caroll & itaborahy, 2015; kushwaha et al., 2017; nelson et al., 2016). each of these stigmas alone impacts hiv testing and access to care, however, together they produce an even greater impact on the health of ghanaian msm (kushwaha et al, 2017; nelson et al, 2016; girault et al., 2015). these stigmas originating from community members, family, friends, and even health care providers, and law enforcement affect msm confidence in disclosing their sexuality and engaging with hiv prevention and care services (kushwaha et al., 2017; nelson et al., 2016; girault et al., 2015; abubakari et al., 2020; nelson et al., 2015; nyblade et al., 2017; ogunbajo et al., 2018). for instance, some msm reported that when healthcare providers realize they engage in same-sex activities, they say that it is against religion and culture (kushwaha et al., 2017; abubakari et al., 2020). consequentially, msm remain challenged with hiv risk factors such as inconsistent condom use during sexual intercourse, substance use, multiple sexual partners and the disproportionate burden of hiv infections (gac, 2017; kushwaha et al., 2017; nelson et al., 2015; evans et al., 2016). whereas previous studies have attempted to understand the conditions and hiv risk factors among msm in the country, such studies fail to address the complexities of issues that affect msm and to provide interventions that address the needs of the msm community (kushwaha et al., 2017; nelson et al., 2015). to account for this gap, our team identified the many men many voices (3mv) as an appropriate intervention that can be adapted for implementation among ghana msm. many men, many voices (3mv) the 3mv is a seven-session group-based hiv prevention intervention designed for black gay, bisexual, and other men who have sex with men (msm) (wilton et al., 2019). the program incorporates social and cultural norms and addresses the effects of racism and homophobia. specifically, it aims at increasing condom use, reducing the number of sex partners, increasing hiv and other std testing, enhancing msm self-esteem on sexual and racial identity, building a menu of behavioral options for hiv and other std risk reduction, and providing social support (abubakari et al., 2020; wilton et al., 2009). details of the 3mv specific sessions in the context of our adaptation are outlined elsewhere (abubakari et al., 2020). the adapt-itt to adapt the 3mv to fit the ghanaian context, we used the adapt-itt model (table 1), an eight-phase process used to inform the adoption and adaptation of evidence-based interventions for populations and contexts (wingwood et al., 2011a; wingwood et al., 2008; wingwood et al., 2011b). the model was developed based on a need to appropriately adapt interventions, initially in the field of hiv, while maintaining the theoretical premise and core components of the original efficacious intervention (wingwood et al., 2011a; wingwood et al., 2008; wingwood et al., 2011b). the model begins with assessing the needs and experiences of the new target population (assessment), deciding on an intervention to be adopted (decision), pretesting the original intervention via theatre testing with the new target population to assess the changes needed for content and delivery (adaptation), producing a draft intervention manual (production), identifying topical experts to review and provide feedback to the revised manual (topical expert), integrating this feedback (integration), training staff to administer the new intervention (training), and pilot testing the intervention (testing) (wingwood et al., 2011a; wingwood et al., 2008; wingwood et al., 2011b). the adapt-itt model has been used within the united states and internationally to culturally adapt evidence-based interventions (wingwood et al., 2011a; wingwood et al., 2008; wingwood et al., 2011b; pan et al., 2020). although primarily developed in the field of hiv, the model has also been used to adapt interventions addressing a variety of fields, such as substance use disorders and mental health (druss et al., 2010; satinsky et al., 2020; latham et al., 2020; marhefka et al., 2014; sullivan et al., 2014; craig rushing et al., 2016; audet et al., 2017; bere et al., 2017; chen et al., 2013; haynes et al., 3 ihtp, 1(1), 1-16, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 2014; saleh-onoya et al., 2008). within the field of hiv, the adapt-itt model has been used in the adaptation of interventions in hiv risk reduction, hiv prevention, hiv testing, counseling, and treatment adherence (latham et al., 2020; marhefka et al., 2014; sullivan et al., 2014; craig rushing et al., 2016; audet et al., 2017; bere et al., 2017). a variety of models can be used for program adaptation (chen et al., 2013; haynes et al., 2014; saleh-onoya et al., 2008; hohmeier et al., 2019). however, the adapt itt model is unique among other adaptation models as it utilizes triangulation, directly includes participation from the targeted population and stakeholders and provides a systematic approach to guide the program adaptation (card et al., 2011; cederbaum et al., 2014; knight et al., 2014; escoffery et al., 2019; escoffery et al., 2018). this iterative, community-driven adaptation positions the model to be useful in addressing the needs of msm in ghana. in this paper, we describe the use of the adapt-itt model in the adoption and adaptation of the 3mv into nyansapo to address the diverse needs of men who have sex with men in ghana. methods and results adaptation of the 3mv into the nyansapo intervention using the adapt-itt framework phase 1: assessment the assessment phase typically includes an initial data collection to examine the priorities of the target population that will participate in the intervention. the intervention team also examines the capacity of the implementing organization to manage and execute an intervention to the benefit of the target population (wingwood et al., 2011a; wingwood et al., 2008). procedures and findings. the lead organization, priorities on rights and sexual health (porsh), in ghana, is a non-governmental organization (ngo) concerned with sexual health of msm in ghana. msm that work with porsh provided feedback on the need for an intervention that addresses the specific needs of msm as previous research among msm were largely epidemiological. the msm identified the need for interventions that provide them the necessary know-how to confront some of their challenges such as understanding sexuality, gender norms, hiv risk, and harm reduction strategies. discussion among the staff of the organization and the principal investigator (pi), as well as a review of the content of previous research in ghana, were conducted to help shape the direction of an intervention that will meet the priorities of the participants. thus, the lead investigators examined the 3mv intervention as appropriate to meet the needs of ghanaian msm. based on the scope of the organization, the team assessed the capacity of the staff to implement the 3mv intervention. we examined the knowledge of the staff on the subject matter and their ability to recruit, organize, and effectively deliver the program. reports from previous studies supported the need for intervention among the msm in ghana; they have a disproportionate prevalence of hiv compared to the general population and other key populations such as the sex workers. they also report high existence of stigma and low understanding of gender and sexual identity and related risk. msm in ghana did not have a clear understanding of homosexual identity and bisexuality, and the kind of risk associated with positions during penetrative sex. porsh had the capabilities to implement an intervention because the staff identify as msm and understand msm lived experiences (kushwaha et al., 2017; nelson et al., 2015). modifications/actions. whereas 3mv was identified as an appropriate intervention, modifications were not carried out at this stage. instead of the typical research procedure where needs are assessed as part of the model adapted, our assessment was based on deliberations with the community partners and review of the previous studies conducted by the team among msm in the country. phase 2: decision the decision phase of the adapt-itt model includes selecting an applicable intervention to be adopted or adapted based on community needs. if adaptation is required, initial aspects to be adapted are noted (wilton et al., 2009; wingwood et al., 2009; wingwood et al., 2011a; wingwood et al., 2008; wingwood et all., 2011b). procedures and findings. as indicated in the assessment stage, the decision-making process occurred via iterative conversations between the study pi and members of porsh in accra, ghana. the 4 ihtp, 1(1), 1-16, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 community partners agreed that 3mv meets the scope of the intervention needed as it can be tailored to fit the ghanaian cultural setting in the modification stages. ghanaian team members identified the need for an alteration to focus on gender and sexual identity among msm in ghana. they also sought maintenance of the 3mv focus on health-seeking behaviors but also for a holistic focus that will address the lived experiences of ghanaian msm, rather than solely sexual behavior (table 2). modifications/actions. intervention needs and considerations. the 3mv is a cdc identified evidence based intervention that also meets the criteria identified by the ghanaian team. hence, the study pi sent the 3mv intervention manual to the ghanaian team for review. as shown in table 2, the goals of the 3mv did not change as they fit with the objectives of the identified exigencies in ghana. however, modifications were made to content areas to fit the ghana cultural context. adaptations needed. a historical component was added to connect the history of colonialism, religion, the criminalization of same-sex sexual acts, and the stigma attached to msm in ghana. a historical site visit to elmina castle (castle and slave dungeons where slaves were housed and transported by the colonial masters) was included to provide a symbolic overview of colonialism and its accompanying factors such as religion, anti-gay sentiments, and thoughts on abandoning or holding on to such colonial impacts on perceptions and social norms. the team also agreed to focus more on bisexual identity due to the prevalence of bisexuality among ghanaian msm. the adopted intervention was named nyansapo (refers to wisdom in achieving a goal in the language of twi) to also reflect the ghanaian fabric. two facilitators were trained on 3mv to ensure that they were fully capable of group facilitation and delivering the intervention. phase 3: adaptation the adaptation phase of the adapt-it model is about pre-testing the intervention with the target population to ascertain their thoughts about the intervention, mobilize feedback on the format and content of the intervention, and receive recommendations for improving the acceptability of the intervention among the target audience (sullivan et al., 2014). in our implementation, this phase was completed in partnership with the ghana team. procedure and findings. the designated facilitators traveled from ghana to the united states for training on the various components of the 3mv. during the training, trainers and trainees iteratively identified key areas that required modifications and collected feedback and recommendations on the intervention. it was commonly agreed that no major modifications to the intervention were needed as the adaption needed to remain true to the intervention goals. however, there was an increased need to adjust the intervention to socio-historical contexts related to colonialism, religion, and ghanaian cultural values and worldviews. there was also a reiterated need for discussions on bisexuality. modification/action. minor modifications focusing on culture, language, ethnicity, cultural groups, and religions were reinforced as necessary to fit the ghana socio-cultural context. the modifications also provided attention to social issues such as law enforcement and violence. this was important because msm in ghana often face physical and verbal violence from community members. due to the criminalization of homosexuality in the country, msm do not often report abuse to law enforcement due to the fear of stigma. discussions continued on the integration of local language in identifying msm and bisexuality and related risks due to the prevalence of bisexuality in ghana. phase 4: production the phase of production includes creating the material needed for the program (sullivan et al., 2014). for the modified 3mv (nyansapo) intervention, the phase included the creation of the nyansapo manual that corresponds to the 3mv intervention, and supplemental materials to support the content areas. procedure and findings. as discussed in earlier stages, the team assessed the 3mv to check its suitability for adaptation into nyansapo sites and also assessed the suitability for hosting the msm during the three-day intervention. we examined sites for the following considerations: room capacity, privacy, transportation, security, and nearness to risks such as a religious body, or a popular spot such as a club. such considerations were crucial due to the need to conceal the identity of participants, and to limit their exposure to danger or community reaction. due to a 5 ihtp, 1(1), 1-16, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 lack of acceptance, msm in ghana remain hidden and are not comfortable in easily accessible or highly visible settings. a site (an isolated beach resort) was chosen in the central region of ghana, and a manual was created for implementation during the intervention. modification/action. the nyansapo manual was created with detailed activities for subject areas of the 3mv. the new manual was designed to take into account the modifications identified to include the historical context of the criminalization of homosexuality, and sexual identity. phases 5 and 6: topical experts and feedback integration the topical experts phase consisted of identifying content experts related to the intervention (sullivan et al., 2014). procedures and findings. during the study, three scholars with expertise in hiv prevention and care research and community engagement among msm were identified. modification/action. no modifications were made during these phases as we involved the relevant experts from the outset of the nyansapo manual design. however, they recommended the integration of graduation and certification components to the intervention. all msm who participated in the training attended a graduation ceremony and were presented with certificates to show that they understood the complexity of hiv and std risk and prevention processes. phase 7: training the training process involved, a three-day training of co-facilitators and assistants on how to deliver the adapted 3mv intervention (nyansapo) (sullivan et al., 2014). the training was conducted by facilitators who went to the original 3mv training in the us. the training of co-facilitators and assistants aimed at ensuring buy-in and engagement in implementing the intervention. it also focused on developing skills and practicing the delivery of the intervention, including updating and refining the training materials. our initial adaptation emphasized the importance of focusing on language, issues related to local language identity, religious identity, colonialism, violence, and law enforcement based on the ghanaian context. the facilitators were trained on how to integrate these socio-political issues into their delivery on nyansapo while staying true to the key components of the 3mv intervention. the team was also trained on how to use recorders, ipad, and other materials to collect data from participants. they were also trained to facilitate group cohesion, and remain focused on fundamental intervention elements, as well as to conduct intervention sessions. phase 8: testing the testing phase includes a pilot test of the adapted intervention (sullivan et al., 2014). procedures and findings. to assess the primary study outcomes, quantitative data were collected from study participants at baseline and post intervention. participants also completed post intervention focus groups which were audio-recorded and transcribed. data were also obtained from written staff debriefings. for the pre-and post intervention surveys, each participant completed a survey with the aid of an ipad before departure to the retreat venue or before partaking in the activities scheduled for the session. each participant also completed a survey after completing the session activities before leaving the retreat location. additionally, a sample of participants reported to the office of the host organization to complete a one week post-intervention survey and a focus group discussion. the survey focused on several parts of msm life in ghana and sexual health or support groups. the first part of the survey gathered demographic information of participants; relationship status, ethnicity, education, approximate individual income, and sexual orientation or attraction. the second part collected information on (1) sexual activities of participants; episodes and reasons for vaginal, anal, and oral sex, and the openness of sexual activities; (2) hiv and sti testing and sexual risk behaviors; hiv status, episode of hiv and sti testing and concerns about infections, condom use during anal, oral and vaginal sex, new sexual partners and practice of safe sex; (3) participant understanding of risk concerns, various types of stis and their association to contracting others stis and hiv, use of condoms among men of different sexual roles such as tops and bottoms; (4) interpersonal relationships; comfort, demeanor, acceptance, and influence if 6 ihtp, 1(1), 1-16, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 around peers, perceived gender physical appearance and roles, stereotypes, stigma, gender nonconforming behaviors and compromises; (5) experience of direct or indirect violence; physical harassment episode, beating due to sexuality or gender-non conforming behavior, rejection by family, loss of friends and associates, harassment from law enforcement, housing or accommodation issues, employment issues; (6) hiv stigma; rejection of people living with hiv, by family and friends, perception of shame associated to hiv, perception of bad behavior on plhiv, perception of guilt, perception of religious sins; and (7) gender roles; perceived male and female social, economic, sexual, household chores and family responsibilities, gender and marital based violence, promiscuity among married couples. the post intervention surveys also asked intention evaluation specific questions focused on the expertise of facilitators, receptivity and response to questions, discussion of sensitive topics, group dynamics and facilitation, listening, comfortability with topics and inclusive learning environment, compassion, and relatability to participants. on the materials used for discussions, the survey gathered information on the helpfulness and usefulness of materials. participants also reported via the focus groups, their overall thoughts on the impact of the intervention on their perception and knowledge of the content area and their intent of utilization of lessons learned from the intervention. the results from the study surveys and focus groups were reported elsewhere (abubakari et al., 2020). modification/action. testing occurred via a parallel pilot and implementation strategy, in which the first application consisted of a true pilot and subsequent changes were made to the intervention as needed. study outcomes have been reported elsewhere (abubakari et al., 2010). briefly, study findings indicated that the intervention was feasible and acceptable in the study context. in post intervention participant focus groups participants reported that future iterations of the program could be improved by continued check-ins from program staff, increased conversation regarding justice issues and lgbt rights, and using social media so that participants can have continued contact post-retreat. staff debriefings. staff debriefings highlighted the importance of holding the retreats away from typical participant distractions. staff described that some participants recommended increased opportunities for community building, such as sporting activities. however, others noted that a balance between intervention material and community-building was needed. staff noted that some participants wanted to test for hiv immediately upon assessing their risk and that having such resources readily available may benefit participants. staff indicated that participants asked for greater outside interaction, hence, the collaboration with a nurse to attend an intervention session to speak about treatment as prevention and sti transmission. similarly, two msm police who engage with porsh attended a session to address discrimination, emphasize participants’ rights, describe how to report abuses, and provide a safe space for participants to report issues safely. discussion in this paper, we describe the use of the adapt-itt model in the adoption and adaptation of the 3mv with msm in ghana. despite the existing disproportionate infection rates of hiv among msm and its association with existing structural factors (such as criminalization and stigma against msm), and individual-level factors (such as sex without a condom, and transactional sex) in ghana and other sub-saharan african countries, only a few scholars consider intervention as an approach to reducing hiv and sti risk among msm in the country (koblin et al., 2006; baral et al., 2011; cloete et al., 2013; logie et al., 2012; nelson et al., 2015; park et al., 2013; sabin et al., 2018). as such, in collaboration with community partners, we engaged msm through the use of the adapt-itt model (table 1) to adapt the 3mv (table 2) to address hiv and std risk factors and contribute to reducing hiv infections (abubakari et al., 2020). whereas some scholars used the adapt-itt in implementing interventions on hiv, substance use, and domestic violence in other settings, our processes serve as an early example of a successfully implemented culturally grounded intervention in west africa that could be replicated by other scholars looking to implement interventions to address key and hidden populations such as msm in other highly stigmatized settings (wingwood et al., 2011a; wingwod et al., 2008; druss et al., 2010; satinsky et al., 2020). some of the key successes of our implementation are due to our ability to maintain the goals of the adapt-itt framework, identify 3mv as a suitable intervention for adaptation, modify the 3mv to fit the ghanaian msm cultural setting, maintain 7 ihtp, 1(1), 1-16, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 successful recruitment and retention rates, and ensure a safe and secure environment for implementation. these successes are also the result of our ability to collaborate with an msm community-based organization at all stages of the implementation process. the adapt-itt model supports the appropriate adaption of interventions in the field of hiv and new populations while maintaining the theoretical premise and core components of the original efficacious intervention (wingwood et al., 2008; sullivan et al., 2014). as indicated in tables 1 and 2, the 3mv was a good fit as it met the recommendation by the adapt-itt for an adaptation of a cdc recommended intervention, and we did not have to change the goals of the 3mv or its key components (wingwood et al., 2008; sullivan et al., 2014). the 3mv met our goals of working with msm to positively influence behaviors such as condom use, reduction in sexual partners, increase hiv and std testing as well as address and contextualize sociopolitical issues such as criminalization and stigma in a safe setting (abubakari et al., 2020). nonetheless, as observed by other implementers of the adapt-itt, we made minor alterations to some of the contents of the intervention to ensure fit with the ghanaian msm and general cultural/historical settings (wingwood et al., 2011a, latham et al., 2010; marhedfka et al., 2014; sullivan et al., 2014; craig et al., 2016; audet et al., 2017; bere et al., 2017; cederbaum et al., 2014). one of the key elements of the original 3mv focuses on enhancing self-esteem related to racial identity and sexual behavior (wingwood et al., 2009). however, reports from our key partners and previous studies identified from ghana show that a large proportion of msm in the country identify as bisexual or have occasional sexual intercourse with women for various reasons including stigma (kushwaha et al., 2017; ogunbajo et al., 2020). as such, we focused more on discussing bisexuality, as well as condom use for various forms of sex including anal and vaginal sex to cater to participant needs. specifically, instead of focusing on risk associated with having sex with men, we sought to create an understanding of what it means to have sex with both men and women, and the type of risks involved in unprotected sex with either sexes. our pre-intervention results also confirmed the need to look more into bisexuality as 71.9% of our 57 participants reported that they have sex with both men and women (abubakari et al., 2020). additionally, unlike the original 3mv and other feasibility studies conducted in the context of african americans in the united states, we had to reduce the emphasis on racial identities to focus on religious, language, ethnic, and or cultural diversities among the participants (abubakari et al., 2020; ogunbajo et al., 2020). as reported in our findings in this context, ghana has several ethnic groups that were featured in our program (abubakari et al., 2020). there were no conditions for racial disparities and or issues surrounding racial identities as the country is a black nation. instead, as documented in several studies, current ghanaian laws that criminalize msm activities and promote stigma originating from religious thought and inherited through colonization (caroll & itaborahy, 2015; dai-kosi et al., 2016; tettey, 2016; tweneboah, 2018; gyamerah et al., 2020). we insisted, therefore, on incorporating such history in our contextualization of the current ghanaian understanding of sexuality and its impact on sexual identification. as shown in our findings reported earlier, such discussions promoted a strong grounding for understanding sexuality and the role of societal structures in creating narratives around sexuality (abubakari et al., 2020). to make it more practical, we included a historical site trip to the elmina castle in the central region of ghana where we held the retreat. at the castle, participants received tours and listened to narratives on slavery, religion, and the influence of colonization on the current sociopolitical landscape of the country. the practical component strengthened the discussion and awakened or created awareness among participants who did not have a full understanding of the colonial history and its impacts on laws, norms, and values of the ghanaian society. we included these changes in the manual during the production and training stages to ensure that facilitators understood and implemented each component of the 3mv. as noted in several studies on key populations and particularly those in african countries, recruitment, retention, and safety concerns remain key in ensuring the success of studies, hence, a gateway to recruitment remains through msm organizations and peer referrals (muller et al., 2018; van loggerenber et al., 2008; smith et al., 2009; transactional sex, 2020; 8 ihtp, 1(1), 1-16, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 hunter et al., 2020). as such, our program had great success in the recruitment and retainment of participants due to the involvement of community based organizations that work with msm in the country. recruitment rates increased after the first retreat when the initial participants sent word out to other msm to participate in the program. the driving factors as gathered in our findings in abubakari et al., (2020) was our ability to ensure that we chose a location outside of central parts of the cities that provided a discreet and carefree environment where msm were able to feel comfortable without judgment or imminent danger of attack (abubakari et al., 2020). also, we incorporated fun activities such as sports, swimming (we were located on a beach resort), dance events, and acting to enhance the enjoyment of participants. the most important for us was the key leadership role our partner organization took in the implementation of the program. porsh took leadership at levels of the implementation, thus, providing participants a sense of belonging due to their familiarity with and trust of porsh. whereas our findings reported in abubakari et al., (2020) show strong potentials in improving sexual health through the reduction of risk factors (such as sex without a condom and a development of menu items), increases in service utilization (voluntary hiv testing), our study highlights some shortcomings concerning monitoring and supporting the sustenance of peer networks, behavioral changes and the need for a longitudinal evaluation of outcomes (abubakari et al., 2020). although our study helped in setting up peer networks to support individual efforts to maintain a positive attitude towards sexual identity, and sexual health, our model and modified intervention did not create a mechanism to continue to monitor and maintain these groups and to support the changing needs of sexual health practices among participants. as shown by many studies, maintenance of social networks contributes to minimizing the negative effects of stigma and hiv-risk and encourages the use of hiv services (hunter et al., 2020; heckathorn et al., 1999; helleringer & kohler, 2005). our future work will look to incorporate sustainable practices to ensure continuity of program impact among participants. also, we only evaluated the impact of the program one-week and one-month post evaluation, hence, we could not establish the longitudinal impact of the program. future research will incorporate longitudinal strategies of monitoring and evaluating our program impacts to contribute to the current understanding of changes in participants and to inform current research trajectories. nonetheless, our study strongly positions community participatory interventions such as the 3mv and the adapt-itt framework as key tools to assessing, identifying, and adapting interventions that have a significant impact on positively influencing behavior and sexual health practices among hidden populations in highly stigmatized environments. references abubakari, g. m., nelson, l. e., ogunbajo, a., boakye, f., appiah, p., odhiambo, a., ting, s., nanhua, z., ironyah, n., adjei, s., geoffrey, m., akubakar, m., & torpey, k. (2020). implementation and evaluation of a culturally grounded group-based hiv prevention programme for men who have sex with men in ghana. global public health, 1-18. doi:10.1080/17441692.2020.1832555 audet, c. m., salato, j., vermund, s. h., & amico, k. r. (2017). adapting an adherence support workers intervention: engaging traditional healers as adherence partners for persons enrolled in hiv care and treatment in rural mozambique. implementation science: is, 12(1), 50-50. doi:10.1186/s13012-017-0582-z baral, s., burrell, e., scheibe, a., brown, b., beyrer, c., & bekker, l. (2011). hiv risk and associations of hiv infection among men who have sex with men in peri-urban cape town, south africa. bmc public health, 11(1), 766-766. doi:10.1186/1471-2458-11-766 bere, t., nyamayaro, p., magidson, j. f., chibanda, d., chingono, a., munjoma, r., macpherson, k., ndhlovu, c.e., o’cleirigh, c., kidia, k., safre, s.a., & abas, m. (2017). cultural adaptation of a cognitive-behavioural intervention to improve adherence to antiretroviral therapy among people living with hiv/aids in zimbabwe: nzira itsva. journal of health psychology, 22(10), 1265-1276. doi:10.1177/1359105315626783 card, j. j., solomon, j., & cunningham, s. d. (2011). how to adapt effective programs for use in new contexts. health promotion practice, 12(1), 25 35. doi:10.1177/1524839909348592 caroll, a., & itaborahy, l. (2015). state-sponsored homophobia: a world survey of laws: 9 ihtp, 1(1), 1-16, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 criminalisation, protection and recognition of same-sex love. ilga. cederbaum, j. a., song, a., hsu, h., tucker, j. s., & wenzel, s. l. (2014). adapting an evidence based intervention for homeless women: engaging the community in shared decision making. journal of health care for the poor and underserved, 25(4), 1552-1570. doi:10.1353/hpu.2014.0188 chen, e. k., reid, m. c., parker, s. j., & pillemer, k. (2013). tailoring evidence-based interventions for new populations: a method for program adaptation through community engagement. evaluation & the health professions, 36(1), 73 92. doi:10.1177/0163278712442536 cloete, a., kalichman, s.c., & simbayi, l.c. (2013). layered stigma and hiv/aids: experiences of men who have sex with men (msm) in south africa. in stigma, discrimination and living with hiv/aids 2013 (pp. 259-269). springer, dordrecht. craig rushing, s., & gardner, w. (2016). native voices: adapting a video-based sexual health intervention for american indian teens and young adults using the adapt-itt model. american indian and alaska native mental health research, 23(1), 24-46. doi:10.5820/aian.2301.2016.24 dai-kosi, a. d., asamani, l., & adomako, b. (2016). ghanaian perspectives on the present day dynamics of homosexuality. african research review, 10(5), 1. https://doi.org/10.4314/afrrev.v10i5.1 druss, b. g., zhao, l., von esenwein, s. a., bona, j. r., fricks, l., jenkins-tucker, s., sterling, e., diclemente, r., & lorig, k. (2010). the health and recovery peer (harp) program: a peer-led intervention to improve medical self management for persons with serious mental illness. schizophrenia research, 118(1), 264-270. doi:10.1016/j.schres.2010.01.026 escoffery, c., lebow-skelley, e., haardoerfer, r., boing, e., udelson, h., wood, r., hartman, m., fernandez, m.e., & mullen, p. d. (2018). a systematic review of adaptations of evidence based public health interventions globally. implementation science: is, 13(1), 125-125. doi:10.1186/s13012-018-0815-9 escoffery, c., lebow-skelley, e., udelson, h., böing, e. a., wood, r., fernandez, m. e., & mullen, p. d. (2019). a scoping study of frameworks for adapting public health evidence-based interventions. translational behavioral medicine, 9(1), 1-10. doi:10.1093/tbm/ibx067 evans, m. g. b., cloete, a., zungu, n., & simbayi, l. c. (2016). hiv risk among men who have sex with men, women who have sex with women, lesbian, gay, bisexual and transgender populations in south africa: a mini-review. the open aids journal, 10(1), 49-64. doi:10.2174/1874613601610010049 ghana aids commission (gac). (2017). ghana men's study -2017. mapping and population size estimation (mpse) and integrated bio behavioral surveillance survey (ibbss) amongst men who have sex with men (msm) in ghana (round ii). accra. ghana. https://www.ghanaids.gov.gh/mcadmin/upload s/ghana%20men%27s%20study%20report(2).p df ghana aids commission. (2020). 2019 hiv estimates and national projections. https://www.ghanaids.gov.gh/mcadmin/upload s/2019%20national%20and%20sub national%20estimates%20and%20projections% 20dissemination%2021.07.2020.pdf girault, p., green, k., clement, n. f., rahman, y. a. a., adams, b., & wambugu, s. (2015). piloting a social networks strategy to increase hiv testing and counseling among men who have sex with men in greater accra and ashanti region, ghana. aids and behavior, 19(11), 1990-2000. doi:10.1007/s10461-015-1069-z gyamerah, a. o., taylor, k. d., atuahene, k., anarfi, j. k., fletcher, m., raymond, h. f., mcfarland, w., & dodoo, f. n. (2020). stigma, discrimination, violence, and hiv testing among men who have sex with men in four major cities in ghana. aids care, 32(8), 1036-1044. doi:10.1080/09540121.2020.1757020 haynes, v., escoffery, c., wilkerson, c., bell, r., & flowers, l. (2014). adaptation of a cervical cancer education program for african americans in the faith-based community, atlanta, georgia, 2012. preventing chronic disease, 11, e67-e67. doi:10.5888/pcd11.130271 heckathorn, d. d., broadhead, r. s., anthony, d. l., & weakliem, d. l. (1999). aids and social networks: hiv prevention through network mobilization. sociological focus (kent, ohio), 32(2), 159-179. doi:10.1080/00380237.1999.10571133 helleringer, s., & kohler, h. (2005). social networks, perceptions of risk, and changing attitudes https://www.ghanaids.gov.gh/mcadmin/uploads/ghana%20men%27s%20study%20report(2).pdf https://www.ghanaids.gov.gh/mcadmin/uploads/ghana%20men%27s%20study%20report(2).pdf https://www.ghanaids.gov.gh/mcadmin/uploads/ghana%20men%27s%20study%20report(2).pdf http://www.ghanaids.gov.gh/mcadmin/upload 10 ihtp, 1(1), 1-16, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 towards hiv/aids: new evidence from a longitudinal study using fixed-effects analysis. population studies, 59(3), 265-282. doi:10.1080/00324720500212230 hunter, j., van blerk, l., & shand, w. (2020). the influence of peer relationships on young people's sexual health in sub-saharan african street contexts. social science & medicine (1982), 113285-113285. doi:10.1016/j.socscimed.2020.113285 hohmeier, k. c., wheeler, j. s., turner, k., vick, j. s., marchetti, m. l., crain, j., & brookhart, a. (2019). targeting adaptability to improve medication therapy management (mtm) implementation in community pharmacy. implementation science: is, 14(1), 99-99. doi:10.1186/s13012-019-0946-7 joint united nations programme on hiv/aids. (2014). fast-track: ending the aids epidemic by 2030. geneva: unaids. https://www.unaids.org/sites/default/files/medi a_asset/unaids_fasttrack_highlights_en.pdf knight, k. r., das, m., demicco, e., raiford, j.l., matheson, t., shook, a., antinez, e., santos, g.m., dadasovich, r., dilley, j.w., colfax, g.n., & herbst, j. h. (2014). a roadmap for adapting an evidence-based hiv prevention intervention: personal cognitive counseling (pcc) for episodic substance-using men who have sex with men. prevention science, 15(3), 364-375. doi:10.1007/s11121-013-0364-z koblin, b. a., husnik, m. j., colfax, g., huang, y., madison, m., mayer, k., barresi, p.j., coates, t.j., chesney, m.a., & buchbinder, s. (2006). risk factors for hiv infection among men who have sex with men. aids (london), 20(5), 731-739. doi:10.1097/01.aids.0000216374.61442.55 kushwaha, s., lalani, y., maina, g., ogunbajo, a., wilton, l., agyarko-poku, t., adu-sarkodie, y., boakye, f., zhang, n., & nelson, l. e. (2017). "but the moment they find out that you are msm…": a qualitative investigation of hiv prevention experiences among men who have sex with men (msm) in ghana's health care system. bmc public health, 17(1), 770-770. doi:10.1186/s12889-017-4799-110(1), 65-77. doi:10.2174/1874613601610010065 latham, t. p., sales, j. m., boyce, l. s., renfro, t. l., wingood, g. m., diclemente, r. j., & rose, e. (2010). application of adapt-itt: adapting an evidence-based hiv prevention intervention for incarcerated african american adolescent females. health promotion practice, 11(3_suppl), 53s-60s. doi:10.1177/1524839910361433 logie, c. h., newman, p. a., chakrapani, v., & shunmugam, m. (2012). adapting the minority stress model: associations between gender non conformity stigma, hiv-related stigma and depression among men who have sex with men in south india. social science & medicine (1982), 74(8), 1261-1268. doi:10.1016/j.socscimed.2012.01.008 marhefka, s. l., buhi, e. r., baldwin, j., chen, h., johnson, a., lynn, v., & glueckauf, r. (2014). effectiveness of healthy relationships video group—a videoconferencing group intervention for women living with hiv: preliminary findings from a randomized controlled trial. telemedicine and e-health, 20(2), 128–134. https://doi.org/10.1089/tmj.2013.0072 müller, a., spencer, s., meer, t., & daskilewicz, k. (2018). the no-go zone: a qualitative study of access to sexual and reproductive health services for sexual and gender minority adolescents in southern africa. reproductive health, 15(1), 1-15. doi:10.1186/s12978-018 0462-2 nelson, l.e., mcmahon, j., zhang n, adu-sarkodie y, mayer kh. (2016). exploring hiv, same-sex and gender non-conformity stigmas and delays in hiv diagnosis, linkage and retention for msm in ghana. national institute of mental health. nelson, l. e., wilton, l., agyarko‐poku, t., zhang, n., aluoch, m., thach, c. t., owiredu hanson, s., & adu‐sarkodie, y. (2015). the association of hiv stigma and hiv/std knowledge with sexual risk behaviors among adolescent and adult men who have sex with men in ghana, west africa. research in nursing & health, 38(3), 194-206. doi:10.1002/nur.21650 nelson, l. e., wilton, l., agyarko-poku, t., zhang, n., zou, y., aluoch, m., apea, v., hanson, s.o., & adu-sarkodie, y. (2015). predictors of condom use among peer social networks of men who have sex with men in ghana, west africa. plos one, 10(1), e0115504-e0115504. doi:10.1371/journal.pone.0115504 ogunbajo, a., kershaw, t., kushwaha, s., boakye, f., wallace-atiapah, n.d., & nelson, l. e. (2018). barriers, motivators, and facilitators to engagement in hiv care among hiv-infected ghanaian men who have sex with men (msm). http://www.unaids.org/sites/default/files/medi 11 ihtp, 1(1), 1-16, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 aids and behavior, 22(3), 829-839. doi:10.1007/s10461-017-1806-6 ogunbajo, a., leblanc, n. m., kushwaha, s., boakye, f., hanson, s., smith, m. d. r., & nelson, l. e. (2020). knowledge and acceptability of hiv pre exposure prophylaxis (prep) among men who have sex with men (msm) in ghana. aids care, 32(3), 330-336. doi:10.1080/09540121.2019.1675858 pan, s., sun, s., li, x., chen, j., xiong, y., he, y., & pachankis, j. e. (2020). a pilot cultural adaptation of lgb-affirmative cbt for young chinese sexual minority men's mental and sexual health. psychotherapy (chicago, ill.), doi:10.1037/pst0000318 park, j. n., papworth, e., kassegne, s., moukam, l., billong, s. c., macauley, i., yomb, y.r., nkoume, n., mondoleba, v., eloundou, j., lebreton, m., tamoufe, u., grosso, a., & baral, s. d. (2013). hiv prevalence and factors associated with hiv infection among men who have sex with men in cameroon. journal of the international aids society, 16(si), 18752-n/a. doi:10.7448/ias.16.4.18752 poku, n. k. (2016). hiv prevention: the key to ending aids by 2030. the open aids journal, 10(1), 65 77. doi:10.2174/1874613601610010065 sabin, l. l., beard, j., agyarko-poku, t., desilva, m., ashigbie, p., segal, t., esang, m., asafo, m.k., wondergem, p., green, k., wambugu, s., & adu sarkodie, y. (2018). "too much sex and alcohol": beliefs, attitudes, and behaviors of male adolescents and young men who have sex with men in ghana. the open aids journal, 12(1), 69 80. doi:10.2174/1874613601812010069 saleh-onoya, d., braxton, n. d., sifunda, s., reddy, p., ruiter, r., van den borne, b., walters, t.p., lang, d., & wingood, g. m. (2008). sista south africa: the adaptation of an efficacious hiv prevention trial conducted with african american women for isixhosa-speaking south african women. sahara j: journal of social aspects of hiv/aids research alliance, 5(4), 186 191. doi:10.1080/17290376.2008.9724918 satinsky, e. n., doran, k., felton, j. w., kleinman, m., dean, d., & magidson, j. f. (2020). adapting a peer recovery coach-delivered behavioral activation intervention for problematic substance use in a medically underserved community in baltimore city. plos one, 15(1), e0228084-e0228084. doi:10.1371/journal.pone.0228084 smith, a. d., dr, tapsoba, p., md, peshu, n., mph, sanders, e. j., phd, & jaffe, h. w., prof. (2009). men who have sex with men and hiv/aids in sub-saharan africa. the lancet (british edition), 374(9687), 416-422. doi:10.1016/s0140 6736(09)61118-1 sullivan, p. s., stephenson, r., grazter, b., wingood, g., diclemente, r., allen, s., hoff, c., salazar, l., scales, l., montgomery, j., schwartz, a., barnes, j., & grabbe, k. (2014). adaptation of the african couples hiv testing and counseling model for men who have sex with men in the united states: an application of the adapt-itt framework. springerplus, 3(1), 1-13. doi:10.1186/2193-1801-3-249 tettey, w. j. (2016). homosexuality, moral panic, and politicized homophobia in ghana: interrogating discourses of moral entrepreneurship in ghanaian media: homosexuality, moral panic, and politicized homophobia. communication, culture & critique, 9(1), 86-106. doi:10.1111/cccr.12132 transactional sex is associated with income level and psychosocial health problems among gay and bisexual men (gbm) in nigeria, africa. (2020). the journal of sex research, 1-7. doi:10.1080/00224499.2020.1854649 tweneboah, s., & kwame nkrumah university of science and technology. (2018). religion, international human rights standards, and the politicisation of homosexuality in ghana. african journal of gender and religion, 24(2) doi:10.14426/ajgr.v24i2.49 van loggerenberg, f., mlisana, k., williamson, c., auld, s. c., morris, l., gray, c. m., abdool karim, q., grober, a., barnabas, n., iriogbe, i., & abdool karim, s.s, for the caprisa 002 acute infection study team. (2008). establishing a cohort at high risk of hiv infection in south africa: challenges and experiences of the caprisa 002 acute infection study. plos one, 3(4), e1954 e1954. doi:10.1371/journal.pone.0001954 wilton, l., herbst, j. h., coury-doniger, p., painter, t. m., english, g., alvarez, m. e., scahill, m., robertson, m., lucas, b., johnson, w.d., & carey, j. w. (2009). efficacy of an hiv/sti prevention intervention for black men who have sex with men: findings from the many men, many voices (3mv) project. aids and behavior, 13(3), 532-544. doi:10.1007/s10461-009-9529-y wingwood, g. m., diclemente, r. j., stallworth, j., purcell, d. w., jean, r., villamizar, k., er, d.j., 12 ihtp, 1(1), 1-16, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 devarona, m., taveras, j., painter, t.m., lang, d.l., hardin, j.w., & ullah, e. (2011a). efficacy of a health educator-delivered hiv prevention intervention for latina women: a randomized controlled trial. american journal of public health (1971), 101(12), 2245-2252. doi:10.2105/ajph.2011.300340 wingood, g. m., & diclemente, r. j. (2008). the adapt-itt model: a novel method of adapting evidence-based hiv interventions. journal of acquired immune deficiency syndromes (1999), 47 suppl 1, the first national scientific meeting of the social and behavioral science research network (supplement 1), s40-s46. doi:10.1097/qai.0b013e3181605df1 wingwood, g. m., simpson-robinson, l., braxton, n. d., & rainford, j. l. (2011b). design of a faith based hiv intervention: successful collaboration between a university and a church. health promotion practice, 12(6), 823-831. doi:10.1177/1524839910372039 13 ihtp, 1(1), 1-16, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 table 1: adapt–itt phases, activities and modifications activities procedures/findings modifications/actions adapt-it phase one: assessment content • prior research • feedback from community organization on the need for a comprehensive sexual health and social intervention that targets not just sexual behavior but sexual identities and related risk capacity • assessment of the capacity of the organization • na • reviewed previous men’s study data and other studies on sexual health and hiv risk behavior or experiences among msm in ghana • msm in ghana have a disproportionate hiv prevalence rate compared to the general population. they have a higher risk of contracting new infections due to risky sexual behaviors • reports also show an existing hiv, same gender, and non-gender conforming stigma among msm and community. • msm in ghana expressed the need for capacity building on sexual health and sti • a special need for understanding gender and sexuality identities and related risks • assessed staffing, and knowledge on the subject matter, ability to reach the population, host the program, and to deliver the program. • the organization had the capabilities to implement the projects. as they have an existing staff body who were msm themselves and understood their lived experiences. adapt-it phase two: decision • formal and informal discussions between researchers and community based organizations on contents of the 3mv • many men, many voices chosen as the intervention to be adapted; although applicable, its contents portray the american msm experience hence the need for some modifications. • no modifications were made to the goals of 3mv; intervention to be adapted confirmed. adapt-it phase three: adaptation adaptation • ghana team training on 3mv • reviewed 3mv manual in conjunction with ghana team to identify content areas for modification. • two selected trainers traveled from ghana to the united states for training on the various components of the 3mv • adaptations needed to address the intervention name; tribalism; historical contexts related to slavery and slave trade; colonialism and religion; the increased need for discussions on bisexuality • content area alterations made to fit the ghana cultural setting. • focus on culture, ethnicity/tribalism, and religion. • incorporated tourism and history of ghana and colonial/slavery contexts • focus more on social issues such as law enforcement, violence, • emphasis on bisexuality due to the high presence of bisexuality in ghana adapt-it phase four: production 14 ihtp, 1(1), 1-16, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 • production of nyansapo manual and choosing of the host site • manual was created to fit the ghana context • assessment of sites to ensure their ability to deliver the intervention • the site chosen was suitable to implement the intervention as it was safe and far away from participants’ original communities. • no modifications adapt-it phase five: topical experts • topic experts were recruited for phase 5 participation • internal study team discussions • during the study, three experts were identified; they include hiv scholars and community-level practitioners who engage with msm • no modifications adapt-it phase 6: integration • integration • experts confirmed that the adapted nyansapo fit well with the 3mv goals and intent of the intervention • no modifications adapt-it phase 7: training • training • 3-day training for the project team was held with the facilitator and the lead investigator leading the topics. the team was taken through how to use recorders, ipad in collecting data from participants. they were also taught how to handle difficult participants and most importantly to remain focused and act professionally. • co-facilitators and assistances were trained by the trainers who underwent tots in denver • the study taking place in a retreat center for maximum concentration from participants • training of co-facilitators and assistance as part of the adaptation process. this was to ensure buy-in and engagement. participation of the pi to ensure the training was a success. • graduation and certification were included to add merit to the training • languages familiar to the ghanaian msm were incorporated to ensure reach to participants adapt-it phase 8: testing • pilot testing of the interven tion • staff debriefing sessions and post-intervention focus group discussions were conducted • hold the retreats away from typical participant distractions • some participants recommended increased opportunity for community building, such as sporting activities; however, others noted that a balance between intervention material and community-building is needed • some participants wanted to test for hiv immediately upon assessing their risk • outside interactions with a nurse (e.g., discussion hiv testing) and police (e.g. to address human rights) were helpful • no modifications were made at this point, but data were summarized to improve future delivery 15 ihtp, 1(1), 1-16, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 table 2: 3mv sessions and adaptations undertaken for implementation core intervention elements manual content adaptation 1) enhance self-esteem related to racial identity and sexual behavior. 2) educate clients about hiv risk and sensitize to personal risk. 3) educate clients about interactions between hiv and other sexually transmitted diseases and sensitize to personal risk. 4) develop risk reduction strategies. 5) build a menu of behavioral options for hiv and other std risk reduction, including those for individuals and those requiring partner involvement. 6) train in risk reduction behavioral skills. 7) enhance self-efficacy related to behavioral skills. 8) train in partner communication and negotiation. 9) provide social support and relapse prevention. • the program maintained all components except a minor alteration to core number 1, to focus on ethnic, and religious identities of participants and to highlight the impact of colonialism and religion and how it contributed to shaping the current anti-lgbtq • historical contexts and a field trip component associated with slavery and slave trade; colonialism and religion were initiated before the retreat to create the background for discussion • the name of the intervention was changed to nyansapo, meaning wisdom/streetwise in the ghanaian context the seven sessions manual content adaptation 1. black gay men and dual identity. the overall goal of session 1 is to increase clients’ understanding of how a unique combination of internal and external factors can affect the hiv-related behaviors of black gay men and contribute to disproportionately high rates of hiv and other stds and introduce clients to biomedical advances in hiv prevention. • in addition to discussing hiv and std among gay men, the nyansapo project also emphasized bisexuality and other men who have sex with men because many men in ghana who have sex with men also have sex with women 2. std/hiv prevention for black gay men—the roles and risks for tops and bottoms. one purpose of session 2 is to provide basic information about transmission, symptoms, testing, vaccines, and treatment of stds and how stds increase the chance of hiv infection for black msm. further information about how hiv, prep, pep, and hiv treatment work to reduce transmission will be discussed. a second purpose is to introduce the concept of tops and bottoms and discuss how sexual position affects the chance of getting an std and hiv. the session provides clients with the information they need to build their menu of options for std/hiv prevention in session 3. • in addition to the primary aim of the session, the risk associated with having sex with women was also discussed to ensure safe practices for those who have sex with both men and women 3. std/hiv risk assessment and prevention options. the purpose of session 3 is to understand all the factors the determine risk of getting hiv or another std and to discuss and explore std/hiv prevention and harm reduction options while increasing clients’ perception of their own risk and susceptibility to stds/hiv. • we maintained the content of this session 4. intentions to act and capacity for change. the purpose of session 4 is to help clients understand that behavior change often occurs in stages and that addressing • we maintained the content of this session 16 ihtp, 1(1), 1-16, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 ambivalence and barriers to change is the first step toward fewer risk behaviors or toward more health promotion behaviors. clients will identify a behavior they want to change and will develop a plan for changing that behavior. 5. relationship issues—partner selection, communication, and negotiation of roles for black gay men. the purpose of session 5 is to discuss different kinds of power and power dynamics clients have observed in intimate relationships while growing up, and how the roles of tops and bottoms and versatile are defined for black gay men in any type of intimate relationship, whether sexual or romantic. another purpose of session 5 is to discuss partner communication and negotiation. • here, the emphasis was placed on the ghanaian cultural setting of patriarchy and a discussion of gendered roles for men and women and then contextualizing it with expectations in same-sex relations and bisexual partners among the participants 6. social support and problem solving to maintain change. the purpose of session 6 is to build clients’ skills to use condoms, communicate, and negotiate with partners, and prevent and respond to relapse when it occurs. • we maintained the content of this session 7. building bridges and community. the purpose of session 7 is to provide clients with an opportunity to discuss their many men, many voices (3mv) experience and identify what resources they need to continue their behavior change option(s). • we maintained the content of this session abstract keywords introduction many men, many voices (3mv) the adapt-itt methods and results phase 1: assessment phase 2: decision phase 3: adaptation phase 4: production phases 5 and 6: topical experts and feedback integration phase 7: training phase 8: testing discussion references issn 2563-9269 29 “the little lights in this dark tunnel”: emotional support of nurses working in covid-19 acute care hospital environments jennifer lapum1, megan nguyen2, sannie lai3, julie mcshane3, suzanne fredericks1 1daphne cockwell school of nursing, ryerson university, ryerson university, toronto, ontario, canada; 2dalla lana school of public health, university of toronto, toronto, ontario, canada; 3toronto general hospital, university health network, toronto, ontario canada corresponding author: j. lapum (jlapum@ryerson.ca) abstract background: working on the frontlines of hospitals during the covid-19 pandemic has been challenging and distressing for nurses. the troublesome nature of these emotions have surfaced because of uncharted territory related to this virus, compromised work conditions, unfavourable patient outcomes, and the witnessing of suffering and loss. although there has been renewed emphasis on how to emotionally support nurses, the nature of support needed is somewhat unknown considering that healthcare professionals have not experienced a pandemic of this magnitude in their lifetime. we explored how nurses were emotionally supported and how they can be better supported while working in covid-19 acute care hospital environments. methods: in this narrative study, semistructured interviews were conducted with 20 registered nurses working in hospitals in the greater toronto area and working on units caring for covid-19+ patients. results: our findings reflected three main narrative themes. the organic emergence of support was a narrative theme that included camaraderie and emotion-focused coping strategies. intentional forms of support were a narrative theme that included mental health support, information support, and resource support. the social justice nature of support was a narrative theme that included advocacy and recognition and compensation. conclusion: these findings highlight the importance of how hospital and government leaders should employ a multifold approach in the provision of emotional support for nurses. some strategies relevant to clinical practice include demonstrating visible presence with regular rounding of units by leaders, and transparent communication about information and resources. other strategies are on-site psychological support and legitimate support of mental health sick days as well as lobbying governments for financial compensation for the risky work involved in being a frontline provider and appropriate provision of personal protective equipment. while emotionally supporting nurses, these types of resources can act as “little lights in this dark tunnel” of covid-19 and illuminate a path forward. keywords emotions; mental health; nursing; nurses; covid-19; psychosocial support; narrative funding source this work was supported by the fcs covid-19 rapid response research grant, ryerson university. background in march of 2020, covid-19 was declared a global pandemic (world health organization, 2020). despite the feelings of uncertainty and fear reverberating around the world (smith et al., 2020), nurses have been at the frontline caring for patients who test ihtp, 1(1), 29-43, spring 2021 cc by-nc-nd 4.0 positive as well as supporting their families during this formidable time (rosa et al., 2020). the acute care hospital environment has been uniquely challenging for nurses considering the dynamic nature of the state of science as well as the emotional trauma issn 2563-9269 30 experienced (lapum et al., 2020). this pandemic has highlighted the role of the nurse as indispensable to the functioning of the healthcare system (el-masri & roux, 2020), but also raised questions about how nurses are best supported. in this study, we explored how nurses were emotionally supported and how they can be better supported while working in covid19 environments in hospitals. hospital work environments during the pandemic have been demanding for healthcare professionals. in these environments, nurses are at the frontlines spending sustained periods of time with patients and deeply engaged in their emotional care as well as their families (lapum et al., 2020; rosa et al., 2020). they are working in compromised work environments (thorne, 2020) wherein their own personal safety is at risk (catania et al., 2020). this has included limited access to resources including personal protective equipment (ppe) and medical supplies and equipment (bagnasco et al., 2020; catania et al., 2020; gujral et al., 2020; rosa et al., 2020; sim, 2020; smith et al., 2020). additionally, the nature of transmission of covid-19 was unclear during the first wave creating a significant amount of uncertainty. as a result, frontline providers such as nurses were at highest risk for infection (sim, 2020). because many countries are not collating data, there is minimal information related to healthcare workers’ infection rates and deaths, but it has been suggested that hundreds of thousands of workplace infections have occurred, with hundreds of nurses dying (freer, in press; huang et al., 2020; international council of nurses, 2020; pan american health organization, 2020; sim, 2020; zeng et al., 2020). rising infection rates and the need for self-isolation have also resulted in increased workload and substandard nurse-patient ratios (sim, 2020; stokes-parish et al., 2020). these types of environments have had a significant emotional impact upon nurses. the emotional impact has been multifold for nurses working in these environments. the emerging literature has reflected feelings of uncertainty, fear, anger, helplessness, psychological distress, anxiety, and depression (bagnasco et al, 2020; iheduruanderson, 2020; labrague & de los santos; shreffler et al., 2020). nurses are experiencing intense moral distress when their own values concerning patientcentred care are at odds with covid-19 work environments that require rapid triage (rosa et al., 2020) as well as changes to care models, rationing of ihtp, 1(1), 29-43, spring 2021 cc by-nc-nd 4.0 resources, and sometimes limiting of contact with patients. because of situations of helplessness interwoven with death and loss of contact with family due to social restrictions, nurses are at risk for psychological and trauma-related symptoms over the long term (lapum et al, 2020; shahrour & dardas, 2020). existing research has indicated that the intensity and persistent emotions that nurses are experiencing are akin to post-traumatic stress disorder (blekas et al.; carmassi et al.; lapum et al., 2020). the impact of these emotional and traumatic experiences has led to feelings of isolation (iheduruanderson, 2020) and emotional and physical exhaustion (dykes & chu, 2020; gao et al., 2020; gujral et al., 2020; sagherian et al., 2020). there is renewed emphasis on how to emotionally support nurses through intensely traumatic experiences such as pandemics. the potential consequences of not supporting nurses during these times are well known and include compassion fatigue, burn-out, and intentions to leave the profession (gujral et al., 2020). leaders in healthcare environments need to collaborate on how to support nurses over the short and long term (bagnasco et al., 2020). however, first we need to better understand how nurses were emotionally supported and how better to support them moving forward. as underscored in this research, it is our hope that this support will offer “little lights in this dark tunnel” of covid-19 (participant quote). methods we based our study methodology on lieblich et al.’s (1998) narrative inquiry approach, which privileges the storied quality of human experience and understanding this experience through narrative accounts. specifically, we employed the categorical content and categorical form of narrative inquiry (lieblich et al., 1998). a categorical approach is focused on how components of participants’ stories can enhance understanding of a specific phenomenon (lieblich et al., 1998) such as nurses’ accounts of emotional support while working in covid-19 acute care hospital environments. this inquiry focus upon emotions is theoretically grounded in narrative. we draw upon kleres (2010) work that theorizes how emotions are “narrative in nature” (p. 188) and that the telling of a story and its components constitute these emotions. this is in align with our constructivist approach in which the issn 2563-9269 31 meaning of a narrative is co-constructed during the telling of the story. recruitment occurred from july to october 2020. we recruited registered nurses working in acute care hospitals located in the greater toronto area and working on units caring for covid-19+ patients. social media and listservs from selected hospital units were used to facilitate recruitment outreach using a convenience sampling method. we conducted individual, semi-structured interviews through a combination of audio and/or video-enabled zoom calls. interview questions were broad to invite storytelling, and included items such as: what helped support you in situations that affected you the most emotionally? how do you think you could have been better supported in these situations? interviews were recorded and transcribed verbatim. using a group approach, we analyzed data based on lieblich and colleagues’ (1998) method of categorical content and form analysis. therefore, our analytic focus was on the content of nurses’ stories (i.e., what they shared in terms of the context, what happened, and who was involved) as well as how their narratives were recounted with regard to form and nonlexical components of speech (e.g. vocal intonation, tone, pitch etc.) (lieblich et al., 1998).. this process involved individually reading the transcript to get an overall sense of the narrative account followed by a group reading of the transcript where we began to identify sections of text that were relevant to the research question. in line with lieblich’s approach, when identifying sections of text, we examined both the content and the form which informed our analytical discussions in terms of how we coded these sections of text and then how related codes were combined into several narrative themes. the team collaboratively established the narrative coding structure using an ongoing iterative and dialogical approach. it is these narrative themes that become the organizing structure to represent the study’s findings. ethics consideration we obtained research ethics board approval from the initial hospital recruitment site and from the principal investigators’ university. free and informed consent was provided before participation in the study. ihtp, 1(1), 29-43, spring 2021 cc by-nc-nd 4.0 results this research included 20 registered nurses from six different hospital institutions in which all nurses were working with covid-19+ patients and all but one nurse was working on covid-19 designated units specifically. sixteen were considered bedside nurses and four were in nurse leadership positions on these units. we specifically do not identify the leadership positions to protect participants’ identity. seventeen nurses were female and three were male. they participated in study interviews that were up to 90 minutes in length. three themes were identified including: the organic emergence of support, intentional forms of support, and the social justice nature of support. organic emergence of support there was an organic emergence of emotional support that was not necessarily formalized. this type of support included camaraderie and emotionfocused coping. camaraderie camaraderie was a form of support that appeared as a spirit of community and the sharing of emotional experiences which organically emerged among colleagues during the pandemic. several nurses remarked “we're all in this together” (p05, p08) and explained how they supported one another: “we looked after each other … people came together in a way that i haven’t seen. everybody supporting each other … what do you need? what can i do for you?” (p04). another nurse explained feeling “safe” because of “having your colleagues support each other and making sure we're doing our [ppe] checks” (p11). the emotional nature of the pandemic brought about a camaraderie that was more than the norm. one nurse’s narrative reflected the importance of “support[ing] each other emotionally … so that we're not burnt out at the end of this. i'm taking care of my colleague and my colleague has my back as a nurse. that was really important” (p11). the linguistic phrasing “has my back” suggests that nurses were willing to support one another no matter how difficult the situation. and this support was described as essential “to get the job done. and make sure our patients are taken care of and go above and beyond” (p27). the emotional support embedded in the feeling of camaraderie was evident. one nurse issn 2563-9269 32 described how nurses were “utterly distraught, just breaking down crying … as a group we all tried to be as supportive and be there for one another” (p05). the support that nurses gave and received was also related to the sharing of a unique experience. nurses’ narratives reflected how the camaraderie transpired because their experiences were akin to one another. nurses commented that their colleagues “understand” (p02) because “[we are] living the same experience … [and] share the same feelings” (p06) and as a result, they are “the only people who kind of get this … they’re kind of like my sisters and brothers” (p03). the familial reference to describe their colleagues highlighted the intimacy of the support. nurses described how “colleagues were the biggest help … we were able to vent to each other and totally understand and validate how we're feeling” (p06). this sharing of experiences led to mutual understanding and united nurses in a way that transcended their differences: there were times where everyone was just so emotionally exhausted but also scared that team members would come together and pray and people would join that prayer, whether they believed in whatever religion … it was a way to bond … talking about our emotional struggles and what we were all going through and how we were going to get through it. if we talked about home stresses, everybody understood. if we talked about a heartbreaking patient story, everybody understood, because we were all going through it together (p27). the “sharing of stories” was a positive support for nurses and described as “therapeutic, allows us to decompress, voice our concerns, and move on” (p11). one nurse’s excerpt highlighted how this type of support enhanced their capacity to engage in emotional management: “they know what's going on,and can help me understand my emotions and kind of get through it, really helpful” (p17). it was commonly noted that camaraderie not only brought them “closer as a team” (p28), but they also found it “reassuring … you’re not alone” (p06) and it “validated” their feelings as they realized that “i wasn't the only one feeling all that” (p28). the phrasing “all that” suggests that there was a considerable emotional burden that nurses were attempting to cope with. in addition to camaraderie, nurses’ narratives reflected emotion-focused coping. ihtp, 1(1), 29-43, spring 2021 cc by-nc-nd 4.0 emotion-focused coping another form of support that organically emerged is emotion-focused coping which refers to strategies focused on regulating emotions. because of the isolating nature of physical distancing, nurses referred to the importance of “stay[ing] connected” (p15) with others. they commonly described “checking” in on family and friends (p15) and noted that “spending time with family makes this process a whole lot less isolating” (p11). the support they received from family and friends was an important component of their coping. one nurse commented “that was a big emotional part, having them care for me … i really appreciated it” (p08). another nurse said “when i could be around my husband and kids like i know that i would feel a whole lot better” (p03). another nurse described how their unit received letters from children in school about how “we are heroes … everyday we would feature a letter … which was really nice” (p04). the support from family, friends, and society facilitated nurses’ emotionfocused coping. other forms of emotion-focused coping included mechanisms that could become problematic as well as positive strategies. one nurse commented on their own “way of coping … every night, i go home, i need a drink for this reason. i need a drink for that reason” (p04). others noted “stress eating” (p05, p22) and “pandemic weight” gain (p22). however, narratives also reflected positive emotion-focused coping referring to one’s perspective and engaging in activities and nature. highlighting the importance of perspective, one nurse remarked “there's always light at the end of the tunnel. no matter how long a tunnel might be, just have to focus on one step at a time” (p12). narratives suggested that nurses trained themselves to feel an emotion and then release it: “trying not to dwell, taking my moment to be scared and then to let that go because it wasn't helpful … take a deep breath, go forward” (p25). another nurse reflected upon the role of faith in emotion-focused support: “my faith … provides an extra layer of emotional armor” (p20). nurses also referred to “going outside … enjoy the weather” as a way to cope”(p11). they indicated that this helped because it allowed them “to go back to work knowing that i've decompressed. balance between work life, and that personal time to take care of yourself” (p11). another participant reflected on the importance of self care: “i found little things that clear my mind and get my mind issn 2563-9269 33 off work, so that i can feel like a person again … i had to find ways to feel whole again” (p05). this excerpt suggests that a nurse’s personhood is diminished during the pandemic because they become so focused on work. it was common for nurses to emphasize the usefulness of “disconnect[ing] from work” (p16) and “actively distracting” themselves “from thinking about the pandemic” (p24). participants referred to many activities such as “going for runs”, “reading books” (p06), and “cooking” (p01) and how these activities were “good outlets” (p06) and “important to handle all those emotions” (p01). the organic forms of support were also complemented by intentional forms of support. intentional forms of support there were intentional forms of support that were formalized in the hospital setting including mental health support, informational support, and resource support. mental health support mental health support referred to structured support provided by hospitals. it was noted that hospital leaders reminded nurses of counselling “resources” (p16), “hotlines”, and “therapists” to access “if you are dealing with emotional and psychological stress” (p12). their narratives reflected that having those “resources in place as a security in case you do need it” (p12) and “having that constant support always telling us that they're there for us, made me feel better.” resources varied from hospital to hospital, but one nurse commented that they “had a person come into the unit … [with] dedicated time slots for people to see her” (p04). another nurse remarked: “i applaud my organization for the supports they set up. they had psychologists and psychiatrists available … a quiet place … just for the quietness” (p28). for those who did reach out for help, they indicated that it was “helpful … to vent” (p16) and “speak with a social worker … to cope with the stressors that i was dealing with at work … helped me identify ways to destress” (p27). however, there seemed to be resistance in reaching out for help. although most nurses recognized that it would have been “beneficial” and “good for mental health” (p05, p06) to access supports, they almost always noted they “never reached out” (p06). one nurse described it as “an internal battle” in terms of their ihtp, 1(1), 29-43, spring 2021 cc by-nc-nd 4.0 own vulnerability as a barrier, explaining “accepting that i'm vulnerable. i don't like accepting that … if i addressed it, i would know that it is an issue for me. so, i ignored it which is not the best way to deal” (p05). nurses described both the work involved in reaching out and their own assumption that it would be futile: “comes down to the effort of reaching out to having a good therapist … i made the assumption that they're not going to be able to change my situation. all they can really do is lend an ear” (p06). another nurse referred to almost calling but noted “it never seemed it would make a difference. i felt i knew the questions that they would ask and the things that they would tell me to do” (p25). although nurses rarely described reaching out for support, one nurse had a revelation during the interview about the benefits of talk therapy: i'm accumulating that stress and anxiety within me. and then by me not talking about, it is taking a toll on me. i’m actually feeling much better now that i'm actually sharing this with you. it's actually my first time sharing my emotions and the effects of this covid-19 with someone, i thank you for listening … this is therapeutic for me (p15). although the study interview was not a mental health intervention, it appeared there was an element of talk therapy that emerged for this nurse. narratives reflected limited time to access mental health resources as well as the nature of timeliness and ease of accessing these supports. although emails were sent out with links to wellness and mental health programs, it was noted that “staff didn’t have time to use” the support offered (p01) or were too “drained” (p08) to participate. one nurse leader commented that staff “needed a lot of emotional support” and having “trained” individuals “on site” would have been “important” (p01). it was clear that support needed to be offered in a timely fashion at the moment when nurses were struggling. although management’s availability during emotionally difficult situations varied, one nurse noted “they weren't aware of what was happening” and “if they were around and they saw, i would appreciate being pulled aside and asked if i was okay … allowing me to talk things out … it’s comforting” (p17). the idea of having access to timely support was noted by another nurse who said “a debrief” after someone dies would be helpful (p03). in the covid19 context, “when somebody dies you just wrap the issn 2563-9269 34 body and move on to the next person” (p03). having trained counsellors on site was emphasized as important: having a person who knows how to tease out people's emotions … identify, you know what, you need this type of support … that should be part of that code team, instead of having us calling and seeking that help. … having someone constantly available on the unit and dedicated for people's mental health (p04). another participant’s comment reflected that readily accessible support was needed as opposed to “posters around the unit” with numbers to “call if you need help”, this nurse elaborated: maybe it's our own reluctance, i don't know anyone who's called. most of my colleagues are struggling … a couple have been suicidal … i've been anxious, but i've never felt like i wanted to hurt myself. but, i don't think there's been a lot of discussion, even (p03). it was clearly noted that on site mental health supports were essential to nurses. nurses’ narratives reflected that the type of mental support and how it was offered could be improved. for some, it was a matter of implementing “formal check-ins … somebody saying, are you okay?” so that nurses felt “cared for” (p03). it was also suggested that “giving space for how we’re feeling” would have been important such as use of a virtual “message board … where you could share and say, i'm really struggling … because there really is no time at work to talk about it unless you reach out on your off hours” (p03). another nurse remarked on the limitation of daily huddles and management’s role: they did ask how everyone's doing … i just felt like it wasn't an environment to allow us to speak how we were truly feeling … having more one-on-one with our management to see how we were doing or something more intimate where you can express it (p05). additionally, nurses referred to the need for more formal support for mental health and well being: “we needed professional counseling from a psychologist or psychiatrist” (p30) and “somebody who actually can help you work through anxieties and fears … [and ihtp, 1(1), 29-43, spring 2021 cc by-nc-nd 4.0 access to someone who] we didn’t have to pay out-ofpocket for” (p02). in moving forth with difficult times in healthcare, such as pandemics, there was the sense that institutions needed to recognize and respond to nurses’ need for mental health recovery. one nurse indicated that time-off was not being approved because it was an emergency period, but this was when “it was necessitated because of the increased stress, just to have like a recovery period” (p26). another nurse noted being “worried about what we do as an organization” to support “mental health” because nurses are experiencing “burnout” (p20). this nurse elaborated about the need for institutions to formally recognize “mental health sick days” as legitimate: when staff say, i stopped caring, i don't even care anymore. i was like, that's called compassion fatigue. you are so tired. take the sick day … don't say that in front of the managers because there are repercussions, which means as an organization, we don't support, … when you're mentally struggling, are you not sick? (p20). intentional support for mental health was important to nurses as well as informational support. informational support flow of informational support varied depending on the institution and situation. although there were changes “daily, sometimes hourly, there was policy behind it” (p27). they explained that changes were being “led by good leaders … we got frequent updates, whether it was emails, huddles with our manager, that helped with an organized aspect of the chaos” (p27). as reflected in this excerpt, proper flow of information brought an orderliness to what was perceived as chaotic in the early days of covid-19. however, some nurses were “frustrated because of lack of information” (p28) and felt their “input” should have been sought (p17). another nurse commented on the importance of “constant communication … knowledge of what’s going on” to support them “to be resilient” (p11). one nurse leader described distributing “information … [in order] to get people to be malleable and adapt to changes” (p01). it was clear that proper flow of information emotionally supported nurses’ resilience. at the start of the issn 2563-9269 35 pandemic, nurses “had lots of questions” about safe provision of care: everyone was holding a gun to our manager, we want answers … there came a point where instead of trying to argue … you know what, we are doing it … so let's try to communicate more often … what the plan is, what the uncertainties are. having that communication allowed us to work as a unit to take care of patients (p12). one nurse leader addressed staff’s concerns “with evidence. printing out research articles, highlighting results … being honest, transparent” (p01). information transparency was underscored as vital to emotionally supporting nurses. one nurse noted that “open forums” with hospital leaders allowed nurses “to ask questions … clarify concerns … helps with uncertainty” (p15). it was indicated that some hospitals provided daily updates: “how many covid positive patients, how many people passed away, how many staff got covid ... how much ppe’s left … that was the biggest thing, it helped” (p01). although transparency was important, the constant flow of information was problematic in some ways. information overload was challenging in terms of the flow of information. one nurse leader commented: “the hospital wants new things to be implemented to keep everybody safe, but they didn't understand there was information overload” (p01). this nurse elaborated that was “very difficult to filter through hundreds of pages of policies, summarize it, and disseminate it to staff in effective ways … nobody has time to read. their expectation of nurses was really high” (p01). frontline nurses were fully engrossed in caring for patients and families, and then also expected to read about all the changes. one nurse noted it was “hard to cope with the amount of changes … every day we had huddles on how policies are being changed, standards of practice are being changed, infection control is being changed … it becomes very stressful to deal” (p05). it also appeared that being an agency nurse added a layer of complexity to responding to the changing information: “things were changing so quickly, dayto-day, and i don't have consistency of knowing the staff, the managers … there was lots of movement of like materials and i just felt out of sorts, in every unit” (p24). in relation to covid-19, they also elaborated that their agency “gave no training … i felt very isolated” (p24). in addition to quantity, there was also ihtp, 1(1), 29-43, spring 2021 cc by-nc-nd 4.0 diverse information that affected how they were supported emotionally. nurses’ narratives reflected that different and sometimes contradicting information influenced the flow of information support: “hospital policies were changing by the hour, we were getting a lot of different and changing information all the time” (p22). they elaborated: it got very confusing … frustrating, one person is telling you something, you're getting emails about something else … it's conflicting when you have supervisors … who you're looking to for directions and they cannot come to a consensus (p22). although the changing information was difficult, the contradictory nature was more challenging: “every day you'd hear something new” (p06) and they referred to “the most unsettling part” as “the discrepancies between organizations. you have cdc recommendations, who’s … anxiety was an all time high … then, it's not until like the next day where we're acting on it” (p06). specific to the flow of information, some nurses described a “break in communication” in terms of the managers, and they found themselves questioning “what is the right practice?” (p11). effective exchange of information or lack thereof prompted nurses to question why “upper management” had not learned from “sars and other pandemics” (p08). they elaborated: [this] created a distrust between frontline workers and management … if they recommended a certain way of protecting ourselves, … more kind of an evidence-based approach. that would reassure us … we don't know where they're getting the information from. we don’t know how they're building policies, it was very uncertain (p08). nurses’ narratives reflected how more transparency would have been appreciated about the reasoning behind decisions. as suggested in nurses’ narratives, information transparency would also build trust and enhance feelings of support. one nurse commented feeling “supported by managers and other times, not as much” (p17). they explained: “there were certain things that i would find out from my colleagues, rather than my manager … almost made us feel unsafe going issn 2563-9269 36 into a situation knowing we might not have the entire picture.” a lot of feelings of trust/mistrust surrounded lack of transparency about ppe: “we weren't able to find them [ppe] anymore. management was taking them down. they weren't telling us why … they never had the conversation with us to tell us and explain why” (p22). there were mixed feelings about management, stating: felt like we were being lied to … they kept saying, “we have a lot of ppe,” but we were looking at our supplies and we were like, it doesn't look like we do. they kept covering things up in terms of where they were keeping the n95s. it's not fair. we're the ones that are wearing it so if we don't have the supplies, we want to hear it from you … just felt that trust was being affected but at the same time that stress did impact our management … i could see it emotionally, our manager broke down in tears because of the exposure of covid to one of the nurses (p05). one nurse leader explicated the mistrust felt by nurses in a context of dynamic information: “a lot of suspicion and mistrust towards the organization, in a context when we did not have enough ppe, did not know the evidence, was it droplet or airborne” (p30). in referring to new policies, they explained there was “anxious trepidation and staff questioned when educators came … this is going to be how we manage a code blue for people who have respiratory symptoms.” it was also clear that a lot of the information support was related to resource support. resource support resource support referred to access to supplies in ways that positioned nurses to feel they were safely functioning as a unit. their narratives clearly reflected how they were concerned about the lack of resources to protect themselves: “[we] didn’t feel like we had adequate resources … we felt we were more at risk” (p03). they explained that having “an adequate supply of ppe … would have diminished some of the fear” (p03). another nurse commented that having resources “readily available” was important “so that people know … their institution, they all got my back … instead of us asking for it, and sometimes begging for ppe” (p04). one nurse commented on the emotional response to not having sufficient resources: [with] so many people getting sick and dying, people needing ventilators, there's only x number of critical ihtp, 1(1), 29-43, spring 2021 cc by-nc-nd 4.0 care beds. there's only x number of ventilators. with the amount of people that can get sick, there's obviously not enough resources … it's a very daunting idea of how the scale can tip. there'll be days going to work or coming home from work, i’ll just be driving, and breaking down into tears because of fear (p22). it was common for nurses to note how “we were promised” after sars to never be in this place again in terms of lack of ppe (p03). nurses often exclaimed “nothing was learned from sars. that's more of provincial planning as opposed to specific to my organization. if there was more preparedness regarding healthcare as a whole within the province and canada, that would have been much better.” (p27). it was also noted that it was not just about insufficient ppe, but also improper practices being advocated related to its use. the degree of feeling emotionally supported was influenced by the continued inappropriate mask policy use that is not supported by evidence: “the mask policy [was] only having two masks … these are single use masks, and knowing that that's a financial decision by the hospitals and not one that's backed in science is troubling” (p24). some nurses described “we didn’t have much resources, less gowns, less masks” (p16) while others noted “our unit was not short on resources, we didn't have to reuse our n-95s longer than that day” (p22). this last nurse’s statement appears contradictory considering that they were referring to sufficient resources despite wearing a single-use mask all day. the restriction of access to ppe became an issue in terms of resource support: they locked up the n-95s … saying, you could only use one per shift. you have to write out a reason why you took it out because we're going to audit it … why do i have to provide a reason to protect myself … people were saying “oh, you guys chose to do this job, you have to deal with whatever happens.” i chose to do this job, because i was passionate about it. and i thought the place that i worked in would support me better. i didn't sign up to work with less ppe (p16). it was clear that many nurses “didn't feel like they [the hospital] prioritized first contact persons who are actually caring for covid patients” (p16). this nurse elaborated: issn 2563-9269 37 i felt like they were thinking, how can we save resources so we can better spread it out in the future? … our manager came and said, this is an article that says you can use your n-95 for two days. we were like, what? use the same mask that came in contact with other things? it didn't feel safe. their logic didn't make sense. we had a bin in the back of the hospital, throw away your n-95 here … they're going to reuse it? we're going to get someone else's mask that they washed or disinfected … made me feel more stressed. who’s making these calls? are they having nurses on decision-making teams? are they having experienced people making these decisions? it didn't seem fair. it made it more upsetting, it made me not want to come to work (p16). the inappropriate massaging of evidence to reconcile the ppe shortages failed to reflect the reality of risk nurses were exposed to, significantly undermining the value of their work. nurses’ accounts of resource support also revealed the social justice nature of support. social justice nature of support the social justice nature of support related to the emotional experience involves the fair, compassionate, and equal rights of nurses. the social justice nature included advocacy and recognition and compensation. advocacy advocacy involved speaking up for self and interceding on behalf of others. one nurse described their manager as a “nurse’s nurse … we know they have our back … our manager wants to appease us first and then deal with upper management” (p02). although it is important to note that study participants came from different units and hospitals and thus, the feeling of support and advocacy varied: “i wouldn't say i'm happy to work for this hospital because i didn't feel like they had our backs through this whole thing and it's sad … they didn't make us feel safe” (p16). this nurse explained that they would have felt more supported if the hospital said “you signed up to work with us, we have your backs, here are your resources. if you need anything, contact us. i never felt that support.” (p16). another nurse indicated having a manager who “was fully supportive of us using our ppe the way we thought fit. she's been ihtp, 1(1), 29-43, spring 2021 cc by-nc-nd 4.0 hugely supportive, and that means everything to us. i don't think we could have gotten through without this manager” (p02). another nurse referred to their manager “fight[ing] for us to be treated right within the hospital and for us to receive proper ppe, and make sure that we're doing okay in our role … i felt really well supported” (p17). in addition to ppe, it was also noted how nurse leaders advocated for human resource support: “we have a resource nurse so we always have somebody to do admissions. that has increased morale … we feel a little bit more supported … our manager advocated, like pushed for that” (p03). as reflected in nurses’ narratives, the role of advocacy among managers really acted to emotionally support nurses. the nurse leaders’ narratives demonstrated ways they advocated for their staff nurses. in referring to nurses that did not typically work on the unit, one leader noted that “we made sure that the nurse was supported … once their shift was done … i emailed their manager to say … can you reach out to this person to make sure they’re emotionally okay?” (p04). another nurse leader advocated and arranged for information sessions with upper management: staff are very upset because they feel like [hospital leadership] are not even on these units. and so how are you supposed to make these decisions? you don't even assess or get feedback … we had the ipac doctor come. it was like a roundtable where nurses asked all types of questions. why do we need n-95 for this and not that? so every single question they could think of, they asked, and they addressed it. then we had the vp of nursing come and answer a bunch of really tough questions from staff. it was really effective, but they only did it once. my suggestion was having people who make the really tough decisions, come and be candid, be honest (p01). in addition to advocacy, the social justice nature of emotional support involved recognition of nurses. recognition and compensation recognition involves the active acknowledgement of nurses or lack of acknowledgement as something valid in the context of hospital leadership. one nurse explained that as a result of covid-19, it appeared that “society appreciated healthcare more … and the importance of nursing” (p01). another nurse issn 2563-9269 38 elaborated upon how this recognition emotionally supported them and acted as “the little lights in this dark tunnel”: we were called healthcare heroes and we were quick to be called superheroes … that kind of reinforced the fact that we were important in this fight … community support that we got was very helpful. like, not having to wait for groceries, on the one day off that i have that week, after working 70 hours because we had to pick up over time because we were so short. like those kinds of things helped, and helped us survive (p27). it was also noted how the emotional impact was acknowledged by leaders. when their patient died, one nurse recalled that their charge nurse was “supportive” and told them to: “step away from the unit, take a break for yourself. that helped me understand that i don't have to put my emotions away … i can just let it be, and focus on myself” (p12). one nurse leader noted that “it takes listening to their [nurses’] feelings, acknowledging that they’re scared” (p01) and making sure “we recognize and acknowledge the staff so that they don’t feel abandoned” (p04). nurses’ narratives reflected several ways where hospital leadership could have better acknowledged the work that nurses were doing. one nurse commented on the importance of the “visibility … of senior leadership” visiting the nurses on “the frontlines” to “build up morale”: if our vp would come to the units once a week to simply say, you guys are doing a great job and we may not have all the answers, but this is what we're doing to get them … face-to-face definitely helps people cope emotionally and is a good resource (p30). another nurse commented that acknowledgement from the senior hospital leaders was “lacking” (p04). this nurse elaborated: why can't we have our directors, our vps, ceos come in and acknowledge … from a commitment perspective, if you think of the long-term and if you wanted people to stay in the hospital and give their best. … it's like a slap in the face, … you didn't even thank us, visit us … and people don't even know now, like it's going to be months from now, people won't ihtp, 1(1), 29-43, spring 2021 cc by-nc-nd 4.0 even know that this unit, and these nurses cared for covid patients (p04). although senior leadership may have avoided visiting staff because of concerns about crosscontamination between units, it was clear that some form of acknowledgement of the commitment of these nurses would have had an influential shortand long-term impact. a lack of recognition from the government was generally reflected in narratives. although there were expressions of gratitude from government leaders, one nurse remarked “talk about the hypocrisy of being called healthcare heroes … people are running out of ppe” (p26). another nurse noted “we’re a dime a dozen … if they cared … we wouldn't have to sign out n-95s every time we use one. it's disgusting and it’s just exhausting, like you're not worthy” (p02). an important demonstration of recognition is that nursing “needs to be valued financially” (p24). one nurse noted that provincial pandemic pay “pushed us all to work harder and felt us all to be recognized” (p27). however, the general sentiment around pandemic pay was quite negative. one nurse said, “they want to save healthcare money on the nurse’s back, it's always been that way. and i'm tired of it … makes me want to leave the profession” (p02). the impact of nurses not being acknowledged with appropriate pandemic pay is summed up by one nurse: it's all good for the government, politically to praise us, bang some pans or whatever the heck they want. but when it comes down to the meat of it, when our government [limits pandemic pay] … it tells me that they don't care about nurses, that what they're saying to the general public in terms of how we're heroes … it's bullshit … makes me very angry. you feel like, why am i doing this? very disheartening … that is what put us over the edge, the fact that we are completely and utterly not valued. to be given a contract that reflects the seriousness of the things that we deal with, would have been huge … we're risking everything. so what could have been done? pay us what we're worth (p02). the impact of acknowledging nurses for their commitment and work was highlighted by one nurse: “[it] would also make people a bit more resilient and more adaptable” (p04) during a time that not only issn 2563-9269 39 needed nurses, but needed nurses who were emotionally supported. discussion in this study, we explored how nurses were emotionally supported and how they can be better supported while working in covid-19 acute care hospital environments. although there is no panacea for emotional support of nurses working in these environments, an important starting point is to provide light to illuminate a path forward. our study findings indicate that there was a deep gratitude for the many “little lights in this dark tunnel” that supported nurses during these emotional and traumatic experiences. the implications of these findings suggest a multifold approach is needed to support nurses including prompt and appropriate interventions. this support includes nurturing organic forms of support, enhancing intentional forms of support, and further activating the social justice nature of support. in the early days of a pandemic, such as covid-19, it is essential to systematize a responsive plan that implements intentional forms of both information and resource support. the findings from our study highlight how transparency and flow of information act to emotionally support nurses’ resilience. our research expands on rosa et al. (2020) who indicated that transparent communication was important to assuage nurses’ fears. part of transparency is ensuring honest communication in which resource support is evidence informed and nurses have access to appropriate ppe – and this does not mean two masks per shift. like prestia (2020) noted, it is important to provide truthful and timely information particularly during difficult times such as when there is a shortage of ppe. our study findings indicate that transparency and honesty in communication surrounding information and resource support is key. we would be remiss in not discussing the social justice nature of support in terms of the importance of advocacy and recognition during emotionally-laden situations such as covid-19. our study findings indicate that recognition of nurses’ dedication to the frontlines was valued and nurse leaders played an instrumental role in this type of emotional support. others have highlighted the important role of courage and advocacy among nurse leaders so that those at the frontline are supported (daly et al., 2020; ihtp, 1(1), 29-43, spring 2021 cc by-nc-nd 4.0 markey et al., 2020). however, our work highlights how this recognition also needs to include advocacy and action so that nurses’ risky work is appropriately compensated. as others have found, nurses are the ones at the frontline who are most at risk for infection, exposed to distressing patient and family suffering, and experiencing a trauma that is described as some as immeasurable (rosa et al., 2020). our research highlights how authentic recognition involves advocacy as well as the presence of leadership. the presence of leadership in its many forms is vital to help nurses feel supported and navigate their emotions during emotionally-charged times such as the covid-19 pandemic. similar to raderstorf and colleagues (2020), we found that maximizing physical presence of leadership on covid-19 units was vital so that recognition of nurses’ work, their emotions, and connecting with them was optimized. our work aligns with rosa et al. (2020) noting that regular rounding by nurse and hospital leaders ensures that nurses feel seen, validated, and also provides opportunity for their concerns to be articulated and addressed. although this physical presence may sometimes be restricted, consistent communication and information and resource transparency becomes even more important during these times. as bookeybassett (2021) and shahrour and dundas (2020) noted, it is important that leaders are accessible to nursing staff. similar to others, we also found that this presence of leadership is linked with advocacy for personal safety measures as paramount (daly et al., 2020; shahrour & dardas, 2020). the active presence of leaders provides opportunities for nurses to be supported in terms of their resilience and ability to thrive in their daily work (daly et al., 2020). additionally, there is a positive ripple effect of effective leadership and support that flows from leader to staff and beyond (prestia, 2020). our study findings reflect how this ripple effect can also be reciprocal in which the resilience of all of those involved, particularly in emotionally difficult situations such as those caused by the pandemic, is nurtured. the findings of our study reflect how organic forms of support also act to emotionally support nurses. the unique emotional support from other nurses in the form of camaraderie was notably meaningful to nurses particularly when they were lacking support from leadership. the sharing of these unparalleled issn 2563-9269 40 experiences validated their feelings and lessened the sense of isolation. similar to other research, we found that nurses felt like they were in it together in terms of fighting this pandemic as a team (catania et al., 2020). in addition to camaraderie, emotion-focused coping is valuable to the support of nurses. our study highlights that engaging in activities that create “good” feelings and counteract some of the difficult feelings is important to emotionally support nurses. others have found that emotion-focused coping such as humour and religious activities can have a positive affect on healthcare providers (phua et al., 2005). in fact, our research highlights how prayer brought nurses together at the start of a shift no matter what their religion or if they were religious. our research also underscores the importance of outdoor activities as part of emotion-focused coping. this may be of special relevance with covid-19 considering its isolating nature across the globe. access to appropriate and comprehensive forms of mental health resources are fundamental to the emotional support of nurses. similar to our research, it has been commonly noted that psychological support plays an important role in the therapeutic support of nurses (gao et al., 2020; shahrour & dardas, 2020; viswanathan et al., 2020). however, the need for psychological support is not something new as others have underscored its importance particularly since the sars epidemic (smith et al., 2020). researchers have found, the psychological distress and trauma that nurses are experiencing is intensified for frontline providers during covid-19 (jackson et al., 2020; lai et al., 2020; labrague & de los santos, 2020; lapum et al, 2020; reger et al., 2020). in our study, nurse leaders specifically noted how frontline staff were struggling and they recognize that they should not be the ones attempting to provide counselling. like others, we found that institutions must engage in the provision of psychosocial support of nurses to reduce stress and support their well-being (catania et al., 2020; shahrour & dardas, 2020). rosa and colleagues (2020) noted that “healing from the effects of the pandemic can't rest on the shoulders of those at the frontlines” (p. 33). this statement closely aligns with our findings in that many times nurses are suffering in silence and often will not reach out for help. this finding is critical in how institutions must actively reach out to nurses in terms of providing on-site psychological support and possibly require formalized one-on-one check-ins to assess whether additional ihtp, 1(1), 29-43, spring 2021 cc by-nc-nd 4.0 support is needed. this type of support can help nurture resilience particularly during high-demand situations such as covid-19 (henshall et al., 2020) and ensure that nurses know that their well-being matters (rosser et al., 2020). conclusion there was deep gratitude shown for what could be described as the many little lights in a dark tunnel that acted to emotionally support nurses during covid19. however, it was also troubling and traumatic particularly during the times when these lights did not seem to flicker when nurses were emotionally drained and did not feel supported and as such felt isolated. and there were times when these lights shined a little brighter helping to illuminate the path forward and support nurses’ emotional journey and resilience. in moving forth, strong beams of light are needed during some of the darkest times of pandemics. and it is clear that nurse leaders, hospital leaders, and government leaders as well as frontline nurses themselves can be instrumental in the provision of this emotional support. references bagnasco, a., zanini, m., hayter, m., catania, g., & sasso, l. (2020). covid 19—a message from italy to the global nursing community. journal of advanced nursing, 76(9),2212-2214. https://doi.org/10.1111/jan.14407 blekas, a., voitsidis, p., athanasiadou, m., parlapani, e., chatzigeorgiou, a., skoupra, m., syngelakis, m., holeva, v., & diakogiannis, i. (2020). covid-19: ptsd symptoms in greek health care professionals. psychological trauma: theory, research, practice and policy, 12(7),812-819. https://doi.org/10.1037/tra0000914 bookey-bassett, s., purdy, n., van deursen, a. (2021). safeguarding and inspiring inpatient nurse managers’ dual roles during covid-19. canadian journal of nurse leaders. 33(4), 20-28. canadian institute for health information (2020, september). covid-19 cases and deaths among health care workers in canada. https://www.cihi.ca/en/covid-19-cases-anddeaths-among-health-care-workers-incanada https://doi.org/10.1111/jan.14407 ihtp, 1(1), 29-43, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 41 carmassi, c., foghi, c., dell’oste, v., cordone, a., bertelloni, c., bui, e., & dell’osso, l. (2020, epub). ptsd symptoms in healthcare workers facing the three coronavirus outbreaks: what can we expect after the covid-19 pandemic. psychiatry research, 292, 1-10. https://doi.org/10.1016/j.psychres.2020.11 3312 catania, g., zanini, m., hayter, m., timmins, f., dasso, n., ottonello, g., aleo, g., sasso, l., & bagnasco, a. (2020, early view). lessons from italian front‐line nurses' experiences during the covid‐19 pandemic: a qualitative descriptive study. journal of nursing management, 1-8. https://doi.org/10.1111/jonm.13194 daly, j., jackson, d., anders, r., & davidson, p. (2020). who speaks for nursing? covid‐19 highlighting gaps in leadership. journal of clinical nursing, 29(15-16), 2751-2752. https://doi.org/10.1111/jocn.15305. dykes, s., & chu, c. (2020). now more than ever, nurses need to be involved in technology design: lessons from the covid-19 pandemic. journal of clinical nursing, https://doi.org/10.1111/jocn.15581 el-masri, m., & roux, g. (2020). can covid-19 mark the rediscovery of nursing. canadian journal of nursing research, 52(3),174-175. https://doi.org/10.1177/084456212092158 3 freer, j. (in press). selfless sacrifice or failed by the state? remembering nurses who have died from covid-19. international journal of nursing studies. https://doi.org/10.1016/j.ijnurstu.2020.103 736 gao, x., jiang, l., hu, y., li, l., & hou, l. (2020). nurses’ experiences regarding shift patterns in isolation wards during the covid‐19 pandemic in china: a qualitative study. journal of clinical nursing, 29(21-22), 42704280. https://doi.org/10.1111/jocn.15464 gujral, h., rushton, c., & rosa, w. (2020). action steps toward a culture of moral resilience in the face of covid-19. journal of psychosocial nursing and mental health services, 58(7), 24. https://doi.org/10.3928/0279369520200617-01 henshall, c., davey, z., & jackson, d. (202). nursing resilience interventions-a way forward in challenging healthcare territories. journal of clinical nursing, 29(19-20). 3597-3599. https://doi.org/10.1111/jocn.15276 huang, l., lin, g., tang, l., yu, l., & zhou, z. (2020). special attention to nurses’ protection during the covid-19 epidemic. critical care, 24(1), 1-3. https://doi.org/10.1186/s13054-020-2841-7 kleres, j. (2010). emotions and narrative analysis: a methodological approach. journal for the theory of social behaviour, 41(2), 182–202. http://doi.org/10.1111/j.14685914.2010.00451.x iheduru-anderson, k. (2020, early view). reflection on the lived experience of working with limited personal protective equipment during covid-19 crisis. nursing inquiry. https://doi.org/10.1111/nin.12382 international council of nurses (2020, june). more than 600 nurses die from covid-19 worldwide. https://www.icn.ch/news/more600-nurses-die-covid-19-worldwide jackson, d., bradbury-jones, c., baptiste, d., gelling, l., morin, k., neville, s., & smith, g. (2020). life in the pandemic: some reflections on nursing in the context of covid-19. journal of clinical nursing, 29, 13-14, 2041-2043. https://doi.org/10.1111/jocn.15257 labrague, l., & de los santos, j. (2020, early view). fear of covid-19, psychological distress, work satisfaction and turnover intention among frontline nurses. journal of nursing management, 1-9. https://doi.org/10.1111/jonm.13168 lai, j., ma, s., wang, y., cai, z., hu, j., wei, n., wu, j., du, h., chen, t., li, r., tan, h., kang, l., yao, l., huang, m., wang, h., wang, g., liu, z., & hu, s. (2020). factors associated with mental health outcomes among healthcare workers exposed to coronavirus disease 2019. jama network open, 3(3). https://doi.org/10.1001/jamanetworkopen. 2020.3976 lapum, j., nguyen, m., fredericks, s., mcshane, j., & lai, s. (2020, online first). “goodbye … through a glass door”: emotional experiences of working in covid-19 acute care https://doi.org/10.1186/s13054-020http://doi.org/10.1111/j.1468http://doi.org/10.1111/j.1468ihtp, 1(1), 29-43, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 42 hospital environments. canadian journal of nursing research. lieblich, a., tuval-mahiach, r., & zilber, t. (1998). narrative research: reading, analysis, and interpretation. sage. markey, k., ventura, c., o’donnell, c., & doody, o. (2020, early view). cultivating ethical leadership in the recovery of covid-19. journal of nursing management, 1-5. https://doi.org/10.1111/jonm.13191 pan american health organization (2020, september). covid-19 has infected some 570,000 health workers and killed 2,500 in the americas, paho director says. https://www.paho.org/en/news/2-9-2020covid-19-has-infected-some-570000-healthworkers-and-killed-2500-americas-paho phua, d., tang, h., & tham, k. (2005). coping responses of emergency physicians and nurses to the 2003 severe acute respiratory syndrome outbreak. academic emergency medicine, 12(4), 322-328. doi: 10.1197/j.aem.2004.11.015 prestia, a. (2020, available online). the remote influence of nursing leadership. nurse leader. https://doi.org/10.1016/j.mnl.2020.06.005 raderstorf, t., barr, t., ackerman, m., & melnyk, b. (2020). a guide to empowering frontline nurses and healthcare clinicians through evidence-based innovation leadership during covid-19 and beyond. worldviews on evidence-based nursing, 17(4), 254-257. https://doi.org/10.1111/wvn.12451 reger, m., piccirillo, m., & buchman-schmitt, j. (2020). covid-19, mental health, and suicide risk among health care workers: looking beyond the crisis. journal of clinical psychiatry, 81(5), e1-2. https://doi.org/10.4088/jcp.20com13381 rosa, w., schlak, a.e., & rushton, c. h. (2020). a blueprint for leadership during covid-19. nursing management, 51(8), 28-34. https://doi.org/10.1097/01.numa.0000688 940.29231.6f rosser, e., westcott, l., ali, p. a., bosanquet, j., castro-sanchez, e., dewing, j., mccormack, b., merrell, j., & witham, g. (2020). the need for visible nursing leadership during covid19. journal of nursing scholarship, 52(5), 459-461. https://doi.org/10.1111/jnu.12587 sagherian, k., steege, l., cobb, s., & cho, h. (2020, early view). insomnia, fatigue and psychosocial well-being during covid-19 pandemic: a cross-sectional survey of hospital nursing staff in the united states. journal of clinical nursing. https://doi.org/10.1111/jocn.15566 shahrour, g, & dardas, l. (2020). acute stress disorder, coping self-efficacy and subsequent psychological distress among nurses amid covid-19. journal of nursing management, 28(7), 1686-1695. https://doi.org/10.1111/jonm.13124 shreffler, j., petrey, j., & huecker, m. (2020). the impact of covid-19 on healthcare worker wellness: a scoping review. the western journal of emergency medicine, 21(5), 1059–1066. https://doi.org/10.5811/westjem.2020.7.48 684 sim, m. (2020). the covid-19 pandemic: major risks to healthcare and other workers on the front line. occupational & environmental medicine, 77(5), 281-282. http://doi.org/10.1136/oemed-2020106567 smith, g., ng, f., & cheung, w. (2020). covid-19: emerging compassion, courage and resilience in the face of misinformation and adversity. journal of clinical nursing, 29(9-10),1425-1428. https://doi.org/10.1111/jocn.15231 stokes-parish, j., elliott, r., rolls, k., & massey, d. (2020). angels and heroes: the unintended consequence of the hero narrative. journal of nursing scholarship, 52(5),m 462-466. https://doi.org/10.1111/jnu.12591 thorne, s. (2020). nursing in uncertain times. nursing inquiry, 27(2), 1-2. https://doi.org/10.1111/nin.12352 viswanathan, r., myers, m., & fanous, a. (2020). support groups and individual mental health care via video conferencing for frontline clinicians during the covid-19 pandemic. psychometrics, 61(5), 538543.https://doi.org/10.1016/j.psym. 2020.06.014 world health organization (2020, april 27). archived: who timeline covid-19. https://www.who.int/news/item/27-042020-who-timeline---covid-19 https://www.paho.org/en/news/2-9-2020https://www.paho.org/en/news/2-9-2020https://doi.org/10.1016/j.psym https://www.who.int/news/item/27-04https://www.who.int/news/item/27-04ihtp, 1(1), 29-43, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 43 zeng, c., hafezi-bakhtiari, n., cooper, v., habibi, m., riley, p., & breathnach, a. (2020). characteristics and transmission dynamics of covid-19 in healthcare workers at a london teaching hospital. the journal of hospital infection, 106(2), 325-329. https://doi.org/10.1016/j.jhin.2020.07.025 96 ihtp, 1(1), 96-114, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 the impact of a transitional intervention for youth living with early psychosis: a mixed methods study elizabeth mccay1, philip tibbo2, gretchen conrad3, andria aiello1, candice crocker2,4, heather beanlands1, jasna schwind1, audrey danaher1, john langley5,6, nicole kirwan7, clare sheasgreen1 1daphne cockwell school of nursing, ryerson university, ryerson university, toronto, ontario, canada; 2nova scotia early psychosis program, nova scotia health authority, halifax, nova scotia, canada; 3transitional aged youth services, royal ottawa mental health centre, substance use and concurrent disorders program, ottawa, ontario, canada; 4nova scotia psychosis research unit, department of psychiatry, dalhousie university, halifax, nova scotia, canada; 5department of psychiatry, st. michael’s hospital, toronto, ontario, canada; 6university of toronto, department of psychiatry, toronto, ontario, canada; 7mental health and addictions service, community psychiatry, st. michael's hospital, toronto, ontario, canada corresponding author: e. mccay (bmccay@ryerson.ca) abstract our research team implemented and evaluated a 12-week manual-based intervention focused on sustaining recovery for youth with psychosis, as they transitioned from early psychosis intervention (epi) to community-based care teams. the study employed a mixed methods prospective cohort design. statistically significant improvement in functioning was observed for the intervention group participants only; as well as observed improvements in self esteem and quality of life (sqls), compared to the comparison group who demonstrated a significant decline in functioning. the qualitative findings revealed a sense of optimism about the future and the value of realistic goal setting in the intervention group. keywords early psychosis, transitional intervention, recovery, functioning, goal setting funding source this research was funded by canadian institutes of health research & ryerson university. background the onset of early psychosis in young adulthood can have lifelong consequences for the individual and their family (breitborde, 2017; caseiro, et al., 2012). the term early psychosis indicates that the young person is experiencing psychosis for the first time; an illness where individuals lose contact with reality and experience symptoms such as hallucinations, delusions, and social withdrawal (badcock & paulik, 2020). although early psychosis is a treatable condition, young adults experiencing early psychosis frequently encounter challenges with respect to their educational achievement, occupational or career choices, as well as their sense of self and the formation and quality of personal relationships (badcock & paulik, 2020; mccay et al., 2007). without effective treatment symptoms of psychosis may last for a number of months or even years. it is now understood that intervention for early psychosis should occur as quickly as possible in order to promote optimal recovery. early psychosis intervention (epi) programs offer a range of medical and psychosocial treatment modalities, often including case management, psychoeducation and 97 ihtp, 1(1), 96-114, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 medication management predominantly in community settings (dixon et al., 2015; murphy & brewer, 2011). considerable evidence exists to support the effectiveness of epi in treating the onset and early phase of psychotic illness; creating opportunities for recovery and improving quality of life overall (correll, et al., 2018; henry et al., 2010; jordan et al., 2018; malla et al., 2017; marino et al., 2015; mccay, et al., 2019; penno, hamilton & petrakis, 2017; verma, poon, lee, rao & chong, 2012). specifically, outcome studies evaluating the effectiveness of epi programs, which typically range in length from two to five years, have documented significant improvements in symptoms, as well as occupational and social functioning (marino et al., 2015; verma et al., 2012). researchers have also documented that subjective quality of life (marino et al., 2015; turner, boden, smith-hamel & mulder, 2009) has improved following treatment in epi programs, as well as the quality of social relationships (penno, hamilton & petrakis), offering further evidence that epi impacts not only symptoms but multiple dimensions of recovery. consistent with these research findings, our research team (as part of a study to assess the effectiveness of a transitional intervention for youth living with early psychosis) found that participants achieved optimal outcomes at the time they were identified as ready for discharge from three epi programs in two canadian provinces (ontario and nova scotia) (mccay, 2019). specifically, these youth had decreased symptomatology and psychological distress, as well as increased quality of life and overall functioning following epi treatment. ultimately, our research team was interested in understanding how the benefits attained in epi programs could be sustained once youth had been discharged. research findings suggest that although dramatic improvements have been observed across a number of dimensions for young people who receive epi treatment, there is a substantial risk that many of these gains may be lost following discharge (bertelsen et al., 2008; gafoor et al., 2010; kam, singh & upthegrove, 2015; lester, et al., 2012; secher, et al., 2014; singh, 2010). a particular concern identified in the literature pertaining to the trajectory of youth following treatment in epi is the risk of relapse (kam, singh, & upthegrove, 2015; taylor, pena, perez iglesias, 2018). the risk of relapse is greatest in the first year following discharge and targeted interventions are recommended to address functional recovery in order to maintain the gains made in epi (kam et al.). it is evident that notwithstanding the effectiveness of epi programs in meeting the needs of youth during the early phase of the illness, the question of how to best support recovery during and following the transition from epi services to full engagement in the community is an urgent clinical and research priority. one approach to meeting the needs of youth following discharge from epi has been to extend epi beyond two years; adding an additional three years of care in a modified service delivery model (albert et al., 2017; norman et al., 2011; malla, et al., 2017). one such study undertaken at the prevention and early intervention program (pepp) in london ontario created a less intensive three-year intervention, which followed the usual two-year pepp program to support ongoing recovery within an epi environment (norman, et al.). the study results indicated that the less intensive follow-up did support the gains acquired through epi specifically pertaining to positive symptoms and recovery (norman et al.). similar results were also obtained by malla et al., where participants who participated in an extended five-year epi were found to have a significantly longer period of remission of positive and negative symptoms compared to those who received two-year epi plus regular care. on the other hand, a study by albert et al. (2017) found few beneficial effects of a longer five-year epi program compared with two years of epi and treatment as usual, but the authors suggest that this finding may be due to the high level of treatment provided to the two-year comparison group. although there are somewhat mixed results associated with extended epi programs, the potential benefits support exploring this strategy. however, it is not always possible for epi programs to offer continued services, even with a modified service delivery, over the course of five years. further, the question of how best to maintain the positive outcomes acquired through epi once the young person living with early psychosis is discharged and care is transferred to community-based services remains a significant concern and largely unanswered question. in an effort to contribute to addressing this knowledge practice gap, our research team developed an innovative multi-component, evidence-based intervention to sustain the recovery process for youth experiencing psychosis as they transitioned from epi specialized services to community-based care. 98 ihtp, 1(1), 96-114, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 methods our research team implemented and evaluated a 12 week manual-based transitional intervention to assess the effectiveness of the intervention in sustaining the recovery process for youth with psychosis as they transitioned from specialized services to community-based care. this intervention included a 4-week group and individual component focused on discharge readiness, followed by an 8 week individual component focused on community based care. a transition coach from each site (toronto, ottawa and halifax) who was a mental health professional trained in the transitional intervention, delivered the intervention components, which were designed to support youth as they transitioned from their epi program to community based care. specifically, we hypothesized that participants receiving the 12-week transitional intervention would sustain optimal levels of recovery at mid-intervention (i.e., immediately following the 4 week discharge readiness component) and immediate post-intervention (i.e., immediately following the 8-week community-based care component) on indicators of self-esteem, engulfment, hope, quality of life and functioning, compared with participants receiving only usual treatment. in addition, we hypothesized that these indicators would be maintained at four weeks post intervention. although the intervention was not hypothesized to influence mental health symptoms, we monitored symptom levels and substance use in order to ensure that the intervention did not have any negative effect on mental health symptoms. study design the study employed a mixed methods prospective cohort design using both quantitative and qualitative methods. this design enabled the procurement of similar, yet distinct comparison and intervention groups recruited from each of the three epi program settings (toronto, ottawa and halifax). the comparison cohort was obtained by recruiting participants who were identified by the epi team as being ready for discharge within two months and who were receiving usual treatment. this cohort was recruited prior to the introduction of the evidence based transitional intervention and, as such, comparison cohort participants were not exposed to the study intervention. once a transition coach from each of the three epi program settings was trained in the transitional intervention, participants who were identified as being ready for discharge within two months were invited to participate in the intervention in addition to receiving usual care. data were obtained from participants in the comparison and intervention groups at approximately the same four time points: baseline (time 1), mid-intervention (time 2; 4 to 8 weeks post baseline), immediate post-intervention (time 3; 12 to 16 weeks post-baseline), and four weeks later (time 4; 16 to 20 weeks post-baseline). data collected at mid-intervention (i.e., following the 4-week discharge readiness component) were collected anywhere from 4 to 8 weeks post-baseline in order to allow adequate time to recruit a sufficient number of participants for the 4-week discharge readiness component and to ensure that these data were collected prior to the start of the 8-week community-based care component. as such, subsequent data collection time points were adjusted accordingly. within-group comparisons at mid-intervention and immediate post-intervention determined the effects of the intervention. within-group comparisons were conducted at time 4 to assess the sustainability of treatment effects. additionally, one-to-one semi structured interviews were conducted with participants who completed the transitional intervention based upon interest and availability. recruitment participants were recruited across sites between november 2015 and february 2019. to be eligible to participate in the comparison and intervention groups, individuals must have been: 1) receiving care in one of the three epi program settings; 2) identified by the epi team as being ready for discharge from the program within two months; 3) 18-35 years of age; 4) able to speak and understand english; and 5) able to provide informed consent. the diagnosis of individuals receiving care in these programs falls within the schizophrenia spectrum or is otherwise defined as a primary psychotic disorder. for both the comparison and intervention groups, eligible individuals were invited to participate by a healthcare provider within their program. the research ethics boards at ryerson university and at each epi program site approved the study. sample 99 ihtp, 1(1), 96-114, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 a total of 65 individuals were recruited to participate in the study: 38 were recruited for the comparison group and 27 for the intervention group. of the 38 comparison cohort participants, 30 participated in follow-up research interviews while eight dropped out (i.e., completing only the baseline questionnaires). of the 27 intervention cohort participants, 17 completed both the 4-week discharge readiness component and the 8-week community based care component of the intervention, five completed only the 4-week discharge readiness component, and five dropped out of the intervention (i.e., completing only the baseline questionnaires). these dropout rates are comparable to other intervention studies in early psychosis populations. 12-week transitional intervention three occupational therapists, one from each epi program setting (toronto, ottawa and halifax), were employed as transition coaches for the current study and delivered the transitional intervention to study participants. each transition coach received one-to one training in the manualized 12-week intervention. ongoing support and consultation continued throughout the intervention, both on a one-to-one basis and in a group format as needed via teleconference. as previously stated, the 12-week transitional intervention included both a 4-week group and an individual component focused on discharge readiness, followed by an 8-week individual component focused on community-based care. the 4 week group component involved weekly group meetings led by the transition coach. weekly discussion themes included the following: week 1 getting to know the youth; exploring hopes, dreams and goals; week 2 exploring barriers; minimizing self-stigma and engulfment; self-care; week 3 positive relationships and interpersonal effectiveness skills; and week 4 working toward meaningful life goals. additionally, five concrete skills, adapted from dialectical behaviour therapy (dbt) (linehan, 2015), were taught over the course of the group to encourage and facilitate self-care, as well as the formation and maintenance of positive relationships. delivered concurrently with the 4-week group component, the 4-week individual component focused on discharge readiness involved weekly one to-one sessions with the transition coach. during these individual sessions, the transition coach used an approach informed by motivational interviewing (mi) and cognitive behavioural principles to invite youth to identify and work toward self-identified goals. as an outcome of these individual sessions, the youth also developed their ‘personal passport’, which was a tangible tool to help them reaffirm their sense of self by identifying hopes, goals, accomplishments and problem-solving plans. during the second phase of the intervention, namely the 8-week individual component focused on community-based care, the youth and the transition coach continued to work on the youth’s goals, establishing a concrete planning, implementation and evaluation cycle. these mi-informed individual sessions aimed to help the youth build motivation to stay engaged with goal-setting processes, and to be active and collaborative participants in their own healthcare experiences. as part of this second phase of the intervention, the transition coach was also available to accompany the youth to community appointments (e.g., healthcare, recreational, or vocational appointments). the transition coaches were asked to complete integrity checklists created by the research team for each weekly group and individual session of the manualized 12-week transitional intervention. for each session held, the transition coaches were asked to rate themselves in terms of whether the intervention was delivered as intended, which also served to reinforce the substantive content of the intervention for the transition coaches. these ratings indicated that the transition coaches were able to address all of the components of the intervention. quantitative measures sociodemographic data were collected regarding individual characteristics such as age, time of illness onset, gender, sexual orientation and living arrangements. all participants were asked to complete a number of standardized measures with sound psychometric properties to assess self-esteem, engulfment, hope, quality of life and functioning. furthermore, symptom levels and substance use were monitored with well validated instruments. the rosenberg self-esteem scale (rses) (rosenberg, 1979) is a 10-item self-report inventory 100 ihtp, 1(1), 96-114, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 developed to measure global self-worth. the modified engulfment scale (mes) (mccay, 1998) measures the degree to which illness defines an individual’s self-concept and has been used with youth recovering from early psychosis. the miller hope scale (mhs) (miller & powers, 1988) is a 40-item likert self-report scale measuring multi-dimensional attributes of hope. the schizophrenia quality of life scale (sqls) (wilkinson et al., 2000) is a 30-item self report questionnaire, comprising three scales (psychosocial, motivation and energy, and symptoms and side-effects). each scale has a range from 0 (best possible health) to 100 (worst possible health), with lower scores indicating greater quality of life. the global assessment of functioning scale (gaf) (endicott, spitzer, fleiss & cohen, 1976) was used to rate social, occupational and psychological functioning. the social and occupational functioning assessment scale (sofas) (goldman, skodol & lave, 1992) assesses social and occupational functioning exclusive of psychiatric symptoms. in order to monitor symptom levels and substance use, participants completed the symptom checklist 90-revised (scl-90-r) (derogatis, 1994); to derive the global severity index (gsi); providing an overall measure of psychological distress and is considered to be the best single scale indicator of symptomatology. the ces-d (radloff, 1977) is a 20-item scale measuring depression. the depressive symptom index – suicidality subscale (dsi-ss) (joiner, pfaff & acres, 2002) is a 4-item self-report questionnaire to identify the intensity of suicidal ideation and impulses over the past two weeks. finally, the adolescent version of the michigan alcoholism screening test (mast) (snow, thurber & hodgson, 2002), a 19-item self-report inventory, was used to assess alcohol and drug use in adolescents. quantitative data analysis missing data accounted for less than 5% of data points and therefore item mean substitution and scale mean substitution were used to address missing data. the assumption of normality was assessed prior to commencing statistical analysis and all data were approximately normally distributed. in order to describe the sample, the frequencies, means and standard deviations for all study variables were calculated. to compare the sociodemographic characteristics and study measures for the intervention and comparison groups at baseline, independent t-tests were conducted for continuous variables and chi-square tests were conducted for categorical data. to compare the sociodemographic characteristics and study measures for each group at baseline between the three study sites, a one-way anova was conducted for continuous variables and chi-square tests were conducted for categorical data. a series of paired t-tests was conducted to assess for change between t1 and t2, and t1 and t3 on all study measures for the intervention and comparison groups. in addition, paired t-tests were conducted on all study measures between t3 and t4 to assess the sustainability of outcome variables overtime. the significance level was set at p = .05. qualitative data analysis in addition to completing standardized quantitative measures, one-to-one semi-structured interviews were conducted with participants who completed the intervention. these interviews were designed to gain an understanding of their experiences in the intervention, the impact of the intervention, and suggestions for improvement. fifteen participants were interviewed using a standard set of questions. interviews ranged from 30 60 minutes. of the 15 interviews, 12 were audio recorded and transcribed verbatim. for those participants who declined to be recorded, handwritten notes were taken. the principal investigator and experienced research staff carried out the primary thematic analysis and coding. the thematic analysis followed miles and huberman’s (1994) stages of analysis. the transcripts were read and re-read to elicit meaning units. the meaning units were then analyzed and organized into themes; resulting in the coding structure that described the experiences of youth in the intervention. reliability of the coding structure was established by having transcripts read by other members of the research team for consistency. differences in coding were resolved through consensus. results quantitative findings table 1 provides an overview of the sociodemographic characteristics for this sample (n = 65) at baseline. the mean age of participants was 26.65 years old (sd = 4.11). participants had been residing in canada for a mean of 23.85 years (sd = 101 ihtp, 1(1), 96-114, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 6.55) and had attained a mean of 13.05 years (sd = 2.00) of education. furthermore, participants had been living with their diagnosis for a mean of 5.15 years (sd = 2.75). the sample was made up of a greater number of males (72.3%) than females (26.2%), with the majority identifying their sexual orientation as heterosexual (93.8%) and their relationship status as single (92.3%). the majority of participants lived either with their parents (49.2%) or in their own place (36.9%). most were not in school (87.7%), were unemployed (56.9%), and identified that their illness had impacted their participation in school (64.1%) and their employment (62.3%). the vast majority stated they took their medications regularly (84.4%) and accessed social/community services (69.2%). at the time of the final data collection point (t4), the majority of participants had transitioned to community-based care. at baseline, there were no significant differences in sociodemographic characteristics between the intervention and comparison groups. furthermore, for both groups at baseline, there were no significant differences in sociodemographic characteristics between the study sites. there were no statistically significant differences between sites on any of the study measures for either group at baseline. as such, the outcome data from all three sites are reported together. baseline outcome measures for the intervention and comparison groups are reported in table 2. a series of independent t tests revealed no statistical differences between the intervention and comparison groups at baseline. as previously stated, although the intervention was not hypothesized to influence mental health symptoms, we monitored symptom levels and substance use in order to ensure that the intervention did not have any negative effect on mental health symptoms. at baseline, there were no significant differences in global symptoms, depression or suicidality between the intervention and comparison groups. however, a significant difference was detected with respect to substance use (mast) (t = 2.131, df = 63, p = .039), with the intervention group having higher mean substance use scores (5.89) (sd = 5.61) than the comparison group (3.24) (sd = 3.82) at baseline. a series of paired t-tests was conducted to assess for change between t1 and t2 (table 3), and t1 and t3 (table 4) on all study measures for the intervention and comparison groups. from baseline (t1) to mid intervention (t2), no statistically significant differences were found for either group. from baseline (t1) to immediate post-intervention (t3), however, statistically significant improvement in functioning was observed for the intervention group participants only; specifically, global functioning (gaf) (t = -2.632, df = 16, p = 0.018), and social and occupational functioning (sofas) (t = -2.331, df = 16, p = .033). furthermore, observed improvements in self-esteem (rses) (t = -1.923, df = 16, p = .072) and quality of life (sqls), specifically, motivation and energy (t = 1.938, df = 16, p = .070), approached statistical significance. in contrast, participants in the comparison group demonstrated a significant decline in social and occupational functioning (sofas) (t = 2.085, df = 22, p = .049) from t1 to t3. in addition, there were no significant differences in symptom levels or substance use in either the intervention group or comparison group from t1 to t2. furthermore, both the intervention group (t = 2.742, df = 16, p = 0.14) and the comparison group (t = 2.522, df = 22, p = 0.19) demonstrated a significant improvement in substance use (mast) from t1 to t3. taken together, these findings pertaining to mental health symptoms indicate that the intervention did not have a negative effect on symptom levels. in order to assess the sustainability of outcome measures over time, paired t-tests were conducted on all study variables between time 3 and time 4 (table 5) for each group. not only did these tests indicate that all of the gains attained during the transitional intervention were sustained at 4 weeks post-intervention but observed improvements in self esteem (rses) (t = -2.092, df = 14, p = .055) approached statistical significance for the intervention group participants only. qualitative findings although a number of themes were identified in the data, those that best capture the youth’s experience of participating in the intervention are reported here. these themes include: welcoming support in the midst of experiencing fear and loss; experiencing the transitional intervention, and impact of the transitional intervention. welcoming support in the midst of experiencing fear and loss. this first major theme reflects the insecurity experienced by youth as they transitioned 102 ihtp, 1(1), 96-114, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 from the epi program to the community. the time leading up to discharge was associated with apprehension as youth prepared to leave the certainty of the epi program for the uncertainty that lay ahead. three sub-themes emerged within this major theme: a) experiencing apprehension; b) preparing to let go of the epi program; and c) welcoming support: choosing to take part in the transitional intervention. in the first sub-theme, experiencing apprehension, youth shared their concerns regarding an uncertain future: i was scared, cause i thought i wouldn’t have my medication anymore and i didn’t know what was gonna happen, so yes i did have concerns for the future. (125) um well it was like i was going through a pretty hard time because i was really scared about my future and i was really nervous about it and i felt like i would never get anywhere in life... (14) many had come to know the epi program staff well and expressed uncertainty regarding whether community agencies would provide effective support in the same way as the epi program. one participant expressed her concern about being perceived as a low priority for continued care, given her improved health status: i was just wondering if i was going to get the same kind of help that i was receiving. but it seems like i’m a low priority because…my state was ok, my sleep was ok. (15) in the second sub-theme, preparing to let go of the epi program, youth talked about how they benefitted from the care they received and expressed a desire to continue working with the team, even as they knew they were about to be discharged. as one young person observed: no, i just wish i didn’t have to be discharged in total. because, i wanted to work with my doctor a little bit longer on things. (124) epi programs were an anchor for youth because of the access to an experienced team that understood them and their illness experience. many youth had established strong trusting relationships with staff and realized the benefits of care they received. one young person described this in the following way: i really enjoyed ‘epi program’ cause i felt like it was a really good community and i felt like everyone was really um kind, and like compassionate and empathetic. (14) the third sub-theme, welcoming support: choosing to take part in the transitional intervention, reflects the youth’s decision to participate in the transitional intervention. for youth, the intervention offered the possibility of working on goals and was an opportunity to focus on what they valued. in the following quote, one participant indicated he could benefit from help with goals: i was hopeful that it could help me with my goals, and i was interested in seeing if it could actually motivate me or inspire me to work toward my goals and to be successful in them. (119) the intervention was thus seen as providing additional support as youth transitioned out of the epi program. experiencing the transitional intervention. the second major theme reflects youth’s experience of participating in the various components of the transitional intervention, namely: a) being in a group: realizing that i am not alone; b) working with a transition coach; and c) working towards my goals. the first sub-theme reflects youth’s perception of participating in the group component of the intervention. the group was perceived as valuable, since participants realized they were not alone and that others had challenges too; as these participants aptly described: it was helpful because the other guy there and i really related because he went through a lot of the stuff i went through and stuff like that. he was nice and pretty open during the meetings, so it seemed like we went through a lot of the same stuff. (118) [it was] encouraging to see others with the same illness [and] share lots of things in common. (215) the group was an opportunity to share experiences, as captured by another participant: 103 ihtp, 1(1), 96-114, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 it was helpful to have the structure in the groups, but it was also helpful not to follow it too intensely, and to be able to focus on what we wanted to, so that we could listen and relate to each other. (119) in the second sub-theme, working with a transition coach, youth described the experience of working with a coach as a process that was validating, action oriented, and built trust. within the context of this strong relationship with the coach, youth felt heard as demonstrated in the quote below: well she gave me time to talk about things ya know. to be open with her about my troubles and concerns. that helped. (18) the relationship with the transition coach centred on the youth’s needs and their support through the transition. youth felt they benefitted from this support, as expressed so clearly in the following quote: [the transition coach] helped me a lot with that. she helped me with meeting [new staff] to see who she was. she didn’t just say ‘go there’ and drop me just like that. she didn’t say ‘this is who you’re going to meet’ she actually went with me to meet them which was very helpful. (118) the transition coach worked with youth using a person-centred approach, which was encouraging and geared to helping youth experience success. one participant described his experience in this way: i liked the involvement – it was way more involved than i thought it would be. it focused on what would make me happy and feel successful. meeting at an art studio and doing things that are related to my goals was great. (119) [she] made me realize that i wasn’t giving myself credit for the things that i did. (213) the third sub-theme, working towards my goals, reflects the experience of participants as they worked toward goals that were meaningful to them, such as; improving relationships, returning to school, and dealing with drug and alcohol use. the transition coach also provided guidance that was specific, concrete and tailored to the youth’s self-identified goals. youth, as exemplified in the quote below, learned a range of skills in goal-setting: well [the transition coach] and i would talk about how to reach those goals and we would write them down and kind of set them in place and like was strategic like steps and also like kind of break them down like how we would do it…and she helped me kind of consider like what goals are optimal for me at this time in my life. (14) in the following quote one young person described working on a resume with the transition coach, which he hoped would result in employment: um, probably when i got a new resume, she helped me build a new resume and i got it on my email now and that’s gonna help me get a job, so. that’s probably the most helpful thing. (121) impact of the transitional intervention. easing the transition. the third major theme, impact of the transitional intervention: easing the transition, captured the benefits of participating in the transitional intervention from the youth’s perspective and included: a) reclaiming a valued sense of self and increasing self-reliance and b) envisioning future possibilities. in the first sub-theme, reclaiming a valued sense of self and increasing self-reliance, a valued sense of self contributed to a sense of agency that helped diminish the engulfing elements of the illness. the change that characterized the transition was expressed by the following participant in this way: …just cause i have schizophrenia doesn’t mean it can hold me back from having a good future…like…(i) feel hopeful for the future like a lot of people (i) know go through schizophrenia and hallucinations but they’re still capable, have the same potential as everybody else. (17) just trying to be a better version of [my] self. 213 youth expressed an enhanced confidence which seemed connected to success in planning and meeting even modest goals that they themselves established. a number of youth talked about feeling proud of accomplishing self-set goals, as captured in the following quote: the study [intervention] taught me to really set time frames for my goals instead of just saying ‘someday’, 104 ihtp, 1(1), 96-114, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 and to hold myself accountable for the goals i have. now i’m just trying to keep that up. this study really helped by holding my hand through this process and now i feel confident in self-sufficiency and can hold my own hand. (119) as youth gained a renewed sense of confidence and increasing self-reliance, they began to re evaluate previously held beliefs and an increased sense of possibility was evident. the second sub-theme, envisioning future possibilities, reflects this stage in the transition. a sense of possibility was described as rooted in hope for a better future and the ability to achieve goals that were important to the youth, regardless of how small. youth were beginning to plan their lives despite challenges. one young person described his experience in this way: um i feel more secure about my future like more confident in my … um and i, i like i kind of i’m able to um work towards certain things better. now it’s like easier for me to do like the things that i need to do during the day. (14) participants could situate their illness experience within a broader context; seeing themselves as persons and overcoming the challenges and perceived negative expectations associated with their illness. there was an emerging sense of hope and possibility that many had not experienced in some time. this sense of hope is captured in the following quote: yeah, previously i was thinking that like even if i like go to school and get a degree and get a job that i want to do i’ll always be second tier to you know someone that doesn’t have the problems that i have. and that i wouldn’t be you know a totally functional member of society ever…and that opinion of myself has changed especially recently… i’m starting to become the person that i remember being before … and it feels amazing. (20) these qualitative descriptions suggest a sense of optimism about the future and the value of realistic goal setting. many components of the transitional intervention enabled youth to focus on their life and what they wanted to do. the role of the transition coach, however, was pivotal in working with youth in a person-centred way to navigate the time of transition. discussion the qualitative findings of this mixed methods study conveyed an understanding of the apprehension experienced by the intervention participants, as they approached discharge from epi programs and were dealing with the transition to community-based care. the apprehension centered on not knowing what to expect, as well as on an underlying sense that life would be difficult without the possibility of achieving hoped for goals and aspirations. there was also a sense of loss regarding trusting relationships with healthcare practitioners who had provided valuable support through the recovery process. the level of uncertainty experienced by participants within the context of leaving epi programs was a catalyst for youth to participate in the transitional intervention. importantly, youth viewed the intervention as an opportunity to work toward achieving their goals. youth in the intervention and comparison groups had achieved optimal outcomes at the time they were identified as ready for discharge from their epi programs. for those participating in the transitional intervention, these optimal outcomes were sustained over the 20-week follow-up across a number of dimensions including functional levels, self-esteem, engulfment, hope and quality of life. participants who did not have the benefit of the transitional intervention also demonstrated comparable levels of recovery across some of the same study variables, specifically; self-esteem, engulfment, hope and quality of life. taken together, these findings are consistent with the literature, which documents the positive impact of early intervention services on recovery including a sense of hope for the future (lester, et al., 2012), managing the impact of negative stereotypes on self-esteem (mccay, 2007; romm et al., 2011), and quality of life (browne, et al., 2017; fujino et al., 2016). on the other hand, indicators of social, occupational and psychological functioning revealed differing results across the intervention and comparison groups. specifically, participants in the intervention group demonstrated statistically significant improvements on social, occupational and psychological functioning, as measured by the gaf and sofas; gains, which were maintained at 20 weeks 105 ihtp, 1(1), 96-114, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 post-baseline. participants in the comparison group, however, who did not have the benefit of the transitional intervention, demonstrated a significant decline in functional levels as measured by the sofas, a decline that persisted at 20 weeks post-baseline. a substantial interest has been placed in the literature on the level of functioning attained following epi programs with authors (verma, et al., 2012; verma, subramaniam, abdin, poon & chong, 2012) identifying the cutoff score of 61 or greater on the gaf as indicative of functional recovery. it is noteworthy that in the current study the mean gaf score at immediate post-intervention and at 20 weeks post-baseline for the intervention group was 73.2; suggesting that intervention participants had attained increased levels of functioning, which exceeded those levels generally reported in the literature for this population (norman et al., 2011). it is possible that the unique elements of the manualized transitional intervention, specifically the use of an evidence based approach to goal-setting in the context of a supportive relationship with the transition coach, could account for these positive results. further, as noted, participants in the comparison group who did not have the benefit of the transitional intervention demonstrated a significant decline in functional levels as measured by the sofas. it is important to note that the comparison group scores on the sofas were higher than scores reported for young adults completing an epi program (klaas et al., 2017), suggesting a reasonable level of social and occupational functioning in the comparison group. however, what is concerning is the downward trend of these scores with respect to the level of functioning for those who did not receive the transitional intervention. in addition to the quantitative measures, which indicated significantly improved levels of functioning, youth who participated in the intervention also subjectively described improved functioning. specifically, they exemplified how engaging with the transition coach within the context of the intervention enabled them to focus on setting and achieving goals that were important to them, such as returning to school and pursuing work opportunities. the youth also emphasized the importance of the relationship with the transition coach, which was experienced as person-centered, supportive and flexible; with the transition coach supporting youth to tailor their personal goals to best meet their needs. it was also clear from the youths’ descriptions that working toward their goals had a positive impact on their sense of confidence and self-reliance. this finding aligns with the increased self-esteem scores attained following both the completion of the transitional intervention and at 20 weeks post baseline, as well as the trend observed in the motivation and energy subscale of the sqls toward improved motivation. it is also noteworthy that participants described an improved sense of self, which was clearly linked to both achieving goals and to challenging negative expectations held by themselves and others pertaining to living with a mental illness. participants also identified the value of sharing experiences with other youth in the group setting, which likely helped to challenge negative expectations regarding themselves and the illness. group programs are well recognized as effective strategies for promoting social functioning (cotton et al., 2011), as well as enhancing sense of self and reducing the engulfing effects of the illness (mccay, 2007). although there was not a statistically significant decrease in engulfment or increase in hope scores in the current study, participants in both the intervention and comparison groups demonstrated mes and mhs scores comparable to those who had completed a 12-week intervention to reduce self-stigma and engulfment (mccay, 2007), suggesting that the participants in the current study had attained relatively positive levels of these outcomes. it is possible that the qualitative findings pertaining to participants’ perceptions of an improved sense of themselves was linked to participating in setting future-oriented goals. furthermore, participation in the transitional intervention seemed to allow youth participants to gain increased confidence in their capacity to achieve goals and to live a “normal” life. by way of contrast, there was a sense expressed by some youth that, prior to the transitional intervention, it would not be possible to achieve hoped for goals and aspirations. there was also a sense of loss regarding trusting relationships with healthcare providers. following the transitional intervention, a sense of hope for a better future had been rekindled in spite of the illness and there was an increased sense of security in themselves, apart from their relationships with healthcare providers. 106 ihtp, 1(1), 96-114, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 the current study has several limitations. foremost, the study sample is relatively small. furthermore, the study recruited only participants who were interested and able to participate in a 12 week face-face intervention; thus, limiting generalizability. moreover, the duration of the study intervention and follow-up was over a period of five months and although the majority of participants had transitioned to community-based care at the 20 weeks post-baseline, it is not possible to know whether the benefits observed in this preliminary study would be sustained over the longer term. there are increasing efforts to develop accessible interventions which may support youth to continue to engage in recovery and to maintain gains achieved in epi programs. for example, the horyzons trial currently underway offers an on-line intervention with a focus on social functioning (alvarez-jimenez et al., 2019). there is no doubt that innovative and accessible approaches to providing ongoing support for youth to continue to engage in recovery following the completion of epi are urgently needed. conclusion the findings from the current study offer promise that a transitional intervention, such as the one we used, has the potential to extend the benefits of epi programs through ongoing relationship building, group interaction and meaningful goal-setting; reinforcing for youth their potential to engage in a life that they had previously envisioned for themselves prior to their illness. this transitional intervention appears to be particularly effective in supporting the ongoing development of psychological, occupational and social functioning, all of which are critically important in the context of meaningful recovery. overall, the results attained in this study suggest that the introduction of an active intervention to support the process of transition to community-based care may indeed enable youth to continue to engage in recovery and to maintain the gains achieved in epi programs. references albert, n., melau, m., jensen, h., emborg, c., jepsen, j. r. m., fagerlund, b., ... & nordentoft, m. (2017). five years of specialised early intervention versus two years of specialised early intervention followed by three years of standard treatment for patients with a first episode psychosis: randomised, superiority, parallel group trial in denmark (opus ii). bmj, 356, i6681. alvarez-jimenez, m., bendall, s., koval, p., rice, s., cagliarini, d., valentine, l., ... & phillips, j. (2019). horyzons trial: protocol for a randomised controlled trial of a moderated online social therapy to maintain treatment effects from first-episode psychosis services. bmj open, 9(2), e024104. badcock, j. c., & paulik, g. (2020). a clinical introduction to psychosis: foundations for clinical psychologists and neuropsychologists. academic press, an imprint of elsevier. bertelsen, m., jeppesen, p., petersen, l., thorup, a., øhlenschlæger, j., le quach, p., . . . nordentoft, m. (2008). five-year follow-up of a randomized multicenter trial of intensive early intervention vs standard treatment for patients with a first episode of psychotic illness: the opus trial. archives of general psychiatry, 65(7), 762-771. breitborde, n. j., moe, a. m., ered, a., ellman, l. m., & bell, e. k. (2017). optimizing psychosocial interventions in first-episode psychosis: current perspectives and future directions. psychology research and behavior management, 10, 119-128. browne, j., penn, d. l., meyer-kalos, p. s., mueser, k. t., estroff, s. e., brunette, m. f., ... & robinson, d. g. (2017). psychological well being and mental health recovery in the nimh raise early treatment program. schizophrenia research, 185, 167-172 caseiro, o., pérez-iglesias, r., mata, i., martínez garcia, o., pelayo-terán, j. m., tabares seisdedos, r., ortiz-garcía de la foz, victor, vázquez-barquero, j. l., & crespo-facorro, b. (2012). predicting relapse after a first episode of non-affective psychosis: a three year follow-up study. journal of psychiatric research, 46(8), 1099-110. correll, c.u., galling, b., pawar, a., krivko, a., bonnetto, c., ruggeri, m…..hui, c. (2018). comparison of early intervention services vs. treatment as usual for early-phase psychosis: a systematic review, meta analysis and meta-regression. jama psychiatry, 75(6), 55-565. 107 ihtp, 1(1), 96-114, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 cotton, s. m., luxmoore, m., woodhead, g., albiston, d. d., gleeson, j. f., & mcgorry, p. d. (2011). group programmes in early intervention services. early intervention in psychiatry, 5(3), 259-266. derogatis, l. r. (1994). symptom checklist-90-r: administration, scoring & procedure manual for the revised version of the scl 90. minneapolis, mn: national computer systems. dixon, l. b., goldman, h. h., bennett, m. e., wang, y., mcnamara, k. a., mendon, s. j., . . . essock, s. m. (2015). implementing coordinated specialty care for early psychosis: the raise connection program. psychiatric services, 66(7), 691-698. endicott j., spitzer r.l., fleiss j.l., cohen j. (1976). the global assessment scale: a procedure for measuring overall severity of psychiatric disturbance. archives of general psychiatry, 33(6), 766–771. fujino, h., sumiyoshi, c., sumiyoshi, t., yasuda, y., yamamori, h., ohi, k., . . . imura, o. (2016). predicting employment status and subjective quality of life in patients with schizophrenia. schizophrenia research: cognition, 3(20-25). gafoor, r., nitsch, d., mccrone, p., craig, t. k., garety, p. a., power, p., & mcguire, p. (2010). effect of early intervention on 5 year outcome in non-affective psychosis. the british journal of psychiatry, 196(5), 372-376. goldman, h. h., skodol, a. e., & lave, t. r. (1992). revising axis v for dsm-iv: a review of measures of social functioning. the american journal of psychiatry, 149(9), 1148-1156. henry, l. p., amminger, g. p., harris, m. g., yuen, h. p., harrigan, s. m., prosser, a. l., . . . mcgorry, p. d. (2010). the eppic follow-up study of first-episode psychosis: longer term clinical and functional outcome 7 years after index admission. the journal of clinical psychiatry, 71(6), 716-728. joiner, t. e., pfaff, j. j., acres, j. g. (2002). a brief screening tool for suicidal symptoms in adolescents and young adults in general health settings: reliability and validity data from the australian national general practice youth suicide prevention project. behaviour research and therapy, 40(4), 471-481. jordan, g., macdonald, k., pope, m. a., schorr, e., malla, a. k., & iyer, s. n. (2018). positive changes experienced after a first episode of psychosis: a systematic review. psychiatric services, 69(1), 84-99. kam, s. m., singh, s. p., & upthegrove, r. (2015). what needs to follow early intervention? predictors of relapse and functional recovery following first-episode psychosis. early intervention in psychiatry, 9(4), 279 283. klaas, h. s., clémence, a., marion-veyron, r., antonietti, j., alameda, l., golay, p., & conus, p. (2017). insight as a social identity process in the evolution of psychosocial functioning in the early phase of psychosis. psychological medicine, 47(4), 718-729. lester, h., khan, n., jones, p., marshall, m., fowler, d., amos, t., & birchwood, m. (2012). service users’ views of moving on from early intervention services for psychosis: a longitudinal qualitative study in primary care. the british journal of general practice, 62(596), e183-e190 linehan, m. m. (2015). dbt skills training manual. new york. guilford press. malla, a., joober, r., iyer, s., norman, r., schmitz, n., brown, t., ... & abdel‐baki, a. (2017). comparing three‐year extension of early intervention service to regular care following two years of early intervention service in first‐episode psychosis: a randomized single blind clinical trial. world psychiatry, 16(3), 278286. marino, l., nossel, i., choi, j. c., nuechterlein, k., wang, y., essock, s., ... & dixon, l. (2015). the raise connection program for early psychosis: secondary outcomes and mediators and moderators of improvement. the journal of nervous and mental disease, 203(5), 365. mccay, e., beanlands, h., zipursky, r., roy, p., leszcz, m., landeen, j., conrad, g., romano, d., ryan, k., francis, d., hunt, j., parmasaad, s., & chan, e. (2007). a randomised controlled trial of a group intervention to reduce engulfment and self-stigmatisation in first episode schizophrenia. advances of mental health, 6(3), 212-220. 108 ihtp, 1(1), 96-114, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 mccay, e., tibbo, p.,conrad, g., crocker, c., langley, j., kirwan, n., aiello, a., danaher, a., sheasgreen, c. (2019). prepared for transition? a cross-sectional descriptive study of the gains attained in early psychosis programs. submitted to early intervention in psychiatry. mccay, e. a., & seeman, m. v. (1998). a scale to measure the impact of a schizophrenic illness on an individual's self-concept. archives of psychiatric nursing, 12(1), 41 49. miller j. f., & powers, m. j. (1988). development of an instrument to measure hope. nursing research, 37, 6-10. miles m.b. & huberman a.m. (1994) qualitative data analysis. sage publications, thousand oaks, ca. murphy, b. p., & brewer, w. j. (2011). early intervention in psychosis: strengths and limitations of services. advances in psychiatric treatment : the royal college of psychiatrists' journal of continuing professional development, 17(6), 401-407. norman, r. m. g., manchanda, r., malla, a. k., windell, d., harricharan, r., & northcott, s. (2011). symptom and functional outcomes for a 5 year early intervention program for psychoses. schizophrenia research, 129(2), 111-115. penno, s. j., hamilton, b., & petrakis, m. (2017). early intervention in psychosis: health of the nation outcome scales (honos) outcomes from a five-year prospective study. archives of psychiatric nursing, 31(6), 553 560. radloff, l.s. (1977). the ces-d scale: a self-report depression scale for research in the general population. applied psychological measurement, 1(3), 385-401. romm, k. l., rossberg, j. i., hansen, c. f., haug, e., andreassen, o. a., & melle, i. (2011). self esteem is associated with premorbid adjustment and positive psychotic symptoms in early psychosis. bmc psychiatry, 11(1), 136-136. rosenberg, m. (1979). conceiving the self. new york, ny: basic books. secher, r. g., hjorthøj, c. r., austin, s. f., thorup, a., jeppesen, p., mors, o., & nordentoft, m. (2014). tenyear follow-up of the opus specialized early intervention trial for patients with a first episode of psychosis. schizophrenia bulletin, 41(3), 617-626. singh, s. p. (2010). early intervention in psychosis. the british journal of psychiatry, 196(5), 343-345. snow, m., thurber, s., hodgson, j.m. (2002). an adolescent version of the michigan alcoholism screening test. adolescence, 37(148), 835-840. taylor, m. j., pena, t. b., & perez‐iglesias, r. (2018). who needs aesop? predicting long‐term readmission rates from routine early intervention team discharge information. early intervention in psychiatry, 12(2), 240 242. turner, m. a., boden, j. m., smith-hamel, c., & mulder, r. t. (2009). outcomes for 236 patients from a 2-year early intervention in psychosis service. acta psychiatrica scandinavica, 120(2), 129-137. verma, s., poon, l. y., lee, h., rao, s., & chong, s. a. (2012). evolution of early psychosis intervention services in singapore. east asian archives of psychiatry, 22(3), 114. verma, s., subramaniam, m., abdin, e., poon, l. y., & chong, s. a. (2012). the singapore early psychosis intervention programme (epip): a programme evaluation. asian journal of psychiatry, 5(1), 63-67. wilkinson, g., hesdon, b., wild, d., cookson, r., farina, c., sharma, v., . . . jenkinson, c. (2000). self-report quality of life measure for people with schizophrenia: the sqls. the british journal of psychiatry, 177(1), 42 46. 109 ihtp, 1(1), 96-114, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 table 1: sociodemographic characteristics of sample (n = 65) demographic variables intervention (n = 27) comparison (n = 38) total sample (n = 65) mean sd mean sd mean sd 1. age 26.00 4.50 27.11 3.80 26.65 4.11 2. length of time since diagnosis (years) 4.50 2.00 **5.64 **3.14 **5.15 **2.75 3. length of time in canada (years) 23.24 5.88 24.29 7.04 23.85 6.55 4. years of education (grade 1 and up) 13.52 1.95 12.71 2.00 13.05 2.00 n % n % n % 5. study site toronto 9 33.3 11 28.9 20 30.8 ottawa 10 37.0 9 23.7 19 29.2 halifax 8 29.6 18 47.4 26 40.0 6. gender male 20 74.1 27 71.1 47 72.3 female 7 25.9 10 26. 3 17 26.2 other 0 0 1 2.6 1 1.5 7. current living situation parent’s home 15 55.6 17 44.7 32 49.2 own place 9 33.3 15 39.5 24 36.9 other 3 11.1 6 15.8 9 13.8 8. sexual orientation* heterosexual 26 96.3 34 91.9 60 93.8 other**** 1 3.7 3 8.1 4 6.3 9. relationship status single 24 88.9 36 94.7 60 92.3 other 3 11.1 2 5.3 5 7.7 10. medications* yes 23 88.5 31 81.6 54 84.4 no 2 7.7 5 13.2 7 10.9 sometimes 1 3.8 2 5.3 3 4.7 11. school yes 5 18.5 3 7.9 8 12.3 110 ihtp, 1(1), 96-114, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 no 22 81.5 35 92.1 57 87.7 12. illness impact on school* yes 18 69.2 23 60.5 41 64.1 no 8 30.8 15 39.5 23 35.9 13. employment yes 9 33.3 19 50 28 43.1 no 18 66.7 19 50 37 56.9 14. illness impact on employment*** yes 15 60 23 63.9 38 62.3 no 10 40 13 36.1 23 37.7 15. social/community service utilization yes 19 70.4 26 68.4 45 69.2 no 8 29.6 12 31.6 20 30.8 * 1 missing value ** 2 missing values *** 4 missing ****other refers to lesbian/gay, or bisexual 111 ihtp, 1(1), 96-114, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 table 2: study measures for intervention and comparison groups at baseline study variables intervention (n=27*) comparison (n=38**) significance mean sd mean sd t (df) p rses 28.26 6.77 30.45 4.97 -1.504 (63) .138 mes 74.52 21.48 76.18 20.72 -.315 (63) .754 mhs 154.78 26.36 154.29 26.49 .073 (63) .942 sqls motivation & energy 37.57 16.82 38.25 15.64 -.169 (63) .866 psychosocial 38.83 29.62 36.45 19.85 .363 (63) .718 symptoms & side effects 19.33 20.40 22.70 18.75 -.688 (63) .494 gaf 68.88 13.47 70.00 11.82 -.354 (63) .725 sofas 70.27 13.53 70.76 11.99 -.155 (63) .877 *of the 27 participants who were recruited for the intervention group and who completed the baseline study measures, 5 dropped out, leaving 22 intervention group participants. **of the 38 participants who were recruited for the comparison group and who completed the baseline study measures, 8 dropped out, leaving 30 comparison group participants. 112 ihtp, 1(1), 96-114, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 table 3: paired-samples t tests for study measures at baseline (t1) and mid-intervention (t2) for intervention and comparison groups group assignment t1 t2 significance mean sd mean sd t (df) p intervention group n = 20* n = 20* rses 28.15 7.12 29.30 6.33 -1.878 (19) .076 mes 75.90 20.84 73.90 20.41 .963 (19) .348 mhs 154.55 26.38 159.80 25.08 -1.187 (19) .250 sqls motivation &energy 39.29 16.06 34.29 17.28 1.629 (19) .120 psychosocial 37.33 27.67 36.17 29.64 .435 (19) .668 symptoms & se1 18.28 20.98 19.06 23.56 -.340 (19) .738 gaf 68.10 12.83 69.95 11.67 -1.065 (19) .300 sofas 69.85 12.06 69.90 13.62 -.038 (19) .970 comparison group n = 26** n = 26** rses 30.62 5.31 30.12 5.57 .703 (25) .488 mes 71.58 17.91 69.69 19.76 .885 (25) .385 mhs 157.62 27.13 158.35 25.12 -.253 (25) .803 sqls motivation &energy 36.26 12.64 31.57 12.15 1.705 (25) .101 psychosocial 35.26 20.80 32.73 18.73 .900 (25) .377 symptoms & se1 22.00 18.55 21.38 17.85 .275 (25) .786 gaf 71.08 11.93 69.72 11.39 .845 (25) .406 sofas 71.27 12.03 69.60 10.98 1.007 (25) .324 *20 of the 22 intervention group participants completed both the t1 & t2 questionnaires (1 participant completed only the t1, t3 & t4 questionnaires; and 1 participant completed only the t1 & t3 questionnaires). therefore, the above analysis includes only 20 intervention group participants. **26 of the 30 comparison group participants completed both the t1 & t2 questionnaires (1 participant completed only the t1, t3 & t4 questionnaires; and 3 participants completed only the t1 & t3 questionnaires). therefore, the above analysis includes only 26 comparison group participants. 1se – side effects 113 ihtp, 1(1), 96-114, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 table 4: paired-samples t tests for study measures at baseline (t1) and immediate post-intervention (t3) for intervention and comparison groups group assignment t1 t3 significance mean sd mean sd t (df) p intervention group n = 17* n = 17* rses 27.94 7.25 29.76 5.79 -1.923 (16) .072 mes 77.18 22.74 75.47 22.37 .524 (16) .607 mhs 156.12 28.84 159.71 26.20 -1.092 (16) .291 sqls motivation &energy 38.45 17.70 31.51 13.20 1.938 (16) .070 psychosocial 39.90 31.01 41.08 31.97 -.332 (16) .744 symptoms & se1 20.40 21.82 23.16 27.18 -.654 (16) .523 gaf 68.47 13.60 73.20 14.95 -2.632 (16) .018 sofas 69.88 12.84 73.67 13.02 -2.331 (16) .033 comparison group n = 23** n = 23** rses 29.30 4.81 29.09 7.35 .217 (22) .830 mes 79.83 18.36 78.13 24.34 .461 (22) .649 mhs 148.96 28.23 147.70 30.98 .436 (22) .667 sqls motivation &energy 41.77 14.74 38.04 15.37 1.482 (22) .153 psychosocial 38.12 19.11 35.22 20.27 1.272 (22) .217 symptoms & se1 22.15 16.04 19.43 15.25 1.374 (22) .183 gaf 68.48 12.24 65.61 11.58 1.334 (22) .196 sofas 69.04 12.75 64.61 11.32 2.085 (22) .049 *17 of the 22 intervention group participants completed both the t1 & t3 questionnaires (5 participants completed only the t1 & t2 questionnaires). therefore, the above analysis includes only 17 intervention group participants. **23 of the 30 comparison group participants completed both the t1 & t3 questionnaires (2 participants completed only the t1, t2 & t4 questionnaires; and 5 participants completed only the t1 & t2 questionnaires). therefore, the above analysis includes only 23 comparison group participants. 1se – side effect 114 ihtp, 1(1), 96-114, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 table 5: paired-samples t tests for study measures at immediate post-intervention (t3) and 4-weeks post intervention (t4) for intervention and comparison groups group assignment t3 t4 significance mean sd mean sd t (df) p intervention group n = 15* n = 15* rses 29.67 6.04 31.00 6.91 -2.092 (14) .055 mes 77.93 22.19 75.53 21.11 .922 (14) .372 mhs 158.87 26.95 160.93 24.44 -.552 (14) .590 sqls motivation &energy 31.90 13.46 29.05 16.36 1.023 (14) .324 psychosocial 41.78 32.68 36.56 27.64 1.066 (14) .304 symptoms & se1 24.58 28.71 20.83 24.20 .662 (14) .519 gaf 73.28 15.79 73.20 15.83 .057 (14) .955 sofas 73.78 13.91 73.60 14.81 .185 (14) .856 comparison group n = 18** n = 18** rses 28.94 8.12 29.06 8.02 -.166 (17) .870 mes 79.33 26.30 77.28 25.91 .962 (17) .350 mhs 146.89 33.30 148.72 28.28 -.527 (17) .605 sqls motivation &energy 37.50 16.94 36.71 16.43 .304 (17) .765 psychosocial 34.35 22.38 35.74 23.17 -.534 (17) .601 symptoms & se1 18.75 15.72 19.79 18.22 -.551 (17) .589 gaf 64.61 11.87 64.14 11.45 .317 (17) .755 sofas 63.61 11.91 63.44 8.61 .086 (17) .932 *15 of the 22 intervention group participants completed both the t3 & t4 questionnaires (1 participant completed only the t1, t2 & t3 questionnaires; 5 participants completed only the t1 & t2 questionnaires; and 1 participant completed only the t1 & t3 questionnaires). therefore, the above analysis includes only 15 intervention group participants. **18 of the 30 comparison group participants completed both the t3 & t4 questionnaires (2 participants completed only the t1, t2 & t3 questionnaires; 2 participants completed only the t1, t2 & t4 questionnaires; 5 participants completed only the t1 & t2 questionnaires; and 3 participants completed only the t1 & t3 questionnaires). therefore, the above analysis includes only 18 comparison group participants. 1se – side effects abstract keywords funding source background methods study design recruitment sample 12-week transitional intervention quantitative measures quantitative data analysis qualitative data analysis results quantitative findings qualitative findings discussion conclusion references table 1: sociodemographic characteristics of sample (n = 65) table 2: study measures for intervention and comparison groups at baseline table 3: paired-samples t tests for study measures at baseline (t1) and mid-intervention (t2) for intervention and comparison groups table 4: paired-samples t tests for study measures at baseline (t1) and immediate post-intervention (t3) for intervention and comparison groups table 5: paired-samples t tests for study measures at immediate post-intervention (t3) and 4-weeks postintervention (t4) for intervention and comparison groups issn 2563-9269 139 migrants’ wellbeing and use of information and communication technologies jordana salma1, lalita kaewwilai1, savera aziz ali1 1faculty of nursing, university of alberta, alberta, canada corresponding author: j. salma (sjordana@ualberta.ca) abstract background: migrants use information and communication technologies [icts] to structure, mediate, and sustain transnational social connections. the impacts of ict use on migrants’ social lives and overall wellbeing is not well understood. methods: arksey and o'malley’s (2005) approach to scoping reviews was used and a thematic analysis was undertaken to synthesize relevant literature. findings: a total of 37 articles were identified for inclusion in this review. studies described a variety of ict-mediated transnational social activities and focused on one or more dimension of social, mental and emotional wellbeing. thematic analysis provided a description of: (a) barriers and facilitators of ict use in transnational contexts, (b) types of ict-mediated transnational activities; and (c) influences of ict use on migrants’ wellbeing. migrants’ connections with family, kin, and friends decreased stress, anxiety, and loneliness, and increased happiness, coping, and social support. expectations around remittances, emotional distress in times of crises, and differing expectations of ict-mediated relationships negatively influenced the wellbeing of migrants. visual technologies were shown to have the most tangible influences on wellbeing. conclusion: ict use is high in migrants and emotional, mental, and social wellbeing is clearly influenced by ictmediated relationships. further research is required to explore the intensity and conditions of these influences across different contexts, genders, and digital mediums. keywords information and communication technology, migrant, scoping review, social media, transnational, wellbeing introduction currently there are 272 million international migrants globally. these individuals are defined as any person who has changed their country of usual residence and includes mainly long-term immigrants, migrant workers and refugees (international organization for migration [iom], 2020). the wellbeing of migrants continues to be a focus of study with evidence of negative health outcomes in particular subpopulations (aldridge et al., 2018; bustamante et al., 2018; byrow et al., 2019; das-munshi et al., 2012; markides & rote, 2019; vang et al., 2017). despite variations in migrants’ experiences, discussions of their wellbeing often adopt a local lens and neglect transnational dimensions. migrants possess crossborder identities, ties, and commitments within transnational social, political, and economic spaces (levitt & jaworsky, 2007; schiller, 1994). information and communication technologies [icts] are increasingly used by migrants to structure, mediate, ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 and sustain these transnational dimensions of their lives (iom, 2020). technologization of migration is used to describe the emergence of the “connected migrant” (diminescu, 2008) and “new migration ecosystems” (fortunati et al., 2013). most significant is the emergence of accessible visual polymedia and social networking options that have amplified the copresence of migrants with distanced others (borkert et al., 2018). social connectedness relates to feelings of closeness, shared identities and common bonds, valuing relationships, and feeling socially involved, cared for and accepted (hare-duke et al., 2019; kohli et al., 2009; o'rourke & sidani, 2017). social connectedness created via ict use in migrant populations has been studied in relation to integration into host societies, connections with local ethnocultural communities, and transnational issn 2563-9269 140 linkages to left-behind communities (collin, 2012; collin et al., 2015; fortunati et al., 2013; murphy & mahalingam, 2004; oiarzabal & reips, 2012; samari, 2016; sanon et al., 2016; viruell-fuentes & schulz, 2009). being socially connected to one’s local community potentially decreases loneliness and social isolation, improves social capital and results in positive health outcomes (yiengprugsawan et al., 2018). little, however, is known about the way ictmediated social connections across transnational spaces influence dimensions of wellbeing. recent studies have begun to explore transnational influences on migrants’ wellbeing such as use of transnational healthcare (villa-torres et al., 2017), transnational caregiving (deneva et al., 2017), and cross-border identities and social networks (ferrer et al., 2017; samari, 2016). the ways ict use attenuates, expands, or mediates the relationships between wellbeing and migrants’ transnational lives has not been extensively explored in the health disciplines. this scoping review is a first step towards evaluating the scope of available knowledge on migrants’ ict use, wellbeing, and transnational social activities. purpose the purpose of this scoping study was to map the scope and range of research literature pertaining to ict use and related influences on wellbeing in the context of migrants’ transnational lives. methods this scoping review was organized into five stages described below and based on the arksey and o'malley (2005) and levac et al. (2010) frameworks: step 1: identification of the research question the first stage involved determining the scoping review question (arksey & o'malley, 2005; levac et al., 2010). key concepts related to the research question are: (a) “migrants”, (b) “information and communication technologies” defined as the range of digital and social media used for communication and access to information, (c) “transnational social connections” defined as the social connections migrants create and sustain across two or more nation states (basch et al.,1994); and, (d) “wellbeing” a multidimensional construct aimed at capturing ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 emotional, physical and psychosocial aspects of health (marsh et al., 2020). step 2: identification of relevant studies identifying relevant studies involves balancing the breadth and depth of the scoping review with feasibility (arksey & o'malley, 2005). we searched the following electronic databases: ovid medline, ovid embase, psycinfo, cinahl, socindex, cochrane library, scopus, web of science, sociological abstracts, and proquest dissertations & theses global. search phrases included various combinations of “migrant”, “immigrant”, “refugee”, “foreign/temporary worker”, “undocumented” and “transnational”, “diaspora” and “information and communication technology”, “technology”, “social media”, “social networking”. for non-health databases we added “health”, “wellness”, and “wellbeing” as search terms to limit our findings to references that address some dimension of wellbeing. an academic health sciences librarian at the university of alberta collaborated with the first author (js) to develop the search strategy and execute the searches. publications included in this review were limited to english language articles and published from inception to april 2019. we followed up our search of electronic databases with backward and forward reference searching of articles identified for inclusion. step 3: study selection study selection involved post hoc inclusion and exclusion criteria, based on increasing familiarity with the literature. these criteria are based on the specifics of the research question and new familiarity with the subject matter through reading the studies (arksey & o'malley, 2005). the selection of studies for inclusion was an iterative process, as recommended by levac et al. (2010), in which we searched the literature, refined the search strategy and inclusion criteria, and reviewed articles for inclusion (table 1). we used a three-step process for study selection, using the inclusion/exclusion criteria identified above. first two reviewers (lk, sa) screened the titles of all articles identified through electronic database searches and snowball sampling. second, the two reviewers (lk, sa) independently screened abstracts of articles included in step 1 for eligibility and issn 2563-9269 141 excluded those that did not mention selected migrant populations, ict use, or transnational social connections. reviewers met upon completion to compare results and resolve discrepancies which were resolved by the first author (js). two reviewers (lk, sa) then independently read the full texts of articles included in step 2 to identify articles that mention some aspect of wellbeing. these articles were included in the final set of chosen articles. if exclusion was suggested, it was confirmed by the third reviewer (js). this approach of reading full texts to determine references to wellbeing versus determining this at the abstract review stage was chosen to ensure that we captured the full range of possible articles. describing or measuring wellbeing is often not an explicit objective mentioned in the abstract of these articles. we used refworks to manage study selection and the review process with all references combined and saved in refworks. study selection is reported as per prisma guidelines in figure 1. step 4: charting the data the three reviewers extracted data from the full texts of articles included in the review using a standardized extraction form and descriptiveanalytical techniques (arksey & o'malley, 2005; levac et al., 2010). information was extracted from included studies using an excel spreadsheet identifying the characteristic of the studies. for each included article, we charted: author(s), year of publication, country of migration, country of emigration, population of interest, sample/size, study aim, methodology, types of icts used and related ict-mediated transnational social activities, and influence of ict utilization on wellbeing. step 5: collating, summarizing and reporting the results the final stage involved analysis of the data charted, reporting of results and determining the implications of findings (arksey & o'malley, 2005; levac et al., 2010), which was a collaborative process among all authors. a descriptive thematic analysis (braun & clarke, 2006; vaismoradi et al., 2013) was undertaken to synthesize the literature by using nvivo 10 data analysis software. we report below the types of studies included, followed by a thematic analysis of the main review findings. ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 results a total of 37 articles were included in our scoping review (table 2, table 3). all the articles were peerreview publications with the exception of three that were dissertations. articles spanned transnational contexts with the majority of studies focusing on the experiences of migrants to western and industrialized nations connecting to communities in the developing world. this pattern is consistent with the global flow of migrants (iom, 2020). the majority of studies were qualitative (n=31) with a minority of quantitative surveys and mixed method designs (n=6). all studies described different types of ictmediated transnational social activities and focused on one or more dimension of social, mental and emotional wellbeing. we describe below the main themes identified in the scoping review: (a) barriers and facilitators of ict use in transnational contexts, (b) types of ict-mediated transnational activities; and (c) influences of ict use on migrants’ wellbeing. barriers & facilitators of ict use in transnational contexts this review indicates an overall satisfaction with the use of ict to maintain transnational social connectivity due to the emergence of user-friendly low-cost applications with visual dimensions that enhance virtual co-presence with those left-behind in countries of origin. social media, such as skype, facebook, and whatsapp, were effective in promoting communication, sharing and gathering of information, and deepening of social relations between migrants and their transnational social networks (gonzalez & katz, 2016; khvorostianov et al., 2012; king‐o'rian, 2015; nedelcu, 2017; nedelcu & wyss, 2016; shoko, 2015; wilding, 2006). migrants reported using different forms of ict, often simultaneously, to facilitate these connections, including computers, smartphones, laptops, and tablets with a wide array of digital applications (ahlin, 2018; chib et al., 2014; farshbaf shaker, 2018; madianou, 2016). migrants who experienced barriers to internet connectivity, preferred to maintain transnational connections via phone calls which are increasingly cost-effective across the globe (farshbaf shaker, 2018; nedelcu & wyss, 2016; lin & sun, 2010). issn 2563-9269 142 barriers to using ict included prohibitive costs, lack of technology infrastructure in left-behind communities, logistical constraints, and low digital literacy of family members, especially older adults and those in rural settings. this review reinforced the fact that information and communication infrastructure is not equally distributed across global contexts with the most notable contrast between urban centers in the global north and rural communities in the global south (berg, 2007; chib et al., 2014; king‐o'rian, 2015; vancea and olivera, 2013; şenyürekli & detzner, 2009; walker, 2018). this lack of digital infrastructure in some contexts constrained migrants’ ability to connect with leftbehind communities. internet cafés, libraries, and workplaces emerged as supportive spaces that can facilitate technology access for migrants and those left-behind (baldassar, 2007; chib et al., 2014; king‐ o'rian, 2015; şenyürekli & detzner, 2009; wilding, 2006). early ict modes of communication via landline phones and email were expensive as they required owning a computer or phone and paying user fees for internet and phone access, with some participants reporting the need to actively limit their social contact with others or find additional sources of income to maintain these connections (berg, 2007; nedelcu & wyss, 2016). other participants reported that recent smartphone technologies and social media have eased some of the financial and logistical barriers due to the availability of free or low-cost digital applications (madianou, 2012; khvorostianov et al., 2012). older adults, overall, had lower digital literacy and poorer health which was likely to limit ict use in reported studies (ahlin, 2018; wilding, 2006; zhang, 2016). a facilitator of older adults’ adoption of ict identified related to social support from family and friends (ahlin, 2018; nedelcu, 2017; zhang, 2016). logistical challenges such as time zone differences, interruptions, data plan restrictions, and spotty connectivity meant that migrants and those in their social networks re-structured activities and behaviors to facilitate timely and consistent social contact (berg, 2007; harney, 2013). at times, this re-structuring involved financial and resource intensive commitments especially on the part of the migrant (aguila, 2009; ahlin, 2018; berg, 2007; madianou, 2012; walker, 2018). overall, migrants are shown in ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 this review to be resourceful and to allocate a significant amount of time and financial resources to using icts for transnational social connectivity and, in turn, facilitating the adoption of ict in left-behind communities. types of ict-mediated transnational social activities ict-mediated transnational social connections were described across one or more of the following three areas: (a) parenting and caregiving, (c) maintaining social connections, defined as habitual and sustained contact with family, kin, and social contacts in the emigration context; and (d) participation in life events, defined as intermittent conditions of intense contact for an emergent purpose. parenting and caregiving: parenting of dependent children and family caregiving of older parents and grandparents were two ict-mediated transnational social activities characterized by consistent virtual copresence with the intensity of co-presence increasing in crisis situations (aguila, 2009). this co-presence can be described as involvement in the day-to-day happenings, fluctuations, and decision-making within transnational families. terms such as “keep-up”, “check-in”, “keep-track”, and “monitor” were frequently cited by participants in the reviewed studies as a characteristic of their daily connectivity, especially with children (berg, 2007; chib et al., 2014; lin & sun, 2010; şenyürekli & detzner, 2009). often this co-presence with dependents involved a continuation of the parenting role at a distance through provision of practical and emotional support. most studies involved migrant mothers versus fathers. a dimension of surveillance was noted through monitoring homework and chores, reprimanding misbehavior, and following up on health concerns (aguila, 2009; brown, 2016; chib et al., 2014; madianou, 2014; madianou, 2016; ryan et al., 2015; thomas & lim, 2017). emotional support involved attending to children’s changes in mood, showing love and affection, and maintaining parental bonds (brown, 2016; chib et al., 2014; francisco, 2015; madianou, 2012). issn 2563-9269 143 for caregiving of older parents and grandparents, practical support in the form of following up on health concerns and monitoring proxy caregivers were most notable across studies (baldassar, 2016; nedelcu, 2017). in addition, new ways of enacting filial piety were demonstrated through frequent calls to aging parents versus in-person visits and co-habitation (ahlin, 2018; nedelcu & wyss, 2016; zhang, 2016). parenting and caregiving activities were enhanced via visual elements of technology such as webcams and skype allowing migrants to evaluate non-verbal cues, monitor the household, and visualize daily happenings and rituals in real time (francisco, 2015; gonzalez & katz, 2016; king‐o'riain, 2015; madianou, 2012; ryan et al., 2015; vancea & olivera, 2013). maintaining social connections: connecting with relatives, kin, and friends in emigration contexts was reported across studies to keep well-informed of local events, sustain emotional closeness, facilitate provision of tangible supports, and maintain migrants sense of belonging and identity (chen, 2010; chib et al., 2013; harney, 2013; heikkinen & lumme-sandt, 2013; kim, 2016; khvorostianov et al., 2012; lin & sun, 2010; madianou, 2016; park, 2016; ryan et al., 2015; şenyürekli & detzner, 2009; vancea & olivera, 2013; wilding, 2006; zhang, 2016). transnational families used ict to communicate both good news (e.g., birth, wedding, graduation) and bad news (e.g. illness, death) (adugna, 2018; baldassar, 2007; baldassar, 2014; wilding, 2006). this enhanced the sense of closeness between migrants, families, and extended social networks (baldassar, 2007; vancea & olivera, 2013) and helped maintain social ties between geographically disparate community members (withaeckx et al., 2015). intergenerational aspects included connecting with grandchildren to practice the mother-tongue and build emotional bonds (baldassar, 2016; king‐o'riain, 2015). migrants used different forms of multimedia to maintain this connectivity considering the effects of cost, accessibility for themselves and emigrant communities, and level of intimacy allowed via different technology mediums (aguila, 2009; ryan et al., 2015; vancea & olivera, 2013). connectivity also allowed migrants to fulfill expectations of reciprocity that characterize many migrant relationships with communities in countries of origin (berg, 2007; madianou, 2014; thomas & lim, 2017). ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 participation in life events: for migrants who could not return to their communities of origin, ict facilitated connectivity during important life events such as offering best wishes during births and weddings, condolences for a death, and virtual attendance at ceremonies and rituals (baldassar, 2014; bravo, 2017; şenyürekli & detzner, 2009; wilding, 2006). the need to engage in transnational communication was heightened when a family experienced a crisis, such as the illness or death of a loved one, and this was characterized by a period of intense connectivity until the crisis passed (baldassar, 2014; bravo, 2017; gonzalez & katz, 2016). adugna (2018) noted that ethiopian elders used ict to solve inter-tribal tensions between transnational families and migrant workers in south africa; while immigrants in brown's (2016) study used a facebook page to publicize a fundraising campaign for educational and infrastructural projects to support children and families affected by a natural disaster in their home country. migrants across studies in this review were able to create networks of solidarity and support that were called upon in times of crisis and ict facilitated information sharing and the provision of support during these times. notable in reviewed studies was that the direction of financial supports in times of crisis flowed mainly from migrants to leftbehind communities while the exchange of emotional support was often reported as being bi-directional. influences of ict use on migrants’ wellbeing the two areas where wellbeing was explicitly referenced in this review were in relation to maintaining valued social roles and relationships and receiving social support from left-behind communities. social support refers to the actual and perceived emotional, informational, and practical assistance people receive from significant others in their lives (cohen, 2004). two themes were identified to describe the influences of ict use on migrants’ wellbeing: (a) role maintenance versus disruption, and (b) reciprocal channels of social support. role maintenance versus disruption: the heightened ability of migrants to connect with family and kin in countries of origin allowed for the continuation of social roles and obligations that would be expected if they were still in proximity. this continuation depended on the effective use of ict which mediated these relationships. migrants reported feeling issn 2563-9269 144 empowered in their ability to continue their roles as parents of young children (berg, 2007; brown, 2016; chib et al., 2014; francisco, 2015) or caregivers of elderly parents (ahlin, 2018; baldassar, 2014; farshbaf shaker, 2018; nedelcu & wyss, 2016; zhang, 2016). parenting and caregiving were where the most impact on wellbeing via sustained and intense ictmediated role continuation was evident. migrants reported enhanced emotional wellbeing due to satisfaction with their ability to continue these roles and maintain valued dimensions of identity tied to these roles (aguila, 2009; baldassar, 2016; farshbaf shaker, 2018; madianou, 2012; nedelcu & wyss, 2016; zhang, 2016). ict, also, facilitated coping with the stressors of migration by creating a sense of comfort and family solidarity (brown, 2016; farshbaf shaker, 2018; nedelcu & wyss, 2016). image-based icts were used to strengthen family bonds between parents and their migrant children and grandchildren and was especially relevant in enhancing feelings of intimacy (ahlin, 2018; francisco, 2015; nedelcu & wyss, 2016; park, 2016). the perceived benefits from enhanced co-presence via image-based icts surpassed that of other icts, such as email, reported in other studies (wilding, 2006). social roles, however, could also be disrupted pointing to the inadequacy of ict-mediated role continuation in particular instances. self-censorship was often reported by families and migrants where this dual process of censorship limited reciprocal emotional support and comfort during stressful times (aguila, 2009; baldassar, 2007; chib et al., 2014; walker, 2018). image-based icts could be painful reminders of the absence of loved ones and were sources of distress for some who could not engage in the physical tasks of care such as caressing a loved one or sharing a meal (baldassar, 2014; brown, 2016; wilding, 2006). in times of crises, ict-mediated communication was a source of timely updates that either relieved anxieties when migrants were able to provide emotional or material supports (baldassar, 2014; bravo, 2017; díaz andrade & doolin, 2019; gonzalez & katz, 2016; nedelcu & wyss, 2016; shoko, 2015; withaeckx et al., 2015) or aggravated anxieties when support was constrained (chib et al., 2014). tensions between proxy caregivers and migrants required ongoing management via ict to ensure the needs of proxy caregivers, which were often financial, and the needs of left-behind children were met while simultaneously managing the emotional distress of ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 delegating valued parenting/caregiving tasks to others (chib et al., 2014; francisco, 2015; madianou, 2012). finally, distress was reported by migrant parents whose children resisted ongoing and intense ict-mediated connectivity (berg, 2007) and by migrant children pressured to maintain connectivity with family in countries of origin (gonzalez & katz, 2016). overall, the above examples point to the positive and negative impacts of ict-based role maintenance across transnational contexts on the wellbeing of migrants. it is evident that icts, especially imagebased icts, are central to families’ ability to maintain a sense of normalcy and co-presence. it is equally evident that anxiety and stress can emerge when challenges are witnessed that cannot be addressed at a distance or when a mismatch exists between the expectations of migrants and those left-behind. reciprocal channels of social support: daily connections with family, kin, and friends were maintained through social media and mobile chat applications with reports of general satisfaction with using these tools (farshbaf shaker, 2018; gonzalez & katz, 2016; madianou, 2016; şenyürekli & detzner, 2009). polymedia, the use of different types of imagebased icts to enhance and sustain virtual copresence, was shown to have a clear and positive impact on migrants’ reports of emotional support (baldassar, 2016; brown, 2016; díaz andrade & doolin, 2019; farshbaf shaker, 2018; francisco, 2015; king‐o'riain, 2015; shoko, 2015; thomas & lim, 2017; walker, 2018; wilding, 2006). during the migration transition, migrants encountered various challenges related to loneliness, homesickness, and settlement barriers in a new environment. emotional support, practical advice, and financial support to manage the hardships of migration were provided by left-behind family and enhanced migrants’ selfreported resilience (baldassar, 2007; díaz andrade & doolin, 2019; farshbaf shaker, 2018; gonzalez & katz, 2016; kim, 2016; king‐o'rian, 2015; ryan et al.,2015; shoko, 2015; withaeckx et al., 2015; zhang, 2016). ict-mediated connectivity resulted in a reported decrease in feelings of stress, isolation and loneliness (harney, 2013; khvorostianov et al., 2012; lin and sun, 2010; shoko, 2015; vancea & olivera, 2013; withaeckx et al., 2015; zhang, 2016), supported adaptation in the host country (chen, 2010), and issn 2563-9269 145 enhanced feelings of positive identity, belonging and validation (lam, 2014; park, 2016). happiness and satisfaction were reported by migrants who used facebook, for example, to connect with left-behind friends and relatives (gonzalez & katz, 2016). additionally, migrants reported maintaining professional and cultural identities through connecting with friends and engaging in social media platforms focused on their diverse interests (brown, 2016; khvorostianov et al., 2012; lin & sun, 2010; park, 2016; withaeckx et al., 2015). migrants, also, utilized ict to access information via their social networks about the migration process, health, employment, as well as to communicate personal, social, and political news between emigration and migration contexts (king‐o'riain, 2015; khvorostianov et al., 2012; vancea & olivera, 2013; walker, 2018; zhang, 2016). in some cases, the internet and social media was used to communicate discrete and unofficial information on emerging events (brown, 2016; şenyürekli & detzner, 2009; shoko, 2015). the one study that focused on a gender differences in ict use and related outcomes showed that women were more likely to receive instrumental, emotional, and informational sources of social support than their male migrant counterpart (chib et al., 2013). in the same study, women reported less stress due to received emotional support but this positive effect was not observed in men. access to social support across transnational contexts required migrants manage the cost and time needed to access technology and be attentive to the struggles, stressors, and needs of those left behind (berg, 2007; nedelcu & wyss, 2016; ryan et al., 2015). ict can make it difficult for migrants to escape expectations of reciprocity within familial and kin networks which was the main reported source of stress with ict use for transnational social connectivity (madianou, 2012). overall, studies show positive impacts of ictuse for the exchange of transnational social support between migrants and left-behind communities with a number of stressors emerging where the net impact on wellbeing is unknown and requires further exploration. ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 discussion migrants connected with family, kin, and friends reported outcomes of decreased stress, anxiety, loneliness, and increased happiness, coping, and access to information and material supports in times of need. on the other hand, particular migrant experiences such as expectations of reciprocity that could not be met, virtual co-presence enhancing emotional distress in times of crisis, and differing expectations around the intensity and quality of ictmediated relationships were all reported to negatively influence the wellbeing of migrants. migrants, also, experienced stressors in access and use of icts where the burden to “connect” often fell on the migrant who was perceived to have more resources than those in left-behind communities. additionally, this review points to the critical role of digital infrastructure in emigration contexts on the extent and types of icts adopted by migrants with evidence that the digital divide across the global south and north and between rural and urban contexts persists (iom, 2020). only one study in this review focused on comparing wellbeing outcomes across genders in relation to ict use and transnational social activities with women reporting more frequent ict-mediated contact and more perceived support than their male counterparts. a number of studies, although not referencing wellbeing explicitly, discuss the influences of transnational ict use on gendered, cultural, and structural aspects of familial and social relationships (cabanes & acedera, 2012; barakji et al., 2019; hsu, 2018), while some studies have looked specifically at the gendered dimensions of wellbeing and transnational relationships (afulani et al., 2016; amoyaw & abada; 2016). the review highlights the need to consider the impact of ict on transnational social roles and relationships with a focus on gender dynamics and power relations. beyond gender as a single factor, this review shows some of the ways other factors such as age, socioeconomic status, and rural/urban divide shape experiences of ict use in transnational contexts. intersectional perspectives address the influences of multiple social identities and locations on outcomes of privilege or oppression in people’s lives (anthias, 2012; crenshaw, 1991) and can be useful approaches to looking at the nonmutually exclusive categories of identity and issn 2563-9269 146 belonging as they are shaped by particular transnational experiences. areas for future research include the need to conduct studies with the explicit objective of understanding the influence of ict on wellbeing in migrant populations. these studies need to quantify the intensity and forms of ict-mediated transnational activities and the types of digital tools used for these activities in relation to measures of wellbeing, which will require creative solutions to address methodological challenges (alinejad et al., 2019; vancea & àlex, 2014). the impact of visual or image-based technologies on wellbeing seems the most tangible across reviewed studies and with the proliferation of accessible and affordable social media platforms comes the need to determine which dimensions of wellbeing are most influenced. finally, this review did not focus on the perspectives of those left behind and their communication patterns, preferences, and related influences on wellbeing. evidence shows both positive and negative influences on wellbeing for leftbehind communities (benítez, 2012; horst, 2006), and further evaluation of this dimension of transnational connectivity is warranted. implications icts have allowed relationships between migrants and distanced others to diversity and intensify with tangible implications for the migration experience (collin, 2012). however, further exploration is required on how to best support this transnational dimension of migrants’ lives to facilitate positive psychosocial experiences post-migration (bacigalupe & cámara, 2012). facilitating migrants’ access to ict and building digital competence might enhance the mental and emotional wellbeing of migrant populations via access to transnational channels of social support. digital competence is defined as “the combination of knowledge, skills, and attitudes with regards to the use of technology to perform tasks, solve problems, communicate, manage information, and collaborate...” (skov, 2016). digital learning interventions are most needed for vulnerable groups of migrants such as newcomers, older adults, women, and those with lower levels of education and socioeconomic resources (haight et al., 2014; fang et al., 2019). this review points to key factors to consider in developing digital learning interventions. while local barriers and facilitators to ict adoption ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 are identified in the literature (collin & karsenti, 2012; felton, 2015), additional influences include digital infrastructure in countries of origin and norms and expectations around technology use. also, this review points to the ability to connect with leftbehind communities as a strong motivator for adopting digital technologies and can encourage digital learning; this finding is mirrored in other studies (kabbar & crump, 2006; millard et al., 2018). finally, the review describes connections between ict use and dimensions of migrants’ wellbeing postmigration which raises the need for further exploration of the nature, pathways and intensity of these relationships. the mental health impacts of participating at a distance in the lives of those left behind, especially during times of crisis, needs further exploration. the impacts on wellbeing might be more severe for migrants who experience socio-economic deprivation, have precarious migration status and in contexts where migration policies limit transnational movement. limitations a significant limitation of this study relates to our definition of wellbeing. wellbeing is a multidimensional construct with both subjective and objective measures that differ widely across disciples and research contexts (marsh et al., 2020). our review focused on subjective wellbeing related to emotional, mental, and social dimensions, such as presence of positive emotions (happiness), absence of negative emotions (stress, anxiety, loneliness), availability of social support and presence of positive relationships. we acknowledge that a broader definition of wellbeing, such as one that includes objective circumstances, might capture a wider array of literature on the topic. we, also, acknowledge the subjective nature of determining which studies to include in this review based on what constituted an adequate description of migrants’ wellbeing. only one study explicitly measured wellbeing as an outcome and the majority of studies were from the non-health literature and qualitative in nature. we see this review as a starting point to developing a conceptual framework of wellbeing in the context of transnational connectivity and ict use similar to the discussion of skrbiš (2008) on conceptualizing “emotions’ in the transnational ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 issn 2563-9269 147 sphere of relationships. finally, we recognize that migrants exist on a “low mobility-high mobility continuum” (diminescu, 2008) and, hence, the included migrant categories reflect a range of statuses along this continuum. excluded from this review were particular populations that might have unique experiences with ict use that warrant exploration such as internally displaced individuals and international students. conclusion this review is a preliminary exploration of the scope and range of literature on ict use for transnational social connectivity and wellbeing. the review shows that ict use is high across migrant populations, but that experiences and challenges differ based on intersecting factors within local and transnational contexts. the review, also, shows that emotional, mental, and social wellbeing are influenced by ict use in relation to maintaining transnational social relationships and continuing valued social roles and responsibilities. the connections amongst intensity of ict use, forms of ict, and outcomes of wellbeing in the transnational context will continue to be a relevant and emerging area for exploration. references adugna, g. (2018). the dynamics of transnational family relations and remittance flow in ethiopia. population, space and place, 24(5), 01-10. doi.org/10.1002/psp.2126. afulani, p. a., torres, j. m., sudhinaraset, m., & asunka, j. (2016). transnational ties and the health of sub-saharan african migrants: the moderating role of gender and family separation. social science & medicine, 168, 63-71. doi: 10.1016/j.socscimed.2016.09.009. aguila, a. p. n. (2009), living long-distance relationships through computer-mediated communication. social science diliman, 5(12), 83-106. retrieved from: http://journals.upd.edu.ph/index.php/socia lsciencediliman/article/view/2045/1955 ahlin, t. (2018). only near is dear? doing elderly care with everyday icts in indian transnational families. medical anthropology quarterly, 32(1), 85-102. doi.org/10.1111/maq.12404. aldridge, r. w., nellums, l. b., bartlett, s., barr, a. l., patel, p., burns, r. and friedland, j. s. (2018). global patterns of mortality in international migrants: a systematic review and meta analysis. lancet, 392(10164). 2553-2566. doi: 10.1016/s0140-6736(18)32781-8 alinejad, d., candidatu, l., mevsimler, m., minchilli, c., ponzanesi, s. and vander vlist, f. n. (2019). diaspora and mapping methodologies: tracing transnational digital connections with mattering maps. global networks, 19(1), 21-43. doi.org/10.1111/glob.12197 amoyaw, j. a. and abada, t. (2016). does helping them benefit me? examining the emotional cost and benefit of immigrants' pecuniary remittance behaviour in canada. social science & medicine, 153, 182-192. doi.org/10.1016/j.socscimed.2016.02.007 anthias, f. (2012). hierarchies of social location, class, and intersectionality: towards translocational framework. international sociology, 28(1), 121-138. doi.org/10.1177/0268580912463155 arksey, h. & o'malley, l. (2005). scoping studies: towards a methodological framework. international journal of social research methodology, 8(1), 19-32. doi.org/10.1080/1364557032000119616 bacigalupe, g. and cámara, m. (2012). transnational families and social technologies: reassessing immigration psychology. journal of ethnic and migration studies, 38(19), 1425-1438. doi.org/10.1080/1369183x.2012.698211 baldassar, l. (2007). transnational families and the provision of moral and emotional support: the relationship between truth and distance. identities: global studies in culture and power, 14(4), 385-409. doi.org/10.1080/10702890701578423 baldassar, l. (2014). too sick to move: distant ‘crisis’ care in transnational families. international review of sociology, 24(3), 391-405. doi.org/10.1080/03906701.2014.954328 baldassar, l. (2016). de‐demonizing distance in mobile family lives: co‐presence, care circulation and polymedia as vibrant matter. global networks, 16(2), 145-163. doi.org/10.1111/glob.12109 https://doi.org/10.1002/psp.2126 https://doi.org/10.1016/j.socscimed.2016.09.009 https://doi.org/10.1111/maq.12404 https://doi.org/10.1016/s0140-6736(18)32781-8 https://doi.org/10.1111/glob.12197 https://doi.org/10.1016/j.socscimed.2016.02.007 https://doi.org/10.1177%2f0268580912463155 https://doi.org/10.1080/1364557032000119616 https://doi.org/10.1080/1369183x.2012.698211 https://doi.org/10.1080/10702890701578423 https://doi.org/10.1111/glob.12109 ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 issn 2563-9269 148 barakji, f., maguire, k. c., reiss, h., gaule, j., smith, n., pelliccio, l. and oshagan, h. (2019). cultural and transnational influences on the use of information communication technologies in adult long-distance family relationships: an extension of media multiplexity theory. journal of family communication, 19(1), 30-46. doi.org/10.1080/15267431.2018.1530675 basch, l., glick schiller, n. and szanton blanc, c. (1994). nations unbound: transnational projects, postcolonial predicaments, and deterritorialized nation states. routledge taylor and francis group. benítez, j. l. (2012). salvadoran transnational families: ict and communication practices in the network society. journal of ethnic and migration studies, 38(9), 1439 -1449. doi.org/10.1080/1369183x.2012.698214 berg, u. d. (2007). mediating self and community: membership, sociality, and communicative practices in peruvian migration to the united states (3284266). [doctoral dissertation, new york university]. proquest dissertations publishing. borkert, m., cingolani, p. and premazzi, v. (2009). the state of the art of research in the eu on the take up and use of ict by immigrants and ethnic minorities. jrc working papers jrc53398, joint research centre (seville site). retrieved from: https://ideas.repec.org/p/ipt/iptwpa/jrc533 98.html borkert, m., fisher, k. e. and yafi, e. (2018). the best, the worst, and the hardest to find: how people, mobiles, and social media connect migrants in (to) europe. social media & society, 4(91), 1-11. doi.org/10.1177/2056305118764428 braun, v. and clarke, v. (2006). using thematic analysis in psychology. qualitative research in psychology, 3(2), 77-101. doi: 10.1191/1478088706qp063oa bravo, v. (2017). coping with dying and deaths at home: how undocumented migrants in the united states experience the process of transnational grieving. mortality, 22(1), 3344. doi.org/10.1080/13576275.2016.1192590 brown, r. h. (2016). multiple modes of care: internet and migrant caregiver networks in israel. global networks, 16(2), 237-256. doi.org/10.1111/glob.12112 bustamante, l. h., cerqueira, r. o., leclerc, e. and brietzke, e. (2018). stress, trauma, and posttraumatic stress disorder in migrants: a comprehensive review. brazilian journal of psychiatry, 40(2), 220-225. doi: 10.1590/1516-4446-2017-2290 byrow, y., pajak, r., specker, p. and nickerson, a. (2019). perceptions of mental health and perceived barriers to mental health helpseeking amongst refugees: a systematic review. clinical psychology review, 75,1-22. doi: 10.1016/j.cpr.2019.101812. cabanes, j. v. a. and acedera, k. a. f. (2012). of mobile phones and mother-fathers: calls, text messages, and conjugal power relations in mother-away filipino families. new media and society,14(6), 916-930. doi.org/10.1177/1461444811435397 chen, w. (2010). internet-usage patterns of immigrants in the process of intercultural adaptation. cyberpsychology, behavior, and social networking, 13(4), 387-399. doi.org/10.1089/cyber.2009.0249 chib, a., malik, s., aricat, r. g. and kadir, s. z. (2014). migrant mothering and mobile phones: negotiations of transnational identity. mobile media and communication, 2(1), 7393. doi.org/10.1177/2050157913506007 chib, a., wilkin, h. a. and hua, s. r. m. (2013). international migrant workers’ use of mobile phones to seek social support in singapore. information technologies & international development, 9(14), 19-34. retrieved from: https://itidjournal.org/index.php/itid/article /download/1122/1122-3129-1-pb.pdf cohen, s. (2004). social relationships and health. american psychologist, 59(8), 676-684. doi.org/10.1037/0003 collin, s. (2012). icts and migration: the mapping of an emerging research field. international journal of technology, knowledge, and society, 8(2), 65-78. retrieved from: http://archipel.uqam.ca/id/eprint/12247 collin, s. and karsenti, t. (2012). facilitating linguistic integration of immigrants: an overview of https://psycnet.apa.org/doi/10.1080/15267431.2018.1530675 https://doi.org/10.1177%2f2056305118764428 https://doi.org/10.1191/1478088706qp063oa https://doi.org/10.1080/13576275.2016.1192590 https://doi.org/10.1111/glob.12112 https://psycnet.apa.org/doi/10.1177/1461444811435397 https://psycnet.apa.org/doi/10.1089/cyber.2009.0249 https://doi.org/10.1177%2f2050157913506007 https://psycnet.apa.org/doi/10.1037/0003-066x.59.8.676 http://archipel.uqam.ca/id/eprint/12247 ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 issn 2563-9269 149 ict tools. issues in informing science and information technology, 9, 243-251. doi.org/10.28945/1619 collin, s., karsenti, t. and calonne, o. (2015). migrants’ use of technologies: an overview of research objects in the field. journal of technologies and human usability, 10(3-4), 15-29. doi:10.18848/2381-9227/cgp/v10i34/56424 crenshaw, k. (1991). mapping the margins: intersectionality, identity politics, and violence against women of color. stanford law review,43(6), 1241-1299. doi.org/10.2307/1229039 das-munshi, j., leavey, g., stansfeld, s. and prince, m. (2012). migration, social mobility and common mental disorders: critical review of the literature and meta-analysis. ethnicity & health,17(1-2), 17-53. doi: 10.1080/13557858.2011.63216 deneva, n., zhou, y. r., yarris, k. e., raffety, e. l., khan, m. m., kobayashi, k., . . . mullings, d. v. (2017). transnational aging and reconfigurations of kin work. rutgers university press. díaz andrade, a. and doolin, b. (2019). temporal enactment of resettled refugees' ict‐ mediated information practices. information systems journal, 29(1), 145-174. doi.org/10.1111/isj.12189 diminescu, d. (2008). the connected migrant: an epistemological manifesto. social science information, 47(4), 565-579. doi.org/10.1177/0539018408096447 fang, m. l., canham, s. l., battersby, l., sixsmith, j., wada, m. and sixsmith, a. (2019). exploring privilege in the digital divide: implications for theory, policy, and practice. gerontologist, 59(1), 1-15. doi: 10.1093/geront/gny037 farshbaf shaker, s. (2018). a study of transnational communication among iranian migrant women in australia. journal of immigrant & refugee studies, 16(3), 293-312. doi.org/10.1080/15562948.2017.1283078 felton, e. (2015). migrants, refugees and mobility: how useful are information communication technologies in the first phase of resettlement? journal of technologies in society, 1(1),1-13. doi: 10.18848/2381-9251/cgp/v11i01/56496. ferrer, i., brotman, s. and grenier, a. (2017). the experiences of reciprocity among filipino older adults in canada: intergenerational, transnational, and community considerations. journal of gerontological social work, 60(4), 313-327. doi: 10.1080/01634372.2017.1327916 fortunati, l., pertierra, r. and vincent, j. (2013), migration, diaspora and information technology in global societies, routledge. francisco, v. (2015). “the internet is magic”: technology, intimacy and transnational families. critical sociology, 41(1), 173-190. doi.org/10.1177/0896920513484602 gonzalez, c. and katz, v. s. (2016). transnational family communication as a driver of technology adoption, international journal of communication, 10, 1-21. retrieved from: https://www.semanticscholar.org/paper/tr ansnational-family-communication-as-adriver-of-gonzálezkatz/00911c1deb8fd5afec3a1d8cbf882ce47 d279175 haight, m., quan-haase, a. and corbett, b. a. (2014), revisiting the digital divide in canada: the impact of demographic factors on access to the internet, level of online activity, and social networking site usage. information, communication & society, 17(4), 503-519. doi.org/10.1080/1369118x.2014.891633 hare-duke, l., dening, t., de oliveira, d., milner, k. and slade, m. (2019). conceptual framework for social connectedness in mental disorders: systematic review and narrative synthesis. journal of affective disorders, 245, 188-199. doi:10.1016/j.jad.2018.10.359 harney, n. (2013). precarity, affect and problem solving with mobile phones by asylum seekers, refugees and migrants in naples, italy. journal of refugee studies, 26(4), 541557. doi.org/10.1093/jrs/fet017 heikkinen, s. j. and lumme-sandt, k. (2013). transnational connections of later-life migrants. journal of aging studies, 27(42), 198-206. doi: 10.1016/j.jaging.2013.02.002 horst, h. a. (2006). the blessings and burdens of communication: cell phones in jamaican https://doi.org/10.28945/1619 http://dx.doi.org/10.18848/2381-9227/cgp/v10i3-4/56424 http://dx.doi.org/10.18848/2381-9227/cgp/v10i3-4/56424 https://doi.org/10.2307/1229039 https://doi.org/10.1080/13557858.2011.632816 https://doi.org/10.1111/isj.12189 https://doi.org/10.1177%2f0539018408096447 https://doi.org/10.1093/geront/gny037 https://doi.org/10.1080/15562948.2017.1283078 https://doi.org/10.1080/01634372.2017.1327916 https://doi.org/10.1177%2f0896920513484602 https://doi.org/10.1080/1369118x.2014.891633 https://doi.org/10.1016/j.jad.2018.10.359 https://doi.org/10.1093/jrs/fet017 ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 issn 2563-9269 150 transnational social fields. global networks, 6(2), 143-159. doi: 10.1111/j.1471-0374.2006.00138.x hsu, j. (2018). negotiating gendered media: learning icts in transnational taiwanese families. continuum, 32(2), 239-249. doi.org/10.1080/10304312.2017.1409341 international organization for migration [iom]. (2020). world migration report, 2020, viewed 01 march 2020.retreieved from: https://www.iom.int/ kabbar, e. f. and crump, b. j. (2006). the factors that influence adoption of icts by recent refugee immigrants to new zealand. informing science, 9, 1-11. doi.org/10.28945/475 khvorostianov, n., elias, n. and nimrod, g. (2012), “without it i am nothing’: the internet in the lives of older immigrants. new media & society,14(4), 583-599. doi.org/10.1177/1461444811421599 kim, t. s. (2016). transnational communication practices of unaccompanied young korean students in the united states. asian and pacific migration journal, 25(2), 148-167. doi.org/10.1177/0117196816639055 king‐o'riain, r. c. (2015). emotional streaming and transconnectivity: skype and emotion practices in transnational families in ireland. global networks, 15(2), 256-273. doi.org/10.1111/glob.12072 kohli, m., hank, k. and künemund, h. (2009). the social connectedness of older europeans: patterns, dynamics and contexts. journal of european social policy, 19(4), 327-340. doi.org/10.1177/1350506809341514 lam, w. s. e. (2014). literacy and capital in immigrant youths' online networks across countries. learning, media and technology, 39(4), 488506 doi.org/10.1080/17439884.2014.942665 levac, d., colquhoun, h. and o'brien, k. k. (2010). scoping studies: advancing the methodology. implementation science, 5(69), 1-9. doi.org/10.1186/1748-5908-5-69 levitt, p. and jaworsky, b. n. (2007). transnational migration studies: past developments and future trends. annual review sociology, 33, 129-156. doi.org/10.1146/annurev.soc.33.040406.13 1816 lin, t. t. c. and sun, s. h. l. (2010). connection as a form of resisting control: mobile phone usage of foreign domestic workers in singapore. media asia: an asian communication quarterly, 37(4), 183-214. retrieved from: https://citeseerx.ist.psu.edu/viewdoc/down load?doi=10.1.1.700.5055&rep=rep1&type= pdf madianou, m. (2012). migration and the accentuated ambivalence of motherhood: the role of icts in filipino transnational families.global networks, 12(3), 277 -295. doi: 10.1111/j.1471-0374.2012.00352.x madianou, m. (2014). smartphones as polymedia. journal of computer-mediated communication, 19(3), 667-680. doi:org/10.1111/jcc4.12069 madianou, m. (2016). ambient co‐presence: transnational family practices in polymedia environments. global networks, 16(2), 183201. doi.org/10.1111/glob.12105 markides, k. s. and rote, s. (2019). the healthy immigrant effect and aging in the united states and other western countries. gerontologist, 59(2), 205-214. doi: 10.1093/geront/gny136. marsh, h. w., huppert, f. a., donald, j. n., horwood, m. s. and sahdra, b. k. (2020). the well-being profile (wb-pro): creating a theoretically based multidimensional measure of wellbeing to advance theory, research, policy, and practice. psychological assessment, 32(3), 294–313. doi:10.1037/pas0000787 millard, a., baldassar, l. and wilding, r. (2018). the significance of digital citizenship in the wellbeing of older migrants. public health,158, 144-148. doi: 10.1016/j.puhe.2018.03.005 murphy, e. j. and mahalingam, r. (2004). transnational ties and mental health of caribbean immigrants. journal of immigrant health, 6(4), 167-178. doi.org/10.1023/b:joih.0000045254.71331. 5e http://dx.doi.org/10.1111/j.1471-0374.2006.00138.x https://doi.org/10.1080/10304312.2017.1409341 https://www.iom.int/ https://doi.org/10.28945/475 https://doi.org/10.1177%2f1461444811421599 https://doi.org/10.1177%2f0117196816639055 https://doi.org/10.1111/glob.12072 https://doi.org/10.1177%2f1350506809341514 https://doi.org/10.1080/17439884.2014.942665 https://doi.org/10.1186/1748-5908-5-69 https://psycnet.apa.org/doi/10.1146/annurev.soc.33.040406.131816 https://psycnet.apa.org/doi/10.1146/annurev.soc.33.040406.131816 https://doi.org/10.1111/jcc4.12069 https://doi.org/10.1111/glob.12105 http://dx.doi.org/10.1037/pas0000787 https://doi.org/10.1016/j.puhe.2018.03.005 https://doi.org/10.1023/b:joih.0000045254.71331.5e https://doi.org/10.1023/b:joih.0000045254.71331.5e ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 issn 2563-9269 151 nedelcu, m. (2017). transnational grandparenting in the digital age: mediated co-presence and childcare in the case of romanian migrants in switzerland and canada, european journal of ageing, 14(4), 375-383. doi: 10.1007/s10433-017-0436-1 nedelcu, m. and wyss, m. (2016). doing family through ict‐mediated ordinary co‐presence: transnational communication practices of romanian migrants in switzerland. global networks, 16(2), 202-218. doi.org/10.1111/glob.12110 o'rourke, h. m. and sidani, s. (2017). definition, determinants, and outcomes of social connectedness for older adults: a scoping review. journal of gerontological nursing, 43(7), 43-52. doi: 10.3928/00989134-20170223-03 oiarzabal, p. j. and reips, u.-d. (2012). migration and diaspora in the age of information and communication technologies. journal of ethnic and migration studies, 38(9), 13331338. doi.org/10.1080/1369183x.2012.698202 park, j. (2016). (re) constructing ethnic identities: digital media as an important platform among the children of korean immigrants in the us (10138164). [doctoral dissertation, southern illinois university] proquest dissertations publishing. ryan, l., klekowski von koppenfels, a. and mulholland, j. (2015). the distance between us: a comparative examination of the technical, spatial and temporal dimensions of the transnational social relationships of highly skilled migrants. global networks, 15(2),198-216. doi.org/10.1111/glob.12054 samari, g. (2016). cross-border ties and arab american mental health. social science & medicine, 155, 93-101. doi: 10.1016/j.socscimed.2016.03.014 sanon, m.-a., spigner, c. and mccullagh, m. c. (2016). transnationalism and hypertension selfmanagement among haitian immigrants. journal of transcultural nursing, 27(2), 147156. doi: 10.1177/1043659614543476 schiller, n. g. (1994). introducing identities: global studies in culture and power. identities, 1(1), 1-6. doi.org/10.1080/1070289x.1994.9962492 şenyürekli, a. r. and detzner, d. f. (2009). communication dynamics of the transnational family. marriage & family review, 45(6-8), 807-824. doi.org/10.1080/01494920903224392 shoko, m. (2015). home sweet home: an analysis of adaptation mechanisms used by zimbabwean migrants in south africa. journal of social development in africa, 30(1), 7-29. doi.org/10.1080/01494920903224392 thomas, m., & lim, s. s. (2017). ict use and female migrant workers in singapore. in j. e. katz (ed.), mobile communication (175-190). routledge. vaismoradi, m., turunen, h. and bondas, t. (2013). content analysis and thematic analysis: implications for conducting a qualitative descriptive study. nursing & health sciences, 15(3), 398-405. doi: 10.1111/nhs.12048 vancea, m. and àlex, b. (2014). connected immigrants? four methodological challenges for the analysis of ict use through survey data. migraciones internacionales, 7(3), 43-72. doi.org/10.17428/rmi.v7i26.670 vancea, m. and olivera, n. (2013). e-migrant women in catalonia: mobile phone use and maintenance of family relationships. gender, technology and development, 17(2), 179203. doi.org/10.1177/0971852413488715 vang, z. m., sigouin, j., flenon, a. and gagnon, a. (2017). are immigrants healthier than native-born canadians? a systematic review of the healthy immigrant effect in canada. ethnicity & health, 22(3), 209-241. doi: 10.1080/13557858.2016.1246518. villa-torres, l., gonzalez-vazquez, t., fleming, p. j., gonzález-gonzález, e. l., infantexibille, c., chavez, r. and barrington, c. (2017). transnationalism and health: a systematic literature review on the use of transnationalism in the study of the health practices and behaviors of migrants. social science & medicine, 183, 70-79. doi: 10.1016/j.socscimed.2017.04.048 viruell-fuentes, e. a. and schulz, a. j. (2009). toward a dynamic conceptualization of social ties https://dx.doi.org/10.1007%2fs10433-017-0436-1 https://doi.org/10.1111/glob.12110 https://doi.org/10.3928/00989134-20170223-03 https://doi.org/10.1080/1369183x.2012.698202 https://doi.org/10.1111/glob.12054 https://doi.org/10.1016/j.socscimed.2016.03.014 https://doi.org/10.1177/1043659614543476 https://doi.org/10.1080/1070289x.1994.9962492 https://doi.org/10.1080/01494920903224392 https://doi.org/10.1080/01494920903224392 https://doi.org/10.17428/rmi.v7i26.670 https://doi.org/10.1177/0971852413488715 ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 issn 2563-9269 152 and context: implications for understanding immigrant and latino health. american journal of public health, 99(12), 2167-2175. doi: 10.2105/ajph.2008.158956 walker, k. e. (2018). terra firma and the digitally copresent migrant: exploring the significance of landscape for the newcomer (10934631). [doctoral dissertation, royal roads university]. proquest dissertations publishing. wilding, r. (2006). virtual intimacies? families communicating across transnational contexts. global networks, 6(2), 125-142 doi.org/10.1111/j.1471-0374.2006.00137.x withaeckx, s., schrooten, m. and geldof, d. (2015). living across borders: the everyday experiences of moroccan and brazilian transmigrants in belgium. crossings journal of migration & culture, 6(1), 23-40. doi:10.1386/cjmc.6.1.23_1 yiengprugsawan, v., welsh, j. and kendig, h. (2018). social capital dynamics and health in mid to later life: findings from australia. quality of life research, 27(5), 1277-1282. doi: 10.1007/s11136-017-1655-9 zhang, j. (2016). aging in cyberspace: internet use and quality of life of older chinese migrants. journal of chinese sociology, 3(26), 1-14. doi.org/10.1186/s40711-016-0045-y https://dx.doi.org/10.2105%2fajph.2008.158956 https://doi.org/10.1111/j.1471-0374.2006.00137.x http://dx.doi.org/10.1386/cjmc.6.1.23_1 https://doi.org/10.1007/s11136-017-1655-9 https://doi.org/10.1186/s40711-016-0045-y ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 issn 2563-9269 153 table 1: inclusion and exclusion criteria criteria inclusion exclusion language english other date of publication open ----- populations immigrants, refugees, foreign/temporary workers, undocumented migrants refugees in refugee camps, internally displaced peoples, & international students focus of study studies focused on ict use for transnational social activities and that reference some aspect of wellbeing left-behind communities, other types of transnational activities (political, economic), or no reference to wellbeing types of articles original research reviews and theoretical papers ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 issn 2563-9269 154 figure 1: prisma flow diagram figure 1. flow diagram adapted from moher, d., liberati, a., tetzlaff, j., altman, d. g. & the prisma group. (2009). preferred reporting items for systematic reviews and meta-analyses: the prisma statement. plos medicine, 6(7): e1000097. doi:10.1371/journal.pmed1000097 records identified through database searching (n = 685) sc re en in g el ig ib ili ty id en tif ic at io n additional records from other sources (n = 30) records after duplicates removed (n=487) abstracts/titles screened (n = 487) records excluded (n =313) full-text articles assessed for eligibility (n = 174) full-text articles excluded, with reasons (n = 137) no reference to wellbeing (n=79) not focused on transnational ict use for social connectivity (n=17) secondary review/ book chapter / conference paper (n=30) -focused on excluded populations (n=8) non-english article (n=3) studies included for the review (n = 37) in cl ud ed ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 issn 2563-9269 155 table 2: study characteristics authors, year country of migration country of emigration migrant category study methodology adugna, 2017 usa, israel ethiopia refugees, returnees & left-behind families n=19 cross-sectional survey of leftbehind families n=845 mixed methods (survey & interviews) aguila, 2009 taiwan uk saudi arabia philippines temporary foreign workers n= 6 qualitative (interviews) ahlin, 2017 oman india temporary foreign workers & left behind families n=29 qualitative (interviews & observation) baldassar, 2007 italy australia immigrants n=40 qualitative (interviews & observation) baldassar, 2014 australia italy, netherlands, ireland, singapore, new zealand, afghanistan, iraq, iran immigrants & refugees n=200 qualitative (interviews & observation) baldassar, 2016 australia ireland italy immigrants n=13 qualitative (interviews) berg, 2007 usa peru multi-generational transnational families n=8 qualitative (interviews & observation) bravo, 2017 united states latin america undocumented migrants n=12 qualitative (interviews) brown, 2016 israel philippine, nepal temporary foreign workers n=33 qualitative (interviews) chen, 2010 singapore china immigrants n=710 quantitative (survey) chib, 2013 singapore bangladesh, india, philippines, indonesia immigrants n=710 quantitative (survey) chib, 2014 singapore singapore, philippine temporary foreign workers n=40 mixed methods (survey, focus groups, interviews, & observations) díaz andrade, 2015 new zealand burma, bhutan colombia, democratic republic of congo, refugees n=53 qualitative (interviews) ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 issn 2563-9269 156 eritrea, ethiopia, iraq, rwanda farshbaf shaker, 2018 australia iran immigrants n=25 qualitative (interviews) francisco, 2015 usa philippine documented/undocumented temporary foreign workers n=50 left-behind family members n=25 qualitative (interviews, focus groups, participant observation) gonzalez, 2016 usa latin america immigrant & non-immigrant children n=166 immigrant & non-immigrant parents n=170 qualitative harney, 2013 italy nepal migrants n=3 qualitative (interviews & observation) heikkinen, 2013 finland ukraine, kazakhstan, russia older adult immigrants n=13 qualitative (interviews) khvorostianov, 2011 israel former soviet union older adult immigrants n=32 qualitative (interviews) king o'riain, 2015 ireland france, canada, usa, uk, malaysia, india, sri lanka, poland, zimbabwe, china transnational families n=26 qualitative (narrative interviews) lam, 2014 usa latin america, asia immigrant youths n=2 qualitative (case studies) lin, 2010 singapore not stated temporary foreign workers n=68 mixed methods (survey & interviews) madianou, 2012 uk philippines foreign workers (skilled & unskilled) and some children of workers n=105 qualitative (interviews) madianou, 2014 uk philippine migrants n=13 qualitative (interviews) madianou, 2016 uk phillipine migrants n=13 qualitative (interviews) nedelcu, 2017 switzerland and canada romania n=39 qualitative (interviews) nedelcu, 2016 switzerland romania n=39 qualitative (interviews) park, 2017 usa korea immigrants n=154 mixed method (photo-elicitation interviews & surveys) ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 issn 2563-9269 157 ryan, 2015 uk usa, france highly-skilled migrants n= 73 qualitative (interviews) shoko, 2015 south africa zimbabwean migrants n=30 qualitative (interviews) senyurekli, 2009 usa turkey immigrants n=30 qualitative (interviews) thomas, 2010 singapore india, philippine temporary foreign workers n=20 qualitative (ethnographic interviews) vancea, 2013 spain ecuador, morocco, romania migrants n=35 qualitative (interviews) walker, 2018 usa tanzania afghanistan iraq migrants n=5 qualitative (photo elicitation in-depth interviews) wilding, 2006 australia ireland, italy, netherlands, iran, singapore, new zealand immigrants & refugees n=200 qualitative (interviews & observation) withaeckx, 2015 belgium brazil and morocco migrants n=47 mixed-method (interviews & focus groups) zhang, 2016 new zealand china older adult migrants n=35 qualitative (interviews) ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 issn 2563-9269 158 table 3: study results authors, year ict-mediated activities reported influences on wellbeing adugna, 2017 caregiving access emotional support access information maintain social connections improved emotional and social wellbeing aguila, 2009 parenting maintain social connections inconsistent results: improved emotional and social wellbeing. in contrast, lack of non-verbal cues results in conflict and misunderstanding ahlin, 2017 caregiving / parenting improved emotional and social wellbeing baldassar, 2007 participate in life events access emotional support maintain social connections improved emotional and social wellbeing baldassar, 2014 caregiving maintain social connections inconsistent results: improved emotional, spiritual, and social wellbeing but can initiate negative emotion e.g. feelings of loss or absence baldassar, 2016 caregiving / parenting maintain social connections inconsistent results: improved emotional and social wellbeing but can increase conflict berg, 2007 caregiving/ parenting access emotional support maintain social connections inconsistent results: improved emotional and social wellbeing but can create anxiety bravo, 2017 caregiving access emotional support participate in life events maintain social connections improved physical, emotional and social wellbeing brown, 2016 parenting access emotional support access information inconsistent results: improved emotional and social wellbeing but can disrupt personal identity. chen, 2010 access emotional support access information inconsistent results: improved physical, emotional and social wellbeing but can hinder sociocultural adaptation to local context chib, 2013 access emotional support maintain social connections inconsistent results: improved emotional and social wellbeing in women but stress amplified in men chib, 2014 parenting access emotional support maintain social connections inconsistent results: improved emotional, spiritual, and social wellbeing but can result in negative emotions e.g. sadness díaz andrade, 2015 caregiving access emotional support maintain social connections improved emotional, spiritual, and social wellbeing ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 issn 2563-9269 159 farshbaf shaker, 2018 caregiving access emotional support maintain social connections improved emotional, spiritual, and social wellbeing francisco, 2015 parenting maintain social connections improved emotional and social wellbeing gonzalez, 2016 caregiving access emotional support maintain social connections inconsistent results: improved emotional and social wellbeing but can result in negative emotions e.g. feelings of loss or disconnectedness harney, 2013 parenting access emotional support maintain social connections improved emotional, spiritual, and social wellbeing heikkinen, 2013 participate in life events access emotional support maintain social connections improved emotional, and social wellbeing khvorostianov, 2011 access emotional support access information maintain social connections improved physical, emotional, spiritual, and social wellbeing king o'riain, 2015 parenting access emotional support assess information participate in life events maintain social connections improved emotional and social wellbeing lam, 2014 emotional support maintain social connections improved emotional and social wellbeing lin, 2010 caregiving/ parenting access emotional support access information maintain social connections improved emotional and social wellbeing madianou, 2012 parenting access emotional support inconsistent results: improved emotional, spiritual, and social wellbeing but can result in negative emotions e.g. stress, or disconnectedness madianou, 2014 caregiving access emotional support maintain social connections improved emotional and social wellbeing madianou, 2016 parenting maintain social connections inconsistent results: improved emotional and social wellbeing but can result in loss of privacy nedelcu, 2017 caregiving access emotional support maintain social connections inconsistent results: improved emotional and social wellbeing but can result in emotional distress nedelcu, 2016 caregiving access emotional support maintain social connections improved emotional, spiritual, and social wellbeing ihtp, 1(2), 139-160, 2021 cc by-nc-nd 4.0 issn 2563-9269 160 park, 2017 access emotional support maintain social connections improved emotional and social wellbeing ryan, 2015 parenting maintain social connections inconsistent results: improved emotional and social wellbeing but can results in decrease in wellbeing during stressful life events shoko, 2015 access emotional support maintain social connections improved emotional and social wellbeing senyurekli, 2009 access emotional support maintain social connections inconsistent results: improved emotional and social wellbeing but can initiate negative emotion e.g. distrust, frustration, and stress thomas, 2010 access emotional support maintain social connections inconsistent results: improved emotional, spiritual and social well-being but can increase stress vancea, 2013 caregiving access information maintain social connections inconsistent results: improved emotional and social wellbeing but can increase negative emotions walker, 2018 access emotional support maintain social connections inconsistent results: improved emotional and social wellbeing but can cause increase stress wilding, 2006 parenting participate in life events maintain social connections inconsistent results: improved emotional and social wellbeing but can result in negative emotions e.g. guilt and anxiety withaeckx, 2015 access emotional support maintain social connections inconsistent results: improved emotional and social wellbeing but can results in decrease in wellbeing during stressful life events zhang, 2016 caregiving access emotional support access information maintain social connections improved emotional, and social wellbeing identification screening eligibility issn 2563-9269 226 considerations for the design of a perinatal mindfulness intervention for adolescents based on a systematic review of the literature kymberly l. kvasnak1, ginny brunton1, manon lemonde1, barbara chyzzy2, jennifer abbass-dick1 1 faculty of health sciences, ontario tech university, oshawa, ontario, canada; 2 daphne cockwell school of nursing, ryerson university, toronto, ontario, canada corresponding author: b. chyzzy (barbara.chyzzy@ryerson.ca) abstract objectives: this systematic review of the literature was conducted to determine the best way to design mindfulness interventions for perinatal adolescent mothers to support mental health during the transition to parenthood and beyond. perinatal adolescents face unique challenges compared to adults due to their developmental stage and difficulties accessing social determinants of health. mindfulness educational interventions may be an ideal addition to perinatal supports to foster resilience and teach skills to reduce stress, anxiety, and depression. methods: a search strategy was developed to identify articles from 6 electronic databases including psycinfo, proquest, pubmed, cochrane library, ovid, and cinahl. qualitative analysis was done to identify mindfulness interventions which significantly decrease anxiety, depression, or stress and to determine the components and designs of these interventions. participants’ satisfaction with the interventions were analyzed, when available. best practices for designing interventions for adolescents were used to recommend adaptations to the mindfulness interventions to tailor them to the perinatal adolescent population. results: of the 561 studies retrieved from the search, 16 met the inclusion criteria. all included studies found at last one significant decrease in mental health outcomes (stress 9 of 13, anxiety 9 of 9; depression 9 of 14). the majority of the interventions began in the perinatal period, were delivered face-to-face, included homework, multiple sessions and by a trained professional. conclusion: mindfulness interventions are feasible, acceptable and effective in adult perinatal populations. components and design of these interventions could be adapted for perinatal adolescents to increase resilience to cope with unique parenthood challenges. keywords adolescent; childbirth education, mindfulness, perinatal, systematic review introduction perinatal adolescents are faced with a unique set of challenges during pregnancy, childbirth and parenting and are at an increased risk for mental health challenges (corcoran, 2016; kingston, heaman, fell, & chalmers, 2012; siegel & brandon, 2014). approximately 44,000 women ages 15-24 years gave birth in canada in 2019 (statistics canada, 2021) with 30% of mothers under the age of 25 reporting feelings of depression and anxiety in the first year postpartum (statistics canada, 2019). pregnancy and childbirth in ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 vulnerable populations such as adolescents can negatively impact the physiological development of both mother and child postpartum (anderson & mccarley, 2013; anderson & mcguiness, 2008; kingston et al., 2012; siegel & brandon, 2014; zaers, waschke, & ehlert, 2008). the children of mothers who struggle with mental health during pregnancy and postpartum can experience a diverse range of negative health outcomes, including developmental, behavioral, and cognitive difficulties, in addition to being at risk of developing mental health problems themselves (budden et al., 2016). research suggests issn 2563-9269 227 that perinatal adolescents experience poor mental health (anderson & mcguiness, 2008; siegel & brandon, 2014; zaers et al., 2008), post-traumatic stress disorder (ptsd) (anderson & mcguiness, 2008; anderson & mccarley, 2013; zaers et al., 2008), and maternal-fetal attachment issues (mercer, 1995; sauls, 2004; scott, klaus, & klaus, 1999). modifiable factors which are amenable to interventions should be explored to address these clinical issues. one such intervention is perinatal mindfulness education, as this has been designed and piloted in adult populations with preliminary evidence suggesting this intervention can support mental health (dhillon, sparks, & duarte, 2017; hall, beattie, lau, east, & biro, 2016; lever taylor, cavanagh, & strauss, 2016; matvienko-sikar, lee, murphy, & murphy, 2016; shi & macbeth, 2017). nevertheless, it is not known how to best deliver these interventions to the adolescent perinatal population, to meet their developmental learning needs. purpose the purpose of this systematic review is to determine mindfulness intervention designs that have been delivered to perinatal women and found to be effective in decreasing stress, anxiety and depression and make recommendations as to how these interventions can best be tailored for perinatal adolescents to assist them in building resilience and improve mental health outcomes (stress, anxiety, and depression). conceptual definition mindfulness mindfulness refers to an awareness of our thoughts, feelings, bodily sensations, and surrounding environment (kabat-zinn, 2003). this core operational definition is utilized in various mindfulness-based programs: mindfulness-based stress reduction (mbsr), mindfulness-based cognitive therapy (mbct) are the two most studied and employed mindfulness-based interventions (gu, strauss, bond, & cavanagh, 2015). mindfulness training in adolescents has been found to promote positive outcomes such as increased self-esteem, resilience and emotional regulation, and decreased stress, anxiety, and depression (broderick & frank, 2014; tan & martin, ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 2012; volanen et al., 2016; zack, saekow, kelly, & radke, 2014). in the adult perinatal population, mindfulness training has been identified as a skill which significantly decreased stress, depression and anxiety, and significantly increased mindfulness and positive affect, one’s ability to manage pain, empathy, self-compassion, relaxation, and body awareness (byrne, hauck, fisher, bayes, & schutze, 2013; goodman et al., 2014; woolhouse, mercuri, judd, & brown, 2014). mindfulness is a practice that is becoming increasingly more common for the reduction of stress and the promotion of health. mindfulness training has the capacity to yield beneficial effects on physical and mental health, and cognitive performance, while promoting personal growth and development by teaching one to nurture and protect the brain (tang, holzel, & posner, 2015). offering transferable skills to many areas of life, mindfulness can be of assistance when life stressors are encountered. mindfulness training during the perinatal period for adolescent mothers may be an ideal skill to build resilience to assist young mothers through labour and childbirth, in addition to building the skills and capacity to withstand the stresses experienced in parenthood and with obtaining the social determinants of health (sdoh). mindfulness in perinatal populations there is an emerging trend in using mindfulnessbased interventions with adult perinatal women to improve mental health. the results of five published systematic reviews suggest that mindfulness interventions delivered to perinatal adult women have been found to be effective in decreasing depression, anxiety, and stress and the qualitative data consistently suggests that participants view mindfulness interventions positively; perinatal women enjoy these interventions. (dhillon et al., 2017; hall et al., 2016; lever taylor et al., 2016; matvienko-sikar et al., 2016; shi & mcbeth, 2017). nevertheless, findings should be considered with caution as bias was present in all five reviews due to study design; future studies should use rigorous methods to examine intervention effects. mindfulness for adolescents designing a perinatal mindfulness intervention targeting adolescents requires an understanding of issn 2563-9269 228 the manner in which they prefer to receive information. three systematic reviews about mindfulness interventions with the adolescent were reviewed (cheang, gillions, & sparkes, 2019; kostova, levin, lorberg, & ziedonis, 2019; mckeering & hwang, 2019). mckeering and hwang (2019) examined mindfulness interventions delivered to the adolescent population in schools. eleven of the 13 studies in their review found positive improvements in mental health. kostova et al. (2019) reviewed mindfulness interventions, which included adolescents experiencing mental health conditions and found that interventions were feasible and well accepted, however clinical outcomes needed further investigation. lastly, cheang et al. (2019) explored the impact of mindfulness on empathy and compassion in adolescents and found some evidence to suggest that mindfulness increases self-compassion amongst this population. findings also indicate that mindfulness interventions are being designed and evaluated with diverse groups of adolescents. designing interventions for adolescents although there are emerging curricula for mindfulness interventions for children, at this time, no such protocol has been developed for adolescents (kostova et al., 2019). these reviews provide some considerations regarding the delivery of mindfulness interventions to adolescents. mckeering and hwang (2019) noted the importance of having a facilitator lead the mindfulness session, as some students found it boring and difficult to practice due to invasive and recurrent thoughts and their minds wandering. participants suggested that the mindfulness facilitator’s skill set and knowledge be based in both mindfulness and the target population (adolescents). the facilitator’s practice was more widely accepted when an explanation that a wandering mind and similar challenges are a normal part of mindfulness practice; this may help in preventing adolescents from thinking they are practicing mindfulness incorrectly, and in turn becoming disengaged (mckeering & hwang, 2019). this is important, as adolescent’s engagement is critical to learning (registered nurses’ association of ontario (rnao), 2010). kostova et al. (2019) suggestions include: (1) interventions should be adapted to the specific challenges of the teens, discuss situations that teens encounter in their daily life, making it more relatable and engaging, (2) it should be participatory and interactive, include role play, and experiential ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 learning through mindful exercises that bring awareness to the senses, (3) shortened sitting sessions that are increased gradually as tolerated, as some adolescents may have short attention spans, and the longer sittings common in adult populations can be challenging, (4), sessions no longer than 90 minutes to accommodate short attention spans, (5) discussing participant goals before the session, as this may improve engagement and motivation, and (6) parental training in addition to adolescent training may be effective. cheang et al. (2019) notes that it would be suitable to examine mindfulness-based interventions with adolescents, as they are often under-represented. doing so may assist in defining the time in development in which mindfulness interventions may be most helpful in meeting a child’s needs or cognitive ability (cheang et al., 2019). congruent with mckeering and hwang (2019), cheang et al. (2019) suggests that it may be feasible for mindfulness-based interventions to be conducted within schools, without the need to hire specialist staff, making this kind of intervention more accessible to school-aged children on a larger scale (cheang et al., 2019). methods a search strategy was developed to systematically identify published, peer reviewed articles from 6 electronic databases including psycinfo, proquest, pubmed, cochrane library, ovid, and cinahl. the initial search took place in december 2018; an updated search was conducted in july 2019. searches were conducted using keywords in various combinations (table 1). searches were organized and recorded to ensure no duplication of results occurred. no limits on the search dates were added. additional articles were selected manually from google scholar and reference lists of articles reviewed and included if they fit the inclusion criteria. consultation with a librarian and academic faculty with expertise in this area took place to ensure the search strategy was comprehensive. initial abstract screening was conducted to deem potentially relevant articles and the full text was then screened using the following criteria. for studies to be included in the review they had to meet the inclusion criteria: (1) published in english, (2) published in a peer-reviewed journal, (3) study sample included perinatal women, (4) the intervention focused on mindfulness training, (5) the published manuscript issn 2563-9269 229 provided data on at least one of the primary outcomes (stress, anxiety, and depression), and (6) research designs were randomized controlled trials or quasi-experimental. exclusion criteria consisted of: (1) a review of a dialectical behaviour therapy (dbt) or acceptance and commitment therapy (act) interventions, the use of mindfulness with other modalities such as biofeedback, alternative cognitive behavioural therapy, or yoga as a principal component, to reduce extraneous variable impact on outcomes of interest, (2) original data was not presented, and (3) articles solely of qualitative design. data extraction and analysis plan data extracted included components consistent with the standardized cochrane pregnancy and childbirth group data extraction (pcg) (cochrane editorial resource committee, n.d.) and include: (1) program, (2) format, (3) weeks/hours, (4) setting, (5) gestation, (6) number of contacts, (7) provider, and (8) country study was conducted. the analysis plan consisted of determining: (1) the statistically significant findings related to stress, anxiety and depression, (2) characteristics of effective intervention components and design, and (3) if effective characteristics align with suggested practices for adolescent mindfulness interventions. a narrative analysis was conducted to analyze estimates of mindfulness intervention effects; this included organizing study findings into a comprehensive textual narrative, with descriptions of differences in characteristics of the studies explored (campbell, katikireddi, sowden, mckenzie, & thomson, 2018). guidelines set out by the uk economic and social research council on the conduct of narrative synthesis were used (campbell et al., 2018). study details were collected to determine study population characteristics. for the perinatal adult population, the following study details were extracted (1) target sample, if the participants were healthy or diagnosed with mental health concerns, (2) sample size, (3) setting, (4) country study was conducted, and (5) the stage of the perinatal period. a comparison framework was used to identify if the research evidence surrounding perinatal mindfulness interventions correlated with suggested ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 practices for adolescent mindfulness education recommendations; this comparative method of synthesis has been used in evidence for policy and practice information and co-ordinating centre reviews (o’mara-eves et al., 2013). comparisons of the following intervention elements were included: (1) type (e.g., perinatal education and psychotherapy), (2) format (e.g., faceto-face instruction, individual or group, homework, online component [video, website, or application, etc.]), (3) length of intervention and number of sessions, (4) number of contacts (single or multiple), and (5) provider (e.g., healthcare professional, childbirth educator, lay, or peer). characteristics of interventions were collected in accordance with the elements indicated on the template for intervention description and replication (tidier) checklist (hoffmann et al., 2014). seven suggested practices for an adolescent mindfulness intervention were selected based on the recommendations from three systematic reviews (cheang et al., 2019; kostova et al., 2019; mckeering & hwang, 2019). these include facilitator capacity, delivery method, flexibility/adaptability, interactive and engaging curriculum, session length, reflection/discussion, and support training (parent/caregiver or partner of adolescent) design features which will be compared to effective perinatal mindfulness intervention components found in the included studies. effectiveness of mindfulness interventions in decreasing stress, anxiety, and depression were determined. for the studies found to be effective in improving these outcomes, the intervention components were analyzed and compared to recommendations for providing adolescent mindfulness education. to assess for differences in outcome risk of bias rating a sensitivity analysis was conducted, where studies were assessed visually (higgins & green, 2011). based on this analysis, recommendations were made for adaptation of a mindfulness intervention for perinatal adolescents. results the search retrieved 561 articles and after removing duplicates, 481 titles and abstracts were scanned and 94 were selected for full article review (figure 1). duplicates were removed (n = 80) and 387 titles and abstracts were excluded based on: (1) issn 2563-9269 230 incorrect target population (n = 125), (2) incorrect intervention (n = 173), and (3) incorrect methodology (n = 89). in addition, 78 full text articles did not meet eligibility criteria and were excluded due to: (1) mindfulness intervention did not fit criteria (n = 18), (2) target population was not specified (n = 24), (3) original data not presented (n = 12), (4) primary outcome data not reported (n = 18), and (5) no extractable data relevant to review (n = 6). sixteen mindfulness-based studies in 15 publications with perinatal women met our inclusion criteria and were included in our review (beattie, hall, biro, east, & lau, 2017; byrne et al., 2013; dunn, hanieh, roberts, & powrie, 2012; duncan & bardacke, 2010; duncan et al., 2017; goodman et al., 2014; guardino, dunkel schetter, bower, lu, & smalley, 2013; krusche, dymond, murphy, & crane, 2018; matvienko-sikar & dockray, 2017; muthukrishnan, jain, kohli, & batra, 2016; pan et al., 2019; townshend, caltabiano, powrie, & o’grady, 2018; vieten & astin, 2008;warriner, crane, dymond, & krusche, 2018; woolhouse et al., 2014). woolhouse et al. (2014) conducted a non-randomized trial and a randomized pilot-controlled trial as two separate studies within the same published article. out of the 16 studies, 15 were primarily conducted in high-income countries (world bank group, 2018), including five studies in the usa (duncan & bardacke, 2010; duncan et al., 2017; goodman et al., 2014; guardino et al., 2014; vieten & astin, 2008;), three in the united kingdom (krusche et al., 2018; matvienkosikar & dockray, 2017; warriner et al., 2018), five in australia (beattie et al., 2017; byrne et al., 2013; dunn et al., 2012; townshend et al., 2018; woolhouse et al., 2014), and one study in taiwan (pan et al., 2019). only one study was conducted in a middle to low-income country, india (muthukrishnan et al., 2016). assessment of bias biases in the included studies were identified. table 2 describes the quality of the perinatal adult studies, where nine of the 16 studies were assessed as having a low bias due to random sequence generation, allocation concealment, blinding of outcome assessment, blinding of participants and personnel, incomplete reporting of outcome data, and selective outcome reporting (cochrane editorial resource committee, n.d.); seven studies had unclear or high bias noted in these above areas of bias. ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 table 3 describes the quality of these seven studies which were assessed as having a high or unclear bias due to allocation sequence, allocation concealment, baseline outcome measures, and/or baseline characteristics, incomplete outcome data due to attrition, knowledge of allocated intervention, no protection against contamination, selective outcome reporting, and independence from intervention changes are also of concern based on data extraction and assessment template (deat; cochrane public health group, n.d.) form (byrne et al., 2013; duncan & bardacke, 2010; dunn et al., 2012; goodman et al., 2014; townshend et al., 2018; warriner et al., 2018; woolhouse et al., 2014 part 1). mindfulness intervention outcomes of the 16 studies included in this review which examined the perinatal adult population, 13 studies evaluated stress, nine studies explored anxiety and 14 studies reviewed depression. six studies looked at all three outcomes (byrne et al., 2013; townshend et al., 2018; vieten & astin, 2008; warriner et al., 2018; woolhouse et al., 2014). anxiety was evaluated in nine studies and all nine studies found statistically significant decreases (byrne et al., 2013; duncan & bardacke, 2010; goodman et al.,2014; guardino et al., 2014; townshend et al., 2018; vieten & astin, 2008; warriner et al., 2018; woolhouse et al., 2014). depression was evaluated in 14 studies and nine studies found a significant decrease in depression symptoms (duncan et al., 2017; duncan & bardacke, 2010; dunn et al., 2012; goodman et al., 2014; krusche et al., 2018; pan et al., 2019; townshend et al., 2018; warriner et al., 2018; woolhouse et al., 2014; table 4) types of treatment for insomnia and components of treatment study characteristics table 5 describes the perinatal mindfulness intervention characteristics (components and design) with the adult population in the 16 studies reviewed. the components of the mindfulness program/intervention and format components were explored, in addition to the design including: (1) the number of weeks/length of the intervention, (2) the number of hours/duration of the intervention, (3) the setting in which the intervention was conducted, (4) issn 2563-9269 231 the timing in which the intervention took place during gestation, (5) the number of contact points between the participant(s) and the intervention, and (6) the intervention provider/facilitator and their training. of the 16 studies, seven studies used a nonrandomised controlled trial design (byrne et al., 2013; dunn et al., 2012; duncan & bardacke, 2010; goodman et al., 2014; townshend et al., 2018; warriner et al., 2018;woolhouse et al., 2014 – part 1), while nine were randomized controlled trials (beattie et al., 2017; duncan et al., 2017; guardino et al., 2014; krusche et al., 2018; matvienko-sikar & dockray, 2017; muthukrishnan et al., 2016; pan et al., 2019; vieten & astin, 2008; woolhouse et al., 2014 – part 2). in four studies, participants in the control group received usual care (i.e. standard medical care by a primary care provider) (matvienko-sikar & dockray, 2017; muthukrishnan et al., 2016; pan et al., 2019; woolhouse et al., 2014 -part 2). three rct studies included usual care in addition to some form of generalized childbirth education (in a group, through readings, or discussion) (beattie et al., 2017; duncan et al., 2017; guardino et al., 2014). the remaining nine quasi-experimental studies conducted pre-post comparisons with participants (byrne et al., 2013; dunn et al., 2012; duncan & bardacke, 2010; goodman et al., 2014; krusche et al., 2018; townshend et al., 2018; vieten & astin, 2008; warriner et al., 2018; woolhouse et al., 2014 part 2). twelve studies had a sample size of 9 to 32 participants (beattie et al., 2017; byrne et al., 2013; dunn et al., 2012; duncan & bardacke, 2010; duncan et al., 2017; goodman et al., 2014; guardino et al., 2014; krusche et al., 2018; matvienko-sikar & dockray, 2017; vieten & astin, 2008; woolhouse et al., 2014 parts 1 and 2). four studies had a sample size ranging from 50 to 109 participants (muthukrishnan et al., 2016; pan et al., 2019; townshend et al., 2018; warriner et al., 2018). the 16 studies included in the review were heterogeneous in outcome time points and measures (table 4). the participants were recruited perinatally in all 16 studies. the target sample in all 16 studies were perinatal women, however two of the 16 studies did include partner participation (byrne et al., 2013; duncan & bardacke, 2010) and one study enrolled couples into the study together (warriner et al., 2018). three studies recruited during the first and second trimester (guardino et al., 2014; matvienkosikar & dockray, 2017; muthukrishnan et al., 2016), ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 seven studies recruited during the second and third trimester (beattie et al., 2017; byrne et al., 2013; dunn et al., 2012; duncan & bardacke, 2010; dunn et al., 2012; pan et al., 2019; warriner et al., 2018), and six studies recruited through all three trimesters (goodman et al., 2014; krusche et al., 2018; townshend et al., 2018; vieten & astin, 2008; woolhouse et al., 2014). fourteen studies were conducted in-class, face-toface (beattie et al., 2017; byrne et al., 2013; duncan & bardacke, 2010; duncan et al., 2017; dunn et al., 2012; goodman et al., 2014; guardino et al., 2014; muthukrishnan et al., 2016; pan et al., 2019; townshend et al., 2018; vieten & astin, 2008; warriner et al., 2018; woolhouse et al., 2014), while only two were delivered online (krusche et al., 2018; matvienko-sikar & dockray, 2017). childbirth education was incorporated into the mindfulness intervention in 11 out of 16 studies (beattie et al., 2017; byrne et al., 2013; duncan & bardacke, 2010; duncan et al., 2017; dunn et al., 2012; pan et al., 2019; townshend et al., 2018; vieten & astin, 2008; warriner et al., 2018; woolhouse et al., 2014) and five studies concentrated on mindfulness independent of childbirth education (goodman et al., 2014; guardino et al., 2014; krusche et al., 2018; matvienko-sikar et al., 2016; muthukrishnan et al., 2016). in 15 out of 16 studies, intervention material and practices consisted of homework and some form of mindfulness practice such as meditation, mindful movement and/or body scans (beattie et al., 2017; byrne et al., 2013; duncan & bardacke, 2010; duncan et al., 2017; dunn et al., 2012; goodman et al., 2014; guardino et al., 2014; krusche et al., 2018; muthukrishnan et al., 2016; pan et al., 2019; townshend et al., 2018; vieten & astin, 2008; warriner et al., 2018; woolhouse et al., 2014). ten of the 15 studies which included homework incorporated an audio recording aid for mindfulness practice (byrne et al., 2013; duncan & bardacke, 2010; duncan et al., 2017; dunn et al., 2012; goodman et al., 2014; guardino et al., 2014; pan et al., 2019; vieten & astin, 2008; woolhouse et al., 2014). there was significant variance in the mindfulness intervention format (components and design, intervention duration, target sample), the setting in which sessions were conducted, timing (gestation), number of contacts, and the provider (table 5). all included studies evaluated a mindfulness intervention. two of the 16 studies were general issn 2563-9269 232 mindfulness-based interventions; not designed specifically for women in the perinatal period (guardino et al., 2014; krusche et al., 2018). three studies were based on mbct (dunn et al., 2012; goodman et al., 2014; townshend et al., 2018). four studies were based on mbcp (duncan et al., 2017; duncan & bardacke, 2010; pan et al., 2019; warriner et al., 2018). two studies were based on mbsr (byrne et al., 2013; muthukrishnan et al., 2016). the majority of intervention formats, in 14 of 16 studies, included face-to-face mindfulness sessions which were provided in a group environment (beattie et al., 2017; byrne et al., 2013; duncan & bardacke, 2010; duncan et al., 2017; dunn et al., 2012; goodman et al., 2014; guardino et al., 2014; muthukrishnan et al., 2016; pan et al., 2019; townshend et al., 2018; vieten & astin, 2008; warriner et al., 2018; woolhouse et al., 2014). two studies were delivered via an online platform to be completed individually (krusche et al., 2018; matvienko-sikar & dockray, 2017). all 16 interventions were delivered across the perinatal period and consisted of multiple contacts. the intervention settings included hospital settings (pan et al., 2019; townshend et al., 2018; vieten & astin, 2008; woolhouse et al., 2014), university and/or academic settings (duncan et al., 2017; guardino et al., 2014; goodman et al., 2014), an online platform accessed at home (krusche et al., 2018; matvienko-sikar & dockray, 2017), and community settings: a tertiary health care and maternity services provider (beattie et al., 2017), a clinic and off-site location (duncan & bardacke, 2010), children’s centers for expectant parents (warriner et al., 2018), and in three studies the intervention settings were not reported (byrne et al., 2013, dunn et al., 2012; muthukrishnan et al., 2016). in the majority of studies, the intervention was provided by a health care professional including midwives, mental health clinicians, psychologists, psychiatrists, or educators; in nine of the 16 studies, the provider was trained in mindfulness (beattie et al., 2017; byrne et al., 2013; duncan & bardacke, 2010; duncan et al., 2017; goodman et al., 2014; guardino et al., 2014; pan et al., 2019; vieten & astin, 2008; warriner et al., 2018; woolhouse et al., 2014). six of the 16 studies explored participant experiences (byrne et al., 2013; duncan & bardacke, 2010; dunn et al., 2012; goodman et al., 2014; woolhouse et al., 2014). byrne and colleagues (2013) determined participants felt a sense of community, ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 were more active participants and decision makers during pregnancy and birth, and found the program very engaging (byrne et al., 2013). participants of the mbcp intervention identified that mbcp was used to: (1) cope with stress, (2) stay in the present, (3) be aware of emotional reactivity, and (4) cope with the unexpected, during labour, delivery, and postpartum (duncan & bardacke, 2010). dunn and colleagues (2012) established themes at the six-week interviews: participants expressed that they: (1) stopped to think, (2) reflected, (3) embraced present (4) practiced acceptance, and (5) enjoyed sharing experiences (dunn et al., 2012). the calm pregnancy intervention study by goodman et al., (2014) found that participants had learned: (1) specific skills to help anxiety, (2) connected and learned from others, (3) they were not alone, (4) acceptance and selfkindness, (5) to be less reactive, (6) to think differently, and (7) to develop insight into coping with anxiety. woolhouse and colleagues (2014) conducted both a non-randomized trial and a pilot randomised control trial with a qualitative component; both found four main themes among participants. participants stated that the mindbabybody intervention: (1) helped to control destructive patterns: cognitive, emotional and behavioural, (2) improved interpersonal relationships, (3) quality of life, and (4) sleep. qualitative reports from participants expand upon and support the quantitative findings which indicate the potential of mindfulness practices to improve women’s mental health during the perinatal period. effective perinatal mindfulness components found in the 16 studies reviewed align with suggested practices for adolescent education program development; these components are presented in table 6. discussion positive trends in our review of 16 studies are encouraging and provide preliminary evidence of the effectiveness of mindfulness interventions. however, the current body of literature and empirical evidence surrounding mindfulness interventions does not provide conclusive evidence about the effectiveness of mindfulness interventions due to biases present in methodological designs and small sample sizes. thus, further research is warranted to determine the effectiveness of mindfulness interventions delivered issn 2563-9269 233 to perinatal adolescents to promote mental health, reducing stress, anxiety and depression. it is noteworthy that resilience was only examined in one of the 16 studies (duncan & bardacke, 2010). conversely, resilience was a primary outcome measured in several studies which concentrated on mindfulness in adolescents (broderick & frank, 2014; tan & martin, 2012; volanen et al., 2016; zack et al., 2014). it would be of interest to measure resilience as an outcome in an adolescent perinatal intervention context, as the literature suggests that adolescent mothers endure hardship. young women who become adolescent mothers are met with increased challenges in relation to the sdoh, when compared to mothers who delay childbearing (hoffman & maynard, 2008; raphael, 2014; viner et al., 2012) and the sdoh in the children of adolescent mothers also suffer when compared to children of women who delay-childbearing (hoffman & maynard, 2008; planned parenthood, 2014). mindfulness training in adolescents promotes positive outcomes like resilience that can help break this cycle (broderick & frank, 2014; tan & martin, 2016; volanen et al., 2016; zack et al., 2014) and in such, extending mindfulness training is positively associated with adolescent mindfulness, self-esteem and resiliency (broderick & frank, 2014; tan & martin, 2016; volanen et al., 2016; zack et al., 2014). building these skill sets perinatally through mindfulness training may increase the ability to cope with the sdoh challenges mother and child will face in the future. recent literature demonstrates that resilience may help these young women and their children access the sdoh in their future (hoffman & maynard, 2008; planned parenthood, 2014; raphael, 2014; tan & martin, 2012; viner et al., 2012). it is evident that adolescent learning preferences and developmental needs vary from adults (anderson & mcguiness, 2008; klein, 2005; low et al., 2003; mercer, 1995; sauls, 2004, 2010). the findings of effective mindfulness intervention components and design in this review were consistent with those found by dhillon et al. (2017), hall et al. (2016), matvienko-sikar et al. (2016), shi & macbeth (2017) and lever taylor et al. (2016) in the perinatal population and with cheang et al. (2019), kostova et al. (2019) and mckeering and hwang (2019) who conducted systematic reviews of mindfulness interventions with the adolescent population. ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 recommendations for designing mindfulness intervention to perinatal adolescents while there had been development in designing mindfulness interventions for children and adults, currently, there is no known protocol for designing mindfulness interventions for perinatal adolescents (kostova et al., 2019). in alignment with suggested practices for adolescent education, the components and design of these interventions may have the capacity to be integrated into existing mindfulness programs and adapted to benefit perinatal adolescents. based in foundational literature regarding the appropriateness of web-based applications for adolescents, it is recommended that current childbirth education providers be aware of freely available web-based resources for adolescent mothers, such as mind the bump, smiling minds or the mindfulness for pregnancy app, as pre-existing mindfulness training programs that can be integrated into their established perinatal education. in regard to in-class mindfulness interventions, it is recommended that the facilitator have a knowledge of the adolescent developmental stage, that the session have a duration of 90 minutes or less, be interactive and engaging with a focus on reflection, and make support training for the parents/caregivers and/or partner of perinatal adolescents available when required. future research should also include how to tailor interventions to reduce attrition among vulnerable adolescents, as this population’s reduced access to sdoh tends to negatively effect study retention (pyatak et al., 2013). in addition, the perinatal population is also disposed to high attrition (beattie et al., 2017; duncan et al., 2017; dunn et al., 2012; guardino et al., 2014; townshend et al., 2018; woolhouse et al., 2014) often due to barriers such as, demographic factors, insufficient time to participate/complete the study, and/or the unpredictability of childbirth and/or medical complications (coleman-phox et al., 2013; frew et al., 2014). limitations of this review the findings of this systematic review illustrate significant methodological issues with the 16 studies explored. limitations of our findings were due to concerns with methodological quality of the included studies based on: (1) small, convenience samples; (2) high bias, a lack of active-controls, self-reported measures, self-selection, and high attrition; and (3) ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 issn 2563-9269 234 heterogeneity in measurements, programs, format, settings, and providers of included studies making it difficult to draw definitive conclusions. in addition, this study was conducted by a single reviewer as part of a master’s project. while screening, coding, and analysis by two reviewers is recommended, the reviewer (kk) was closely supervised by a more experienced co-investigator (jad) who sought consultation with a review methodologist (gb). these strategies helped to mitigate the risk that some studies were missed (waffenschmidit et al., 2019). in addition, adolescent mindfulness interventions were not incorporated specifically into the search strategy; however, these studies would have been located through the broader search terms used. finally, it should be considered that only perinatal mindfulness intervention components found to be effective were included, nevertheless, for the purposes of finding the components of effective interventions this strategy was appropriate. conclusion in conclusion, this review demonstrates that mindfulness interventions are a non-invasive, nonpharmacological approach found to show positive trends towards promoting perinatal mental health among adults, which can be adapted for perinatal adolescents. mindfulness interventions are preventative practices that can be pursued independently, are cost-effective, and offer transferable benefits (cullen, 2011). references anderson, c., & mccarley, m. (2013). psychological birth trauma in adolescents experiencing an early birth. mcn, the american journal of maternal/child nursing, 38(3), 170-176. https://doi.org/10.1097/nmc.0b013e31826 f6cad anderson, c., & mcguinness, t. (2008). do teenage mothers experience childbirth as traumatic? journal of psychosocial nursing and mental health services, 46(4), 21-24. https://doi.org/10.3928/0279369520080401-01 beattie, j., hall, h., biro, m., east, c., & lau, r. (2017). effects of mindfulness on maternal stress, depressive symptoms and awareness of present moment experience: a pilot randomised trial. midwifery, 50, 174-183. https://doi.org/10.1016/j.midw.2017.04.00 6 broderick, p., & frank, j. (2014). learning to breathe: an intervention to foster mindfulness in adolescence. new directions for youth development, 142, 31-44. https://doi.org/10.1002/yd.20095 budden, a., chappelle, j., comiré, s., foroutani, s., jones, k., misek, d. et al. (2016). my life, my voice: the experience of young parents in durham region [ebook] (1-98). oshawa: young parent community coalition of durham. http://durham.ca/mylifemyvoice byrne, j., hauck, y., fisher, c., bayes, s., & schutze, r. (2013). effectiveness of a mindfulness-based childbirth education pilot study on maternal self-efficacy and fear of childbirth. journal of midwifery and women’s health, 59(2), 192197. https://doi.org/10.1111/jmwh.12075 campbell, m., katikireddi, s., sowden, a., mckenzie, j., & thomson, h. (2018). improving conduct and reporting of narrative synthesis of quantitative data (icons-quant): protocol for a mixed methods study to develop a reporting guideline, bmj open, 8(2), 020064. https://doi.org/10.1136/bmjopen-2017020064 cheang, r., gillions, a., & sparkes, e. (2019). do mindfulness-based interventions increase empathy and compassion in children and adolescents: a systematic review. journal of child and family studies, 28(7), 1765-1779. https://doi.org/10.1007/s10826-019-014139 cochrane editorial resource committee (n.d). cochrane pregnancy and childbirth group data extraction form. retrieved from https://pregnancy.cochrane.org cochrane public health group (n.d.) data extraction and assessment template. retrieved from: https://ph.cochrane.org/sites/ph.cochrane. org/files/public/uploads/cphg%20data%20 extraction%20template_0.docx coleman-phox, k., laraia, b., adler, n., vieten, c., thomas, m., & epel, e., (2013). recruitment and retention of pregnant women for a behavioral intervention: lessons from the maternal adiposity, metabolism, and stress (mamas) study. preventing chronic disease, 10, 1-7. https://doi.org/10.5888/pcd10.120096 ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 issn 2563-9269 235 corcoran, j. (2016). teenage pregnancy and mental health. societies, 6(3), 1-9. https://doi.org/10.3390/soc6030021 cullen, m. (2011). mindfulness-based interventions: an emerging phenomenon. mindfulness, 2(3), 186-193. https://doi.org/10.1007/s12671-011-0058-1 dhillon, a., sparkes, e., & duarte, r. (2017). mindfulness-based interventions during pregnancy: a systematic review and metaanalysis. mindfulness, 8(6), 1421-1437. https://doi.org/10.1007/s12671-017-0726-x duncan, l., cohn, m., chao, m., cook, j., riccobono, j., & bardacke, n. (2017). benefits of preparing for childbirth with mindfulness training: a randomized controlled trial with active comparison. bmc pregnancy and childbirth, 17(140), 1-11. https://doi.org/10.1186/s12884-017-1319-3 duncan, l., & bardacke, n. (2010). mindfulness-based childbirth and parenting education: promoting family mindfulness during the perinatal period. journal of child and family studies, 19(2), 190-202. https://doi.org/10.1007/s10826-009-9313-7 dunn, c., hanieh, e., roberts, r., & powrie, r. (2012). mindful pregnancy and childbirth: effects of a mindfulness-based intervention on women’s psychological distress and wellbeing during the perinatal period. archives of women’s mental health.15, 139143. https://doi.org/10.1007/s00737-0120264-4 frew, p., saint-victor, d., isaacs, m., kim, s., swamy, g., sheffield, j., edwards, k., villafana, t., kamagate, o., & ault, k. (2014). recruitment and retention of pregnant women into clinical research trials: an overview of challenges, facilitators, and best practices. clinical infectious diseases, 59(7), 400-407. https://doi.org/10.1093/cid/ciu726 goodman, j., guarino, a., chenausky, k., klein, l., prgaer, j., petersen, r., forget, a., & freeman, m. (2014). calm pregnancy: results of a pilot study of mindfulness-based cognitive therapy for perinatal anxiety. archive of women’s mental health. 17, 373387. https://doi.org/10.1007/s00737-0130402-7 gu, j., strauss, c., bond, r., & cavanagh, k. (2015). how do mindfulness-based cognitive therapy and mindfulness-based stress reduction improve mental health and wellbeing? a systematic review and metaanalysis of mediation studies. clinical psychology review, 37, 1-12. https://doi.org/10.1016/j.cpr.2015.01.006 guardino, c., dunkel schetter, c., bower, j., lu, m., & smalley, s. (2013). randomised controlled pilot trial of mindfulness training for stress reduction during pregnancy. psychology & health, 29(3), 334-349. https://doi.org/10.1080/08870446.2013.85 2670 hall, h., beattie, j., lau, r., east, c., & biro, m. (2016). the effectiveness of mindfulness training on perinatal mental health: a systematic review. women and birth, 29(1), 62-71. https://doi.org/10.1016/j.imr.2015.04.233 higgins, j.p., & green, s. (2011). cochrane handbook for systematic reviews of interventions: wiley online library. hoffman, d., & maynard, r. (2008). kids having kids: economic costs and social consequences of teen pregnancy, 2nd edition. washington, dc: the urban institute press. hoffmann, t., glasziou, p., boutron, i., milne, r., perera, r., moher, d., altman, d., barbour, v., macdonald, h., johnston, m., lamb, s., dixon-woods, m., mcculloch, p., wyatt, j., chan, a., & michie, s. (2014). better reporting of interventions: template for intervention description and replication (tidier) checklist and guide. british medical journal, 348, 1687-1687. https://doi.org/10.1136/bmj.g1687 kabat-zinn, j. (2003). mindfulness-based interventions in context: past, present, and future. clinical psychology: science and practice, 10(2), 144-156. https://doi.org/10.1093/clipsy.bpg016 kingston, d., heaman, m., fell, d., & chalmers, b. (2012). comparison of adolescent, young adult, and adult women's maternity experiences and practices. paediatrics, 129(5), 1228-1237. https://doi.org/10.1542/peds.2011-1447 kostova, z., levin, l., lorberg, b., & ziedonis, d. (2019). mindfulness-based interventions for adolescent's with mental health conditions: a systematic review of the research literature. journal of child and family studies, 28, 2633–2649. ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 issn 2563-9269 236 https://doi.org/10.1007/s10826-019-014777 krusche, a., dymond, m., murphy, s., & crane, c. (2018). mindfulness for pregnancy: a randomised controlled study of online mindfulness during pregnancy. midwifery, 65, 51-57. https://doi.org/10.1016/j.midw.2018.07.00 5 lever taylor, b., cavanagh, k., & strauss, c. (2016). the effectiveness of mindfulness-based interventions in the perinatal period: a systematic review and meta-analysis. plos one, 11(5), 0155720. https://doi.org/10.1371/journal.pone.0155 720 logsdon, m., barone, m., lynch, t., robertson, a., myers, j., morrison, d. et al. (2013). testing of a prototype web based intervention for adolescent mothers on postpartum depression. applied nursing research, 26(3), 143-145. https://doi.org/10.1016/j.apnr.2013.01.005 matvienko-sikar, k., & dockray, s. (2017). effects of a novel positive psychological intervention on prenatal stress and well-being: a pilot randomised controlled trial. women and birth, 30(2), 111-118. https://doi.org/10.1016/j.wombi.2016.10.0 03 matvienko-sikar, k., lee, l., murphy, g., & murphy, l. (2016). the effects of mindfulness interventions on prenatal well-being: a systematic review. psychology & health, 31(12), 415-434. https://doi.org/10.1080/08870446.2016.12 20557 mckeering, p., & hwang, y. (2019). a systematic review of mindfulness-based school interventions with early adolescents. mindfulness, 10(4), 593-610. https://doi.org/10.1007/s12671-018-0998-9 mercer, r. t. (1995). becoming a mother. new york: springer. muthukrishnan, s., jain, r., kohli, s., & batra, s. (2016). effect of mindfulness meditation on perceived stress scores and autonomic function tests of pregnant indian women. journal of clinical and diagnostic research, 10(4), 58. https://doi.org/10.7860/jcdr/2016/16463. 7679 o’mara-eves, a., brunton, g., mcdaid, d., oliver, s., kavanagh, j., jamal, f., matosevic, t., harden, a., & thomas, j. (2013). community engagement to reduce inequalities in health: a systematic review, meta-analysis and economic analysis. public health research, 1(4), 1-526. https://doi.org/10.3310/phr01040 pan, w., gau, m., lee, t., jou, h., liu, c., & wen, t. (2019). mindfulness-based programme on the psychological health of pregnant women. women and birth, 32(1), 102-109. https://doi.org/10.1016/j.wombi.2018.04.0 18 pyatak, e., blanche, e., garber, s., diaz, j., blanchard, j., florindez, l., & clark, f. (2013). conducting intervention research among underserved populations: lessons learned and recommendations for researchers. archives of physical medicine and rehabilitation, 94(6), 1190-1198. https://doi.org/10.1016/j.apmr.2012.12.00 9 raphael, d. (2014). social determinants of children’s health in canada: analysis and implications. international journal of child, youth and family studies, 5(2), 220-239. https://doi.org/10.18357/ijcyfs.raphaeld.52 2014 registered nurses’ association of ontario (rnao) (2010). clinical best practice guidelines: enhancing healthy adolescent development. toronto. retrieved 07/29/19 from https://rnao.ca/sites/rnaoca/files/enhancing_healthy_adolescent_de velopment.pdf sauls, d. (2004). adolescents' perception of support during labour. the journal of perinatal education, 13(4), 36-42. https://doi.org/10.1624/105812404x6216 scott, k., klaus p., & klaus, m. (1999). the obstetrical and postpartum benefits of continuous support during childbirth. journal of women's health and gender-based medicine, 8(10), 1257-1264. https://doi.org/10.1089/jwh.1.1999.8.1257 shi, z., & macbeth, a. (2017). the effectiveness of mindfulness-based interventions on maternal perinatal mental health outcomes: a systematic review. mindfulness, 8(4), 823847. https://doi.org/10.1007/s12671-0160673-y issn 2563-9269 237 siegel, r. s., & brandon, a. r. (2014). adolescents, pregnancy, and mental health. journal of paediatric and adolescent gynaecology, 27(3), 138150. https://doi.org/10.1016/j.jpag.2013.09.008 statistics canada (2017). life in the fast lane: how are canadian’s managing? retrieved from https://www150.statcan.gc.ca/n1/dailyquotidien/171114/dq171114aeng.htm?hpa=1 statistics canada. (2019). maternal mental health in canada 2018-2019. retrieved from: https://www150.statcan.gc.ca/n1/dailyquotidien/190624/dq190624b-eng.htm statistics canada. (2021). live births by age of mother. retrieved from: https://www150.statcan.gc.ca/t1/tbl1/en/t v.action?pid=1310041601 stinson, j., wilson, r., gill, n., yamada, j., & holt, j. (2009). a systematic review of internet based self-management interventions for youth with health conditions. journal of pediatric psychology, 34(5), 495-510. https://doi.org/10.1093/jpepsy/jsn115 tan, l., & martin, g. (2012). mind full or mindful: a report on mindfulness and psychological health in healthy adolescents. international journal of adolescence and youth, 21(1), 6474. https://doi.org/10.1080/02673843.2012.70 9174 tang, y., holzel, b., & posner, m. (2015). the neuroscience of mindfulness meditation. nature reviews neuroscience, 16, 213-225. https://doi.org/10.1007/978-3-319-46322-3 townshend, k., caltabiano, n., powrie, r., & o’grady, h. (2018). a preliminary study investigating the effectiveness of the caring for body and mind in pregnancy (cbmp) in reducing perinatal depression, anxiety and stress. journal of child and family studies, 27(5), 1556-1566. https://doi.org/10.1007/s10826-017-0978-z vieten, c., & astin, j. (2008). effects of a mindfulnessbased intervention during pregnancy on prenatal stress and mood: results of a pilot study. archives of women's mental health, 11, 67-74. https://doi.org/10.1007/s00737008-0214-3 viner, r., ozer, e., denny, s., marmot, m., resnick, m., fatusi, a., & currie, c. (2012). adolescence and the social determinants of health. ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 adolescent health 2, 379, 1641-1652. https://doi.org/10.1016/s01406736(12)60149-4 volanen, s., lassander, m., hankonen, n., santalahti, p., hintsanen, m., simonsen, n., raevouri, a., mullola, s., vahlberg, t., but, a., & suminen, s. (2016). health learning mind – a school-based mindfulness and relaxation program: a study protocol for a cluster randomized controlled trial. bmc psychology, 4(35), 1-10. https://doi.org/10.1186/s40359-016-0142-3 waffenschmidt, s., knelangen, m., sieben, w., bühn, s., & pieper, d. (2019). single screening versus conventional double screening for study selection in systematic reviews: a methodological systematic review. bmc medical research methodology, 19(1), 1-9. https://doi.org/10.1186/s12874-019-0782-0 warriner, s., crane, c., dymond, m., & krusche, a. (2018). an evaluation of mindfulnessbased childbirth and parenting courses for pregnant women and prospective fathers/partners within the uk nhs (mbcp4-nhs). midwifery, 64, 1-10. https://doi.org/10.1016/j.midw.2018.05.00 4 woolhouse, h., mercuri, k., judd, f., & brown, s. (2014). antenatal mindfulness intervention to reduce depression, anxiety and stress: a pilot randomized controlled trial of the mindbabybody program in an australian tertiary maternity hospital. bmc pregnancy and childbirth, 14(369), 1-16. https://doi.org/10.1186/s12884-014-0369-z world bank group. (2018). world bank country and lending groups. retrieved from https://datahelpdesk.worldbank.org/knowl edgebase/articles/906519 zaers, s., waschke, m., & ehlert, u. (2008). depressive symptoms and symptoms of post-traumatic stress disorder in women after childbirth. journal of psychosomatic obstetrics and gynecology, 29(1), 61-71. https://doi.org/10.1080/016748207018043 24 zack, s., saekow, j., kelly, m., & radke, a. (2014). mindfulness-based interventions for youth. journal of rational-emotive and cognitivebehaviour therapy, 32(1), 44-56. https://doi.org/10.1007/s10942-014-01792. ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 issn 2563-9269 238 table 1. search terms for perinatal mindfulness for women 1. mindful*.ab,ti,kf. 2. (mindfulness-based or mindfulness based).ab,ti,kf. 3. or/1-2 4. women .ab,ti,kf. 5. mother*.ab,ti,kf. 6. (mom or moms or mommy).ab,ti,kf. 7. maternal. ab,ti,kf. 8. adolescent*.ab,ti,kf. 9. or/4-8 10. perinatal*.ab,ti,kf. 11. prenatal*.ab,ti,kf. 12. pregnan*.ab,ti,kf. 13. antenatal*.ab,ti,kf. 14. (postpartum or post-partum).ab,ti,kf. 15. (childbirth or child birth).ab,ti,kf. 16. or/10-15 17. (mental adj3(health or wellness or disorder or illness).ab,ti,kf. 18. (mood adj2 disorder).ab,ti,kf. 19. (stress* or anxiety or depressi* or resilen* or fear or pain).ab,ti,kf. 20. or/17-19 21. (educat* or program* or practice* or intervention* or train* or support* or trial* or control* or experiment*).ab,ti,kf. 22. 20 and 21 23. 16 and 22 24. 9 and 23 25. 3 and 24 ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 issn 2563-9269 239 figure 1. prisma 2009 study identification and select records identified through database search (n= 561) full-text articles assessed for eligibility (n = 94) studies included in qualitative synthesis (n = 16) * in 15 publications titles and abstracts screened (n = 481) (n = 78) excluded on basis of full text: n= 18 mindfulness intervention did not fit criteria n= 24 target population was not specified n= 12 original data not presented n= 18 primary outcome data not reported n= 6 no extractable data relevant to review duplicates removed (n= 80) (n = 387) excluded on basis of title/abstract: n= 125 incorrect target population n= 173 incorrect intervention n= 89 incorrect methodology ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 issn 2563-9269 240 table 2. assessment of risk of bias for perinatal adult (pcg form) author, year design random sequence generation allocation concealment blinding of outcome assessment blinding of participants and personnel incomplete outcome data selective outcome reporting beattie et al. (2017) *rct low low low low unclear low duncan et al. (2017) *rct low low low low low low guardino et al. (2014) *rct low unclear unclear unclear low low krusche et al. (2018) *rct low low unclear low low low matvienko-sikar & dockray (2017) *rct low low unclear low low low muthukrishnan et al. (2016) *rct unclear unclear low low low low pan et al. (2019) *rct low low unclear low low low vieten & astin (2008) *rct low unclear unclear unclear low low woolhouse et al. (2014 part 2) *rct low low unclear unclear low low *rct = randomized controlled trial ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 issn 2563-9269 241 table 3. assessment of risk of bias for perinatal adult population (deat form) *qe = quasi-experimental author, year design allocation sequence allocation concealment baseline outcome measures baseline characteristics incomplete outcome data addressed knowledge of allocated intervention protection against contamination selective outcome reporting independence from intervention changes byrne et al. (2013) *qe no no yes no no no no yes no duncan & bardacke (2010) *qe no no no no no no no yes no dunn et al. (2012) *qe no no yes yes no no no yes no goodman et al. (2014) *qe no no yes yes no no no yes no townshend et al. (2018) *qe no no yes yes no no no yes no warriner et al. (2018) *qe no no yes no no no no yes no woolhouse et al. (2014 part 1) *qe no no yes yes no no no yes no ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 issn 2563-9269 242 table 4. perinatal mindfulness intervention outcomes with adult population author, year, design sample size @ baseline retention @ completion time point outcomes stress anxiety depression beattie et al. (2017), rct ig = 24 cg = 24 ig = 9 cg = 11 baseline post-intervention (6 weeks) pss-10 (p = 0.822) n/a epds (p = 0.722) byrne et al. (2013), pilot n = 18 n =12 baseline postpartum (3-12 weeks) dass-21 (p = <0.036) dass-21 (p = <0.001) dass-21 (p = <0.104) epds (p = 0.423) duncan et al. (2017), rct ig = 15 cg = 14 ig = 15 cg = 14 baseline postpartum (within 6 weeks) n/a n/a ces-d (p = 0.04) duncan & bardacke (2010), pilot n = 27 n = 27 baseline post-intervention (late 3rd trimester) n/a pas (p = <0.0001) ces-d (p = 0.016) dunn et al. (2012), pilot ig = 14 cg = 9 ig = 10 cg = 9 baseline postpartum (6 weeks) dass-21 (75% of participants experienced clinically reliable decrease in stress) n/a epds (50% of participants experienced positive change in depression) goodman et al. (2014), pilot n = 24 n = 23 baseline post-intervention (8 weeks) n/a bai (p = 0.020) bdi-11 (p = 0.01) guardino et al. (2014), rct ig = 24 cg = 23 ig = 20 cg = 13 baseline post-intervention (6 weeks) pss (p = <0.05) psa (p = <0.05) stai (p = 0.001) pra (p = 0.001) n/a krusche et al. (2018), rct ig = 107 cg = 78 ig = 16 cg = 32 baseline postpartum (2 months) pss (p =< .005) n/a epds (p = < 0.005) ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 issn 2563-9269 243 matvienko-sikar & dockray (2017), rct ig = 32 cg = 14 ig = 24 cg = 12 baseline post-intervention (3 weeks) pdq (p = 0.04) n/a epds (p = 0.97) muthukrishnan et al. (2016), rct ig = 37 cg = 37 ig = 37 cg = 37 baseline post-intervention (5 weeks) pss (p = < 0.001) n/a n/a pan et al. (2019), rct iv = 52 cg = 52 ig = 51 cg = 45 baseline postpartum (36 weeks gestation) pss (p = <0.01) n/a epds (p = 0.007) townshend et al. (2018), pilot n = 109 n = 109 baseline post-intervention (8 weeks) dass-21 (p = < 0.01) dass-21 (p = 0.05) pass (p = < 0.01) dass-21 (p = < 0.01) epds (p = < 0.01) vieten & astin (2008), rct ig = 13 cg = 18 ig = 13 cg = 18 baseline post-intervention (10 weeks) pss (p = 0.35) stai (p = <0.04) ces-d ((p = 0.06) warriner et al. (2018), pilot mothers n = 64 partners n = 36 mothers n = 36 partners n = 19 baseline post-intervention (4 weeks) mothers pss (p = <0.001) partners pps (p = 0.057) mothers gad-7 (p = < 0.001) partners gad-7 (p = 0.016) mothers epds (p = <0.0001) partners epds (p = 0.028) woolhouse et al. (2014), pilot – part 1: non-rct n = 20 n = 11 baseline post-intervention (8 weeks) dass (p = 0.07) pss (p = 0.09) stai (p = 0.04) dass (p = 0.20) ces-d (p = 0.04) dass (p = 0.01) woolhouse et al. (2014), part 2 : pilot rct ig = 17 cg = 15 ig= 13 cg =10 baseline post-baseline (8 weeks) dass (p = 0.33) pss (p = 0.60) stai (p = 0.52) dass (p = 0.02) ces-d (p = 0.47) dass (p = 0.15) ig = intervention group; cg = control group; epds = edinburgh post natal depression scale; pss = perceived stress scale; ces-d: centre for epidemiological studies – depression scale; dass-21 = depression, anxiety & stress scale; stai = state-trait anxiety scale; pas = pregnancy anxiety scale; bai = beck anxiety inventory; gad-7 = general anxiety disorder; bdi-ii = beck depression inventory; psa = pregnancy specific anxiety scale; pra = pregnancy related anxiety scale; rct = randomized controlled trial; pss-10= perceived stress scale pss-10; pdq = pregnancy distress scale ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 issn 2563-9269 244 table 5. perinatal mindfulness intervention characteristics (components and design) with adult population study program format (components and design) weeks/hours setting (sessions conducted) timing of perinatal intervention (gestation) number of contacts provider beattie et al. (2017) australia mindfulness in pregnancy program (mipp) face to face (group) in-class: childbirth education and mindfulness practice. homework: meditation and readings 8 weeks/2 hours community 2nd and 3rd trimester multiple contacts midwife researcher/ investigator (jill beattie) trained in mindfulness-integrated cognitive behavioural therapy (micbt) byrne et al. (2013) australia mindfulness-based childbirth education (mbce) integrated msbr face to face (group) in-class: childbirth education and mindfulness practice. homework: audio recordings for practice 8 weeks/2.5 hours n/r 2nd and 3rd trimester multiple contacts childbirth educator, prenatal yoga teacher, and mbsr trainer duncan et al. (2017) usa mind in labour (mil): working with pain in childbirth based on mbcp face to face (group) in-class: mindfulness-based childbirth and parenting (mbcp) and mil components. homework: written material and audio recordings for practice 2.5 days/18 hours university/ academic 2nd and 3rd trimester multiple contacts senior mindfulness teacher and certified nurse midwife (nancy bardacke) duncan & bardacke (2010) usa mindfulness-based childbirth and parenting adapted from mbsr face to face (group) in-class: childbirth education and mindfulness practice. homework: audio recordings for practice 9 weeks/3 hours plus 7-hour silent retreat and postbirth reunion community 2nd and 3rd trimester multiple contacts author of mbcp (nancy bardacke; registered nurse midwife) dunn et al. (2012) australia mindful pregnancy and childbirth generic mindfulness face to face (group) in-class: mbct with adaptations. homework: audio recordings for practice 8 weeks/hours n/r n/r 2nd and 3rd trimester multiple contacts psychiatrist and counsellor ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 issn 2563-9269 245 study program format (components and design) weeks/hours setting (sessions conducted) timing of perinatal intervention (gestation) number of contacts provider goodman et al. (2014) usa coping with anxiety through living mindfully (calm) generic mindfulness face to face (group) in-class: mental health education and mindfulness practice. homework: audio recordings for practice 8 weeks/2hours university/ academic all 3 trimesters multiple contacts clinical social worker trained in msbr and mbctsupervised by advanced practice nurse trained in msbr and mbct guardino et al. (2014) usa mindful awareness practices (maps) generic mindfulness face to face (group) in-class: mindfulness education and practice. homework: audio recordings for practice 6 weeks/2hours university/ academic 1stand 2nd trimester multiple contacts trained map instructors krusche et al. (2018) united kingdom be mindful online* generic mindfulness online: video, written material; mindfulness practice. homework: written submission of practice 4 weeks/hours n/r at home (online) all 3 trimesters multiple contacts online using a secure site to collect the data matvienko-sikar & dockray (2017) united kingdom positive psychological intervention online: written and audio components. homework: n/r 4 times/week for 3 weeks/hours n/r at home (online) 1st and 2nd trimester multiple contacts online researcher produced audio for body scan practice ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 issn 2563-9269 246 study program format (components and design) weeks/hours setting (sessions conducted) timing of perinatal intervention (gestation) number of contacts provider muthukrishnan et al. (2016) india mindfulness meditation programme based on msbr face to face (group) in-class: mindfulness practice. homework: practice 2 sessions per week for 5 weeks n/r 1st and 2nd trimester multiple contacts trained university psychology department staff pan et al. (2019) taiwan mindfulness-based childbirth and parenting based on msbr face-to-face (group) in-class: childbirth education and mindfulness practice. homework: audio recordings for practice 6 weeks/3 hours session plus 7-hour silent retreat hospital 2nd and 3rd trimester multiple contacts wan-lin pan (principal investigator) trained in childbirth education; jon kabat-zinn (designed msbr); nancy bardacke (designed mbcp) townshend et al. (2018) australia caring for body and mind in pregnancy (cbmp) based on mbct face to face (group) in-class: childbirth education and mindfulness practice. homework: practice 8 weeks/hours n/r hospital all 3 trimesters multiple contacts three facilitators, one a mental health clinician vieten & astin (2008) usa mindful motherhood face to face (group) in-class: mindfulness education and practice. homework: readings and audio recordings for practice 8 weeks/2 hours hospital all 3 trimesters multiple contacts clinical psychologist trained in mindfulness and certified prenatal yoga instructor warriner et al. (2018) united kingdom mind in labour (mil): working with pain in childbirth based on mbcp face to face (group) in-class: childbirth education and mindfulness practice homework: practice 4 weeks/2.5 hours community 2nd and 3rd trimesters multiple contacts mbcp trained midwives teams ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 issn 2563-9269 247 study program format (components and design) weeks/hours setting (sessions conducted) timing of perinatal intervention (gestation) number of contacts provider woolhouse et al. (2014) – part 1 and 2 australia mindbabybody face to face (group) in-class: mindfulness practice. homework: audio recordings for practice 6 weeks/2 hours hospital all 3 trimesters multiple contacts psychiatrist/psychologist experienced in mindfulness group training mbi = mindfulness-based intervention; mbct = mindfulness-based cognitive therapy; n/r = not reported; mbcp = mindfulness-based childbirth and parenting; mbsr = mindfulness-based stress reduction ihtp, 1(2), 226-248, 2021 cc by-nc-nd 4.0 issn 2563-9269 248 table 6. comparison of suggested practices for adolescent education program development and perinatal mindfulness components and design features design features components suggested practices for adolescents effectiveness perinatal mindfulness intervention components and suggestions for adaptation facilitator capacity facilitator skill set and knowledge based in the developmental learning needs of adolescents (cheang et al., 2019; mckeering & hwang, 2019) broad training scope of facilitators (predominantly health care providers, experts in their population, not solely in mindfulness) delivery method web-based applications are feasible, acceptable, and accessible for adolescents (logsdon et al., 2013; rnao, 2010; statistics canada, 2017; stinson, willson, gill, yamada, & holt., 2009) online mindfulness interventions currently exist and would require developmentally age-appropriate modifications (krusche et al., 2018; matvienko-sikar & dockray, 2017) flexibility/adaptability adapt to the specific challenges of the teens (kostova et al., 2019) mindfulness interventions included studies which adapted interventions for perinatal populations interactive and engaging curriculum participatory and interactive; include role play and experiential learning (kostova et al., 2019) a variety of practices were included in the interventions: mindful movements, senses awareness and mindfulness meditation practice session length accommodate short attention spans – no longer than 90 minutes (kostova et al., 2019) varied in length; interventions as short as five minutes were effective and design could include gradual increase over time, as tolerated reflection/discussion discussing participant goals before the session; this may improve engagement and motivation (kostova et al., 2019) group discussion and writing/journaling support training (parent/caregiver or partner of adolescent) parent/caregiver and/or partner training in addition to adolescent training may be effective (kostova et al., 2019) partner training was included in 2 studies and could be adjusted to address parent-child dynamic (byrne et al., 2013; duncan & bardacke, 2010; warriner et al., 2018) 74 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 organizational culture, diversity, and employees' health in social/human services: a systematic review bharati sethi1, rosemary vito1, vanessa sonia ongbanouekeni1 1king’s university college, western university; london, ontario; canada corresponding author: b. sethi (bsethi3@uwo.ca) abstract leadership and organizational culture significantly impact employee work performance and job satisfaction, but less is known about employee health and well-being within a diverse work environment. this study systematically reviewed 23 studies published between 2007-2019 that addressed organizational culture, diversity/workplace, and employee health within north american social/human services organizations. results highlighted three themes: 1) organizational culture within social/human services, 2) diversity and workplace, and 3) employee health at the intersection of organizational culture and diversity. conclusions emphasize the need for organizations to adjust to changing workforce demographics and promote an equitable, healthy, and safe workplace culture. leaders must be proactive in creating workplace wellness and corporate wellness programs to promote employee well-being and productivity as well as improve organization’s financial health and enhance long-term sustainability. keywords organizational culture, leadership, diversity, employee health and well-being funding source this research was funded by the research grant 2020 awarded by king’s university college at western university of ontario. introduction in the management field, research on organizational culture and leadership has evolved. a previous systematic review identified the impact of organizational culture and the quality of interaction between leadership and employees in shaping employee work behaviour and the level of job satisfaction (tsai, 2011). however, there is less research on the influence of organizational culture on employee health within a diverse work environment (sethi, 2014). the dramatic changes in workplace demographics require an understanding of how organizational culture impacts underrepresented employees’ health and well-being. promoting equality and equity within organizations and reducing work-related stress is of paramount importance to employees’ psychosocial and physical health and organizations’ viability and effectiveness. the objective of this systematic review is to identify and to provide a broad overview of available evidence based literature on how organizational culture within social/human services intersects with diversity to influence the physical and mental/psychological health of workers within the north american context. our analysis contributes to the growing literature on occupational health and addresses the world health organization’s (who) concern regarding work related health problems across countries that are costly to the employee, employer, and the country’s economy (who, 2017). it is estimated that “work related health problems result in an economic loss of 4–6% of gdp for most countries” (who, 2017, key fact 5). 75 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 literature review the broad areas of focus for the systematic review are: 1) organizational culture within social/human services; 2) diversity and workplace; and 3) employee health in social/human services. as the field of human services continues to grow, the concept of ‘human services’ as a field and profession have been a focus of much debate (zins, 2001). for this review, social/human services organizations are defined as organizations that “meet human needs that are required for maintaining or promoting the overall quality of life of the prospective service populations.” (zins, 2001, p. 6-7). examples of human services include child welfare, youth agencies, health facilities, correctional facilities, nursing homes, and group homes. organizational culture within social/human services organizational culture is defined as the underlying shared values, beliefs and assumptions that influence how members think, feel, and behave. it is the dynamic process created through employees' interactions and the stabilizing force that prescribes rules for behavior within organizations (schein, 2010; collins, 2013). leaders have tremendous power to set the tone of organizational culture within the workplace through their values and behaviors (schein, 2010), attitudes towards inclusivity of diversity concerning employees' social locations (race, socioeconomic class, gender, immigration status, ability, and sexual orientation) and workplace supports (mccalla, 2015; vito & sethi, 2020). for example, the context of social work practice is heavily influenced by ethnocentrism and the profession's historical roots in an anglo-american culture that tends to undermine the experiences and values stance of minority workers and communities (yan, 2008; sethi & williams, 2016). the organization's system of beliefs is constituted by the ethical norms, value stance, shared beliefs and cultural background, the social ideologies and expectations, the morality, traditions, and customs within the organization that also shape its climate and culture (reynolds & bennett, 2019). the actions and behaviors of leaders such as micro-aggressions (sethi & williams, 2016), stigma and stereotyping, favoritism, intolerance, among other behaviors, can be risk factors that nurture an unhealthy organizational culture (collins & callahan, 2012; chenot et al., 2014; harris et al., 2018; mallinger et al., 2017; quick et al., 2017; fletcher & barroso, 2019). leadership and organizational culture have a reciprocal influence (schein, 2010). for example, the founders and leaders have a long-lasting legacy on organizational culture (hossein, 2018; weng, 2014). likewise, leaders' behaviours and engagement can also be shaped by the organizational culture, which guides their practices and actions in critical functions (austin, 2018). leaders influence organizational culture through their leadership styles, which have an impact on the climate within the organization (mccalla, 2015; mallinger et al., 2017; quick et al., 2017). an authoritarian leadership style focuses on hierarchy, prioritization of tasks over relationships, power abuses, privilege and inflexible attitudes that are ineffective (austin, 2018). evidence suggests that this leadership style negatively “influences outcome variables such as team interaction, organizational commitment, task performance, and extra-role performance” (du, li & luo, 2019. p. 2), which may indirectly negatively impact employee health and wellness. additionally, the organizational structure and institutional culture play a significant role in shaping organizational climate. organizational structure refers to the organizational hierarchy, system of practices and policies, and information flow between levels of management and workers (mallinger et al., 2017). institutional culture is the organization's symbolic representation, such as the mission statement, which defines the mandate and provides guidance for practice (yan, 2008). organizational climate refers to the shared understanding of the organizations' practices, policies, and procedures (schneider et al., 2013). it is formed by the day-to-day norms, including expected and rewarded behaviours. very recent empirical evidence confirms that regardless of the type of occupational sector (e.g., transportation, health care, agriculture, construction, etc.) “adverse work organization, specifically scheduling practices (e.g., long hours, shift work, etc.), and job stress (e.g., fast pace, time pressures) have been negatively associated with health behaviors and outcomes as well as health inequities” (hege et al., 2019, p.626). 76 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 organizations that foster a climate of wellness and a climate of inclusion (li et al., 2019) through building trust in co-worker relationships and having policies that promote wellness are effective in improving employee health and well-being and productivity (reynolds & bennett, 2019) for historically underrepresented employees. a climate of inclusion refers to perceived behaviours that include employees with diverse social locations, making them feel accepted and supported. in such a climate of inclusion leadership helps each member feel valued and appreciated for their unique contribution (brimhall & mor barak, 2018; leigh & melwani, 2019). with an increasingly diverse workforce in the western world, it is imperative that leaders foster an organizational structure, culture, and climate of inclusion to support employee health and wellness.. managing diversity continues to be an important and contentious topic within public and private sectors (weaver, 2008). diversity and workplace the north american workforce is projected to become increasingly diverse. laurent martel (2019) found that by 2036, in canada an estimated one in three people in the workforce will be foreign-born, and the proportion of people belonging to racialized backgrounds is also expected to increase. similarly, by the year 2030, nearly half of the workforce will be from a racialized and/or ethnic group, and by 2060, almost one in five of the us population will be foreign born (brimhall & mor barak, 2018). given the changing demographics within social/human services organizations, the need to maximize the potential benefits of workforce diversity becomes evident and even critical. workplace diversity generally refers to the acceptance and inclusion of employees regardless of similarities and differences among individuals along the dimensions of racialized background, ethnicity, socioeconomic status, gender, sexual orientation, immigration status, age, and ability (fazylova, 2019, para 2). organizational culture intersects with diversity based on socioeconomic status and education. educational attainment levels and occupational status have produced different occupational outcomes for employees and contribute to job inequality (o'donnell & kirkner, 2009; jang et al., 2017). for instance, higher education levels are associated with employees' increased feelings of inclusion within organizations (brimhall & mor barak, 2018). further, empirical evidence suggests that organizational culture greatly influence employers' attitudes, hiring intentions and behaviours towards workers with disabilities. hiring motives differ significantly, as for-profit organizations are mostly focused on efficiency and returns, while not-for-profit organizations are more geared towards social justice and effective client services (rimmerman et al., 2013). this has financial and social implications for workers who experience either cognitive or physical disability, such as a loss of income, health insurance or future pension contributions (cox & pardasani, 2013). similarly, issues related to social identity must be carefully understood from the perspectives of inclusion of minority employees. not all individuals identify with a binary concept of sex, gender, and/or orientation. transgender employees in social/human services organizations, despite legal protection, are subjected to discrimination and stigma, exclusion, harassment, and pay inequality, coupled with organization tolerance to bullying and other negatives practices towards them (gates & sniatecki, 2016). another example is the overt hostility, invisibility, interpersonal discomfort, and pressure to "cover" one’s sexuality often experienced by lgbtq2+ workers (bilimoria & stewart, 2009, p. 90 95). in some cases, workers experience multiple layered discrimination based on their sex, gender, and/or sexual orientation. racialized employees within social/human services organizations experience institutional racism (walter et al., 2016; sethi & williams, 2016; sethi, 2017). for example, immigrant racialized employees working in health care sector(s) in ontario, canada, experienced overt racism and microaggression (sethi, 2014; sethi & williams, 2016). the nature of diversity climate, or "employees' shared awareness and perceptions of their organization's diversity management system" is an essential factor in employees' perception of organizational inclusiveness (li et al., 2019, p. 362). li et al. (2019) found a positive correlation between minority employees' commitment to their organization and their feeling that management values difference and diversity, has engaged in diversity training, and diversified the workforce. workforce diversity enhances creativity and 77 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 innovation, improves workplace commitment, and increases organizational retention (brimhall & mor barak, 2018). however, within a diverse workforce, bullying, lack of management support, hostile interactions between employees, and limited opportunity to participate in decisions are considered work-related risk factors that can lead to physical and mental health problems for employees (burton, 2010). employee health in social/human services the who (2020) defines health "as the state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity" (para 1). health or lack thereof is the outcome of complex and intersecting social, economic, and political factors (institute of medicine, 2002) robertson & tinline (2008) provide convincing evidence that leaders’ and managers’ investment in employee health is critical to achieving organizational goals and performance. the authors also demonstrate that employees with a high level of psychological well being are more likely to accept critical feedback, are adaptable to change, and have healthy interpersonal skills necessary for customer satisfaction. it is noteworthy, that globally concerns and discussions around employee physical and mental health are shifting beyond its impact of organizational productivity to the pressure work-related illness is creating on the health care (or medical care) system (institute of medicine, 2002). for example, the institute of medicine (2002) notes that, “healthy employees consume fewer benefits in the form of benefit payments for medical care, shortand long term disability, and workers’ compensation” (section 3, para 1). regardless of the type and size of the organization, the “corporate wellness” programs (e.g., health related team building activities) that tailor programs, policies, and work environment to support the health and safety of all employees, promote employee well-being and productivity as well as have a positive impact on an organization’s financial health. ultimately, adapting a corporate wellness climate reduces “health-related costs for employees and employer” (dialogue, 2020, p. 4). disparities in health based on diversity factors such as age, ethnicity, immigration status, sexual orientation, and socioeconomic status health are well documented (burton, 2010). the way leaders engage with minority employees to create a climate of inclusion “is integral to the work of individuals and directly linked to the organization’s overall objectives.” (weaver, 2008, p. 115). when leaders value diverse perspectives and seek the opinions of others regardless of their job titles, they increase psychological safety and inclusiveness, which improves the organizational climate (brimhall & mor barak, 2018). in comparison, unhealthy and damaging organizational environments are characterized by weak peer relationships, harmful norms, perceived stigma, a hectic work pace, and indignity that can ultimately lead to adverse client outcomes and worker health outcomes (fernando, 2018). after all, "healthy agencies create healthy outcomes" (fernando, 2018, p. 53). employees who hold multiple identities, such as being a gay, muslim, working-class woman of color while being gay and a muslim with physical disabilities, are considered at increased risk of physical and mental health problems, due to the manifold and intersecting oppressions they face within social/human services organizations (sethi, 2014; mallinger et al., 2017). mccracken & phillips (2017) observe that “rampant homophobia, stigmatization, oppression and discrimination in many states unfortunately (but understandably) deter lgbti people from so identifying and seeking help for health problems” (p. 135). methods a systematic review was completed to identify and summarize the available empirical evidence on organizational culture and diversity. specifically, the review focused on the intersection of the organizational culture and diversity in influencing employee health in social/human services within the north american context. the review is organized as follows: first we outline our methodology and systematic review steps; second, we discuss the findings regarding diversity and employees' health within human service organizations; third, we present the discussion and implications of the study with the focus on employee’s health and wellness. search strategy title, abstracts, and keywords across the following databases were searched: canadian research index, cinahl, proquest social sciences, psychinfo, scholars portal, scopus, social services abstracts, social work 78 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 abstracts, sociological abstracts and web of science (appendix a). appendix a: literature review search and information sources databases period: 2007-17 period: 2017-19 total count canadian research index 0 0 0 cinahl 37 37 proquest social sciences 48 4 52 psychinfo 1 38 39 scholars portal 257 97 354 scopus 37 39 76 social services abstracts 33 28 61 social work abstracts 0 0 0 sociological abstracts 23 10 33 web of science 130 9 139 total 566 225 791 the research assistant also conducted a manual search through google scholar. the university librarian was consulted to ensure that the search was comprehensive, the research team did not miss any search terms or relevant articles, and to confirm the quality of searches. the search was restricted to peer-reviewed journal articles written in the english language from 2007 to 2019. studies using qualitative, quantitative, and mixed methods were included in the search. the following keywords were used in the search in varied combination: (organizational culture) and (social services or "social service* organization*" or "human service* organization*") and (diversity) and ("employee or worker") health and ("mental or psychological or physical") health and ("canada or united states or north america"). different words for diversity (sex, gender, ethnicity, religion, socio economic class, immigration status, and/or age were used in different combination: appendix b: inclusion criteria in data analysis rank inclusion criteria 0 does not address any of the inclusion criteria 1 health or organizational culture 2 organizational culture (with no impact on health) 3 organizational culture and its impact on health or diversity 4 organizational culture, its impact on health, and includes an element of diversity 5 organizational culture, its impact on health, diversity, and within the context of a social service organization inclusion criteria inclusion criteria were as follows: 1) original peer-reviewed articles published between 2007 to 2019 in english. this search period was selected to capture articles that reflected the critical changes in policies within the north american context (i.e., immigration policies, state laws on gender expression, and protection for lgbtq2+) and reflect workplace diversity. 2) social/human services studies conducted within north america. 3) articles that discussed organization culture as it relates to diversity and the health of employees. article selection the article selection was completed in two phases: (figure 1) 1) phase one: in the initial screening, the research assistant (ra) and two researchers (r1 and r2) searched keywords, study titles, and abstracts to identify studies in the area of social/human services that met the inclusion/exclusion criteria. an initial screening resulted in 791 peer-reviewed articles. second, the ra reviewed the list of 791 selected articles for duplicates. after removing the duplicates, 739 articles remained, of which 691 papers were rejected as they were out of context, meaning they were not peer-reviewed journal articles or not related to social/human services organizations, and/or the study was not conducted in north america. 2) in phase two: out of 739 articles, 47 full-text articles were assessed using the inclusion criteria. consequently, each article was placed in mendeley and information such as the author's name, the title, the year of publication, and the journal the article was published in, was entered. we used westhues et al. (2008) ranking system for quality appraisal of the 79 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 articles. each member of the research team read the full text of all articles and rated them using a zero to five likert scale making notes in mendeley on the rationale for their inclusion or exclusion. we reviewed each other's notes, and after a collaborative discussion between the team members, the articles ranked zero to three were excluded. out of 47 articles, 23 articles ranked four and five according to the inclusion criteria were included in the final study. subsequently, each article was placed in a microsoft excel file. information such as author, date of publication, country, study objective, sample, dependent and independent variable, and results were manually entered (table 1). results in the present systematic review, the results are based on the final selection of 23 articles. this section is divided into 1) organizational culture within social/human services, 2) diversity and workplace, and 3) employee health at the intersection of organizational culture and diversity. organizational culture within social/human services social/human services organizations are deeply embedded in western perspectives. their culture and practices are often culturally blind to the values of employees and clients who come from different backgrounds (yan, 2008; kikulwe, 2016; bent goodley et al., 2017; fernando, 2018). as discussed below, leaders’ engagement, organizational support, diversity management, along with the reduction of hierarchy, social control, and conformity expectations, as well as a climate of inclusion, are all positive ways that leaders can influence organizational culture. first, leaders' engagement, that is, a leader's ability to engage others in decision making, nurtures a positive workplace environment that yields increased worker retention and job satisfaction (brimhall, 2019). leaders' compassion, that is, the capacity of a leader to notice employee suffering and empathize with them, helps marginalized employees to feel empowered and to view their leaders as powerful allies, which fosters an inclusive organizational culture (leigh & melwani, 2019). moreover, workers are intrinsically rewarded by a supportive and appreciative workplace environment. organizational support refers to colleagues or managers that provide help or assistance to accomplish tasks (drolet et al., 2014). it includes emotional, informational, instrumental, strategic, professional, and relational support (martinez et al., 2016; mallinger et al., 2017; burke et al., 2018; kim et al., 2019). leaders can create a supportive environment through relationship building, rapport, and active listening skills. for example, sharing a meal together or holding regular meetings with staff members to hear their voices provides opportunities for relationship building and improves staff inclusiveness attitudes (fernando, 2018). healthy organizations place a priority on their human resources (quick et al., 2017, p. 294). leaders can also promote diversity and inclusive work culture through a diversity management approach. diversity management refers to the recruitment strategies, training, and mentoring programs that organizations use to create a more diverse workforce and to promote greater acceptance of employees from different identity categories (brimhall, 2019). in parallel, inclusion management denotes developing diversity-related policies and procedures that recognize, reward, and encourage employees' talents and participation in formal and informal organizational activities (brimhall, 2019). training and programs that educate and promote awareness and acceptance of workplace diversity may encourage individuals to be their authentic selves at work, and authenticity increases happiness, positive feelings, and well-being in and outside of work (martinez et al., 2016). when organizational leaders use their power to reduce the hierarchical distance in leader-employee relations, they create a positive and equitable workplace environment (walter et al., 2017). influential leaders respect their employees' rights, include them in decision-making, and are concerned with issues of fairness and organizational justice (quick et al., 2017). strategies such as open and honest communication, teamwork, consensus building, and mutual respect effectively develop and sustain teamwork and collaboration (mallinger et al., 2017). for example, 360-degree evaluations can be used for feedback and for keeping leaders accountable for their actions, their behaviours and their performance as leaders (mccalla et al., 2015). 80 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 nevertheless, yan’s research suggests that leaders can also use organizational culture as a means of social control to protect one group's interest or ideologies over others (yan, 2008). ingrained institutional racism in organizational norms and policies and hidden biases justifies the marginalization of racialized employees by the dominant white staff, further contributing to their economic and social exclusion. if unchecked, these organizational biases have a powerful effect in maintaining invisible structural barriers in social/human services organizations (walter et al., 2016) forcing them to assimilate and conform (collins, 2013). conformity expectations permeate the organizational culture of most social/human services organizations, which in turn limit the political, social, and protective freedoms of workers (collins, 2013). conformity expectations result in minority groups becoming the object of the dominant group's exercise of power, often using morality to justify hostile or aggressive actions against other groups (mccalla, 2015). when employees receive recognition from supervisors consistently, or when leaders use an affirmative and appropriate language that supports employees' diverse identities and acknowledge employees' oppression and prejudices, organizational tolerance for discrimination decreases, and respect and inclusion are highly promoted (sangganjanavanich et al., 2013; martinez et al., 2016; jang et al., 2017). leaders can influence work climate and culture, thus impacting organizational performance (brimhall, 2019). a climate of inclusion helps employees feel safe to share their ideas and provides space for innovation. in health-care organizations, inclusion and innovation are “critical to improving quality of care because it fosters the development of new ideas relevant to patient care” and has the potential to improve the quality of care and services (brimhall, 2019, p. 719). internationally, studies on inclusion in diverse occupations including trade finance, insurance, public assistance, education, finance, and human services demonstrate that authentic leadership and a climate of inclusion promoted a favorable diversity climate and were associated with improved organizational performance and outcomes (brimhall, 2019). diversity and workplace empirical evidence points to a correlation between work-related stress and specific socio-demographic characteristics of employees (marinaccio et al., 2013) such as socio-economic status (ses), gender, sexual orientation, and race. the dominant power structure within organizations that adheres to classism, patriarchy, heterosexism, and racism influences the work experiences of minority employees. ses includes income, education, finances, social status/class, quality of life and opportunities / privileges (american psychological association, 2017). the review findings revealed three points concerning the socioeconomic status and workplace inclusion. first, higher education levels are associated with increased feelings of workplace inclusion (brimhall, 2019; quick et al., 2017). second, seniority status greatly determines employees' decision-making power. third, employees with a high-level ses benefit from variability in their schedules, yielding positive outcomes such as the capacity to work longer hours, improved sleep, opportunity to exercise, work-family life balance and reduced work-family conflict (kossek & lautsch, 2018). thus, employees' experiences significantly differ based on their ses classification, affecting their health, work-life, and family outcomes. given neoliberalism and the widening gap between the rich and poor, it is crucial to capture how employee ses influences workplace contexts, such as opportunities for promotion and the ability to maintain a work-life balance. the findings of ses are very relevant to the health of employees. in a recent study, for example, mccracken & phillips (2017) found that promoting fair employment and decent work can help to close the health gap in a generation. gender emerged as another critical variable concerning employees’ experiences. social/human services organizations are overwhelmingly female dominated. women make up nearly half of the workforce in for-profit organizations and three quarters in nonprofit organizations (kosny et al., 2010). however, for these women, a numerical advantage in the workplace does not always equate with gender equality and power/control (mallinger et al., 2017). for example, men occupy most supervisory and leadership positions (kosny et al., 2010; quick et al., 2017). female employees consistently earn less than men and have fewer leadership opportunities (mallinger et al., 2017). women, especially racialized women, are relegated to lower positions, with white males as decision-makers, which further reinforces 81 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 their subordinate status in society and perpetuates gender workplace inequality (harris et al., 2018). moreover, they often experience gender and sexual harassment (quick et al., 2017). lgbtq2+ employees are often marginalized due to heteronormativity, which is the societal expectation that everyone conforms to the norm of being heterosexual (mccalla, 2015). this can silence lgbtq2+ employees and those considered deviant from implicitly expected norms within organizations (collins & callahan, 2012; collins, 2013). these workers often experience workplace bullying, exclusion, and isolation, due to their perceived rather than actual sexual orientation (mccalla, 2015; gates et al., 2019). employees also experience discrimination, workplace harassment and bullying, if someone perceives them to be a member of the lgbtq2+ community (mccalla, 2015; gates & sniatecki, 2016). organizational leaders ignore four in ten complaints of workplace bullying, revealing organizational tolerance for bullying. the average employee perceived that making a formal complaint would be risky, not be taken seriously, and no formal warning or further action would result (mccalla, 2015). similarly, sexual minority employees experience adverse career consequences, including discrimination in hiring, tenure and promotion, exclusion from professional networks, and devaluation at work. for example, some employees reported not securing a job or promotion at work because they identified as gay (bilimoria & stewart, 2009), and transgender employees reported being overlooked in hiring, fired, or denied a promotion (gates & sniatecki, 2016). the review also revealed that employees' racialization is deeply rooted in colorblind societal values. daniel kikulwe (2016) identified “status/role incongruence, ghettoization and disempowerment… and silent discourse" among racialized/immigrant social workers (p. 113). racialized immigrants are relegated to unskilled labor markets regardless of their professional competence and qualifications (sethi, 2014; kikulwe, 2016; sethi & williams, 2016). managers and supervisors discounted their knowledge and expertise unless it benefitted the organization. ghettoization occurred when managers needed workers to assist with cultural knowledge exchange with clients from similar backgrounds, even though their voice did not inform decision making. case-matching workers solely based on race and cultural background can be harmful to clients, as being the same race does not imply a shared cultural values stance (kikulwe, 2016). kikulwe (2016) also found a tendency to silence race topics and concerns of racialized employees within organizations. this colorblind approach contributed to maintaining workplace status-quo, power imbalances and discriminatory institutional practices, while speaking out meant backlash and punishment, further silencing racially diverse employees. conversations on race within the workplace can build relationships between racialized and non-racialized employees and leaders. this is critical to support a healthy and inclusive organizational culture (kikulwe, 2016) and reduce the hierarchy between leaders and employees, resulting in improved organizational outcomes (mallinger et al., 2017). racialized workers negotiate power within predominantly white social/human services organizations through either conformity, collaboration, or conflict (kikulwe, 2016; vito & sethi, 2020). conformity is the most prevalent strategy, and collaboration allows racialized workers to feel more included, while conflict creates more tensions, and those who speak out are considered pushy and conflictual (kikulwe, 2016). hence, racialized employees are continually struggling to navigate cultural pressures and adopt coping strategies to stay employed. workers and clients who self-identify with a linguistic minority also highlight the existence of discrimination and structural barriers. bilingual professionals have dealt with overwhelming and excessive workloads, representing discrimination and social exclusion. they encounter additional tasks, a shortage of interpretive services, culturally adapted and translated resources, and possible repercussions if they offer services in a language other than the client's choice (chenot et al., 2014; drolet et al., 2014). in sethi’s (2014) previous study, she noted that workplace discrimination and marginalization in their employment was detrimental to immigrant women’s physical and psychological health (sethi, 2014) 82 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 employee health at the intersection of organizational culture and diversity employees who self-identify with a minority group experience various workplace strain. their stigmatized experience negatively affects their personal feelings, professional performance and productivity, and job satisfaction (sangganjanavanich et al., 2013; jang et al., 2017). workers from socially marginalized groups experience verbal, sexual and physical harassment, and increased emotional labor as they suppress anger, fear, or frustration (kosny & maceachen, 2010). experiences of sexual harassment in the workplace are negatively correlated with employee job satisfaction, organizational commitment, work productivity, turnover intent, long-term anxiety, job stress, and burnout (quick et al., 2017). sexual harassment experiences also positively correlated with psychological distress, negative moods, depression, post-traumatic stress disorder, and anxiety, especially for men (quick et al., 2017). sexually minority employees use strategies to manage the stigma and adverse consequences described above, including creating a false identity, concealing information, using discretion and silence, or not disclosing their sexual identity (collins & callahan, 2012). these approaches ultimately carry additional burdens of stress, as they struggle with having to conceal their authentic identities (bilimoria & stewart, 2009). in some cases, they decide to stay, leave, or pursue a new career path that provides them with an opportunity to express their authentic selves (sangganjanavanich et al., 2013). closeted sexuality in the workplace impacts turnover as three-quarters of closeted lgbtq2+ employees leave the organization within three years (collins & callahan, 2012). masculinized industries that isolate gay men and do not provide safe spaces to engage with other employees result in stress related to gay identity and work environment (collins, 2013). in bilimoria & stewart’s (2009) study with faculty members from lgbtq2+ populations, the participants experienced the work environment as hostile towards them. as a result, they lived in a constant state of fear and vigilance and spent enormous labor trying to interpret clues to their colleagues’ behaviors and speculating if an incident occurred due to their sexual identity or other factors. such “labor adds to the psychological cost of social interactions for minorities of all kinds” (bilimoria & stewart, 2009, p. 92), leads to disempowerment and disheartenment (yan, 2008), subsequently affecting their job satisfaction (jang et al., 2017). racial discrimination is positively correlated with fatalism, feeling powerlessness, guilt, and remorse from being silent, and isolation that can manifest physically or through social exclusion (bilimoria et al., 2009; kikulwe, 2016). another diversity factor, ses influences one's sense of self and identity and is a social determinant of health (sdoh) (mikkonen et al., 2010). within management literature there are very few studies concerning ses inequalities relationship to racial inequalities, job satisfaction and well-being. finally, it is important to note that bilingual professionals also expressed feelings of anxiety and inferiority about providing service delivery in their second language, yet they were expected to perform at a high level in both spoken languages (drolet et al., 2014). negative work interactions and weak peer relationships also had a negative impact on employees, as they were unhappy and dissatisfied with their job, and brought this into their personal life, at home with their partner, family, and community (gates & sniatecki, 2016). hence, these marginalized employees experienced isolation and exclusion, negatively impacting their well-being and safety in the workplace (collins, 2013). discussion and study implications the objective of this systematic review was to provide a broad overview of available evidence-based literature on how organizational culture intersects with diversity to influence the physical and mental/psychological health of employees in social/human services organizations within the north american context. leaders' engagement and compassion towards staff are effective ways to develop a healthy organizational culture that is inclusive of diversity (brimhall, 2019; leigh & melwani, 2019). leaders and managers can facilitate inclusion by providing organizational supports including emotional, informational, instrumental, strategic, professional, and relational (burke et al. 2018; kim et al. 2019; mallinger et al., 2017; martinez et al., 2016). healthy organizations prioritize their human resources (quick et al., 2017) and have an inviting and affirming environment. such workplace culture facilitates 83 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 workplace friendships, encourages employees to talk about identity issues, and seeks guidance from others. workplace friendships and relationship building help mitigate these tensions and help organizations reap the potential of workforce diversity. friendships positively influence employees' well-being, attitudes, job performance and job satisfaction (gates et al., 2019). hence, promoting safe and healthy workplaces in social/human service organizations is paramount to improving productivity and achieving organizational goals. an unhealthy and negative workplace environment can entail financial costs to organizations (miller & ngunjiri, 2015) due to increased employee absenteeism, lateness, resignations and turnover, or loss of productivity and service delivery because of tarnished organizational reputations (cox et al., 2013; quick et al., 2017; kim et al. 2019). in canada, large and small employers are now using "workplace wellness" programs and activities (e.g. stress management workshop) “to help employees improve health and reduce healthcare costs” (dialogue, 2020, p. 4). while workplace wellness and corporate wellness (noted earlier in the paper) programs share a common focus to enhance the health and well-being of employees, wellness programs are offered by the employer as part of employees’ health plan (dialogue, 2020). employees who are experiencing work stress are likely to engage in unhealthy behaviors such as substance abuse (dialogue, 2020). for example, an analysis of fortune 500 companies found employment stress is a risk factor to substance abuse disorders (institute of medicine, 2001). further, there is a causal relationship between lack of social support networks and adverse health consequences. many of these lifestyle related behaviors are preventable (institute of medicine, 2001). workplace wellness programs have been reported to “effectively stop bad habits before they become health risks” (dialogue, 2020, p. 4). in parallel, linda emma (2019) observes that diversifying a workforce has multiple positive outcomes for organizations, such as enhanced creativity due to various perspectives, improved workplace culture and cross-cultural communication, and financial productivity as employers meet diverse demands of clients. however, a lack of organizational commitment from historically disadvantaged groups is due to an organizational failure of the diversity promise or an inclusive workforce (li et al., 2019). diversity promise is achieved when employers intentionally create safe and inclusive workplaces (collins & callahan, 2012). all employees contribute towards organizational goals, feel valued, and reach their full potential (li et al., 2019). when employees are meaningfully represented, their social identity is celebrated and valued, and a climate of inclusion is fostered, resulting in their improved emotional commitment and in increased organizational outcomes (li et al., 2019). creating a positive, trusting, and respectful workplace environment is essential for employees to flourish (gates & sniatecki, 2016). diversity and inclusion training is an important, relevant strategy for social/human services organizations to raise awareness of specific diversity issues and improve both employees' and organizational outcomes. social/human service organizations need to be proactive in increasing employers' and employees' knowledge, understanding (cox & pardasani, 2013), awareness of biases, consequences, and behavioral changes (quick et al., 2017). examples of such initiatives include leadership development programs on lgbtq2+ issues, workplace ally programs as a support network for marginalized colleagues, and skills-based training programs to challenge harmful organizational norms and encourage behavior changes (collins & callahan, 2012; quick et al., 2017). workplace training focused on conflict resolution, intercultural communication, gender relationships, and reducing the risk of bullying marginalized employees can help develop a supportive workplace environment (mccalla, 2015). gender harassment and discrimination, especially for women, might be mitigated by male supervisors or co-workers' social support, leading to greater job satisfaction (quick et al., 2017). increased representation of women in leadership roles would increase social change advocacy for these marginalized groups (mallinger et al., 2017). mentoring is a protective factor in employees' coping with workplace stresses. employees are provided with professional and relational support, leading to increased self-confidence in job performance and professional impact. such relationships are also crucial for employees' career development (mallinger et al., 2017). for example, mentoring promotes women's progress within organizations that disadvantage women. specialized mentoring 84 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 programs for lgbtq2+ employees might also increase their awareness and knowledge about available career counselling resources within organizations (collins, 2013). finally, for those assisting transgender individuals, they are recommended to seek mentoring from professionals with extensive experience in this area (sangganjanavanich et al., 2013). conclusion diversity in the workplace has become an important goal for organizations seeking to gain a competitive advantage in the global economy (cox, 2001). promoting a diverse workforce must include a significant culture shift within the organization to achieve meaningful and equitable inclusion of underrepresented groups (feyes et al., 2018). organizational and institutional policies, practices and programs must reflect equity, diversity, and inclusivity to create and sustain a healthy workplace environment. change begins at the top with organizational leaders' commitment to addressing racism and gender inequity within their workplace (creary, 2020). creary (2020) recommends that leaders produce transparent policies, initiate compassionate and uncomfortable conversations about socioeconomic status, race and/or sex/gender identity, and develop bold and innovative strategies. when employees feel valued, there is trust and relationship building in the organization, enhancing the climate for inclusion, innovation, and workplace outcomes including job satisfaction (brimhall, 2019). similarly, improving the wellness and safety climate is positively correlated with improved health outcomes for employees, such as reduced stress and increased commitment (collins & callahan, 2012). given the correlation between a culture of inclusion and wellness and employee health, the need for organizations to adjust to evolving workforce demographics and become learning-oriented is more acute than ever. learning organizations have a positive, supportive, inviting, and welcoming work environment that fosters employees' trust, welcomes individuality, and ensures that mistakes are viewed as learning opportunities (brimhall, 2019). organizations should focus on building and sustaining an inclusive and diverse workplace culture that allows diversity to be embraced, celebrated, and thrive. references american psychological association. (2017). education and socioeconomic status. https://www.apa.org/pi/ses/resources/publ ications/education austin, m. j. (2018). social work management practice, 1917–2017: a history to inform the future. social service review (chicago), 92(4), 548–616. https://doi.org/10.1086/701278 bent-goodley, t., snell, c., & carlton-laney, i. (2017). black perspectives and social work practice. journal of human behavior in the social environment, 27(1-2), 27–35. https://doi.org/10.1080/10911359.2016.12 52604 bilimoria, d., & stewart. a., j. (2009). “don’t ask, don’t tell”: the academic climate for lesbian, gay, bisexual, and transgender faculty in science and engineering. nwsa journal, 21(2), 85–103. https://doi org.proxy1.lib.uwo.ca/10.1002/cjas.1438 brimhall, k. (2019). inclusion is important . . . but how do i include? examining the effects of leader engagement on inclusion, innovation, job satisfaction, and perceived quality of care in a diverse nonprofit health care organization. nonprofit and voluntary sector quarterly, 48(4), 716–737. https://doi.org/10.1177/089976401982983 4 brimhall, k. c. & mor barak, m. (2018). the critical role of workplace inclusion in fostering innovation, job satisfaction, and quality of care in a diverse human service organization. human service organizations, management, leadership & governance, 42(5), 474–49. https://doi.org/10.1080/23303131.2018.15 26151 burke, s. (2018). supporting indigenous social workers in front-line practice. canadian social work review, 35(1), 5–25. https://doi.org/10.7202/1051100ar burton, j. (2010). who healthy workplace framework and model. https://www.who.int/occupational_health/ healthy_workplace_framework.pdf chenot, d., boutakidis, i., & benton, a. (2014). equity and fairness perceptions in the child welfare http://www.apa.org/pi/ses/resources/publ http://www.who.int/occupational_health/ 85 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 workforce. children and youth services review, 44, 400–406. https://doi.org/10.1016/j.childyouth.2014.0 7.006 collins, j. (2013). stress and safety for gay men at work within masculinized industries. journal of gay & lesbian social services, 25(3), 245–268. https://doi.org/10.1080/10538720.2013.80 6878 collins, j., & callahan, j. (2012). risky business: gay identity disclosure in a masculinized industry. human resource development international, 15(4), 455–470. https://doi.org/10.1080/13678868.2012.70 6427 cox, c., & pardasani, m. (2013). alzheimer’s in the workplace: a challenge for social work. journal of gerontological social work, 56(8), 643–656. https://doi.org/10.1080/01634372.2013.82 1693 cox, t. (2001). creating the multicultural organization: a strategy for capturing the power of diversity. san francisco: jossey bass. creary, s. (2020). how company leaders can promote racial justice in the workplace. wharton magazine. https://www.strategy business.com/article/how-company leaders-can-promote-racial-justice-in-the workplace dialogue. (2020). the ultimate guide to corporate wellness strategies for canadian hr leaders. https://cdn2.hubspot.net/hubfs/5213739/u ltimate%20guide%20to%20corproate%20 wellness.pdf drolet, m., savard, j., benoît, j., arcand, i., savard, s., lagacé, j., lauzon, s., & dubouloz, c. (2014). health services for linguistic minorities in a bilingual setting: challenges for bilingual professionals. qualitative health research, 24(3), 295–305. https://doi.org/10.1177/104973231452350 3 du, j., li, n., & luo, y. (2019). authoritarian leadership in organizational change and employees’ active reactions: have-to and willing-to perspectives. frontiers in psychology, 10, 3076–3076. https://doi.org/10.3389/fpsyg.2019.03076 emma, l. (2019). advantages and disadvantages of diversity in the workplace. https://smallbusiness.chron.com/advantage s-disadvantages-diversity-workplace-3041 fazylova, a. (2019). the definition of diversity in the workplace has changed here’s what that means for your business. https://www.hrtechnologist.com/articles/di versity/the-definition-of-diversity-in-the workplace-has-changed-heres-what-that means-for-your-business/ fernando, r. (2018). i love the profession but hate where i work: remembering the value of organizations in social work practice. reflections: narratives of professional helping, 24(1), 45–55. https://reflectionsnarrativesofprofessionalh elping.org/index.php/reflections/article/vie w/1509/1522 feyes, e., applegate, j., baumer, c., clouner, c., colvell, k., erdeljac, p., fawley, e., finnegan, a., fowler, n., frey, s., griffin, h., guido, j., hustead, e., mircoff, e., moffitt, t., roberts, r., metelko rosebrook, h., schwartz, l., smiley, f., westrick. c., & schreiber, l. (2018). leadership in healthcare and public health. the ohio state university pressbooks. file:///c:/users/bhara/downloads/leadersh ip-in-healthcare-and-public-health 1587236671.pdf fletcher, e., & barroso, a. (2019). organizational dynamics at a peer respite: a focused ethnography of an emergent strategy. social work in mental health, 17(5), 509– 532. https://doi.org/10.1080/15332985.2019.15 79157 gates, t. g., & sniatecki, j. l. (2016). tolerating transphobia in substance abuse counseling: perceptions of trainees. human service organizations, management, leadership & governance, 40(5), 469–485. https://doi.org/10.1080/23303131.2016.11 70089 gates, t.g., rich, t., & blackwood, r. (2019). workplace friendships among social work, counseling, and human service educators: exploring the impact of sexual orientation and friendships in workplace http://www.hrtechnologist.com/articles/di 86 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 empowerment. journal of workplace behavioral health, 34(1), 20–37. https://doi.org/10.1080/15555240.2018.15 53622 harris, g.l.a., finn sumner, r., & gonzalez-prats, m.c. (2018). women veterans: lifting the veil of invisibility. new york, ny. https://doi.org/10.4324/9781351201155 hege, a., lemke, m., apostolopoulos, y., & sönmez, s. (2019). the impact of work organization, job stress, and sleep on the health behaviors and outcomes of u.s. long-haul truck drivers. health education & behavior, 46(4), 626–636. https://doi.org/10.1177/109019811982623 2 hossein, c. s. (2018). a black perspective on canada’s third sector: case studies on women leaders in the social economy. journal of canadian studies, 51(3), 749– 781. https://doi.org/10.3138/jcs.2017 0040.r2 institute of medicine (us) committee on assuring the health of the public in the 21st century. (2002). 6, employers and business. in the future of the public's health in the 21st century. national academies press (us). https://www.ncbi.nlm.nih.gov/books/nbk2 21235/ jang, y., lee a. a., zadrozny, m., bae, s.h., kim, m.t., & marti, n.c. (2017). determinants of job satisfaction and turnover intent in home health workers: the role of job demands and resources. journal of applied gerontology, 36(1), 56–70. https://doi.org/10.1177/073346481558605 9 kikulwe, d. (2016). racialization, silences, and the negotiation of power within child welfare institutions in ontario. canadian ethnic studies, 48(3), 109–127. https://doi.org/10.1353/ces.2016.0028 kim, j., yi, e.‐h., pierce, b. & hall, j. (2019). effective workload management in child welfare: understanding the relationship between caseload and workload. social policy & administration, 53(7), 1095–1107. https://doi.org/10.1111/spol.12499 kosny, m., & maceachen, e. (2010). gendered, invisible work in non‐profit social service organizations: implications for worker health and safety. gender, work, and organization, 17(4), 359-380. https://doi.org/10.1111/j.1468 0432.2009.00460.x kossek, e.e., & lautsch, b. a. (2018). work–life flexibility for whom? occupational status and work–life inequality in upper, middle, and lower-level jobs. the academy of management annals, 12(1), 5–36. https://doi.org/10.5465/annals.2016.0059 leigh, m. (2019). blackemployeesmatter: mega threats, identity fusion, and enacting positive deviance in organizations. the academy of management review, 44(3), 564–591. https://doi.org/10.5465/amr.2017.0127 li, y., perera, s. kulik, c. t., & metz, i. (2019). inclusion climate: a multilevel investigation of its antecedents and consequences. human resource management, 58(4), 353– 369. https://doi.org/10.1002/hrm.21956 mallinger, g., & starks, s. (2017). women social workers: a road map to gender equity. affilia, 32(1), 81–91. https://doi.org/10.1177/088610991664776 6 marinaccio, a., ferrante, p., corfiati, m., di tecco, c., rondinone, b., bonafede, m., ronchetti, m., persechino, b., & iavicoli, s. (2013). the relevance of socio-demographic and occupational variables for the assessment of work-related stress risk. bmc public health, 13(1), 1157–1157. https://doi.org/10.1186/1471-2458-13 1157 martel, l. (2019). the labour force in canada and its regions: projections to 2036. statistics canada catalogue no. 75 006 x. https://www150.statcan.gc.ca/n1/pub/75 006-x/2019001/article/00004-eng.htm martinez, l. r., sawyer, k. b., thoroughgood, c. n., ruggs, e. n., & smith, n. a. (2017). the importance of being “me”: the relation between authentic identity expression and transgender employees’ work-related attitudes and experiences. journal of applied psychology, 102(2), 215–226. https://doi.org/10.1037/apl0000168 mccalla, s. (2015). policy characteristics for the prevention of workplace bullying anteceded by heterosexism: a delphi study. journal of psychological issues in organizational http://www.ncbi.nlm.nih.gov/books/nbk2 87 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 culture, 6(2), 39–62. https://doi.org/10.1002/jpoc.21180 mccracken, k., & phillips, d. (2017). global health: an introduction to current and future trends (second edition.). routledge. https://doi.org/10.4324/9781315691800 mikkonen, r. (2020). social determinants of health: the canadian facts (2nd edition). https://thecanadianfacts.org/ miller, d. w., & ngunjiri, f. w. (2015). leadership views on corporate chaplains: business, sociocultural, and spiritual justifications. journal of management, spirituality & religion, 12(2), 129–155. https://doi.org/10.1080/14766086.2014.95 0318 o’donnell, j., & kirkner. s. j. (2009). a longitudinal study of factors influencing the retention of title iv-e master’s of social work graduates in public child welfare. journal of public child welfare, 3(1), 64–86. https://doi.org/10.1080/155487308026908 41 quick, j. m., & mcfadyen, m. a. (2017). sexual harassment: have we made any progress? journal of occupational health psychology, 22(3), 286–298. https://doi.org/10.1037/ocp0000054 reynolds, g. s., & bennett, j. b. (2019). a brief measure of organizational wellness climate: initial validation and focus on small businesses and substance misuse. journal of occupational and environmental medicine, 61(12), 1052–1064. https://doi.org/10.1097/jom.00000000000 01739 rimmerman, a., araten-bergman, t., hernandez, b., & chen, b. (2013). israeli employers’ hiring intentions for recruiting employees with disabilities: how do they compare with u.s. employers? social work in disability & rehabilitation, 12(3), 176–193. https://doi.org/10.1080/1536710x.2013.81 0097 robertson, i., & tinline, g. (2008). understanding and improving psychological well-being for individual and organisational effectiveness. in kinder, a., hughes, r. & cooper, c. l. (pp 39-49), employee well‐being support, 39 49. john wiley & sons, ltd. https://doi.org/10.1002/9780470773246.ch 3 sangganjanavanich, v. f., & headley, j. a. (2013). facilitating career development concerns of gender transitioning individuals: professional standards and competencies. the career development quarterly, 61(4), 354–366. https://doi.org/10.1002/j.2161 0045.2013.00061.x schein, e. (2010). organizational culture and leadership. (4th edition). san francisco, ca: jossey-bass. schneider, b., ehrhart, m. g., & macey, w. h. (2013). organizational climate and culture. annual review of psychology, 64, 361–38 sethi, b. (2014). "intersectional exposures: exploring the health effect of employment with kaajal immigrant/refugee women in grand erie through photovoice" theses and dissertations (comprehensive). 1659 sethi, b. & williams, a. (2016). microaggressions of caregiver employees: what has social work got to do with it? diversity and equality in health and care, 13 (5), 365-371. sethi, b. (2017). unmasking racism. studies in social justice, 11(2), 333-337. tsai, y. (2011). relationship between organizational culture, leadership behavior and job satisfaction. bmc health services research, 11(1), 98–98. https://doi.org/10.1186/1472-6963-11-98 vito, sethi. (2020). managing change: role of leadership and diversity management. journal of organizational change management. 33(7), 1471–1483. walter, a. w., ruiz, y., tourse, r. w. c., kress, h., morningstar, b., macarthur, b., & daniels, a. (2016). leadership matters: how hidden biases perpetuate institutional racism in organizations. human service organizations, management, leadership & governance, 41(3), 213–221. https://doi.org/10.1080/23303131.2016.12 49584 weng, s. (2014). founding of ethnic programs and agencies for asian americans: an exploration of strategies & challenges. human service organizations, management, leadership & governance, 38(1), 55–73. https://doi.org/10.1080/03643107.2013.85 3010 weaver, d. (2008). managing diversity. in employee well‐being support,111-118. john wiley & 88 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 sons, ltd. https://doi.org/10.1002/9780470773246.ch 10 westhues, a., ochocka, j., jacobson, n., simich, l., maiter, s., janzen, r., & fleras, a. (2008). developing theory from complexity: reflections on a collaborative mixed method participatory action research study. qualitative health research, 18(5), 701–717. https://doi.org/10.1177/104973230831653 1 world health organization. (2017). protecting workers health. https://www.who.int/news-room/fact sheets/detail/protecting-workers' health#:~:text=health%20coverage%20of% 20workers,of%20occupational%20diseases %20and%20injuries.&text=there%20are%2 0effective%20interventions%20to%20preve nt%20occupational%20diseases. world health organization. (2019). mental health in the workplace. https://www.who.int/news room/commentaries/detail/mental-health in-the-workplace world health organization. (2020). constitution. https://www.who.int/about/who-we are/constitution yan, m. c. (2008). exploring cultural tensions in cross-cultural social work practice. social work, 53(4), 317–328. https://doi.org/10.1093/sw/53.4.317 zins, c. (2001). defining human services. journal of sociology & social welfare, 28(1), 3–21. https://link.gale.com/apps/doc/a76515983 /aone?u=lond95336&sid=aone&xid=777d a5ce http://www.who.int/news-room/facthttp://www.who.int/newshttp://www.who.int/about/who-wehttps://link.gale.com/apps/doc/a76515983/aone?u=lond95336&sid=aone&xid=777da5ce https://link.gale.com/apps/doc/a76515983/aone?u=lond95336&sid=aone&xid=777da5ce https://link.gale.com/apps/doc/a76515983/aone?u=lond95336&sid=aone&xid=777da5ce 89 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 739 records after duplicates removed. 47 full-text articles assessed for eligibility using westhues (2008) ranking system 23 articles included in the final review. 361 articles excluded due to irrelevant. 408 articles after other exclusions. 331 articles excluded due to other inclusions (conference abstracts, editorials, letters, book reviews) search strategy (database searching) = 791 articles canadian research index =0 cinahl =37 proquest social sciences =52 psychinfo =39 scholars portal =354 scopus = 76 social services abstract = 61 social work abstracts = 0 sociological abstracts = 33 web of science = 139 duplicates = 52 24 articles were excluded figure 1: flow chart 90 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 table 1: descriptive summary of the 23 studies included in the review authors (year). country objective results or summary type of study study objective sample dependent variable independent variable results bent goodley & snell (2017). us. literature review this article examines, reviews, and situates black perspectives in the discourse of social work. there is no one black perspective, rather, there is diversity in expression and experience. the diversity in these models is part of the strength of the black perspectives. bilimoria & stewart (2009). us. in-depth interviews this study explores the workplace inclusiveness climate for lgbt faculty specifically in science and engineering disciplines. universities (n = 2) 14 participants (n =4 men; n= 10 women) a hostile work climate can have a psychological impact on lbgt faculty members such as fearfulness, restricted relationships and workplace friendships, emotional labor to fit in, relative isolation, and can often lead to negative career outcomes. brimhall & mor barak (2019). us. quantitative surveys this article examines the relationships between leader engagement, inclusion, and innovation, in the non-for-profit sector. time 1: initial demographic survey = 277 participants main survey 213 participants time 2: demographic survey 292 participants main survey 245 participants time 3: demographic survey 259 participants) main survey 239 participants 1) employees' job satisfaction, 2) perceived quality of care. 1) leader engagement, climate for inclusion 2) climate for innovation using subscales from the mor barak inclusion exclusion scale (mor barak, 2014). leaders’ engagement and inclusive attitudes and behaviors are associated with increased climate for inclusion and improved perceived quality of care through an increased climate of innovation. burke (2018). canada. semi structured interviews this study explores the experiences of indigenous social workers in british columbia (bc), 09 semi-structured interviews to 09 first nations and métis social the agencies still operate under a linear western paradigm that does not allow for an inclusion of indigenous worldviews 91 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 and how social/human services organizations can better serve their indigenous workers. workers in british columbia. and/or knowledge. there is need for organizational support and to maintain a wellness climate within the organization. chenot et al. (2014). us. structured interviews this study explores the ways in which organizations can better support the indigenous social workers they employ. ethnicity does not appear to be a pervasive factor in determining perceptions of equity in child welfare services organizations in the study. collins (2013). us. narrative case study this article examines the safety and stress concerns of gay men in masculinized industries. discriminatory behaviors such as hegemonic masculinity and one dimensional dialogue lead to limited opportunities for workplace friendships, which can cause for non-gender conforming individuals within masculinized industries. collins & callahan (2012). us. qualitative historical case study this article explores the challenges of disclosure for gay male professionals in masculinized industries within human resource development (hrd). the fear inspired by both being gay in muscularized industries and coming out to the marginalized group breeds anxiety and stress. this experience can reduce employee performance and result in higher job turnover. cox & pardasani (2013). us. quantitative surveys this article explores employers' responses to dementia in the workplace and its impacts both for caregiving employees and employees with a cognitive impairment. the surveys were completed by 103 human resources professionals. 1) experience with employee caregivers, 2) employees with symptoms of alzheimer’s disease or a related disorder, 3) organizational policies. social workers and/or occupational health practitioners can play a key role to create a supportive workplace environment and change the organizational culture. 92 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 drolet et al. (2014). canada. focus groups and interviews this article explores the challenges faced by bilingual health and social services professionals in a canadian bilingual setting, as well as the strategies they use to overcome them. 21 organizations. 43 participants, (n=21 in the health field; n= 22 in social services). 08 focus groups (3-10 participants each) (n =4 from child and youth services; n=4 from services for older adults). a major barrier to access human/social services for linguistic minorities is the lack of representativity within the staff which in turn lead to non-tailored services. gates & sniatecki (2016). us. quantitative surveys this article investigates the organizational tolerance climate towards transgenders in human/social services employees. 23 participants completed the survey. organizational tolerance for transphobia (ott). although legal protection exist, discrimination and stigma are real. it may be not spoken, but discrimination and exclusion are surely felt. gates & blackwood (2019). us. quantitative surveys this article examines the relationship between workplace friendships and workplace empowerment in human/social services. 204 participants completed the survey. most of the participants were white (n¼181, 88.7%) and female (n¼166, 81.4%). 1/ opportunities and prevalence of workplace friendships. 2/ workplace empowerment. lesbian, gay, and bisexual (lgb) employees have opportunities to develop workplace friendships but have a significant lower level of workplace empowerment compared to their heterosexual counterparts. jang et al. (2017). us. quantitative surveys this article examines the impact of job demands (physical injury and racial/ethnic discrimination) and resources (self-confidence in job performance and recognition by supervisor/ organization/society) on home health workers’ employee outcomes (job satisfaction and turnover intent). 3,354 participants. 1) job satisfaction 2) turnover intent 1/ job demands 2/ job resources racial discrimination negatively impacts younger employees starting their careers. self-confidence (link with social support networks, training, mentoring) and recognition from the organization are success factors that have a positive impact on the performance outcomes. 93 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 kikulwe (2016). canada. focus groups and interviews this article examines the employment experiences of racialized social workers within public child welfare services in ontario. 21 participants (n=18 women, n=3 men) 15 interviews 1 focus group with 6 participants. varying racial backgrounds represented: filipino, west indian, african, jamaican, punjab and black canadian. racialized employees experience skepticism and devaluation, status incongruence, lack of decision making yet are considered as the “cultural experts.” these employees use conformity, collaboration, and conflict to deal with feelings of powerlessness and exclusion kim et al. (2019). us. quantitative surveys this article examines what specific characteristics of caseload affect caseworkers' workloads in the child welfare system and identifies specific individual and regional factors that influence both subjective and objective dimensions of workloads 1,244 caseworkers (n= 1027 female, n= 951 white). 1) caseworkers’ perception of manageability 2) overtime workload 1/ individual level variables 2/ regional level variables objective and subjective dimensions of workload were influenced by certain individual and regional-level variables. kosny & maceachen (2010). us. ethnography case study this article examines organizational practices or policies in the non-for-profit sector and identifies the ways in which the work performed in these workplaces is both gendered and invisible. 36 employees (n= 30 workers; n= 6 executives) in a female-dominated space, employees are increasingly asked to perform caring and emotional labor. each of these involves no pay nor compensation. as a result of this unpaid care work, employees are exposed to health and physical hazards and are left alone to carry this burden. leigh & melwani (2019). us. critical review this article explores the influence of broader societal events on employee experiences and behaviors at work. to maximize the potential of diversity and inclusion, leader’s compassion, inclusivity, and demography repartition within the organization can be facilitating factors that can drive positive outcomes out of mega-threat events. 94 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 mallinger et al. (2017). us. conceptual review the article explores the factors that can help promoting women’s progress in social work. women within social/human services organization face structural barriers. organizational support is needed to help them build resilience and to achieve positive outcomes such as pay equity, job advancement, and job satisfaction. martinez et al. (2016). us. quantitative surveys this article examines the relation between authentic identity expression and transgender employees' work-related attitudes and experiences. study 1: 173 participants were recruited and completed a survey. study 2: 199 participants were recruited. 1. job satisfaction 2. perceived p-o fit 3. perceived discrimination 1. extent of transition 2. action authenticity 3. relational authenticity authenticity (both with one's perception or others' perceptions of one's gender identity), is positively correlated with increased happiness, increased feelings of positive self-regard, and well-being within and outside of work. mccalla (2015). us. qualitative surveys this article examines organizational practices or policies that can help diminish the risk of heterosexism as it pertains to workplace bullying of lesbian, gay, bisexual, and transgendered (lgbt) workers 60 experts in social/human services (n= 15 human resources certification; n= 10 undergraduate degrees, n= 10 master’s degree, n= 2 doctorate degree; n=16 had 10+ years of human resources (hr) experience; n=5 had 5 10 years of hr experience; n=1 had less than 01 year of hr experience). organizations should develop policies and programs to address bullying in the workplace not just for lgbt minority and other potentially marginalized employees but also to protect all employees. quick & mcfadyen (2017). us. critical review the authors examine the existing literature on sexual harassment to highlight the hidden difficulties and biases in the definition, and to inform on what needs to be known about the evolving issue of sexual harassment within organizations. despite the improvement and success made in the domain of sexual harassment in the workplace, the problem has morphed and now affects both men and women, cisgender, and transgenders, heterosexual and lgbtq and is irrespective of race, gender, age, social status, or position within the organization. 95 ihtp, 1(1), 74-95, spring 2021 cc by-nc-nd 4.0 issn 2563-9269 sangganjana vanich & headley (2013). us & canada. scoping review this article reviews the professional standards for, and the competencies required in working with gender transitioning individuals. findings revealed that organizational support is needed to promote trans affirmative and trans-positive workplace environment, to help facilitate career decision-making during the gender transition process, and to advocate for social change through advocacy and raising community awareness and knowledge of the issue. weng (2014). us. qualitative case study this article explores the intent, experience, and the implementation of ethnic-specific programs, services, and agencies by their founders with a focus on asian communities. founders greatly influence the structure of the organization and the types of services offered. the authors also found that often, there are competing interests within the organization, which can become a barrier to receiving support and funding from mainstream agencies. yan (2008). us. semi structured interviews this article investigates the cultural tensions experienced by social workers within their organizations. 03 rounds of semi structured interviews were performed. round 1: 06 social workers round 2: 10 social workers round3: 14 social workers cultural tensions in social work practice are multifaceted. social workers are always the center of these tensions, especially visible minority social workers who encounter a very different type of cultural tension. abstract keywords funding source introduction literature review organizational culture within social/human services diversity and workplace employee health in social/human services methods search strategy inclusion criteria article selection results organizational culture within social/human services diversity and workplace employee health at the intersection of organizational culture and diversity discussion and study implications conclusion references ihtp, 2(2), 134-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 134 evidence-based practice and undergraduate nursing curriculum: trends and perspectives cristina lavareda baixinho1, óscar ferreira2, marcelo medeiros3, ellen synthia fernandes de oliveira4 1nursing school of lisbon; nursing research, innovation and development centre of lisbon (cidnur), lisbon; center for innovative care and health technology (citechcare), polytechnic of leiria, portugal; 2nursing school of lisbon; nursing research, innovation and development centre of lisbon, portugal; 3nursing school of the federal university of goiás, brazil; 4graduate program in collective health at the federal university of goiás, brazil corresponding author: c. l. baixinho (crbaixinho@esel.pt) abstract evidence-based practice is recognized as key to improving the quality of health care, increasing patient safety, controlling costs, and improving outcomes for people with healthcare and nursing needs. despite its advantages, the use of evidence in healthcare settings is not yet a standard of healthcare in the world. how can students learn and develop skills to use evidence-based-practice (ebp) in current nursing curriculum and how can researchers work with students and clinical professionals to increase ebp? changes in nursing education will require close collaboration with clinical contexts because learning about evidence takes place outside the classroom. keywords evidence; knowledge translation; learning; nursing; students background the evolution of health research has brought gains for the quality and safety of care provided to citizens, as well as improvement in indicators, such as morbidity, mortality rate and average life expectancy, and influence in health policies and professional education (ferreira, baixinho, medeiros & oliveira, 2021). health professionals are concerned that their approach is both effective and feasible, and that evidence and clinical decision making are timely, appropriate, and meaningful to people and communities (apóstolo, 2017). ensuring an evidence-based practice (ebp) throughout undergraduate nursing curriculum includes not only the quality of the research and its dissemination, but also the development of strategies to identify target audiences (such as clinicians, managers, policymakers, consumers, and others) and the design, implementation, and methods to organize and transfer knowledge that is understandable and usable in decision making (apóstolo, 2017; cardoso et al., 2020). however, experts note that the adoption of ebp is not yet a standard of healthcare in the world (melnyk et al., 2014). they warn that there is a gap between the appearance of research findings, practice, and health policy (oliver, innvar, lorenc, woodman, & thomas, 2014; apóstolo, 2017; cardoso et al., 2021; zanchetta et al., 2021) and the time it takes for changes to be introduced at the clinic level. on one hand, beliefs in the value of knowledge, the ability to implement best practices, the contexts that facilitate the implementation of evidence, and support are some of the factors that facilitate knowledge’s use in decision making (melnyk, gallagher-ford, long, & fineout-overholt, 2014; baixinho, presado, & ribeiro, 2019). on the other hand, there are difficulties in using knowledge. for example, using linear and unidirectional models to passively take information from researchers to users leads to the delayed introduction of research findings into the clinic, which makes innovation in healthcare ihtp, 2(2), 134-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 135 delivery difficult. in fact, some results are already obsolete by the time they reach the clinic floor (ferreira et al., 2019; ferreira et al., 2021). nursing knowledge has patterns obtained by different methods, especially qualitative methods. developments in this knowledge not only have the potential to introduce innovative technologies in care and to improve sensitive health outcomes, but also to allow person-centred care, individualizing interventions and integrating the preferences and expectations of both the patient and caregiver. however, to achieve this objective, research results must be accelerated in practice and in health policymaking. according to apóstolo (2017) successful health services in the future will be those that invest in the constant search for the information needed to guide practices, develop clinical leaders, and establish and maintain a culture of improvement in daily practice. although ebp and knowledge transfer to the clinic is recently gaining scholarly attention, researchers face complex challenges, from designing studies to the use of their results, which do not allow for their research’s adoption into praxis (cardoso et al., 2020; cardoso et al., 2021). when it comes to nursing students, 87 percent do not use research results in clinical practice, and they report that the non-use of the available evidence is related to insufficient knowledge about using research (ertug & önal, 2014). it is undeniable that the increased complexity of clinical contexts, which has become evident with the current sars-cov-2 pandemic, requires that both health care professionals and clients have access to current and adequate knowledge to solve healthillness processes. but the pandemic has also made it clear that health professionals’ level of scientific literacy may not be very high. for example, denialist health professionals have disseminated a lot of information through social and other media that was not supported by evidence, and many had negative attitudes toward scientifically informed responses to the pandemic. ebp and research are clear challenges for health professionals, but also for academics charged with educating future health professionals who require skills in research and correctly using research results in clinical practice. evidence-based practice has benefits for improving health care and the sustainability of health systems. and like other skills it needs to be learned. reflective discussion we aim to lead the reader to reflect on ebp and pedagogy based on a dialogue between the researchers’ concerns, experience, and the literature on the subject. our major motivation to conduct this reflection was the observation that ebp is a complex process that nursing students need to learn. other authors support the need for such reflection by presenting several obstacles to the introduction of evidence, such as: heterogeneous results, methodological and ethical issues, scientific rigour, project execution capacity, difficulties in research funding, relevance and usefulness in the face of health needs and policies, effectiveness in communication, dissemination, and lack of a scientific culture of collaborative work for the development of products that introduce results in different contexts (baixinho & costa, 2019; loura et al., 2022). the predominance of unidirectional models to introduce research results is also an issue of concern for student education because the delay in introducing results prevents students from observing the advantages of using evidence. this is a lost opportunity for undergraduate training. recent studies have reinforced that nurse are not well prepared to apply ebp (horntvedt et al., 2018) and that nursing students do not recognize the importance of this approach and lack the knowledge and skills to use it (patelarou, et al., 2020). this is a significant issue because health research has been very productive in recent years, but there are several gaps in the use of the recent and best evidence in clinical settings. our research showed that students have doubts and difficulties in knowledge transfer to clinical contexts. in this context, our reflection was guided by the following questions: a) how can students developed skills to use ebp? b) how can researchers work with students and clinical professionals to increase the use of ebp? these reflections are by the authors, who are portuguese and brazilian researchers. they suggest ihtp, 2(2), 134-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 136 research in nursing has increased substantially, but most often with a delay in introducing the results into the clinic. based on the reflections, several themes have been identified and will be addressed throughout the remainder of this paper. fostering a culture of undergraduate research around the globe there is a growing interest in health research and the involvement of undergraduate and postgraduate students. researchers recommend that future health professionals should be involved in research activities to nurture a research culture and spirit (einarsen & giske, 2019). the introduction of ebp has emerged in nursing curricula for the students’ academic development and to deepen the curriculum’s theoretical content (mena-tudela et al., 2018; loura et al., 2022). ebp in the curriculum promotes a theoretical-practical integration, mainly during clinical teaching, so that it has an impact on improving care and facilitates the development of a new health professional with scientific skills at different levels who can guide their professional practice based on research results (loura et al., 2022). given the importance of ebp to the profession, it becomes imperative to instill in students a sense of passion and enthusiasm for research and its everyday relevance to ensuring quality (hurlbut & elkins, 2018) and cost-effective health outcomes (watson, sahota, taylor, chen, & lilford, 2018). need to develop scientific competency the development of scientific competencies involves the acquisition and consolidation of a minimum set of attributes, knowledge, skills, and attitudes related to ebp that contributes to safer, higher-quality, and person-centred care (keib et al., 2017, loura et al., 2022). clinical teaching is key for improving students’ knowledge, attitudes, and skills in ebp. learning about research and the use of scientific knowledge is greater when it is integrated into such teaching (cardoso et al., 2020). however, it is difficult to achieve these objectives in traditional pedagogy when a teacher prepares lessons, then explains and demonstrates to students (loura et al., 2022), hoping that, in this way, students will be able to use research to produce safe clinical outcomes. nursing education should strengthen critical thinking skills and enhance students’ skills in the areas of analytical thinking, problem solving, and clinical reasoning (einarsen & giske, 2019). some authors advocate that the investment in ebp is not an investment in school furniture. the student must be an active participant in the research process to experience ebp at work (cardoso et al., 2020; ferreira et al., 2021). need to connect research to clinical context this “teaching to the desks” without connecting to the clinical contexts can increase students’ experience of a gap between theory and practice in clinical decision making (ferreira et al., 2021). therefore, some authors call for a paradigmatic break with this approach that leads to a void between the theoretical and practical worlds (baixinho & costa, 2019; ferreira et al., 2021). to this end, it is necessary to promote reflection on the practices—the “ways of doing” and the consequences of the activity—using research-based knowledge for decision making (baixinho, & costa, 2019). for some experts clinical teaching is key to improving students’ knowledge, attitudes, and skills in terms of scientific evidence (aglen, 2016; menatudela et al., 2018; loura et al., 2022). learning about ebp is most successful when it is integrated into clinical teaching, probably because students can experience the process and the impact on improving care in different practice settings (ferreira et al., 2021). creating ebp learning opportunities during clinical teaching can contribute to students being able to critically evaluate scientific literature and use scientific knowledge in clinical decision making (oh & yang, 2019; ommering, et al., 2019). therefore, research during undergraduate study is emerging to help students develop the skills and competencies needed for a healthcare professional today (long, bischoff, & aduddell, 2018; zuchowski, heyeres, & tsey, 2020). barriers to student engagement in evidence base practice despite the numerous advantages already described and the consensus in the literature about ihtp, 2(2), 134-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 137 the importance of nursing students’ involvement in research activities, we also found barriers to their involvement in ebp projects, such as the lack of knowledge and/or negative attitudes about research and students’ involvement in it; difficulties in the communication, dissemination, and appropriation of results by professionals; and lack of institutional and economic support necessary to conduct research (long, bischoff, & aduddell, 2018; loura et al., 2022). these difficulties are a challenge for any active articulation between academic institutions and clinics hoping to create opportunities for collaborative work that can benefit student development and simultaneously contribute to improved practices (althiga, mohidin, park, & tekian, 2017; cardoso et al., 2020; cardoso et al., 2021; ferreira et al., 2021). researchers can play a crucial role in stimulating students’ critical and reflective thinking by involving them in different research activities (ferreira et al., 2021). nursing students’ early exposure to different research activities can influence them as recent graduates to become drivers of change and help them incorporate evidence into their future clinical practice and be more proactive in the search for postgraduate training (slattery et al., 2016; ferreira et al., 2021). undergraduate research experience provides greater professional development, facilitates the understanding of more complex situations in people’s health/illness processes, allows the development of research skills, and prepares nurses for a broader scope of practice (einarsen & giske, 2019). a concerted international movement to support ebp education for nurses, all around the world, will benefit the care of populations in low-, middle-, and high-income countries. international associations of nurse educators should identify pedagogical strategies and activities that enable the development of competencies central to this movement. conclusion teachers and researchers need to rethink nursing students’ education models to promote learning and skills development that increase students’ knowledge about ebp and allow them to be in contact with and participate in research projects, ebp, and knowledge transfer to the clinic. we believe that the scientific literacy of professionals and the development of a culture of ebp in health institutions require a change in education and health policies with a direct impact on training. references aglen, b. (2016). pedagogical strategies to teach bachelor students evidence-based practice: a systematic review. nurse education today, 36, 255-263. althiga, h., mohidin, s., park, y.s., & tekian, (2017). a. preparing for practice: nursing intern and faculty perceptions on clinical experiences. medical teacher, 39(sup1), s55-s62. apóstolo, j. (2017). síntese da evidência no contexto da translação da ciência. coimbra, portugal: escola superior de enfermagem de coimbra (esenfc). baixinho, c.l., & costa, a.p. (2019). from the hiatus in the theory practice discourse to the clinic based on the uniqueness of knowledge. escola anna nery, 15;23(3):e20190141. baixinho, c. l., presado, m. h., & ribeiro, j. (2019). qualitative research and the transformation of public health. ciência & saúde coletiva, 24 (5),1583-1583. cardoso, m., baixinho, c.l., ferreira, ó., nascimento, p., pedrosa, r., & gonçalves, p. (2020). autopercepção dos estudantes sobre a participação em atividades extracurriculares de transferência de conhecimento: o exemplo da transição segura. new trends on qualitative research, 2(2020), 588-601. cardoso, m., baixinho, c.l., ferreira, ó., nascimento, p., pedrosa, r., & gonçalves, p. (2021). aprender prática baseada na evidência pelo envolvimento em atividades de investigação – autopercepção dos estudantes. cogitare enfermagem, 26, e79806. einarsen, k.a., & giske, t. (2019). nursing students’ longitudinal learning outcomes after participation in a research project in a hospital. international practice development journal, 9(1), 4 pages. ertug, n., & önal, h. (2014). undergraduate nursing students' research activities and utilization: a turkish sample. aquichan, 14(2), 251-260. ferreira, ó., baixinho c.l., medeiros m., & oliveira e. (2021). learning to use evidence in the nursing degree course: results of a focus https://www.fons.org/library/journal-about-ipdj https://www.fons.org/library/journal-about-ipdj ihtp, 2(2), 134-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 138 group. new trends on qualitative research, 8, 35-43. ferreira, e. m., lourenco, o. m., costa, p. v., pinto, s. c., gomes, c., oliveira, a. p, ferreira, ó., baixinho, c. l. (2019). active life: a project for a safe hospital-community transition after arthroplasty. revista brasileira de enfermagem, 72(1), 147-153. horntvedt, m. t., nordsteien, a., fermann, t., & severinsson, e. (2018). strategies for teaching evidence-based practice in nursing education: a thematic literature review. bmc medical education, 18(1), 172. hurlbut, j., & elkins, m. (2018). redesigning an undergraduate nursing research course using innovative teaching strategies. sm journal of nursing, 4(1), 1017. keib, c. n., cailor, s. m., kiersma, m. e., & chen, a. m. h. (2017). changes in nursing students’perceptions of research and evidence-based practice after completing a research course. nurse education today, 54, 37-43. long, a., bischoff, w. r., & aduddell, k. (2018). research prescription for undergraduate students: research mentoring in a small liberal arts university. journal of professional nursing, 35(3), 170-3. loura, d. s., bernardes, r. a., baixinho, c. l., henriques, h. r., félix, i. b., & guerreiro, m. p. (2022). nursing students’ learning from involvement in research projects: an integrative literature review. revista brasileira de enfermagem, 75(1), e20210053. mena-tudela, d., gonzález-chordá, v. m., cerveragasch, a., maciá-soler, m. l., orts-cortés, m. i. (2018). effectiveness of an evidence-based practice educational intervention with second-year nursing students. revista latino-americana de enfermagem, 26, e3026. melnyk, b., gallagher-ford, l., long, l., & fineoutoverholt, e. (2014). the establishment of evidence-based practice competencies for practicing registered nurses and advanced practice nurses in real-world clinical settings: proficiencies to improve healthcare quality, reliability, patient outcomes, and costs. worldviews on evidence-based nursing, 11(1), 5-15. oh, e. g., & yang, y. l. (2019). evidence-based nursing education for undergraduate students: a preliminary study. nurse education practice, 38, 45-51. oliver, k., innvar, s., lorenc, t., woodman, j., & thomas, j. (2014). a systematic review of barriers to and facilitators of the use of evidence by policymakers. bmc health services research, 14, 2. ommering, b. w. c., diepen, m. v., van blankenstein, f. m., jong, p. g. m., & dekker, f. w. (2019). twelve tips to offer a short authentic and experiential individual research opportunity to a large group of undergraduate students. medical teacher, 42(10), 1128-1133. patelarou, a. e., mechili, e. a., ruzafa-martinez, m., dolezel, j., gotlib, j., skela-savič, b., ramosmorcillo, a. j., finotto, s., jarosova, d., smodiš, m., mecugni, d., panczyk, m., & patelarou, e. (2020). educational interventions for teaching evidence-based practice to undergraduate nursing students: a scoping review. international journal of environmental research and public health, 17(17), 6351. slattery, m. j., logan, b. l., mudge, b., secore, k., von reyn, l. j., & maue, r. a. (2016). an undergraduate research fellowship program to prepare nursing students for future workforce roles. journal of professional nursing, 32(6), 412–420. watson, s. i., sahota, h., taylor, c. a., chen, y. f., & lilford, r. j. (2018). cost-effectiveness of health care service delivery interventions in low and middle income countries: a systematic review. global health research and policy, 3, 17. zanchetta, m., fredericks, s., mina, e. s., schwind, j., sidani, s., miranda, j., santos, w.s., bookeybassett, s., ehtesham, n., ziegler, e., fernandes, j. p., lee, k., bailey, a., espin, s., rose, d., & lee, c. (2021). sustaining undergraduate nursing students’ research education. escola anna nery, 25(3), e20200293. zuchowski, i., heyeres, m. & tsey, k. (2020). students in research placements as part of professional degrees: a systematic review. australian social work, 73(1), 4863. issn 2563-9269 288 mental health seeking behaviour of women university students: an intersectional analysis rodrick lal1, geoffrey reaume1, christo el morr2, nazilla khanlou1 1faculty of health, york university, toronto, ontario canada; 2school of health policy, york university, toronto, ontario canada corresponding author: r. lal (rodrickl@yorku.ca) abstract this research study explored the mental health help seeking behaviour of racialized and non-racialized women students at a large size public university located in ontario, canada. a sample consisting of 491 students participated in the cross-sectional survey. the majority (n = 413, 84.1%) were identified as canadian racialized women students. the remainder (n = 78, 15.9%) were canadian non-racialized women students. we contend that intersectionality, an emergent theoretical and methodological public health framework, provides a powerful tool for understanding the complex interlocking experiences of gender and racialization in the context of mental health. high levels of depression and anxiety symptoms were reported by both the racialized and non-racialized women students. the proportion of students with ces-d scores > 16 (indicating that may suffer from depression) was higher among the racialized women students (n = 265, 64.2%) than the non-racialized women students (n = 39, 50.0%). approximately, half of the racialized students (n = 202, 48.9%) had bas scores > 10 indicating that they may suffer from anxiety. about half (n = 38, 48.7%) of the non-racialized students also had bas scores > 10 indicating that they may suffer from anxiety. keywords age, gender roles, racialization, racism, stigmas, student’s mental health background there are multiple social and structural issues that create mental health problems, such as anxiety, depression and stress in a student’s life when engaging in the university environment. university life is often filled with excitement and new experiences for students. it is also the time of life when a developmental transition from youth to adulthood occurs, which some students experience as a sense of loss when separating from communities, family and friends. a substantial volume of research has demonstrated that gender constructed disparities contribute meaningfully to the greater prevalence of depression and anxiety among young women when compared to young men, (canadian institute of health research, 2016; iwamoto, lui & mccoy, 2011; american psychiatric association, 2009; world health organization (who), 2018). for instance, the lower self esteem of young women in comparison to young men in similar age groups, and their anxiety over their ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 body-image has established an elevated prevalence of depression and of eating disorders in young women in comparison to young men, (canadian institute of health research, 2016; iwamoto, et al, 2011; american psychiatric association, 2009; who, 2020). saliently, the sentiment of a lack of power and control over one’s life especially in racialized women correlates towards with depression. socially determined gender norms, roles and responsibilities places both racialized and non-racialized women, far more frequently than men, in situations where they have little control over important decisions concerning their lives (iwamoto, lui, & mccoy, 2011; american psychiatric association, 2009; who, 2018). the mental health impact of these inequities may be greater on immigrant and second-generation racialized students due to the discrimination and racism they experience (arday, 2002). university is an environment in which mental health problems issn 2563-9269 289 (costello, foley, & angold, 2006), including depression, suicide, and substance abuse, combined with stress related to academic performance are likely to occur. some of the factors that contribute to mental health problems in universities intersects with: structural problems of confronting racism against racialized students; structural violence and public stigma; inadequate university counselling staff and limited hours of operation; the social determinants of living conditions; financial issues; food scarcity; personal career decision-making; developing independence; alcohol misuse; and personal academic demands (costello, foley, & angold, 2006; watson, & bar 2006; carpenter-song, 2010; corrigan, watson, & barr, 2006). among those who experience mental health problems, research illustrates that students from racialized backgrounds are unlikely to seek help either from university counselling centres or mental health resources (carpenter-song, 2010; corrigan, et al., 2006). the hindrance of depression, anxiety and stress are further exacerbated by the demands to acculturate to the dominant canadian society for many racialized women students, particularly for recent immigrants. both in the dominant non-racialized canadian society and in many racialized communities, different cultural values and understandings of emotional independence and women’s roles may lead these students to experience additional difficulties as they try to navigate the transition to life at university (harper, & harris, 2010). few studies have fully explored the intersections of gender, socio-economic status, racialization and racism, ethnicity, professional behaviour and age as they interconnect to influence the experiences of racialized and nonracialized populations of women. racialized identities are identified as those groups of people that have been socially and politically created as ‘‘racially’’ distinct. in addition, “they have prominent cultural elements, but they are mostly a manifestation of unequal power between groups” (baum, 2002, p. 11). consequently, racialized identities are historically and contextually specific differentiated by malleability, flexibility and situationally (baum, 2002; arday, 2002; galabuzi, 2018). more importantly, racialized identities are shaped by power relations (crenshaw, 1989a, 1991b, 2017c; davis, 1981; khanlou, 2010b). in contrast, european settler societies/immigrants are positioned as non-racialized settler societies. ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 in this paper, we present data from on online survey of canadian university students with a focus on the intersections of female gender, racialization and mental health help-seeking behaviour. in the survey we asked students questions related to their help seeking behaviour, experiences of accessing help, stigma and issues related to race and acculturation. we argue that intersectionality, an emergent theoretical and methodological public health framework, provides a powerful tool for understanding these complex interlocking experiences in the context of mental health (morrow & halinka-malcoe, 2017; rossiter & morrow, 2011; gorman, 2013; tam, 2013; cole, 2009). conceivably, one of the largest disparities in the literature are studies that address the intersections between gender, racialization, stigma and student help seeking behaviour for mental health supports. intersecting factors influencing women’s mental health help seeking behaviour of racialized and non-racialized students there are numerous factors that act as barriers contributing to the under-utilization of mental health supports among women, especially racialized women students. at the structural level systemic racism is the overarching barrier, which then plays out at the community, institutional and personal level (morrow, et al., 2017). further, racism and acculturation, expertise of professionals, stigma, race-related stress, gender roles, age, cultural and religious beliefs also play a role in help-seeking for racialized women students. for non-racialized students’ gender and age may act as significant barriers to help-seeking behaviour. gender, race & culture racialized women comprise a large, heterogeneous group, varying by language, geographic location and their post-migration experiences. however, among these groups, family needs and traditions are often considered more important than personal needs; when a woman puts her personal needs ahead of those of her family, her behaviour may be considered selfish and "westernized" (das, & kemp, 1997; chan, 2013). the different, yet valued structure of family and women’s roles in racialized cultures, is important to understand; many women strive to maintain these values after migration (das et al., 1997; chan, 2013). issn 2563-9269 290 as a result, racialized women are at the intersection of multiple stigmas with respect to helpseeking behaviour. not only are their mental health issues closely connected with the cultural stigma of inadequate womanhood or motherhood, but they also generally decline to seek help from either formal or informal sources (komiya, good, & sherrod, 2000; chowdhury, sanyal, bhattacharya, dutta, banerjee, & weiss, 2001; ting, & hwang, 2009; & paniaguan, 2013). as a result, help-seeking behaviour is mediated by both racialization and gender. this combination can prevent both racialized and non racialized women from seeking help for mental health problems and lead to under-utilization of services. for racialized students, family care and support from religious beliefs are perceived as more important than professional mental help to maintain mental wellbeing (chan, & hayashi, 2010; chong, verma, vaingankar, chan, wong, & heng, 2007; chowdhury, et al., 2001). age several scholars (rickwood, deane, wilson, & ciarrochi, 2005), found in younger women age disparities in help-seeking behaviour for mental health concerns, especially in young people between the ages of (18-25). women in the age range between (18-25), are at the highest risk of having mental health issues and yet had low help-seeking rates (rickwood, deane, & wilson, 2007). this suggests a negative link between age and help-seeking behaviour for mental health issues informed by different attitudes towards mental health. furthermore, for young adults in the age range of (18-25), the fear of breaches of confidentiality and lack of trust may relate to the fear of public stigma (rickwood, et al, 2007). this may create embarrassment, shame and loss of face in front of peers and friends (barker et al., 2005). evidence confirms that positive past experiences, social support and encouragement from family members, and family doctors are often the preferred sources of help over mental health professionals for this age group (rickwood, et al, 2007; zachrisson, rodje, & mykletun, 2006). systemic racism ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 institutionalized racism is defined as, “differential access to the goods, services, and opportunities of society by race” (jones, 2000, p. 1212). institutionalized racism becomes structural when it is normalized and codified into institutions. jones (2000), developed a framework for understanding racism at three levels: institutionalized, personally mediated, and internalized. the barriers related to systemic racism explored below are the most relevant to the current study and also those most often discussed in the literature (gary, yarandi & scruggs, 2003; gary, 2005; paradies et al., 2015; sam & barry, 2010; hwang, & ting, 2008; mikolajczyk, bredehorst, kheilalfat, maler, & maxwell, 2007; potochnick & perreira, 2010). i) racism and acculturation acculturation encompasses how people adjust to a new culture, language and environment and has been linked to health and mental health problems due to structural racism (berry, 2008a; khanlou, koh, & mill, 2008). balls organista, marin, & chun, (2010, p. 105), define acculturation stress as, “a dynamic and multidimensional process of adaptation that occurs when distinct cultures come into sustained contact.” people experience different degrees and instances of integration with the mainstream culture and maintenance with the heritage culture contingent upon individual, group, and environmental factors. for university-aged, racialized students, researchers have noted additional difficulties (sam, et al., 2010; hwang, et al., 2008; mikolajczyk, et al., 2007). these difficulties vary depending on whether the racialized student is canadian-born or a recent immigrant. for canadian-born racialized students, the issues include intergenerational family conflict and handling discrimination associated with racialized status (khanlou, 2003a). whereas racialized immigrants often experience and face: identity confusion; struggle adapting to a different educational and political system; and adjusting to new social norms and coping with feelings of isolation and disconnection (potochnick & perreira, 2010; javier, lahlff, ferrer, & huffman, 2010). ii) stigma and racism-related stress mental health stigma intersects with experiences of racialization and culture. a distinction exists between stigma by virtue of being for a racialized issn 2563-9269 291 group and stigma from having mental health issues; both create a barrier to racialized students from seeking help. once women, especially racialized women have been stigmatized through mental illness labels, the foundation has been established for them to feel devalued and excluded from mainstream society. the stigma of receiving a psychiatric “label’’ may act as a stressor, impairing psychiatric symptoms or impeding recovery (ting & hwang, 2010). evidence suggests that high levels of stigma associated with negative attitudes predict low use of mental health services for racialized groups. several surveys have revealed that people with significantly high levels of self-stigma are less likely to seek professional services than those with significantly low levels of self-stigma (vogel et al., 2006). iii) expertise of professionals racist beliefs and stereotyping in the mental health professions (i.e., counsellors, psychology, psychiatry) are regularly assumed to be persuasive determining factors in intake, assessment and diagnosis and misdiagnosis of mental health concerns. (bui, & takeuchi, 1992). unfortunately, because of these problematic briers racialized groups are frequently misdiagnosed with mental health problems (bui, et al., 1992). in summary the construct of health and mental health is not merely the result of biological factors but is also influenced by social and structural factors. unlike biomedical and socio-psychological models/theories, intersectionality advocates racialized groups confront (structural) barriers within the broader political, economic, historical, and social systems due to existing intersecting structural inequalities in canadian society. further (javier, et., 2010; iwamoto, et al., 2011) emphasize that the internal variations within communities based on female gender, class, age, ability, and sexuality are salient determinants of healthcare and could deter racialized groups in help-seeking. these researchers’ correlate the healthcare behaviour of people especially racialized groups as a power relation comprised of multifaceted intersectional power relations and inequitable social relationships. methods the concept of intersectionality was formulated by kimberlé crenshaw in the context of legal studies and ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 the development of critical race theory (crenshaw, 1989a; 1991b; 2017c). however, the concepts underlying intersectionality have a long activist and intellectual history. intersectionality has its roots in the activism and scholarship of afro-american and indigenous feminists in the us and the global south (davis, 1981; mohanty, russo & torries, 1991; donadey, 2002; morrow, halinka-malcoe, 2017). intersectionality is increasingly being adopted as analytic tool for research and activism. hill, & bilge, (2016) describe intersectionality as: when it comes to social inequality, people’s lives and the organization of power in a given society are better understood as being shaped not by a single axis of social division, be it race or gender or class, but by many axes that work together and influence each other. intersectionality as an analytic tool gives people better access to the complexity of the world and of themselves (pg. 2). increasingly, intersectionality is being attentive in the context of mental health research (morrow, et al., 2017; gorman, 2013; tam; 2013; cole, 2009; rossiter, et al., 2011) and is being acclaimed for its contributions to understanding the complex interactions between social positioning (race, class, ethnicity, gender) and what these interactions tell us about power relations in mental health (morrow, et al., 2017). while intersectionality is customarily assumed to be principally used in qualitative research (cole, 2009); it is also increasingly used in quantitative studies (parent, hammer, bradstreet, schwartz & jobe, 2018). indeed, sizeable group figures are distinctively suited to quantitative intersectional surveys which allows for analysis of identities and individual diversities features (parent, et al., 2018; scott, & siltanen, 2017). in this quantitative study, intersections were captured in the data through relationships amid groups (cole, 2009). sample of the student population the target population for this study was specifically racialized women, and non-racialized women students enrolled at a large size public university located in ontario, canada. while the focus in this study was on racialized women students, all students were invited to participate to compare and contrast for deeper understanding. participations were not restricted by any other demographic variable, such as age, gender-sex, marital status, socio-economic issn 2563-9269 292 status, education level, ethnic background, disability or history of mental illness. participants were recruited through presentations at university classes in various faculties and departments. to increase the response rate, the researcher attended several classes where, with the collaboration of the professor, the students completed the surveys in class. participants who clicked the link were led externally to survey monkey, an electronic survey website, to complete their responses to the instruments. ethics approval was granted by the university ethics board. socio-demographic survey the socio-demographic survey elicited information about the socio-demographic characteristics of the students, including gender-sex, age, relationship status, citizenship, racial/ethnic identity, student status, living situation, use of university counselling services, use of online mental health/app information system, and previous diagnosis. the data analysis was conducted utilizing spss vs. 24.0 and the methods described by field (2013). table 1 lists the definitions of the variables used to test the research questions. it also lists the continuous (interval level) variables measured with likert-scales, coded in spss using variable names with four letters. the socio-demographic and contextual characteristics of the respondents were summarized by frequency distributions (counts and percentages of each category). the continuous (interval level) variables were summarized using descriptive statistics (minimum, maximum, mean, median, and standard deviation). the mean scores ± 95% confidence intervals (ci) of the ten variables were computed to compare the mean scores between different groups of students. a statistically significant difference (p < .05) between two mean scores was inferred if their 95% ci did not overlap (fidler & loftus, 2009; knezevic, 2008). results descriptive analysis: the intersectionality of racialized and non-racialized women student’s mental health seeking behaviour ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 the socio-demographic characteristics of 491 respondents (counts and percentages in each category) classified by racial/ethnic group (n = 78, 15.9% non-racialized; n = 413, 84.1% racialized). the division between non-racialized and racialized women students used in this study encompassed a very wide range of ethnic/racial diversity. this wide diversity is represented in figure 1 by a pie diagram which illustrates the racial/ethnic diversity of the sample (n = 491). a total of 570 students participated in the research, 79 male student’s data were deleted from the research. the women students ranged widely in age from 18 to 65 years. the predominant age groups were 18 to 20 years, and 21 to 30 years, collectively representing 82.9% of the non-racialized women students, and 92.3% of the racialized women students. the proportion of canadian citizens by birth was higher in the non-racialized students (82.1%) compared to the racialized students (59.3%). the multiple regression analysis from the multiple regression analysis (table 2) high levels of depression and anxiety symptoms were reported by both the racialized and non-racialized women students. the proportion of students with ces-d scores > 16 (indicating that they may suffer from depression) was higher among the racialized students (n = 265, 64.2%) than the non-racialized students (n = 39, 50.0%). about half of the racialized students (n = 202, 48.9%) had bas scores > 10 indicating that they may suffer from anxiety. about half (n = 38, 48.7%) of the non-racialized students also had bas scores > 10 indicating that they may suffer from anxiety. the multiple regression analysis utilized to predict stigma had strong practical significance (r2 = .070). identification with heritage culture, gender and/or sex, and race related stress were significant predictors of stigma among the racialized women students. when identification with heritage culture increased by 1, the stigma score increased (β = .216). further, the regression statistics supported the question that identification with mainstream culture, ethnic identity, and race related stress were not significant predictors of depression, anxiety, stigmatization, attitudes toward seeking help, or intention to seek help among the non-racialized issn 2563-9269 293 women students. thus, the mean score for attitudes toward seeking help was significantly higher among the nonracialized women students (m = 28.56) than the racialized women students (m = 26.63). saliently, the mean score for race related stress was significantly higher among the racialized women students (m = 5.95) than among the non-racialized women students (m = 2.61). discussion this research examined the factors associated with the attitudes and beliefs concerning racialized and non-racialized women students’ mental health helpseeking behaviour. the study focused on racialized women university students because insufficient research has been undertaken in a large size public university in the province of ontario canada, to highlight the concerns of racialized students who do not seek mental health services. help-seeking behaviours are very complex for racialized women students who experience multiple forms of discrimination based on gender/sex, income, immigration status, stigma, race, ethnicity, class, living situation and age. the results of the descriptive data analysis revealed that the proportions of students with ces-d scores > 16 (indicating that they suffered from clinical depression), was higher racialized women compared to the non-racialized women. the regression analysis indicated that identification with heritage culture and race related stress were statistically significant predictors of depression symptoms among the racialized women students. however, for the non-racialized women students, mainstream acculturation, ethnic identity, and race-related stressors were not statistically significant predictors of depression due to their social and cultural privileges belonging to the dominant non-racialized canadian society. these findings are consistent with other surveys concluding that racialized women students are significantly more likely to report depressive symptoms than non-racialized students (morgan et al, 2006; walsemann, et al., 2011). the empirical evidence indicates that depression is correlated with many other variables of interest to this study, including stigmatization related to mental health (link et al., 2001; corrigan, 2007). the reasons for the high incidence of depression among racialized women students may include racism process stigmatization ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 associated with acculturation (link et al., 2001; walsemann, et al., 2011); experience of racial discrimination (borges et al., 2011; joseph, 2015); and gender role conflict (good & wood, 1995). the descriptive analysis revealed that the mean scores for “attitudes toward seeking help,” “intention to seek help,” “identification with mainstream culture,” and “race related stress” were meaningfully lower in the racialized women students than in the non-racialized women students. furthermore, the mean score for “stigma” was significantly higher in the racialized women students than in the non-racialized women students. regression analysis indicated that a high level of stigma was a significant predictor of lower attitudes towards help seeking and lower intentions towards seeking mental health counseling amongst racialized women students. similarly, rao, feinglass, and corrigan (2007), found that racialized students at a community college in usa exhibited greater stigma than non-racialized students. these findings are consistent with several previous studies concluding that stigmatization related to mental health is an important predisposing characteristic acting as a barrier to the use of mental health services by racialized students (gary, 2005; gary et al., 2003; ting & hwang, 2010; walsemann, et al., 2011). further, this study correlated the intersection between gender and race plays an important role in help seeking behaviour. mental health actions are socially structured behaviours, practiced in the same way as other social and cultural activities (courtenay, 2000a). as a result, the “doing of health” is the doing of femininity gender/sex role stereotype fulfilment (courtenay, 2000a). the “doing” of help-seeking is consistent with the norms of traditional femininity and thus reflect the gender/sex role stereotypes of a given time and place (courtenay, 2000a). while racialized women also seek help less frequently than non-racialized women, they seek mental help more frequently than racialized men (american psychiatric association, 2009; courtenay, 2000a). however, racialized women’s students mental help-seeking involved informal supports from friends and family members. these connections are often vital for racialized women because it provides much needed non-professional support and creates bonding among them. this could be emphasized as being a very supportive behaviour from cultural safety perspective. issn 2563-9269 294 thus, nonracialized women students, the situation is somewhat healthier, since dominant femininity in canadian society encourages mental help-seeking, but racialized women experience: multiple stigmas, racism, and discomfort with lack of cultural safety with the health care system often prevents help-seeking from professionals. the concept of cultural safety is particularly relevant to mental health professionals as it seeks to promote cultural integrity and the promotion of social justice, equity and respect. it dictates that mental health professionals should be aware of a person’s cultural background and the impact of colonialism and racism on mental health and strive to create an environment that is safe and supportive (mcgough et al, 2018). age evolves to an important variable in mental help-seeking behaviour. the predominant age group of the students at who participated in the survey was 18 to 30 years, collectively representing 82.9% of the non-racialized women students, and 92.3% of the racialized women students. the older students (age 26 to 65 years) in the racialized women students tended to have higher scores for “attitudes toward seeking help” than both racialized and non-racialized women students (age 18 to 25 years). previous studies have concluded that students in the ages of 18-25 years represent at-risk for all groups due to high risk of mental health issues with associated with low help-seeking rates (rickwood, et al, 2000a). there may be links between age and help-seeking behavior for mental health issues informed by variants in attitudes towards mental health issues between different cultures and generations. research on racialized groups (paniagua & yamada, 2013; wang, et al, 2007; rao, et al, 2007) has indicated that family and friends strongly influence help-seeking. as a result, family and friends were also important and influenced participants to engage in mental help-seeking behaviour. in the survey, the mean scores for attitudes toward seeking help were significantly higher among the students who lived with their family, compared with the students who lived off or on campus. this finding was surprising as we assumed that women students living on campus might be more likely to seek mental help, because of lack of family influence and availability of services. partners and friends were the associates from whom both racialized and non-racialized women ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 students were most likely to seek mental help or advice if they were experiencing mental health issues. mental health professionals, relatives/family members, and doctors/gps were less likely to be consulted. professors/academic advisors, phone helplines, ministers or religious leaders, and chat rooms were the least likely sources of help or advice. the university counselling centre did not have a significant impact on either non-racialized or racialized women students. these findings support the suggestion that social support from friends and family members may be important to lay the foundation for mental help seeking behaviour. several researchers (vogel et al., 2007; 2001; gulliver et al., 2010; gulliver et al., 2012) postulated that most people including racialized and non-racialized women students who engaged in therapy for mental health care are more acceptable when a designate (e.g., parent or partner) advocates for help seeking. therefore, social support and positive reinforcement appears to be a facilitator of mental help seeking behaviour for women students. further, this survey revealed that previous diagnosis was a statistically significant predictor of “attitudes toward seeking help”. this finding is consistent with other studies concluding that previous experiences may increase the potency to influence both non-racialized and racialized students’ decision to seek help for mental health issues (surgenor, 1985; jorm et al., 1997). unfortunately, racialized women students seek less help from mental health professionals. this could also be a positive behaviour, given the nature of the deplorable history of how racialized people generally have been mentally misdiagnosed by mental health professionals and mistreated within the mental health system (jorm et al., 1997). therefore, it was assumed in this study that social and electronic mediums would be utilized by both groups of students especially racialized students. regrettably, there was no significant association between the use of the online information system and racialized and non-racialized women students implications of the results significant positive correlations were found between attitudes toward seeking help, informal help seeking, and intention to seek help. these three variables were all negatively correlated with stigma. issn 2563-9269 295 moreover, the results of the correlation analysis conducted using the data collected in this survey suggested that what the women students believed other people might think about seeking professional help for mental health issues, associated with stereotypical societal norms and values. (i.e., their level of stigmatization) may reduce the levels of the students’ intentions to seek help as well as the levels of their help seeking behaviour. these findings were consistent with several previous studies concluding that stigmatization is an important predisposing characteristic acting as a barrier to the use of health/mental services by racialized university students (gary, 2005; gary et al., 2003; rao et al., 2007; ting & hwang, 2010). policy architects in the health and mental health environments have sought to develop explanatory models and theories to understand help-seeking behaviour. this knowledge is meant to assist health professionals, policy makers, researchers, and lay persons in understanding how and when a racialized woman student utilizes health care for physical and mental health needs. a significant amount of research has highlighted the prevalence rates of mental health problems in non-racialized and racialized students. however, utilization of mental health services varies according to power relations based on positionality related to race and ethnicity with research suggesting that racialized women students and racialized population under-utilize mental health services (abekim et al., 2002). further, most of these help seeking theories and models reflect power relationships, western values, the experiences of the dominant nonracialized population, and are based on the principles of individuality. these help-seeking theories lack a structural analysis that considers the intersectionality of mental health. university administrations, student organizations, faculty, and counselling faculty can develop in-class cultural safety educational programs concerning mental health issues for students. this action can cultivate an environment that may reduce the intersections of stigma, stress, anxiety, and depression, and increase help-seeking behaviour. these courses would use an intersectionality lens and demonstrate a commitment to gender equity to engage students to become ambassadors regarding mental health problems to the wider communities, including their families. additionally, working in concert in the classroom setting may reduce ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 discrimination and racism between the non-racialized and racialized student groups. operationalizing these recommendations requires a combination of coherent policy, multi-sectoral solutions with strong leadership by the counselling faculty, and community level action. action on the social determinants can advance student’s physical and mental health resources and provide a culturally safe university environment. the combination of improvements in structural factors, financial resources, daily living conditions, and social determinants can effect emancipation, freedom, and ultimately, mental health and equity. limitations there is the possibility of cultural response bias, referring to the peculiar cultural communication styles of many respondents, particularly of racialized women, to provide consistently biased answer patterns to questionnaires concerning health and social issues (minkov, 2010; smith, 2004). some respondents both racialized and non-racialized women students may consistently agree with all of the items (acquiescence response bias), or alternatively, they may consistently answer at the extreme end of each item scale (extremity response bias) irrespective of what they believe is the true answer. missing values and response bias may, therefore, limit the validity and reliability of the results of this study. some of the instruments utilized in this research may not be in-link with the values and characteristics of the diverse racialized groups in this study. as a result, it is essential to create an open environment in order to redirect university policies based on equity mental health policies toward designing strategies that will help to improve psychological counseling and other social/religious and healthcare services for racialized and nonracialized women students. conclusion in conclusion, this study uncovered that a high proportion of the racialized and to a lesser extend non-racialized women students in a large size public university in the province of ontario canada reported, that they suffered from mental problems including depression, anxiety, and race related stress. the intersectionality of depression, anxiety, stigma, race related stress and stigmatization does hinder mental help-seeking behaviour. a higher level of stigma was ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 issn 2563-9269 296 also a predictor of negative attitudes and lower intentions towards seeking mental health counseling amongst the racialized women students. unfortunately, due to structural problems of racism and acculturation, stigma is characteristic among racialized women students. fortunately, family and friends heightened the foundation for good mental health and help-seeking behaviour for racialized and nonracialized women students. mental help-seeking behaviour is an important issue to address, in view of the enormous growth of immigrant students and minority groups who become racialized in canada. future quantitative and qualitative research should expand on how the intersections of stigma are significant mediators of the relationship between acculturation and the attitudes of the students towards seeking mental health treatment, and how this relationship is translated into practice. the integration of quantitative and qualitative data across several studies may also help to reveal the complex nature of how gender and race impact mental health help seeking behaviour. notwithstanding the limitations of this exploratory research, this is one of the few studies known to address the mental health problems and needs of racialized and non-racialized women student populations in ontario, canada. as a result, the practical implications of this study may serve to inform university governance to develop new policies on developing in class programs on mental health and equity. in addition, the administration and faculty need to design cultural/gender safety counselling programs and educate mental healthcare professionals / counsellors to improve their services and address the intersectional needs of racialized students in universities across canada, and postsecondary institutions worldwide. references abe-kim, j., takeuchi, d. t., hong, s., zane, n., sue, s., spencer, m. s. alegría, m. (2007). use of mental health–related services among immigrant and us-born asian americans: results from the national latino and asian american study. american journal of public health, 97(1), 91-98. adams t., & moore, m. (2007). high-risk health and credit behaviour among 18 to 25-year-old college students. journal of american college health, 56, 101–108. addis, m. e. & cohane, g. h. (2005). social scientific paradigms of masculinity and their implications for research and practice in men's mental health. journal of clinical psychology, 61, 633-647. aegisdottir, s., o'heron, m., p., hartong, j. m., haynes, s. a., & linville, m. k. (2011). enhancing attitudes and reducing fears about mental health counseling: an analogue study. journal of american college health association. american college health association, (2016). american college health associationnational college health assessment ii: ontario canada reference group executive summary spring. hanover, md. american psychiatric association. (2009). women’s mental health issue paper. retrieved from http://www.psychiatry.org/file%20library/ practice/diversity/diversity%20 resources/womens-mental-health-issue.pdf arday j. (2002). fighting the tide: understanding the difficulties facing black, asian and minority ethnic (bame) doctoral students’ pursuing a career in academic. educational philosophy and theory: pages 1-8. auerbach, r. p. et al (2018). the w.h.o. world mental health surveys international college project: prevalence and distribution of mental disorders. journal of abnormal psychology, 4(13). augsberger, a., yeung, a., dougher, m., & hahm, h. c. (2015). factors influencing the underutilization of mental health services among asian american women with a history of depression and suicide. bmc health services research, 15(1), 542. balls organista, p., marín, g., & chun, k.m. (2010). the psychology of ethnic groups in the united states. thousand oaks, ca: sage. barney, l. j., griffiths, k. m., jorm, a. f., & christensen, h. (2006). stigma about depression and its impact on help-seeking intentions. australian and new zealand journal of psychiatry, 40, 51-54. bathje, g. j., & pryor, j. b. (2011). the relationships of public and self-stigma to seeking mental ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 issn 2563-9269 297 health services. journal of mental health counseling, 33, 161–177. baum, f. (2002). the new public health (2nd ed.). melbourne, oxford university press. berger, j. m., levant, r. f., mcmillan, k. k., kelleher, w., & sellers, a. (2005). impact of gender role conflict, traditional masculinity ideology, alexithymia, and age on men’s attitudes toward psychological help seeking. psychology of men and masculinity, 6, 73–78. berry, j. w. (2005a). acculturation: living successfully in two cultures. international journal of intercultural relations, 29(6), 697-712. berry, j.w. (2006b). acculturation: a conceptual overview. in m.h. bornstein & l.r. cote (eds.), acculturation and parent-child relationships: measurement and development. mahwah: erlbaum. broman, c.l., mavaddat, r. & hsu, s. (2000). the experience and consequences of perceived racial discrimination: a study of african americans. journal of black psychology, 26, 165-1 80. brown, t.n. (2003). crt speaks to the sociology of mental health: mental health problems produced by racial stratification. journal of health and social behaviour, 44, 292–301. blanco, c. okuda m, & wright c. (2008). mental health of college students and their noncollege-attending peers: results from the national epidemiologic study on alcohol and related conditions. archives of general psychiatry, 65(12), 1429–1437. borges, g., azrael, d, almeida, j., johnson, renee, m., molnar, b. e., hemenway, d., & miller, m. (2011). immigration, suicidal ideation and deliberate self-injury in the boston youth survey 2006. suicide & life threatening behaviour, 41, 193-202. bowleg, l. (2008) when black + lesbian + woman ≠ black lesbian woman: the methodological challenges of qualitative
and quantitative intersectionality research. sex roles, 59, 312-325. bryant-davis, t., & ocamo, c. (2005). racist incidentbased trauma. counseling psychologist, 33,479-512. bui, k., & takeuchi, (1992). ethnic minority adolescents and the use of community mental health care services. american journal of community psychology 20:403417. cacuss (canadian association of college & university student services) and canadian mental health association (2013). post-secondary student mental health: guide to a systemic approach. vancouver, bc. canadian mental health commission (2017-18). mental health commission of canada, it gives us great pleasure to place before you changing directions, changing lives: the mental health strategy for canada. canadian mental health commission (2016). making the case for investing in mental health in canada. cape, p. (2005). questionnaire length, fatigue effects and response quality reviewed. survey sampling international. carpenter-song, e. (2010). ethno-cultural variations in the experience and meaning of mental illness and treatment: implications for access and utilization. transcultural psychiatry, 47(2): 224-51. cash, t. f., begley, p. j., mccown, d. a., & weise, b. c. (1975). when counselors are heard but not seen: initial impact of physical attractiveness. journal of counseling psychology, 22(4), 273-279. cepeda-benito, a., & short, p. (1998). selfconcealment, avoidance of psychological services, and perceived likelihood of seeking professional help. journal of counselling psychology, 45, 58–64. chan, k.b. (2013). international handbook of chinese families. new york: springer. chan, r. k. h., & hayashi, k. (2010). gender roles and help-seeking behaviour: promoting professional help among japanese men. journal of social work, 10(3), 243-262. cha, m. et al. (2008). predictors of intention to practice safer sex among korean college students. archives of sexual behavior, 37(4):641–651. chang, c., wu, t. h., chen, c.-y., wang, j. d., & lin, c. y. (2014). psychometric evaluation of the internalized stigma of mental illness scale for patients with mental illnesses: measurement invariance across time. plos one, 9(6), e98767. chiu, m. y. l., yang, x., wong, h. t., & li, j. h. (2015). the mediating effect of affective stigma between face concern and general mental ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 issn 2563-9269 298 health – the case of chinese caregivers of children with intellectual disability. research in developmental disabilities, 36, 437-446. chong, s. a., verma, s., vaingankar, j. a., chan, y. h., wong, l. y., & heng, b. h. (2007). perception of the public towards the mentally ill in a developed asian country. social psychiatry and psychiatric epidemiology, 42(9), 734739. chowdhury, a. n., sanyal, d., bhattacharya, a., dutta, s. k., de, r., banerjee, s. weiss, m. g. (2001). prominence of symptoms and level of stigma among depressed patients in calcutta. journal of the indian medical association, 99(1), 20-23. cho, y., & haslam, n. (2010). suicidal ideation and distress among immigrant adolescents: the role of acculturation, life stress, and social support. journal of youth and adolescence, 39, 370-379. cole, e. (2009) intersectionality and research in psychology. american psychologist, 64(3), 170-180. corrigan, p. (2004). how stigma interferes with mental health care. american psychologist, 59, 614–624. corrigan, p. w., & wassel, a. (2008). understanding and influencing the stigma of mental illness. journal of psychosocial nursing and mental health services, 46, 42-48. corrigan, p. w., watson, a. c., warpinski, a. c., & gracia, g. (2004). stigmatizing attitudes about mental illness and allocation of resources to mental health services. community mental health journal, 40, 297– 307. corrigan, p. w., watson, a. c., & barr, l. (2006). the self-stigma of mental illness: implications for self-esteem and self-efficacy. journal of social and clinical psychology, 25, 875-884. courtenay, w. h. (2000a). engendering health: a social constructionist examination of men’s health beliefs and behaviours. psychology of men and masculinity, 1, 4 –15. courtenay, w. h. (2000b). constructions of masculinity and their influence on men’s well-being: a theory of gender and health. social science and medicine, 50(10), 1385– 1401. costello e. j, foley, d. l., angold, a., (2006). 10-year research update review: the epidemiology of child and adolescent psychiatric disorders: ii. developmental epidemiology. journal of american academy of child and adolescent psychiatry; 45, 8–25. crenshaw, k. (1989a). demarginalizing the intersection of race and sex: black feminist critique of antidiscrimination doctrine, feminist theory and antiracist politics. university of chicago legal forum, 1989(8), 139-67. crenshaw, k. (1991b). mapping the margins: intersectionality, identity politics, and violence against women of color. stanford law review, 43, 1241–1299. crenshaw, k. (2017c). on intersectionality: essential writings. new press. new york, ny. danermark, et al., (2002). explaining society, critical realism in the social sciences, critical realism interventions. routledge, london. davis, a. (1981). women, race and class. new york: random house. davies, j., mccrae, b.p., dochnahl, a., pickering, t., harrison, zakrzewski, & wilson (2000) identifying male college students' perceived health needs, barriers to seeking help, and recommendations to help men adopt healthier lifestyles. journal of american college health, 48, 259-267. das, a.k. kemp, s. f. (1997). between two worlds: counseling south asian americans. journal of multicultural counseling and development, 10, 2-15. deane, f. p., wilson, c. j., & ciarrochi, j. (2001). suicidal ideation and help-negation: not just hopelessness or prior help. journal of clinical psychology, 57, 1–14. de maio, f. g., & kemp e. (2010). the deterioration of health status among immigrants to canada. global public health, 5(5), 462-478. dodson, t. a., & borders, l.a.d. (2006). men in traditional and non-traditional careers: gender role attitudes, gender role conflict, and job satisfaction. the career development quarterly, 54, 283-296. donadey, a. (2002). negotiating tensions: teaching about race issues in graduate feminist classrooms. nwsa journal, 14(1), 82-102. dyson, r., & renk, k. (2006). freshman adaptation to university life: depressive symptoms, stress, and coping. journal of clinical psychology, 62, 1231-1244. ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 issn 2563-9269 299 eagly, a. (1987). sex differences in social behaviour: a social role interpretation. hillsdale, nj: erlbaum. eisenberg, d., downs, m. f., golberstein, e., & zivin, k. (2009). stigma and help seeking for mental health among college students. medical care research and review, 66, 522-541. eisenberg, d., gollust, s.e., golberstein, s.e., & hefner, j.l. (2007). prevalence and correlates of depression, anxiety, and suicidality among university students. american journal of orthopsychiatry, 77, 534-542. eisenberg, d., marilyn, f.d., ezra, g, & zivin, k. (2009). stigma and help seeking for mental health among college students. medical care research and review, 66, 522-541. else-quest, n. m., shibley hyde, j. (2017). intersectionality in quantitative psychological research. psychology of women quarterly, 40(3), 319-336. field, a. (2009). discovering statistics using spss (3rd edition). london: sage publication. fischer, a. r., & shaw, c. m. (1999). african americans’ mental health and perceptions of racist discrimination: the moderating effects of racial socialization experiences and selfesteem. journal of counseling psychology, 46, 395-407. flatt, a, k. (2013). a suffering generation: six factors contributing to the mental health crisis in north american higher education. the college quarterly, seneca college of applied arts and technology, 6. gary, f. a., yarandi, h. n., & scruggs, f. c. (2003). suicide among african americans: reflections and a call to action. issues in mental health nursing, 24, 353–375. gary, f. a. (2005). stigma: barrier to mental health care among ethnic minorities. issues in mental health nursing, 26, 979-999. gee, g. c., ro, a., shariff-marco, s., & chae, d. (2009). racial discrimination and health among asian americans: evidence, assessment, and directions for future research. epidemiological reviews, 31, 130-151. giamos, c. et al. (2017). understanding campus culture and student coping strategies for mental health. issues in five canadian colleges and universities. canadian journal of higher education. volume 47(3), pp 120135. glenn, e. n. (2015). settler colonialism as structure: a framework for comparative studies of u.s. race and gender formation. sociology of race and ethnicity. 1(1) 54–74. goffman, e. (1963). stigma: notes on the management of spoiled identity. prentice hall. good, g.e., & wood, p.k. (1995). male gender role conflict, depression, and help seeking: do college men face double jeopardy? journal of counseling & development, 74, 70-75. gollust, s.e., eisenberg, d., & golberstein, e. (2008). prevalence and correlates of self-injury among university students. journal of american college health, 56, 491-498. gong, f., gage, s.l., & tacata, l.a. (2003). help seeking behaviour among filipino americans: a cultural analysis of face and language. journal of community psychology 31: 469-488. gonzalez, j.m., alegria, m., & prihoda, t.j. (2005). how do attitudes toward mental health treatment vary by age, gender, and ethnicity in young adults? journal of community psychology, 33, 611-629. gorman, r. (2013). mad nation? thinking through race, class, and identity politics. in r. menzies, g. reaume, & b. lefrançois (eds.), mad matters: a critical reader in canadian mad studies. toronto: canadian scholars press. government of canada (2017). the human face of mental health and mental illness in canada. ottawa: minister of public works and government services of canada. government of ontario (2011). open minds healthy minds ontario’s comprehensive mental health and addictions strategy. grace, s. l., et al. (2016). the mental health status of ethnocultural minorities in ontario and their mental health care. bmc psychiatry. 16:47. griffiths, k. m., christensen, h., jorm, a. f., evans, k., & groves, c. (2004). effect of web-based depression literacy and cognitive behavioural therapy interventions on stigmatizing attitudes to depression: randomized controlled trial. british journal of psychiatry, 185, 342-342-349. issn 2563-9269 300 griselda, v. (2009). the mediating effect of acculturation on the effectiveness of culturally adapted cognitive behavioural therapy with mexican americans suffering from depression. the university of texas at austin. hansson, e., tuck, a., lurie, s. (2012). rates of mental illness and suicidality in immigrant, refugee, ethnocultural and racialized groups in canada. canadian journal of psychiatry. 57:111-21. han, m., & pong, h. (2015). mental health helpseeking behaviours among asian american community college students: the effect of stigma, cultural barriers, and acculturation. journal of college student development, 56(1), 1-14. doi:10.1353/csd.2015.0001. harper, d., & thompson, a.r. (2012). qualitative research methods in mental health and psychotherapy. new york, ny: john wiley. hicks, t., & heastie, s. (2008). high school to college transition: a profile of the stressors, physical and psychological health issues that affect the first-year on-campus college student. journal of cultural diversity, 15, 143-147. hill collins, p., & bilge, s. (2016). intersectionality. cambridge: polity press. howarth, c. (2006). race as stigma: positioning the stigmatized as agents, not objects. journal of community & applied social psychology, 16, 442-451. hun-bin shue et al (2017) an exploratory study of help-seeking attitudes and coping strategies among college students by race and gender. measurement and evaluation in counselling and development, 37, 3. hsu, l. (2011). asian students changing the face of canadian universities. retrieved fromhttp://www.wantchinatimes.com/new s-subclass. hwang, w. & ting, j. y. (2008). disaggregating the effects of acculturation and acculturative stress on the mental health of asian americans. cultural diversity and racialized psychology, 14, 147-154. hyman, i., & jackson, b. (2010). the healthy immigrant effect: a temporary phenomenon? health policy research bulletin, 17, 17-21. hysenbegasi, a., hass, s.l., & rowland, c.r. (2005). the impact of depression on the academic productivity of university students. journal ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 of mental health policy and economics, 8, 145-151. javier, j.r., lahlff, m., ferrer, r.r., & huffman, l.c. (2010). examining depressive symptoms and use of counseling in the expat year among filipino and non-hispanic white adolescents in california. journal of development and behavioural pediatrics, 31, 295-303. john, d.a., de castro, a.b., martin, d.b., duran, b., & takeuchi, d.t. (2012). does an immigrant health paradox exist among asian americans? associations of nativity and occupational class with self-rated health and mental disorders. social science medicine, 75, 2058-2098. jones c. p., laveist ta, lillie-blanton m. (2000). “race” in the epidemiologic literature: an examination of the american journal of epidemiology, 1921–1990. jorm, a.f., korten, a.e., jacomb, p.a., christensen, h., rodgers, b., & pollitt, p. (1997). mental health literacy: a survey of the public's ability to recognize mental disorders and their beliefs about the effectiveness of treatment, medical journal of australia, 166(4), 182-186. khanlou, n. (2003a). mental health promotional education in multicultural settings. nurse education, 2, 96-103. khanlou n, koh j, & mill c. (2008). cultural identity and experiences of prejudice and discrimination of afghan and iranian immigrant youth. international journal of mental health & addiction, 6(3), 494-513. khanlou, n. (2010b). migrant mental health in canada. canadian issues, summer, pp. 9-16. knifton, l. (2012). understanding and addressing the stigma of mental illness with racialized communities. journal health sociology review, 21, 3. kisch, j., leino, e.v., & silverman, m.m. (2005). aspects of suicidal behaviour, depression, and treatment in college students. national college health assessment survey, 35, 3-13. komiya, n., good, g. e., & sherrod, n. b. (2000). emotional openness as a predictor of college students' attitudes toward seeking psychological help. journal of counseling psychology, 47, 138-143. kühberger, a., fritz, a., lermer, e., & scherndl, t. (2015). the significance fallacy in inferential statistics. bmc research notes, 8, 84. ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 issn 2563-9269 301 kwok, j. (2013). factors that influence the diagnoses of asian americans in mental health: an exploration. perspectives in psychiatric care, 49(4), 288-292. islam, f. (2013). examining the healthy immigrant effect for mental health in canada. university of toronto medical journal, 90(4), 1-7. iwamoto, d., liu, w. m., & mccoy, t. e. (2011). an exploratory model of substance use among asian american women: the role of depression, coping, peer use and asian values. journal of ethnicity in substance abuse, 10(4), 295-315. leong, f. t. l., kim, h. h. w., & gupta, a. (2011). attitudes toward professional counseling among asian-american college students: acculturation, conceptions of mental illness, and loss of face. asian american journal of psychology, 140, 140-153. leong, f., park, y.s., & kalibatseva, z. (2013). disentangling immigrant status in mental health: psychological protective and risk factors among latino and asian american immigrants. american journal of orthopsychiatry, 84, 361-371. levasseur, m. t., kelvin, e. a., & grosskopf, n. a. (2013). intersecting identities and the association between bullying and suicide attempt among new york city youths: results from the 2009 new york city youth risk behaviour survey. american journal of public health, 103(6), 1082-1089. link, b. g., struening, e. l., neese-todd, s., asmussen, s., & phelan, j. c. (2001). stigma as a barrier to recovery: the consequences of stigma for the self-esteem of people with mental illnesses. psychiatric services, 52, 1621– 1626. lien, y., kao, y., liu, y., chang, h., tzeng, n., lu, c., & loh, c. (2015b). internalized stigma and stigma resistance among patients with mental illness in han chinese population. psychiatry quarterly, 86(2). lipson, j.g., & meleis, a.i. (1983). issues in health care of middle eastern patients. cross-cultural medicine, 139, 854-861. livingston, j., patel, n., bryson, s., hoong, p., lal, r., morrow, m. (2018) stigma associated with mental illness among asian men in vancouver, canada. international journal of social psychiatry. lou, y. & beaujot, r. (2005). what happens to the healthy immigrant effect: the mental health of immigrants to canada? discussion paper no. 05-15. london, on: population studies centre, university of western ontario. loya, f., reddy, r., & hinshaw, s. p. (2010). mental illness stigma as a mediator of differences in caucasian and south asian college students' attitudes toward psychological counseling. journal of counseling psychology, 57, 484484. mackenzie, s., wiegel, j.r., mundt, m., brown, d., saewyc, e., heilegenstein e., harahan, b., & fleming, m. (2011). depression and suicide ideation among students accessing campus healthcare. american journal of orthopsychiatry, 81, 101-107. mackean, g. (2011). mental health and well-being in postsecondary education settings: a literature and environmental scan to support planning and action in canada. a report for the june 2011 pre-cacuss workshop. mcgough et al, (2018). experience of providing cultural safety in mental health to aboriginal patients: a grounded theory study. international journal of mental health nursing, 27(1):204-213. mental health commission of canada. (2012). changing directions, changing lives: the mental health strategy for canada. calgary, ab. mikolajczyk, r.t., bredehorst, m., kheilalfat, n., maler, c., & maxwell, a.e. (2007). correlates of depressive symptoms among latino and non-latino white adolescents: findings from the 2003 california health interview survey. bmc public health, 21, 7-21. mohanty, c., russo, a., & torres, l. (eds.). (1991). third world women and the politics of feminism. bloomington: indiana university press. morrow, m. & halinka-malcoe, l. (2017). critical inquiries for social justice in mental health. toronto, on: university of toronto press. mowbray, c.t., mandiberg, j.m., stein, c.h., megivern, d., strauss, s. et al. (2006). campus mental health services: recommendations for change. american journal of orthopsychiatry, 76, 226-237. mikolajczyk, r.t., bredehorst, m., kheilalfat, n., maler, c., & maxwell, a.e. (2007). correlates issn 2563-9269 302 of depressive symptoms among latino and non-latino white adolescents: findings from the 2003 california health interview survey. bmc public health, 21, 7-21. minkov, m. (2010). nations with more dialectical selves exhibit lower polarization in life quality judgments and social opinions. crosscultural research, 43, 230-250. organisation for economic co-operation and development countries oecd (2011). ojeda, v. d., & bergstresser, s. m. (2008). gender, race-ethnicity, and psychosocial barriers to mental health care: an examination of perceptions and attitudes among adults reporting unmet need. journal of health and social behaviour, 49(3), 317334. oh, h., park, k., yoon, s., & kim, y. (2018) clinical utility of beck anxiety inventory in clinical and nonclinical korean samples. frontiers of psychiatry, 9, 666. olding, m. & yip, a. (2014). policy approaches to postsecondary student mental health. ocad university & ryerson university campus mental health partnership project. toronto, on. olenick, s.g. (2012). an examination of the relationship between emotional expressivity and attitudes toward and barriers to seeking psychological help. ph.d. dissertation. ball state university, muncie, indiana. pahwa, p., karunanayake, c. p., mccrosky, j., & thorpe, l. (2012). longitudinal trends in mental health among ethnic groups in canada. chronic diseases and injuries in canada, 32, 164-176. paniaguan, f., et al. (2013). the handbook of multicultural mental health: assessment and treatment of diverse populations (2nd ed.). san diego, ca: academic press. parent, m.c., hammer, j. h., bradstreet, t. c., schwartz, e. n., & jobe, t., (2018). men’s mental health help-seeking behaviours: an intersectional analysis. american journal of men’s health, 112(1) 64-73. pasupuleti, r. (2013). cultural factors, stigma, stress, and help-seeking attitudes among college students. ph.d. dissertation. university of rhode island. patterson, p., & kline, t. (2008). report on postsecondary institutions as healthy settings. the pivotal role of student services, health ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 and learning knowledge centre. victoria, b.c., canada. (accc). paradies, y., ben, j., denson, n., elias, a., priest, n., pieterse, a., gupta, a., kelaher, m., & gee, g. (2015). racism as a determinant of health: a systematic review and meta-analysis. plos one, 10(9). pernice, r. brook, j. (1996). refugee’s and immigrants; mental health: association of demographic and post-immigration factors. the journal of social psychology, 136(4), 511-519. phillips, l. t., & lowery, b. s. (2018). herd invisibility: the psychology of racial privilege. current directions in psychological science, 27(3), 156-162. plaut, v. c., thomas, k. m., hurd, k., & romano, c. a. (2018). do color blindness and multiculturalism remedy or foster discrimination and racism? current directions in psychological science, 0963721418766068. potochnick, s., & perreira, k.m. (2010). depression and anxiety among first-generation latino youth: key correlates and implications for future research. journal of nervous and mental disorders, 198, 470-477. prakash, b.b. et al, (2013). religion and mental health. indian j. psychiatry, 55, s187-s194. price, e. l., mcleod, p. j., gleich, s. s., & hand, d. (2006). one-year prevalence rates of major depressive disorder in first-year university students. canadian journal of counselling, 40, 68– 81. proudfoot, j. (2013). the future is in our hands: the role of mobile phones in the prevention and management of mental disorders, australian & new zealand journal of psychiatry, 47(2), 111-113. prat-sala, m. & redford, p. 2010. the interplay between motivation, self-efficacy, and approaches to studying. british journal of educational psychology, 80, 283-305. rao, d., feinglass, j., & corrigan, p. (2007). racial and ethnic disparities in mental illness stigma. journal of nervous and mental disease, 195(12), 1020-1023. rickwood, d., deane f.p., wilson, c.j., & ciarrochi, j. (2005). young people's help seeking for mental health problems, advances in mental health, 4(3), 218-25. ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 issn 2563-9269 303 rickwood, d., deane, f., & wilson c. (2007). when and how do young people seek professional help for mental health problems? medical journal of australia 187(7), 35-39. richeson, j. a. (2018). the psychology of racism: an introduction to the special issue. current directions in psychological science, (27)3. ca: wadsworth. rider, j. (2013). york university approves mental health strategy for students, faculty and staff. toronto, canada. york university. ritsher, j. b., otilingam, p. g., & grajales, m. (2003). internalized stigma of mental illness: psychometric properties of a new measure. psychiatry research, 121(1), 31-49. rossiter, k. r. & morrow, m. (2011). intersectionality framework in mental health: moving from theory to practice. in hankivsky, o. (ed.). health inequalities in canada: intersectional frameworks and practice (pp. 312-330). vancouver, bc ubc press. ryan, a. m., & pintrich, p. r. (1997). should i ask for help? the role of motivation and attitudes in adolescents' help seeking in math class. journal of educational psychology, 89(2), 329-341. rubin, m., watt, s. e., & ramelli, m. (2012). immigrants’ social integration as a function of approach-avoidance orientation and problem-solving style. international journal of intercultural relations, 36, 498-505. ryder, a., alden, l., & paulhus, d. (2000). is acculturation unidimensional or bidimensional? a head-to-head comparison in the prediction of personality, self-identity, and adjustment. journal of personality & social psychology, 79, 49-65. santor, d., short, k., & ferguson, b. (2009). taking mental health to school: a policyoriented paper on school-based mental health for ontario. sashidharan, t., pawlow, l. a., & pettibone, j. c. (2012). an examination of racial bias in the beck depression inventory-ii. cultural diversity and racialized psychology, 18(2), 203-209. sam, d.l, & berry, j. w. (2010). acculturation: when individuals and groups of different cultural backgrounds meet. perspectives on psychological science 5, 472-484. sawatzky, r., ratner, p.a., richardson, c.g., washburn, c., sudmant, w., & mirwaldt, p. (2012). stress and depression in students: the mediating role of stress-management self-efficacy. nursing research, 61(1), 13-21. scott, n. a., & siltanen, j. (2017). intersectionality and quantitative methods: assessing regression from a feminist perspective. international journal of social research methodology, 20(4). smith, p.b. (2004). acquiescent response bias as an aspect of cultural communication style. journal of cross-cultural psychology, 35, 5061. statistics canada (2017), population by visible minority groups and median age, canada, 2001 and 2016”. focus on geography series, 2016. strine, t.w., mokdad, a.h., & dube, s.r. (2008). the association of depression and anxiety with obesity and unhealthy behaviours among community-dwelling u.s. adults. general hospital psychiatry, 30, 127-137. storrie, k., ahern, k., & tuckett, a. (2010). a systematic review: students with mental health problems—a growing problem. international journal of nursing practice, 16(1),1-6. surgenor, l.j. (1985). attitudes towards seeking professional psychological help. new zealand. journal of psychology, 14, 27-33. tam, l. (2013). whither indigenizing the mad movement? theorizing the social relations of race and madness through conviviality. in r. menzies, g. reaume, & b. lefrançois (eds.), mad matters: a critical reader in canadian mad studies (pp. 281– 297). toronto: canadian scholars press. telzer, e.h. (2010). expanding the acculturation gapdistress model: an integrative review. human development, 53, 313-340. ting, j. y., & hwang, w. (2009). cultural influences on help-seeking attitudes in asian american students. american journal of orthopsychiatry, 79(1), 125-132. vogel, d. l., heimerdinger-edwards, s. r., hammer, j. h., & hubbard, a. (2011). “boys don’t cry”: examination of the links between masculine norms and help-seeking attitudes for men ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 issn 2563-9269 304 from diverse cultural backgrounds. journal of counseling psychology, 58, 368–382. vogel, d. l., wade, n. g., & hackler, a. h. (2007). perceived public stigma and the willingness to seek counseling: the mediating roles of self-stigma and attitudes toward counseling. journal of counseling psychology, 54, 40-50. walsemann, k. m. et al., (2011). the intersection of school: racial composition on adolescent depression & somatic symptoms. social science medicine vol 72(11). weiss, m., jadhav, s., raguram, r., vounatsou, p., & littlewood, r. (2001). psychiatric stigma across cultures: local validation in bangalore and london. anthropology & medicine, 8(1), 71-87. world mental health international college student project (2018). world health organization, (2010). health and human rights. retrieved from: http://www.who.int/mediacentre/factsheet s/fs323/en/. wright, a., jorm, a.f., harris, m.g., mcgorry, p.d. (2007). what's in a name? is accurate recognition and labelling of mental disorders by young people associated with better help-seeking and treatment preferences? society for psychiatry and epidemiology,42(3), 244-250. wu, z., & schimmele, c. (2005). the healthy migrant effect on depression: variation over time? canadian studies in population, 32(2), 271295. xu, m.a., & mcdonald, j.t. (2010). the mental health of immigrants and minorities in canada: the social and economic effects. canadian issues, summer 2010, 29-32. yamawaki, n., pulsipher, c., moses, j. d., rasmuse, k. r., & ringger, k. a. (2011). predictors of negative attitudes toward mental health services: a general population study in japan. european journal of psychiatry, 25(2), 101-110. yang, l. h. (2007). application of mental illness stigma theory to chinese societies: synthesis and new directions. singapore medical journal, 48(11), 977-985. yang, l. h., & kleinman, a. (2008). face and the embodiment of stigma in china: the cases of schizophrenia and aids. social science & medicine, 67(3), 398-408. doi: 10.1016/j.socscimed.2008.03.011. yang, l. h., thornicroft, g., alvarado, r., vega, e., & link, b. g. (2014). recent advances in crosscultural measurement in psychiatric epidemiology: utilizing 'what matters most' to identify culture-specific aspects of stigma. international journal of epidemiology, 43(2). young, d. k., & ng, p. y. (2016). the prevalence and predictors of self-stigma of individuals with mental health illness in two chinese cities. international journal of social psychiatry, 62(2), 176-185. ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 issn 2563-9269 305 table 1: list of survey instruments variables instrument items socio-demographic factors questionnaire designed by the researcher. 25 attitudes attitudes toward seeking professional help scale (fischer & farina, 1995). 10 intention stigma expertness of professionals beliefs about psychological services scale (aegisdottir, & gerstein, 2009). 18 identification with mainstream culture identification with heritage culture vancouver index of acculturation (ryder, alden & paulhus, 2000). 20 race-related stress race-related events scale (waelde, pennington, mahan, kabour, and marquett, 2010). 22 depression symptoms centre for epidemiological studies depression scale (radloff, 1977). 20 personal help-seeking behaviour general help-seeking questionnaire (wilson, deane, ciarrochi & rickwood, 2005). 12 anxiety beck anxiety inventory (beck, epstein, brown, & steer,1988) 21 ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 issn 2563-9269 306 figure 1. sample racial/ethnic diversity (n = 491) black/african black/african american black/caribbean black/east african hispanic mixed white/caucasian asian asian/afghan asian/eastern asian/filipino asian/indo-caribbean asian/middle eastern asian/south eastern asian/southern black category 15.9% 3.1% 2.4% 1.6% 3.7% 1.8% 12.0% 7.7% 31.2% 0.6% 7.1% 0.4% 4.3% 4.9% 2.2%1.0% ihtp, 1(2), 288-307, 2021 cc by-nc-nd 4.0 issn 2563-9269 307 table 2: comparison of the mean scores of non-racialized vs racialized students variable racial/ethnic group non-racialized (n = 78) racialized (n = 413) m lower 95% ci upper 95% ci m lower 95% ci upper 95% ci attitudes toward seeking help 28.56* 27.29 29.84 26.63* 26.16 27.10 informal help seeking 34.60 32.30 36.90 35.85 34.87 36.82 intention to seek help 4.09 3.84 4.35 3.70 3.60 3.81 stigma 2.56 2.40 2.73 2.80 2.71 2.87 expertness of professionals 4.44 4.23 4.66 4.32 4.22 4.42 identification with heritage culture 6.18 5.85 6.50 6.60 6.43 6.76 identification with mainstream culture 6.69 6.42 6.97 6.36 6.23 6.49 race related stress 2.61* 1.83 3.40 5.95* 5.53 6.38 anxiety symptoms 13.39 10.87 15.91 14.47 13.26 15.68 depression symptoms 19.07 16.22 21.93 21.42 20.32 22.52 note: * 95% ci do not overlap, reflecting significant differences between the mean scores ihtp, 2(1), 80-87, 2022 cc by-nc-nd 4.0 issn 2563-9269 80 the need for clarification of terminology and labels in interprofessional care: a commentary kateryna metersky1, rostislav axenciuc2, emily mitchell3, sifelipilu nyathi1 1daphne cockwell school of nursing, ryerson university, toronto, canada, 2the royal london hospital, london, united kingdom, 3child & youth response team – toronto public health, toronto, canada corresponding author: k. metersky (kateryna.metersky@ryerson.ca) abstract background: the current healthcare environment is filled with numerous team caring models, which are often used interchangeably, but ultimately mean different levels of collaboration among hcps, and between hcps and patients: multiprofessional collaboration, transprofessional collaboration, and interprofessional patient-centered collaborative (ipcc) care. furthermore, the labels for these care models are not patient-friendly, portraying that only hcp ‘professionals’ comprise the team membership. clarity is required around the terminology and labeling of these caring models to ensure enhanced patient involvement within interprofessional teams. discussion: the definitions of the three team care models are provided with an explanation of how these models of care connect to the 55year-old patient’s case and impact on the relationship between hcps and patient. conclusion: while ipcc care is considered as the gold standard for the collaboration between a variety of hcp professional groups and the patient, work needs to be done on the label applied to this caring model. future research should explore, from patients’ perspectives, the labels used in ipcc care and propose an alternative title that is more inclusive of patients as team members. keywords interprofessional care, patient-centered care, patient involvement introduction over the last two decades, there has been increasing interest in developing collaborative approaches to healthcare delivery, with interprofessional collaboration viewed as essential to providing safe, efficient, and high-quality patient care (baker et al., 2008). discourses of interprofessional collaboration recommend a patient-centred approach, with efforts to place patients at the centre of their care team (fox & reeves, 2015). despite this discourse, most interprofessional teams are characterized by a professional-centred approach, rarely calling upon the patient to participate meaningfully in their care (bilodeau et al., 2015). patients need to be seen as part of the circle of care, not at the centre of their care team as this can further segregate the patient from collaborative team involvement and decision-making (metersky et al., 2021). for teams to foster a culture conducive to interprofessional patient-centred collaborative (ipcc) care, there is a need for clear definitions and a shared understanding of the processes that facilitate patient participation (bilodeau et al., 2015; metersky et al., 2021). in this paper, we explore the differences between multiprofessional, transprofessional, and ipcc approaches to care. for each model, we attempt to locate the patient as a valued member of the interprofessional team. we present a case study to illustrate the differences in collaboration with each model of care, and the complexities of enacting collaborative and patient-centered care (pcc) in the context of daily practice. our aim is to stimulate discussion and challenge current thinking around the terminology used in the field of interprofessional care 81 ihtp, 2(1), 80-87, 2022 cc by-nc-nd 4.0 issn 2563-9269 delivery. our hope is to contribute to the creation of a new path moving forward, one in which patients and health care providers work together to establish priorities for care. background the world health organization (who) has reported that one-third of the world’s population experience some form of a chronic disease, with 82% of deaths worldwide being attributed to non-communicable chronic diseases such as cancer, cardiovascular disease, chronic respiratory disease, and diabetes (2014), prior to covid-19. patients with chronic conditions require the care and expertise of multiple healthcare providers (hcps). interprofessional collaboration is viewed as a necessity in delivering safe, efficient, high-quality pcc that is responsive to the unique needs of the individual (dahlke et al., 2019; fox & reeves, 2015). goals of interprofessional collaboration include improving coordination of care and optimizing outcomes for patients. studies have supported the value of interprofessional collaboration in achieving these aims (fox & reeves, 2015). for example, interprofessional collaboration has been linked to enhanced patient safety and health outcomes (adams & feudale, 2018; dunn, et al., 2018; martin et al. 2010; mcgilton et al., 2018; szafran et al., 2018; van dongen et al., 2017), improved coordination and quality of care (dahlke et al., 2019; hepp et al., 2015), a healthier work environment for team members (fox & reeves, 2015) and decreased health care spending (mitchell et al., 2011). interprofessional collaboration is viewed as a necessary condition for the delivery of pcc. as noted by fox and reeves (2015), while most interprofessional teams characterize their practice as being patient centered, definitions of pcc differ. core principles include respect, shared decision-making, and participation of patients in their care (bilodeau et al., 2015; fox & reeves, 2015). patients with chronic diseases are required to manage their own care on a 24 hour 7 days per week basis, while hcps only interact with these patients at episodic intervals of time. to this end, it is really the patients themselves who are “in charge” of their ongoing care. the expertise patients gain is an important aspect that hcps need to understand and build onto patients’ overall plans of care. therefore, patients need to become active in their own care and assume the role of being their own “drivers of care” (orchard, 2015). omitting the voices of patients, particularly those with chronic diseases will lead to an increase in healthcare expenditures; and reduced health outcomes (canadian patient safety institute, 2017). thus, to make significant changes in how patients become engaged in their care, there needs to be a shift in the labelling of terminology and how it is being used to address care delivery occurring through interprofessional teams. however, the current healthcare environment is characterized by several team caring models. these models are often used interchangeably, however have different levels of collaboration between hcps and patients and include: multiprofessional collaboration, transprofessional collaboration, and ipcc care. a specific case study will be used to demonstrate the different ways patient participation can be viewed through each of these care models. case presentation a 55-year-old male was admitted to the post-surgical unit nine days after a transurethral resection of the prostate due to an increased inability to bear weight on his right leg and extensive discomfort to the right hip joint. the length of time it took for the correct diagnosis to be made from the time of admission was exactly four weeks, five days, and two hours. this is also the amount of time it took for the patient to finally have his voice heard as, from the start of admission, the patient felt silenced and not involved in his care. members of the patient’s interprofessional team often communicated with him through the curtain, at times without an introduction, or raised their voices whenever he tried to voice concerns. the patient was seldom involved in his care delivery, decisions made surrounding his plan of care, or provided with adequate information on the progression of his care and condition. the amount of advocacy the patient’s family needed to conduct on behalf of him was overwhelming. it was not until his relative got involved and used their title as a doctorate-prepared nursing professor did the interprofessional care team start taking the patient’s and family’s concerns seriously. 82 ihtp, 2(1), 80-87, 2022 cc by-nc-nd 4.0 issn 2563-9269 discussion the above case describes a factual encounter of a patient with the canadian healthcare system during the fall of 2021. while a pcc approach is frequently cited as an essential element of ipcc care, in practice, patients are rarely called upon to participate meaningfully in their own care (bilodeau et al., 2015). in part, this disparity is related to a lack of clarity in the literature on how to differentiate ipcc from other closely related concepts with which it is often used interchangeably. hcps and patients may experience confusion about what level of collaboration is required between these groups within these different models of care (bilodeau et al., 2015). it is, perhaps, this issue of terminology that leathard (1994) would refer to as a “terminological quagmire”. if this issue is left unaddressed, it undermines the ability of patients and hcps to move forward in a truly collaborative care partnership. multiprofessional collaboration the most traditional model, and the one used most often in practice, is the multiprofessional collaboration model. multiprofessional collaboration implies hcps from two or more professions working independently on the same patient or towards a common goal (van bewer, 2017). the engagement of team members is minimal and may or may not include interactions with patients (atwal & caldwell, 2006). to work effectively, hcps need to have clearly defined roles, without which some professional categories can feel threatened in terms of their “positioning” on the team based on the traditional hcps’ hierarchical structure (wigert & wikström, 2014). due to the power dynamics involved in multiprofessional teamwork, some individual professions can present themselves as superior to others, as medicine has done for over a century. this can exclude patients who are often at the bottom of the hierarchy, if included at all, as part of the multiprofessional team (kvarnström & cedersund, 2006). according to lloyd et al. (2011), “multi” infers individuals working together in patient care with minimal or no interaction, while “professional” infers individuals working within a distinct group or discipline. both terms exclude the patient group since patients are often neither trained nor practice in a distinct field that would permit their involvement as part of the care team; patients are not considered “professionals”. patients do have a certain level of expertise comprised of knowledge of self, and the everyday realities of living with their chronic disease, something that hcps can never gain experience with (metersky et al., 2021). studies have shown that pcc is achievable when professionals collaborate and involve the patient as an active participant in their own health (mctavish & phillips, 2014). in multiprofessional collaboration however, both collaboration and patient involvement are minimal as professionals work independently or minimally interact with each other, and the patient is not actively engaged as part of the team (lloyd et al., 2011). to further illustrate the lack of patient inclusion in their own care, molleman et al. (2008) describe patients as being subjects that are discussed by professionals before hcps decide on the plan of care. this description of a lack of patient involvement is not uncommon as demonstrated in the case presented earlier, where the patient was excluded in his own care, had care decisions made for him, and felt that his voice was not heard. although acute carebased teams often label the care models they provide as being interprofessional in nature, they are delivering care under the multiprofessional model (metersky & schwind, 2015). transprofessional collaboration the term transprofessional collaboration is used less commonly in the literature. central to this concept is the “transcendance of disciplinary boundaries.” this denotes that multiple hcps work jointly with one another across and beyond their professional disciplines sharing knowledge, skills, responsibilities, and decision-making (van bewer, 2017; vyas et al., 2015). jones et al. (2019) reinforce that within this model of care overlap occurs as profession-specific theories and concepts are drawn together, paving the way for a shared conceptual framework across team members. however, when exploring definitions of transprofessional collaboration, these rarely include the possibility of patients’ active involvement within the care team (morphet et al., 2016; van bewer, 2017). 83 ihtp, 2(1), 80-87, 2022 cc by-nc-nd 4.0 issn 2563-9269 a distinction of transprofessional collaboration concerns the status of expert that is granted to all members of the transprofessional team (van bewer, 2017). as patients are not considered team members in this caring model, the status of expert is not extended to patients. this is concerning, as patients are considered experts of their chronic condition(s) (metersky et al., 2021). furthermore, according to morphet et al. (2016), transprofessional collaboration results in an overlap or blurring of roles, as hcps develop transprofessional skills and knowledge. to this end, transprofessional collaboration is less hierarchical in nature than multiprofessional collaboration, with power being distributed equally throughout the team so that individuals work collaboratively with one another towards a shared purpose or goal (morphet et al., 2016; van bewer, 2017). this sharing and equal distribution of power is not extended to the patient as the patient is an external member of the team. as well, transprofessional collaboration emphasizes mutual learning, trust, respect, and frequent, effective communication. input from each member of the team is valued as the team collectively strives to reach a shared understanding that transcends any individual or discipline (gordon et al., 2014; van bewer, 2017; vyas et al., 2015). while this is ideal, it is not clear in the literature whether this caring model allows for input from the patient and whether this input is valued at the same level as that of hcps’ on the team. according to gordon et al. (2014), transprofessional collaboration enables hcps to implement a “unified, holistic, and integrated treatment plan with all members of the team responsible for the same patient-centred goals” (p. 920). what is missing, though, is patient buy-in in relation to the treatment plan without which the success of the plan will be difficult to achieve. in relation to the case study, it is difficult to know if transprofessional collaboration occurred during the patient’s hospitalization experience, as the patient was provided with little opportunity to observe interactions among the team members. the patient only ever interacted with hcps on an individual basis, equating to minimal exchanges between team members and the patient. if transprofessional collaboration was occurring, it was not enacted in a way that engaged the patient meaningfully in his care. while this is reflective of transprofessional collaboration, as the patient is not included in the definition of this model of care, lack of patient involvement might have highly contributed to the extended hospitalization stay. interprofessional patient-centered collaborative care the term ipcc care is comprised of two separate, although highly complementary, concepts interprofessional collaboration and pcc. the definitions of interprofessional collaboration vary and pose further challenges towards clearly distinguishing interprofessional collaboration from the terms discussed above. as an example, one of the most cited definitions of interprofessional collaboration globally, by d’amour and oandasan (2005), describes it as caregiving that occurs when two or more different hcp professions come together to combine their expertise for the enhancement of patient health outcomes. although this definition implies that caregiving occurs around the patient, it does not describe the patient as: participating in the planning, implementing, or evaluating of their own care; involving them as a member of their caregiving team; or sharing their lived experience expertise related to their unique health issues. pcc has been described in the literature as a paradigm, a philosophy, a model of care, an approach to care, or as a practice-theory (registered nurses’ association of ontario [rnao], 2015). pcc is frequently cited as the main outcome of ipcc care with patients appearing at the “centre” of care delivery and having distinct roles within their team (bainbridge et al., 2010; d’ amour et al., 2005). although there are no broadly accepted definitions of pcc or agreements on its attributes, an integrative review of 178 articles found there was consistency in conceptualization of pcc across health professions (sidani & fox, 2014), three essential elements comprise pcc within the hcp – patient therapeutic relationship: holistic, responsive, and collaborative care (sidani & fox, 2014). of specific interest is the collaborative care component of pcc, which is a “process of facilitating patients’ engagement in treatment decision-making and in carrying out treatment or self-management recommendations” (sidani et al., 2015, p.12). the institute for patient and family-centred care (2012) and kitson et al. (2013) 84 ihtp, 2(1), 80-87, 2022 cc by-nc-nd 4.0 issn 2563-9269 both found the importance of the collaborative care component in pcc, which requires supporting patient involvement in shared decision-making and empowerment. however, in a descriptive paper by vanier et al. (2013) a proposal was made to change the label of pcc to partnering in care with patients to better reflect the collaborative care component of the term. considering the two concepts that comprise ipcc, commonly cited definition of ipcc describes this caring model as: a partnership between a team of health providers and a client where the client retains control over [their] care and is provided access to the knowledge and skills of team members to arrive at a realistic, team-shared plan of care and access to the resources to achieve the plan (orchard, 2010, p. 249). while this definition has been existed since 2010, patients still are often not considered as members of their interprofessional teams or are involved, to the degree that they prefer or are capable of, in their care. furthermore, while ipcc care does include the patient as working in partnership with their hcps, and does contain multiple “i’s” in its label, can the patient really see the “i” in this caring model? or does the patient stop at the suffix “professional” and limit their interaction with other team members? the patient from the case study would have been fully involved in his care if the care provided reflected orchard’s (2010) definition of ipcc care. the patient could have been considered as a valued member of the team, consulted throughout the care giving process, and fully engaged in the decision-making and development of his care plan, leading to enhanced health outcomes and greater care satisfaction (adams & feudale, 2018; sidani et al., 2015; van dongen et al., 2017). in the presented case, collaboration and pcc were listed as core values embedded in the hospital’s mission statement. however, the team did not incorporate the elements of pcc that comprise ipcc care. in fact, the team did not fully incorporate or deliver care from an interprofessional collaboration perspective as defined by d’amour and oandasan (2005). breakdowns in communication, valuing of options, and lack of trust and respect were evident. furthermore, a question remains around whether the patient in the case study would be comfortable being a member of an interprofessional pcc team. it could be argued that using the stem ‘professional’ projects the impression, both to hcps and patients, that these teams are only comprised of hcps coming together to share expertise. alternatively, it could be argued that patients bring their lived experience into the team, which represents their “professional expertise.” clearly there is no perfect label for ipcc care. for the time being the field uses interprofessional. perhaps in time the label of this concept will shift to be more inclusive of patients as team members. alternatively, with time patients will start to see themselves as professionals and be more confident in becoming members of interprofessional teams. conclusion this paper presented a “food-for-thought” overview of the terms associated with interprofessional care delivery and the levels of interaction and involvement the patient has with hcps within these models of care: multiprofessional, transprofessional, and ipcc care. while ipcc care is considered as the gold standard for the type of collaboration and care that needs to occur among hcps and patients, work needs to be done on the label applied to this caring model. while the most cited definition of ipcc care includes and considers the patient as an equal member of the interprofessional team (orchard, 2010), the label of this caring model does not align well with the definition, especially for patients who prefer to have greater involvement in their care. future research should further explore opinions about the labels used in ipcc care from the patient’s perspective, and propose a new, alternative title that is more inclusive of patients as team members. this is extremely crucial now, with the expansion of life expectancies, aging populations, and the increase in the volume of acute and chronic conditions because of the pandemic. globally, responsibility of care is shifting on to patients and their families to lessen the impact on healthcare systems and to lower healthcare expenditures (metersky et al., 2021). patients need to be included and feel that they are valued members of their interprofessional teams for this to be achieved. starting with the labels and terminology used in relation to collaborative models of care is an essential first step. 85 ihtp, 2(1), 80-87, 2022 cc by-nc-nd 4.0 issn 2563-9269 acknowledgement we would like to acknowledge the contributions of jo frolick, an undergraduate nursing student, for their assistance with preparing the manuscript for publication. references adams, h. a., & feudale, r. m. (2018). implementation of a structured rounding tool for interprofessional care team rounds to improve communication and collaboration in patient care. pediatric nursing, 44(5), 229-246. atwal, a., & caldwell, k. (2006). nurses' perceptions of multidisciplinary team work in acute health-care. international journal of nursing practice, 12(6), 359-360. doi:10.1111/j.1440-172x.2006.00595.x baker, c., pulling, c., mcgraw, r., dagnone, j. d., hopkins‐rosseel, d., & medves, j. (2008). simulation in interprofessional education for patient‐centred collaborative care. journal of advanced nursing, 64(4), 372-379. bainbridge, l., nasmith, l., orchard, c., & wood, v. (2010). competencies for interprofessional collaboration. journal of physical therapy education, 24(1), 6-11. doi:10.1097/00001416-201010000-00003 bilodeau, k., dubois, s., & pepin, j. (2015). interprofessional patient-centered practice in oncology teams: utopia or reality? the journal of interprofessional care, 29(2), 106112. doi:10.3109/13561820.2014.942838 canadian patient safety institute. (2017). engaging patients in patient safety – a canadian guide. www.patientsafetyinstitute.ca/engagingpati ents. dahlke, s., steil, k., freund-heritage, r., colborne, m., labonte, s., & wagg, a. (2018). older people and their families’ perceptions about their experiences with interprofessional teams. nursing open, 5(2), 158–166. doi: 10.1002/nop2.123 dahlke, s., hunter, k. f., kalogirou, m. r., negrin, k., fox, m., & wagg, a. (2020). perspectives about interprofessional collaboration and patient-centred care. canadian journal on aging, 39(3), 443-455. doi: 10.1017/s0714980819000539 d’amour, d., ferrada-videla, m., rodriguez, l. s. m., & beaulieu, m. (2005). the conceptual basis for interprofessional collaboration: core concepts and theoretical frameworks. journal of interprofessional care, 19(supplement), 116–131. doi:10.1080/13561820500082529 d’amour, d., & oandasan, i. (2005). interprofessionality as the field of interprofessional practice and interprofessional education: an emerging concept. journal of interprofessional care, 19(supplement), 8–20. doi:10.1080/13561820500081604. dunn, s. i., cragg, b., graham, i. d., medves, j., & gaboury, i. (2018). roles, processes, and outcomes of interprofessional shared decision-making in a neonatal intensive care unit: a qualitative study. journal of interprofessional care, 32(3), 284-294. doi: 10.1080/13561820.2018.1428186 fox, a., & reeves, s. (2015). interprofessional collaborative patient-centred care: a critical exploration of two related discourses. journal of interprofessional care, 29(2), 113118. doi: 10.3109/13561820.2014.954284 griffin, s. (1996). occupational therapists as health care team members: a review of the literature. australian occupational therapy journal, 43(1), 83-94. https://doi.org/10.1111/j.14401630.1996.tb01844.x gordon, r. m., corcoran, j. r., bartley-daniele, p., sklenar, d., sutton, p. r., & cartwright, f. (2014). a transdisciplinary team approach to pain management in inpatient health care settings. pain management nursing, 15(1), 426-435. doi: 10.1016/j.pmn.2013.01.004 hepp, s. l., suter, e., jackson, k., deutschlander, s., makwarimba, e., jennings, j., & birmingham, l. (2015). using an interprofessional competency framework to examine collaborative practice. journal of interprofessional care, 29(2), 131-137. institute for patientand family-centered care. (2012). patientand family-centered care. institute for patientand family-centered 86 ihtp, 2(1), 80-87, 2022 cc by-nc-nd 4.0 issn 2563-9269 care. https://www.ipfcc.org/about/pfcc.html jones, t., willis, e., amorim‐lopes, m., & drach‐ zahavy, a. (2019). advancing the science of unfinished nursing care: exploring the benefits of cross‐disciplinary knowledge exchange, knowledge integration and transdisciplinarity. journal of advanced nursing, 75(4), 905-917. https://doi.org/10.1111/jan.13948 kitson, a., marshall, a., bassett, k., & zeitz, k. (2013). what are the core elements of patientcentered care? a narrative review and synthesis of the literature from health policy, medicine and nursing. journal of advanced nursing, 69(1), 4-15. doi:10.1111/j.1365-2648.2012.06064.x kvarnström, s., & cedersund, e. (2006). discursive patterns in multiprofessional healthcare teams. journal of advanced nursing, 53(2), 244-252. https://doi.org/10.1111/j.13652648.2006.03719.x leathard, a. (1994). going inter-professional: working together for health and welfare. routledge. lloyd, v. j., schneider, j., scales, k., bailey, s., & jones, r. (2011). ingroup identity as an obstacle to effective multiprofessional and interprofessional teamwork: findings from an ethnographic study of healthcare assistants in dementia care. journal of interprofessional care, 25(5), 345-351. https://doi.org/10.3109/13561820.2011.56 7381 martin, j. s., ummenhofer, w., manser, t., & spirig, r. (2010). interprofessional collaboration among nurses and physicians: making a difference in patient outcome. swiss medical weekly, 1(140), 3536. doi: 10.4414/smw.2010.13062 mcgilton, k. s., sorin-peters, r., rochon, e., boscart, v., fox, m., chu, c. h., stewart, s. c., & sidani, s. (2018). the effects of an interprofessional patient-centered communication intervention for patients with communication disorders. applied nursing research, 39, 189-194. doi: 10.1016/j.apnr.2017.11.017 mctavish, a., & phillips, c. (2014). transforming the patient experience: bringing to life a patient and family-centred interprofessional collaborative practice model of care at kingston general hospital. patient experience journal, 1(1), 50-55. https://doi.org/10.35680/2372-0247.1008 merriam-webster dictionary. (2021). pandemic. https://www.merriamwebster.com/dictionary/pandemic metersky, k., orchard, c., adams, t., & hurlock chorostecki, c. (2021). patient roles in primary care interprofessional teams: a constructivist grounded theory of patient and health care provider perspectives. journal of interprofessional care, 1-9. doi:10.1080/13561820.2021.1892616 metersky, k., & schwind, j. k., (2015). interprofessional person centered care: stories and metaphors of experience. international journal of person-centered medicine, 5(2), 78-87. http://www.ijpcm.org/index.php/ijpcm/art icle/view/528 mitchell, r. j., parker, v., & giles, m. (2011). when do interprofessional teams succeed? investigating the moderating roles of team and professional identity in interprofessional effectiveness. human relations, 64(10), 1321-1343. https://doi.org/10.1177/001872671141687 2 molleman, e., broekhuis, m., stoffels, r., & jaspers, f. (2008). how health care complexity leads to cooperation and affects the autonomy of health care professionals. health care anal, 16(4), 329–341. morphet, j., griffiths, d. l., crawford, k., williams, a., jones, t., berry, b., & innes, k. (2016). using transprofessional care in the emergency department to reduce patient admissions: a retrospective audit of medical histories. journal of interprofessional care, 30(2), 226231. https://doi.org/10.1007/s10728-0070080-6 orchard, c. (2010). persistent isolationalist or collaborator: the role of nursing in interprofessional collaboration. journal of nursing management, 18(3), 248-257. doi:10.1111/j.1365-2834.2010.01072.x orchard, c. (2015). towards a framework of clientcentered collaborative practice. in c. https://doi.org/10.1111/j.1365-2648.2006.03719.x https://doi.org/10.1111/j.1365-2648.2006.03719.x https://doi.org/10.35680/2372-0247.1008 https://www.merriam-/ https://www.merriam-/ https://doi.org/10.1080/13561820.2021.1892616 http://www.ijpcm.org/index.php/ijpcm/article/view/528 http://www.ijpcm.org/index.php/ijpcm/article/view/528 87 ihtp, 2(1), 80-87, 2022 cc by-nc-nd 4.0 issn 2563-9269 orchard & l. bainbridge (eds.), interprofessional client-centered collaborative practice: what does it look like? how can it be achieved? (pp. 1-13). nova science publishers. registered nurses’ association of ontario [rnao]. (2015). best practice guidelines: personand family-centred care. registered nurses’ association of ontario. sidani, s., & fox, m. (2014). patient-centered care: clarification of its specific elements to facilitate interprofessional care. journal of interprofessional care, 28(2), 134-141. doi:10.3109/13561820.2013.862519 sidani, s., reeves, s., hurlock-chorostecki, c., van soeren, m., fox, m., & collins, l. (2018). exploring differences in patient-centered practices among healthcare professionals in acute care settings. health communication, 33(6), 716-723. doi: 10.1080/10410236.2017.1306476 szafran, o., kennett, s. l., bell, n. r., & green, l. (2018). patients’ perceptions of team-based care in family practice: access, benefits and team roles. journal of primary health care, 10(3), 248-257. doi: 10.1071/hc18018 van bewer, v. (2017). transdisciplinarity in health care: a concept analysis. nursing forum, 52(4), 339-347. doi: 10.1111/nuf.12200 van dongen, j. j. j., habets, i. g. j., beurskens, a., & van bokhoven, m. a. (2017). successful participation of patients in interprofessional team meetings: a qualitative study. health expectations, 20(4), 724-733. doi: 10.1111/hex.12511 vyas, r. m., aperovich, m., grayson, b. h., mccarthy, j. g., & rodriquez, e. d. (2015). from multidisciplinary to interdisciplinary to transdisciplinary care: an evolution in craniofacial surgery. plastic and reconstructive surgery, 135(4), 796e-797e. doi: 10.1097/prs.0000000000001137 wigert, h., & wilkström, e. (2014). organizing personcentred care in paediatric diabetes: multidisciplinary teams, long-term relationships and adequate documentation. bmc research notes, 7(72). https://doi.org/10.1186/1756-0500-7-72 world health organization [who]. (2014). global status report on non-communicable diseases 2014. http://www.who.int/nmh/publications/ncdstatus-report-2014/en/ yamamoto, c., wener, p., ripat, j., & woodgate, r. l. (2021). understanding interprofessional team delivery of patient-centered care: a qualitative secondary analysis. journal of interprofessional care, 6, 1-8. doi: 10.1080/13561820.2021.1899146 https://bmcresnotes.biomedcentral.com/articles/10.1186/1756-0500-7-72#auth-ewa-wikstr_m ihtp, 2(1), 118-128 2022 cc by-nc-nd 4.0 issn 2563-9269 118 understanding the health and well-being of canadian black children and youth during the covid-19 pandemic: a review janet kemei1, bukola salami 1 1faculty of nursing, university of albert, alberta, canada corresponding author: j. kemei (kemei@ualberta.ca) abstract the covid-19 pandemic has exacerbated health inequities and vulnerabilities in our society, with the black population being disproportionately affected. as previous pandemics have resulted in an increase in adverse events to children and youth, we reviewed the literature to examine the impact of the covid-19 pandemic on black children and youth. we found black children and youth experience psychosocial stressors related to uncertainties of the future. differential gender effects related to covid-19 are also apparent. physical distancing related to the covid19 pandemic which resulted in differential impacts on physical activity levels in children. we also noted, increase levels of isolation may result in undetected child abuse. the review highlights the urgent need for multifaceted interventions that address disparities in social determinants of health and psychosocial needs of black children and youth in canada. future research that addresses the effects of the covid-19 pandemic on black children and youth is needed to help create context-specific interventions. keywords black, children, covid-19, healthcare access, youth, intersectionality background the covid-19 pandemic resulted in dramatic disruptions of the global economy, resulted in massive loss of human life around the world, and exposed inequalities and vulnerabilities in our society. as of february 2022, globally, over 386 million people have been infected with covid-19 and more than 5.7 million have died from the disease, with canada reporting over three million cumulative cases and about 34,000 deaths, and united states of america reports over 75 million cumulative cases and about 880,000 deaths (who, 2022). evidence across the globe suggests black populations are at increased risk of contracting and dying from covid-19 compared to non-black people (millet et al., 2020; wadhera et al., 2020). black or african americans, who comprise 13.4% of the us population, are three times as likely to contract covid-19 and two times as likely to die from the virus than whites (soucheray, 2020). similarly, black canadians are disproportionately affected by covid-19. for instance, local resources indicate covid-19 rates are more than ten times higher in racialized communities (public health ontario, 2020). in toronto and montreal, rates of covid-19 infection are highly correlated with neighborhoods featuring a greater number of black people (bowden & cain, 2020). reports from manitoba indicate newcomer populations from southeast asian, african, filipino, and south asian communities have the highest rates of covid-19 infection, with africans posting 8.7 times more infections than the white population (bergen, 2021). despite making up only 37% of the manitoban population, the bipoc (black, indigenous, and people of color) population accounts for 61% of covid-19 infections (bergen, 2021). ihtp, 2(1), 118-128 2022 cc by-nc-nd 4.0 issn 2563-9269 119 there is an increase potential exposure to the covid-19 virus to the black people in canada. for instance, black canadians account for a disproportionately large percentage (19.3%) of workers employed in the healthcare and social assistance industry (morissette et al., 2021). although in the 2016 census indicated that black canadians account for only 3.5% of the population (statistics canada, 2017), many members of this community work in frontline occupations such as healthcare, hospitality services, and are more likely (41%) to report a requirement to face to face interactions in the job compared to the national average (25%) (african canadian civic engagement and innovative research group, 2020). a canadian analysis shows covid-19 risks are disproportionately higher in communities with higher household density, a higher proportion of essential workers, lower educational attainment, lower income, and more racialized residents (gallagher-mackay et al., 2021). while emerging literature points to impacts of covid-19 on black adults (millet et al., 2020; wadhera et al., 2020), there is minimal discussion on the differential impact of the covid-19 pandemic on black children and youth. although children are less likely to be infected with covid-19 than adults, the risk is higher for black children than other children (bandi et al., 2020). hence, shedding light on the health needs of black children related to the covid19 pandemic is an important consideration for postpandemic recovery. the purpose of this review is to examine the impact of the covid-19 pandemic on black children and youth and propose strategies towards a postcovid-19 recovery. this is important because the population health containment strategies utilized to curtail the spread of covid-19, including wearing a mask in public places, physical distancing, and quarantine, increase social risk, especially for children and youth faced with pre-existing inequities, such as black populations. due to unstable economic and social protective networks, experts predict an increase in child abuse cases concurrent with the covid-19 pandemic, similar to what has been seen in previous pandemics (peterman et al., 2020; rothe et al., 2015). e.g., ebola outbreaks have been linked to child maltreatment, including physical, sexual, and emotional abuse as well as neglect, prompting health and mental health issues among the children (kang & jain, 2020; peterman et al., 2020; rothe et al., 2015). in fact, sacks & murphey (2018) warns that adverse childhood experiences such as abuse, neglect, and dramatic events within the households that occur before the age of 18 years can impact the mental health of children and youth. thorough consideration of the impact of covid-19 on black children and youth enables understanding of the shortand longterm consequences of the covid-19 pandemic on the black population. first, we will present the theoretical lens used in this review, which is intersectionality. second, we will present the review of literature, and finally, the discussion and implications of the review. theoretical lens: intersectional insight into black children and youth health we used an intersectionality framework in this critical review. intersectionality highlights the diverse aspects of social locations, differences, and identities hidden due to structural processes, intersecting independently or simultaneously at different structural (macro, meso, and micro) levels in complex and independent ways (crenshaw, 1989). intersectionality considers that individuals can experience a phenomenon differently based on their unique identities, such as age, gender, race, and class (crenshaw, 1989). it is important to note that canada has a diverse black population, with several identities shaping their life experiences, such as age, gender, race, ability, and economic status. hence, these identities intersect to determine the lives of black children and youth in any given environment and could produce inequities in health and health outcomes. thus, as indicated by cho et al. (2013), society must consider these identities to enable an understanding of the social contexts of individuals. black canadian children and youth are born into racialized and socially disadvantaged communities. e.g., ottawa citizen reporter taylor blewett (2020) explains how racism plays a significant role in the health outcomes of black communities, especially access to employment. inequalities in socioeconomic factors contribute to health inequities. there has been an over-representation of black youth in the prison system. e.g., in ontario, 7.2% of black male ihtp, 2(1), 118-128 2022 cc by-nc-nd 4.0 issn 2563-9269 120 youth (18-24years) and 0.53% of black female youth, compared to 1.4% of white male youth and 0.18% of white females, were incarcerated in provincial facilities (owusu-bempah et al., 2021). black males are less likely to stream to academic programs, denying them the opportunity to attend college or university (bernard & smith, 2018; robson et al., 2018). similarly, they are less likely to access mental health services due to racism (salami et al., 2020). for instance, despite the structural interventions oriented towards containment of the covid-19 virus spread and the wellbeing of all populations, the black population was differentially affected. as seen, for example, in the increased risk of contracting and dying from covid-19 in the predominantly black neighborhood in toronto black neighborhoods in toronto and montreal (bowden & cain, 2020). moreover, children and youth from black communities had greater exposure to covid-19 during the lockdown period. black children and youth in canada already face significant challenges. existing disparities between black and non-black populations in social determinants of health, including structural inequalities and discrimination, account for the disproportionate risk and differential outcomes on the wellbeing of black people. their experiences are complex and multilayered, prompting a more critically informed analysis of disparities while considering multiple axis thinking in consideration of power (cho et al., 2013; collins and blige, 2016). thus, an analysis of the intersecting individual and structural inequalities through an intersectionality lens could offer a critical approach towards understanding intersecting forms of power and identities. this understanding will effectively address the 'multilayered and routinized forms of domination' (crenshaw, 1991, p. 1245) that often converge to determine the wellbeing of black children and youth. e.g., quarantine measures, lower education attainment, and reduced mental health resources during covid-19 could intensify the magnitude of the existing disparities for black children and youth. hence, an intersectionality lens brings to light a better understanding of how covid-19 has differentially impacted black children and youth. review of literature this section discusses the direct and indirect effects of the covid-19 pandemic that may exacerbate underlying vulnerabilities for black children and youth in canada, already living in socially disadvantaged contexts. we searched data from medline (1946 present), and cumulative index for nursing and allied health literature (cinahl) (1936 present) via ebscohost. we derived the search strategy from four main concepts: 1) covid-19, including variants; 2) black people or people of african descent or the african diaspora; 3) canada, and 4) youth or children. we did not apply publication date, study type, or language restrictions. our search criteria did not yield specific articles about covid-19 and black children and youth in canada. however, given the novelty of the covid-19 disease and the disproportionate impact on black people in canada, we have critically appraised literature on covid-19 and attempted to situate the black children and youth in canada. barriers to healthcare services canadians reported difficulties in accessing healthcare services, including dental care, mental health care, and rehabilitative care, during the covid19 pandemic (etowa et al., 2021). although difficulties in accessing healthcare services in canada are not new, the new models of care avoid face-to-face contact by the patients and clinicians during the covid-19 pandemic (bhatia et al., 2020; greenhalgh et al., 2020) could have contributed to these barriers. for instance, a study indicated that black children and youth in canada experience many barriers to accessing healthcare, including mental healthcare, regardless of the universal health care system (fantecoleman & jackson-best, 2020). these barriers are encountered in different levels, including systemic barriers such as wait times and poor access to physicians; practitioner-related barriers such as racism and discrimination and poor access to culturally competent care; and personal and community barriers such as internalized stigma and stigma from the community (fante-coleman & jackson-best, 2020). for instance, several reports document the disruption of services to students with disabilities, neurodiverse students, and students with specific health needs due to challenges with access to technology, adaptive equipment, and other learning ihtp, 2(1), 118-128 2022 cc by-nc-nd 4.0 issn 2563-9269 121 resources (dove et al., 2020; gallagher-mackay et al., 2021). this could have detrimental effects to children and youth, given that many families rely on schools for structured activities, including access to some health services and psychosocial support (dove et al., 2020). furthermore, children and youth lost the social and emotional support and mental health resources provided by teachers, counsellors, and social workers (lee, 2020). finally, children with autism spectrum disorder were at risk due to disruption of their daily routine and limited access to face-to-face therapy sessions (lee, 2020). therefore, given the exposures to constant discrimination, black children and youth are exposed to more psychological stressors, which could also lead to barriers to accessing mental health services (fantecoleman & jackson-best, 2020). mental health: psychosocial stressors related to uncertainties of the future in most countries, schools were closed for inperson attendance, recreation, and extracurricular activities for at least part of 2020 and 2021. social isolation is when the individual lacks a sense of social belonging, lacks engagement with others, and is deficient in fulfilling and quality relationships (nicholson, 2012). social isolation is critical in posttraumatic stress disorders following disasters; it exacerbates psychotic experiences, including posttraumatic symptoms, confusion, anger, and mental health outcomes such as depression, anxiety, and even suicide (brooks et al., 2020). in their study, powel and colleagues found that african american children and youth who are isolated or quarantined are more likely to develop acute stress disorder, adjustment disorder, and grief (powers et al., 2020). the closures contributed to social isolation among children and youth, leading to increased mental health conditions (dove et al., 2020). the covid-19 pandemic has negatively impacted the mental health of canadians, especially youth (statistics canada, 2020a). crowdsourced data indicate about 57% of participants ages 15-17 years reported their mental health had somewhat worsened following the physical distancing measures. visible minority groups were more likely to report poor mental health than white people (27.8 vs. 22.9%). women reported lower levels of mental health than men (52 vs. 58%) (statistics canada, 2020a). job loss and inadequate financial resources heightened generalized anxiety disorders, with black canadians more likely than others to report a moderate or significant impact of the pandemic on their ability to meet their financial obligations (statistics canada, 2020a). in addition, studies on the mental health of black youth in canada cite cultural expectations, racism, and discrimination as some of the factors impacting the mental health of black youth (salami et al., 2020). similarly, during the pandemic, black canadians were at risk of job layoffs or reduced hours, increasing the negative financial impacts and food insecurity for the black children and youth (african canadian civic engagement council & innovative research group, 2020; statistics canada, 2020b). hence, the black children and youth who are already experiencing barriers to accessing mental healthcare could experience more adverse mental health (lucente et a., 2021). physical activity in children and youth physical activity help children with the development of active and health lifestyles. experts speculate that social distancing measures and school closures contribute to social isolation and decreased physical activity (cost et al., 2021; moore et al., 2020). the closure of schools and community recreation centers and the transition of in-person schooling to virtual learning in most countries contributed to the disruption of physical activities of children and youth. moore and colleagues analyzed secondary data that examined the immediate impacts of covid-19 restrictions on canadian child and youth movement and play behaviors (moore et al., 2020). the study found the covid-19 restrictions markedly affected the physical activity of children and youth, as only 4.8% of children and 0.6% of youth were meeting the recommended combined 24-hour movement behavior guidelines; girls were less active than boys and youth, engaged in more social media, and slept more than boys (moore et al., 2020). another study that analyzed data collected in april 2020 by participaction in canada indicated specific characteristics such as parent involvement in restricting screen time, high household income, and being a boy increased adherence to movement ihtp, 2(1), 118-128 2022 cc by-nc-nd 4.0 issn 2563-9269 122 behaviors (guerrero et al., 2020). similar to moore et al. (2020), this study found girls were less active than boys, where boys were more likely to meet the physical activity recommendations than girls (45.0 vs. 26.3%) (guerrero et al., 2020). these results align with those from a study on the impact of the covid19 pandemic on us children, which showed a decrease in physical activity and an increase in the stress level of children and adolescents (tulchinfrancis et al., 2021). hence, documented benefits of movement and physical activity on children and youth include better cognitive and mental health and boosted immunity (lasselin et al., 2016; tremblay et al., 2016). as such, most black children in canada who live in crowded neighbourhoods could be greatly disadvantaged. a survey in toronto concluded that due to racism in canadian housing market, black people in canada mostly live in crowded neighbourhoods that don’t have access to safe outer spaces, limiting the physical activity of the children and youth (bowden & cain, 2020). thus, the loss of structured physical activities due to school closures could increase screen time among children and youth, which could be detrimental to their mental and physical health (gallagher-mackay, 2021; oberle et al., 2020). living in a detached house is more favorable with respect to healthy movement behaviors than living in an apartment due to greater access to front or back yards for outdoor physical activities. undetected child abuse based on experience from previous pandemics, stay-at-home measures can increase the rate of undetected child abuse due to decreased access to support services or safe places (gruber et al., 2021; kang & jain, 2020). an increase in economic uncertainties and limited access to family and friends support could increase the risk of child abuse. further, black children and youth in canada are more likely to be investigated and placed in child welfare systems than white children and youth (acpha, 2019). canada's latest release on family violence indicates increasing police-reported family violence against children, youth, intimate partners, and seniors (conroy, 2021). two-thirds of all victims of family violence in 2019 were women and girls, and girls aged 17 years and younger experienced a higher rate of sexual offenses, including sexual assault (conroy, 2021). however, child abuse reports decreased during the covid-19 pandemic, yet healthcare providers saw increased fractures and brain trauma at the children's hospital of eastern ontario (cheo) (campbell, 2021). bc's children's hospital (bcch) reported increasing nutritional neglect and starvation (campbell, 2021). schools are a safety net for children, as teachers usually assess signs of abuse (sistovaris et al., 2020). a national survey on the well-being of parents and children during the covid-19 pandemic in the usa (patrick et al., 2020) revealed that restricted movement, including stay-at-home measures and virtual schooling, forces children and youth to live with abusers or potential abusers and increases their anxiety and depression. the abusers have power over their victims when citizens are forced to isolate themselves at home (gerster, 2020). children could undergo physical and emotional maltreatment due to reduced supervision, illness, caregivers' isolation, reduced family protection, and continued parental work requirements (sistovaris et al., 2020). and mostly, girls were at greater risk of physical and sexual abuse (sistovaris et al., 2020). further, the alliance for child protection in humanitarian action (acpha) warns that the risk of increased abusive environments such as child labor is because of the loss of household income and the expectation for children to work due to school closures (acpha, 2019). different genders could experience abuse differently. for instance, in an abusive environment, girl children may not have equal learning time as boy children as they may be expected to continue childcare and housework regardless (sistovaris et al., 2020). as a result, girls are at greater risk of abuse, especially in homes where housework and other gender-imposed household responsibilities are designated to women and girls, such as caring for family members or doing chores (sistovaris et al., 2020). in addition, children could also face maltreatment when placed under the care of others when parents become ill or die from covid19 (sistovaris et al., 2020). similarly, a systematic review on temporal linkages between economic insecurity and child maltreatment found that economically insecure children experienced three to nine times more abuse than ihtp, 2(1), 118-128 2022 cc by-nc-nd 4.0 issn 2563-9269 123 their economically secure counterparts (conradhiebner & byram, 2020). with more time spent online, it is not surprising that reports of online sexual exploitation increased during the covid-19 pandemic. specifically, the canadian centre for child protection (c3p) released a statement in february of 2021 noting an 81% increase in reports of child exploitation (c3p, 2021). in response, the organization launched a series of videos for youth to educate them about sextortion. the examples above demonstrate why it is imperative to implement sustainable strategies to mitigate child maltreatment risks that involve communities, families, caregivers, and children (acpha, 2019; sistovaris et al., 2020). the fact that there is no disaggregated data on child abuse among the black population in canada doesn't prove that the abuse has not occurred. therefore, lack of race-based data in canada on child and youth is worrying given that children and youth from the black, indigenous people of color (bipoc) are over-represented in the welfare system and tend to live in economically challenged communities, which some have equated to racism spanning from slavery (ontario human rights commission, 2018). thus, collecting racebased data beyond binary 'white' and 'bipoc' identities is necessary to address these inequalities. varying educational opportunities the covid-19 pandemic has also exacerbated the academic gap in canada. although the proportion of women with post-secondary education has increased, black men have experienced a decrease in completion of post-secondary education since 2011(statistics canada, 2017). similarly, black youth are most likely to be streamed into special education and applied programs compared to white youth (robson et al., 2018). therefore, pandemic increased the vulnerability of black children and youth in education inequities. the shift to online learning disadvantaged black children and youth already facing inadequate internet connections and access to technology (auxier & anderson, 2020). children and youth who lack an internet connection or internet-enabled computer to access classes are significantly disadvantaged. according to a report published by statistics canada (2020b), most households in canada with children under 18 have internet access. however, lowerincome families have fewer internet-enabled devices per household member (frenette et al., 2020). the majority (63%) of households in the lowest income quartile had less than one device, whereas this value was 52% for the highest quartile. lower-income families rely more on mobile devices to access the internet than higher-income households (frenette et al., 2020). reduced access to the internet means that children and youth may fall behind academically. similarly, the shift to virtual education also interfered with children's learning with special needs. in a survey completed by caregivers/parents of children with attention-deficit/hyperactivity disorder (adhd), 59% reported their child's experience adjusting to online classes was 'very challenging' (hai et al., 2021). parents reported their children received less than the typical 5.5 hours of instruction from the teacher per day during the covid-19 pandemic; specifically, 41% of students received less than 5 hours instruction hours per week and 36% received 510 hours per week, and over 60% of the parents reported finding it difficult to sustain the routine with their children (hai et al., 2021). further, the gaps in skill performance between low-income families and students from higher-income families widen during school holidays (van lacker & parolin, 2020). black parents in canada work in frontline jobs and are unable to work from home (statistics canada, 2017). plus, significant proportion of black people face multi-layered vulnerabilities, including risky employment (e.g., as essential, and frontline workers), making it difficult for them to stay at home as they must work for income (gaynor & wilson, 2020). therefore, with school closures, children and youth learning would mostly be left unsupervised. for instance, a study that examined the understanding of covid-19 risks and vulnerabilities among black communities in america found that lack of parental academic supervision leaves children and youth less supported and exacerbates existing disparities in academic achievement caused by systemic racism (poteat et al., 2020). the burden of education among low-income families who cannot afford a tutor falls on the parents or older siblings (if the parents are either illiterate or must work) (poteat et al., 2020). further, some black parents reported they received little to no information about remote learning resources during ihtp, 2(1), 118-128 2022 cc by-nc-nd 4.0 issn 2563-9269 124 the pandemic and could not supervise their children academically (poteat et al., 2020). the pandemic has forced the education system to adapt to a new reality. hence ensuring equitable access to education would minimize barriers to inclusion among the children and youth. understanding and acting on the existence of antiblack racism in classrooms or education platforms are integral in children and youth mental health. given that education intersects with other social determinants of health such as race and environment, it is crucial to ensure activities geared to closing the gap on the loss of learning due to the pandemic, address these intersecting factors and provide safe spaces for black children and youth. implications for practice and research for culturally appropriate care to be effectively provided to distinct populations such as black children and youth, there is need for healthcare professionals to understand the different identities that position black children and youth within society by evoking an intersectionality lens (van herk et al., 2011). to achieve this, healthcare professionals must consider how intersecting factors (individual, societal, and structural) such as gender, socio-economic status, geographical location, age, and race intersect to determine their own existence, as well as the existence of black children and youth, in any given environment. considering these intersecting issues will allow healthcare professionals to develop knowledge, skills, and attitudes towards identifying individual and structural context-specific opportunities that promote the health outcomes of children and youth through compassionate and competent care. hence, the need for efforts from the organizations to train staff on racial equity to reduce bias in health organizations (sukhera et al., 2020) and promote critical thinking beyond the binaries of gender (male/female), race (black/white), socioeconomic status, and geographical locations. healthcare professionals need to critically examine power structures that shape healthcare encounters and develop context-specific interventions within organizational and structural policies (van herk et al., 2011). similarly, research that employs an intersectionality lens will provide a more critically informed analysis of disparities while responding to issues of social injustices by examining dynamics of differences and sameness (cho et al., 2013; van herk et al., 2011). thus, interdisciplinary collaborative research inquiries that engage canadian black children and youth would promote an integrated knowledge translation approach given the disparities exacerbated by the covid-19 pandemic. conclusion this review highlights the existing disparities between black and non-black populations in social determinants of health, including structural inequalities and discrimination, that contribute to the disproportionate risk and differential outcomes on the well-being of the black people during the covid19 pandemic (chung et al., 2020). the covid-19 pandemic has increased these inequities and exacerbated underlying vulnerabilities experienced by black children and youth. school closures during the covid-19 pandemic widened the inequality gap in education outcomes for those living in precarity. black children and youth are significantly disadvantaged due to systemic racism, and living in high-density, predominantly black communities made social distancing challenging and increased potential exposures to the virus. race and racism are significant determinants of poor educational outcomes, emotional well-being, mental health, and overall trajectories in black children and youth (codjoe, 2001). racism is also a barrier to good education and healthcare access to black children and youth (bernard & smith, 2018; salami et al., 2020). furthermore, disproportionate impacts of covid19 on communities, such as those with large black populations, and the pandemic exposed weaknesses in the canadian health system, such as a shortage of healthcare providers, essential intensive care equipment, and basic personal protective equipment. these are issues nurses can focus on, ensuring policies and processes are in place to prevent further adverse effects post-covid-19. as such, there is an urgent need for multifaceted interventions that address disparities in social determinants of health and psychosocial needs of black children and youth. primary research that addresses the effects of the covid-19 pandemic on ihtp, 2(1), 118-128 2022 cc by-nc-nd 4.0 issn 2563-9269 125 black children and youth is necessary to help create context-specific interventions, such as increasing school technological infrastructure to help with remote learning. it is also essential to build support systems for black children and youth by including their voices, families, and expert stakeholders. policies and programs geared toward building the capacity of black children and youth may contribute to closing the intellectual gap and systematically reducing health inequities during and after the pandemic (clawson et al., 2021). of importance, there is greater need to engage the children and youth throughout the policy development, implementation, and evaluation. references african canadian civic engagement council & innovative research group (2020, september). impact of covid-19. black canadian perspectives. https://innovativeresearch.ca/wpcontent/uploads/2020/09/accec01release-deck.pdf alliance for child protection in humanitarian action (acpha). (2019). technical note: protection of children during the coronavirus pandemic, version 1. (march). pages 1-2. https://alliancecpha.org/system/tdf/library/ attachments/the_alliance_covid_19_brief _version_1.pdf?file=1&type=node&id=3718 4 auxier, b., & anderson, m. (2020, march 16). as schools close due to the coronavirus, some u.s. students face a digital ‘homework gap’. pew research center. https://www.pewresearch.org/facttank/2020/03/16/as-schools-close-due-tothe-coronavirus-some-u-s-students-face-adigital-homework-gap/ bandi, s., nevid, m. z., mahdavinia, m., & genuneit, j. (2020). african american children are at higher risk of covid‐19 infection. pediatric allergy and immunology, 31(7), 861–864. https://doi.org/10.1111/pai.13298 bergen, r. (2021, july 5). manitoba must shift vaccine strategy to ensure bipoc people protected. cbc news. https://www.cbc.ca/news/canada/manitob a/covid-19-vaccine-manitoba-bipoc-blackindigenous-people-of-colour-1.6090624 bernard, w.t., and smith, h. (2018). injustice, justice, and africentric practice in canada. canadian social work review. 35 (1). https://id.erudit.org/iderudit/1051108ar. bhatia, r.s., falk, w., jamieson, t., piovesan, c., shaw, j... (2020, april 7). virtual health care is having its moment – rules will be needed. c.d. howe institute intelligence memo. https://www.cdhowe.org/intelligencememos/bhatia-falk-jamieson-piovesanshaw-%e2%80%93-virtual-healthcarehaving-its-moment-rules>. bowden, o., & cain, p. (2020, june 2). black neighbourhoods in toronto are hit hardest by covid-19 and it it’s “anchored in racism”: experts. global news. https://globalnews.ca/news/7015522/black -neighbourhoods-toronto-coronavirusracism/ brooks, s. k., webster, r. k., smith, l. e., woodland, l., wessely, s., greenberg, n., & rubin, g. j. (2020). the psychological impact of quarantine and how to reduce it: rapid review of the evidence. lancet (london, england), 395(10227), 912–920. https://doiorg.login.ezproxy.library.ualberta.ca/10.101 6/s0140-6736(20)30460-8 campbell, c. (2021, january 31). ‘they’re struggling behind closed doors’: doctors reveal disturbing stories of child maltreatment amid pandemic. global news. https://globalnews.ca/news/7611195/doct ors-reveal-stories-child-maltreatmentcoronavirus-pandemic/ canadian centre for child protection (2021). child protection organizations calls for need to modernize safeguarding structures in education system; government-mandated child sexual abuse prevention program step in right direction. accessed from: https://www.protectchildren.ca/en/pressand-media/news-releases/2021/ cho, s., crenshaw, k. w., & mccall, l. (2013). toward a field of intersectionality studies: theory, applications, and praxis. signs: journal of women in culture and society, 38(4), 785– 810. https://doi.org/10.1086/669608 chung, r. y.-n., dong, d., & li, m. m. (2020). socioeconomic gradient in health and the covid-19 outbreak. bmj, 369, m1329– m1329. https://doi.org/10.1136/bmj.m1329 ihtp, 2(1), 118-128 2022 cc by-nc-nd 4.0 issn 2563-9269 126 clawson, a. h., nwankwo, c. n., blair, a. l., pepperdavis, m., ruppe, n. m., & cole, a. b. (2021). covid-19 impacts on families of color and families of children with asthma. journal of pediatric psychology, 46(4), 378-391. doi:10.1093/jpepsy/jsab021 codjoe, h. m. (2001). fighting a “public enemy” of black academic achievement—the persistence of racism and the schooling experiences of black students in canada. race ethnicity and education, 4(4), 343–375. https://doi.org/10.1080/136133201200966 52 collins, p. h., & blige, s. (2016). intersectionality. malden, ma: polity press. conrad-hiebner, a. & byram, e. (2020). the temporal impact of economic insecurity on child maltreatment: a systematic review. trauma, violence & abuse, 21(1): 157-178. conroy, s. (2021, march 2). family violence in canada: a statistical profile, 2019. statistics canada. https://www150.statcan.gc.ca/n1/en/catalo gue/85-002-x202100100001 cost, k. t., crosbie, j., anagnostou, e., birken, c. s., charach, a., monga, s., kelley, e. et al., (2021). mostly worse, occasionally better: impact of covid-19 pandemic on the mental health of canadian children and adolescents. european child & adolescent psychiatry. https://doi.org/10.1007/s00787-021-017443 crenshaw, k. (1989). demarginalizing the intersection of race and sex: a black feminist critique of anti-discrimination doctrine, feminist theory and anti-racist politics. university of chicago legal forum, (1), 139-167. crenshaw, k. (1991). mapping the margins: intersectionality, identity politics, and violence against women of color. stanford law review, 43(6), 1241-1299. doi:10.2307/1229039 dove, j., gage, a., kriz, p., tabaddor, r. r., & owens, b. d. (2020). covid-19 and review of current recommendations for return to athletic play. rhode island medical journal, 103(7), 15–20. etowa, j., sano, y., hyman, i., dabone, c., mbagwu, i., ghose, b., osman, m., mohamoud, h. (2021). difficulties accessing health care services during the covid-19 pandemic in canada: examining the intersectionality between immigrant status and visible minority status. international journal of equity health 20, 255. https://doi.org/10.1186/s12939-021-015931 fante-coleman, t., & jackson-best, f. (2020). barriers and facilitators to accessing mental healthcare in canada for black youth: a scoping review. adolescent research review, 5, 115–136. https://doi.org/10.1007/s40894-020-001332 frenette, m., frank, k., & deng, z. (2020, april 15). school closures and the online preparedness of children during the covid-19 pandemic. statistics canada. https://www150.statcan.gc.ca/n1/pub/11626-x/11-626-x2020001-eng.htm gallagher-mackay, k., srivastava, p., underwood, k., dhuey, e., mccready, l., born, k., maltsev, a. et al (2021). covid-19 and education disruption in ontario: emerging evidence on impacts. law and society faculty publications. https://scholars.wlu.ca/laso_faculty/1 gaynor, t. s., & wilson, m. e. (2020). social vulnerability and equity: the disproportionate impact of covid‐19. public administration review, 80(5), 832–838. https://doi.org/10.1111/puar.13264 gerster j. (2020, april 7). when home isn't safe: how coronavirus puts neighbours on front lines of abuse? global news. https://globalnews.ca/news/6723582/coro navirus-domestic-abuse/ greenhalgh, t., wherton, j., shaw, s., & morrison, c. (2020). video consultations for covid-19. bmj (clinical research ed.), 368, m998. https://doi.org/10.1136/bmj.m998 gruber, j., prinstein, m., clark, l., rottenberg, j., abramowitz, j., albano, a., aldao, a., borelli, j. et al. (2021). mental health and clinical psychological science in the time of covid19. american psychologist, 76 (3), 409-426. doi: 10.1037/amp0000707. guerrero, m. d., vanderloo, l. m., rhodes, r. e., faulkner, g., moore, s. a., & tremblay, m. s. (2020). canadian children's and youth's adherence to the 24-h movement guidelines during the covid-19 pandemic: a decision tree analysis. journal of sport and health science, 9(4), 313-321. doi: ihtp, 2(1), 118-128 2022 cc by-nc-nd 4.0 issn 2563-9269 127 https://doiorg.login.ezproxy.library.ualberta .ca/10.1016/j.jshs.2020.06.005 hai, t., swansburg, r., macmaster, f., lemay, j. (2021). impact of covid-19 on educational services in canadian children with attentiondeficit/hyperactive disorder. frontiers in education. https://doi.org/10.3389/feduc.2021.614181 kang, k. t., & jaine, n. (2020). child abuse and neglect in the covid-19 era: a primer for front-line physicians in british columbia. bc medical journal 62(7), 238-240. lasselin, j., alvarez-salas, e., & grigoleit, j. (2016). well-being and immune response: a multisystem perspective. current opinion in pharmacology, 29, 34-41. doi: 10.1016/j.coph.2016.05.003 lee, j. (2020). mental health effects of school closures during covid-19. the lancet. child & adolescent health, 4(6), 421. https://doi.org/10.1016/s23524642(20)30109-7 lucente, g., kurzawa, j., & danseco, e. (2021). moving towards racial equity in the child and youth mental health sector in ontario, canada. administration and policy in mental health and mental health services research, 49(2), 153–156. https://doi.org/10.1007/s10488021-01153-3 millett, g. a., jones, a. t., benkeser, d., baral, s., mercer, l., beyrer, c., honermann, b., lankiewicz, e., mena, l., crowley, j. s., sherwood, j., & sullivan, p. s. (2020). assessing differential impacts of covid-19 on black communities. annals of epidemiology, 47, 37–44. https://doiorg.proxy.bib.uottawa.ca/10.1016/j.annepi dem.2020.05.003 moore, s. a., faulkner, g., rhodes, r. e., brussoni, m., chulak-bozzer, t., ferguson, l. j., mitra, r., o’reilly, n., spence, j. c., vanderloo, l. m., & tremblay, m. s. (2020). impact of the covid19 virus outbreak on movement and play behaviours of canadian children and youth: a national survey. the international journal of behavioral nutrition and physical activity, 17(1), 85–85. https://doi.org/10.1186/s12966-020-009878 morissette, r., turcotte, m., bernard a., olson, e. (2021, june 2). workers receiving payments from the canada emergency response benefit program in 2020. statistics canada. https://www150.statcan.gc.ca/n1/pub/4528-0001/2021001/article/00021-eng.htm nicholson, n. r. (2012). a review of social isolation: an important but underassessed condition in older adults. the journal of primary prevention, 33(2-3), 137–152. https://doi.org/10.1007/s10935-012-0271-2 oberle, e., ji, x. r., kerai, s., guhn, m., schonertreichl, k. a., gadermann, a. m. (2020). screen time and extracurricular activities as risk and protective factors for mental health in adolescence: a population-level study. preventive medicine, (141): 106291. https://doi.org/10.1016/j.ypmed.2020.1062 91 owusu-bempah, a., jung, m., sbaï, f., wilton, a. s., & kouyoumdjian, f. (2021). race and incarceration: the representation and characteristics of black people in provincial correctional facilities in ontario, canada. race and justice. https://doi.org/10.1177/215336872110064 61 patrick, s. w., henkhaus, l. e., zickafoose, j. s., lovell, k., halvorson, a., loch, s., letterie, m., & davis, m. m. (2020). well-being of parents and children during the covid-19 pandemic: a national survey. pediatrics (evanston), 146(4), e2020016824–. https://doi.org/10.1542/peds.2020-016824 peterman, a., potts, a., o’donnell, m., et al. (2020). pandemics and violence against women and children. cgd working paper 528. washington, dc: center for global development. www.cgdev.org/sites/default/files/pandemi cs-and-vawg-april2.pdf. poteat, t., millett, g. a., nelson, l. e., & beyrer, c. (2020). understanding covid-19 risks and vulnerabilities among black communities in america: the lethal force of syndemics. annals of epidemiology, 47, 1–3. https://doi.org/10.1016/j.annepidem.2020. 05.004 powers, a., stevens, j. s., o'banion, d., stenson, a. f., kaslow, n., jovanovic, t., & bradley, b. (2020). intergenerational transmission of risk for ptsd symptoms in african american children: the roles of maternal and child https://doi.org/10.1007/s10488-021-01153-3 https://doi.org/10.1007/s10488-021-01153-3 ihtp, 2(1), 118-128 2022 cc by-nc-nd 4.0 issn 2563-9269 128 emotion dysregulation. psychological trauma: theory, research, practice, and policy. doi: http://dx.doi.org.proxy.bib.uottawa.ca/10.1 037/tra0000543 public health ontario (2020). addressing health inequities within covid-19 public health response. https://www.publichealthontario.ca//media/documents/ncov/he/2020/12/covid -19-environmental-scan-addressing-healthinequities.pdf?la=en robson, k., anisef, p., brown, r., george, r. (2018). underrepresented students and the transition to postsecondary education: comparing two toronto cohorts. canadian journal of higher education, 48(1), 39-59. doi: https://doi.org/10.7202/1050841ar rothe, d., gallinetti, j., lagaay, m., & campbell, l. (2015). ebola: beyond the health emergency. plan international; monrovia, liberia: 2015. https://planinternational.org/publications/ebolabeyond health%c2%a0emergency#downloadoptions salami, b., salman, j., okeke-ihejirika, p., jackson, m., harvey-blankeship, m. (2020). a participatory action research project to promote the mental health of african, black, and caribbean youth in alberta. https://policywise.com/wpcontent/uploads/resources/2020/03/202003mar-24-final-report-17sm-salami_.pdf sistovaris, m., fallon, b., miller, s., et al. (2020). child welfare and pandemics: literature scan. toronto, ontario: policy bench, fraser mustard institute of human development, university of toronto; 2020. https://cwrp.ca/sites/default/files/publicati ons/child%20welfare%20and%20pandemic s%20literature%20scan_2020_0.pdf. soucheray, s. (2020). us blacks 3 times more likely that whites to get covid-19. center for infectious diseases research and policy. https://www.cidrap.umn.edu/newsperspective/2020/08/us-blacks-3-timesmore-likely-whites-get-covid-19 statistics canada. (2020a). crowdsourcing: impacts of covid-19 on canadians’ experiences of discrimination public use microdata file. https://www150.statcan.gc.ca/n1/en/catalo gue/45250008?hpa=1 statistics canada. (2020b). food insecurity during the covid-19 pandemic, may 2020. ottawa: statistics canada. https://www150. statcan.gc.ca/n1/pub/45-280001/2020001/article/00039-eng.htm tremblay, m. s., carson, v., chaput, j. p., connor gorber, s., dinh, t., duggan, m., faulkner, g., gray, c. e., gruber, r., janson, k., janssen, i., katzmarzyk, p. t., kho, m. e., latimercheung, a. e., leblanc, c., okely, a. d., olds, t., pate, r. r., phillips, a., poitras, v. j., … zehr, l. (2016). canadian 24-hour movement guidelines for children and youth: an integration of physical activity, sedentary behaviour, and sleep. applied physiology, nutrition, and metabolism = physiologie applique, nutrition et metabolisme, 41(6 suppl 3), s311–s327. https://doi.org/10.1139/apnm-2016-0151 tulchin-francis, k., stevens, w., gu, x., zhang, t., roberts, h., keller, j., dempsey, d., borchard, j., jeans, k., & vanpelt, j. (2021). the impact of the coronavirus disease 2019 pandemic on physical activity in u.s. children. journal of sport and health science, 10(3), 323–332. https://doi.org/10.1016/j.jshs.2021.02.005 van herk ka, smith d, & andrew c. (2011). examining our privileges and oppressions: incorporating an intersectionality paradigm into nursing. nursing inquiry, 18(1), 29–39. https://doiorg.login.ezproxy.library.ualberta.ca/10.111 1/j.1440-1800.2011.00539.x van lancker, w., & parolin, z. (2020). covid-19, school closures, and child poverty: a social crisis in the making. the lancet, public health, 5(5), e243–e244. https://doi.org/10.1016/s24682667(20)30084-0 wadhera, r. k., wadhera, p., gaba, p., figueroa, j. f., joynt maddox, k. e., yeh, r. w., & shen, c. (2020). variation in covid-19 hospitalizations and deaths across new york city boroughs. jama, 323(21), 2192–2195. https://doi.org/10.1001/jama.2020.7197 world health organization (2022). who coronavirus (covid-19) dashboard. accessed from: https://covid19.who.int/ 341 ihtp, 2(3), 341-351, 2022 cc by-nc-nd 4.0 issn 2563-9269 the relationship between electronic health literacy and individual factors among adults with chronic pain: a cross-sectional study geraldine martorella1, hye jin park1, glenna schluck1 1college of nursing, florida state university, united states of america corresponding author: g. martorella (gmartorella@fsu.edu) abstract introduction: chronic pain requires individuals to develop self-management skills that rely on health literacy and, more recently, ehealth literacy. very few studies have investigated potential predictors of ehealth literacy in chronic pain patients. therefore, the purpose of this study is to explore potential predictors of ehealth literacy among individual characteristics and pain-related clinical factors, as a preliminary step to understanding the multi-variable relationships that could be examined in a larger study. methods: a cross-sectional online survey was distributed to adults living in the united states with various chronic pain conditions using amazon’s mechanical turk. a convenience sample of 196 participants was recruited. the independent variables of interest regarding their relationship with ehealth literacy (dependent variable) included demographics, health literacy, chronic pain severity, pain attitudes and coping skills. chi square tests of association, and independent samples t-tests were used to examine the bivariate relationships. results: the majority of the sample suffered from chronic pain for more than 2 years with 48% suffering from chronic back pain. most of the sample (n=184, 93.9%) had high ehealth literacy. significant relationships were found between ehealth literacy and the following variables: marital status, education level, and age, as well as health literacy, chronic pain interference with activities and chronic pain attitudes. these warrant further exploration in a larger study using logistic regression. conclusions: our findings provide new information on the relationship between ehealth literacy levels, pain-related individual factors such as attitudes toward pain, and clinical outcomes, i.e., pain interference with physical and psychological function. although further research is needed to investigate ehealth literacy predictors and mediators, these findings promote the evidencebased development and evaluation of interventions enhancing ehealth literacy skills, as well as self-management skills of chronic pain patients. keywords chronic pain, ehealth literacy, health literacy, pain management, self-management introduction chronic pain, an increasing health problem among the most common reasons adults seek healthcare (dahlhamer et al., 2018; zelaya et al., 2020), requires individuals to develop and use self-management skills on a daily basis to help deal with their pain. in order to develop these skills, individuals need to go through an educational process (lefort, 2021). different key tasks have been identified as being part of the development of self-management skills, including one that is central using appropriate resources and managing decisions regarding different treatment approaches (bodenheimer et al., 2002). these tasks depend to a certain extent on the level of health literacy. indeed, health literacy is defined as “the degree to which individuals have the ability to find, understand, and use information and services to mailto:gmartorella@fsu.edu 342 ihtp, 2(3), 341-351, 2022 cc by-nc-nd 4.0 issn 2563-9269 inform health-related decisions and actions for themselves and others” (santana et al., 2021). given the widespread importance of the internet in our lives, independent of socioeconomic status, and the increased access to a considerable amount of information, electronic health literacy (i.e., ehealth literacy) has consequently become an important aspect of self-management skills (chesser et al., 2016; kim & xie, 2017; watkins & xie, 2014). a survey regarding electronic health behaviors conducted in the united states among adults with a chronic disease reported that 75% of respondents were using the web to obtain health information (madrigal & escoffery, 2019). another study focused on individuals suffering from various chronic pain conditions reported that 70% of its participants were using internet actively to find health-related information (castarlenas et al., 2021). ehealth literacy, therefore, is the ability to seek, find, understand, and appraise health information from electronic resources and apply such knowledge to address or solve a health problem (norman & skinner, 2006a, 2006b). moreover, more and more healthrelated interventions are provided over the web, an outcome of the covid-19 pandemic. ehealth literacy level then becomes a variable that will determine the capacity to manage pain and its multidimensional impact. nevertheless, a systematic review underlined that ehealth literacy is generally not considered in developing ehealth interventions for socially disadvantaged and underserved groups (e.g., older age, less education, lower income, being from an ethnic minority group, or living in a remote area), and, unsurprisingly, evidence on the effectiveness of these interventions in these groups is inconclusive (cheng et al., 2020). ehealth literacy is more important for underserved communities such as people living in rural areas as they do not have access to high quality pain management resources and may use online resources to fill this gap (demonte et al., 2015). however, some resources such as individual blogs or forums may circulate false or misleading information that potentially influences the views of the population consuming this information (stellefson et al., 2011). misinformation can also lead to inaccurate self-diagnosis and/or potentially ineffective or dangerous treatments (honey, 2010). the consequences can be grave if health information is inaccurate or misleading and leads to poor decisions about how to manage a health problem and when to seek professional help. increasing ehealth literacy levels may empower people accessing various websites when making choices about the management of their pain (demonte et al., 2015). health literacy and ehealth literacy have shown to be related and to influence outcomes for individuals living with chronic conditions (neter, 2019; stellefson et al., 2019). we previously examined the level of ehealth literacy in a sample of people living with chronic pain and found that it was quite high and that some components of health literacy, e.g.., appraisal of health information and ability to find good health information, influenced ehealth literacy levels in this population (park, 2021). thus, a logical extension of this research is to determine what factors are associated with ehealth literacy in this population. recently, two studies found that self-efficacy was influencing ehealth literacy in individuals with chronic back pain and various other chronic pain-related conditions (castarlenas et al., 2021; rabenbauer & mevenkamp, 2021). a study conducted in patients with various chronic conditions living in a low-income country (i.e., ethiopia) concluded that higher education, living in an urban area, perceived good health status, higher income, daily internet use, good knowledge of availability and importance of online resources, positive attitude toward those resources and higher level of computer literacy were predictors positively associated with higher ehealth literacy level (shiferaw et al., 2020). last, a study focused on people with cardiovascular disease showed that although age and education level may play a role, only the time spent on the internet contributed to their level of ehealth literacy (richtering et al., 2017). to our knowledge, very few studies specifically examined the contributing factors to ehealth literacy in chronic pain patients. therefore, the purpose of this study is to explore potential predictors of ehealth literacy among individual characteristics and painrelated clinical factors (demographics, health literacy, chronic pain severity, pain attitudes and coping skills), as a preliminary step to understanding the multivariable relationships that could be examined in a 343 ihtp, 2(3), 341-351, 2022 cc by-nc-nd 4.0 issn 2563-9269 larger study. this will allow us to understand how individuals with high levels of ehealth literacy are different from individuals with low levels of ehealth and to develop strategies and specific interventions for enhancing ehealth literacy skills and/or usability of web-based information and ehealth interventions for adults with chronic pain. methods study design and procedure a cross-sectional online survey was distributed to adults living in the united states (us) with various chronic pain conditions using amazon’s mechanical turk (mturk). more details regarding the methods and procedures are provided in our previous paper describing the primary study focused on health and ehealth literacies (park, 2021). mturk is helpful in reaching populations that are typically underrepresented through traditional recruitment techniques (chandler & shapiro, 2016) while still obtaining reliable and valid responses (goodman, 2013), all of which we found beneficial in the context of this study since underserved populations will be even more likely to use the internet to find healthrelated information. participants and ethics a convenience sample of 196 participants was recruited based on the sample size needed for the primary study (park, 2021). participants in this study were eligible if they: 1) were u.s. residents, 2) had a history of at least a 90% task approval rate for their previous participation in studies using mturk as indicated in the platform, 3) reported having pain for at least three months, 4) were able to complete a questionnaire in english, and 5) had access to an electronic device and internet to complete the survey. after obtaining ethical approval from the university’s institutional review board (irb), the survey offer was posted on mturk. respondents were redirected to a link of the informed consent. by starting the survey, the participants were agreeing to participate. respondents received $2.00 in compensation after completing the survey. data collection ehealth literacy the ehealth literacy scale, eheals, was used (norman & skinner, 2006a). eheals is a 8-item selfreport questionnaire that focuses on knowledge and understanding of what health information is available on the internet, how to use the internet, where one can find helpful health resources, how to access this information, the skills to evaluate the online health information, and the ability to discern reliable health resources on the internet. each item is rated on a five point-likert scale ranging from 1 (strongly disagree) to 5 (strongly agree). total scores of the eheals are summed to range from 8 to 40, with higher scores representing higher self-perceived ehealth literacy. good internal consistency reliability along with good test-retest reliability have been reported (norman & skinner, 2006a). two supplemental items recommended by the authors of eheals, using a similar 5-point likert scale, were included in order to assess perceived usefulness of the internet for making health decisions and perceived importance of being able to access health resources on the internet for a total of 10 items. health literacy the health literacy questionnaire (hlq) was also used (osborne et al., 2013). this instrument focuses on health literacy strengths and weaknesses. the hlq includes 9 subscales for a total of 44 items. each subscale provides a score. four out of nine subscales that are specifically related to the ability to find, appraise, understand and use health information (subscales #2 [having sufficient information to manage my health, 4 items], #5 [appraisal of health information, 5 items], #8 [ability to find good health information, 5 items], #9 [understanding health information, 5 items]) were used for a total of 19 items. the hlq has been shown to have strong psychometric properties with cronbach’s alpha >0.8 for all scales (osborne et al., 2013). chronic pain severity the brief pain inventory (bpi) was used to assess chronic pain severity (cleeland & ryan, 1994). the bpi 344 ihtp, 2(3), 341-351, 2022 cc by-nc-nd 4.0 issn 2563-9269 includes 10 items with numeric rating scales: three items focus on pain intensity, i.e., at rest, on average, worst (0 for “no pain” to 10 for “worst possible pain”), and seven evaluate the impact of pain on general activity, mood, walking, work, relationships, sleep and enjoyment of life with the anchors being “does not interfere” (0) and “completely interferes” (10). participants were asked to base their ratings on their pain experience in the previous seven days. each item represents a subscale and can be scored and analyzed individually. the bpi has shown internal consistency, reliability and validity across cultures and settings (cleeland & ryan, 1994). coping skills and pain attitudes short forms of the chronic pain coping inventory (cpci) (jensen et al., 1995) and the survey of pain attitudes (sopa) (jensen et al., 1994) were utilized. the short forms of these questionnaires have demonstrated validity and are adequate for studies with larger samples (jensen et al., 2003). the cpci short form includes 8 items, which refer to the following subscales: guarding, resting, asking for assistance, relaxation, task persistence, exercise/stretch, seeking and coping self-statements. the scores on each item represents the score on the subscale. the sopa short form includes 7 items, which refer to the following subscales: pain control, disability, harm, emotion, medication, solicitude, and medical cure. thus, scores on each item represent the score on the subscale. of note, given the negative wording of items 1 and 2, their score needs to be reversed before analysis to reflect the appropriate scoring direction. data analysis the purpose of this secondary analysis was to examine the bivariate relationships between ehealth literacy and the various demographics and characteristics of chronic pain as a preliminary step to understanding the multi-variable relationships that could be examined in a larger study powered for such an analysis. chi square tests of association, and independent samples t-tests were used to examine the bivariate relationships. since this analysis was not the primary objective of the study (park, 2021), we do not have sufficient power for a more in-depth analysis using logistic regression. thus, the required sample size for an independent samples t-test is 51 per group (102 total) assuming equal group allocation, moderate effect size, 80% power, and 5% probability of making a type i error. although no formal cutoff has been established for the eheals, a cutoff was set at 26 (high [eheals<26] vs. low [eheals≥26]) based on several studies with similar populations, i.e., adults with chronic disease (choi & dinitto, 2013; milne et al., 2015; neter & brainin, 2012; richtering et al., 2017; tennant et al., 2015). we favored this approach over an artificial categorization based on median splits as this strategy has been criticized for the risk of increasing type i and type ii errors, especially when a sample varies on the distribution of the measure (decoster, 2011; mcclelland, 2015). the independent variables of interest were demographics (gender, ethnicity, marital status, work status, education level, health literacy, location of chronic pain, and duration of chronic pain), chronic pain severity (bpi: average intensity and interference), chronic pain attitudes (sopa – 7 subscales), and chronic pain coping skills (cpci – 8 subscales). given our previous results with health literacy (park, 2021), we also included health literacy as an independent variable in our analysis. all demographic variables with multiple response options were dichotomized for analysis purposes. for instance, work status was categorized as “working full time” vs “not working full time”. results demographic characteristics and levels of ehealth literacy sociodemographic characteristics for the sample as a whole are presented in our previous paper (park, 2021). the majority of the sample suffered from chronic pain for more than 2 years with 48% suffering from chronic back pain. most of the sample (n=184, 93.9%) had high ehealth literacy. there were no statistical differences in the demographics among the low ehealth literacy and high ehealth literacy groups (table 1) although there were some notable differences in the sample demographics. a higher percentage of participants with low ehealth literacy are white or married compared to those with high 345 ihtp, 2(3), 341-351, 2022 cc by-nc-nd 4.0 issn 2563-9269 ehealth literacy. a higher percentage of participants with high ehealth literacy work full-time, report shorter durations of chronic pain, and have more education compared to those with low ehealth literacy (table 1). relationships and potential predictors among demographic and clinical characteristics psychometrics and summary statistics (min, median, mean, max, and standard deviation) computed from the total sample have been previously reported (park, 2021). only scales/subscales with more than one item were assessed for internal consistency. the bpi showed good internal consistency in this study (cronbach’s alpha=.91). table 2 displays the valid sample size, mean, and standard deviation for each scale reported by ehealth literacy level along with the p-value for an independent-samples t-test. note that p-values less than .002 are statistically significant at a family-wise error rate of .05. no variables have statistically significant differences among groups given this threshold. participants with low ehealth literacy have slightly less favorable outcomes (such as increased pain intensity and interference or decreased health literacy) than those with high ehealth literacy. because the purpose of this study is to examine bivariate relationships as a preliminary step to a larger study examining a full logistic regression model, logistic regression model building guidelines proposed by hosmer and lemeshow (2000) are considered. variables with bivariate relationship (pvalues <.25) should be included for consideration in a logistic regression model in addition to other variables identified through literature and subject matter expertise. therefore, among demographics, marital status, education level, and age warrant further exploration in a larger study using logistic regression, as well as health literacy (hlq subscales: having sufficient information, critical appraisal, and finding good health information), chronic pain severity (bpi: interference), chronic pain attitudes (sopa: pain control, disability, and medical cure), and chronic pain coping skills (cpci: muscle relaxation). discussion ehealth literacy is an important component of selfmanagement for people with chronic conditions. this study is one of the few examining sociodemographic and clinical factors in relation to the level of ehealth literacy and is the first to explore the contribution of chronic pain attitudes and coping skills. most of participants (94%, n=184) had high ehealth literacy with an eheals score of 26 or higher, which is consistent with previous studies with individuals facing chronic pain (castarlenas et al., 2021) or other chronic conditions (richtering et al., 2017). this is also consistent with participants being recruited online, thus most likely to be using internet resources. among sociodemographic data, although no statistically significant differences were found between the high and low ehealth literacy groups probably due to the unbalanced repartition of the sample between high and low levels of ehealth literacy, it was found that older age, lower education level, and being married were associated with lower levels of ehealth literacy. these converge with previous results with bivariate analyses showing that older age and lower levels of education are associated with lower ehealth literacy (richtering et al., 2017; shiferaw et al., 2020). these sociodemographic characteristics have also been recognized as contributing to the risk and maintenance of chronic pain in relation to their impact on self-efficacy and ehealth literacy (rabenbauer & mevenkamp, 2021). for instance, being married and having less education can lead to reliance on family members as opposed to developing self-efficacy skills and potentially ehealth literacy. nonetheless, regarding age more specifically, castarlenas et al. (castarlenas et al., 2021) did not find that the level of ehealth literacy was associated with age in chronic pain patients. indeed, another study with a cardiovascular population observed that this relationship seems to disappear when included in a logistic regression model to let “time spent on the internet” prevail (richtering et al., 2017). regarding clinical factors, again, although groups were not different and had similar levels of pain intensity, an association was found between the level 346 ihtp, 2(3), 341-351, 2022 cc by-nc-nd 4.0 issn 2563-9269 of ehealth literacy and pain interference with physical and psychological functions (total score). a previous study with chronic pain patients found that levels of ehealth literacy were not associated with pain interference (total score), however they were associated with anxiety and depression (castarlenas et al., 2021), which can be interpreted as proxy measures of pain interference with psychological function. these results are consistent with previous conclusions relating higher ehealth literacy to better health outcomes (xesfingi & vozikis, 2016; xie et al., 2022). in this study, we also found that ehealth literacy levels were associated with some attitudes toward pain and its control. the group with high levels of ehealth literacy scored higher on “there is little i can do to ease my pain” (pain control), lower on “my pain does not stop me from leading a physically active life” (disability) and higher on “i trust that doctors can cure my pain” (medical cure), suggesting that individuals with more negative attitudes toward pain and their ability to control it will search more information online in a quest for solutions and that this process will in turn make them develop ehealth literacy skills. however, although participants in this group reported increased levels of negative attitudes toward pain and its control, they seemed to experience less interference of pain. this might be partially explained by self-efficacy. self-efficacy has been found to help explain the benefits of ehealth literacy in chronic pain patients and other populations with chronic conditions (castarlenas et al., 2021; choi, 2020; rabenbauer & mevenkamp, 2021). for instance, castarlenas et al. (2021) found that selfefficacy fully explained the relationship between ehealth literacy and depression (i.e., psychological function). our findings then suggest that ehealth literacy, likely through self-efficacy enhancement, helps overcome the potential impact of maladaptive beliefs toward pain on clinical outcomes. limitations first, we obtained a sample with high e-health literacy and an unequal repartition of participants between the low and high ehealth literacy groups. however, studies focusing on ehealth literacy and chronic pain patients have observed high levels of ehealth literacy and ehealth use (castarlenas et al., 2021; ledel solem et al., 2019; rabenbauer & mevenkamp, 2021). moreover, the method of recruitment used in this study may have created a bias of self-selection which hinders the generalizability of our findings. another potential limitation is that the data collection relies on selfreport. lastly, although the scales used have been validated, cronbach’s alpha could not be calculated for one-item scales and a larger sample would have potentially increased their psychometric properties (jensen et al., 2003). several implications for research and practice can be suggested. our study provides some insight regarding several sociodemographic and clinical variables that deserve to be further explored in larger studies using logistic regression in order to develop a prediction model regarding ehealth literacy levels in chronic pain patients. additionally, ehealth literacy skills seem to lead to better outcomes for people living with chronic pain regardless of their attitudes toward pain. thus, beside the potential benefits on self-efficacy, it would be relevant to examine what people living with chronic pain learned by using ehealth resources. these preliminary results need to be further validated and mediators of this relationship should be explored in order to guide the development of appropriate interventions. regarding clinical practice, these findings suggest that ehealth skills are high among chronic pain patients, making ehealth platforms a promising tool to reach them, which confirms what has been clearly expressed in a qualitative study with chronic pain patients and their spouse (ledel solem et al., 2019) and that enhancing ehealth literacy skills is a relevant avenue for interventions promoting better health in chronic pain patients, which converges with another study highlighting the role of self-efficacy in this therapeutic process (castarlenas et al., 2021). conclusions this study is one of the few to provide some evidence regarding potential contributors to ehealth literacy skills in a chronic pain population and it indicates which variables warrant further study with a larger sample. it also provides new information on the 347 ihtp, 2(3), 341-351, 2022 cc by-nc-nd 4.0 issn 2563-9269 relationship between ehealth literacy levels, painrelated individual factors such as attitudes toward pain and clinical outcomes, i.e., pain interference with physical and psychological function. further research needs to address potential mediators and the development and evaluation of interventions enhancing ehealth literacy skills, as well as the development and evaluation of ehealth platforms specifically addressing the needs of chronic pain patients in terms of pain self-management. references bodenheimer, t., lorig, k., holman, h., & grumbach, k. (2002, nov 20). patient self-management of chronic disease in primary care. jama, 288(19), 2469-2475. https://doi.org/10.1001/jama.288.19.2469 castarlenas, e., sanchez-rodriguez, e., roy, r., tomepires, c., sole, e., jensen, m. p., & miro, j. (2021, nov 28). electronic health literacy in individuals with chronic pain and its association with psychological function. international journal of environmental research and public health, 18(23). https://doi.org/10.3390/ijerph182312528 chandler, j., & shapiro, d. (2016). conducting clinical research using crowdsourced convenience samples. annual review of clinical psychology, 12, 53-81. https://doi.org/10.1146/annurev-clinpsy021815-093623 cheng, c., beauchamp, a., elsworth, g. r., & osborne, r. h. (2020, aug 13). applying the electronic health literacy lens: systematic review of electronic health interventions targeted at socially disadvantaged groups. journal of medical internet research, 22(8), e18476. https://doi.org/10.2196/18476 chesser, a., burke, a., reyes, j., & rohrberg, t. (2016). navigating the digital divide: a systematic review of ehealth literacy in underserved populations in the united states. informatics for health and social care, 41(1), 1-19. https://doi.org/10.3109/17538157.2014.948171 choi, m. (2020, oct 28). association of ehealth use, literacy, informational social support, and health-promoting behaviors: mediation of health self-efficacy. international journal of environmental research and public health, 17(21). https://doi.org/10.3390/ijerph17217890 choi, n. g., & dinitto, d. m. (2013, may 2). the digital divide among low-income homebound older adults: internet use patterns, ehealth literacy, and attitudes toward computer/internet use. journal of medical internet research, 15(5), e93. https://doi.org/10.2196/jmir.2645 cleeland, c. s., & ryan, k. m. (1994, 3/1994). pain assessment: global use of the brief pain inventory. annals of the academy of medicine of singapore, 23(2), 129-138. http://www.ncbi.nlm.nih.gov/pubmed/8080219 (not in file) dahlhamer, j., lucas, j., zelaya, c., nahin, r., mackey, s., debar, l., kerns, r., von korff, m., porter, l., & helmick, c. (2018, sep 14). prevalence of chronic pain and high-impact chronic pain among adults united states, 2016. mmwr morbidity and mortality weekly report, 67(36), 1001-1006. https://doi.org/10.15585/mmwr.mm6736a2 decoster, j., gallucci, m, & iselin, am. (2011). best practices for using median splits, artificial categorization, and their continuous alternatives. journal of experimental psychopathology, 2(2), 197-209. https://doi.org/10.5127/jep.008310 demonte, c. m., demonte, w. d., & thorn, b. e. (2015). future implications of ehealth interventions for chronic pain management in underserved populations. pain management, 5(3), 207-214. https://doi.org/10.2217/pmt.15.9 goodman, j. k., cryder, c. e., & cheema, a. (2013). data collection in a flat world: the strengths and weaknesses of mechanical turk samples. journal of behavioral decision making, 26(3), 213-224. honey, m. l., bycroft, j., tracey, j., boyd, m.a., mclachlan, a. (2010). quality processes that maximise the health navigator web portal as an enabler for consumers and health professionals. health care and informatics review online 14(1), 12-18. hosmer, d., lemeshow, s. (2000). model-building strategies and methods for logistic regression. in d. hosmer, lemeshow, s (ed.), applied logistic regression, second edition. wiley & sons, inc. jensen, m. p., keefe, f. j., lefebvre, j. c., romano, j. m., & turner, j. a. (2003, aug). oneand two-item measures of pain beliefs and coping strategies. pain, 104(3), 453-469. https://www.ncbi.nlm.nih.gov/pubmed/1292761 8 https://doi.org/10.1001/jama.288.19.2469 https://doi.org/10.3390/ijerph182312528 https://doi.org/10.1146/annurev-clinpsy-021815-093623 https://doi.org/10.1146/annurev-clinpsy-021815-093623 https://doi.org/10.2196/18476 https://doi.org/10.3109/17538157.2014.948171 https://doi.org/10.3390/ijerph17217890 https://doi.org/10.2196/jmir.2645 http://www.ncbi.nlm.nih.gov/pubmed/8080219 https://doi.org/10.15585/mmwr.mm6736a2 https://doi.org/10.5127/jep.008310 https://doi.org/10.2217/pmt.15.9 https://www.ncbi.nlm.nih.gov/pubmed/12927618 https://www.ncbi.nlm.nih.gov/pubmed/12927618 348 ihtp, 2(3), 341-351, 2022 cc by-nc-nd 4.0 issn 2563-9269 jensen, m. p., turner, j. a., romano, j. m., & lawler, b. k. (1994, jun). relationship of pain-specific beliefs to chronic pain adjustment. pain, 57(3), 301-309. https://www.ncbi.nlm.nih.gov/pubmed/7936708 jensen, m. p., turner, j. a., romano, j. m., & strom, s. e. (1995, feb). the chronic pain coping inventory: development and preliminary validation. pain, 60(2), 203-216. https://www.ncbi.nlm.nih.gov/pubmed/7784106 kim, h., & xie, b. (2017, jan 28). health literacy in the ehealth era: a systematic review of the literature. patient education and counseling. https://doi.org/10.1016/j.pec.2017.01.015 ledel solem, i. k., varsi, c., eide, h., kristjansdottir, o. b., mirkovic, j., borosund, e., haaland-overby, m., heldal, k., schreurs, k. m., waxenberg, l. b., weiss, k. e., morrison, e. j., & solberg nes, l. (2019, apr 1). patients' needs and requirements for ehealth pain management interventions: qualitative study. journal of medical internet research, 21(4), e13205. https://doi.org/10.2196/13205 lefort, s., mcgillion, m. (2021). promoting chronic pain self-management education. international association for the study of pain https://www.iasp-pain.org/resources/factsheets/promoting-chronic-pain-selfmanagement-education/ madrigal, l., & escoffery, c. (2019, mar 5). electronic health behaviors among us adults with chronic disease: cross-sectional survey. journal of medical internet research, 21(3), e11240. https://doi.org/10.2196/11240 mcclelland, g., lynch jr, jg, irwin, jr, spiller, sa, & fitzsimons, g. (2015). median splits, type ii errors, and false–positive consumer psychology: don't fight the power. journal of consumer psychology, 25(4), 679-689. https://doi.org/10.1016/j.jcps.2015.05.006 milne, r. a., puts, m. t., papadakos, j., le, l. w., milne, v. c., hope, a. j., catton, p., & giuliani, m. e. (2015, dec). predictors of high ehealth literacy in primary lung cancer survivors. journal of cancer education, 30(4), 685-692. https://doi.org/10.1007/s13187-014-0744-5 neter, e., & brainin, e. (2012, jan 27). ehealth literacy: extending the digital divide to the realm of health information. journal of medical internet research, 14(1), e19. https://doi.org/10.2196/jmir.1619 neter, e., brainin, e. (2019). association between health literacy, ehealth literacy, and health outcomes among patients with long-term conditions: a systematic review. european psychologist, 24(1), 68-81. https://doi.org/10.1027/1016-9040/a000350 norman, c. d., & skinner, h. a. (2006a, nov 14). eheals: the ehealth literacy scale. journal of medical internet research, 8(4), e27. https://doi.org/10.2196/jmir.8.4.e27 norman, c. d., & skinner, h. a. (2006b, jun 16). ehealth literacy: essential skills for consumer health in a networked world. journal of medical internet research, 8(2), e9. https://doi.org/10.2196/jmir.8.2.e9 osborne, r. h., batterham, r. w., elsworth, g. r., hawkins, m., & buchbinder, r. (2013, jul 16). the grounded psychometric development and initial validation of the health literacy questionnaire (hlq). bmc public health, 13, 658. https://doi.org/10.1186/1471-2458-13-658 park, h., martorella, g., schluck, g. (2021). electronic health literacy among adults with chronic pain: a descriptive, cross-sectional survey. international health trends and perspectives, 1(3), 390-403. https://doi.org/10.32920/ihtp.v1i3.1469 rabenbauer, l. m., & mevenkamp, n. (2021, feb). factors in the effectiveness of e-health interventions for chronic back pain: how selfefficacy mediates e-health literacy and healthy habits. telemedicine and e-health, 27(2), 184192. https://doi.org/10.1089/tmj.2019.0301 richtering, s. s., hyun, k., neubeck, l., coorey, g., chalmers, j., usherwood, t., peiris, d., chow, c. k., & redfern, j. (2017, jan 27). ehealth literacy: predictors in a population with moderate-to-high cardiovascular risk. jmir human factors, 4(1), e4. https://doi.org/10.2196/humanfactors.6217 santana, s., brach, c., harris, l., ochiai, e., blakey, c., bevington, f., kleinman, d., & pronk, n. (2021, nov-dec 01). updating health literacy for healthy people 2030: defining its importance for a new decade in public health. journal of public health management and practice, 27(suppl 6), s258s264. https://doi.org/10.1097/phh.000000000000132 4 https://www.ncbi.nlm.nih.gov/pubmed/7936708 https://www.ncbi.nlm.nih.gov/pubmed/7784106 https://doi.org/10.1016/j.pec.2017.01.015 https://doi.org/10.2196/13205 https://www.iasp-pain.org/resources/fact-sheets/promoting-chronic-pain-self-management-education/ https://www.iasp-pain.org/resources/fact-sheets/promoting-chronic-pain-self-management-education/ https://www.iasp-pain.org/resources/fact-sheets/promoting-chronic-pain-self-management-education/ https://doi.org/10.2196/11240 https://doi.org/10.1016/j.jcps.2015.05.006 https://doi.org/10.1007/s13187-014-0744-5 https://doi.org/10.2196/jmir.1619 https://doi.org/10.1027/1016-9040/a000350 https://doi.org/10.2196/jmir.8.4.e27 https://doi.org/10.2196/jmir.8.2.e9 https://doi.org/10.1186/1471-2458-13-658 https://doi.org/10.32920/ihtp.v1i3.1469 https://doi.org/10.1089/tmj.2019.0301 https://doi.org/10.2196/humanfactors.6217 https://doi.org/10.1097/phh.0000000000001324 https://doi.org/10.1097/phh.0000000000001324 349 ihtp, 2(3), 341-351, 2022 cc by-nc-nd 4.0 issn 2563-9269 shiferaw, k. b., tilahun, b. c., endehabtu, b. f., gullslett, m. k., & mengiste, s. a. (2020, aug 6). ehealth literacy and associated factors among chronic patients in a low-income country: a crosssectional survey. bmc medical informatics and decision making, 20(1), 181. https://doi.org/10.1186/s12911-020-01202-1 stellefson, m., hanik, b., chaney, b., chaney, d., tennant, b., & chavarria, e. a. (2011, dec 01). ehealth literacy among college students: a systematic review with implications for ehealth education. journal of medical internet research, 13(4), e102. https://doi.org/10.2196/jmir.1703 stellefson, m., paige, s. r., alber, j. m., chaney, b. h., chaney, d., apperson, a., & mohan, a. (2019, jun 6). association between health literacy, electronic health literacy, disease-specific knowledge, and health-related quality of life among adults with chronic obstructive pulmonary disease: cross-sectional study. journal of medical internet research, 21(6), e12165. https://doi.org/10.2196/12165 tennant, b., stellefson, m., dodd, v., chaney, b., chaney, d., paige, s., & alber, j. (2015, mar 17). ehealth literacy and web 2.0 health information seeking behaviors among baby boomers and older adults. journal of medical internet research, 17(3), e70. https://doi.org/10.2196/jmir.3992 watkins, i., & xie, b. (2014, nov 10). ehealth literacy interventions for older adults: a systematic review of the literature. journal of medical internet research, 16(11), e225. https://doi.org/10.2196/jmir.3318 xesfingi, s., & vozikis, a. (2016, may 25). ehealth literacy: in the quest of the contributing factors. interactive journal of medical research, 5(2), e16. https://doi.org/10.2196/ijmr.4749 xie, l., zhang, s., xin, m., zhu, m., lu, w., & mo, p. k. (2022, apr). electronic health literacy and healthrelated outcomes among older adults: a systematic review. preventive medicine, 157, 106997. https://doi.org/10.1016/j.ypmed.2022.106997 zelaya, c. e., dahlhamer, j. m., lucas, j. w., & connor, e. m. (2020, nov). chronic pain and high-impact chronic pain among u.s. adults, 2019. nchs data brief (390), 1-8. https://www.ncbi.nlm.nih.gov/pubmed/3315114 5 https://doi.org/10.1186/s12911-020-01202-1 https://doi.org/10.2196/jmir.1703 https://doi.org/10.2196/12165 https://doi.org/10.2196/jmir.3992 https://doi.org/10.2196/jmir.3318 https://doi.org/10.2196/ijmr.4749 https://doi.org/10.1016/j.ypmed.2022.106997 https://www.ncbi.nlm.nih.gov/pubmed/33151145 https://www.ncbi.nlm.nih.gov/pubmed/33151145 350 ihtp, 2(3), 341-351, 2022 cc by-nc-nd 4.0 issn 2563-9269 table 1. participant demographics according to levels of ehealth literacy variable/level low ehealth literacy high ehealth literacy p-value n % n % gender .873 male 5 41.7 81 44.0 female 7 58.3 103 56.0 ethnicity .395 white 11 91.7 151 82.1 not white 1 8.3 33 17.9 marital status .068 married 9 75.0 88 47.8 not married 3 25.0 96 52.2 work status .391 full-time 7 58.3 129 70.1 not working full-time 5 41.3 55 29.9 education level .116 2 year degree or less 9 75.0 95 51.6 4 year degree or more 3 25.0 89 48.4 duration of chronic pain .264 < 5years 5 41.7 107 58.2 >= 5 years 7 58.3 77 41.8 location of chronic pain .884 back 6 50.0 88 47.8 other 6 50.0 96 52.2 n mean (sd) n mean (sd) age 12 46 (15.5) 184 39.7 (11.8) .079 351 ihtp, 2(3), 341-351, 2022 cc by-nc-nd 4.0 issn 2563-9269 table 2. summary statistics for each measure measure pvalue low ehealth literacy high ehealth literacy total sample n mean sd n mean sd n mean sd hlq – having sufficient information .011 12 2.50 0.46 184 2.91 0.55 196 2.89 0.55 hlq – critical appraisal .011 12 2.98 0.36 184 3.29 0.40 196 3.27 0.41 hlq – finding good health information .018 12 3.38 0.45 156 3.70 0.44 168 3.68 0.45 hlq – understanding health information .784 11 3.62 0.55 131 3.66 0.48 142 3.66 0.48 bpi – intensity (average) .812 12 5.58 1.62 184 5.46 1.79 196 4.71 2.13 bpi – interference .229 12 6.08 2.31 184 5.29 2.20 196 5.46 1.78 cpci – guarding .751 12 3.83 2.48 184 3.60 2.49 196 7.47 1.61 cpci – resting .949 12 3.33 2.61 184 3.29 2.35 196 5.34 2.21 cpci – asking for assistance .293 12 3.08 2.68 184 2.39 2.19 196 3.61 2.48 cpci – muscle relaxation .147 12 2.42 1.83 184 3.45 2.41 196 3.29 2.36 cpci – task persistence .400 12 3.42 1.73 184 3.91 1.97 196 2.43 2.22 cpci – exercise .515 12 4.08 2.19 184 3.61 2.45 196 3.39 2.39 cpci – seeking support .850 12 1.83 2.55 184 1.96 2.27 196 3.88 1.95 cpci – coping .868 12 2.83 2.62 184 3.81 2.42 196 3.64 2.44 sopa – pain control .007 12 2.08 0.67 184 2.73 1.13 196 1.95 2.28 sopa – disability .196 12 3.33 1.44 184 2.83 1.29 196 3.75 2.44 sopa – harm .300 12 3.67 0.89 184 3.38 1.19 196 2.69 1.12 sopa – emotion .452 12 3.67 0.89 184 3.46 1.21 196 2.86 1.30 sopa – medication .312 12 3.58 1.08 184 3.20 1.28 196 3.39 1.17 sopa – solicitude .572 12 4.08 0.79 184 3.91 1.05 196 3.47 1.19 sopa – medical cure .010 12 1.92 0.79 184 2.64 1.21 196 3.22 1.27 microsoft word copy edit metersky.docx ihtp, 2(3), 326-328, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 326 person-centred care and interprofessional practice through me kateryna metersky1 1daphne cockwell school of nursing, toronto metropolitan university, toronto, canada, corresponding author: k. metersky (kateryna.metersky@ryerson.ca) abstract this poetic expression piece outlines and includes the key elements of person-centred and interprofessional care vital for healthcare providers to understand and apply in their care delivery and collaboration with patients. the author uses her first had experience with being a past recipient of care as well as her research work to share a perspective, from the patient’s point of view, of what is important for patients when seeking care from a humanistic perspective. keywords care recipient; interprofessional care; person-centred care; poetic expression poetic expression i always wonder do you as my healthcare providers see me – individually and as a team? i do not mean literally see me through your eyes. i mean do you see and understand the whole me? the person that i am? the me not through my signs and symptoms, blood values or my condition, but the me as a mother, wife, nurse, professor, a global citizen? the me with my unique background, culture, language, and experiences? the me with a history, previous healthcare interactions, and health events? you each assess, question, and probe. you each expose, poke, and auscultate. you each palpate, insert, and test. you each draw-up, scan, and report. but do you collectively actually see me? the me with my own unique meaning of health, care preferences, thoughts, and opinions? the me with a voice and the desire to be more involved in my care? the me with the knowledge of self? the me that knows best what is the most ideal care plan for me? the me as a human being and not just as an object to be treated? you consult each other, discuss, and plan. you each follow care pathways, best practice guidelines, and protocols for care. you decide. you then inform me of the treatment plan that you collectively develop amongst yourselves – for me. you tell me this is the best option. you assure me that this is the path, that there is no other way. but do you collectively actually see me? do you consider the me you collectively do not see? ihtp, 2(3), 326-328, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 327 the me you did not get to know? the social aspects of me? my unique social determinants of health, specific to me? the me that is worried the scar your suggested treatment will leave will become a new part of my identity? the me that will have to live with trying to conceal this revealing aspect of me. the me that is considering how the timing of the medications i need to take will change my family routine? the me that will have to transform how my family interacts with me? the me that is pondering how the ongoing monitoring will require consistent access to technology and put pressure and onus on me? the me that will have to deal with not living carefree? the me that is thinking how i will have to limit my social interactions due to conditions placed on my levels of activity? the me that will have to live in further social isolation? the me that is aware that i possess knowledge to be more involved in my care and want to share another perspective on your plan for me? the me that is vocal and opinionated about me? the aspects of me that make me me? you each act like you listen, genuinely care for me, but when interactions last mere minutes, how can you get to know the whole me? for there are unspoken aspects of me that you often do not get to hear in your individual and collective discovery. you each seem like you are looking at me, the eye contact is there, your observations run deep, but what exactly do you see when you look at me? for my body language often conveys i need to develop trust to fully reveal the whole me. you seem like you feel me and at times i experience the warmth, but the emotional connection appears superficial to me. for i feel the power you each have over me, but it is this power that you need to share not only amongst yourselves, but with me before i can be fully me. in the back of my mind i know – it’s not you, it’s the system. its how we educate each of you in silos; its how we train you. it’s the exhaustion of the pandemic, of the ongoing ask, of the limited thanks, of being short staffed, of being underpaid, of not having the time to go to the bathroom, sleep, take a gulp or digest. the pressures you face, the responsibilities you are granted, the expectations are great, and the fatigue is a given, but it is my responsibility to share that there is a me that you need to collectively see. the me you need to learn to see can be a solution for you and me. the time you spend upfront to share with me will save the total time you spend as a team with me. when you get to know the whole me, the me feels valued and engaged, and you get the knowledge you need to treat me. you can then take care of me more effectively. when you develop treatment plans with me that work for me, my lifestyle and family, together we can then enhance my adherence and goal achievability. when you empower me to be a self-care manager of my condition in the community, you minimize my readmissions, and decrease wait times for others in society. i always wonder – do you as my healthcare providers understand the importance of seeing the real me? i do not mean literally understand, in your mind. i mean do you understand the impact of seeing me can have on you and me? when you actually see me collectively, the whole me becomes your possibility, for active partnering and person-centred care delivery. it’s the me you need to see, the me you need to include to collaborate successfully, to create a future for the healthcare system where interprofessionally, ihtp, 2(3), 326-328, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 328 the joining of you and me therapeutically equates to exceptional healthcare delivery. reference (reference were used to inform this poem on the concept of person-centred care) registered nurses’ association of ontario. (2015). personand family-centred care. https://rnao.ca/sites/rnaoca/files/final_web_version_0.pdf ihtp, 2(2), 164-174, 2022 cc by-nc-nd 4.0 issn 2563-9269 164 transition to online education in sri lanka during covid-19: a descriptive phenomenological study s.p. kalpana jeewanthi subasinghe1, a. m. shyama deepanie pathiranage1 1department of nursing, faculty of allied health sciences, university of peradeniya, sri lanka corresponding author: s.p. k. j. subasinghe (kalpanasubasinghe1116@gmail.com) abstract the novel coronavirus (covid-19) that originated in china was declared a global pandemic by the world health organization in march 2020. to limit the spread of the disease, the sri lankan government announced the closure of all educational institutes. the school closure encouraged the use of home-based learning, and this transition was a critical period for both teachers and students. because most sri lankan children reside in rural areas, our study examined how teachers in rural schools experienced the lockdown in relation to their teaching role during the pandemic. we used a descriptive phenomenological study design with purposive sampling until we achieved the saturation point. in-depth interviews were conducted via the zoom platform, using a validated guideline that was piloted before the study and analyzed based on the thematic analysis approach. we identified five major themes: (1) adjustment to the online teaching/learning process; (2) experience of challenges; (3) experience of new opportunities; (4) impact of parental involvement; and (5) impact of teachers’ and children’s physical, psycho-social well-being. the study identified lack of access to technology and lack of proper guidance from the family as challenges during home-based learning. parental involvement during teaching sessions decreased teachers’ autonomy. inadequate and inaccurate evaluation of the students disrupts the learning process. teachers perceived that children’s distance from classroom learning and their peer groups will affect the children’s development. keywords covid-19; children; online education; rural sri lanka, teachers background in 2004 the coronavirus was found to cause a sometimes, fatal severe acute respiratory syndrome in humans (kumar, 2020). the virus’s new form— which was reported from the city of wuhan in china in december 2019—was called novel coronavirus or 2019-ncov (covid-19) in january 2020. with the appearance of new confirmed cases of covid-19 and new clusters worldwide, the world health organization declared it a global pandemic in march (world health organization, 2020). because the disease’s transmission came through direct contact with an infected person’s respiratory droplets, governments around the world implemented lockdown policies, travel restrictions, and quarantine programs to limit the spread of the disease (brooks et al., 2020; xiang et al., 2020). the first confirmed case of covid-19 in sri lanka was reported on 27 january 2020 (jayatilleke et al., 2020). as a preventive measure, the government there announced the closure of all educational institutes in both the public and private sectors (epidemiology unit, 2020). by 15 march 2020, 50 percent of social-distancing policies were implemented, including school closures, and prohibiting public gatherings (erandi et al.,2020). by 20 march, that number had climbed to 75 percent. island-wide curfews were imposed to reduce people’s mobility (hewage et al., 2020). by collaborating with ihtp, 2(2), 164-174, 2022 cc by-nc-nd 4.0 issn 2563-9269 165 military forces and the health sector, the government created a successful quarantine policy. some villages were sealed to prevent the spread of the disease. schools and other educational institutions remained closed until further notice (senasinghe et al., 2020). by the end of the first covid-19 wave, schools reopened on 6 july after over three months of lockdown. but with the second wave schools again closed on 5 october 2020 and primary sections of all schools (except in the western province) didn’t reopen until 11 january 2021. when the third wave hit after sinhala and hindu new year, the schools closed again from april 2021, causing vast educational inequities. during past pandemics the incidences of child labour, child abuse, and teen pregnancies increased when schools closed (armitage & nellums, 2020). the most vulnerable group is children who live with their grandparents when their parents work abroad. although the school closures aimed to reduce covid-19 transmission, prolonged closures reduce parental and teachers’ productivity and place a huge care burden for parents who work in the health sector (bayham & fenichel, 2020; viner et al., 2020). because school closure during the pandemic was less effective compared to during an influenza outbreak in the past (viner et al., 2020), it is questionable whether this prolonged closure of schools had more advantages than disadvantages. along with new social-distancing guidelines, distance and online learning are in a new era in education (adedoyin & soykan, 2020). online learning is a form of education that uses various electronic sources such as websites, satellite broadcasting, etc. but the terms are not clearly defined in the literature (moore et al., 2011). when educational institutes closed, the use of online learning-maintained continuity in the education system. as a group with greater responsibilities in the education system, schoolteachers were also victims in this crisis (epidemiology unit, n.d.). in the transition from school-based learning/teaching to home-based learning/teaching, both teachers and students faced anxiety in adapting to their new roles (“relative earnings: gender, age and education gaps,” 2021). home confinement during the pandemic also created various health issues for people (papaspanos, 2020). the workload and burden for front-line workers increased with home confinement—especially for women (mclaren et al., 2020). evidence documents how the pandemic increased the risk of mental health problems such as stress, anxiety, depression, insomnia, and post-traumatic stress symptoms among people (torales et al., 2020). teachers experienced a huge challenge with getting accustomed to new learning methods and acquiring skills and resources for online learning (fauzi & sastra khusuma, 2020). online learning affects interactions between teachers and students which will affect the quality of education (dhawan, 2020). some studies have addressed the advantages of online learning such as the ability to save time and energy, but it has significant limitations for underprivileged communities (mukhtar et al., 2020). developing countries experience this educational inequity because they lack equal access to technology and are unable to provide the desired learning materials (adnan, 2020). the sri lankan population of children aged 5 to 17 years is estimated to be 4.6 million, and the majority reside in rural areas. although emergency remote learning was implemented in the country’s urban areas during the pandemic, we doubted that most rural students and teachers had access to the new technology and online educational platforms during home confinement. hardly any study dealt with this issue for the country’s rural population (gangahagedara et al., 2021). we therefore aimed to describe the experiences of primary school teachers in rural areas in sri lanka, in particular the educational activities conducted online during home confinement in the covid-19 pandemic. this study was granted ethical approval from the faculty of allied health sciences, university of peradeniya. methods study design we used colaizzi’s descriptive phenomenological study design (morrow et al., 2015). descriptive phenomenology focuses on the subjective and unique experience of an individual or a group and it is especially valuable in areas where there is little existing research. the process mainly attempts to discover a person’s lived experience (willis et al., 2016). giorgi (1985) is considered the pioneer in ihtp, 2(2), 164-174, 2022 cc by-nc-nd 4.0 issn 2563-9269 166 bringing phenomenological thinking into psychology. giorgi’s methods were extended by colaizzi (1978). although he is little-known in psychology his methods are widely used in other disciplines such as the health sciences (northall et al., 2020). colaizzi proposed a distinctive seven-step process to perform rigorous analysis of qualitative data, with each step staying close to the data (“application of colaizzi’s method of data analysis in phenomenological research, ” 2021). the result is a concise description of the phenomenon under study, validated by the participants who created it. it depends on the experiences shared by informationrich participants. these data may come from face-toface interviews but they can also be obtained from written narratives, blogs, research diaries, and online interviews. participants study participants were teachers who worked in the rural community during the lockdown period of the pandemic. teachers assigned to teach children who were eight to ten years old (grades 4 and 5) were included. sample size because data saturation is a widely accepted principle for determining the sample size in qualitative research, we determined our sample size based on data saturation. the saturation point was achieved at the 16th participant. trustworthiness ― rigour and reflexivity we followed the four-dimensional criteria (credibility, transferability, dependability, and conformability) to maintain the trustworthiness of the study results (forero et al., 2018). to achieve credibility, after each interview we sent a summary of the findings to each participant and asked them to comment. for persistent observation of data, both authors reread the contents of the interviews several times before identifying patterns between them. transferability was assured by providing adequate contextual information (setting, sample, sample size, sample strategy, socio-demographics, inclusion and exclusion criteria, and the interview procedure). dependability was achieved by using accepted standards such as colaizzi’s (1978) descriptive phenomenological study design and the thematic analysis method. to assure conformability, team members achieved a consensus for the final themes. both researchers identified themes individually and continuously discussed new themes when they arose. data collection both investigators have experience with qualitative data collection methods, and they conducted in-depth interviews via the zoom videoconferencing platform. we selected three schools in a very rural area of northwestern province, sri lanka. we sent information about the study to the schools’ principals by mail. each principal explained to the teachers the nature of the study, how their participation was voluntary, safeguards for privacy and confidentiality, and their right to withdraw at any time. the principals also gave our contact details to the teachers. voluntary participants who contacted us were recruited for the study. the principals were not aware of which teachers we interviewed. all details of the study and consent forms were sent to the participants via e-mail. completed consent forms were also returned via e-mail. once participants selected the date and time for interviews, we scheduled a zoom meeting using an affordable data package. only a 40-to-60-minute meeting was conducted for each participant. if that time did not allow them to complete all the questions, we scheduled a second meeting. no more than two meetings were held with a single participant. a single investigator conducted each interview, which began with building a professional and friendly rapport. the teacher could also select a preferred setting for the interview ― either home or school. we used a semi-structured interview guide. it focused on educational activities among grade 4 and 5 students and their teachers in a rural community during the pandemic’s home-confinement period. the main questions were: • what difficulties are you are facing when continuing educational activities for your students at this time? ihtp, 2(2), 164-174, 2022 cc by-nc-nd 4.0 issn 2563-9269 167 • what online learning methods are you using and how? • what challenges are you facing when using these methods? • how about the support given by parents, the school, and other authorities? • how about your satisfaction with the educational activities? • what kind of feedback have you received from your students and parents? • how has this transition affected your normal daily routine? • in your view, how does this transition affect the students’ development? • do you have any suggestions to improve the ongoing online learning activities in rural schools? the researchers modified the interview guide during the interview period because we identified a need to acquire more specific data concerning the sri lankan context. each interview was digitally recorded with the participants’ prior permission. the interviews were conducted during the period of school closure from april to july 2021. data analysis digital files were transcribed verbatim, and all personal identifiers were removed from the transcripts. data analysis began after the transcription of the first interview. we used an inductive approach to characterize themes that immerged through the data. more specifically, we employed the colaizzi seven-step method: 1. familiarization. we familiarized ourselves with the data by reading through the transcript several times. 2. identifying significant statements (codes). we read and identified codes within the transcribed interviews independently. all statements/codes in the accounts that were of direct relevance to the phenomenon under investigation were identified. 3. formulating meanings. we identified relevant meanings after a careful consideration of the significant statements. by identifying patterns within the codes, we also identified descriptive subthemes. 4. clustering themes. we clustered the identified meanings into themes that were common across all accounts. 5. developing an exhaustive description. we wrote full and inclusive descriptions of the phenomena, incorporating all the themes produced in step 4. 6. producing the fundamental structure. we condensed the exhaustive description down to a short, dense statement that captures just those aspects deemed to be essential to the structure of the phenomenon and major themes were identified. at the final stage both researchers clarified any disagreement in their independent analyses. 7. seeking verification of the fundamental structure. we returned the fundamental structure statement to all participants by phone to ask whether it captured their experience. sometimes a researcher went back to modify earlier steps in the analysis informed by this feedback (morrow, rodriguez, & king 2014). results our sample consisted of 6.25 percent men (1) and 93.75 percent women (15). just over 12 percent of the teachers (12.5%) had completed postgraduate education, 25 percent had bachelor’s degrees, and 62.5 percent had diploma-level education. most (93.75%) have more than five years of experience in primary school education. all the participants were sinhala, buddhist, and married with children. five major themes were identified during our analysis of data: adjusting to the home-based teaching and learning process, experiencing challenges, emergent new opportunities, impact of parental involvement, and impact on teachers’ and students’ physical and psychosocial well-being. what follows are summaries of the themes and subthemes we identified, in part represented by participants’ own words. adjusting to the home-based teaching and learning process maintaining minimum physical contact ihtp, 2(2), 164-174, 2022 cc by-nc-nd 4.0 issn 2563-9269 168 most of the participants used alternative teaching methods to avoid physical contact with students and parents. before starting online teaching, they distributed printouts of reading material, worksheets, and assignments to the students through one parent, keeping resources at a shop near the school and posting the assignments. in rural areas of sri lanka access to the internet is limited for most students, so teachers used alternative methods other than online teaching in the initial period of school closure. p8. at first, we left an assignment file in a store near the school and asked the children to pick it up. later it came to a level where it could not even be kept because of the increase of the covid situation. p3. i post a set of papers via mail to one mom, and they share it among them. p6. i wrote assignments relevant to a period of one month in a workbook and went to one parent and then they said they would share it. at first, i was told to come to school and take assignments, but it was difficult for them because their homes are very far from school. transition to new technology most teachers had used whatsapp and zoom. sometimes they had to contact children over the phone because of a lack of quality internet connection where the children resided. p8. at first, they didn’t even have a phone. then they got used to it. now a significant number of children connect to classes through zoom technology. p12. children are engaged in educational activities on zoom through the online system. for the children who cannot be connected by zoom, assignment and question papers are sent through whatsapp. p7. sometimes i teach lessons to children who can’t connect through whatsapp through phone calls. somehow in the evening i make sure everyone gets the lesson i did on that particular day. p4. first the assignments were sent through whatsapp and then the voice recordings were sent and then the kids gradually got used to online. now the online education system is being run and video clips are also being sent. experiencing challenges lack of digital competencies one of the major challenges the teachers experienced was their lack of competency in using new technology for online teaching. most of the participants did not have any prior training on the use of the software for virtual teaching. they taught themselves this software during this pandemic period. p4. teachers have no prior knowledge or training of this technology. we were the ones who learned these things with difficulty, knowing it was a necessity in these days. it took a little bit of extra time as our generation is not much familiar with this new technology. p3. at first, i didn’t even know that there is software like zoom where i can do lessons online for many students at once. parents, guardians, and students also did not possess adequate knowledge of or competency with the technology for online learning. this was another challenge for the teachers when continuing their lessons. sometimes the students owned a digital device but neither the student nor the parents had the knowledge to download the relevant software for online education, to activate internet packages, or to download assignments. some students did not have access to any digital device. p5. although most parents have a smartphone, they do not have the knowledge to handle whatsapp and zoom. p2. we made the students aware about zoom online classes through a whatsapp group and then there were many problems for them when downloading the application or activating data packages. they are primary students and not as independent as older students, so they are helpless when their parents are not familiar with this technology. p6. there were many children who do not even have a phone to talk at home, so it makes no sense for ihtp, 2(2), 164-174, 2022 cc by-nc-nd 4.0 issn 2563-9269 169 them about these online classes. even the parents don’t understand. less access to the internet most of the teachers and students faced problems with internet connection. p6. i work in a very rural division. there is no communication network at all. some children climb trees to even get a phone call so they can’t take classes online. although they possess the digital device and the relevant software, people’s internet signal quality was not enough to conduct or participate in an online class without any disturbance. sometimes students were required to travel a significant distance for internet signals. p9. some students join the zoom class but disconnect quickly. then they give me a phone call saying that they lack the internet signals, or their data package has expired … if i do a lesson for two hours, after like half an hour most of the students have disconnected from the online class. p12. i also have the problem with poor network coverage. i also bought a new internet router, but the problem did not resolve. one teacher explained that some students live in villages where there is a wild elephant threat so they cannot go outside in the evening. p5. there is no internet coverage in that area so they must go to a far place but due to travel restrictions, they can’t go very far. this village also has a wild elephant threat. so they give telephone calls and tell me that if they have to join the online class, they need to go to the village temple where there is internet coverage. but in the evening, they can’t be outside because of the wild elephant problem. lack of proper guidance from the family students’ internet misuse resulting from not having proper guidance from the family was another challenge the teachers experienced while engaging in home-based educational activities. some students pretended that they were in class while they played video games. the teachers felt there was a lack of proper guidance from the parents or guardian. p8. there is one student in my class―the mother has left the family and the father is an army soldier and most often not at home. the child therefore lives with the grandmother who has no knowledge about digital devices. this child always connects to the zoom class but turns off his camera. later the grandmother complained that he is playing video games faking that he is in class. one teacher explained how, in such instances, the teacher must act as a mediator to solve the issues. p11. there were so many complaints from parents about children watching youtube videos unnecessarily when they got the phone for online classes. then i advised the children by means of the school principal. student evaluation process most of the teachers complained about lack of proper student evaluation methods during homebased learning. although teachers gave assignments and test papers, sometimes they were unsure whether the student did the work themselves or with the help of siblings. p8. i am not sure whether some assignments are solely done by the student. but i can’t blame them. i caught some elder siblings doing the math exercises of my students. sometimes even essays were written by the parents. i felt that because i have known these students for years. one teacher had a concern that these changes in student-teacher interaction will have a negative impact on the students’ education. p4. we have to adjust the handwriting of the primary student. but during online classes it is very difficult. in school we take the student close and adjust their handwriting. this is very bad for children’s future. emergent opportunities new technological skills ihtp, 2(2), 164-174, 2022 cc by-nc-nd 4.0 issn 2563-9269 170 most of the teachers have gained new skills involving technology while adjusting to online classes. even the students have gained this knowledge. teachers perceived this as a positive impact of homebased learning. p14. it was a very good chance for us to learn about this new technology. even the students are now very keen on using the digital devices. students send me “good morning” messages. they download various educational videos and upload them to the whatsapp group. it’s really a good progress. p15. two students got together and made a video of a dance they did and then uploaded it―they chose a beautiful location in the village for the background. even i couldn’t imagine how these kids have improved this much. teachers explained that this has also been a good opportunity for parents to be familiar with this new technology. p4. now the children and the parents know when to mute the mic and when to unmute and talk. i see a very good improvement. using a variety of teaching aids teachers identified the opportunity to use audiovisual teaching aids during online classes. they didn’t have the chance to use this technology when they taught in person at school due to a lack of resources. because of this transition teachers were able to show real-time pictures and practical videos using webbased teaching. p8. our school does not have a computer. using technology for lessons was a dream. but now i can show them videos relevant to the lesson and i think this has brought our students an opportunity to see the world beyond their frame. p16. i was able to show videos of science experiments using the internet. but in school we did not have equipment to do those experiments― we just taught them. impact of parental involvement positive impact of parental involvement teachers perceived that parent supporting students in the online classes was a positive aspect. parents could assist their child with technical difficulties encountered during the class and help to clarify unclear points of the lesson. sometimes siblings were also involved which made it easier for the teacher to continue the lesson with minimal distractions. p4. i see a good progress in students because now parents stay close to the child during the lesson. parents also listen to me so when doing assignments and papers they can help their child. p9. at first after a lesson many children phoned me to clarify certain points in the lesson but now as mothers also join the class they are explaining to the child. negative impact of parental involvement some teachers see parental involvement in the online class as a burden. they mentioned that parental presence can reduce teachers’ autonomy to point out a child’s mistakes. when the parents stay near the child during the class it also reduces the child’s independence to engage in critical thinking and affects the teacher’s process of evaluating the child. p13. i feel really distracted when parents join the class. i can see they secretly tell answers to the child, and it affects my evaluation of the child. p7. sometimes when i point something out the students’ parents turn off the camera. one girl was playing with a doll during the online class and when i advised her not to do it, i think her mother turned off both the camera and the mic. impact on physical, psycho-social well-being positive impact on physical, psycho-social well being most of the teachers mentioned that they experienced less fatigue and increased rest time during the period of home-based teaching. they were concerned about having to travel to school during the pandemic and feared getting infected but now it has been resolved. because of this home confinement the ihtp, 2(2), 164-174, 2022 cc by-nc-nd 4.0 issn 2563-9269 171 teachers have enhanced family bonds and relationships with their own family and spend more time with their own children. p4. it’s so much easier than travelling to school and we have no fear of travelling by bus during the pandemic. at first, i was very afraid that i might catch the virus while travelling. p12. my own children also stay at home these days, so i can spend time with them and help with their studies while working from home. p13. i decided that it is better we teach from home until we get fully vaccinated. online learning is a good solution. negative impact on physical, psycho-social well being teachers experienced physical difficulties with increased screen time. they mentioned feeling stressed, depressed, and anxious about having to spend more time for schoolwork than on normal routine days. students also complained to the teachers about feeling bored, lonely, and stressed during home confinement. some students were forced by their parents to do a higher workload while at home. p2. this technology is new to our generation. i feel really stressed and depressed at the end of the day because i must look at the screen of the phone for a longer time. i even got a severe headache. now i am using glasses. p8. when we go to school it’s only from 7:30 a.m. to 1:30 p.m. or sometimes 2:00 p.m. but now i feel like i am spending the whole day for schoolwork. i have to start the online class at 6:30 a.m. because at that time the internet speed is quite high and then the class ends at 8:30 a.m. then i have to correct all the papers that students have sent me through whatsapp and send a recording of their mistakes back to them. i am really exhausted at the end of the day. p4. my students often ask when the school is reopening. now they are fed up with online classes. one student complained that her mother is forcing her to engage in another five extra classes in the afternoon and in the evening, so i had to advise the mother. p12. one student sent me a very emotional song that she wrote. i feel that these children are really suffering, and they are eagerly waiting to meet their friends and teachers again. discussion the results of the study highlight teachers’ negative and positive experiences in virtual teaching during the pandemic lock-down. home-based teaching is not a familiar concept for primary school children or the primary school teachers. because of limited electricity and telecommunication facilities in rural sri lanka, implementing online classes is a big challenge. sri lanka telecom (slt) is the largest internet service provider in the country. a typical data package costs usd 11 per month for 150 hours. the actual per minute cost of dialup internet access is normally high (gunawardana, 2005). low socioeconomic status, parents’ inadequate awareness about the advantages of using the internet, and a lack of computer and english language skills have been identified as barriers for internet adoption in rural communities (madhubhashini, 2019). according to 2020 statistics, 81.29 percent of the total population of sri lanka resides in rural areas. the results of our study suggest that most of the students and teachers of rural areas are facing issues with internet quality and a lack of technological skills and devices when transitioning to home-based teaching and learning. in a previous study teachers identified whatsapp as an affordable application for teaching and learning. they perceived students were motivated by and interacted more in online classes. parents and guardians were identified as potential resources to prevent student distractions (nsabayezu et al., 2020). we found similar results in our study, which also highlighted the negative impact of parental involvement. this needs to be examined further. a reliable internet connection is necessary to carry out quality online teaching sessions (kaiser & strawn, 2021). this was a major concern for our participants. when a teacher cannot give immediate feedback to the students it reduces the teaching session’s effectiveness. it also presents a major educational ihtp, 2(2), 164-174, 2022 cc by-nc-nd 4.0 issn 2563-9269 172 inequity for students. therefore, future stakeholders should be concerned about these educational inequities when planning guidelines for online education for primary school children. teachers and students are experiencing socioemotional and physical health problems because of the transition away from the classroom. previous studies conducted during the pandemic have shown that home confinement has brought depressive symptoms, anxiety, sleep deprivation, and health risk behaviours among different populations around the globe (cancello et al., 2020; lópez-bueno et al., 2020; majumdar et al., 2020). our study had similar results though further research is needed to examine the issues specific to rural sri lanka. home-based learning has also brought new opportunities for teachers to upgrade their teaching skills and incorporate various new models and methods into their practice. this transition will open a new era of primary education in sri lanka. however, because of unequal access and distribution of resources, rural schoolteachers and students will continue to face greater challenges. conclusion and future directions online learning has emerged as a substitute for conventional schooling methods to provide essential learning to children at home. to achieve academic goals across the population, schools should proceed cautiously when incorporating online methods of teaching and learning if they don’t want to produce educational inequities among children. for example, how will parents with different educational backgrounds follow teachers’ instructions? how will curriculum delivery be affected by poor internet facilities or other inadequate resources for rural communities? these issues must be addressed. opportunities for enhancing teachers’ lifelong professional development should also be at the forefront of this transformative process. researchers have an opportunity to evaluate the effectiveness of different teaching approaches and develop novel strategies specific to unprivileged communities. input from families can be helpful to create a learning environment that benefits everyone. this study was confined to one rural area of sri lanka, and it discusses the teachers’ perceptions only. future studies are needed among a wider population to discuss feelings and experiences of children and their parents when engaging in online education and home-based learning during a pandemic. acknowledgement we express our sincere gratitude to all the schoolteachers who cooperated in this study. references adedoyin, o. b., &soykan, e. (2020). covid-19 pandemic and online learning: the challenges and opportunities. interactive learning environments, 1-13. https://doi.org/10.1080/10494820.2020.18 13180 adnan, m. (2020). online learning amid the covid-19 pandemic: students perspectives. journal of pedagogical sociology and psychology, 1(2), 4551. https://doi.org/10.33902/jpsp.2020261 309 application of colaizzi’s method of data analysis in phenomenological research. (2021). medico legal update. https://doi.org/10.37506/mlu.v21i 2.2800 armitage, r., &nellums, l. b. (2020). considering inequalities in the school closure response to covid-19. the lancet global health, 8(5), e644. https://doi.org/10.1016/s2214109x(20)30116-9 bayham, j., &fenichel, e. p. (2020). impact of school closures for covid-19 on the us health-care workforce and net mortality: a modelling study. the lancet public health, 5(5), e271e278. https://doi.org/10.1016/s24682667(20)30082-7 brooks, s. k., webster, r. k., smith, l. e., woodland, l., wessely, s., greenberg, n., & rubin, g. j. (2020). the psychological impact of quarantine and how to reduce it: rapid review of the evidence. ssrn electronic journal. https://doi.org/10.2139/ssrn.3532534 cancello, r., soranna, d., zambra, g., zambon, a., &invitti, c. (2020). determinants of the lifestyle changes during covid-19 pandemic in the residents of northern italy. https://doi.org/10.1080/10494820.2020.1813180 https://doi.org/10.1080/10494820.2020.1813180 https://doi.org/10.33902/jpsp.2020261309 https://doi.org/10.33902/jpsp.2020261309 https://doi.org/10.37506/mlu.v21i2.2800 https://doi.org/10.37506/mlu.v21i2.2800 https://doi.org/10.1016/s2214-109x(20)30116-9 https://doi.org/10.1016/s2214-109x(20)30116-9 https://doi.org/10.1016/s2468-2667(20)30082-7 https://doi.org/10.1016/s2468-2667(20)30082-7 https://doi.org/10.2139/ssrn.3532534 ihtp, 2(2), 164-174, 2022 cc by-nc-nd 4.0 issn 2563-9269 173 international journal of environmental research and public health, 17(17), 6287. https://doi.org/10.3390/ijerph17176287 dhawan, s. (2020). online learning: a panacea in the time of covid-19 crisis. journal of educational technology systems, 49(1), 522. https://doi.org/10.1177/004723952093 4018 epidemiology unit. (n.d.). welcome to epidemiology unit official website. https://epid.gov.lk/web/index.php?lang=en erandi, k. k., mahasinghe, a. c., perera, s. s., &jayasinghe, s. (2020). effectiveness of the strategies implemented in sri lanka for controlling the covid-19 outbreak. journal of applied mathematics, 2020, 1-10. https://doi.org/10.1155/2020/2954519 fauzi, i., & sastra khusuma, i. h. (2020). teachers’ elementary school in online learning of covid-19 pandemic conditions. jurnal iqra’: kajian ilmu pendidikan, 5(1), 5870. https://doi.org/10.25217/ji.v5i1.914 forero, r., nahidi, s., de costa, j., mohsin, m., fitzgerald, g., gibson, n., mccarthy, s., & aboagye-sarfo, p. (2018). application of four-dimension criteria to assess rigour of qualitative research in emergency medicine. bmc health services research, 18(1). https://doi.org/10.1186/s12913-018-2915-2 gangahagedara, r., karunarathna, m., athukorala, w., subasinghe, s., &ekanayake, p. (2021). emergency teaching–learning methods (etlm) during covid-19: lessons learned from sri lanka. education sciences, 11(10), 579. https://doi.org/10.3390/educsci11100579 gunawardana, k. d. (2005). an empirical study of potential challenges and benefits of implementing e-learning in sri lanka. ssrn electronic journal. https://doi.org/10.2139/ssrn.2931316 hewage, s., wickramasinghe, n., jayakody, s., samaranayake, d., prathapan, s., &arambepola, c. (2020). social distancing and its impact on flattening the covid-19 curve in sri lanka. journal of the college of community physicians of sri lanka, 26(1), 65. https://doi.org/10.4038/jccpsl.v26i1.8314 jayatilleke, a. u., dayarathne, s., de silva, p., siribaddana, p., abeygunawardana, r. a., nieveras, o., de silva, n., & de silva, j. (2020). covid-19 case forecasting model for sri lanka based on stringency index. https://doi.org/10.1101/2020.05.20. 20103887 kaiser, s., & strawn, s. (2021). instructor roles in online learning environments from 2019 to 2020: a comparative systematic literature review of research before and during the covid-19 pandemic. edulearn21 proceedings. https://doi.org/10.21125/edulearn.2021.15 21 kumar, d. (2020). corona virus: a review of covid-19. eurasian journal of medicine and oncology. https://doi.org/10.14744/ejmo.2020.51418 lópez-bueno, r., calatayud, j., casaña, j., casajús, j. a., smith, l., tully, m. a., andersen, l. l., &lópez-sánchez, g. f. (2020). covid-19 confinement and health risk behaviors in spain. frontiers in psychology, 11. https://doi.org/10.3389/fpsyg.2020.01426 madhubhashini, g. t. (2019). the use of information and communication technologies (icts) for natural disaster management in sri lanka. the international journal of interdisciplinary global studies, 14(2), 27-39. https://doi.org/10.18848/2324755x/cgp/v14i02/27-39 majumdar, p., biswas, a., &sahu, s. (2020). covid-19 pandemic and lockdown: cause of sleep disruption, depression, somatic pain, and increased screen exposure of office workers and students of india. chronobiology international, 37(8), 1191-1200. https://doi.org/10.1080/07420528.2020.17 86107 mclaren, h. j., wong, k. r., nguyen, k. n., &mahamadachchi, k. n. (2020). covid-19 and women’s triple burden: vignettes from sri lanka, malaysia, vietnam and australia. social sciences, 9(5), 87. https://doi.org/10.3390/socsci9050087 moore, j. l., dickson-deane, c., &galyen, k. (2011). e-learning, online learning, and distance learning environments: are they the same? the internet and higher education, 14(2), 129-135. https://doi.org/10.1016/j.iheduc.2010.10.0 01 https://doi.org/10.3390/ijerph17176287 https://doi.org/10.1177/0047239520934018 https://doi.org/10.1177/0047239520934018 https://epid.gov.lk/web/index.php?lang=en https://doi.org/10.1155/2020/2954519 https://doi.org/10.25217/ji.v5i1.914 https://doi.org/10.1186/s12913-018-2915-2 https://doi.org/10.3390/educsci11100579 https://doi.org/10.2139/ssrn.2931316 https://doi.org/10.4038/jccpsl.v26i1.8314 https://doi.org/10.1101/2020.05.20.20103887 https://doi.org/10.1101/2020.05.20.20103887 https://doi.org/10.21125/edulearn.2021.1521 https://doi.org/10.21125/edulearn.2021.1521 https://doi.org/10.14744/ejmo.2020.51418 https://doi.org/10.3389/fpsyg.2020.01426 https://doi.org/10.18848/2324-755x/cgp/v14i02/27-39 https://doi.org/10.18848/2324-755x/cgp/v14i02/27-39 https://doi.org/10.1080/07420528.2020.1786107 https://doi.org/10.1080/07420528.2020.1786107 https://doi.org/10.3390/socsci9050087 https://doi.org/10.1016/j.iheduc.2010.10.001 https://doi.org/10.1016/j.iheduc.2010.10.001 ihtp, 2(2), 164-174, 2022 cc by-nc-nd 4.0 issn 2563-9269 174 morrow, r., rodriguez, a., & king, n. (2014). camping: a tool for relationship maintenance? therapeutic communities: the international journal of therapeutic communities, 35(2), 4855. https://doi.org/10.1108/tc-12-20130034 morrow, r., rodriguez, a. and king, n. (2015). colaizzi’s descriptive phenomenological method. the psychologist, 28(8), 643-644. mukhtar, k., javed, k., arooj, m., & sethi, a. (2020). advantages, limitations and recommendations for online learning during covid-19 pandemic era. pakistan journal of medical sciences, 36(covid19s4). https://doi.org/10.12669/pjms.36.covid 19-s4.2785 northall, t., chang, e., hatcher, d., & nicholls, d. (2020). the application and tailoring of colaizzi’s phenomenological approach in a hospital setting. nurse researcher, 28(2), 2025. https://doi.org/10.7748/nr.2020.e1700 nsabayezu, e., iyamuremye, a., kwitonda, j. d., kwitonda, j. d., &mbonyiryivuze, a. (2020). teachers’ perceptions towards the utilization of whatsapp in supporting teaching and learning of chemistry during covid-19 pandemic in rwandan secondary schools. african journal of educational studies in mathematics and sciences, 16(2), 83-96. https://doi.org/10.4314/ajesms.v16i2.6 papaspanos, n. (2020). effects of covid-19 home confinement on eating behaviour and physical activity: results of the eclbcovid19 international online survey. kompass nutrition & dietetics, 1(1), 19-21. https://doi.org/10.1159/000512852 ranasinghe, r. (2020). post-covid19 (novel corona) economic recovery: critical review on economic immunity of sri lanka. ssrn electronic journal. https://doi.org/10.2139/ssrn.3587179 rasmitadila, r., aliyyah, r. r., rachmadtullah, r., samsudin, a., syaodih, e., nurtanto, m., &tambunan, a. r. (2020). the perceptions of primary school teachers of online learning during the covid-19 pandemic period: a case study in indonesia. journal of ethnic and cultural studies, 7(2), 90. https://doi.org/10.29333/ejecs/388 relative earnings: gender, age and education gaps. (2021). oecd employment outlook 2021. https://doi.org/10.1787/1e09a76b-en torales, j., o’higgins, m., castaldelli-maia, j. m., &ventriglio, a. (2020). the outbreak of covid-19 coronavirus and its impact on global mental health. international journal of social psychiatry, 66(4), 317-320. https://doi.org/10.1177/002076402091521 2 viner, r., russell, s., croker, h., packer, j., ward, j., stansfield, c., mytton, o., &booy, r. (2020). school closure and management practices during coronavirus outbreaks including covid-19: a rapid narrative systematic review. ssrn electronic journal. https://doi.org/10.2139/ssrn.3556648 who | world health organization. (2020, february). https://www.who.int/docs/defaultsource/coronaviruse/situationreports/20200402-sitrep-73-covid-19.pdf willis, d. g., sullivan-bolyai, s., knafl, k., & cohen, m. z. (2016). distinguishing features and similarities between descriptive phenomenological and qualitative description research. western journal of nursing research, 38(9), 1185-1204. https://doi.org/10.1177/019394591664549 9 xiang, y., yang, y., li, w., zhang, l., zhang, q., cheung, t., & ng, c. h. (2020). timely mental health care for the 2019 novel coronavirus outbreak is urgently needed. the lancet psychiatry, 7(3), 228-229. https://doi.org/10.1016/s2215 0366(20)30046-8 https://doi.org/10.1108/tc-12-2013-0034 https://doi.org/10.1108/tc-12-2013-0034 https://doi.org/10.12669/pjms.36.covid19-s4.2785 https://doi.org/10.12669/pjms.36.covid19-s4.2785 https://doi.org/10.7748/nr.2020.e1700 https://doi.org/10.4314/ajesms.v16i2.6 https://doi.org/10.1159/000512852 https://doi.org/10.2139/ssrn.3587179 https://doi.org/10.29333/ejecs/388 https://doi.org/10.1787/1e09a76b-en https://doi.org/10.1177/0020764020915212 https://doi.org/10.1177/0020764020915212 https://doi.org/10.2139/ssrn.3556648 https://www.who.int/docs/default-source/coronaviruse/situation-reports/20200402-sitrep-73-covid-19.pdf https://www.who.int/docs/default-source/coronaviruse/situation-reports/20200402-sitrep-73-covid-19.pdf https://www.who.int/docs/default-source/coronaviruse/situation-reports/20200402-sitrep-73-covid-19.pdf https://doi.org/10.1177/0193945916645499 https://doi.org/10.1177/0193945916645499 https://doi.org/10.1016/s2215-%200366(20)30046-8 https://doi.org/10.1016/s2215-%200366(20)30046-8 371 ihtp, 2(3), 371-384, 2022 cc by-nc-nd 4.0 issn 2563-9269 examining students’ knowledge of infant feeding: a non-experimental descriptive study jennifer abbass-dick1, barbara chyzzy2, megan mccutcheon1, mikaila nesbitt1, manon lemonde1 1faculty of health sciences, ontario tech university, oshawa, ontario, canada; 2daphne cockwell school of nursing, toronto metropolitan university, toronto, ontario, canada corresponding author: b. chyzzy (barbara.chyzzy@ryerson.ca) abstract introduction: breastfeeding rates in canada are suboptimal, putting mothers and their infants’ health at risk. understanding breastfeeding knowledge and attitudes in the university student population is important as many are likely to become parents in the future. university students’ knowledge and attitudes regarding infant feeding has been studied internationally; however, no studies including both female and male students have been conducted in canada. the purpose of this study was to determine breastfeeding experiences, education, knowledge, infant feeding attitude and perceptions of the difference in mode of infant feeding among university students which can be used to inform future health promotion campaigns and school curriculum. methods: a non-experimental, descriptive cross-sectional study was conducted in which data from university students was collected to identify knowledge and attitude toward breastfeeding identify differences in knowledge of breast and bottle feeding. results: findings suggest 65% (n=117) of university students had no previous knowledge of breastfeeding practices. conclusion: breastfeeding information within the high school curriculum is needed to support evidence-informed preconception infant feeding choices and increase future parents' understanding of how breastfeeding works to assist them in meeting their future infant feeding goals and increase breastfeeding rates. keywords attitude, breastfeeding, infant, knowledge, students introduction infant feeding decisions made by parents can alter health outcomes for their children. breastfeeding promotes child survival and wellbeing and is recognized as the superior form of infant feeding due to its nutritional and immunological properties (unicef, 2018). for this reason, leading health authorities worldwide endorse the initiation of breastfeeding within the first hour after birth, exclusive breastfeeding until 6 months of age, and continuation of breastfeeding once solids are introduced until 2 years of age and beyond (unicef, 2018; world health organization, 2021). health benefits of breastfeeding for babies include protection against infections and malocclusion, increases in intelligence, and reduced probability of being overweight and developing diabetes (victora et al., 2016). additional benefits for women who breastfeed are decreased risk of breast cancer, ovarian cancer, and type two diabetes as well as improved birth spacing (victora et al., 2016). in 2017-2018, only approximately 35% of canadian babies were exclusively breastfed until 6 months (statistics canada, 2020). the reasons for discontinuing breastfeeding vary, however, lack of knowledge regarding breastfeeding and understanding the difference between feeding methods may be a contributing factor in a traditionally bottle-feeding culture. most infants are prematurely weaned due to breastfeeding difficulties 372 ihtp, 2(3), 371-384, 2022 cc by-nc-nd 4.0 issn 2563-9269 encountered rather than maternal choice (gianni et al., 2019). the lack of knowledge regarding the physiological process of breastfeeding may contribute to common breastfeeding problems such as sore nipples and insufficient milk supply (morrison et al., 2019). in a traditionally bottle-feeding culture, where the visual representation and advertising of breast milk substitutes inform the public on infant feeding, additional methods of education regarding human lactation may be required to provide people with accurate information about breastfeeding, why it is important, how it works and how to overcome common issues. additionally, most infant feeding decisions are made prior to conception (goulet et al., 2003; kavanagh et al., 2014; padmanabhan et al., 2016). thus, educating the public before decisions about pregnancy are made rather than specifically targeting expectant parents may be warranted. health curriculum is designed to help all students reach their full potential, develop the knowledge, skills, and perspectives they need to be informed, productive, caring, responsible, healthy, and active citizens in their communities and in the world (ministry of education, 2019). this should include teaching young people about the anatomy and physiology of reproduction, as well as making healthy choices around healthy eating and human development (ministry of education, 2019). this would require education about breastfeeding, which currently the school system does not consistently provide (opha, 2013; reyes et al., 2018). school is an ideal place for this information to be disseminated. having breastfeeding be included in reproductive health is certainly an important consideration for the students. the ontario public health association recommends: “breastfeeding is a life skill which requires prior knowledge and attitudinal acceptance. one primary way to increase the likelihood of later breastfeeding success and thereby increasing child health is to educate youth about breastfeeding concepts before they conceive and to expose students to experiences and conversation that presents breastfeeding as a normal, expected health behavior.” (opha, 2013) exploring university students’ breastfeeding education, experiences, knowledge, and attitude will assist in determining the general knowledge level and effectiveness of infant feeding information currently taught through the school system as well as through infant feeding messages in society. this knowledge can inform the development of school curriculum in this area, public health social marketing advertisements, and additional efforts to combat the information distributed through advertising breast milk substitutes. to increase breastfeeding rates, it is important to identify factors that may influence one’s intentions regarding infant nutrition (padmanabhan et al., 2016). many researchers have chosen young people as a target for examining this, as women often make the decision about whether they are going to breastfeed before they become pregnant (padmanabhan et al., 2016). among this population, it has been found that one’s intentions are associated with their knowledge of and attitudes toward breastfeeding (padmanabhan et al., 2016). subsequently, researchers have been studying breastfeeding knowledge and attitudes among university students to assess factors that may influence intentions and provide suggestions for what interventions may be needed to increase breastfeeding rates in the population (padmanabhan et al., 2016). studies across canada (fairbrother & stangerross, 2010), china (lou et al., 2014), india, (padmanabham et al., 2016), israel (natan et al., 2008), jordan (al-ali et al., 2013; hatamleh et al., 2018; nahla et al, , 2012); korea (kang et al., 2005), kuwait (ebrahim, et al., 2011), lebanon and syria (hamade et al., 2014), nigeria (ogunba & agwa, 2014), saudi arabia (khresheh, 2020; khriesat ismaile, 2017), and the usa (cheianu-marshall ford & rainville, 2018; dinour & bai, 2019; dodgson et al., choi, 2014; kavanagh et al., 2012; marrone et al., 2008; spear, 2006) have assessed breastfeeding knowledge and attitudes of university students. results suggest, students’ knowledge of breastfeeding is lacking (dinour & bai, 2019; nahla et al., 2012; spear, 2006). those who have received breastfeeding education tend to be more knowledgeable, however, misconceptions are still common (kang et al., 2005; khriesat & ismaile, 2017). as well, many university students have negative 373 ihtp, 2(3), 371-384, 2022 cc by-nc-nd 4.0 issn 2563-9269 attitudes toward breastfeeding (ebrahim et al., 2011; khriesat & ismaile, 2017). nahla et al. (2012) identified that negative attitudes were related to misconceptions. in addition, as mentioned above, breastfeeding knowledge and attitudes influence future intentions (padmanabhan et al., 2016). university students with negative attitudes and misconceptions about breastfeeding were less likely to report intent to breastfeed in the future (nahla et al., 2012). although trends were identified in this body of literature suggesting increased breastfeeding knowledge and attitude leads to increased breastfeeding intentions, the breastfeeding knowledge and attitude measures used in the studies varied, with most measures not being validated tools. research using validated tools is warranted. additionally, no studies have been published regarding the breastfeeding knowledge, attitudes, and intention of both female and male canadian university students, identifying a gap in this area. study purpose the purpose of this non-experimental descriptive cross-sectional study was to determine the breastfeeding knowledge and infant feeding attitude using validated scales (comprehensive breastfeeding knowledge scale, abbass-dick et al., 2020; infant feeding attitude scale, de la mora et al., 1999), as well as breastfeeding intentions, exposure, and students’ perceptions regarding the differences between breast and bottle feeding in a university in ontario, canada. methods sample, procedure, ethics a convenience sample was recruited for this study from a large, urban university in ontario, canada. the target population included both undergraduate and graduate students. eligible students met the inclusion criteria which was being enrolled as a student in the university on a full or part time basis. emails were sent out via the registrar’s office to all students currently enrolled in the university in march 2020. a reminder email was sent 2 weeks later. this recruitment method was designed to capture diverse members of the population, in relation to gender, age, parental status, degree being completed, years in the program, and faculty. recruitment material provided a description of the study, the study teams contact information, and the link to the online consent form and questionnaire. upon receiving the link to the study materials, an online consent form was provided and once completed, the online questionnaire was made available for the student to complete. this study was conducted following ethics approval from the university (#15790). data collection baseline demographic variables all participants completed an online baseline questionnaire that included demographic and breastfeeding variables such as age, gender, born in canada, degree completing, faculty and year of program. breastfeeding variables all participants completed questions regarding their parental and breastfeeding history, infant feeding intentions and cultural norm, comfort with breastfeeding in public, and breastfeeding education, breastfeeding curriculum, and preferences for receiving health education. breastfeeding knowledge this outcome was assessed using the comprehensive breastfeeding knowledge scale (cbks). the cbks is a 28 items self-report instrument designed to assess breastfeeding knowledge. items were rated on a 3-point scale, disagree (1) unsure (2) agree (3). negatively worded items were reversed scored to produce a summative score ranging from 28 to 84, with higher scores reflecting greater knowledge. this scale has established reliability and validity in the parent population (abbass-dick et al, 2020). the cronbach’s alpha in for this scale in the data collected for this study was 0.82. 374 ihtp, 2(3), 371-384, 2022 cc by-nc-nd 4.0 issn 2563-9269 infant feeding attitude this outcome was assessed using the iowa infant feeding attitude scale (iifas), a 17 items self-report instrument (de la mora et al., 1999). this scale was developed to assess attitudes towards various dimensions of infant feeding. items were rated on a 5-point scale to produce a summative score ranging from 17 to 85, with lower scores reflecting a preference for formula feeding and higher scores reflecting a preference for breastfeeding. the scale has been used with student populations (al-ali et al., 2013; marrone et al., 2008; nahla et al., 2012). cronbach’s alpha for this scale in the data collected for this study was 0.77. perception of infant feeding mechanisms one open ended question was asked to determine participants' understanding of the difference between infant feeding methods, “in your own words, how do you think the way the baby sucks at the breast and receives milk differs or is the same as bottle feeding?” analysis data were analyzed with spss version 27. a 2-sided significant level of 0.05 was utilized for all study outcomes. for dichotomous data, the frequencies and percentages were calculated and differences between groups examined using pearson chi square tests. for continuous data, means (m) and standard deviations (sd) were calculated and differences between groups were examined using independent 2sample t-tests. open ended questions were analyzed using content analysis to generate emerging patterns and trends. for any responses that were left blank on the cbks and iifas scales, the mean score was substituted (score = unsure). this allowed for the utilization of collected data in an incomplete dataset which is consistent with reported techniques for handling missing data (kang, 2013). frequencies were used to determine scale items answered most correctly, incorrectly, or that the participants were unsure of. demographic and breastfeeding experience variables were analysed to determine differences in knowledge and attitude scored between groups. results participant characteristics a sample (n=179) of eligible students reviewed the detailed explanation and agreed to participate (table 1). most participants were female (79.9%), enrolled in an undergraduate degree (79.2%), born in canada (79.9%), not yet parents (76.5%). most participants indicated the cultural norm was to feed a combination of breastmilk and formula (58.1%). eighty-four percent were planning to breastfeed and 33% had previously received breastfeeding education. most participants had seen someone breastfeeding in public (n=162, 90.5 %) and were comfortable with breastfeeding in public (n=155, 87.1 %). breastfeeding knowledge comprehensive breastfeeding knowledge scale scores (m=68.04, s.d. 7.4: range 52-84) were assessed with subscales calculated (correcting misconceptions m=26.5. s.d. 3.63; range 19-33; persisting through challenges m=23.8, s.d. 3.06; range 17-30; and, maintaining milk supply m=17.7, s.d. 2.33; range 11-21). when the correct answers were calculated for each participant, the mean score was 16/28 or 57%. the items with the most correct answers, least correct answers and most unsure answers are displayed in table 2. infant feeding attitude the mean score on the iowa infant feeding attitude scale (iifas), was 62.1 (s.d 8.6; range 47-83). the most positive responses toward breastfeeding were found for items related to mother infant bonding (item #3), women breastfeeding in public places (item #8), breastmilk being cheaper than formula (item #16) (table 3). the most positive responses toward formula were for questions related to convenience (item #2), feeding methods not being related to joys of motherhood (item #9) and formula is as healthy as breastmilk (item #14). the items with the most unsure responses related to iron content in 375 ihtp, 2(3), 371-384, 2022 cc by-nc-nd 4.0 issn 2563-9269 breastmilk (item #4), formula fed babies being overfed (item #5) verses breastfed babies being overfed (item #10). breastfeeding experiences and perceptions most students had been breastfed as a child (72.1%), had seen someone breastfeed (90.5%), were comfortable with seeing someone breastfeeding in public (87.1%), and 63.1% indicated breastfeeding in public was socially accepted in their culture. although breastfeeding was reported by the majority as a cultural norm for feeding infants (n=164, 91.6%) 63.4% of them indicated this was combined with formula feeding (n=104, 63.4%). fifty-nine participants (33%) indicated they had received prior breastfeeding education. most of this education was received in the hospital (n=21, 25%), in school (n=19, 22.6%) or in a prenatal class (n=12, 14.3%). when asked if breastfeeding education should be taught in high school (n= 156, 87.2%) or university, 60.3% (n=108) replied ‘yes’. health (n=76, 50%), family studies (n=19, 12.7%), science (n=16, 10.7%) and social sciences and humanities (n=15, 10%) were the more frequently selected courses in which breastfeeding content should be included. when asked about their preference for receiving health education such as breastfeeding education, the mode most frequently selected was a class facilitated by a health care provider (n=95, 53.1%) followed by online resources (websites) (n=50, 27.9%). differences in knowledge and attitude scored between groups based on demographics and breastfeeding experiences are presented in table 4. perception of breastfeeding versus bottle feeding mechanism the open-ended question “how do you think the way the baby sucks at the breast and receives milk differs or is the same as bottle feeding?” was answered by 149 (83.2%) participants. responses were found in three categories (1) breastfeeding and bottle feeding are the same (n=14, 9.4%) (2) not sure if breastfeeding and bottle feeding are different (n=12, 8.05%), and (3) breastfeeding and bottle feeding are different (n=123, 82.6%). participants who felt that breastfeeding worked in the same way as bottle-feeding stated, “it doesn’t matter for babies” and “the baby doesn’t know the difference i imagine”. some participants believed the shape of a nipple on a bottle was the same as the shape of a breast nipple, with one participant stating, “the sucker on the bottle is shaped similarly to a nipple” and another participant saying, “i feel as if the bottle was made to imitate the nipple and how it is received is the same”. participants who were not sure about the similarities of bottle feeding and breastfeeding stated, “i have no idea or experience with this”, “i have literally no idea” and “it is different but not sure how”. for participants who felt breastfeeding and bottle feeding were different in the way milk is delivered, several themes emerged in the responses, which included: 1) differences in how milk is delivered to a baby (including differences in flow speed and consistency, the way a baby regulates breastfeeding, ease of feeding for babies who are bottle fed versus breastfed), 2) differences in latch and feel, and 3) differences in maternal child bonding and closeness. participants believed there were differences in flow speed saying that “[breastfeeding] is slower and more inconsistent in the milk flow” participants also felt that there were differences in the way the baby regulates breastfeeding by saying “the baby can control the flow easier at the breast” and “in breastfeeding, the amount and pace is determined by the baby”. there were differences in perceptions in the ease of feeding for babies who are bottle fed versus breastfed with most comments indicating bottle feeding is easier such as “bottles demand less effort from baby” and “the baby needs to work harder for the breast milk and have more of a suction whereas milk that is received from a bottle is easier for the infant to get”. participants also noted differences in the latch between breastfeeding and bottle-feeding stating, “the latch during breastfeeding would be wider” as well as differences in the feel of breast and bottle feeding such as “sucking [from] bottle feeding will be different because the material is made out of plastic versus the breast is a natural part of our evolutionary history when feeding a baby in nature”. participants also noted differences in maternal child 376 ihtp, 2(3), 371-384, 2022 cc by-nc-nd 4.0 issn 2563-9269 bonding and closeness through the following statement breastfeeding “is better at promoting mother-infant attachment”. relationship between attitude, knowledge, and demographic variables the cbks and iifas scores were significantly correlated r=.67 (p<0.01). table 4 shows that there was a significant difference in scores among male versus female students; being in the faculty of health sciences compared to the other faculties, intending to breastfeed, having received breastfeeding education, and being a parent. there were no differences related to being born in canada, having been breastfed as a child, completing an undergraduate degree. there was no difference in scores between students who indicated breastfeeding should be taught in high school and those that did not, however, those who thought it should be in university curriculum had statistically significant higher cbks and iifa scores (cbks-m 69.41, sd 8.12 compared to m 66.0, sd 5.85; p=0.001; iifasm 64.43, sd 8.83 compared to m 58.64, sd 6.78; p<0.001). students who indicated exclusive breastfeeding to be the norm in their culture had statistically significant higher attitude scores compared to those for which combined feeding or formula were the norm (m 65.12, s.d 7.98 compared to m 60.87, s. d. 8.52; p=0.02). discussion one hundred and seventy-nine students, including undergraduate and graduate students, completed the survey with students representing all faculties. most students had witnessed previous breastfeeding and considered it a cultural norm. most students indicated they had intended to have their child breastfed. the breastfeeding knowledge (cbks) scores were lower in this sample of university students compared to expectant parents scores (abbass dick et al., 2020) (full 28 item scale m=68.04, s.d, 7.4: range 52-84 compared to m=72.25, s.d, 6.5) including correcting misconceptions (m=26.5. s.d. 3.63; compared to m=28.24. s.d. 3.3) persisting through challenges (m=23.8, s.d, 3.06; m=25.23, s.d, 2.9) and maintaining milk supply (m=17.7, 2.33 s.d. compared to m=18.78, s.d.1.9). low knowledge scores are consistent with a systematic review by yang et al. (2018), which included fourteen studies and found that students lacked knowledge about breastfeeding even after completing maternal and child health unit of study. among students, knowledge of the benefits of breastfeeding was found to be high with knowledge of physiology and management of breastfeeding to be lower. this was similar in our study as student items with higher scores related to breastfeeding benefits, as it promotes bonding, strengthens the baby’s immune system and is cheaper than formula. however, participants in our study scored lower for questions related to physiology leading to common concerns such as mastitis, sore nipples, as well as the impact of father’s formula feeding, the number of times to feed or how to hand express. the attitude scores suggest further knowledge of the nutritional value of breast milk compared to formula is needed. our study found that students in the faculty of health sciences had the highest breastfeeding knowledge scores when compared to students in all other faculties. this is consistent with previous research that found students from science, healthrelated majors, and medicine were more knowledgeable on breastfeeding/lactation in comparison to students in other faculties and programs (hamade et al., 2014; hatamleh et al., 2018; kang et al., 2005; natan et al., 2008; ogunba & agwa, 2014; padmanabhan et al., 2016). interestingly, in our sample, when each faculty was individually assessed, the students in the faculty of education had the highest scores. participants in our study had mean infant feeding attitude scores (m=62.1, s.d 8.6) that were slightly higher compared to other published studies with university students. hamid and yahya, (2018) found the mean infant feeding attitude scores among undergraduate university students (n=377) in selangor, malaysia to be 60.64 (s.d 5.02). similarly, jefferson (2017) found that mean infant feeding attitude scores to be 59 (s.d. 7.47) among college students (n=696) at the university of missouri, united states. 377 ihtp, 2(3), 371-384, 2022 cc by-nc-nd 4.0 issn 2563-9269 our study also found there were significant differences in knowledge and attitude scores between male versus female students. this finding is consistent with other studies which showed that female students (n=182) had higher scores for breastfeeding knowledge (9.08 vs 8.56, p=.02), compared to male students (n=64) at the university of tennessee at knoxville, united states (kavanagh et al., 2012). similarly, marrone et al. (2008) found that female students (n=111) had significantly higher knowledge scores (f (1, 21.53) = 6.46, p=.02) compared to male students (n=50) at the university of north dakota, united states. conversely, hatamleh et al.’s (2018) study conducted with university students in jordan found that male students (n=146) had somewhat higher breastfeeding knowledge than female students (n=272) although there was no significant difference between genders (t=1.467, p< .143). as well, a chinese study by tarrant & dodgson (2007) found no significant differences in breastfeeding knowledge scores (71.0% vs. 71.1%; p = .99) nor attitudinal differences (2.64 [ sd = .26] vs. 2.60 [ sd =.24]; p = .07) between male (n=186) and female (n= 211) university students. strengths and limitations strengths of our study include the use of a validated breastfeeding knowledge scale and the inclusion of both undergraduate and graduate students. there are notable limitations of this study which can decrease the generalizability of the findings to the broader population. first, since this was a crosssectional design, we are unable to predict future behavior. second, since a convenience sample of undergraduate and graduate students was used, it is likely, the students who completed the study had more interest and favorable attitudes regarding breastfeeding and these findings may appear higher than the actual breastfeeding attitudes, knowledge, and intentions of the student population. additionally, there was no sample size calculation, and the sample was recruited from one urban university. therefore, it is unclear if the breastfeeding knowledge and attitudes are representative of students in different universities or non-university students and those in rural areas. little information was collected related to the students’ culture and ethnicity; these factors may impact breastfeeding knowledge, attitudes, and intentions and this should be further explored in future studies. implications and recommendation overall, results of this study suggest that breastfeeding education should be included in high school curriculum given that infant feeding decisions are formed prior to conception and even as early as adolescence (goulet et al., 2003). these decisions may influence future breastfeeding intentions, therefore commencing breastfeeding education during adolescence could increase knowledge and attitudes later in life (goulet et al., 2003). only 22.6% of our students had received breastfeeding education in school and 87% indicated it should be taught in high school. future research should focus on education interventions that target both adolescent males and females to increase their breastfeeding knowledge and attitudes. studies have shown breastfeeding knowledge and attitudes of male partners significantly influences breastfeeding initiation and duration rates (arora et al., 2000; rempel & rempel, 2004). additionally, a canadian study of female secondary students (n=77) showed that a single school-based breastfeeding educational intervention for high school students significantly increased breastfeeding knowledge (p < 0.001), attitudes (p < 0.001), and future intentions to exclusively breastfeed (p < 0.05; reyes et al., 2019). having time within the school health curriculum to teach new content can be challenging since the curriculum is already full of equally important topics. therefore, being able to provide a short, yet effective, intervention will be more feasible and has been recommended in other studies (reyes et al, 2019; zeller, 2016). school curriculum should also consider cultural variations in breastfeeding norms as they may impact student attitudes, knowledge, and intentions (reyes et al, 2019). in addition to the inclusion of breastfeeding information in school curriculum, health promotion 378 ihtp, 2(3), 371-384, 2022 cc by-nc-nd 4.0 issn 2563-9269 campaigns should target adolescent males and females to address misconceptions. social media may be a feasible and convenient way of disseminating breastfeeding information to younger populations. other recommendations include ensuring breastfeeding support resources are available at all university campuses, such as a breastfeeding resource center and having a designated room within each faculty building to breastfeed and/or pump breastmilk. faculty members and staff should be aware of such resources and promote them to students. conclusion this study demonstrates that university students in canada received little breastfeeding education in school and have low knowledge and attitude scores with some misconceptions regarding its importance how breastfeeding works. since exclusive breastfeeding rates to 6 months in canada are low, it is important to increase knowledge and improve attitudes towards breastfeeding. including credible breastfeeding education within the high school curriculum is important to promote evidence informed infant feeding choices during the preconception period. increasing parents' understanding of how breastfeeding works can assist them in meeting their future infant feeding goals and increase breastfeeding rates. references abbass-dick, j., newport, a., pattison, d., sun, w., kenaszchuk, c., & dennis, c. (2020). development, psychometric assessment, and predictive validity of the comprehensive breastfeeding knowledge scale. midwifery, 83, 102642-102642. https://doi.org/10.1016/j.midw.2020.1026 42 al-ali, n., hatamleh, r., & khader, y. (2013). female public jordanian university undergraduate students' intentions and attitudes toward breastfeeding: application of self-objectification theory. breastfeeding review, 21(3), 31-42. arora, s., mcjunkin, c., wehrer, j., & kuhn, p. (2000). major factors influencing breastfeeding rates: mother's perception of father's attitude and milk supply. pediatrics, 106(5), e67e67. https://doi.org/10.1542/peds.106.5.e 67 cheianu-marshall, o., ford, o., & rainville, a. (2018). breastfeeding knowledge, attitudes, and intentions of university students. journal of academy of nutrition and dietetics, 118(9): 81. doi: http://doi.org/10.1016/j.jand.2018.06.078 de la mora, a., russell, d. w., dungy, c. i., losch, m., & dusdieker, l. (1999). the iowa infant feeding attitude scale: analysis of reliability and validity. journal of applied social psychology, 29(11), 2362-2380. https://doi.org/10.1111/j.15591816.1999.tb00115.x dinour, l., & bai, y. (2019). is breast best? knowledge and attitudes of breastfeeding and lactation supports on a university campus. journal of the academy of nutrition and dietetics, 119(9): a67. doi: https://doi.org/10.1016/j.jand.2019.06.190 dodgson, j.e., bloomfield, m., & choi, m. (2014). are health science students' beliefs about infant nutrition evidence-based? nurse education today, 34(1): 92-99. doi: https://doi.org/10.1016/j.nedt.2013.02.01 5 ebrahim, b., al-enezi, h., al-turki, m., al-turki, a., alrabah, f., hammoud, m.s., & al-taiar, a. (2011). knowledge, misconceptions, and future intentions towards breastfeeding among female university students in kuwait. journal of human lactation, 27(4): 358-366. doi: https://doi-org.uproxy.library.dcuoit.ca/10.1177/0890334411411163 fairbrother, n., & stanger-ross, i. (2010). reproductive-aged women’s knowledge and attitudes regarding infant-feeding practices: an experimental evaluation. journal of human lactation, 26(2), 157167. https://doi.org/10.1177/0890334409 352853 gianni, m. l., bettinelli, m. e., manfra, p., sorrentino, g., bezze, e., plevani, l., cavallaro, g., https://doi.org/10.1016/j.midw.2020.102642 https://doi.org/10.1016/j.midw.2020.102642 https://doi.org/10.1542/peds.106.5.e67 https://doi.org/10.1542/peds.106.5.e67 http://doi.org/10.1016/j.jand.2018.06.078 https://doi.org/10.1111/j.1559-1816.1999.tb00115.x https://doi.org/10.1111/j.1559-1816.1999.tb00115.x https://doi.org/10.1016/j.nedt.2013.02.015 https://doi.org/10.1016/j.nedt.2013.02.015 https://doi-org.uproxy.library.dc-uoit.ca/10.1177/0890334411411163 https://doi-org.uproxy.library.dc-uoit.ca/10.1177/0890334411411163 https://doi.org/10.1177/0890334409352853 https://doi.org/10.1177/0890334409352853 379 ihtp, 2(3), 371-384, 2022 cc by-nc-nd 4.0 issn 2563-9269 raffaeli, g., crippa, b. l., colombo, l., morniroli, d., liotto, n., roggero, p., villamor, e., marchisio, p., & mosca, f. (2019). breastfeeding difficulties and risk for early breastfeeding cessation. nutrients, 11(10), 2266. https://doi.org/10.3390/nu11102266 goulet, c., lampron, a., marcil, i., & ross, l. (2003). attitudes and subjective norms of male and female adolescents toward breastfeeding. journal of human lactation, 19(4), 402-410. https://doi.org/10.1177/089033440325833 hamade, h., naja, f., keyrouz, s., hwalla, n., karam, j., al-rustom, l., & nasreddine, l. (2014). breastfeeding knowledge, attitude, perceived behavior, and intention among female undergraduate university students in the middle east: the case of lebanon and syria. food and nutrition bulletin, 35(2), 179-190. https://doi.org/10.1177/156482651403500 204 hamid, s. b. a., & yahya, n. (2018). knowledge,attitude, prior exposure and intention to breastfeed among undergraduate university students. journal of clinical and health sciences, 3(2), 26-35. https://doi.org/10.24191/jchs.v3i2.7083. hatamleh, r., maghaydah, s. s., abuhammad, s., & rababah, h. (2018). knowledge, attitudes and future intentions towards breastfeeding among undergraduate students at a jordanian public university. evidence based midwifery, 16(4), 136-142. jefferson, u. t. (2017). breastfeeding exposure, attitudes, and intentions of african american and caucasian college students. journal of human lactation, 33(1), 149-156. https://doi.org/10.1177/089033441667934 kang, h. (2013). the prevention and handling of the missing data. korean journal of anesthesiology, 64(5), 402406. https://doi.org/10.4097/kjae.2013.64. 5.402 kang, n., song, y., & im, e. (2005). korean university students’ knowledge and attitudes toward breastfeeding: a questionnaire survey. international journal of nursing studies, 42(8): 863-870. doi: https://doi.org/10.1016/j.ijnurstu.2005.01. 003 kavanagh, k.f., lou, z., nicklas, j.c., habibi, m.f., & murphy, l.t. (2012). breastfeeding knowledge, attitudes, prior exposure, and intent among undergraduate students. journal of human lactation, 28(4): 556-64. doi: http://.doi.10.1177/0890334412446798 khresheh, r. (2020). knowledge and attitudes toward breastfeeding among female university students in tabuk, saudi arabia. nursing and midwifery studies, 9(1), 4350. https://doi.org/10.4103/nms.nms_35_ 19 khriesat, w., & ismaile, s. (2017). negative attitudes & misinformation to breastfeeding among young generation in a nursing program. australasian medical journal, 10(11). doi: https://doaj.org/article/58678b6c81b64612 adf2f574682dcb49 lou, z., zeng, g., orme, j.g., huang, l., lui, f., pang, x., & kavanagh, k.f. (2014). breastfeeding knowledge, attitudes, and intention in a sample of undergraduate students in mainland china. journal of human lactation, 30(3): 331-339. https://doi.org/10.1177/089033441452605 8 marrone, s., vogeltanz-holm, n., & holm, j. (2008). attitudes, knowledge, and intentions related to breastfeeding among university undergraduate women and men. journal of human lactation, 24(2):186-192. doi: https://doi.org/10.1177/089033440831607 2 ministry of education. (2019). the ontario curriculum: grades 1-8. health and physical education. http://www.edu.gov.on.ca/eng/curriculum /elementary/ 2019-health-physical-education-grades1to8.pdf morrison, a., gentry, r. & anderson, j. (2019). mothers' reasons for early breastfeeding https://doi.org/10.3390/nu11102266 https://doi.org/10.1177/089033440325833 https://doi.org/10.1177/156482651403500204 https://doi.org/10.1177/156482651403500204 https://doi.org/10.4097/kjae.2013.64.5.402 https://doi.org/10.4097/kjae.2013.64.5.402 https://doi.org/10.1016/j.ijnurstu.2005.01.003 https://doi.org/10.1016/j.ijnurstu.2005.01.003 https://doi.org/10.4103/nms.nms_35_19 https://doi.org/10.4103/nms.nms_35_19 https://doaj.org/article/58678b6c81b64612adf2f574682dcb49 https://doaj.org/article/58678b6c81b64612adf2f574682dcb49 https://doi.org/10.1177/0890334414526058 https://doi.org/10.1177/0890334414526058 https://doi.org/10.1177/0890334408316072 https://doi.org/10.1177/0890334408316072 380 ihtp, 2(3), 371-384, 2022 cc by-nc-nd 4.0 issn 2563-9269 cessation. mcn, the american journal of maternal/child nursing, 44 (6), 325-330. doi: 10.1097/nmc.0000000000000566. nahla, a., reem, h., & khader, y. (2012). intentions and attitudes towards breastfeeding among undergraduate female students at a public jordanian university. evidence based midwifery, 10(4): 119-124. natan, m.b., haikin, t., & wiesel, r. (2018). breastfeeding knowledge, attitudes, intentions, and perception of support from educational institutions among nursing students and students from other faculties: a descriptive cross-sectional study. nurse education today, 68, 6670. doi: https://doi.org/10.1016/j.nedt.2018.05.02 6 ogunba, b. o., & agwo, e. o. (2014). knowledge, attitude and intending practice of female undergraduates about breastfeeding. african journal of food, agriculture, nutrition, and development, 14(4), 9039-9054. opha. (2013). ontario’s education strategy: “from great to excellent”. response to the ministry of education re: curriculum. https://opha.on.ca/wpcontent/uploads/2020/09/ministry-ofeducation-response-nov-15-2013final.pdf?ext=pdf padmanabhan, r., thulasingam, m., & chinnakalai, p. (2016). female college students knowledge, attitude and future intention towards breastfeeding: implications for advocacy. journal of clinical and diagnostic research, 10(11), lc11lc14. https://doi.org/10.7860/jcdr/2016/ 20675.8904 rempel, l. a., & rempel, j. k. (2004). partner influence on health behavior decisionmaking: increasing breastfeeding duration. journal of social and personal relationships, 21(1), 92111. https://doi.org/10.1177/02654075040 39841 reyes, c., barakat-haddad, c., barber, w., & abbassdick, j. (2019). investigating the effectiveness of school-based breastfeeding education on breastfeeding knowledge, attitudes and intentions of adolescent females. midwifery, 70, 64-70. https://doi.org/10.1016/j.midw.2018.12.01 0 spear, h. j. (2006). baccalaureate nursing students’ breastfeeding knowledge: a descriptive survey. nurse education today, 26(4), 332337. https://doi.org/10.1016/j.nedt.2005.10.01 4 statistics canada. (2020). table 13-10-0113-01 health characteristics, two-year period estimates https://www150.statcan.gc.ca/t1/tbl1/en/t v.action?pid=1310011301 tarrant, m., & dodgson, j. e. (2007). knowledge, attitudes, exposure, and future intentions of hong kong university students toward infant feeding. journal of obstetric, gynecologic, and neonatal nursing, 36(3), 243-254. https://doi.org/10.1111/j.15526909.2007.00144. unicef (2018). breastfeedinga mother’s gift for every child. retrieved from https://www.unicef.org/publications/files/ unicef_breastfeeding_a_mothers_gift_fo r_every_child.pdf victora, c. g., bahl, r., barros, a. j., frança, g. v., horton, s., krasevec, j., ... & group, t. l. b. s. (2016). breastfeeding in the 21st century: epidemiology, mechanisms, and lifelong effect. the lancet, 387(10017), 475-490. world health organization. (2021). infant and young child feeding. https://www.who.int/news room/fact-sheets/detail/infant-andyoungchild-feeding yang, s., salamonson, y., burns, e., & schmied, v. (2018). breastfeeding knowledge and attitudes of health professional students: a systematic review. international breastfeeding journal, 13(1), 8-8. https://doi.org/10.1186/s13006-018-01531 zeller, c. l. (2016). effects of education on breastfeeding knowledge and attitudes among middle school students. health education journal, 75(4), 501-510 https://doi.org/10.1177/001789691559753 1 381 ihtp, 2(3), 371-384, 2022 cc by-nc-nd 4.0 issn 2563-9269 table 1. demographic and breastfeeding variables demographics participants (n=179) n (%) gender female male 143 (79.9) 35(19.6) age categories 20 and under 21-26 over 26 40 (22.3) 75 (41.9) 64(35.8) born in canada yes no 143 (79.9) 36 (20.1) degree undergraduate masters phd 142 (79.2) 30 (16.8) 7 (3.9) year in degree 1st 2nd 3rd 4th 5th + 51 (28.5) 36 (20.1) 35(19.6) 46(25.7) 11 (6.1) faculty business education engineering energy systems health sciences social sciences 16 (8.9) 20 (11.2) 5 (2.8) 16 (8.9) 52 (29.1) 36 (20.1) parent status yes i am expecting my first child no 40 (22.4) 4 (2.2) 135 (75.4) 382 ihtp, 2(3), 371-384, 2022 cc by-nc-nd 4.0 issn 2563-9269 table 2. comprehensive breastfeeding knowledge scale scores item disagree unsure agree items with the most correct responses 28. breastfeeding promotes mother-infant bonding and emotional attachment. 0 (0%) 6 (3.4%) 173 (96.6%) 2. breastfeeding early after birth, spending time skin to skin and having the mother and baby room-in together, day and night, are supportive hospital practices that help with establishing breastfeeding. 2 (1.1%) 10 (5.6%) 167 (93.3%) 25. breast milk contains germ fighting properties which protect a baby from infections and strengthen his/her immune system. 2 (1.1%) 25 (14%) 152 (84.9%) 13. watching the output (pees and poos) and energy level of the baby are good ways of monitoring if the baby is getting enough breast milk. 4 (2.2%) 26 (14.5%) 149 (83.2%) 17. small breasts will not make as much milk as larger breasts (reversescored) 147 (82.1%) 23 (12.8%) 9 (5%) items with least correct responses 24. if a mother has mastitis (breast infection) she should continue to breastfeed her baby. 115 (64.2%) 35 (19.6%) 29 (16.2%) 3. it is normal for breastfeeding to hurt. (reverse-sored) 44 (26.4%) 76 (42.5%) 59 (33%) 8. formula feeding is a good way of letting fathers/partners care for their breastfed babies. (reverse-scored) 58 (32.4%) 48 (26.8%) 73 (40.8%) 22. a sore or cracked nipple is an indication of incorrect latch. 44 (24.6%) 70 (39.1%) 65 (36.3%) 1. when a mother is sick with a flu or cold, she should continue to breastfeed her baby as this may prevent her baby from getting sick. 37 (20.7%) 70 (39.1%) 72 (40.2%) items with most unsure responses 6. babies should be breastfed at least 8 times in a 24-hour period to support an adequate milk supply. 1 11 (6.1%) 86 (48%) 82 (45.8%) 3. it is normal for breastfeeding to hurt. (reverse-scored) 3 44 (26.4%) 76 (42.5%) 59 (33%) 10. learning the skill of hand expression will enable mothers to remove breast milk if needed. 2 10 (5.6%) 76 (42.5%) 93 (51.9%) 7. jaundice is best prevented with frequent breastfeeding and the baby having a good output (pees and poos). 2 22 (12.3%) 74 (41.3%) 83 (46.4%) 26. breastfeeding can decrease a mother's risk of developing breast, uterine and ovarian cancers. 3 28 (15.6%) 72 (40.2%) 79 (44.1%) 383 ihtp, 2(3), 371-384, 2022 cc by-nc-nd 4.0 issn 2563-9269 table 3. iowa infant feeding attitude scale scores item strongly disagree disagree unsure agree strongly agree 1. the benefits of breast milk last only as long as the baby is breastfed. 69 (38.8%) 53 (29.8%) 30 (16.9%) 15 (8.4%) 11 (6.2%) 2. formula feeding is more convenient than breastfeeding. 38 (21.3%) 31 (17.4%) 48 (27%) 49 (27.5%) 12 (6.7%) 3. breastfeeding increases mother infant bonding. 0 (0%) 1 (0.6%) 10 (5.6%) 34 (19.1%) 133 (74.7%) 4. breast milk is lacking in iron. 42 (23.6%) 41 (23%) 75 (42.1%) 14 (7.9%) 6 (3.4%) 5. formula fed babies are more likely to be overfed than breastfed babies. 12 (6.7%) 24 (13.5%) 68 (38.2%) 47 (26.4%) 27 (15.2%) 6. formula feeding is the better choice if the mother plans to go out to work. 38 (21.3%) 48 (27%) 44 (24.7%) 46 (25.8%) 2 (1.1%) 7. mothers who formula feed, miss one of the great joys of motherhood. 53 (29.8%) 37 (20.8%) 37 (20.8%) 23 (12.9%) 28 (15.7%) 8. women should not breastfeed in public places such as restaurants. 118 (66.3%) 33 (18.5%) 15 (8.4%) 9 (5.1%) 3 (1.7%) 9. breastfed babies are healthier than formula fed babies. 19 (10.7%) 26 (14.6%) 44 (24.7%) 53 (29.8%) 36 (20.2%) 10. breastfed babies are more likely to be overfed than formula fed babies. 46 (25.8%) 56 (31.5%) 68 (38.2%) 5 (2.8%) 3 (1.7%) 11. fathers feel left out if a mother breastfeeds. 55 (30.9%) 64 (36%) 40 (22.5%) 16 (9%) 3 (1.7%) 12. breast milk is the ideal food for babies. 2 (1.1%) 5 (2.8%) 32 (18%) 49 (27.5%) 90 (50.6%) 13. breast milk is more easily digested than formula. 3 (1.7%) 6 (3.4%) 60 (33.7%) 35 (19.7%) 74 (41.6%) 14. formula is as healthy for an infant as breast milk. 35 (19.7%) 36 (20.2%) 50 (28.1%) 43 (24.2%) 14 (7.9%) 15. breastfeeding is more convenient than formula. 8 (4.5%) 44 (24.7%) 48 (27%) 38 (21.3%) 40 (22.5%) 16. breast milk is cheaper than formula. 1 (0.6%) 4 (2.2%) 12 (6.7%) 38 (21.3%) 123 (69.1%) 17. a mother who occasionally drinks alcohol should not breastfeed her baby. 21 (11.8%) 40 (22.5%) 40 (22.5%) 34 (19.1%) 43 (24.2%) (de la mora et al. 1999 pg 2380) 384 ihtp, 2(3), 371-384, 2022 cc by-nc-nd 4.0 issn 2563-9269 table 4. relationship between attitude, knowledge, and demographic variables cbks1 iifas2 m(s.d.) t (df) m(s.d.) t (df) male (n=35) 64.11 (5.60) 4.35 (67.84) p<0.01 58.71 (7.37) 2.66 (175) p=0.008 female (n=143*) 69.06 (7.55) 62.96 (8.69) faculty of health science(n=52) 72.42 (7.35) -5.403 (177) p<0.01 66.5 (8.22) -4.643 (176) p<0.01 other faculties (n=127*) 66.25 (6.76) 60.29 (8.06) intending to breastfeed (n=153)* 68.62 (7.54) 2.54 (177) p=0.006 63.11 (8.41) 3.90 (176) p<0.01 not intending to breastfeed (n=26) 64.65 (6.11) 56.27 (7.13) breastfeeding education (n=59) 74.42 (6.73) 9.997 (177) p<0.001 67.81(8.5) t=7.07 (176) p<0.001 no breastfeeding education=120*) 64.91 (5.59) 59.28 (7.12) a parent (n=40) 76.65 (4.78) 10.513 (177) p <0.01 70.55 (7.50) 8.34 (176) p<0.01 not a parent (n=139*) 65.57 (6.15) 59.66 (7.21) 1st year of study (n=51) 66.0 (6.34) -2.30 (176) p=0.023 59.18 (6.96) -2.90 (175) p=0.004 years 2-5+ of study (n=127)* 68.81 (7.75) 63.20 (8.87) over 26 (n=64)* 73.33 (7.14) 8.35 (176) p<0.001 67.51 (8.59) 6.73 (106.6) p<0.001 under 26 (n=114) 65.04 (5.86) 59.03 (6.90) 1 comprehensive breastfeeding knowledge scale (cbks) 2 iowa infant feeding attitude scale (iifas) *=iifas (=n-1) 1 ihtp, 2(3), si: 1-15, 2022 cc by-nc-nd 4.0 issn 2563-9269 listening to older adults’ perspectives on climate change: focus group study special issue: planetary health jordana salma1, savera aziz ali1, mckenzie h. tilstra2, ishwar tiwari2, charlene c. nielsen2, kyle whitfield2, allyson jones3, alvaro osornio vargas4, okan bulut5, shelby s. yamamoto2 1faculty of nursing, university of alberta, edmonton, alberta; 2school of public health, university of alberta, edmonton, alberta; 3department of physical therapy, faculty of rehabilitation medicine, university of alberta, edmonton, alberta; 4department of pediatrics, faculty of medicine & dentistry, university of alberta, edmonton, alberta; 5faculty of education, university of alberta, edmonton, alberta corresponding author: j. salma (sjordana@ualberta.ca) abstract this study explores climate change knowledge, attitudes, and experiences of community-dwelling older adults in edmonton, alberta. a qualitative descriptive methodology was used where thirty-nine older adults participated in one of six focus groups. a thematic data analysis helped identify three key themes synthesized from participants’ narratives: (a) making sense of climate change, (b) lack of leadership in managing climate change; and (c) actions to address climate change that include an emphasis on individual responsibility and valuing the contributions of older adults. older adults vary in their climate change literacy and levels of concern about climate change but share a commitment to environmental stewardship and community wellbeing. expanding opportunities for older canadians to learn about climate change and engage in climate initiatives will bring multiple benefits to this population and to the climate change movement. keywords ageism, aging, climate change, equity, narratives, urban background climate change is accelerating with the projected increase of 1.5 °c by 2050 resulting in significant impacts on the natural environment and consequent negative repercussions for human health (intergovernmental panel on climate change, 2018). the number of older adults 60 years of age and older will more than double by 2050 to constitute one out of every five people worldwide (world health organization, 2020). the impact of climate change on the health of older adults is of increasing concern (benevolenza & derigne, 2019). older adults can be more vulnerable to climate change than younger people due to lower physiological capacity, multimorbidity, and sensory and mobility deficits that are exacerbated by social and structural barriers within their living environments (tilstra et al., 2021). additionally, the unique needs and vulnerabilities of this population are not prioritized in mitigation efforts and disaster responses (ayalon et al., 2021). the ability to be prepared for, withstand, and recover from disasters and extreme weather events is contingent on the availability of tangible and emotional social support within familial and community social structures (chen at al., 2022). evidence continues to suggest that social isolation and loneliness can be alarmingly high in older age (world health organization, 2020) which severely limits access to resources for mitigation and adaptation to the impacts of climate change (rhoades et al., 2019). climate change can have exacerbated 2 ihtp, 2(3), si: 1-15, 2022 cc by-nc-nd 4.0 issn 2563-9269 negative impacts on older adults, but so can climate policies when the needs of populations experiencing multiple vulnerabilities fail to be considered (markkanen & anger-kraavi, 2019). focusing on older adults’ vulnerability to climate change due to age and other intersecting factors (multi-morbidity, poor housing, knowledge deficits, social isolation, lack of access to social and health services) results in a deficit-focused lens and exacerbates ageist attitudes in climate narratives. older adults are a diverse group with varying experiences, understandings, and responses to climate change based on their social locations (ostapchuk et al., 2015). older adults have a significant role to play in championing environmental stewardship and are motivated to leave a positive legacy for future generations (green et al., 2010; moser, 2016; zaval et al., 2015). furthermore, while the disproportionate risks for older adults due to climate change is often the focus of research (leyva et al., 2017; tilstra et al., 2021), older adults have demonstrated high adaptive capacity and resilience when responding to the impacts of climate change (abrahamson et al., 2008; miller & brockie, 2015). the significant impact that climate change has on older adults’ wellbeing and their capacity for contributing to climate solutions necessitates their engagement in climate change conversations (ayalon et al., 2021: tilstra et al., 2021). older adults are socially, politically, and economically integrated in their communities but are often excluded from climate planning (moser, 2016). their experiences of climate change and capacity for engagement in climate activism continue to be minimally explored (pillemer et al., 2021). this study identifies the climate change perspectives of older adults living in edmonton, alberta. by 2041, 32% of edmonton’s population is projected to be ≥55 years of age (city of edmonton, 2010). edmonton is the largest northernmost metropolis and the capital of alberta, canada. future climate change projections point to increasing extreme weather events, warming temperatures, and long-term ecosystem alterations that will require significant human adaptation (city of edmonton, 2018). engaging older adults in climate mitigation and adaptation initiatives is becoming increasingly important. the current study aims to identify older adults’ knowledge, attitudes, and experiences related to climate change in edmonton to better locate strategies for engagement and capacity building in this population. objectives the study explores older adults’ knowledge, attitudes, and experiences of climate change as part of a larger project aimed at creating a subpopulationspecific vulnerability index for the city of edmonton. knowledge refers to older adults’ understanding of the presence, causes, impacts, and action strategies related to climate change. attitudes is broadly conceptualized as emotions and related values about climate change, while experiences relate to the range of behaviors and responses to climate change in older adults’ daily lives. two research questions were identified: 1. what are older adults’ understandings and experiences of climate change in their communities? 2. how can older adults be better supported to prevent the negative health impacts of climate change? methods research design a qualitative descriptive methodology (morse, 2012) with focus groups (morgan, 1997) was used for this study to explore a wide range of perspectives where narratives of climate change could be told, refuted, and negotiated within a naturalistic group setting. a particular strength of using focus groups is in providing a space for participants to interact around a particular topic of interest, leading to more diverse understandings for both the researcher and participants (morgan, 1997). older adults are rarely invited to engage in climate change conversations (moser, 2016). the focus groups resulted in a space for discussion in a familiar social setting which was meaningful for participants (liamputtong, 2011). setting and study participants 3 ihtp, 2(3), si: 1-15, 2022 cc by-nc-nd 4.0 issn 2563-9269 recruitment occurred in the city of edmonton, alberta, canada as the site of the larger study. inclusion criteria were community-dwelling older adults who are 55 years of age and older and who identified as residents of edmonton. we chose the age 55 and older in recognition that for some communities the definition of being an older adult can be at a younger age, such as within some immigrant communities. convenience sampling was utilized where a recruitment email was sent out to seniors-service organizations. program coordinators at interested organizations reached out to older adults in their communities to identify interested participants. email recruitment posters were shared via email subscription lists across organizations but word-of-mouth, where coordinators reached out personally to older adults within their organizations, was the most effective form of recruitment. data collection data collection began after ethics approval was received from the university research ethics office (pro00096160) and all participants provided written informed consent. an initial interview guide was created using questions identified in previous qualitative published literature on climate change and community experiences with revisions made to focus on relevance to the local context. additional questions and probes were added as data collection progressed and important areas for exploration were identified (table 1). all older adult participants completed socio-demographic questionnaires. two authors (js, kw) with extensive focus group facilitation experience completed all focus group discussions between november 2019 and november 2021. focus group facilitators were researchers with expertise in climate change and healthy aging. this combination of expertise helped enable a nuanced discussion of climate change within the broader context of healthy aging. the seven group discussions lasted an average of two hours. the first two focus groups of 16 participants occurred in-person at community centers where participants were regular program attendees. the remaining five focus groups of 23 participants occurred virtually via zoom due to pandemic restrictions on in-person research activities. focus group size ranged from three to ten participants. while variations in the type and quality of data obtained via virtual approaches to data collected have been noted (davies et al., 2020), focus groups via zoom and in-person both yielded rich insights into the research questions. difficulties using zoom, not owning a microphone or camera for a computer, spotty connectivity, and noise interruptions were noted as challenges with using virtual focus groups in this study. all discussions were audio-recorded and transcribed verbatim by a certified transcriptionist and then subsequently verified by a graduate student. data analysis two researchers (js) and (kw) completed thematic data analysis using both inductive and deductive interpretations of the data via an iterative process (braun & clarke, 2006), with the aid of nvivo 12 software program (qsr international, 2018). initial codes were grouped into preliminary themes which were shared with other members of the research team and discussed in multiple group sessions. further refinement of the themes occurred via indepth questioning during subsequent data collection sessions and re-coding as understanding of the data expanded. audit trails and reflexive memos were used by facilitators and data analysts to increase the transparency of the research process (morse, 2012) and data analysis results were discussed via multiple team meetings. results in total, 39 older adults were recruited from six seniors service organizations to participate in this study. all participants were residents of edmonton and were diverse in terms of gender, age, education, migration status, and length of residence in the city (table 2). three main themes were synthesized from participants’ responses: (a) making sense of climate change, (b) lack of leadership in managing climate change, and (c) actions to address climate change (table 3). any names used in the results below have been changed to preserve the anonymity of participants. 4 ihtp, 2(3), si: 1-15, 2022 cc by-nc-nd 4.0 issn 2563-9269 making sense of climate change this theme captures participants’ perspectives of climate change. older adults in this study varied in their understanding of the causes and approaches needed to address climate change. an area of discussion across focus groups was whether climate change was reversible and whether human activity could have an impact on the progression of environmental and climate deterioration. while some older adults believed that climate change was anthropogenic and reversible, a smaller number disagreed. the following excerpt illustrates some older adults’ perceptions of uncertainty about the severity and causes of climate change: participant 8: i can be convinced, but i’d have to listen to a lot of people to convince me. where i grew up we’re talking about climate change, and is climate change something new? no, it’s not. when i grew up, and i was a kid, it was 40 below… participant 2: well, i just have a little thought. our dinosaurs, they didn’t have fossil fuels. they didn’t have all of this. and yet the climate changed, and buried them, and we started all over again. so, is it really our climate that’s bad, or is it just part of the process of earth? participant 6: well, in the 50s we were going back to the ice age… we weren’t going to be able to grow crops or do anything. now we’ve got global warming, and i don’t understand it at all. i don’t know where we’re going. (fg5) most participants were well informed about the impacts of climate change, although some were not always able to articulate the scientific processes causing these changes. participants drew from their lived experiences and from the media to describe these impacts. increased wildfires, flooding, droughts, and global warming were referenced by older adults pointing to this group generally being well informed about the environmental and weather impacts of climate change. lived experiences over the life course were particularly relevant to older adults where participants compared the weather and natural environment of their childhoods to current conditions, with changes over decades noted as evidence of climate change: not only up north, but i notice that the weather patterns have changed, globally. it is getting a lot hotter where we live here in alberta. and the summer’s a lot hotter, we seem to have more storms than ever before. (p1-fg4). if you look at the province of alberta, i can remember 50 years ago… i was raised on a farm and you could go onto a piece of land and there’d be a small stream, and you’d go in there in the winter and you’d clear all the trees off, and then you’d go, and you’d break your land up, and then within two years you could farm right over where that stream was. now all the moss, all your grasses, all your trees, everything that protects your ground is gone, and the water is gone. so, it’s warming up. (p2-fgd1). participants were asked about the impacts of climate change on health and, especially, on the health of older adults. they described asthma and breathing difficulties due to wildfires, and heat and cold-related impacts caused by extreme weather variations. living in a northern hemisphere city with long winters, the impacts of snow and ice on mobility and risks for falls in older adults was described. recent increases in the length and severity of heat waves were also discussed by older adults leading to wildfires that exacerbated chronic respiratory conditions and heat exposure-related issues: for me, like one of my colleagues here, the smoke and the environmental debris in the air really triggered my asthma bad this summer. i’ve used more asthma medications this summer and fall than [laughs] i’ve used in the previous ten years... the heat, i’m thinking of my 92-year-old in-laws, who live independently still, but they had to call an ambulance one day, because my father-in-law fainted. and they figured that in the end, that it was just as a result of heat, and he hadn’t been drinking enough. (p7-fg6) participants varied, however, in their ability to link health effects caused by weather and environmental changes to climate change. some participants immediately identified these impacts on health when 5 ihtp, 2(3), si: 1-15, 2022 cc by-nc-nd 4.0 issn 2563-9269 asked and others required prompting to make the connection between health and climate change: “but the actual change in the world’s temperature i don’t think has affected my health.” (p2-fg1) participants expressed the need to access reliable information about climate change, its effects, and ways to enhance resilience in mitigating the health impacts. they identified media, peers, and family as important sources of information on the topic with sometimes conflicting information being received from these sources. the need for additional information that is reliable and accessible was unanimously called for by this group: i want to add that this climate change thing is a new topic for the past 20 years, or 25 years, so most of the people do not exactly understand what exactly climate change is. and when we say, “climate change,” what do we understand? (p7-fg3). i do find the topic of climate change confusing, and i do get my information probably primarily from the news…you’ll hear different information and sometimes it contradicts each other. (p5-fgd2). overall, older adults who participated in this study were well informed of the climate crisis due to conversations about climate change proliferating in the media, politics, and social spheres. not all participants linked climate change to human activity or recognized the impacts of climate change on their personal health. most older participants were concerned about climate change and emphasized the need for climate action. the small number who reported not prioritizing climate change, described competing concerns (e.g., financial stability, health, access to necessities), beliefs that climate change was a naturally occurring phenomenon, or lack of information on the issue. for those who described feeling concerned, climate change was viewed as requiring human adaptation and collective efforts towards reversal. lack of leadership in managing climate change this theme captures the perceived role of government in managing climate and environmental crises. public transit, waste management, affordable housing, urbanization, deforestation, and carbon emissions were some of the areas of concern. participants described mismanagement or inaction by government, and distrust of climate change leaders with the needs of older adults not being considered in policy decisions: “seniors’ issues have always been on the back burner, whether it comes to civic government, provincial government, federal government. (p4-fg5)” participants emphasized that policies designed to address climate change should not disadvantage their communities: i’m a believer but i don’t think that we can change it (climate change). i think we just have to adapt to it. and it makes me very upset when all our politicians use that as their lever for everything that we do. (p2-fgd1) the needs of older adults who were low income or had mobility issues were highlighted as particularly relevant due to these groups being more likely to experience the detrimental impacts of both climate change and poor urban planning. for example, keeping the sidewalks clean from snow and ice and making public transportation easily accessible would decrease the need to use cars in urban settings. addressing the need of low-income older adults for accessible housing and air-conditioning in hot weather was another area of discussion: because a lot of the emphasis these days is that we seniors need to get out and socialize [yes]. making transportation more accessible...for low-income people, make sure they have air conditioning when it’s too hot, even if it has to be subsidized by the government. that would contribute to the seniors’ health. (p1-fg6) equity in climate action was also discussed in relation to marginalized populations, such as those experiencing homelessness. lack of affordable housing, rising food costs, lack of infrastructure in rural areas to support climate-friendly initiatives, and rising job insecurity for the younger generation were all emphasized by participants which brought to the forefront that older adults in this study favored systemic approaches that prioritized addressing social inequities: 6 ihtp, 2(3), si: 1-15, 2022 cc by-nc-nd 4.0 issn 2563-9269 for a lot of the homeless people. we’re not doing a lot, enough for those people. and somehow, we seem to have spent money in strange places. like they had this e-bike rebate. i think it was up to 7000 dollars for people that wanted to buy an e-bike, that they would reimburse them for that so that they would do a – i think some of these things were like 13,000 dollars…if someone can afford 13,000 dollars, they don’t need a rebate for 7000 dollars, when you’ve got homeless people in the city. we seem to be spending money in the wrong areas. (p1-fg4) participants emphasized the need to attend to rural and global inequities in developing climatefriendly policies: i think governments need to really pay attention to more isolated communities, rural communities. there’re things that we have available in the cities. like you can get an electric car…but if you’re in rural alberta, you’re a long way between small towns that may or may not have plug-ins for your car…so that concerns me, that the focus just always seems to be the bigger urban centers… (p7fg7) some participants were immigrants to canada and described the impacts of climate change in countries of origin such as increased occurrences of flooding or droughts. other participants reported watching the news and social media which raised awareness of the global impacts of climate change: what i’m finding is that whilst we’re affected quite dramatically by the climate change, i’m finding that lowand middle-income countries are affected even more, and they are experiencing extreme stressors, that’s something that we need to address immediately…there’s no food in certain parts because of the climate change. the poverty has increased in parts of the world, specifically the low and middle-income countries, and that really worries me. (p8-fg3) across focus groups, participants highlighted the need for more government accountability with regard to climate change while being sensitive to local and global inequities. the need for more transparent communication and trust-building with communities was evident in participants’ conversations due to reports of policy knowledge gaps and skepticism of government-initiated actions. most importantly, the findings highlight older adults’ concerns about climate initiatives that fail to attend to social inequities, including inequities experienced during older age. actions to address climate change participants in this study overwhelmingly agreed on the need for environmental stewardship where individual responsibility was emphasized: “i think there are things that we as individuals can do…so, three years ago, we were going to buy a new car…we bought a prius, a hybrid, so i could cut my gas consumption in half.” (p4-fg7) more questions were raised around the types of individual activities that could be impactful in addressing climate change. many emphasized that small steps can be taken by individuals that can make a difference, while simultaneously questioning the impact of individual action in face of an overwhelming climate crisis on a global scale: if they can communicate how the individual person can help. because right now the individual person feels like there’s nothing they can do. but if they say, ‘this is what you can do to help” …to make them feel like they’re contributing. (p6-fg5) until the big countries who are doing all the mess wake up and make changes, i think not much difference will be made. but any tiny step individuals take can make some difference. (p1-fgd3) participants described the need for more education focused on enhancing community agency: as individuals, we could become better informed, educated about climate change, what is it, what can we do as individuals, and groups…that would give us motivation to do more. (p5-fg6) most participants were interested and motivated to contribute to the movement for climate action but some described ageist attitudes that created barriers to meaningful engagement. older adults in this study evidently wanted to discuss climate change and were aware of many of the social, policy and health 7 ihtp, 2(3), si: 1-15, 2022 cc by-nc-nd 4.0 issn 2563-9269 implications. participants, however, reported a lack of engagement with their demographic and societal attitudes that assumed older adults were not sufficiently interested or committed to climate action: participant 3: yeah. the apathy of the politicians towards the seniors… participant 9: yeah, that’s very true. participant 7: “we’re not going to listen to them.” that’s what you get from the younger kids, “you’re too old. you don’t know what you’re talking about.” participant 6: [laughs] i get the impression that they feel the seniors do absolutely nothing. (fg5) i find that there were a lot of things that were not orientated towards the seniors but orientated towards younger people…the politicians are all going towards the younger people, because they’re the ones that are going to be the voters down the road. they’re also the ones that are consumers. as you get older you consume less. (p5-fg4) participants described life experiences that brought awareness of the changing climate over their lifetime and knowledge about the ways to live a more sustainable lifestyle. while some older adults talked about competing priorities, like their health and financial needs, caring for the environment was still described by the majority as warranting urgent action. participants noted that contrary to prevailing assumptions, older adults like themselves were adept at living in a sustainable and environmentally responsible way. participants, also, emphasized leaving a positive legacy for their children and grandchildren. this was a strong motivator for engaging with climate change issues: listening to other seniors, they are aware of it (climate change) and i’m certain they seem to be concerned…because we’re thinking about our children and grandchildren and great-grandchildren. what kind of legacy is this to leave them? that in itself should be a big motivator for all of us to clean up our act. (p1-fg6) the potential for older adults to be allies in climate initiatives and the rich experiences older adults bring to climate change conversations were evident from participants’ discussions. ageist attitudes, climate literacy knowledge gaps, and lack of concrete guidance for individual action were some of the barriers to action described by this sample of older adults. while there was consensus in the focus groups that not all older adults were actively engaged in climate action, participants emphasized that the many older adults were engaged in their communities, cared about the wellbeing of the environment, and were concerned about climate change. discussion this study provides insights into the climate change perspectives of a sample of older adults living in edmonton, alberta. we discuss two key learnings from older adults’ narratives: (1) the need to tailor climate messaging for older adults and (2) the impacts of ageism on effective climate action. climate messaging and older adults the type of knowledge an individual possesses in combination with their value systems has been shown to predict concern about climate change (shi et al., 2016). in this study, most participants identified local and global impacts of a changing climate on the environment and the wellbeing of their communities, often from their lived experience and from the media. variations were noted in knowledge related to causes of climate change, whether climate change was reversible, impacts on health, and overall sense of concern about climate change. lack of knowledge and awareness of personal risks about the health impacts of climate change was highlighted in other studies on older adults (abrahamson et al., 2009; haq, 2013; valois et al., 2020). distrust, fear, and uncertainty demonstrated via lack of clarity about approaches to climate action and the possibility of effective change shows the importance of understanding the role of emotion in climate messaging (chapman et al., 2017) and the role of trust in enhancing people’s willingness to support climate policies (smith & mayer, 2018). the 8 ihtp, 2(3), si: 1-15, 2022 cc by-nc-nd 4.0 issn 2563-9269 need for more public “climate literacy” has been emphasized to increase support for climate policies (kundzewicz et al., 2020) and was noted in this study, especially as this relates to trust in the commitment to and effectiveness of climate policies. many older adults in this study were uncertain about the individual actions required to create change and the effectiveness of collective action in addressing the climate crisis. behavior change is more likely to occur when individuals feel a sense of control and agency in handling climate-related problems to both minimize the impacts of climate change and maximize their adaptive capacity (valois et al., 2020). creating spaces where older adults can discuss their worries and ways to approach feelings of hopelessness is important as participants in this study displayed strong emotions in their discussions. older adults in this study were concerned about the wellbeing of their communities. positive coping strategies that emphasize both personal agency and community collaboration in tackling climate issues are one avenue highlighted in the literature (ojala et al., 2021; o’neill & nicholson-cole, 2009) and have the potential to enhance climate resilience in this population (rhoades et al., 2019). tackling ageism in climate action it is evident from participants’ discussions that ageism plays a role in the exclusion of older adults from engagement in climate change action and that older adults are both aware of this and engage in counter-narratives such as labeling “seniors as allies” and emphasizing “individual accountability”. this study disrupts the negative discourses that paint older adults as victims of climate change, responsible for the climate crisis and/or apathetic to it. while older adults lag behind younger age groups in their concern about climate change and perceptions of personal accountability for climate change (andor et al., 2018), evidence suggests that attitudes are changing over time towards a stronger belief in climate change and human agency (milfont et al., 2021). older adults identified their capacity for agency and, despite variations in knowledge and attitudes, shared common values around environmental stewardship and intergenerational legacy building. both values can serve as rallying points for this group. the desire to leave a legacy in the form of a better planet and transmit knowledge to the younger generation are strong motivators for older adults to engage in environmental advocacy (chen et al., 2022; miller, 2018; pillemer et al., 2017). addressing inequities is highlighted in older adults’ narratives mirroring current calls by climate justice advocates for justice-oriented policies (markkanen & anger-kraavi, 2019) and intersectional approaches to the syndemic of sexism, ageism, classism, racism and other -isms (kaijser & kronsell, 2014). older adults’ narratives reveal a tension between values for environmental stewardship and everyday needs such as food, housing, and mobility. basic needs in older age to fulfill a “good life” are viewed in comparison to climate policies that might not always incorporate an equity perspective. this points to the need for intentionality in addressing older adults’ concerns for living well in the final decades of life amidst climate, economic, and social turmoil. “how can we include older adults in decision-making in meaningful ways?” is a question that needs to be asked and the solutions actively implemented. addressing the climate emergency must occur simultaneously via building solidarity and agency within older adults’ communities to foster adaptive capacities and resilience (sultana, 2021). older adults have been shown to participate in environmental stewardship and climate advocacy (miller, 2018; pillemer et al., 2017). this study shows that older adults embody a high sense of responsibility for their communities but that engaging them on the topic of climate change will require listening to their concerns and co-creating solutions with them. we argue that building more opportunities for environmental volunteerism (pillemer et al., 2017; pillemer & filiberto, 2017) that includes a focus on climate change and builds skills, knowledge, and capacity for older adults to participate has much potential for enhancing the effectiveness of climate change mitigation and adaptation strategies. study strengths and limitations the findings of this study cannot be generalized due to the small convenience sample, but it provides rich insights into the way one group of older adults 9 ihtp, 2(3), si: 1-15, 2022 cc by-nc-nd 4.0 issn 2563-9269 converse about climate change. older adults’ experiences and perceptions of climate change are not well documented in canada and this study provides a rich case exemplar in an urban setting. the majority of study participants were educated, women, non-racialized and young-old. the perspectives of older adults with varying social locations need to be further incorporated into studies on aging and climate change in recognition of the diverse lived experiences of this demographic and the varying biomes that are affected differentially across the country. conclusion this study provides new insights into the ways older adults discuss climate change, including their knowledge, values, and concerns. it is evident that the perspectives of older adults on climate change are diverse, but that they share a concern for the wellbeing of their communities and future generations and that they have valuable insights of benefit to our collective efforts towards climate action. interventions aimed at engaging older adults in climate change action are needed to decrease the risks for adverse health outcomes in this population and strengthen the equity dimension of climate policies. references abrahamson, v., wolf, j., lorenzoni, i., fenn, b., kovats, s., wilkinson, p., adger, w. n., & raine, r. (2009). perceptions of heatwave risks to health: interview-based study of older people in london and norwich, uk. journal of public health, 31(1), 119-126. https://doi.org/pubmed/fdn102 andor, m. a., schmidt, c. m., & sommer, s. (2018). climate change, population ageing and public spending: evidence on individual preferences. ecological economics, 151, 173–183. https://doiorg/10.1016/j.ecolecon.2018.05.003 ayalon, l., keating, n., pillemer, k., & rabheru, k. (2021). climate change and mental health of older persons: a human rights imperative. american journal of geriatric psychiatry, 29(10), 1038-1040. https://doi.org/10.1016/j.jagp.2021.06.015 benevolenza, m. a., & derigne, l. (2019). the impact of climate change and natural disasters on vulnerable populations: a systematic review of the literature. journal of human behavior in the social environment, 29(2), 266-281. https://doi.org/10.1080/10911359.2018.15 27739 braun, v., & clarke, v. (2006). using thematic analysis in psychology. qualitative research in psychology, 3(2), 77-101. http://doi.org/10.1191/1478088706qp063o a chapman, d. a., lickel, b., & markowitz, e. m. (2017). reassessing emotion in climate change communication. nature climate change, 7(12), 850-852. https://doi.org/10.1038/s41558-017-0021-9 chen, p.-w., chen, l.-k., huang, h.-k., & loh, c.-h. (2022). productive aging by environmental volunteerism: a systematic review. archives of gerontology & geriatrics, 98. https://doi.org/10.1016/j.archger.2021.104 563 city of edmonton. (2018). the climate resilient edmonton: adaptation strategy and action plan. https://www.edmonton.ca/sites/default/fil es/publicfiles/assets/climate_resilient_edmonton.p df?cb=1643406386 city of edmonton. (2010). edmonton seniors: a portrait. https://www.seniorscouncil.net/uploads/fil es/seniors%20portrait.pdf davies, l., leclair, k. l., bagley, p., blunt, h., hinton, l., ryan, s., & ziebland, s. (2020). face-toface compared with online collected accounts of health and illness experiences: a scoping review. qualitative health research, 30(13), 2092-2102. https://doi.org/10.1177%2f1049732320935 835 green, d., billy, j., & tapim, a. (2010). indigenous australians’ knowledge of weather and climate. climatic change, 100(2), 337-354. https://doi.org/10.1007/s10584-010-9803-z https://doi.org/pubmed/fdn102 https://doi-org/10.1016/j.ecolecon.2018.05.003 https://doi-org/10.1016/j.ecolecon.2018.05.003 https://doi.org/10.1016/j.jagp.2021.06.015 https://doi.org/10.1016/j.archger.2021.104563 https://doi.org/10.1016/j.archger.2021.104563 https://www.edmonton.ca/sites/default/files/public-files/assets/climate_resilient_edmonton.pdf?cb=1643406386 https://www.edmonton.ca/sites/default/files/public-files/assets/climate_resilient_edmonton.pdf?cb=1643406386 https://www.edmonton.ca/sites/default/files/public-files/assets/climate_resilient_edmonton.pdf?cb=1643406386 https://www.edmonton.ca/sites/default/files/public-files/assets/climate_resilient_edmonton.pdf?cb=1643406386 https://doi.org/10.1177%2f1049732320935835 https://doi.org/10.1177%2f1049732320935835 10 ihtp, 2(3), si: 1-15, 2022 cc by-nc-nd 4.0 issn 2563-9269 haq, g., snell, c., gutman, g., & brown, d. (2013). global ageing and environmental change. stockholm environment institute, university of york, york. https://mediamanager.sei.org/documents/ publications/sei-projectreport-haqglobalageingandenvironmentalchange2013.pdf inter-governmental panel on climate change [ipcc]. (2018). summary for policymakers. in: global warming of 1.5°c. an ipcc special report on the impacts of global warming of 1.5°c above pre-industrial levels and related global greenhouse gas emission pathways, in the context of strengthening the global response to the threat of climate change, sustainable development, and efforts to eradicate poverty [masson-delmotte, v., p. zhai, h.-o. pörtner, d. roberts, j. skea, p.r. shukla, a. pirani, w. moufouma-okia, c. péan, r. pidcock, s. connors, j.b.r. matthews, y. chen, x. zhou, m.i. gomis, e. lonnoy, t. maycock, m. tignor, and t. waterfield (eds.)]. kaijser, a. & kronsell, a. (2014). climate change through the lens of intersectionality. environmental politics, 23(3), 417-433. https://doi.org/10.1080/09644016.2013.83 5203 kundzewicz, z. w., matczak, p., otto, i. m., otto, p. e. (2020): from 'atmosfear' to climate action. environmental science and policy, 105, 7583. https://doi.org/10.1016/j.envsci.2019.12.01 2 leyva, e. w. a., beaman, a., & davidson, p. m. (2017). health impact of climate change in older people: an integrative review and implications for nursing. journal of nursing scholarship, 49(6), 670-678. https://doi.org/10.1111/jnu.12346 liamputtong, p. (2011). focus group methodology: principles and practice. sage markkanen, s., & anger-kraavi, a. (2019). social impacts of climate change mitigation policies and their implications for inequality. climate policy (earthscan), 19(7), 827–844. https://doi.org/10.1080/14693062.2019.15 96873 miller, e., & brockie, l. (2015). the disaster flood experience: older people's poetic voices of resilience. journal of aging studies, 34, 103112, https://doi.org/https://doi.org/10.1016/j.ja ging.2015.05.003. miller, e. (2018). “my hobby is global warming and peak oil”: sustainability as serious leisure. world leisure journal, 60(3), 209-220. https://www.tandfonline.com/doi/abs/10.1 080/16078055.2018.1496528 moser, s. c. (2016). never too old to care: reaching an untapped cohort of climate action champions. public policy & aging report, 27(1), 33-36. https://doi.org/10.1093/ppar/prw029 morgan, d. l. (1997). focus groups as qualitative research. [electronic resource] (2nd ed.). sage morse, j. m. (2012). qualitative health research: creating a new discipline. left coast press milfont, t. l., zubielevitch, e., milojev, p., & sibley, c. g. (2021). ten-year panel data confirm generation gap but climate beliefs increase at similar rates across ages. nature communications, 12(1). https://doi.org/10.1038/s41467-021-24245y o’neill, s. & nicholson-cole, s. (2009). “fear won’t do it”: promoting positive engagement with climate change through visual and iconic representations. science communication, 30(3), 355-379. https://doi.org/10.1177%2f1075547008329 201 ojala, m., cunsolo, a., ogunbode, c. a., & middleton, j. (2021). anxiety, worry, and grief in a time of environmental and climate crisis: a narrative review. annual review of environment & resources, 46, 35-58. https://doi.org/10.1146/annurev-environ012220-022716 ostapchuk, j., harper, s., willox, a. c., phd, edge, v. l., & rigolet inuit community government. (2015). exploring elders’ and seniors’ perceptions of how climate change is impacting health and well-being in rigolet, nunatsiavut. journal of aboriginal health. https://mediamanager.sei.org/documents/publications/sei-projectreport-haq-globalageingandenvironmentalchange-2013.pdf https://mediamanager.sei.org/documents/publications/sei-projectreport-haq-globalageingandenvironmentalchange-2013.pdf https://mediamanager.sei.org/documents/publications/sei-projectreport-haq-globalageingandenvironmentalchange-2013.pdf https://mediamanager.sei.org/documents/publications/sei-projectreport-haq-globalageingandenvironmentalchange-2013.pdf https://doi.org/10.1080/09644016.2013.835203 https://doi.org/10.1080/09644016.2013.835203 https://publications.pik-potsdam.de/cone/persons/resource/zbyszek https://publications.pik-potsdam.de/cone/persons/resource/ilona.otto https://doi.org/10.1016/j.envsci.2019.12.012 https://doi.org/10.1016/j.envsci.2019.12.012 https://doi.org/10.1111/jnu.12346 https://doi.org/https:/doi.org/10.1016/j.jaging.2015.05.003 https://doi.org/https:/doi.org/10.1016/j.jaging.2015.05.003 https://www.tandfonline.com/doi/abs/10.1080/16078055.2018.1496528 https://www.tandfonline.com/doi/abs/10.1080/16078055.2018.1496528 https://doi.org/10.1146/annurev-environ-012220-022716 https://doi.org/10.1146/annurev-environ-012220-022716 11 ihtp, 2(3), si: 1-15, 2022 cc by-nc-nd 4.0 issn 2563-9269 https://jps.library.utoronto.ca/index.php/ijih /article/view/29095/pdf_9 pillemer, k., tillema-cope, m., & nolte, j. (2021). older people and action on climate change: a powerful but underutilized resource. commissioned report for helpage international. https://www.unescap.org/sites/default/d8fi les/event-documents/kpillemer_paper.pdf pillemer, k., & filiberto, d. (2017). mobilizing older people to address climate change. public policy & aging report, 27(1), 18-21. https://doi.org/10.1093/ppar/prw030 pillemer, k., wells, n. m., meador, r. h., schultz, l., henderson, c. r., cope, m. t. (2017). engaging older adults in environmental volunteerism: the retirees in service to the environment program. gerontologist, 57(2):367-375. https://doi.org/10.1093/geront/gnv693. qsr international pty ltd. (2018). nvivo (version 12). https://www.qsrinternational.com/nvivoqualitative-data-analysis-software/home rhoades, j., gruber, j., & horton, b. (2019). promoting the resilience of older adults through participatory climate change adaptation planning. journal of homeland security & emergency management, 16(3). https://doi.org/10.1515/jhsem-2017-0057 shi, j., visschers, v. h., siegrist, m., & arvai, j. (2016). knowledge as a driver of public perceptions about climate change reassessed. nature climate change, 6(8), 759-762. smith, e. k. & mayer, a. (2018). a social trap for the climate? collective action, trust and climate change risk perception in 35 countries. global environmental change, 49, 140-153. https://doi.org/10.1016/j.gloenvcha.2018.0 2.014 sultana, f. (2021). climate change, covid-19, and the co-production of injustices: a feminist reading of overlapping crises. social & cultural geography, 22(4), 447-460. https://doi.org/10.1080/14649365.2021.19 10994 tilstra, m. h., tiwari, i., niwa, l., campbell, s., nielsen, c. c., jones, c. a., ... & yamamoto, s. s. (2021). risk and resilience: how is the health of older adults and immigrant people living in canada impacted by climate-and air pollution-related exposures? international journal of environmental research and public health, 18(20), 10575. world health organization. (2020). un decade of healthy aging. https://www.who.int/initiatives/decade-ofhealthy-ageing zaval, l., markowitz, e. m., & weber, e. u. (2015). how will i be remembered? conserving the environment for the sake of one’s legacy. psychological science, 26(2), 231-236. https://doi.org/10.1177%2f0956797614561 266 valois, p., talbot, d., bouchard, d., renaud, j.-s., caron, m., canuel, m., & arrambourg, n. (2020). using the theory of planned behavior to identify key beliefs underlying heat adaptation behaviors in elderly populations. population & environment, 41(4), 480–506. https://doi.org/10.1007/s11111-020-003475 https://www.unescap.org/sites/default/d8files/event-documents/kpillemer_paper.pdf https://www.unescap.org/sites/default/d8files/event-documents/kpillemer_paper.pdf https://doi.org/10.1093/ppar/prw030 https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home https://www.qsrinternational.com/nvivo-qualitative-data-analysis-software/home https://doi.org/10.1515/jhsem-2017-0057 https://doi.org/10.1016/j.gloenvcha.2018.02.014 https://doi.org/10.1016/j.gloenvcha.2018.02.014 13 ihtp, 2(3), si: 1-15, 2022 cc by-nc-nd 4.0 issn 2563-9269 table 1. interview guide sample questions 1 what do you know about climate change? 2 do you feel that climate change is important? why or why not? 3 as the years go by have you noticed changes in the weather? the environment around you? what are these changes? how do they impact you? 4 do you feel that your health is at risk due to climate change? 5 how confident are you in your ability to adapt to the possible risks and/or problems posed by climate change? 6 what role does government have in addressing climate change? 7 where do you get your information on climate change? how reliable are these sources of information? 8 what resources, information, and interventions are needed to help older adults adapt to the impacts of climate change? 14 ihtp, 2(3), si: 1-15, 2022 cc by-nc-nd 4.0 issn 2563-9269 table 2. socio-demographic characteristics characteristics n=39 age, years, n (%) 55-65 6(15%) 66-75 17(43%) 76-85 10(26%) 86 and older 3(8%) not reported 3(8%) gender, woman, n (%) 31 (79%) education, n (%) elementary 1(2%) completed high school 14(36%) received post-secondary 21(54%) not reported 3 (8%) immigrant status 5 (13%) years lived in edmonton, n (%) <5 years 2 (5%) 5-10 years 2 (5%) >10 years 35 (90%) 15 ihtp, 2(3), si: 1-15, 2022 cc by-nc-nd 4.0 issn 2563-9269 table 3. thematic analysis findings themes related codes (# references across data) making sense of climate change • differing understandings of climate change (43 references) • perceived impacts of climate change on health (26 references) • negative impacts of climate change on environment (30 references) • lack of access to information about climate change (38 references) lack of leadership in managing climate change • mismanagement or inaction by government (31 references) • balancing needs of older adults and marginalized groups (40 references) actions to address climate change • older adults as allies (10 references) • individual actions matter (29 references) microsoft word copy edit north.docx ihtp, 2(3), si: 16-26, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 16 environmental stewardship in healthcare: use of bio-plastics in surgery special issue: planetary health katie north1 1athabasca university, faculty of health disciplines, athabasca, alberta corresponding author: k. north (vandenbussche.katelyn@gmail.com) abstract the covid-19 pandemic has contributed to a significant increase in the amount of waste generated by the healthcare industry. due to a lack of ecologically conscious options and policies, much of the healthcare industries’ waste ends up in landfills or incinerated, contributing to landmass pollution and methane gas production and the release of toxic chemicals into the air. environmental pollutants have been contributing to worsening climate conditions for decades, and the planet is facing a dire climate emergency in the coming years. surgical departments produce a significant portion of healthcare-generated waste (hcgw) but can positively influence the health sector to pursue ecologically protective adaptations. procedural and product changes to environmentally friendly products, like bio-plastics, can help limit plastic waste produced by surgical departments and reduce overall waste created by the industry. by integrating bio-plastic alternatives into hospital surgical practices, surgery departments can demonstrate how environmental stewardship can be prioritized within the healthcare industry. keywords bio-plastic, community development, health plan implementation, medical waste, surgical products background environmental stewardship in healthcare concern for planetary welfare has been at the forefront of public attention in recent years. there is a consensus in the literature that the ongoing climate crisis is the most significant threat to human welfare, and without intervention, it will have catastrophic implications for life on earth (ahmed, 2020; costello et al., 2009; hensher, 2020; who, 2019). as a result, a notable shift in focus is occurring across various professional landscapes to incorporate aspects of environmental sustainability in business models, corporate values, and services administration (hensher, 2020; sherman et al., 2020). however, the recent onset of the covid-19 pandemic has caused unforeseen challenges and setbacks in implementing ecologically protective practices. it has generated excessive additional waste in the form of disposable personal protective equipment and exacerbated the threat to the environment (patrício silva et al., 2021). moreover, non-recyclable, non-biodegradable products are disproportionately utilized in the health sector, most significantly by hospital surgical departments, which account for 1/3 of hospital waste despite representing a far smaller physical presence in the healthcare system (wyssusek et al., 2019). this literary review will contribute new analyses and recommended solutions to the literature's emerging ecological ihtp, 2(3), si: 16-26, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 17 concepts in the health sector including, the importance of industry accountability and environmental stewardship and sustainable surgical practices in healthcare. furthermore, a discussion will be included regarding the integration of ecologically protective products, such as bio-plastics, into hospital surgical departments and the potential impact of these changes. review of literature global pollution and climate crisis carbon emissions there is undeniable scientific evidence that we are amidst a global environmental emergency for which humans are responsible. the anthropogenic climate emergency is a multifaceted issue caused by various human activities on the planet, ranging from plastic waste production, utilization of fossil fuels and their associated pollution, and deforestation (costello et al., 2009). through decades of research, scientists have discovered the unintended consequences of our actions, including, most notably, the greenhouse gas effect (ghge) from carbon dioxide (co2) emissions (australian national university anu, n.d.; costello et al., 2009). overall, little action was taken to significantly limit or reduce carbon emissions and waste production in these early years of environmental research (anu, n.d.). the ghge is causing a rise in global temperatures far beyond pre-industrial levels and what has been deemed a safe threshold of 2°c (costello et al., 2009; nasa, 2021). international agencies and governments are working to reduce global ghge in the hopes of remaining below a 2°c global temperature increase, which could still have potentially dangerous consequences (buis, 2019; united nations climate change conference, unccc, 2021). drastic changes to rainfall patterns, resulting in intense drought or flooding, are potential consequences of a 2°c global temperature increase (buis, 2019; nasa, 2021). even within the limits of a safe global 2°c temperature rise, oceans and forests will be drastically impacted (buis, 2019). oceans will undergo an increase in acidity, posing a risk to the diversity of marine life, and forests are likely to experience greater loss secondary to fires (buis, 2019). additionally, rising seawater levels could cause up to 70% of all coastlines to rise by approximately 0.7 feet, consequently impacting freshwater drinking supplies and risking displacement of coastal region populous (buis, 2019; nasa, 2021). as temperatures continue to rise, so does the risk-associated severity of environmental consequences. should temperatures rise to 4-5°c, consequences will include the melting of glaciers, a further rise to sea levels, unpredictable and extreme weather patterns, a disrupted natural state, and the eventual extinction of millions of species (costello et al., 2009; hensher, 2020; sherman et al., 2020). the united nations climate change conference, unccc (cop26), is a meeting of more than 200 nations in a unified effort to halt climate change by reducing co2 emissions globally (unccc, 2021). despite goals set by the cop26 group, global emission levels continue to rise and are falling short of the necessary reductions to maintain the planet below the 2°c thresholds. the unccc has recognized that pledged modifications to current carbon emissions from major emitting countries worldwide, will only moderately reduce carbon dioxide pollution, from 50 to 47 gigatons of co2 per year (unccc, 2021). annual worldwide emissions would need to fall below 35 gigatons to effectively limit a global temperature increase to 1.5c (briggs, 2021; unccc, 2021). the worrying trend of a continuous rise in co2 emissions is primarily related aspects of modern life in industrialized nations (chang et al., 2019). the coming decades could be highly volatile for human life if urgent interventions are not prioritized to slow co2 production and planetary warming (costello et al., 2009; hensher, 2020; steffen et al., 2015). a shift in global culture is needed to prioritize the planet's welfare and mitigate the climate crisis on a more significant scale. developing new carbon-neutral technologies for transportation, product development, and manufacturing in industrialized and developing nations is needed to reduce co2 ihtp, 2(3), si: 16-26, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 18 production and halt the global temperature rise effectively and drastically. plastic pollution plastic waste is a severe problem affecting the health of terrestrial animals, marine life, and, subsequently, humans (chatterjee & sharma, 2019). plastic waste accumulation has reached extreme levels due to excessive manufacturing of non-decomposing plastic products and a lack of sufficient recycling methods, facilities, and resources and irresponsible disposal (chatterjee & sharma, 2019). humans’ overconsumption of plastic has resulted in gross waste accumulation in oceans with a plastic collection twice as large as texas now found in the pacific (chatterjee & sharma, 2019; wetzel, 2021). plastics are vulnerable to degradation in ocean waters but are not considered biodegradable, as they do not break down into harmless particles (national geographic, 2019). small plastic pieces, 5mm and less, are categorized as microplastics, either manufactured or secondarily created through environmental breakdown (chatterjee & sharma, 2019; national geographic, 2019). emerging studies examine the extent of microplastic contamination of marine life and ocean waters due to human activity (costello et al., 2009; chatterjee & sharma, 2019). plastic pollutants in ocean waters pose extreme health risks for marine animals and can be fatal when consumed in large quantities or may cause obstruction of fins, flippers, or airways and absorb other contaminants found in ocean water (chatterjee & sharma, 2019). without intensive large-scale interventions, the ongoing climate crisis will have increasingly devastating consequences for humanity and impact those in developing countries the hardest (costello et al., 2009; steffen et al., 2015). moreover, humans will suffer under current practices, and global ecosystems and biodiversity will be severely compromised (buis, 2019). it is no longer viable to continue current practices that further contribute to the climate problem with extreme outcomes. all global industries are implicated in climate emergencies and have an ethical responsibility to adjust and reduce emissions and waste production. relevance to the healthcare industry healthcare has an intricate relationship with climate change due in part to the complexity of the industry. a further scientific examination of this relationship, specific to a region, is needed to develop thorough mitigation strategies to combat the climate crisis. however, two distinct trends appear commonly represented in the literature. firstly, the existing correlation between pollution, climate change, and poorer health outcomes are well documented (ahmed, 2020; hensher, 2020). ghge, plastic, and airborne pollution will worsen natural resource availability in the coming decades without intervention (costello et al., 2009; hensher, 2020; sherman et al., 2020). therefore, public health and well-being will be threatened by climate change as the planet experiences the consequences of mass industrialization, such as carbon emission pollution, plastic waste accumulation, and the excessive consumption and contamination of natural resources. access to fresh water and sufficient food, mass population displacement, mutating viruses and disease patterns, and conflict are factors that will potentially compromise public health (costello et al., 2009). those with poorer socioeconomic status and those living in poorer countries are more at risk for experiencing climate-triggered health problems (costello et al., 2009). presently, 90% of the world’s population is exposed to harmful air pollutants, for which consistent exposure can lead to respiratory illness (who, 2019). populations living in developing countries often bear the burden of industrialized nations’ wastefulness and consumer lifestyles that contribute to far more significant pollution production, carbon emissions and the underlying climate crisis. those living in developing nations are at greater risk for experiencing adverse climatetriggered health impacts than those living in industrialized nations (heshner, 2021). geographical location is considered a significant risk factor for climate-related displacement, lack of access to resources, and an increased population density, which correlates to the associated risk for virus transmission (costello et al., 2009; who, 2019). ihtp, 2(3), si: 16-26, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 19 pollution and poor environmental conditions are the leading cause of non-communicable environmental propagated illnesses worldwide (landrigan et al., 2018). environmental pollution, which is projected to increase over the coming decades, is presently responsible for 16% of deaths worldwide and may account for an additional 250,000 lives lost per year by 2050 (landrigan et al., 2018). public health concerns secondary to the effects of climate change are innumerable, and the fallout may potentially cause enough illness in the human population to overwhelm global healthcare systems. secondly, recent publications examine how the healthcare field is adding to the climate problem through carbon emissions, plastic waste, and air and water contamination (hensher, 2020; lenzen et al., 2020; sherman et al., 2020, wyssusek et al., 2019). developing research has illuminated the reality of the healthcare industry’s wasteful practices. healthcare contributes to the global climate crisis, accounting for 1-5% of total global carbon emissions through the production of plastic waste, elevated energy consumption, and air, soil, and water pollution (ahmed, 2020; lenzen et al., 2020). as anticipated, the highest producing healthcare sectors belong to industrialized countries with high emission rates in other sectors (karliner et al., 2019). the health sectors in industrialized nations inclusive of china, united states, and india generate the most carbon emissions, producing >400 megatons of co2 annually (hensher, 2020). the covid-19 pandemic has substantially affected the amount of waste generated by the healthcare industry and caused delays in developing healthcare-focused environmental protection. the global pandemic has threatened public health and forced nations to prioritize the wellbeing and safety of the human population over sustainable environmental practices (patrício silva et al., 2021). the prioritization of human health over planetary wellness is evident by the increase in single-use plastics in the healthcare sector, such as ppe and individual packaging (patrício silva et al., 2021). for example, single-use disposable medical masks are ten times more damaging to the environment than reusable masks (patrício silva et al., 2021). at the height of the pandemic, medicalgenerated plastic waste increased by as much as 370% beyond the typical annual average in spain and china resulting in inadequate disposal methods due to plastic waste far exceeding these regions’ processing capabilities (patrício silva et al., 2021; klemes, 2020). as the pandemic continues to be present in many parts of the globe, researchers anticipate an overall 17% increase in the production of medical purposed plastics, contradictorily to ecological needs of the planet and goals of the unccc (patrício silva et al., 2021; prata et al., 2020; unccc, 2021). to create ecologically innocuous protocols and zero carbon emissions in the health sector, transparent healthcare accountability in the climate crisis is necessary, and hcgw during the covid-19 pandemic is no exception. significance to surgical discipline surgical departments generate 33% of all hospital waste but occupy only a fraction of the industry’s physical space (wyssusek et al., 2019). at present, surgical department practices are largely non-sustainable and rely on ecologically damaging products to function (wyssusek et al., 2019). there are several reasons why the surgical field accounts for a disproportionately high amount of pollution and waste production within the healthcare system (wyssusek et al., 2019). first, sterilized instruments needed in surgical areas account for many packaging and single-use plastic consumption (wyssusek et al., 2019). second, not all plastic products are recyclable, and recyclability may vary by location depending on regional resources, policies, and waste management capabilities (wyssusek et al., 2019). third, recycling and other ecological waste management processes have higher associated costs than waste disposed directly to landfills, and some organizations are not inclined to spend additional funds for environmental preservation (southorn et al., 2013; wyssusek, 2019). furthermore, foran (as cited in wyssuek, 2019), recognized that workplace culture may be negatively influenced by financial motivation causing tentativeness in surgical employees to ihtp, 2(3), si: 16-26, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 20 properly dispose of recyclable materials due to associated costs and fear of reprimand. negative workplace culture and attitudes towards recycling may cause an excessive number of materials disposed of under hazardous material protocols, which has more significant environmental impacts than standard recycling (southorn et al., 2013; wyssusek, 2019). additionally, mandatory ppe needed during the covid-19 pandemic has generated further waste in surgical areas in the form of gloves, gowns, and masks (patrício silva et al., 2021). moreover, strict hospital guidelines for equipment sterilization and packaging are another factor that contributes to the excessive use of plastic in surgical areas. sterilized equipment must be kept free from contaminants and any possible exposure to elements through effective impenetrability of packaging (cdc, 2016). plastic has long served as an inexpensive option to fulfill these requirements. solution: use of sustainable products bio-plastics the development of sustainable plastic alternatives is underway. many researchers are examining the variations of biodegradable plastics, or bioplastics, as a realistic option to replace the harmful products currently in circulation. the term biodegradable applies to products with varying characteristics depending on location and existing legislation. generally, biodegradable signifies that environmental microorganisms will help the product decompose naturally (bano et al., 2018). for example, the united kingdom requires that any product labelled as biodegradable plastic must completely dissolve in an industrial landfill within two years (carlson, 2020). various bio-plastic formulas exist and could replace traditional plastic (bano et al., 2018). for example, plant cellulose, and polylactic acid have been developed as alternative biodegradable plastics, with a lower carbon footprint than traditional polymer plastics (bano et al., 2018). polyethylene glycol is an additive which can alter certain properties found in bio-plastic such as rigidity (bano et al., 2018). additionally, new bio-plastics are under development by repurposing waste, which furthers ecological advancement and benefits the planet (folino, 2020). researchers have begun to examine the applicability of bio-plastics in the medical field and to what extent these biodegradable formulas can replace current products. many of the current known bio-plastic options have desirable physical characteristics like bio-absorbability, structural density, and dynamic modulus that make bioplastics feasible for use in the medical field (bano et al., 2018). bio-plastics can replace current plastic packaging in surgical areas as they could offer similar impermeable and protective qualities for sterile and single-use items (allen, 2018). engineered bio-plastics that dissolve in industrial landfills may be the most suitable for the health sector. they would require very little change to existing procedures or waste management resources. bio-plastic that can decompose in an industrial landfill may be disposed of with regular refuse and will not have the ecologically damaging effects of petrochemicals found in traditional plastics (folino, 2020). informative, educational campaigns for staff to understand the objectives of using bio-plastics and the proper way to dispose of these items would be beneficial in creating a workplace culture focused on environmental protection. options for replacing products in surgical areas include sterile equipment packaging and drapes, wrappers for single-use items like suction, ppe packaging, garbage bags, cups, cutlery, and other daily use products for inpatients. while concern over the economic impact of transitioning to ecologically protective products and policies may cause hesitancy and lack of action in the health sector, some hospital facilities have found alternative methods to offset costs associated with these changes (allen, 2018; wyssuek, 2019). for example, alternatives to standard municipal waste exist, and some health facilities have adopted bio-plastics that require compost treatment for proper decomposition. onsite composting would require facilities to create an anaerobic waste processing area where all organic materials, including bio-plastics, can be ihtp, 2(3), si: 16-26, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 21 decomposed without exposure to oxygen (allen, 2018). several hospitals in the netherlands have created similar facilities and process all their facilities hcgw using this anaerobic compost system (allen, 2018). decomposition of bio-plastics and other organic waste materials creates biogas consisting primarily of methane, which has been used as supplementary power generation in dutch hospitals, effectively capitalizing on economic opportunities from these environmentally protective adaptations (allen, 2018). with opportunity for further revenue streams, initial investments in ecologically protective changes may be more feasible for many organizations. implementation no single model or framework in the literature perfectly fits the implementation process for transitioning healthcare facilities to environmentally protective products and policies. further development of a more comprehensive framework encompassing various aspects of program changes, implementation planning, community development, and economic considerations is needed to help guide industry professionals through environmentally protective changes. the development of an environmental task force is a recurring theme in the literature, recognized as a starting point for meaningful change towards ecologically beneficial practices (ahmed, 2020; saber, 2020). saber's model describes how nurses can encourage environmental stewardship in the health sector through a three-step process, including creating a task force, reducing biohazardous waste, and municipal solid waste reduction (2020). critical aspects of saber's model are facility-wide education, promotional campaigns, and reassessment approaches for ppe (2020). building upon saber's model, the following recommendations incorporate community development theory, and participative leadership approaches to effect bio-plastic product changes within surgical areas. this recommendation uses the core concepts of community development, focusing on unity and a collaborative effort to achieve meaningful change (brown & hannis, 2012; minkler, 1990). additionally, participative leadership theory, which allows all team members to express opinions and contribute to projects, has been recognized as a well-received and successful leadership style within the health sector (al-sawai, 2013). through professional multidisciplinary collaboration and the prioritization of stakeholder involvement, task forces may ensure the long-term success of this change initiative through sustained community interest (brown & hannis, 2012; chaskin, 1999; minkler, 1990). recommendation phase one: establish an environmental task force a task force group should represent the population that is impacted by the development changes, including a professional multidisciplinary team of organizational management, front line workers, surgical department employees from various professions, and community stakeholders, such as patients or the public (brown & hannis, 2012; chaskin, 1999; minkler, 1990; saber, 2020). tasks using participatory data collection methods to accurately reflect the organization's perceptions, needs, and challenges and those of the invested stakeholders, the task force would complete the following responsibilities (brown & hannis, 2012; saber, 2020). • assess stakeholder perception of the recycling needs of the organization's surgical department. assessment may be completed through targeted interviews, surveys, and group discussions. • examine total waste production and plastic consumption per quarter, focusing on inpatient and short-stay surgical areas (saber, 2020). • discuss potential barriers to change and examine the organizational culture towards recycling, environmental protection, and hcgw using employee engagement meetings, interviews, or surveys. this information is valuable to counter ihtp, 2(3), si: 16-26, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 22 resistance and develop a tailored change effort that reflects the culture and values of the organization or responds to a lack of knowledge amongst team members. • examine disposal processes and waste management agency contracts in place for all surgical department areas. this includes all general waste processed by municipal disposal collection, sharps and biohazard material for incineration, medication disposal, and recycling of workplace products (saber, 2020). • nominate a secondary team responsible for the economic evaluation of the surgical department's current products and disposal processes (saber, 2020). an organizational accountant, economist, or other financial experts may complete this in conjunction with other task force members. • compare initial stakeholder perceptions of the surgical departments recycling needs to the assessments of actual product usage and cost analysis. this comparative analysis will clarify the differences between public perception and the reality of the organization's waste management needs. the information obtained in this step can be synthesized for presentation to stakeholders in phase two. • examine realistic options for changes to surgical products, suppliers, and disposal methods, such as onsite anaerobic composting, change to biodegradable products while maintaining municipal disposal methods, or collaborate with local waste management agencies offsite composting. • determine which products used in the surgical department can be exchanged for bioplastics. increase the use of reusable items that may be sterilized and protected with a bio-plastic barrier (saber, 2020). • connect with bio-plastic suppliers and organize departmental product transition based on budgetary and timeline goals established by the task force. • coordinate a transition of waste management systems to enhance organizational recycling, municipal waste or composting to match change initiative objectives. phase two: presentation of findings create detailed information campaigns to improve awareness and generate support for the initiative (saber, 2020). using the data collected from participative data collection methods informs all identified stakeholders of the organization's ecologically protective policy adaptations (brown & hannis, 2012). create additional targeted information campaigns within surgical department areas to inform staff of current products and policies, upcoming changes, and the benefits these changes will offer the environment and the organization. address areas of concern, barriers to change, or lack of knowledge as identified through data analysis to optimize efficacy of the information campaign. phase three: initiate product exchange • following the task force's product and waste management transition process, implement changes to all identified products and disposal methods within surgical departments. • complete longitudinal studies examine the impact of these products and policy changes. • continue to inform all stakeholders of the progress made throughout the change initiative as frequent follow-ups with impacted community members, including surgical staff, can contribute to better long-term outcomes and easier transition processes (rosenheck, 2001). • quarterly revisions of organizational needs, product usage, waste production, and associated costs should be conducted to generate an overview of all change initiative costs. phase four: correction or expansion task force groups should meet quarterly to discuss successes and failures of the change initiative process. the implementation plan may be revised to address weakness. alternatively, ihtp, 2(3), si: 16-26, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 23 when successful, the project may expand to other departments or incorporate further ecologically protective products or methods into the existing program. all evaluation results and data should be shared with stakeholders to retain public interest and ensure the longevity of the project (rosenheck, 2001). challenges environmental studies concerning healthcare have made significant progress; however, specific limitations exist within the literature. authors and healthcare experts are just beginning to acknowledge the contributory role of healthcare to the climate crisis prompting generalized studies linking these fields. research studies on hcgw remain broadly defined, focusing on emission totals per continent, country, or capita and occasionally reviewing individual departmental contributions. research studies with more targeted objectives to assess hcgw and local waste management resources are needed to determine to what extent the health sector's waste production is being mitigated by local agencies, governments, and regional health authorities. specific departmental studies within the health sector, such as a surgical department waste assessment, can help individual organizations recognize their waste production and reduce outputs effectively. these statistics are instrumental in acknowledging the health industry's role in climate change and waste production and illuminate the shortcomings of existing policies and environmental protective plans unique to the health sector. furthermore, while some studies have begun to evaluate the economic impact of incorporating ecological policies and practices into healthcare industries, specific reviews regarding departmental changes and ecological product integration remain poorly represented in the literature. completing a thorough cost analysis of new ecological product integration by the hospital department, including product cost, shipping, stocking, or sterilization fees, and required disposal processing costs, should be completed in various countries. this assessment would provide a realistic overview of all associated costs for changing to ecologically adapted products within a department, such as switching to bio-plastics within surgery across multiple nations. economic projections for short-term investment requirements will allow organizations to anticipate financial needs to make changes and budget accordingly during the implementation planning phase of this paper’s proposed model. long-term economic assessment will be helpful to demonstrate how changes may impact, positively or negatively, healthcare spending per department following ecological protective changes. moreover, special consideration for alternatively continuing current practices has been partially elaborated in future environmental projections with similar or elevated global emission rates. developing healthcare-specific projections will help incite meaningful change within the moreover, few studies have examined in-depth why healthcare agencies have not willingly begun to make progressive changes to more ecologically sustainable practices. therefore, qualitative studies surrounding healthcare workers' resistance to ecological adaptations should be prioritized. understanding the underlying factors contributing to the health sector's reluctance or idleness on this topic is essential for the future integration of environmentally protective policies and products within the health sector. industry and specific departmental culture may play a pivotal role in accepting and overall sustainability of environmental policy change within the healthcare field. further social studies examining this aspect and change resistance are needed to effectively prepare organizations for transitional processes. conclusion anthropogenic climate change is an urgent threat to human life and planetary wellbeing (ahmed, 2020; costello et al., 2009; hensher, 2020). left unmitigated, the effects of global warming and climate instability will present insurmountable challenges for the healthcare industry. media coverage during the covid-19 pandemic has illuminated how global healthcare has substantially contributed to climate change and pollution. as the health sector acknowledges its involvement in the climate emergency, healthcare ihtp, 2(3), si: 16-26, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 24 leaders must prioritize policies to limit further environmental damage (sherman et al., 2020). presently, many surgical departments rely on single-use products that favor monetary savings rather than sustainability. additionally, health organizations' mislabeling of non-hazardous materials, excessive incineration of surgical refuse, a lack of local recycling methods, and underdeveloped implementation plans continue to contribute to surgical-generated pollution (wyssusek et al., 2019). a participative leadership approach, known to be successful within the industry, and innovative implementation plans to incite changes in policy, procedure, and supplies within surgical departments are methods to reduce healthcare-generated waste and pollution. although surgical field practices alone are not enough to decrease planetary pollution or carbon emissions sufficiently, these modifications may influence healthcare culture towards creating a more sustainable industry. in addition, the public recognizes the health sector as reliable, intelligent, and a prominent figure in community development through which a plan of sustainability could be promoted (costello et al., 2013; sherman et al., 2020). overall, a more environmentally conscious surgical field can contribute to a positive public perception of ecologically sustainable practices and inspire a global movement towards environmental stewardship in all industries. references ahmed, b. (2020). call to action health care in the face of the climate crisis. circulation, 141, 1041-1042. al-sawai, a. (2013). leadership of healthcare professionals: where do we stand? oman medical journal, 28 (4), 285-287. allen, m. (2018, march 27). simplifying hospital waste with bio-based disposables. european research media center. https://www.youris.com/bioeconomy/biote chnology/simplifying-hospital-waste-withbio-based-disposables.kl australian national university. (n.d.). how we discovered the climate problem. anu college of science. https://science.anu.edu.au/newsevents/news/how-we-discovered-climateproblem bano, k., pandey, r., fatima, j., & roohi. (2018). new advancements of bioplastics in medical applications. international journal of pharmaceutical sciences and research, 1, 402-416. doi: 10.13040/ijpsr.09758232.9(2).402-16 briggs, h. (2021, october 25). why is the paris climate agreement important for cop26? bbc news. https://www.bbc.com/news/scienceenvironment-35073297 brown, j., & hannis, d. (2012). community development in canada (2nd ed.). toronto: pearson canada. buis, a. (2019, june). a degree of concern why global temperatures matter. global climate change vital signs of the planet. https://climate.nasa.gov/news/2865/adegree-of-concern-why-globaltemperatures-matter/ carlson, (2020, october 5). uk to get first ever standard for biodegradable plastic following confusion over terminology. dezeen online. https://www.dezeen.com/2020/10/05/bsistandard-biodegradable-plastic-pas-9017/ center for disease control. (2016, september 18). sterilization techniques, guideline for disinfection and sterilization in healthcare facilities. infection control. https://www.cdc.gov/infectioncontrol/guide lines/disinfection/sterilization/sterilizingpractices.html chang, a.y., cowling, k., micah, a.e., et al., 2019. past, present, and future of global health financing: a review of development assistance, government, out-of-pocket, and other private spending on health for 195 countries, 1995–2050. the lancet. chaskin, r. j. (1999). defining community capacity: a framework and implications from a comprehensive community initiative. the chapin hall center for children at the university of chicago. chicago, illinois. costello, a., abbas, m., allen, a., ball, s., bell, s., bellamy, r., friel, s., groce, n., johnson, a., kett, m., levy, c., maslin, m., mccoy, ihtp, 2(3), si: 16-26, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 25 d., mcguire, b., montgomery, h., napier, d., pagel, c., patel, j., patterson, c., puppim de oliveira, j. a., … wolff, j. (2009). managing the health effects of climate change: lancet and university college london institute for global health commission. the lancet, 373, 1693–1733. folino, a., karageorgiou, a., calabrò, p. s., & komilis, d. (2020). biodegradation of wasted bioplastics in natural and industrial environments: a review. journal of sustainability, 12(6030), 1-37. hensher, m. (2020). incorporating environmental impacts into the economic evaluation of healthcare systems: perspectives from ecological economics. the journal of resources, conservation, & recycling, 154, 1-12. https://doi.org/10.1016/j.resconrec.2019.10 4623 karliner, j., slotterback, s., boyd, r., ashby, b., & steele, k. (2019). healthcare’s climate footprint. health care without harm climate-smart health care series green paper number one. arup group, 1-40. klemes j. j., fan, y. v., tan, r. r., & jiang, p. (2020). minimizing the present and future plastic waste, energy and environmental footprints related to covid-19. renewable and sustainable energy reviews, 127, 109883. https://doi.org/10.1016/j.rser.2020.109883. landrigan, p.j., fuller, r., acosta, n.r., adeyi, o., arnold, r., basu, n.n., baldé, a.b., bertollini, r., bose-o’reilly, s., boufford, j.i, breysse, p n., chiles, t., mahidol, c., coll-seck, a. m., cropper, l. m., fuster, v., greenstone, m., haines, a., … zhong, m. (2018). the lancet commission on pollution and health. the lancet. 391, 462– 512. lenzen, m., malik, a., li, m., fry, j., weisz, h., pichler, p., chaves, l. s. m., capon, a., & pencheon, d. (2020). the environmental footprint of health care: a global assessment. the lancet online, 4, 272-279. www.thelancet.com/planetary-health. minkler, m. (1990). improving health through community organization. health behaviour and health education: theory and research and practice. san francisco, ca: jossey-bass publishers. isbn: 978-1118-62898-0 nasa. (2021, october 26). the effects of climate change. global climate change vital signs of the planet. https://climate.nasa.gov/effects/ national geographic. (2019). microplastics. resource library encyclopedia entry online. https://www.nationalgeographic.org/encycl opedia/microplastics/ patrício silva, a. l., prata, j. c., walker, t. r., duarte, a. c., ouyang, w., barcelò, d., & rocha-santos, t. (2021). increased plastic pollution due to covid-19 pandemic: challenges and recommendations. chemical engineering journal, 405, 126683. https://doi.org/10.1016/j.cej.2020.126683 prata, j. c., silva, a., walker, t., r., duarte, a. c., & rocha-santos, t.a.p. (2020). covid-19 pandemic repercussions on the use and management of plastics. environmental science and technology, 54, 1–6. https://doi.org/10.1021/acs.est.0c02178. 
 rosenheck, r. (2001). stages in the implementation of innovative clinical programs in complex organizations. journal of nervous and mental disease, 189(12), 812-821. saber, d. a. (2020). healthcare’s role in environmental sustainability. american nurse journal, 15(10), 50-53. sherman, j. d., thiel, c., macneil, a., eckleman, m., dubrow, r., hopf, h., lagasse, r., bialowitz, j., bilec, m., costello, a., forbes, m., stancliffe, r., anastas, p., anderko, l., baratz, m., barna, s., bhatnagar, u., burnham, j., cai, y., cassels-brown, a., … zimmerman, j. (2020). the green print: advancement of environmental sustainability in healthcare. resources, conservation, & recycling, 161, 2-11. https://doi.org/10.1016/j.resconrec.2020.10 4882 steffen, w., richardson, k., rockstrom, j., cornell, s. e., fetzer, i., bennett, e. m., biggs, r., carpenter, s. r., wim de vries, c. a., folke, c., gerten, d., heinke, j., mace, g. m., persson, l. m., ramanathan, v., reyers, b., ihtp, 2(3), si: 16-26, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 26 & sorlin, s. (2015). sustainability, planetary boundaries: guiding human development on a changing planet. science magazine, 347(6223), 12598550-1125985510. doi: 10.1126/science.1259855 southorn, t., norrish, a.r., & gardner, k. (2013). reducing the carbon footprint of the operating theatre: a multicentre quality improvement report. journal of perioperative practice, 23, 144–146. united nations climate change conference. (2021). uniting the world to tackle climate change. glasgow cop-26, in partnership with italy. https://ukcop26.org wetzel, c. (2021, october 19). this new installation pulled 20,000 pounds of plastic from the great pacific garbage patch. smithsonian magazine. https://www.smithsonianmag.com/smartnews/this-new-installation-just-pulled20000-pounds-of-plastic-from-the-greatpacific-garbage-patch-180978895/ who. (2019). ten threats to global health in 2019. air pollution and climate change. https://www.who.int/newsroom/spotlight/ten-threats-to-global-healthin-2019 wyssusek, k. h., keys, m. t., & van zundert, a. a. j. (2019). operating room greening initiatives – the old, the new, and the way forward: a narrative review. waste management & research, 37(1), 3– 19. https://doi.org/10.1177/0734242x1879 3937 microsoft word copy edit costa.docx ihtp, 2(2), 217-222, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 217 are nurses being heard? the power of freirean dialogue to transform the nursing profession idevania g. costa1 1school of nursing and faculty of health science, lakehead university, thunder bay, on, canada corresponding author: i. g. costa (igcosta@lakeheadu.ca) abstract nurses need to acquire knowledge about interactive communication, apply critical thinking in prevention and management of illness, and act as patient advocates especially among marginalized and vulnerable populations. this three-pronged approach usually begin during their student years and should include a dialogue framework for use during nursing encounters with patients, family members, and other healthcare providers and for improving the safety and effectiveness of patient care. therefore, the nursing curriculum should not only include topics related to illness prevention and management, but also prepare nurses to identify and advocate for social justice and health equality by creating a lively and interactive learning environment to allow nurses to build their self-confidence to act and become change agents. certainly, the covid-19 pandemic, which exacerbated a nursing shortage and led to limited access to services and poor quality of care for all, underscores the urgency of the freirean dialogic approach of action-reflection-action. using this approach, all stakeholders collaborate, discuss, and implement solutions, grow together, and become change agents toward improving nursing care for all. keywords action-oriented; freirean dialogic approach; nursing practice; patient advocates; reflection background as a clinical nurse for over twenty-five years, i have witnessed the power of dialogue to transform day to day practice and build strong team collaboration. as a nursing professor for over two decades, i attest that dialogue is at the heart of the teaching and learning process as freire described in the 1970s. i argue that when nursing professors and students engage in mutual dialogue during learning activities a real interaction and class engagement takes place. as students become protagonists of their learning, professors become facilitators and thereby hold open space for further dialogue, interaction, and reflection. professors and students share experiences as they learn from each other and grow together as human beings to advocate for social justice and health equality for all. through the nursing profession they become empowered change agents. this paper aims to present an overview of paulo freire’s theory of dialogue and “problem-posing education” as well as their application to nursing profession and highlight some potential benefits and contributions to clinical practice and education. i also argue that interacting and sharing constitutes the foundation of the learning process in which professors and students make learning meaningful to both and beneficial to societal improvement; and that dialogue is the vehicle through which such improvement takes place. furthermore, dialogue at the heart of the learning process may help nurses to be open to ideas and different point of views to understand the struggles ihtp, 2(2), 217-222, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 218 that vulnerable populations face when navigating their social lives and health care systems. freire’s methodology of education paulo freire (1921–1997) was a brazilian educator, well known for his emancipatory method of humanizing education for adults. he advocated liberating education and creative learning rather than imposing ready-made knowledge. in his work freire emphasized the process of learning as a social and political activity (okigbo, 1996). nurses interacting with patients, families, and institutions in social and political settings must commit to a process of learning to listen that encourages and implements critical reflection. such reflection can result in recognizing forms of oppression and social injustice and opens minds to understand the struggles of others’ life journeys (giroux, 1995). scholars from different disciplines agree that freire was one of the most influential educational theorists of the twentieth century (durakoglu, 2013; freire & vittoria, 2007; roberts, 1998; smith, 2002), as well an advocate of addressing the many ways oppression takes place in our society and affects vulnerable populations. freire’s ideology for adult education transcends the narrow, mechanical strategy of rote learning: read, recite, write, repeat. in that strategy, objectifying the student also objectifies the teacher (or professor) and the subject becomes an afterthought. the reality that the professor imparts is motionless, lifeless, static, and predictable (freire, 2002). in this methodology, words lose their power and meaning, transforming teaching into a mechanical act for the delivery of information direct to the brain of students. freire labels this phenomenon as the “banking of education” in which professors deposit knowledge and the students receive, memorize, and repeat. this kind of education diminishes students’ creativity, self-confidence, and empowerment to become change agents in society. it is not the situation that oppresses them, but rather it is the banking of education model identified and described by freire that makes the oppressed consciousness passive subjects, and thus speechless and incapable of transforming society. freire proposes an alternative method he named “problem-posing education.” in this model, guided mutual dialogue creates and sustains a lively and interactive learning environment that allows student growth. for freire, dialogue is an encounter between people to transform the reality of where they live, work, study, or interact — and by extension their own society. freire’s critical pedagogy/education focuses entirely on the liberation of the individual from oppressive forces of society by addressing questions such as what, where, and why we read, write, and speak the way we do. it means not just to teach for the sake of teaching but to use reading, writing, and speaking to continuously increase our understanding of the world around us (okigbo, 1996) and transform it as a better place for all. for freire, what takes place in the banking model is not education, but domestication guided by oppression (freire, 2002). applying freire’s methodology to the nursing profession dialogue is not a debate but a conversation that encourages nurses to come together to reflect on their reality and discuss actions toward issues with which they do not conform. freire calls this “conversation praxis”, which means reflectionaction-reflection toward changing a perceived reality (freire, 1970). when nurses come together in a dialogical encounter, they bring different perspectives and viewpoints about a situation, an encounter that encourages them to uncover different issues in the nursing profession and act. there are many reasons why reflection-actionreflection driven by dialogue is applicable to the nursing profession: 1) dialogue is the foundation of human interaction and essential in the process of nursing communication; 2) dialogue helps nurses to come together and use their advocacy skills to improve healthcare and quality of life for those with the greatest need; and 3) dialogue empowers nurses to act toward transforming their practice and society. the following sections demonstrate how the freirean approach applies to nursing practice and education. dialogue as a foundation of human interaction ihtp, 2(2), 217-222, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 219 interacting and sharing constitute the core of the learning experience for both professors and students; and dialogue is the vehicle through which this takes place. dialogue is an essential part of the process of communication and helps to build a good and respectful relationship among individuals who live in a world with wide social diversity. for freire, dialogue is a human phenomenon anchored in the essence of the word. therefore, it is important to find the words to guide the dialogue and make it happen as a constitutive element compounded basically by the action-reflectionaction occasioned by the words or themes used during the dialogue (freire, 1970). it is only by interaction and reflection that human beings can take control of their situation, and create, with some guidance and encouragement, ways to implement actions to transform their reality; through this process they become change agents. in addition, the purpose of dialogue is to critically investigate a specific object, situation, problem, or theme with a view to explain, clarify and understand the object and “naming the world” (freire, 1970). freire defines “naming the world” as a process in which dialogue, between human beings, creates a shared sense of what the world and place they are immerse in is (tufte & mefalopulos, 2009). this process of learning and discovering helps people to find a sense of hope and dignity, which leads to the conclusion that what is unnamed is invisible. freire also asserts that every human being in the world, whether perceived as ignorant or submerged in the “culture of silence,” can look critically at the world in a dialogical encounter with others. dialogue leads to human interaction in which participants wake up to themselves and one another to reflect and act in a movement of transformation. freire’s approach can be used in the nursing curriculum to prepare nurses to appreciate what they already know and take control of their own body of knowledge to create changes and transform the reality they are not conformed with. as i have reflected on freire’s writing and engage my critical thinking and nursing experience, i have become fascinated about the power of dialogue. i perceive it as a vehicle to sustain the critical thinking of nurses in their role as communicators and advocates for social justice and health equality. this thinking does not separate itself from action in which reality is a process of becoming rather than a predetermined state of being. critical thinking requires a rigorous analysis of existing and oppressive reality and how it may be transformed to a better one. nurses should be prepared to practice dialogue to demonstrate critical thinking and reasoning during their interaction with all stakeholders with the purpose of uncovering, addressing, and advocating for a better workplace and quality of care and life for those who need it the most. in exploring freire, roberts (1998) asserts that dialogue provides educators and coordinators a means to enter the learners’ world as well as to allow learners to enter the educators’ and coordinators’ world. finally, freire wants us to be aware of the importance of dialogue to human interaction and society and its importance for naming the world. in vittoria’s 2007 interview with paulo freire’s wife, ana maria araujo freire, freire’s spouse explained that as an educator with a wide vision of the world, freire sincerely believed that people need to communicate and interact with others with respect and openness to diversity, cultural sensitivity, and a culture of humility. the power of dialogue is again highlighted to help people to come together to address oppression in different communities. dialogue as a tool for nurse empowerment the dialogic practice of reflection-actionreflection helps nurses to learn from, interact with, and collaborate with each other; thereby become change agents and more finely attuned social beings. freire (1970) states that without an openness to others’ ideas and points of view and an attitude of humility, faith, and hope in the words we communicate, dialogue can neither exist nor help people to grow together. to illustrate the importance of humility in a dialogical way and use it to change the mindset toward social justice, freire invites each of us individually to reflect on some questions: how can i advocate for social justice and use a powerful dialogue if i am conformed to prevailing social reality and position myself as a privileged member ihtp, 2(2), 217-222, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 220 of it? in other words, if i cannot recognize others’ struggles to access services and resources and their reality of oppression? how can i dialogue and advocate for transformation if i do not recognize the need for changes in society or workplaces? how can i engage in dialogue to transform society if i am closed to — and even offended by — the opinion and points of view of others? how can i dialogue if i am afraid of the possibility of showing my opinion for social justice and challenge the status quo of oppression? for freire, selfsufficiency or a mindset of complacent satisfaction is incompatible with dialogue (freire, 1970) and would prevent changes and human growth toward a better society. as a nursing communicator and advocate for social justice and health equality, i agree that faith and hope are also important components of dialogue. the reason for that is because they work as a motivation or fuel that moves us in the direction of our beliefs, empowering us to “speak up” and act towards changing the reality around us. in fact, freire perceived that the faith allows men and women to believe in their power to change and transform the world, which can also be applied to nursing practice to encourage nurses to believe in their power as change agents in the workplace and society. by coming together nurses can create and re-create a new reality where patients, families, and healthcare providers interact with each other not as static subjects but with dynamism guided by action-reflection-action and critical thinking. freire emphasized the need to maintain our hope as an essential component to move us to pursue and advocate for a new future reality. yet, he stressed that it can be carried out only in interaction with others in society (freire, 1970). in summary, when nurses come together and engage in reflection about a reality that needs to be changed, they become empowered to transform their practice and society. how dialogue empowers nurses to transform their practice and society according to freire (1970), while dialogue can empower and lead to transformation, hopelessness perpetuates the culture of silence that makes human beings cross their arms and wait for the world to transform by itself. freire’s question: how can the world be transformed without the efforts of the dialoguers? i have added two more questions: how can i change the world if i do not want to leave my comfort zone? how can i leave my comfort zone if i do not believe in my power to transform the world? faith leads to motivation and motivation leads to actions and transformation. if nurses want to be heard, they must use their knowledge and the power of dialogue to interact effectively and conscientiously with society and the world. powerful dialogue becomes a means to transform the world and the reality inside it (freire, 1970). in my own experience, i have witnessed the benefit of the power of dialogue used as a fuel to transform nursing practice and implement desired changes in the nursing profession. historically, nurses have been immersed in the culture of silence and afraid of using their vast knowledge and the power of dialogue to clearly state their own needs as professionals and advocates. nurses must speak up about their needs as professionals for better working conditions and respect for their years of education as well as their comprehensive and expanding knowledge. there is an urgent need for preparing nurses to engage in political roles and use their body of knowledge and power of dialogue to advocate for improvements in workplace, salary, and the number of nurses to provide quality patient care. nursing bodies and associations must come together and use the power of dialogue to advocate for policies that prevent nursing burnout due to staff shortages that damage their mental health, afflictions that have been widely witnessed during the covid-19 pandemic (arnetz et al, 2020; galanis, et al., 2021). freire implies that human beings were born not to be silent, or prevented from using their knowledge, critical thinking, and self-reflecting on their own struggles and those of others. when words are used just to communicate a message without allowing those receiving the message to reflect on them and express their point of view, human beings become passive subjects in society and find themselves incapable of transforming their reality. because it is important to connect and share ideas and to consider the experience and knowledge of others sharing the same space, “dialogue is an existential necessity” (freire, 1970, p. 88). ihtp, 2(2), 217-222, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 221 nurses have always been recognized as important professionals among the healthcare team; and during covid-19, nurses were deemed essential workers across the globe. however, a shortage of nurses before the current pandemic was intensified even more during covid-19’s outbreaks and quarantine (international council of nurses, 2021a, 2021b). nurses have a history of working during crises and of overcoming barriers. however, nurses’ concerns and signs of stress and burnout are not always taken into consideration (galanis, et al., 2021). it is time to break the silence and advocate for changes in the workplace. conforming to what we receive: an extensive scope of practice, fewer hours of rest, and low salaries incompatible with extensive years of education and experience do not speak to the recognition we have received as “heroes” and essential workers during the pandemic. we deserve more and should continue advocating for more! it is time for nurses to speak up and be heard! implications while some readers may view the application of freire’s methodology and his dialogic approach as idealistic, others may view it as ambitious and impractical. still others may view it as lacking a research foundation. the foundation of dialogue is reason, respect, and the exchange of ideas and reflections that will lead to action — not domination, control, or competition (levin, meyer & ellis, 2007). a dialogue among nurses who come together to advocate for addressing nursing shortages and improving the safety and effectiveness of patient care “is no more reasonable than florence nightingale sharing her observations with british surgeons that wounds were not causing death, but lack of food, hygiene, and warmth” (levin, meyer & ellis, 2007, p. 81). freire’s methodology of dialogue can be used as an action-oriented framework that builds upon different viewpoints and perspectives and encourages true collaboration among change agents on the healthcare team. for example, lavin and colleagues proposed some assumptions that seem to be well aligned to freire’s methodology and applicable to the nursing profession: 1) even some opposing views contribute depth to dialogue; 2) dialogue will open nurses’ minds and encourage understanding of different perspectives; 3) dialogue is not a rigid process but rather fluent and dynamic; 4) dialogue leads to action; and 5) preconceptions or injudicious judgment affects the insights attained by an open mind and undermines the outcomes of dialogue. freirean dialogue should be integrated into the nursing profession for many reasons. at the heart of nursing education, dialogue helps nurses to learn and reflect on the many reasons why people with less status feel hopeless and powerless to change their reality, and instead conform to it rather than protest to improve the health care system to provide better access for all individuals in society. after travelling to multiple countries and understanding different realities, freire concluded, “there is a third world in the first world and there is a first world in the third world” (freire & vittoria, 2007, p. 100). as an advocacy tool, dialogue helps nurses in their many spheres of work to break up the silence that perpetuates social injustice and conformity with ineffective healthcare models. in health education dialogue is a crucial tool that helps to create and re-create a new social reality where people stuck on lower rungs of society can have their voices heard and needs addressed. nurses across the globe must use dialogue as an instrument to uncover the impact of the nursing shortage on the delivery of quality of care. ultimately, dialogue is a powerful tool that should be used to highlight social and cultural diversity, needs and concerns, social injustice, and health inequality across countries, regardless of nurses and patients being considered part of the first world or the third world! conclusion in conclusion, freirean dialogue can be used in the nursing profession to interact, discuss, relate, advocate, and take action to advance nursing education and practice. guided by love, hope, faith, and humility to address each other’s ideas and beliefs of reality, nurses can respectfully consider each point of view, knowledge, and experience to transform their profession and society. ihtp, 2(2), 217-222, 2022 cc by-nc-nd 4.0 issn 2563-9269 ihtp 222 nurses must use the power of dialogue to speak up to improve the safety and effectiveness of patient care across jurisdictions. they must believe in their power as health educators, researchers, and advocates to change the future of healthcare and speak up for a healthcare model that places patients as an active agent in society. nurses are required to continue working to the best of their capability while protecting their own physical and mental health and the health of the public. instead of conforming to the current reality, nurses must use the power of dialogue to continue advocating for better salaries and workplace conditions that if not addressed can greatly diminish the nursing profession and nursing care. nurses around the world are stronger together and essential together, and by coming together and using the power of dialogue they can transform the reality that perpetuate injustice and neglect toward the nursing profession and those it purports to care for. references arnetz j.e., goetz c.m., arnetz b.b., arble e. (2020). nurse reports of stressful situations during the covid-19 pandemic: qualitative analysis of survey responses. international journal of environmental research and public health, 3;17(21):8126. doi: 10.3390/ijerph17218126. pmid: 33153198; pmcid: pmc7663126. durakoglu, a. (2013). paulo freire’s perception of dialogue-based education. international journal on new trends in education and their implications, 4(3), 102–107. freire, a.m.a., & vittoria, p. (2007). dialogue on paulo freire. interamerican journal of education for democracy,1(1),97–117. freire, p. (1970). pedagogy of the oppressed. seabury press. galanis p., varka i., fragkou d., et al. (2021). nurses’ burnout and associated risk factors during the covid-19 pandemic: a systematic review and meta-analysis. journal of advanced nursing. doi:10.1111/jan.14839. giroux, h. (1985). the politics of education, culture, power, and liberation (d. macedo trans.), (pp. xi-xxv). bergin & garvey publishers inc international council of nurses policy brief. (2021a) global nursing shortage and nurse retention. 2021. https://www.icn.ch/sites/default/files/inlin efiles/icn%20policy%20brief_nurse%20s hortage%20and%20retention_0.pdf international council of nurses. (2021a). mass trauma experienced by the global nursing workforce. geneva: international council of nurses; 2021. https://www.icn.ch/sites/default/files/inlin efiles/icn%20covid19%20update%20r eport%20final.pdf lavin, m. a., meyer, g. a., & ellis, p. (2007). a dialogue on the future of nursing practice. international journal of nursing terminologies and classifications, 18(3), 74–83. https://doi.org/10.1111/j.1744618x.2007.00055.x okigbo, c. (1996). contextualizing freire in africa sustainable development. africa media review 10(1), 31-54. roberts, p. (1998). extending literate horizons: paulo freire and the multidimensional word. educational review, 50(2), 105– 114. http://journals1.scholarsportal.info.proxy. queensu.ca/pdf/00131911/v50i0002/105 _elhpfatmw.xml smith, m. k. (1997, 2002). paulo freire and informal education. the encyclopedia of informal education. http://infed.org/mobi/paulo-freiredialogue-praxis-and-education/ something’s tufte, t., mefalopulos, p. (2009). participatory communication: a practical guide. the world bank: washington, d.c. ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 193 gender, time-use, and health: a scoping review kanika sharma1, ramila bisht2 1department of sociology, emory university, atlanta, u.s.a; 2centre of social medicine and community health, school of social sciences, jawaharlal nehru university, new delhi, india corresponding author: k. sharma (kanika.sharma@emory.edu) abstract introduction: time-use research is a useful approach to examine the health impacts of how people spend their time and the factors that influence their time. one such factor is gender. aim: this study undertakes a scoping review to map and synthesize recent research done on the interrelationships among gender, time-use, and health. design: web of science and pubmed electronic databases were searched to identify research published between 2015 and 2020. forty-four studies that met the eligibility criteria were selected. results: most studies on the topic are quantitative in nature, focus on developed country contexts, and have mental health and nutrition as thematic health focus. there is diversity in the kinds of population being studied, with an increasing focus on children and adolescent populations. conceptual findings reveal multi-directional and life-course aspects of the relationship; point that the relationship between time-use and health varies by the stage of the epidemiological and the nutrition transition; and highlight the need to study the health and well-being impacts of gendered caregiving. conclusion: this review highlights the need to conduct qualitative studies, give attention to health outcomes such as chronic illnesses, occupational health issues, and physical pain, and increase research focus on developing country contexts where gender inequality in time-use and health is severe. keywords gender, health, scoping review, time-use introduction time-use research is gaining much-deserved recognition as a useful approach in public health (chau et al. 2019). as bauman et al. (2019:1) note, “public health researchers are becoming interested in the behaviors and attributes that can be measured across the 24 h day, and in the interrelationships of health-enhancing and health-compromising behavior across a temporal spectrum”. time-use research, which looks at how people spend their time over a specific period, can be effectively used to study these behaviors. moreover, it can shed light on the important factors that impact people’s time and thus their health (hirway, 2000). one such crucial factor is gender. a large global body of literature shows that gender influences the way everyone spends their time and the kind, extent, and intensity of activities they engage in (connelly & kongar 2017). while there has been a substantial focus on gender and time-use, relatively less attention has been paid to the subsequent health consequences of gender inequality’s relationship with time-use. this scoping review on interrelationships among gender, time-use, and health attempts to fill the gap. the interdisciplinary and heterogeneous nature of the topic lends itself well to a scoping review (peters et al. 2015). in addition, a general lack of time-use data from developing country contexts necessitates an exploratory approach (rubiano-matulevich & kashiwase 2018). therefore, this scoping review aims to systematically map the recent global research on ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 194 this topic. more specifically, we ask the following research questions: what is the nature of the last five years of research on interrelationships among gender, time-use, and health? what conceptual findings are emerging in the recent research on interrelationships between gender, time-use, and health? additionally, we ask a sub-question: what health themes or concerns have been covered in recent literature on interrelationships between gender, time-use, and health? prior scholarship looking at these interrelationships has largely been sociological in nature. bird and fremont (1991) conceptualized that the amount of time spent by a person is tied with their gendered social role, and that gendered social roles have a direct relationship with health outcomes. similarly, glass and fujimoto (1994) found that time spent in gendered “role overload” (i.e., men doing more paid work and women doing more household work) was associated with the occurrence of depression. they also reported that the time spent on housework was universally associated with increased depression. researchers have also found that the stress created by gendered time-use patterns among women was associated with unhealthy coping strategies, alcohol use, overeating, lack of rest or leisure, and reduced time in exercise (nomaguchi & bianchi 2004). in more recent work, offer and schneider (2011) revisit the gender gap in time-use and report that mothers spent more time multitasking (particularly tasks related to housework and childcare) than fathers. this increased multitasking was associated with increased negative emotions and stress. studies have also shown that gendered time-use not only impacted an individual’s health but also the health of their family members such as children. cawley and liu (2012) found that working mothers were able to spend less time in activities related to the child’s diet and exercise than non-working mothers, leading to an increase in childhood obesity. much of this prior literature focused on mental and emotional health and nutrition health outcomes. however, other health issues and concerns, specifically chronic illnesses were hard to find. research on the impact of gendered caregiving activities on health was also scarce. most studies were about adult and married populations, and thus little was known about gendered time use patterns and health impacts of adolescents and younger populations, especially adolescent girls who may be involved in household activities in developing country contexts. finally, developing country contexts have been underrepresented in this global scholarship, partly due to the lack of large-scale and representative time-use data in these countries. study aim given these broad limitations of the previous scholarship, it is useful to assess the current state of research on gender, time-use, and health. this scoping review aims to examine the last five years of global research in the areas of social sciences and public health disciplines. methods design following the scoping review methodological framework (arksey and o’malley 2005), this paper adopts an expansive and iterative review process. guided by the prisma extension for scoping reviews (tricco et al. 2018), we report all the applicable items and discuss their rationale in the following sections. eligibility criteria although a protocol was not drafted before the review began, we used the following eligibility criteria for inclusion and exclusion for potential papers: i) must be a research paper published between 20152020 (to ensure focus on recent patterns before covid-19’s impact on research); ii) must focus substantially on all three concepts and their interrelationships; iii) should use time-use research approach and/or time-use data; iv) should be a research paper reporting findings of a primary or secondary study (as opposed to commentary/protocol/ or review papers); v) must be published in a peer-reviewed journal (i.e., not a book chapter, conference proceedings, or dissertation); and vi) should be written in english. for inclusion, papers could be focused on any human population (any genders, patient-types, or communities), any health outcome, any research method (qualitative, quantitative, or mixed), and any context or part of the world. the eligibility criteria were kept broad yet ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 195 specific to capture both the breadth and the depth of the research literature. both the authors worked collaboratively in developing the eligibility criteria. information sources and search to identify relevant papers, web of science and pubmed databases were searched. web of science is a social sciences oriented bibliographic database, while pubmed is health oriented. these databases, therefore, are representative of the social sciences and public health research that this review aims to assess. since the aim was to look at published academic research, we did not search for any sources of gray literature. to keep the search broad and maximize coverage, we used a basic search strategy (as opposed to advanced or boolean search) in both the databases. the final strategy for both databases is shown in figure 1. to ensure comprehensive coverage, the first step of the database search was conducted multiple times, with the last search for both databases being executed on december 10th, 2020, to achieve the most recent information. selection of evidence the results yielded by the search strategy were screened at multiple stages. after removing the duplicates, the first stage of screening took place where titles and abstracts were reviewed. at this stage, several papers that did not have a relevant focus on the topic were excluded. in the second stage, full-text of the papers were reviewed for eligibility criteria, and exclusions were made most for papers that: i) did not report findings of a primary or secondary study (i.e., were reviews) ii) did not have a substantial focus on all three concepts and/or their interrelationships, or iii) did not use time-use research approach. after the last stage of screening, articles were selected for analysis and synthesis. the original prisma flow diagram template served as a guide for the screening process. data charting and synthesis of results we used an iterative process to create a data charting form in excel to extract relevant data items from the selected studies. at first, the form contained general characteristics of the paper (paper title, author name, journal name, year of publication, study type, method, and sample size). to examine geographical and population focus, we also extracted information on the country and population studied by each paper. finally, health themes captured by the paper along with the main findings were added for each paper. to synthesize the results from the selected and charted studies, we summarized each included source in terms of its overall health theme, country/region of focus, study design, sample size, population, and main findings. both the authors worked collaboratively on data charting, coding, and synthesis of results. results as shown in figure 2, the database search yielded 260 non-duplicate sources. of these, 175 were excluded after screening the title and abstract for lack of relevance. full text of 85 sources were assessed further for eligibility. finally, a subset of 44 sources were included in the scoping review (table 1). in the following section, we discuss the characteristics of recent research in terms of regional, population, study design, and health theme focus. we then discuss conceptual findings based on the review of the selected studies. characteristics of recent research this review finds that most of the recent research on this topic has come from the field of public environmental occupational health, followed by economics. while social sciences disciplines such as sociology and women's studies are represented, their share is smaller compared to public health fields figure 3. many countries represented in the review were high-income. the highest representation is of the united states alone (n=10), followed by studies that focus on combinations of us and other european countries (n=8). six studies are from asia (india=3, china=2, and thailand=1), three from south america (peru=1; brazil=2), and only two studies from africa (tanzania and algeria). in terms of population focus, diversity seems to be increasing in recent research. while most studies focused on adult populations of 18 to 60 years (n=7), ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 196 studies on school students, adolescents, parents, and older adults such as parents and elders have also been conducted (n=4 each). additionally, studies on caregivers (n=3), workers (n=2), and children (n=2) also feature in the literature. compared to older scholarship, studies on couples seem to have decreased in this period (n=3), as researchers turned their attention to other population subgroups. quantitative study designs continue to dominate the research on gender, time-use, and health. out of 44 selected studies, only 2 are qualitative and 2 are mixed methods studies. six studies were longitudinal, and the remaining were cross-sectional. a large majority of studies were quantitative analysis of secondary data and time-use data. among the included studies, the health theme that received the most focus is mental health (n=11). the second most featured theme is nutrition, with 9 studies focusing on nutrition outcomes along and another 3 focusing on nutrition and physical activity. a new health theme that is emerging in the literature is related to rest, sleep, and leisure (n=7). similarly, self-reported well-being and health have also received research attention, as 7 out of 44 studies focused on this theme. conceptual findings on interrelationships among gender, time-use, and health multi-directional relationships the overall findings from the selected studies emphasize the several ways in which these social categories are linked. first, many studies document gender inequality and time-use. indeed, this is the standard in the literature. relationships between time use and health, mediated through gender inequality, however, are more multi-dimensional. in addition to studies showing time use effects on health, health and well-being may also affect timeuse. as it is with gender inequality in time use which may shape health, gender differences in health and well-being may also influence time-use patterns. although studies could do a better job of disentangling these interrelations figure 4 suggest potential effects. time-use and the nutrition transition many studies in this review are concerned with the effect of time use on nutritional outcomes, such as diet, body-mass-index, and calorie consumption. interestingly, the context of the study often determines the health outcomes they consider. studies in developing countries often consider undernutrition among women as the outcome, with agricultural or household work as the exposure variables (komatsu, malapit, balagamwala, 2019). on the other hand, studies from more developed contexts are concerned about outcomes such as obesity and behaviors such as exercise and cooking at home (gough, lippert, and martin 2019). moreover, while developed country contexts have a variety of health themes that they focus on, nutrition seems to be the focus for almost all the studies from developing country contexts. time use, gender inequality, and health across the life-course although we did not find any study that tracks gender inequality and time-use across the life-course, taken together, the literature emphasizes the role of gendered life course transitions in shaping health and time-use. many studies consider life course transitions independently. several existing studies consider childhood, adolescence, young adults, marriage into childhood, working-age adults, as well as differences in and due to retirement. for instance, schott et al. (2019) in peru find that women’s adolescence transitions were associated with increases in adiposity while for boys they were not. during the transition more sleep was associated with less adiposity among boys, but not among girls, suggesting that usual patterns are disrupted at this time. many studies of adolescents consider time in television or video game activities, particularly in developed country contexts (domoff et al. 2020; twenge & martin 2020). in a developing country study from india, roy (2020) found that girls were twice as likely to spend time doing household chores, and had less rest, sleep, or leisure. passias, sayer, and pepin (2017) consider marriage as an exposure and find that black single mothers have the highest extent of socially isolated leisure among women who are married or not. they find that although non-married women, in general, have more total leisure, their leisure activities are less fulfilling ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 197 and more socially isolating. (lindo, schaller, and hansen 2018) find gendered effects of time use on children’s health when men get unemployed, children were more likely to experience maltreatment in california than when women got unemployed. instead, female employment was correlated with child maltreatment, suggesting that women have social responsibilities for childcare which, if they escape, may have negative consequences for children. focusing on the elderly, (gutierrez, milani, wong 2020) report that time-use in community and volunteering activities was associated with lower odds of having depressive symptoms among the mexican older population. in a multi-country comparative analysis (germany, spain, the uk, and the us), (adjei, brand, zeeb, 2017) find that time devoted to passive leisure (as opposed to active leisure) and personal activities were negatively associated with self-reported health among women. gendered caregiving and health it is well-established in the health literature that caregiving, particularly informal caregiving, takes a toll on the health of the caregivers (pinquart & sörensen 2007). however, it is surprising to find that the recent scholarship on gendered time-use and health has focused marginally on this important aspect of people’s activity. out of all the included studies, only three focused on informal caregiving, and one focused on caregiving done by nurses. furthermore, most of the studies were in highincome regions around the world (with exception of the study on formal caregiving by nurses from brazil), which reinforces the need for further research in this area in developing countries. in one of the studies that focus on informal caregiving, stanfors, jacobs, & neilson (2019) find that across sweden, the uk, and canada, women provided more unpaid caregiving and thus made trade-offs in terms of paid work and leisure time. in another study, tabler & geist (2019) examine the effect of time-use on housework and adult caregiving on depressive symptoms for male and female caregivers. they found that while caregiving was associated with increased depressive symptoms, time spent in housework was associated with a decrease in depression for both men and women and particularly for women caregivers. despite gender differences in housework, authors note that housework’s positive impact on depression among female caregivers could be related to the benefits of staying physically active as well as to the continuity in performance of gender normative behaviors. discussion in this scoping review, we identified 44 studies on the interrelationships among gender, time-use, and health. although some studies from developing countries are present, the findings of this review indicate that much of the global research continues to be overrepresented by developed country contexts. the review also finds that mental health and nutrition are the health themes receiving the most attention, while outcomes related to chronic illnesses are missing. finally, the studies hint at the multidirectionality and life-course approach of the relationship between gender, time-use, and health, though better efforts need to be made in explicating these conceptual findings. in terms of limitations, this review captured limited academic literature in the form of published research papers and excludes book chapters, working papers, and dissertations. moreover, we did not crossreference the selected studies or looked at gray literature because of time and resource constraints. relatedly, the review process, particularly screening and assessing the sources should be done by a larger team of reviewers. finally, it is important to note that time-use studies, while extremely useful, have some conceptual limitations as well. they do not always capture the intensity or overlapping nature of work, both of which have a direct bearing on health. future efforts should address these methodological and conceptual limitations. despite the limitations, this scoping review has several implications for future research. a clear agenda is to conduct more qualitative studies that can bring out the important processes and lived experiences related to the health impacts of gendered time-use. there is also a need to give attention to health outcomes beyond mental health and nutrition such as chronic illnesses, occupational health issues, and physical discomfort and pain which are linked to gendered daily activities. finally, there is an urgent need to increase research focus on ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 198 developing country contexts where there is evidence of more severe gender inequality in time-use and health. conclusions this review highlights that despite the increasing diversity in kinds of populations being studied, with a multidimensional and life course focus, there is a need to conduct qualitative studies; study the health and well-being impacts of gendered caregiving; give attention to health outcomes such as chronic illnesses, occupational health issues, and physical pain; and increase research focus on developing country contexts where gender inequality in time-use and health is severe. references adjei, n, k., brand, t. (2018a). “investigating the associations between productive housework activities, sleep hours and selfreported health among elderly men and women in western industrialised countries.” bmc public health 18(1):1–10. adjei, n, k., brand, t. (2018b). “investigating the associations between productive housework activities, sleep hours and selfreported health among elderly men and women in western industrialised countries.” bmc public health 18(1):1–10. adjei, n, k., brand, t., zeeb, h. (2017). “gender inequality in self-reported health among the elderly in contemporary welfare countries: a cross-country analysis of time use activities, socioeconomic positions and family characteristics.” plos one 12(9): e0184676. adjei, n, k., jonsson, k. r., brand, t. (2018). “time spent on work-related activities, social activities and time pressure as intermediary determinants of health disparities among elderly women and men in 5 european countries: a structural equation model.” international journal for equity in health 17(1):1–12. brooks, f.m., chester, k. l., smeeton, n. c., spencer, n. h. (2016). “video gaming in adolescence: factors associated with leisure time use.” journal of youth studies 19(1):36–54. cusatis, r., fergestrom, n., cooper, a., schoyer, k. d., kruper, a., sandlow, j., strawn, e., flynn, k. e. (2019). “too much time? time use and fertility-specific quality of life among men and women seeking specialty care for infertility.” bmc psychology 7(1):1–9. domoff, s. e., sutherland, e., , yokum, s., gearhardt, a. n. (2021). “the association of adolescents’ television viewing with body mass index percentile, food addiction, and addictive phone use.” appetite 157:104990. doi: 10.1016/j.appet.2020.104990. ferrar, k, golley, r. (2015). “adolescent diet and time use clusters and associations with overweight and obesity and socioeconomic position.” health education & behavior 42(3):361–69. flood, s. m., moen, p. (2015). “healthy time use in the encore years: do work, resources, relations, and gender matter?” journal of health and social behavior 56(1):74–97. flores, g., kieny, c., maurer, j. (2020). “deconstructing gender differences in experienced well-being among older adults in the developing world: the roles of time use and activity-specific affective experiences.” social indicators research 1– 34. gough, m., lippert, a. m., martin, m, a. (2019). “the role of time use behaviors in the risk of obesity among low-income mothers.” women’s health issues 29(1):23–30. gutierrez, s., milani, s. a., wong, r. (2020). “is ‘busy’ always better? time-use activities and depressive symptoms among older mexican adults.” innovation in aging 4(5): igaa030. hunt, e., mckay, e. a., dahly, d. l., fitzgerald, a. p., perry, i. j. (2015). “a person-centred analysis of the time-use, daily activities and health-related quality of life of irish schoolgoing late adolescents.” quality of life research 24(6):1303–15. jarosz, e. (2018). “lifestyle behaviours or socioeconomic characteristics? gender differences in covariates of bmi in hungary.” obesity science & practice 4(6):591–99. jiang, x., hardy, l. l., baur, l. a., ding, d., wang, l., shi, h. (2015). “sleep duration, schedule and quality among urban chinese children and adolescents: associations with routine ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 199 after-school activities.” plos one 10(1):e0115326. jonsson, k. r., oberg, g., samkange-zeeb, f., adjei, n. k. (2020). “determinants and impact of role-related time use allocation on selfreported health among married men and women: a cross-national comparative study.” bmc public health 20(1):1–15. kerr, a. (2019). “household investment in durable appliances and outcomes for children: evidence from china.” labour economics 58:110–27. king, t. l., taouk, y., lamontagne, a. d., maheen, h., kavanagh, a. m. (2021). “gendered associations between household labour force participation and mental health using 17 waves of australian cohort data.” social psychiatry and psychiatric epidemiology 56(6):1035–47. doi: 10.1007/s00127-02001970-1. komatsu, h., malapit, h., balagamwala, m. (2019). “gender effects of agricultural cropping work and nutrition status in tanzania.” plos one 14(9):e0222090. leineweber, c., falkenberg, h., albrecht, s. c. (2018). “parent’s relative perceived work flexibility compared to their partner is associated with emotional exhaustion.” frontiers in psychology 9:640. lindo, j. m., schaller, j., hansen, b. (2018). “caution! men not at work: gender-specific labor market conditions and child maltreatment.” journal of public economics 163:77–98. martins, p. c., oliveira, v. h., mendes, s. m., fernández-pacheco, g. (2021). “after-school time use of urban adolescents: effects on achievement, problem behaviors, and happiness.” journal of leisure research 52(3):286–306. martin-storey, a., prickett, k. c., crosnoe, r. (2018). “disparities in sleep duration and restedness among same-and different-sex couples: findings from the american time use survey.” sleep 41(8):zsy090. matthews, c, e., berrigan, d., fischer, b., gomersall, s. r., hillreiner, a., kim, y., leitzmann, m. f., saint-maurice, p., olds, t. s., welk, g. j. (2019). “use of previous-day recalls of physical activity and sedentary behavior in epidemiologic studies: results from four instruments.” bmc public health 19(2):1–13. matud, m., bethencourt, j. m., ibáñez, i. (2015). “gender differences in psychological distress in spain.” international journal of social psychiatry 61(6):560–68. negraia, d. v., yavorsky, j. e., dukhovnov, d. (2019). mothers’ and fathers’ well-being while parenting: does the gender composition of children matter? wp-2019-013. max planck institute for demographic research, rostock, germany. padmaja, r., pramanik, s., pingali, p., bantilan, c., kavitha, k. (2019). “understanding nutritional outcomes through gendered analysis of time-use patterns in semi-arid india.” global food security 23:49–63. passias, e. j., sayer, l., pepin, j. r. (2017). “who experiences leisure deficits? mothers’ marital status and leisure time.” journal of marriage and family 79(4):1001–22. pereira, a. v., santos oliveira, s., rotenberg, l. (2018). “the self-confrontation with own time as an analytical perspective in the study of relations between time and health.” ciência & saúde coletiva 23:2393–2402. pinto, k. a., harter griep, r., rotenberg, l., da conceição chagas almeida, m., sousa barreto, r., aquino, e. m. l. (2018). “gender, time use and overweight and obesity in adults: results of the brazilian longitudinal study of adult health (elsa-brasil).” plos one 13(3):e0194190. rao, n., raju, s. (2020). “gendered time, seasonality, and nutrition: insights from two indian districts.” feminist economics 26(2):95–125. raskind, i. g., patil, s. s., tandon, n., thummalapally, s., kramer, m. r., cunningham, s. a. (2020). “household chores or play outdoors? the intersecting influence of gender and school type on physical activity among indian adolescents.” health education & behavior 47(5):682–91. rasmussen, c. l., palarea-albaladejo, j., bauman, a., gupta, n., nabe-nielsen, k., birk jørgensen, m., holtermann, a. (2018). “does physically demanding work hinder a physically active lifestyle in low socioeconomic workers? a compositional data analysis based on accelerometer data.” international journal of environmental research and public health 15(7):1306. ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 200 roeters, a., van houdt, k. (2019). “parent–child activities, paid work interference, and child mental health.” family relations 68(2):232– 45. rokicka, m., zajkowska, o. (2020). “informal elderly caregiving and time spent on leisure: evidence from time use survey.” ageing international 45(4):393–410. roy,p. (2020). “gender, time use, and food consumption in india.” gender, technology and development 24(3):378–96. saksiriruthai, s. (2017). “housework efficiency and economical systems$\backslash$development: a case study of thailand.” international journal of ecological economics & statistics 38(4):115– 22. schott, w., aurino, e., penny, m. e., behrman, j. r. (2019). “time use and sexual maturity related indicators differentially predict youth body mass indices, peruvian girls versus boys.” annals of the new york academy of sciences. shakir, r. n., coates, a. n., olds, t., rowlands, a., tsiros, m. d. (2018). “not all sedentary behaviour is equal: children’s adiposity and sedentary behaviour volumes, patterns and types.” obesity research & clinical practice 12(6):506–12. sprod, j. a., olds, t. s., burton, n. w., brown, w. j., van uffelen, j. g., ferrar, k. e., maher, c. a. (2016). “patterns and correlates of time use and energy expenditure in older australian workers: a descriptive study.” maturitas 90:64–71. stanfors, m., jacobs, j. c., neilson, j. (2019). “caregiving time costs and trade-offs: gender differences in sweden, the uk, and canada.” ssm-population health 9:100501. tabler, j., geist, c. (2019). “do gender differences in housework performance and informal adult caregiving explain the gender gap in depressive symptoms of older adults?” journal of women & aging 33(1):41–56. tiliouine, h., rees, g., mokaddem, s. (2019). “changes in self-reported well-being: a follow-up study of children aged 12–14 in algeria.” child development 90(2):359–74. tricco, a. c., lillie, e., zarin, w., o’brien, k. k., colquhoun, h., levac, d., moher, d., peters, m. d. j., horsley, t., weeks, l. (2018). “prisma extension for scoping reviews (prisma-scr): checklist and explanation.” annals of internal medicine 169(7):467–73. twenge, j. m., martin. g. n. (2020). “gender differences in associations between digital media use and psychological well-being: evidence from three large datasets.” journal of adolescence 79:91–102. ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 201 figure 1. search strategy for web of science and pubmed * note: limits included were slightly different in the two databases because of the available options web of science keywords entered: gender time-use health limits included*: time: last five years document type: journal article language: english pubmed keywords entered: gender time-use health limits included*: time: 1 jan 2015 to 31st dec 2020 species: human article type: journal article language: english ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 202 figure 2. flow diagram of the review process records identified through database searching (n = 262) id en ti fic at io n records after duplicates removed (n = 260) full-text articles assessed for eligibility (n = 85) full-text articles excluded, with reasons (n = 41) not time-use research:6 health not considered substantially:3 gender not considered substantially:32 studies included in synthesis (n = 44) sc re en in g el ig ib ili ty in cl ud ed records excluded (n = 175) records screened (n = 260) ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 203 table 1: studies included in the scoping review article title year of publication author(s) country / region study-design sample size population health theme main findings time use and sexual maturityrelated indicators differentially predict youth body mass indices, peruvian girls versus boys 2019 schott et al peru longitudinal 2,766 children, youth nutrition a) gender differences in obesity exposures observed. b) for boys, paid and domestic work increased adiposity, while sleep reduced it. c) for girls, maturity related indicators predicted increases, regardless of time use. is "busy" always better? timeuse activities and depressive symptoms among older mexican adults 2020 gutierrez et al mexico quantitative 4,309 elderly mental health a) more activities indoor were associated with higher odds of depression among both men and women. b) volunteer and community activity were associated with lower odds of depression among women, but not men. the association of adolescents' television viewing with body mass index percentile, food addiction, and addictive phone use 2020 domoff et al us quantitative 190 adolescents nutrition a) girls had more tv time than boys; b) however, for boys, more tv viewing was positively associated with more addictive phone use and addictive eating. too much time? time use and fertility-specific quality of life among men and 2019 cusatis et al us quantitative 156 couples mental health, fertility a) women seeking infertility care spent a higher time in research, discussion, reflection compared to their male partners. b) more time spent reflecting was more anxiety in ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 204 women seeking specialty care for infertility some domains for women, but all domains for men. understanding nutritional outcomes through gendered analysis of timeuse patterns in semi-arid india 2019 padmaja et al india cross-sectional 1,284 adults nutrition a) agricultural interventions can increase women's work, which was observed to increase undernourishment in the sample b) qualitative findings supported that this was because of increased burden of work caregiving time costs and tradeoffs: gender differences in sweden, the uk, and canada 2019 stanfors et al sweden, uk, canada quantitative analysis 173,224 caregivers caregiving; rest, sleep, leisure a) women are more likely to be caregivers within the family in the uk and canada, but not in sweden b) intensive caregiving was negatively associated with everyday leisure time in sweden, the uk and canada. use of previousday recalls of physical activity and sedentary behavior in epidemiologic studies: results from four instruments 2019 mattews et al australia, new zealand, germany, us mixed methods 8,286 adults physical activity; rest, sleep, leisure a) women spent more time on chores, in light physical activity, and less time in moderate-vigorous physical activity than men. b) men reported more leisure time than women. c) household activities and caring are substantial contributors to overall physical activity energy expenditure women reported doing more of this type of activity changes in selfreported wellbeing: a followup study of children aged 12-14 in algeria 2019 tiliouine et al algeria longitudinal 443 children selfreported health a) girls were significantly more likely than boys to help with housework and do homework. b) boys were significantly more likely than girls to play sports or exercise. c) boys were also more likely to take classes ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 205 outside school, to take part in organized leisure activities, to spend time using a computer, and to spend time alone. d) with age, satisfaction with school decreased more for boys than for girls, but satisfaction with family, time use, and material possessions decreased for girls gender, time use and overweight 2018 pinto et al brazil quantitative analysis 15,105 adults; civil servants nutrition a) a greater proportion of women compared to men reported insufficient time for personal care and leisure. b) insufficient time for personal care and leisure was associated with overweight and obesity only in women working over 40 hours/week. the selfconfrontation with own time as an analytical perspective in the study of relations between time and health [corrected] 2018 pereira et al brazil mixed methods 42 adults; nurses caregiving; rest, sleep, leisure a) nurses thought that they had too little time for themselves. b) work overload was particularly severe among women nurses, who had a difficult time juggling work and household responsibilities time spent on work-related activities, social activities and time pressure as intermediary determinants of health disparities among elderly 2018 adjei et al italy, spain, uk, france, netherlands. quantitative analysis 25,463 elderly selfreported health a) socioeconomic status (ses), demographic factors, stress, and work-related time use after retirement had significant influence on self-reported health among the elderly b) the magnitude of the effects varied by gender social activities had a positive impact on self-reported health but had no significant impact on stress among ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 206 women and men in 5 european countries: a structural equation model older men and women. c) paid work was negatively associated with stress among men, but household work had stress effects for both parent's relative perceived work flexibility compared to their partner is associated with emotional exhaustion 2018 leinewber et al sweden cross-sectional 2,911 parents mental health a) being a mother was associated with higher levels of emotional exhaustion, independent of possible confounders. b) mothers spent more time on household chores as compared to fathers, while fathers reported longer working hours. c) fathers spent more time on relaxation compared with mothers. not all sedentary behaviour is equal: children's adiposity and sedentary behaviour volumes, patterns and types 2018 shakir et al australia quantitative 234 children nutrition; physical activity a) daily energy expenditure and income negatively associated with adiposity for both sexes, and television time positively associated b) in boys, sedentary behaviour and playing video games/computer linked with adiposity. c) in girls, nonscreen sedentary behaviour negatively associated with adiposity gender inequality in selfreported health among the elderly in contemporary welfare countries 2017 adjei et al germany, spain, uk, us longitudinal 31,415 elderly selfreported health a) time in paid work, housework and active leisure were positively associated with health, b) passive leisure and personal activities were negatively associated with health among both men and women c) the magnitude of the association varied by gender and country ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 207 patterns and correlates of time use and energy expenditure in older australian workers: a descriptive study 2016 sprod et al australia qualitative 120 elderly; workers nutrition; physical activity a) women spent more time doing chores while men spent more time on vigorous activities. b) participants with worse health spent less time on chores and grooming than healthier participants. a personcentred analysis of the time-use, daily activities and healthrelated quality of life of irish school-going late adolescents 2015 hunt et al ireland cross-sectional 731 adolescents selfreported health a) article identified male profiles: productive, high leisure, and allrounder. two female profiles, higher study/lower leisure and moderate study/higher leisure were identified. b) females in the moderate study/higher leisure group were twice as likely to have aboveaverage global health-related quality of life than females in higher study/lower leisure profile healthy time use in the encore years: do work, resources, relations, and gender matter? 2015 flood & moen us quantitative analysis 11,952 elderly physical activity; rest, sleep, leisure a) work limits sufficient sleep and television watching and time spent in physical activity. b) collegeeducated and healthy encore adultsacross age and gender more likely to exercise and watch less television. c) marriage and caregiving encourage socializing and limit television watching, despite differential effects on physical activity and sleep. adolescent diet and time use clusters and associations with overweight and obesity and 2015 ferrar & golly australia quantitative 1,853 children and adolescents nutrition; physical activity a) study identified four sex-specific time use and diet clusters. for both boys and girls, three clusters were identified by co-occurring time use and dietary intake behaviors and the remaining cluster was identified solely by time use behaviors. b) two ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 208 socioeconomic position clusters were associated with a reduced frequency of overweight and obesity (the boys’ active sitter and girls’ healthy academic clusters) and one with an increased frequency of overweight and obesity (the boys’ unhealthy cluster) gender differences in psychological distress in spain 2015 matud et al spain quantitative 2,588 adults mental health a) women had more distress than men b) women’s distress associated with more childcare time and less to activities they enjoy breakfast skipping, extreme commutes, and the sex composition at birth 2015 mazumder & seeskin us quantitative 8,233 adolescents and adults nutrition a) women with longer commutes more likely to skip breakfast sleep duration, schedule and quality among urban chinese children and adolescents: associations with routine afterschool activities 2015 jiang et al china cross-sectional 6,247 school children rest, sleep, leisure a) on school nights, girls slept less and went to bed later b) this sex difference that was more pronounced in older students. c) sex differences were also observed in sleep duration, schedule, and quality mothers' and fathers' wellbeing: does the gender composition of children matter? 2019 negraia et al us quantitative analysis 8,621 parents mental health a) fathers reported greater stress parenting all girls and mixed gender children. b) mothers reported greater fatigue and stress parenting all girls compared to parenting all boys. c) fathers spend more time in parenting when boys are present. ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 209 gendered associations between household labour force participation and mental health using 17 waves of australian cohort data 2020 king et al australia longitudinal 14,644 couples mental health a) both men and women have better mental health when in paid employment than when not in the labour force informal elderly caregiving and time spent on leisure: evidence from time use survey 2020 rokicka, m; zajkowska, o poland quantitative analysis 38,967 caregivers caregiving; rest, sleep, leisure a) caregivers are at risk ofttimes poverty, and the effect differs by gender and day type (working days v weekends). b) no clear female disadvantage was observed c) i general, caregivers for adults more likely to allocate less time to physical activity, hobbies, and social lives determinants and impact of role-related time use allocation on self-reported health among married men and women: a cross-national comparative study 2020 jonsson et al germany, italy, spain, the uk and the us quantitative analysis 59,796 adults selfreported health; rest, sleep, leisure a) significant gender differences in time allocation: women do less paid working time or reduce housework for childcare. b) men less likely to reduce paid hours to increase time spent on childcare, reduced housework instead. c) more time to paid work and childcare associated with good health. d)time spent on housework was associated with poor health, especially among women. deconstructing gender differences in experienced well-being among older adults in the 2020 flores et al china, ghana, india, russia, south africa quantitative analysis 21,488 elderly mental health a) study documents gender gap in experienced well-being in favor of men. b) women’s lower affect in most activities linked to the conditions under which activities are performed, particularly to higher ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 210 developing world: the roles of time use and activity-specific affective experiences level of disability of older women compared to men after-school time use of urban adolescents: effects on achievement, problem behaviors, and happiness 2020 martins et al portugal quantitative analysis 3,808 adolescents mental health a) girls more frequently involved with studying, creative and social activities than boys; less involved with sports and evenings out. household chores or play outdoors? the intersecting influence of gender and school type on physical activity among indian adolescents 2020 raskind et al india cross-sectional 395 school students rest, sleep, leisure a) girls spent twice as much active time completing chores, errands, and work; b) boys spent twice as much active time playing; c) gender differences were greater among public school students than among private school students gender, time use, and food consumption in india 2020 roy, p india quantitative mixed method 450 adults nutrition; rest, sleep, leisure a) women work by more than 2 hours compared to husbands; b) chronic energy input deficiency is higher among wives than their husbands. ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 211 gender differences in associations between digital media use and psychological well-being: evidence from three large datasets 2020 twenge & martin us, uk quantitative analysis 221,096 adolescents mental health a) girls spent more time on smartphones, social media, texting, general computer use, and online; b) boys spent more time gaming and on electronic devices. c) moderate or heavy digital media use and low psychological well-being/mental health were more strongly associated among girls than boys do gender differences in housework performance and informal adult caregiving explain the gender gap in depressive symptoms of older adults? 2019 tabler & geist us quantitative analysis 1,321 adults mental health; caregiving a) caregiving associated with increased depressive symptoms, b) time spent in housework associated with decrease in depression for both men and women and particularly for women caregivers, c) despite gender differences in housework, housework’s positive impact on depression among female caregivers could be related to benefits of staying physically active as well as to the continuity in performance of gender normative behaviors. gender effects of agricultural cropping work and nutrition status in tanzania 2019 komatsu et al tanzania quantitative analysis 5,513 adults; households nutrition a) bmi of women in households with a hand powered sprayer is positively related to time spent in weeding, fertilizing, and non-harvest activities, while it is negatively correlated for men gendered time, seasonality, and nutrition: insights from two indian districts 2020 rao & raju india longitudinal 60 adults; households nutrition a) women’s work in agriculture may have a negative effect on household nutrition through two pathways: lack of adequate time for care work in peak agricultural seasons, and seasonal energy deficits that adversely affect their own health ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 212 household investment in durable appliances and outcomes for children: evidence from china 2019 kerr, a china longitudinal 6,680 adults rest, sleep, leisure a) time-saving household appliances decrease children’s time allocated to household work; b) effects of appliance ownership on child outcomes are more pronounced among females. parent-child activities, paid work interference, and child mental health 2019 roeters &van houdt netherlands quantitative analysis 1,488 parents mental health a) children demonstrated better mental health when the frequency of father–child activities was higher and the amount of interference due to work was lower the role of time use behaviors in the risk of obesity among low-income mothers 2019 gough et al us quantitative analysis 17,914 adult women nutrition a) greater risk of overweight and obesity for mothers with low incomes compared to mothers with moderate/upper incomes and all childfree women b) mothers experiencing economic hardship at greater risk of overweight and obesity relative to other women. lifestyle behaviours or socioeconomic characteristics? gender differences in covariates of bmi in hungary 2018 jaros, e hungary quantitative analysis 7,765 adults nutrition a) daily behaviours were associated with bmi for women, but not for men, except for smoking. b) meal’s frequency and duration of sleep had negative effects on female bmi, duration of tv viewing had a positive effect. ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 213 disparities in sleep duration and restedness among same and different-sex couples: findings from the american time use survey 2018 martin-storey et al us quantitative analysis 17,378 couples rest, sleep, leisure a) no links between partner sex and sleep among men. b) women with same-sex partners reported lower restedness than women with different-sex partners. c) women with the same-sex partners living in states more supportive of sexual minorities reported better restedness than those in less supportive states. does physically demanding work hinder a physically active lifestyle in low socioeconomic workers? a compositional data analysis based on accelerometer data 2018 rasmussen et al denmark quantitative 895 workers rest, sleep, leisure a) men spending more waking leisure time than women, driven by women performing more household tasks caution! men not at work: gender-specific labor market conditions and child maltreatment 2018 lindo et al us quantitative analysis 832 counties adults mental health a) male employment is associated with reductions in child maltreatment and female employment is associated with increases in child maltreatment investigating the associations between productive housework activities, sleep hours and self2018 adjei & brand germany, italy, spain, uk, france, the netherlands and the us quantitative analysis 36,240 elderly selfreported health a) elderly women have higher odds of reporting poor health when more time is devoted total housework combined with either short or long sleep duration ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 214 reported health among elderly men and women in western industrialised countries who experiences leisure deficits? mothers' marital status and leisure time 2017 passias et al us quantitative analysis 24,616 parents rest, sleep, leisure a) black single mothers have the highest extent of socially isolated leisure. b) never-married mothers have more total leisure but less highquality leisure housework efficiency and economical systems' development: a case study of thailand 2017 saksiriruthai, s thailand quantitative analysis 3,672 households rest, sleep, leisure a) women are slightly less likely to spend time in work, much more likely to spend time in housework, and slightly less likely to spend time in leisure activities than men. b) with aging, involvement in household activities also rises, suggesting that older or less healthier individuals withdraw from paid work to do household work video gaming in adolescence: factors associated with leisure time use 2016 brooks et al uk cross-sectional 4,404 adolescents selfreported health a) girls with less life satisfaction were more likely to play video games than girls with more life satisfaction, this was not the case for boys; b) for boys, bullying or going to bed hungry was associated with video game use, this was not the case for girls ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 215 figure 3. visualization of top 25 disciplines represented in web of science search source: web of science ihtp, 2(2), 193-216, 2022 cc by-nc-nd 4.0 issn 2563-9269 216 figure 4. conceptual presentation of interrelationships among gender, health, and time-use identification screening eligibility included ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 61 exploring educators’ perception of issues involving planetary health: a qualitative study in the brazilian amazon special issue: planetary health paula regina humbelino de melo1, tatiana souza de camargo2, renato abreu lima3, thiago ferreira abreu4, raquel de andrade cardoso santiago5 1federal university of rio grande do sul (ufrgs) and federal university of amazonas (ufam), brazil; 2federal university of rio grande do sul (ufrgs), brazil and planetary health alliance, harvard university, usa; 3federal university of amazonas (ufam), brazil; 4federal university of rio grande do sul (ufrgs); 5school of nutrition of the federal university de goiás (ufg), brazil corresponding author: p. r. h. melo (paulinharhmelo@gmail.com) abstract background: planetary health is a transdisciplinary area that needs to be part of the curriculum of students at all levels of education, starting from basic education with early childhood education. the present work aims to discuss the perceptions of basic education teachers from a riverside school on planetary health issues, in addition to knowing the environmental context of communities and/or riverside schools in the brazilian state of amazonas. methods: the data collection was done through semi-structured interviews with rural education teachers from the south of the state of amazonas. for the data analysis, we opted for the content analysis (bardin, 2009) with the support of the n-vivo software version 1.5. results: the results indicated the main environmental problems related to anthropogenic actions in the community and school, in which the following questions stood out: garbage disposal in the river, mineral extraction, lack of basic sanitation, and the predominance of ultra-processed foods in school meals. on the other hand, teachers pointed out the great potential of rural schools to promote the consciousness of children and adolescents on planetary health themes. conclusion: primary school teachers in rural amazonia are in contact with a rich source for the creation of teaching materials on ph for students, in view of the importance of the inclusion of ph themes in the formative trajectory of children and adolescents in the basic education curriculum. these experiences provide knowledge about the reality of riverside schools, local traditional issues, environmental sustainability, and the changes occurring in ecosystems, especially in the amazon. keywords amazon, basic education, children and adolescents, planetary health background planetary health (ph) is a transdisciplinary field that was first made official in the scientific community in 2015 in a rockefeller-lacent commission report entitled safeguarding human health in the anthropocene epoch. it is a field that aims to understand the interrelationships and interdependence between humans and the environment, as well as to identify solutions for minimizing and adapting to the attacks that the planet has been facing, which severely compromise the future of humanity (whitmee et al., 2015). ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 62 natural ecosystems are undergoing significant transformations resulting from natural and human actions, with anthropogenic activities being the main responsible for the environmental imbalance that has been changing the dynamics of life on planet earth. authors consider that the planet is currently facing a new geological era, known as the anthropocene (crutzen, 2002; waters et al. 2016), an era marked by the action of man on planet earth and that have been causing many changes in natural ecosystems, especially climate issues. understanding human health conditioned to natural systems makes it possible to understand that losses and alterations in these systems bring significant losses to the health of the populations (whitmee et al., 2015; myers, 2017; floss & barros, 2019; iyer et al., 2021). significant changes in natural ecosystems include loss of biodiversity, extreme weather events, rising temperatures, deforestation, ocean acidification, sea level rise, and changes in biogeochemical cycles. planetary health assesses the negative impacts of the consequences of these ecosystem changes on the health and well-being of living organisms, among which many species have not even been identified and are threatened with extinction. the intensity of the changes in environmental ecosystems caused by human activities has been intensifying since the industrial revolution, so researchers introduced the existence of planetary limits stand out as a paradigm that assesses the risks that anthropogenic actions are jeopardizing in the maintenance of ecosystems at a planetary level (steffen et al., 2015). for rockström et al. (2009), planetary boundaries are safe operational dimensions between natural systems and humanity, being directly related to the planet's biophysical processes. planetary limits include global climate change, rate of biodiversity loss, interferences in the nitrogen and phosphorus cycle, stratospheric ozone depletion, ocean acidification, freshwater use, land use changes, chemical pollution and aerosol loading atmospheric. out of these nine limits established in studies, three planetary systems have already exceeded the established limits, which are the rate of loss of biodiversity, climate change and interference in the nitrogen cycle. these planetary dimensions allow us to think about the urgency to minimize and adapt the effects of human actions on terrestrial systems to ensure planetary health, especially when considering that these changes go beyond environmental preservation issues, which involve health, well-being, and prosperity (morisetti & jason, 2017; bell et al. al., 2018). amazon ecosystem: brief contextualization the amazon ecosystem is considered one of the richest carbon reserves in the world, also acting as a carbon sink (hope, 2019). this biome is considered a genuine laboratory of species with vast diversity, and many species are still not known to science (ceballos et al., 2020), which are traditional inhabitants that depend on the amazon biome for their survival (zaman, 2022). the amazon region is home to approximately 40,000 species of vascular plants, of which, almost 30,000 are endemic (mittermeier et al., 2003). one of the richest ecosystems on our planet is the amazon rainforest, located in six countries: brazil, bolivia, colombia, ecuador, peru, and venezuela. this biome is known worldwide for its rich biodiversity, hydrographic basin, and heterogeneity. however, deforestation of the amazon forest has been enormously compromising biodiversity and the dynamics of life on the planet since this forest influences the environmental balance worldwide. however, some authors point out that this sink is close to its inflection point, with the risk of transforming the largest world's tropical forest into a savannah and a significant carbon emitter (wit & mourato, 2022; sampaio et al., 2019). the anthropogenic actions are compromising the dynamic balance of ecosystems in the amazon region and its rainforest, threatening humanity since climate change compromises biodiversity, the process of water cycling, and carbon storage. all these elements have drastic effects on the health of populations, harming the way of life of forest guardians (delgado et al., 2022). ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 63 deforestation is mainly caused by fires, livestock activities, logging activities, land grabbing, impunity for environmental crimes, construction works, and political setbacks. according to data from the instituto do homem e meio ambiente da amazônia (imazon), in 2021, the amazon rainforest experienced a record of deforestation in the last ten years, a rate of 29% higher than in 2020, a total of 10,362 km2. amazonas was the second state that most deforested in 2021, with a devastated area with an increase of 49%, going from 1,395 km2 in 2020 to 2,071 km2 in 2021. amazon is “burning” and the rate of respiratory diseases also increases due to the effects of climate change, where the decrease in precipitation, fires associated with deforestation, and climate change are extremely harmful to communities due to air polluted with particles that have negative effects on human health (butt et al. 2021; machado-silva et al., (2020). the impacts of climate and environmental changes on human health are vital to align adaptive strategies for regions with more vulnerability, such as the amazon region (smith et al., 2014). besides deforestation and wildfires, water resources in the amazon represent the landscape and are the main sources of livelihood for many families living in riverside communities having fish as the animal protein most consumed by these residents (doria et al., 2018). yet, rivers, lakes, and streams are means of transportation in the gigantic amazon rainforest. for fearnside (2008), traditional peoples are threatened by climate change because they depend on the forest for their survival. thus, environmental policies and stricter inspections to protect people and the environment are fundamental. planetary health education: challenges and possibilities education is still a powerful strategy for changing human behavior, especially concerning interrelationships with environmental systems. the human species influences the natural systems in which they live and consequently suffer from the responses of these impacts, making it necessary to think about transdisciplinary proposals and guide solutions that understand and face environmental problems and their effects on health. guzmán et al. (2021) created a framework for an education in ph, with five domains that enable understanding of knowledge, practices in planetary health, such as: first domain "interconnection within nature" is about the essentiality of valuing and respecting nature and existing dimensions, including different knowledge and cultures. the second domain "anthropocene and health" addresses how environmental impacts which are connected to health. the third domain "systems thinking and complexity”where there are interactions between elements of nature and human health at different geospatial and temporal scales. the fourth domain "equity and justice" – is based on the rights of humans and the rights of nature, where everyone needs to achieve full vitality. the fifth domain "construction and systems change" is primordial for the construction of movements committed to solving the issues addressing planetary health. although the five domains were created as frameworks to guide education in planetary health for all levels of higher education, they can also be inserted in basic education, because of the rich vision of approaches that encompass essential issues for the integration of environmental and human health in brazil, the environment themes are part of the curriculum in basic education, as transversal themes, and official documents for education incorporates it, such as national curricular parameters (pcns) and national common curricular base (bncc). however, it is essential to expand the way of approaching environmental problems and think of broader perspectives, which make it possible for us to be in the anthropocene, with the same reason environmental changes cause damage to survival on the planet. ph is a recent area that should be part of all areas of activity, and basic education is fundamental for the insertion of such significant and necessary themes since the planet is going through environmental crises that need to be solved or minimized soon. in basic education, ph is still incipient. some works suggest an interconnection of themes involving natural ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 64 ecosystems and the way we live on planet earth. the são paulo declaration on planetary health brought up the need to teach ph at all levels of education with a multidisciplinary and participatory approach so that schools, teachers, students, parents, and communities can awaken to changes in the way of living on the planet earth, as a proposal for the protection the health of the planet, human health, and future generations (myers et al., 2021). upon this perspective, goal 4.7 of the 2030 agenda emphasizes that students must have knowledge and skills that allow them to promote sustainable development through education and lifestyle for sustainable development, human rights, gender equality, promotion of a culture of peace, nonviolence practices, global citizenship and appreciation of cultural diversity and the contribution of culture to sustainable development (un, 2015). to carry out the education in ph, a decolonial science approach is essential, where it is possible to promote interrelationships between scientific education and different types of knowledge, especially the dialogues with environmental themes with other knowledge, such as health, well-being, equity, and culture. in this context, the work sought to broaden the discussions about the categories of analysis, based on the perceptions of teachers, from a riverside school in the amazon region, about environmental problems, and how they permeate the educational context and the community involved in the perspective of expanding the space of the school as responsible for fostering representative notes for education. in this sense, this article aimed to understand teachers' perceptions from a riverside school on planetary health, considering local and global environmental issues, considering that rural schools in the amazon region still live in a context of inequality. it is worth noting that children and young people must be responsible for environmental sustainability, as they will be the most affected and/or benefited by the intensifying ecological changes. this study presents subsidies for reflections on the role of educational institutions on planetary issues, considering the biome of the amazon and its rainforest, climate changes, and the health of its populations. thus, research in school environments is potentiating and necessary towards themes such as planetary health. methods the research was carried out in a rural school in amazonas, brazil, created by decree #031/96 from october 25, 1996. located in a traditional riverside community named lago do uruapiara/am, at geographic coordinates 6°20'25"s 62°1'19"w, 172 km distant from the urban area of the municipality of humaitá/am (figure 1.). the study was of a descriptive qualitative nature to answer a main hypothesis, which is “how to teach planetary health to rural education students in amazonas, considering local environmental issues?” the research subjects were ten teachers from different subjects (natural sciences, portuguese language, mathematics, geography, history and physical education) who teach classes for elementary and high school in the rural school unit in amazonas. data collection the interviews lasted approximately half an hour for each teacher. for data collection, semi-structured interviews were carried out with school professionals. this collection technique is based on pre-formulated guiding questions (table 1), where respondents freely approach the topic (minayo, 2008). the interviews were recorded with the consent of the participants and transcribed in full, guaranteeing the anonymity of those surveyed. for the analysis of qualitative data, content analysis was chosen, being a set of techniques that aim to obtain an understanding of the topic studied, including three stages: preanalysis, exploration of the material and treatment and interpretation of the results (bardin, 2009). the interviews were recorded with the consent of the participants and transcribed in full, guaranteeing the anonymity of the respondents. for the analysis of qualitative data, content analysis was chosen, as a set of techniques that aim to obtain an understanding of the studied subject, including three stages: preanalysis, exploration of the material and treatment and interpretation of the results (bardin, 2009). data analysis ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 65 the pre-analysis of the data began with the transcription of the interviews, where the material was organized, the data transferred to the nvivo 1.5 software for organization, coding, and generation of results, following the content analysis method (bardin, 2009). to praise the methodological reliability in qualitative research, the contributions of cardano (2017) were sought. he describes the concept of qualitative research through which one can find the ways for the construction of accurate representations of social phenomena and their main values. with this methodological path, qualitative research specifically responds to a general requirement that covers the entire domain of social research that guide the complexity of the phenomena under study, including the principles of the theory of argumentation presented by the author in the qualitative research manual (cardano, 2017). table 2 consists of axes of formulated analysis in the initial stage. the codifications and their main references on the themes passed through the phase of interference, interpretation, and descriptive analysis of the data. thus, to better understand the analyses, a word cloud was created in the nvivo 1.5 software (figure 2.) to represent the frequency of the most cited words in the interviews. in the presentation of the research results, excerpts from the interviewees' statements are presented, always preserving their anonymity. ethics the research was submitted and approved by the ethics committee for research with human beings (cep) of the federal university of rio grande do sul (ufrgs/brazil), under the code caae 42320821.6.0000.5347, which is part of the data collection developed within the scope of doctoral activities in the graduate program in science education (ppgeci) at the ufrgs. results and discussion the study focused on a sample set of rural education teachers in amazonas to understand the issues on the themes of planetary health. with the word cloud presented from the interviews (figure 2), the terms most frequently mentioned by the teachers referred to the main environmental problems faced by the amazon region, which coincide with several other places on the planet. environmental catastrophes in southern amazonas from the thematic axis "environmental disasters and planetary health", we can figure out which are the main environmental problems that have arisen (deforestation, river littering, mineral extraction, temperature rise), pointing out for the need to insert public policies in educational institutions and the awareness for the pointed problems. it should be noted that the teachers were unanimous in answering that the planet is experiencing major environmental crises as well as understanding the harmful effects that humans have caused to planet earth by using the available natural resources inconsequently. some lines from these interviews are highlighted below. we talk a lot to them, about what can bring harm to the health of the planet, these environmental catastrophes, for example, pollution, burning, carbon dioxide, river pollution […], but we argue a lot about it, about wiping out all natural resources. it's not just the mining part. so, is the mining deforesting? well, it's polluting with the burning of fuel. it's deforesting because every mining raft cuts down a tree to make it, so it's deforesting, that is, one thing leads to another. some fires are very recurrent (teacher a). it's getting worse, it's getting hotter, it's not the needy people who do it, but the people who have money […], as long as people aren't aware that they're running out. for example, we tell students not to throw the trash on the floor and put it in the trash or their pocket until they see the garbage bin. but we work traveling and seeing people throwing cans and bags in the river. they know they can't do that, but they keep doing it, a very cultural issue and for not knowing what happens. when you don't have anything to eat or plant, the land doesn't have more minerals for plants to grow in the soil. everyone has to do a little, unity is strength, but unfortunately, it is complicated (teacher b). i think we are getting to the peak of what we are doing: pollution is an example. it's getting hotter, the floods changing the season. sometimes we think it's ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 66 going to dry up, and it's filling up. the air harms people with respiratory diseases because of this much-polluted climate, especially in big cities. some communities suffer from contamination by heavy metals. people who drink contaminated water pollute the rivers. in the community, there is a lot of mining; there is a large number of mining rafts (teacher c). every day things happen in the world that affects nature itself. things made by man, when we talk about it in schools, we don't have any support. there is a lack of public policy on this at school because it is at school that we have to guide this through. after all, there is no way to go from house to house guiding each family, and there at school, it is good to discuss these catastrophes and tell students that all this will worsen our form of life here (teacher d). with the word cloud organized from the fragments presented in the teachers' speeches, that clearly represent environmental catastrophes and planetary issues in the amazon through figure 3, where there are negative associations compromising planetary health. on the other hand, positive associations may represent beneficial integrations that need to be valued for mitigation and adaptation to planetary issues. the pollution of these bodies of water through the disposal of garbage in the river was one of the problems most pointed out in the interviews since the community is in the riverside context. in the specific case of this paper, the pollution of rivers and lakes seems to be a major problem, considering that teachers mainly mentioned the pollution of these ecosystems. plastic pollution in riverside environments is highlighted due to the harm done to local economic activities, making transport in these environments difficult, that contaminates the waters and compromises the livelihoods of the populations residing in these locations, what is also associated with floods (van emmerik & schwarz, 2020) and to the accumulation of microplastics to other aquatic ecosystems (dos reis et al., 2021; he et al., 2020). another problem that was pointed out was the possible pollution by heavy metals, considering that in the studied region there is an ore extraction process, and that mercury, the main element used for the separation of gold in its extraction process, presents high toxicity (arrifano et al., 2021; beckers & rinklebe, 2017). this contamination affects the population in a contradictory way, while mineral extraction is a source of income. fish are at the top of the food chain of the populations living in the amazon region, making these populations the most exposed to mercury contamination in the world (pestana et al., 2022; silva filho et al., 2021; passos et al., 2008). at school, one of the main challenges with the gold extraction process is truancy since students help their parents and family in these processes. thus, planetary health education needs to be associated with life, especially in a context that is still largely forgotten, such as rural communities and rural schools. in the riverside context, there is a scenario of great inequity. thus, it becomes a priority for government officials and parliamentarians to plan more effective social assistance policies for rural populations, with the creation and strengthening of cooperatives for the sale of local products, such as: fish, and local plants such as euterpe oleracea, bertholletia excelsa, musa ssp, theobroma grandiflorum, bactris gasipaes, manihot esculenta, theobroma cacao, and others. since that the riverside communities present productive diversity of native species valuing food from the communities themselves allows for local development, income generation for small farmers and improves the quality of food that is offered to populations (dos santos & torres, 2022). deforestation and the increase in temperature in recent years were highlighted in the speeches of teachers, when they pointed out the harmful effects of deforestation, being something that brings direct connections with other themes that are part of ph. it is important to highlight that climate change at global and regional levels results in extreme events, loss of biodiversity, degradation of habitats, changes in hydrological cycles, increase in greenhouse gases, global warming, economic, social, environmental, and health damages. in addition to these issues, it is worth noting that the forest inhabitants of the amazon, such as the indigenous, riverine people and quilombolas (afro-descendants) are the ones who suffer most directly from conflicts over land and exploitation in these regions since the impacts of changes in ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 67 ecosystems affect mainly the socially disadvantaged classes and rural communities (butler et al., 2019). in this way, it is essential to think that these individuals represent the forest and are the greatest guardians of this biome. discussions about the problems in the amazon region, presented by educators are necessary to further justify the insertion of ph in basic education, especially in those regions where people suffer directly from environmental problems. thus, schools are pointed out as a privileged space to deal with such unique themes, since raising awareness among students is a way of solving the great environmental problems, since these spaces are frequented by children and adolescents with powerful voices to spread the theme, rethink future actions to ensure a sustainable planet. it is believed that science education in riverside communities needs to be based on the elements of the territory, biodiversity, and traditional cultural knowledge, considering the need to unite strategies of ancient knowledge of local populations with scientific knowledge, in addition to thinking about making a transdisciplinary connection between areas, knowledge, and above all, to be part of the actions and practices adopted by educational institutions, such as the environment and school meals. health demands linked to environmental issues the theme “main health demands linked to environmental issues” was pointed out in the categories of waterborne diseases, specifically in times of drought and respiratory illnesses caused by the smoke from deforestation in nearby communities, according to some statements below: sometimes the children get sick with a stomach ache, it must be a water worm because they throw the sewage into the river, in the drought the well water gets bad too and they end up feeling sick (teacher e). we see the pollution of rivers, pollution provoked by mining, we know that they are polluting the river. there is a mining raft near the lake. sometimes, we see children with stomach aches, and diarrhea, 5 to 6 students leaving school with diarrhea. sometimes we wonder whether the food or the water might have caused that. there was a week when there were too many students with diarrhea. then, we could see that the well was dry and had dirty water. so, they started to put chlorine in the water reservoir. some other times, some students went to school with a problem of skin stains. later we discovered that was caused by their jumping into water pounds near septic tanks (teacher f). from my point of view, there are some respiratory problems due to the fires, when students get a lot of flu and colds (teacher b). water-related diseases and respiratory diseases were highlighted in the speeches of teachers from the riverside school. it is essential to align with the themes discussed in the topic about the main environmental catastrophes of the community and school, since contaminated water results from the pollution in the collection sites or water storage, and respiratory diseases come from air pollution. riverside communities in amazonas state have the absence and/or precariousness of basic sanitation, and most of the time, the sanitary sewage is done directly in rivers, lakes, and streams. in addition, water is provided in these communities through artesian wells, which are often close to contaminated areas or even directly from rivers, lakes, and streams. in addition to this, there is still water that receives sewage being used for consumption and food preparation, increasing cases of diseases caused by polluted water consumption. we know that water is essential for life; however, changes in natural ecosystems are bringing negative results to the health of populations. waterborne diseases caused by the presence of microorganisms, parasites, and insect vectors most often affect the most vulnerable people, the children, and the elderly the most affected (prüss-üstun et al., 2008). thinking in the context of the school, we highlight children as the most affected group by diseases resulting from the consumption of contaminated water and food. the main water-related diseases are: diarrheal diseases, malnutrition, intestinal nematode infections, lymphatic filariasis, trachoma, schistosomiasis, malaria, and dengue (prüss-üstun et ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 68 al., 2008). for ataíde et al (2021), intestinal parasites interfere with students' school performance, requiring work on healthy habits and hygiene care. for luo et al. (2022), water pollution in rural communities is still incipiently addressed, being a critical point in developing countries, but water pollution control policies are essential, with a view to improving the beneficial effects, such as ecological improvement, health, well-being and sustainable development, which can also be a way of reducing inequality. for fewtrell et al. (2005), access to safe water and sanitation managed with safety and basic hygiene (wash) is indispensable for the health, well-being, dignity, and socioeconomic development of humanity. thus, one of the strategies to mitigate issues related to wash is awareness campaigns in educational programs with different audiences, including children, mothers, workers, and community members (anthoni et al., 2022). another problem pointed out by the teachers is respiratory diseases, which we highlight the flu, pneumonia, bronchitis, asthma, and rhinitis. all these diseases are mainly caused by external factors, such as air pollution. we highlight here the professors' speech regarding deforestation, in which it is considered one of the main causes of co2 emission into the atmosphere, linked to socioeconomic issues, cuts to agriculture, livestock, and wood extraction, in addition to droughts, forest fires, and degradation of forest areas due to climate change (d'amato et al., 2017). thus, the reality pointed out by the teachers is representative in the general context. in our research, we have riverside populations that, despite having an important role in the maintenance of forests, live within a context of inequality. we emphasize that climate-related changes bring more pronounced effects on populations with lower socioeconomic levels, on women, children, and indigenous communities (cunsolo & ellis, 2018). moreover, other research demonstrated that one of the causes of hospitalizations for respiratory diseases is due to smoke from fires (machado-silva et al., 2020; alves, 2020). plants and the health of the planet: necessary interconnections regarding the “link between the health of the planet and the plants,” the teachers brought the main positive points they could visualize considering the relationship between plants and the planet's health. among the processes, they mentioned breathing, food, and medicine. still, they also said they suffered from major anthropogenic attacks, such as falling trees, deforestation, and fires, as shown below. plants have everything to do with the health of the planet because if the human being continues to destroy nature, cutting trees down, burning and removing trees from the water beds, life on the planet will be difficult because it is the plants that also provide the oxygen that we breathe and hold the water beds (teacher a). there are a lot of plants there; most people treat diseases with plants, it is their resource, being healthier. some plants are also used for food (teacher c). we are in the amazon, right? plants are everything to the planet. when we go down the river, we see the trees already cut down. we can see that when the river changes its course, everything changes. heatwaves might be caused because they cut down the trees, but they don't replace them. the tree is everything on the planet (teacher b). as for the relationship of plants with the health of the planet pointed out by the teachers for reflection, they mentioned positive points, such as the process of breathing, food, and medicines, but also negative notes, due to the attacks that these beings have been suffering with anthropogenic actions such as felling, deforestation, and burning. deforestation in the amazon means changes in natural ecosystems and loss of biodiversity, which are irreversible events (gomes et al., 2010), which compromise the fundamental dynamics of life on earth. thus, we emphasize the need to work hard on the problems and solutions for amazon, considering all existing destruction scenarios. in addition to these issues, the traditional knowledge of amazonian peoples about plants is ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 69 highlighted, which can be widely disseminated to minimize the impacts that natural systems are facing with deforestation and/or fires. the report entitled healing the amazon (watts, 2022) briefly presents the role of riparian peoples in maintaining health in the amazon region; however, it is essential to offer these populations decent conditions for survival. the ngo health in harmony (hih) is an example of partnerships with communities, offering populations health, livelihood, education, and reforestation. school feeding and related challenges about the theme “school lunch”, discussions arose about the main food that is part of the school lunch, mainly ultra-processed foods, such as canned food, sausages, and chocolate. in addition to the necessary remarks for planetary health, such as the need to include regional food, creating a school garden and a cooperative to supply food to schools and generate income for the community was endorsed. i think a place like this should have fish for these children. it's a healthy food, but they don't have it, they send it in cans, a lunch that i don't understand [...], fish, which is good food, is not in the school lunch. they send canned sardines. why not stewed fish? they could do it well and easily. i don't understand these people. they don’t seem to understand that some of the food children eat are the real cause for some infections (teacher i). one of the weakest parts of the school lunch is about vegetables. i was talking to a teacher in the community that i grew up eating regional things that i cannot see here. but i had already worked at a school where there were days of the month when we changed the menu, replacing canned food and sausage for bananas and porridge (teacher b). there should be a complement or incentive for the school to produce, a way to insert the student in the activity, working on several subjects. unfortunately, they don't even have the incentive to build their vegetable garden. the students need more. there should be a cooperative that distributes vegetables and fruits to schools (teacher d). food is a critical topic in planetary health, which involves an approach to the production chain, from seed preparation to the table (fardet & rock, 2020). food production often harms human and planet health, as forests are destroyed, biodiversity loss, increased emission of greenhouse gases, climate change, and various health damages occur. in this sense, cassol & schneider (2015) state that there are other problems that permeate food issues, such as: public health (malnutrition and obesity), environmental problems derived from food production (pollution and contamination with chemicals), and excessive purchases and food waste. from the perspective of educational institutions and planetary health, we thought of discussing what the school offers to riverside students, given that they live in the amazon rainforest, the cradle of incredible biodiversity and regional foods. undoubtedly, the data presented in the interviews were worrisome since ultra-processed foods, such as canned food, sausages, and chocolate drinks, are the most consumed by riverside students, in addition to the absence of regional food in lunch, fruits and vegetables. there are several health problems arising from ultra-processed foods since these foods are high in calories, rich in sugar, sodium, trans-fats, and low in fiber and protein, which with high consumption are associated with chronic non-communicable diseases (ncds). in this context, when talking about food, we are encompassing health, quality of life, and environmental sustainability (monteiro et al., 2019; popkin et al., 2021), in addition to the loss of culinary diversity and regional food traditions (morais sato, 2020). in this sense, we think of the amazon as a forest that is extremely rich in regional products that can be part of students' school lunches, such as euterpe oleracea, bertholletia excelsa, musa ssp, theobroma grandiflorum, bactris gasipaes, manihot esculenta, theobroma cacao, and fish, among others. it is worth highlighting the need for public policies to be allied with environmental and population health issues. the food acquisition program (paa) and the national school feeding program (pnae) were created with the purpose of providing healthy, quality, safe food from family farming. law 11,947/2009 brought advances to the pnae, which include the extension to the entire public basic education network and the guarantee that at least ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 70 30% of the transfers from the national fund for the development of education (fnde) are from food products from familiar agriculture. it is worth mentioning that encouraging the advancement of local family farming means helping to combat the misery and poverty of rural populations as well as promoting sustainability and ensuring health. the main justification for the use of ultraprocessed foods in school lunches was due to the lack of energy to preserve food. anyhow, we ask: does this food guarantee nutrition security for students? or yet, are the residents of riverside communities in the amazon region properly assisted with their rights? considering what was discussed in this topic, the riverside population certainly lives in a context of inequity since their fundamental rights provided by the brazilian federal constitution are not guaranteed. the creation of vegetable gardens in schools and a cooperative in the community were two of the alternatives pointed out by the teachers once this was foreseen by the pnae. undoubtedly, such issues are critical in terms of planetary health since the offering of diversified and healthy regional food is a solution to health issues since food plays a key role in this context. the creation of the cooperative will make it possible to offer local food but also to assist community residents, who often seek out illegal mining to support their families. here we reinforce the need for the government to have a resilient look at these necessary issues. in 2021, three recommendations for health policy in brazil regarding planetary health were released in the lancet countdown policy brief brazil. among the recommendations, we highlight the insertion of the planetary health diet, including the diet in school lunches, as well as the use of regional foods based on the biodiversity of brazilian regions. this recommendation benefits human health since the consumption of healthy and diversified food is essential, in addition to contributing to family farming and, consequently, reducing the environmental impacts related to food production in industrialization processes (barros et al., 2021). potential of riverside schools to intervene in environmental problems the last axis is aimed at knowing the “potential of rural schools to intervene in environmental problems”, so the primary category was the need to promote student awareness given that they have little knowledge about these themes and have a significant role to play in preserving their locality. yes, it has great potential! i think that, first of all, information is what counts more. people are somewhat naive here. we could bring more information to students and make them more aware (teacher b). i believe schools are one of the planet's saviors, but it also depends on home working. for example, i have a project to make a vegetable garden at school, so i get there, and i do everything. everyone needs to do something at home, but the students find that difficult. if everyone does a little at school, there will be more demand for work. the school could have help from the government with other resources. i believe there is a chance to improve our planet (teacher e). schools need incentives, so everyone must be aware of the difference they can make by the fact of being from the countryside and knowing that environmental problems cause impacts that affect everybody’s lives, even because they know a lot about plants and so many local things (teacher i). after these results, it is essential to raise discussions about the need for the insertion of ph in primary schools at all levels of education. by doing this, ph will provide opportunities for everyone to understand the urgency of minimizing environmental impacts and seeing the planet earth as our home, in addition to considering the human being as part of the planet (guzmán et al., 2021). in this context, the codified themes from the perceptions of schoolteachers pointed out the main environmental problems of the school and riverside community in the amazonas state. thus, it is crucial that schools must address these themes in the curriculum in a responsible and resilient way with teaching strategies that enable a connection between the triad: education, health, and environment. ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 71 given all the approaches and contexts of this paper, the schools were pointed out by the teachers as potential spaces for the insertion and discussion of themes that involve planetary health. in fact, planetary health education needs to be part of the documents that guide education at a global level but based on knowledge of the region itself. to advance planetary issues, it is indisputable to think that children and young people need to be part of this context of change, as cited in the são paulo declaration on planetary health (2021), which pointed to the school and all those involved in the educational sector with a fundamental role to protect and minimize the impacts that humanity is causing on the planet and consequently on our health. furthermore, excluding this public means delaying the global process in combating the great climate crisis, since what is often observed is an education with a curriculum disconnected from the issues that link human health and environmental health, not teaching skills that allow an efficient defense of environmental issues (arora et al., 2022). in the case of the amazon region, it is essential to combine all the anthropogenic issues that are happening with solutions so that together we can create resilient human beings capable of intervening and changing this context that has only worsened in recent years. furthermore, in educational institutions, there are children and young people who represent the future of the planet, and it is essential to enable minds that think of the planet as a home. the awareness of students is fundamental, especially in rural schools, with students who have little knowledge about certain subjects often throwing garbage in the river due to a lack of knowledge about the decomposition time, the harm to the environment, and health. thus, it is necessary for professionals from all areas of activity to enable transdisciplinary dialogues to address issues such as these. final considerations after the data presented in this paper with teachers from a riverside school in the brazilian amazon region, we think about the representativeness in the global and local context, considering that the amazon has an indispensable role in the future of the planet and humanity, being essential to reflect the various environmental issues that were presented in the speeches of the interviewed teachers. the amazon biome is at a critical point in which everyone needs to think and reflect on the existing interconnections for the mitigation and adaptation to climate change that has several catastrophic effects on humanity. all events related to disturbances to natural environments need to be known in depth and solved to avoid a greater tragedy. in this context, the interviewed teachers brought to light the main environmental disasters in the riverine scenario of the amazon region. the experience of primary school teachers in rural amazonia is a rich source for the creation of teaching materials on ph for students, considering the inclusion of ph themes in the formative trajectory of children and adolescents in the basic education curriculum. the analysis in the school context allowed us to think about how urgent and necessary an education on planetary health is, especially in a scenario like the amazonian region, so rich, essential and suffers deep anthropogenic attacks. it is worth noting that planetary health, in terms of the area of study, is still very incipient, especially in the context of education. however, it is these educational spaces that need to be gateways to relevant discussions that contribute to solid and comprehensive training in issues involving the health of the planet and the health of populations. yet, we consider that these spaces are potential for disseminating issues that can change the way of thinking and acting, allowing children and adolescents to be resilient and able to fight for such an urgent cause that compromises their and future generations. yet, there is a need for planetary health education to be part of the curriculum, with a decolonial perspective, so that governments have a look at everyone, especially residents of traditional communities and rural schools. acknowledgement the authors acknowledge and thank the federal university of rio grande do sul (ufrgs), federal university of amazons (ufam), amazonas state foundation for research support (fapeam), ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 72 development, economy, science, technology, and innovation secretariat (sedecti) and planetary health ambassador program 2022. references alves, l. (2020). amazon fires coincide with increased respiratory illnesses in indigenous populations. the lancet respiratory medicine, 8(11), e84. anthonj, c., setty, k., ferrero, g., poague, k., yaya, a. m. a., augustijn, e. w., & marsh, a. j. (2022). do health risk perceptions motivate waterand health-related behaviour? a systematic literature review. science of the total environment, 152902. arora, r., spikes, e. t., waxman-lee, c. f., & arora, r. (2022). platforming youth voices in planetary health leadership and advocacy: an untapped reservoir for changemaking. lancet planetary health, 6(2), e78-e80. arrifano, gdp, augusto-oliveira, m., souza-monteiro, jr, macchi, bdm, lima, rr, suñol, c., ... & crespo-lopez, me (2021). revisitando os papéis astrocíticos na intoxicação por metilmercúrio. molecular neurobiology, 58 (9), 4293-4308. ataíde, a. r., acioli, a. n. s., de araújo pantoja, t. m., & lima, r. a. (2021). de pilatos a educação profilática humanizada: o “vamos lavar as mãos” na escola. revista ensino de ciências e humanidadescidadania, diversidade e bem estar-rech, 5(2, jul-dez), 243-260. barros, e., camargo, ts., santiago, r., stein, a., vianna, d., floss, m, & saldiva, p, (2021). policy brief for brazil. lancet countdown. disponível em: https://www.lancetcountdown.org/resourc es/ bardin l. (2009). análise de conteúdo. lisboa: editora áries 70, 2009. beckers, f., & rinklebe, j. (2017). cycling of mercury in the environment: sources, fate, and human health implications: a review. critical reviews in environmental science and technology, 47(9), 693-794. bell, j. e., brown, c. l., conlon, k., herring, s., kunkel, k. e., lawrimore, j., ... & uejio, c. (2018). changes in extreme events and the potential impacts on human health. journal of the air & waste management association, 68(4), 265-287. brasil. lei no 11.346, de 15 de setembro de 2006. cria o sistema nacional de segurança alimentar e nutricional-sisan com vistas em assegurar o direito humano à alimentação adequada e dá outras providências. diário oficial da união, 2006. brasil. resolução/cd/fnde no 6, de 08 de maio de 2020. dispõe sobre o atendimento da alimentação escolar aos alunos da educação básica no âmbito do programa nacional de alimentação escolar – pnae. diário oficial da união, 2020. butler, c. d., higgs, k., & mcfarlane, r. a. (2019). environmental health, planetary boundaries and limits to growth. encyclopedia of environmental health, 533. butt, e. w., conibear, l., knote, c., & spracklen, d. v. (2021). large air quality and public health impacts due to amazonian deforestation fires in 2019. geohealth, 5(7), e2021gh000429. cardano, m (2017). manual de pesquisa qualitativa. a contribuição da teoria da argumentação. tradução: elisabeth da rosa conill. petrópolis, rio de janeiro: vozes. cassol, a., & schneider, s. (2015). produção e consumo de alimentos: novas redes e atores. lua nova: revista de cultura e política, 143180. ceballos, g., ehrlich, p. r., & raven, p. h. (2020). vertebrates on the brink as indicators of biological annihilation and the sixth mass extinction. proceedings of the national academy of sciences, 117(24), 13596-13602. crutzen, p. j. (2016). geology of mankind. in paul j. crutzen: a pioneer on atmospheric chemistry and climate change in the anthropocene (pp. 211-215). springer, cham. cunsolo, a, & wllis, nr. (2018). ecological grief as a mental health response to climate changerelated loss. natura climate change, 8(1), 275-281. d’amato, g., vitale, c., rosario, n., neto, h. j. c., chong-silva, d. c., mendonça, f., ... & d’amato, m. (2017). climate change, allergy and asthma, and the role of tropical forests. ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 73 world allergy organization journal, 10(1), 18. de morais sato, p., couto, m. t., wells, j., cardoso, m. a., devakumar, d., & scagliusi, f. b. (2020). mothers' food choices and consumption of ultra-processed foods in the brazilian amazon: a grounded theory study. appetite, 148, 104602. de wit, f., & mourato, j. (2022). governing the diverse forest: polycentric climate governance in the amazon. world development, 157, 105955. delgado, r. c., de santana, r. o., gelsleichter, y. a., & pereira, m. g. (2022). degradation of south american biomes: what to expect for the future?. environmental impact assessment review, 96, 106815. doria, c. r. d. c., athayde, s., marques, e. e., lima, m. a. l., dutka-gianelli, j., ruffino, m. l., ... & isaac, v. n. (2018). the invisibility of fisheries in the process of hydropower development across the amazon. ambio, 47(4), 453-465. dos reis, m., de alencastro graça, p. m. l., yanai, a. m., ramos, c. j. p., & fearnside, p. m. (2021). forest fires and deforestation in the central amazon: effects of landscape and climate on spatial and temporal dynamics. journal of environmental management, 288, 112310. dos santos, t. t. b., & torres, r. l. (2022). o programa nacional de alimentação escolar e a importância do fortalecimento da agricultura familiar para a promoção da soberania e segurança alimentar e nutricional no brasil. retratos de assentamentos, 25(1), 41-68. fardet, a., & rock, e. (2020). ultra-processed foods and food system sustainability: what are the links?. sustainability, 12(15), 6280. fearnside, p. m. (2008). mudanças climáticas globais e a floresta amazônica. a biologia e as mudanças climáticas no brasil. rima editora, são carlos. 316p, 131-150. fewtrell, l., kaufmann, r. b., kay, d., enanoria, w., haller, l., & colford jr, j. m. (2005). water, sanitation, and hygiene interventions to reduce diarrhoea in less developed countries: a systematic review and metaanalysis. the lancet infectious diseases, 5(1), 42-52. floss, m. & barros, ef. (2019). planetary health: a call for action of family doctors from around the world. revista brasileira de medicina de família e comunidade, 14(41), 1992. gomes, j. m., carvalho, j. o. p. d., silva, m. g. d., nobre, d. n. v., taffarel, m., ferreira, j. e. r., & santos, r. n. j. (2010). sobrevivência de espécies arbóreas plantadas em clareiras causadas pela colheita de madeira em uma floresta de terra firme no município de paragominas na amazônia brasileira. acta amazônica, 40, 171-178. guzmán, c. a. f., aguirre, a. a., astle, b., barros, e., bayles, b., chimbari, m., ... & zylstra, m. (2021). a framework to guide planetary health education. the lancet planetary health, 5(5), e253-e255. he, b., wijesiri, b., ayoko, ga, egodawatta, p., rintoul, l., & goonetilleke, a. (2020). fatores influentes na ocorrência de microplásticos em sedimentos fluviais. ciência do meio ambiente total, 738 , 139901. hope, m. (2019). the brazilian development agenda driving amazon devastation. the lancet planetary health, 3(10), e409-e411. imazon, instituto do homem e meio ambiente da amazônia. (2022, janeiro 17). desmatamento na amazônia cresce 29% em 2021 e é o maior dos últimos 10 anos. imazon.com. acessado em agosto, 2022, em https://imazon.org.br/imprensa/desmatam ento-na-amazonia-cresce-29-em-2021-e-eo-maior-dos-ultimos-10-anos/ iyer, h. s., deville, n. v., stoddard, o., cole, j., myers, s. s., li, h., ... & golden, c. d. (2021). sustaining planetary health through systems thinking: public health's critical role. ssmpopulation health, 15, 100844. lavers, j. l., bond, a. l., & rolsky, c. (2022). far from a distraction: plastic pollution and the planetary emergency. biological conservation, 272, 109655. luo, y., wu, j., & xu, y. (2022). can self-governance tackle the water commons? causal evidence of the effect of rural water pollution treatment on farmers' health in china. ecological economics, 198, 107471. machado-silva, f., libonati, r., de lima, t. f. m., peixoto, r. b., de almeida franca, j. r., magalhães, m. d. a. f. m., ... & dacamara, c. ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 74 c. (2020). drought and fires influence the respiratory diseases hospitalizations in the amazon. ecological indicators, 109, 105817. mittermeier, r. a., mittermeier, c. g., brooks, t. m., pilgrim, j. d., konstant, w. r., da fonseca, g. a., & kormos, c. (2003). wilderness and biodiversity conservation. proceedings of the national academy of sciences, 100(18), 10309-10313. minayo, m. c. s. (2008). o desafio do conhecimento. 11 ed. são paulo: hucitec. monteiro, c. a., cannon, g., levy, r. b., moubarac, j. c., louzada, m. l., rauber, f., ... & jaime, p. c. (2019). ultra-processed foods: what they are and how to identify them. public health nutrition, 22(5), 936-941. morisetti, n. & blackstock, j. j. (2017). impacto of a changing climate on global stabilitv, wellbeing, and planetary health. the lancet, 1(1), e10-11. myers, ss., pivor, ji. & saraiva, am, (2021). the são paulo declaration on planetary health. the lancet, 398(10308), p1299. myers, s. s. (2017). planetary health: protecting human health on a rapidly changing planet. the lancet, 390(10114), 2860-2868. nations, u. (2015). transforming our world: the 2030 agenda for sustainable development. new york: united nations, department of economic and social affairs. passos, c. j. s., da silva, d. s., lemire, m., fillion, m., guimaraes, j. r. d., lucotte, m., & mergler, d. (2008). daily mercury intake in fish-eating populations in the brazilian amazon. journal of exposure science & environmental epidemiology, 18(1), 76-87. pestana, i. a., de rezende, c. e., almeida, r., de lacerda, l. d., & bastos, w. r. (2022). let's talk about mercury contamination in the amazon (again): the case of the floating gold miners’ village on the madeira river. the extractive industries and society, 101122. popkin, b. m., barquera, s., corvalan, c., hofman, k. j., monteiro, c., ng, s. w., ... & taillie, l. s. (2021). towards unified and impactful policies to reduce ultra-processed food consumption and promote healthier eating. the lancet diabetes & endocrinology, 9(7), 462-470. pruss-ustun, a., & world health organization. (2008). safer water, better health: costs, benefits and sustainability of interventions to protect and promote health. world health organization. rockström, j., steffen, w., noone, k., persson, å., chapin, fs, lambin, ef & foley, ja (2009). um espaço operacional seguro para a humanidade. nature, 461 (7263), 472-475. sampaio, g., borma, l. s., cardoso, m., alves, l. m., randow, c. v., rodriguez, d. a., ... & alexandre, f. f. (2019). assessing the possible impacts of a 4 c or higher warming in amazonia. in climate change risks in brazil (pp. 201-218). springer, cham. silva filho, e. c., loureiro, s. m. d. s., souza filho, c. f. m. d., & bertaso, j. m. (2021). impactos socioambientais da mineração sobre povos indígenas e comunidades ribeirinhas na amazônia (v. 1). smith, l. t., aragao, l. e., sabel, c. e., & nakaya, t. (2014). drought impacts on children's respiratory health in the brazilian amazon. scientific reports, 4(1), 1-8. steffen, w., richardson, k., rockström, j., cornell, s. e., fetzer, i., bennett, e. m., ... & sörlin, s. (2015). planetary boundaries: guiding human development on a changing planet. science, 347(6223), 1259855. van emmerik, t., & schwarz, a. (2020). plastic debris in rivers. wiley interdisciplinary reviews: water, 7(1), e1398. waters, c. n., zalasiewicz, j., summerhayes, c., barnosky, a. d., poirier, c., gałuszka, a., ... & wolfe, a. p. (2016). the anthropocene is functionally and stratigraphically distinct from the holocene. science, 351(6269), aad2622. watts, j. (2022). healing the amazon. the lancet, 399(10337), 1767-1768. whitmee, s., haines, a., beyrer, c., boltz, f., capon, a. g., de souza dias, b. f., ... & yach, d. (2015). safeguarding human health in the anthropocene epoch: report of the rockefeller foundation–lancet commission on planetary health. the lancet, 386(10007), 1973-2028. yalwaji, b., john-nwagwu, h. o., & sogbanmu, t. o. (2022). plastic pollution in the environment in nigeria: a rapid systematic review of the ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 75 sources, distribution, research gaps, and policy needs. scientific african, e01220. zaman, k. (2022). the environmental cost of deforestation in brazil’s amazon rainforest: controlling biocapacity deficit and renewable wastes for conserving forest resources. forest ecology and management, 504, 119854. ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 76 figure 1. location of the study area ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 77 table 1. guiding questions for the semi-structured interview questions 1 what do you, as a teacher, think about the health of the concerning the various existing environmental catastrophes? 2 what are the main health demands that are connected to environmental issues in the community/school? 3 in your opinion, what is the connection between the health of the planet and plants? 4 about the school lunch of rural education, which foods are usually part of the lunch? and what is your opinion about these foods? 5 in your opinion, do rural schools have the potential to intervene in environmental issues that involve human health and the health of the planet? ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 78 table 2. codifications created from teachers’ interviews codifications main codified themes i environmental disasters and planetary health environmental problems public policies ii health demands linked to environmental issues waterborne diseases respiratory diseases iii linking the health of the planet and plants breathing agriculture logging reforestation iv school lunch ultra-processed foods creation of a cooperative v intervention potential of rural schools awareness ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 79 figure 2. word cloud by n-vivo software according to data collected from interviewed teachers ihtp, 2(3), si: 61-80, 2022 cc by-nc-nd 4.0 issn 2563-9269 80 figure 3. positive and negative interactions on planetary health in the amazon region ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 139 an exploration of francophone and francophile men’s representation of prostate cancer: an ethnographic study margareth santos zanchetta1, marguerite cognet 2, françois desgrandchamps3, mary rachel lam-kin-teng4, marie elisabeth dumitriu1,5 1daphne cockwell school of nursing, toronto metropolitan university, toronto, canada; 2unité de recherche migrations et societés, université paris diderot, paris, france; 3department of urology, hôpital saint louis, université paris diderot, paris france; 4srt medstaff, toronto, canada; 5centre for addiction and mental health, toronto, canada corresponding author: m. s. zanchetta (mzanchet@ryerson.ca) abstract background. worldwide, men’s health and wellness promotion employ various models and conceptions of masculinity. masculinities are subjectively experienced and influenced by social differences such as race, class, and sexual orientation. largely because it threatens men’s gender identity and sexuality, prostate cancer is a prominent and sensitive health issue. how men think, speak about, and represent prostate cancer is affected by their cultural, social, moral, and religious values and beliefs. methods. based on data from a larger ethnographic study, this article reports on francophone and francophile immigrant men’s experiences and representations of prostate cancer. data were collected from interviews with 19 men in the cities of gonesse and paris, france, using a tool inspired by (core) social representation theory, and submitted to content analysis. results. similar views between the two groups of men suggest that the representation of prostate cancer prevalent in french society held more sway over the men’s attitudes and thoughts than any alternative cultural views from the immigrants’ particular ethnic backgrounds. conclusions. the confirmed view of prostate cancer as a disease with neither a positive nor a negative meaning offered opportunities for the men to re-evaluate their lives and plan their future with realistic expectations. keywords culture; ethnicity; ethnography; france; prostate cancer funding source this work was supported by: union for international cancer control-yamagiwa-yoshida memorial international study grant-japan national committee for uicc and kyowa hakko kogyo co. ltd., japan earned by the first author; as well as toronto metropolitan university work-study program research assistant earned by the fourth author, and faculty of community services, writing week initiative-toronto metropolitan university, toronto, canada. background worldwide, men’s health and wellness promotion employ various models (white, 2006) and conceptions of masculinity (gough, 2013). the way each man lives his own masculinity implies a multiplicity of masculinities as subjectively experienced (connell & messerschmidt, 2005) and influenced by social differences such as race, class, and sexual orientation. largely because it threatens ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 140 men’s gender identity and sexuality, prostate cancer (pc) is a prominent and sensitive health issue. how men think, speak about, and represent pc is affected by their cultural, social, moral, and religious values and beliefs (broom, 2004; zanchetta et al., 2007a). immigrant men’s increasing international mobility makes ethno-cultural differences an important factor in dealing with pc issues once the men are in a host society. like other european countries (jemal et al., 2014), france’s rate of pc is high. in 2011 there were 53,913 new cases, 8,893 estimated deaths, and a total prevalence of 508,699 cases (institut national du cancer, 2016; 2015). a france-wide survey (inserm & inca, 2014) revealed that a considerable proportion of 1,449 men aged 50 or more, who were at least two years post-treatment for pc, reported signs of difficulties: 52.3 percent had reduced sexual relations and 45.3 percent had lowered libido (undisclosed to their healthcare professionals); 26.3 percent reported other post-treatment issues. only 13.7 percent contacted a patient association over relational or social issues and 3.1 percent consulted a social worker (inserm & inca, 2014). despite the high incidence of pc, there has been little investigation of men’s ideas, thoughts, and representations of it within a french multicultural context. for this study, we explored representations of pc with two samples of men living in france: francophones and francophiles. we defined men whose first language was french, whether they were born in france or were immigrants, as francophone while immigrant men with a different first language were francophile, that is, non-native speakers of french (organisation internationale de la francophonie [oif], 2014). most francophone immigrants to france come from african saharan countries and most francophile immigrants come from other european countries (portugal, spain, italy, united kingdom, germany, and poland) or asian countries (vietnam and china) (institut national de la statistique et des études économiques, 2010). native french speakers are distributed worldwide: 53 percent in the african continent, 37 percent in europe (25 percent of these in a non-francophone country), 8 percent in north america, and 2 percent in asia (oif, 2014). countries that attract francophone migrants are interested in international migration and long-term settlement. as a result of this diversity within french-rooted culture, many host countries may face social and cultural integration challenges with francophone migrants, including in health services. we were interested in how cultural views of health and masculinity affect male immigrants’ perceptions of pc. do men from a different ethno-cultural background and with a different first language acquire and share different ideas about pc than survivors who are born in france or native french speakers? given men’s reticence to speak about cancer, particularly pc with its links to sexual impotence and masculinity, we considered it important to encourage men to talk about their experience and express their views. vos (2015) argues that healthcare professionals should understand how their cancer patients experience their illness, and that this requires decoding the embedded meaning in all words patients use to reveal their understanding, ideas, feelings, fears, and hopes when living with cancer. in patients’ discourse, each word has a hidden meaning that embodies a notion of health-related representations and feelings might be expressed in several different forms (le moigne, 2010). in the roller-coaster of emotions that arise from the cancer diagnosis to rehabilitation, patients are expected to become active partners in their care (henselmans de haes, & smets, 2013) and undertake demanding selfmanagement of treatment-related issues (appleton et al., 2015). this requires good communication so that patients feel comfortable disclosing issues, concerns, and needs (frenkel et al., 2016). such disclosures can also help researchers to develop greater understanding of the connections between men’s practices and illness representations, and advance gender studies (welzer-lang, 2011). especially for immigrants, open communication also contributes to cultural immersion and the fruitful exchange of ideas (noels, kil, & fang, 2014). most recent systematic reviews of qualitative studies (spendelow et al., 2018) that explore the multiple impacts of pc revealed that it threatens masculine identity independent of men’s age, but especially when their virility and an active sexual life are salient (chambers et al., 2014). dealing with these vulnerabilities requires men to adapt and restore or ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 141 re-create their male identity, develop their mental resilience, and normalize sexual impotence. to promote men’s health in cases of pc, it is imperative to understand that an individual’s sense of masculinity is an expression of gender (robertson, 2007) shaped by his cultural affiliation. this includes the language he uses in daily social interactions, to receive social support, and to develop his level of health literacy and his ability to use health services. gender influences one’s choices and implementation of cultural practices at all stages of life (buscatto, 2014). improved understanding of how pc affects a patient’s sense of masculinity within a cultural context will assist healthcare professionals to provide genderand culturally sensitive treatment and care that promote the health and wellness of all men. although this study was set in france, the issues are relevant to other countries that host french-speaking men. this paper is based on analysis of a subset of data from a large ethnographic study. previous findings have been published on aspects of lived representations of pc and quality of life among patients/survivors as bloggers (zanchetta et al., 2016), and on clinical representations of pc in the french media (zanchetta et al., 2018). this paper extends the analysis to focus on the experiences and representations of pc by francophone and francophile men living in the cities of gonesse and paris, france—two groups that vary in their socioeconomic and cultural profiles. the study design and data analysis involved a cross-cultural validation of a french-language version of a psychological, qualitative projective tool (zanchetta et al., 2005; zanchetta et al., 2007a), but an in-depth discussion of the validation process is beyond the scope of this paper. theoretical framework social representation theory, and particularly the core (versus peripheral) elements, (flament, 1994; abric, 2001) provided a theoretical framework for this study. a social representation is a way of knowing and a form of social thinking, both of which include common sense. it is related to communication, understanding lived experiences, and mastering one’s cultural, social, ideological, and material environment (jodelet, 1999). according to abric (2001), the core of a social representation is stable regardless of new experiences or knowledge, but it can generate or change the meaning and the value of a given social representation. the core of a representation organizes the links between elements of a social representation, which may be modified by one’s interpretation of new experiences and learning within the social world. the elements that make up a social representation also depend on the interface between the core concepts and the reality the social representation originates from (abric, 2001). we were interested in pc’s symbolic value, associations, and how the two groups of men refuted ideas about it through their situated knowledge. we aimed to elicit men’s practices and thoughts about pc that were consonant with their idea of its core element of the representation within their cultural group. such practices and thoughts revealed how they perceived the cancer’s impact on their quality of life (le moigne, 2010), thus grounding a transcultural representation of pc. a representation that crosses boundaries of ethno-cultural groups while preserving its core element. specifically, we aimed to (a) explore a transcultural representation of pc among francophone and francophile men; (b) identify the men’s thoughts and feelings about the disease experience; (c) analyze any similarities between the groups, and (d) delineate a transcultural representation of pc within a french cultural context. two research questions guided this study: (a) which ideas regarding pc are similar among men from different ethno-cultural backgrounds, and emerge at various points or phases of their illness, namely, learning of the medical diagnosis, telling their family about it, facing moments of frustration, and reassessing life priorities? and (b) to what extent do similarities exist between these groups of ideas regarding pc that would suggest a core transcultural representation of pc within a french cultural context? methods we applied an ethnographic approach to describe and interpret the patterns of values, behaviours, beliefs, and language of a cultural group (creswell & creswell, 2018). the study population was men older than 40 years who were enrolled as patients in the ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 142 department of urology at two study sites (hôpital saint louis-paris and centre hospitalier emmanuel raingonesse) and underwent medical treatment for pc and were in distinct phases of their treatment: initial, ongoing, and clinical post-treatment follow-up. sampling and recruitment strategies using multiple cases for contrast-saturation and nonprobability, we used purposeful sampling to identify participants and to solicit in-depth, rich data through face-to-face interviews (grove burns, & gray, 2013). in terms of quota sampling (wood & ross-kerr, 2011) we achieved the expected minimal quota of 10 participants in the francophone group (final sample, n=15). it is achieved because pires (1997) recommends having a minimum of three selected participants whose responses are contrasted for each main variable. the sole main variable in this study was the men’s linguistic status, which was assumed to be a key factor in their access to information and services, thus shaping their experiences, ideas, and knowledge of pc. therefore, the necessary minimal was 6 (francophone and francophile) participants. the group of four francophile participants was smaller, but still sufficient for comparative analysis, in conformity with the criteria for internal comparison among participants’ prospective empirical traits (pires, 1997). using the medical archives of both hospitals, the first author pre-selected prospective participants with the assistance of medical and administrative staff, identifying them mainly by their backgrounds as french-born or immigrant, with a residence located near the paris metropolitan area, and by linguistic group (i.e., native, and non-native speakers of french). we mailed study invitation letters to 154 prospective participants (may to june 2013). the participation rate was 9 percent. the first author collected data during july and august 2013. the inclusion criteria were men who: (a) had received a diagnosis of localized pc; (b) had effective oral communication in french; and (c) were born in france or had immigrated to france more than three years prior. the exclusion criteria were: (a) men who had received a diagnosis of metastatic pc; (b) reports of hearing, vocal, or visual impairment (c) reports of pain and use of pain medication; and (d) reports of drug treatment for psychosis, depression, or any other major mental conditions. since we could not access medical documentation, we did not verify clinical variables and instead relied on participants’ self-reports. this led to the inclusion of one participant with a metastatic condition. no criteria were used by the first and the second authors to invite volunteers to the verification-of-findings session. instrumentation we used a questionnaire that was inspired by the core of social representation theory and created for a previous study (zanchetta et al., 2007a). this questionnaire applies techniques of word association, sentence completion, and the thematic apperception test (picture interpretation) (lilienfeld wood, & garb, 2000). details about the original questionnaire in english are published elsewhere (zanchetta et al., 2007a). the questionnaire ends with a diagram of a tree, selected to evoke ideas of rigidity, strength, and endurance as suggested by the scientific literature on masculinity (courtenay, 2003; arber, 2004), and to elicit from respondents a synthesis image of pc. such image materializes the most expressive ideas that compose the constructed pc representation. respondents were asked to use the metaphor of a tree as an organizing image of the elements of pc, as follows: * the roots—associated with pc, the hidden part of the tree. * the trunk—associated with the meaning of the diagnosis. * the branches—associated with the major events of the clinical trajectory. * the leaves—associated with identification of synthesis/ideas. the original questionnaire was translated from english to french and revised by a french-born male editor (who lives in toronto, canada, but is originally from paris) to ensure that colloquial words commonly used in paris and gonesse were incorporated. the letter of introduction for prospective participants and the consent forms were revised by the same editor for plain language to accommodate individuals with limited written french language skills. these ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 143 documents were also reviewed for language appropriateness by psychologists in paris who are affiliated with a helpline sponsored by the league française contre le cancer and are familiar with how patients typically speak of pc. for examples of questions, see table 1. field entry and data collection the fieldwork included eight visits to four patients during their preor post-prostatectomy hospital stay. two of the men had clinical-related complications. men were asked to share their thoughts at various stages of treatment. we interviewed 17 nonhospitalized men who had undergone medical treatment, and two hospitalized men who completed a portion of the questionnaire. in these brief meetings and interviews, we gathered information to identify significant experiences regarding changes in the men’s lives caused by pc, specifically, their selfawareness of past health behaviours, their future plans and expectations, their sense of masculinity, and sociocultural representations. the interviews and conversations were audio-recorded. the fourth author transcribed verbatim and coded with support of atlas ti 7.0. data analysis we used the content analysis method (bardin, 1997) on the data to identify the tendency of thoughts and feelings (which the first and fourth authors coded as positive, neutral, and negative), as is recommended for studies exploring social representations (guimelli, 2001), to categorize the concepts expressed and to explore their semantic proximity, units of meaning, internal structure, and dichotomy. regarding the data gathered related to the tree diagram and other open-ended questions that were designed to identify key features of the respondents’ views of pc representation, both analysts contrasted clusters of thoughts and grouped them into conceptual categories according to their valence (positive, neutral, and negative). the combination of both methods allowed us to assess the internal coherence of the findings, and to extend our understanding of the men’s views and ideas. during analysis of the taped data, the first and fourth authors listened to the audio files several times and the first author recalled her impressions of the participants, including the intonation of their voices and facial expressions, to ensure consistency in attributing the valence of meanings. through weekly dialogue, both analysts (in person and virtual contact) reached an interpretative consensus that was corroborated by the second author resulting in a summary diagram to finalize and verify our interpretations. verifying the findings the verification session was conducted in paris, may 2015 by the first author with five participant volunteers who constituted a group of natural experts -understood as those who live the phenomenon under investigation (sandelowski, 1998). we used their comments to assess how meaningful our interpretations of the findings were (miles et al., 2020). this procedure served as a check by the participants and ensured validity in terms of grounded knowledge (creswell & creswell, 2018). the study’s validity was strengthened by inviting the natural experts to discuss the interpretations and express any new ideas (altheide & johnson, 1998). verifiers were asked to freely express their thoughts about the diagram synthesis they reviewed. the audio-file of this session was reviewed by the first author, who also discussed the results with the second and third authors to refine final interpretations. ethical considerations this study was reviewed and approved by comité d’évaluation éthique de l’institut national de la santé et de la recherche médicale (ceei-irb inserm-france; avis #12-083) and ryerson university research ethics board (canada; reb 2013-107). participants provided signed informed consent, copies of which were added to their hospital files in france and offered for their personal files. results the findings are based on the data gathered from: (a) observation and conversations with four francophone men who were hospitalized during, prior to, or after a prostatectomy, along with two francophone men with serious clinical conditions who were receiving palliative care, and (b) interviews ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 144 with 15 francophone and four francophile nonhospitalized men. sociodemographic information and particulars regarding social relations and health issues were obtained from the non-hospitalized men only (tables 2 and 3). among the francophone participants, 47 percent were between 71 and 80 years old; 27 percent were 61 to 70 years old; and 20 percent were 51 to 60. many of the francophone men had mastered two languages (47%). two of the four francophile participants were in their sixties and two were in their seventies. they were multilingual and most spoke three languages (75%). regarding their health, 84 percent of all participants reported a good or superior status, and 84 percent of them had undergone a prostatectomy. the data include the men’s responses to the structured interview and the dialogue established with participants while they were filling in the questionnaire. to keep the essence of their comments and experience of pc, their original words and short phrases are presented here, translated in english. not all participants completed the full questionnaire; most of the missing data involved the tree graphic used to recall their thoughts and feelings at specific moments during treatment. pseudonyms are used to identify participants and to maintain their anonymity (table 2, table 3). pc-related ideas that francophone and francophile men expressed despite reports of a generalized silence among men about pc, even cases among their relatives, acquaintances, and friends, all the participants’ accounts about pc were comprehensive and addressed more than their sexual life. the exercise of filling in the questionnaire provoked reflections and conversations about men’s lack of knowledge about what to expect throughout the course of treatment and related issues of loss or benefit, but the men barely acknowledged the cultural context of their lived experiences with pc. religion-related narratives were superficial, which suggests religion may not be a highly significant factor in men’s experiences, although spirituality was reported to be a main source of comfort. participants expressed their uneasiness in relation to two confounding concepts: masculinity and virility. the questionnaire progressively explored current and past ideas about pc at different points, with emphasis on the current rehabilitation phase. the participants were asked to list up to six impacts of pc on their current life. negative words were used more frequently (n=34; 51%) than those with a positive meaning (n=18; 27%), or a neutral meaning (n=14; 21%). examples of words or phrases used and their classifications are: negative — mutilation, powerlessness, stressful, fragility, and take my life away; positive — rebirth, more mature, less obsessed by death, more compassion and humanity, better lifestyle and no complaints, and it could be worse; and neutral — normal life, follow-up the evolution of the disease, erection, sexuality, and care. when participants were asked to select from a list of 15 words those closest to their thoughts and feelings regarding pc, they most often chose surprise, cure, and trust (n=12), combat and strength (n=10), and fear and energy (n=8). while the secondary effects of medical treatments were similar for both samples of participants, the 14 men who had spouses referred to some sort of renegotiation of roles and performance and explained this mainly in terms of age-related functional changes. an equally important issue for the men was urinary incontinence, which affected their self-esteem by causing embarrassment over its visibility (caused by leaking and odours). despite their compromised sexual life, participants’ sense of masculinity remained intact. the upcoming sections present original accounts from participants that were freely translated from french to english language by the first and fourth authors. accounts from francophone men the 15 francophone men differed in birthplaces (table 2) and their stories of having pc included references to being uninformed, avoiding discussion of the topic, and facing uncertainties. in the words of a man, we’ll call benoit, “it is a discussed topic, but i don’t know what french people think about it. i don’t know why. i have a house in bretagne and my neighbour has prostate cancer, but why don’t we talk about it?” ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 145 even though many of the men had a postsecondary education (only the tunisian immigrant had little schooling), and had some awareness of pc’s prevalence, they were not knowledgeable about it, nor prepared to deal with having the disease: “at that time, there was an increase of prostate cancer in guadeloupe. due to the pesticides, they use in banana plantation — it goes over the bananas, in the soil, in salads, potatoes … and then everyone has diabetes, the prostate, but not in my family.” (jeanmarie) “so, i read about it … i love to read — one wrote that it was a cancer with a slow evolution if we do not touch it. we should not tickle the dragon.” (jean) overall, the francophone group seemed to react well to the uncertainties, difficulties, and unpredictable events of having pc. however, some of their responses indicated that their feelings vacillated over the demands of adapting to their new health status. some responses suggested a pattern in that they acknowledged the challenging emotional impact but were determined to react and behave as good patients who can take care of themselves and efficiently self-manage their pc-related issues. “i talked to almost 20 guys. i said to them: ‘i have a prostate cancer.’ it was like i said, “i have a throat problem.” to me it was like i had a disease like any other. i think that someday when they recall this, they will be less stressed out … if we have a positive discourse, they will be positive.” (mustapha) the francophone men tended to have negative thoughts and feelings when they were first diagnosed, but these were progressively replaced by more positive reactions once their post-treatment follow-up was initiated. although they discussed loss of virility, it was a controversial subject. some men viewed it as a major threat to masculinity in the context of french culture. one man criticized this common social perception as faulty and limiting: “it’s terrible, but the french man is a macho … from the moment one touches a part of it [masculinity], that’s a catastrophe … yes, it’s agreeable but it’s not all in life!” (mustapha) another man explained how in congolese culture male virility is associated with the socio-cultural role of “giving life.” even though this man is a priest (and therefore celibate), he still felt that losing his virility affected his sense of manliness. this is not surprising, given how one medical professional spoke to him about the effects of surgery: “for us [congolese people], it is linked to aging. in my country, i barely listened [to the discussion] about the prostate. it’s now in the modern times that it develops … dr. x who works at a kenyan medical research centre said, ‘we should not operate on you, otherwise you will become a zombie … because you will lose your virility’.” (abel) a few men felt that sexual impotence represented the end of their lives (a fatalist response), or that it was an acceptable cost of survival (a resigned response). other men reacted to impotence more positively, seeing it as an excuse to free themselves from sexual duties or expectations (an opportunistic response), or a time to reassess their priorities and their sexual practice (a creative response). the latter two did not feel diminished as men — they were open to exploring the sensual aspects of sexuality. for instance, six of these men expressed curiosity about sensuality and varied sexual practices, such as how to sexually stimulate a woman without penile penetration. it is noteworthy that they had not raised such intimate questions with their physicians and psychotherapists. accounts from francophile men the francophile men were immigrants (table 2) who had lived in france for about 20 years. they expressed predominantly negative thoughts and feelings over the physical, mental, and emotional impacts of their pc, even when they were in an early stage of the disease. when asked to choose words that best matched their ideas and feelings since being diagnosed with pc, the word cure was the top choice. three of the men chose the words surprise, trust, fight, action, strength, and energy, while two chose sadness and fatality, followed by urgency, learning, and help. their selection suggested they had a less positive perspective than the francophone men, ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 146 perhaps because they were less prepared to face pc or viewed it more negatively. only one man chose the word frightening and another one, anger. strong negative reactions might be related to having a limited understanding of their personal medical condition. one man’s comment revealed a cultural pattern that is no longer part of western medical practice but still current in some countries—troubling medical diagnoses are shared with family members but not the elderly patient, who is not given much or any explanation of his diagnosis or treatment: “almost four years that they did chemotherapy to me. i did not know why. they did not tell me that i had prostate cancer, but they did it every week. they said to my family that i had it, but not to me.” (pedro) their lack of knowledge about pc was evident when questioned about media and other informal sources of health information. they denied learning anything about the disease from such sources. they cited their family doctors and cardiologists as the professionals who usually told them about the need for screening by psa testing and digital rectal examination. even when adhering to these regimens, one man reported his efforts to shield himself from the talk of other patients, and to select how and what to learn about his own situation with pc: “it is a quite embarrassing issue … when i went to radiotherapy i avoided contact with other patients because i [didn’t want to hear any] bad information … what did concern me was my problem, how to treat it in an optimistic manner, even if i am in anguish.” (juan) another man said he had received a great deal of information from his urologist, and that this contributed to his positive attitude about having the disease: “after meeting the doctor, who explained everything to me … we talked for three hours! he gave me website addresses for more information to read, and some references in the literature. i did study them, and i made my decision for surgical intervention. i talked to my friends and neighbours because they knew about my uncle’s experience of the disease, and this uncle was my father’s twin.” (franz) yet another man was explicit about accepting his diagnosis and involving his family and friends in making the decision to have medical treatment and face what the future would bring. “i totally accepted the disease … that i had a tumour, and then i talked to my children, my friends, my wife … and after in-depth reflection, because someone told me i should do something … i couldn’t remain with it. we decided that i would do this [the surgery], and i understood the troubles i would have after the surgery.” (ibrahim) table 4 shows the dominant valence of pc-related thoughts and feelings at various points during the trajectory and treatment of their disease for both groups of men. the overall trend was more positive among the francophone men than the francophile men (table 4). lived representations of prostate cancer differences in the men’s ethno-cultural backgrounds, that is, between the francophone and francophile groups, seemed to have little influence on their core of the representation of pc. we asked for men’s responses to the tree graphic and other open-ended questions to elicit their core ideas of pc, and to compile a synthesis view of it, grounded in their experiences. the evocative exercise (using the metaphor of a tree, with its roots, trunk, branches, and leaves) characterized their experiences and feelings at specific moments of their pc trajectory (table 4; zanchetta et al., 2007a). all the responses were assembled (indicated as ideas), analyzed, and classified in three major categories, as either an action, a condition, or a feeling. in phase 1, learning about the medical diagnosis of pc, most of the 40 responses (62.5%) reflected a feeling, and were negative, such as anguish, catastrophe, deception, despair, injustice, and shock. in phase 2, sharing the diagnosis with family, half of the 16 responses referred to a condition, and were positive, such as informed to be assured, calm approach, need, generally well accepted, and try to deal together. when recalling daily frustrations, in phase 3, half of the 28 responses were classified as a ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 147 condition, such as diminished self-esteem, immobile, life change, loss of joy, and urination retraining. in phase 4, when participants were redefining their life priorities after pc treatment, 13 of the men’s 23 responses (56.5%) were positive, such as life in fullness, restrengthen family ties, resume life, selfcare, and travelling. these answers indicated a mixed scope of classification. overall, the findings suggest that the men’s construction of a lived representation of pc was influenced by several factors: (a) the type of pcrelated information delivered by the urologist; (b) men’s direct, passive reaction to pc-related information delivered by urologists; (c) experiences of online information seeking, mainly after treatment; (d) men’s discourse about normal life without major preand post-treatment disruptions; and (e) the loss of erectile function, which was reported by all the participants and was a major issue. among the francophone men, the most frequently expressed thoughts were a dyad of ideas coded as surprise-healing. this suggests that this group tended to adopt a favourable state of mind in reaction to the uncertainties, difficulties, and contingencies of their disease. for the francophone men, pc represented a disease with no major positive or negative attributes, whose cure is overlaid with life valorization. despite their awareness of the physical and emotional suffering involved, the men tended to gradually take on a positive perception of their life, merged with an awareness of the need for emotional attachment to their social network and for more realistic future. if frustration seemed to mobilize francophone men to overcome or adapt to functional change, that did not preclude their putting into practice efforts to renew their life plans and priorities while being realistic about the future (table 5, table 6). for the francophile men, ideas of cure led to a positive mental attitude and awareness of their emotional needs. their representation of pc involves a disease that requires men to prepare themselves psychologically with self-determination and strength to deal with the uncertainty immediately following medical diagnosis. the resulting physical, mental, and emotional impacts generated comparatively more negative thoughts and feelings. this suggests that the francophile men were less able than the francophones to face frustrations and rebuild their plans, focusing on new life priorities. extent of similar prostate-cancer-related ideas both groups of men expressed similar ideas about pc, which reflected the dominant cultural views of pc that the french host society holds—the men’s culture of affiliation based on their ethnic background seemed to have little influence. there was a silence among men about pc and men’s apparent lack of interest, curiosity, or opportunity to learn about it was identified during the preand post-surgery visits with men in their initial phase of treatment. none of them had sought information from any source. their primary focus was on feeling safer after having had their tumour removed. some men described how learning about pc and dealing with the disease and its aftermath was, in fact, an enlightening experience. information from their urologist demystified the disease and helped the men to understand their situation, face the clinical reality, and strive toward their own rehabilitation. this was a strong contrast to the stories of men who were not informed of their illness or treatment by their doctors. the concepts of normality and natural aging were frequently implied in the men’s discourse. a context of re-establishing normality was evident when they talked about the time “before” (without symptoms) and “after” treatment (resuming a normal life). the men also tended to accept their diminished sexual performance after treatment as a part of “natural change” caused by aging. the advanced age of the participants may have made it easier for them to deal with issues of erectile difficulties than would not be the case for younger men. verifying our interpretation of findings the first author conducted a session with five volunteers (both francophile and francophone) among the study participants to test and verify our interpretation of the findings. in a 60-minute session, she presented them with a simple diagram (figure 1) that portrays pc as a disease that has neither a positive nor a negative image and offers men opportunities to re-evaluate their priorities and to rebuild their future with some limitations. ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 148 the verifiers confirmed our interpretation of the findings, but also commented on healthcare professionals’ influential role in framing constructive views of pc by teaching patients about the disease and treatment procedures. receiving a diagnosis of pc was a significant milestone for the men. even though it is the practice in france for nurses to be involved when patients are told of their diagnosis (rannou et al., 2012), no participant mentioned it, not even the verifiers. the men referred to their encounters with physicians and, less often, with radiation-therapy technicians, psychologists, and physiotherapists. these encounters seemed to be the notable players in the initial phases of their representations of pc. physicians had the most influence, probably because of their early involvement in examination and early detection. the verifiers confirmed that their initial ignorance about pc changed as they learned a great deal about it from their physician, whose authority and expertise were highly appreciated and missed by most participants. this contrasts with the immigrant men’s different experience who reported having had no open dialogue with their physicians. being fully informed by their physicians was linked to the men’s ability to develop a favourable state of mind and help them react constructively to the uncertainties and difficulties they faced. the verifiers corroborated this factor, confirming that educational support is a valuable feature of health care services. discussion francophone and francophile men represented pc as a disease with neither a positive nor a negative meaning—one that is treatable and allows hope for recovery. this view contrasts with how canadian men of irish, scottish, and english descent represent pc (zanchetta et al., 2007a). canadians represent pc as a disease that had damaging consequences and generated painful feelings. although a simple, uncontrolled biological process, it caused losses that might nonetheless co-exist with a hopeful, positive vision of life (zanchetta et al., 2007a). more compatible with the results from our study are those from a study with canadian francophone men (born in canada and immigrants to canada), who represented the disease as an innocuous entity (zanchetta et al., 2007b). it appears that similar representations of pc evolve in french-based cultures in different countries. still, in all three studies, pc patients adopted a predominantly positive outlook on their lives during the rehabilitation phase. their representations were influenced by past and current socializations, as well as gendered cultural practices for healthy lifestyles (buscatto, 2014). how men talk about pc arises from their different experiences, mobility in social spaces, and personal trajectories (buscatto, 2014). in canada, the discourse on pc is highly visible in the media as a matter of public education, social advocacy, debate, and fundraising to promote men’s health (zanchetta et al., 2017). in france, however, the blog posts of pc patients/survivors present an image of survivors as members of a “brotherhood of misery” whose common issue was the absence of sufficient instrumental information about the disease (zanchetta et al., 2016). the bloggers’ views support our findings that stress the importance of full disclosure and provision of extensive information that patients can understand and absorb at appropriate points. this seems to be a key factor in assisting patients to cope with pc and its effects by developing a realistic lived representation. research in france has linked a low level of public education about pc with patients’ concerns over not having sufficient information or understanding about their past, current, or prospective clinical conditions (zanchetta et al., 2018). the french media have made much of a lack of clarity on scientific knowledge, largely arising from the influential discourse of three key social actors: public health authorities responsible for public education, general physicians (gps), who tend to argue against prostate-specific antigen screening in favour of individual medical assessments, and urologists, who perceive themselves to be the most appropriate professionals to inform and educate patients about pc and treatment modalities and assist their decision making (zanchetta et al., 2018). some scholars hypothesize that men’s collective silence about pc and the lack of sufficient information and knowledge that bloggers describe are features of the french socio-cultural context. the silence reflects a collective embarrassment linked to modesty about pc and its impacts on critical attributes of masculinity. furthermore, the apparent lack of scientific clarity ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 149 about pc tends to suppress the expression of firm positions as polemical, and therefore, deters men from seeking pc-related information. since the media channels in france do not disseminate consistent information on the causes, prevention, and treatment of pc, men are unsure about whether or how to act regarding prevention and treatment options (zanchetta et al., 2018). for patients and survivors, other forms of silence seem to coincide with the disease’s silent and asymptomatic development. men’s implicit acceptance of risk and actual disease may be influenced by their awareness of natural aging, but their desire to maintain a good quality of life should promote efforts to prevent and screen for pc. any cultural differences between the desires to stay healthy and to remain sexually active (that is, keep one’s erectile function) would also be considered as a relevant experiential feature to represent pc. in thinking about normality, masculinity, and virility, health, and sexual life, men’s representation of pc reminds them that sexual activity and sexuality are both societal concepts and social markers (welzer-lang, 2008). verdon (2015) found that although only 32 percent of men in france aged 60 to 69 considered sexuality indispensable to their personal balance. french popular culture considers men’s loss of sexuality to imply a harmful rearrangement imposed by the reality of aging. the current hormonal paradigm that defines men by their level of testosterone and hegemonic signs of virility (carol, 2011) threatens alternate constructions of identity, vitality, and virility. as in the popular discourse, our data corroborate that pc is widely believed to be a cause of erectile dysfunction, thus diminishing a symbolic representation of men’s sexuality and virility. given that the real, the imaginary, and the symbolic are all structural components of popular discourse about a given matter (durand, 2012), a cultural representation of pc may bring together societal concepts of sex, health, social markers, and negative consequences (such as loss of erection and libido, among others). by creating situations where men feel comfortable about disclosing their representations, we can sweep aside men’s hesitancy about speaking openly about pc. for example, our data revealed that survivors sometimes describe a social “death” following their cancer diagnosis. this “death” can result from men’s loss of ability to meet cultural expectations about masculinity: to partake in reproduction, to be always ready for sex, and to respond logically to their problems. against a backdrop of traditional portrayals of men as being strong, authoritative, in control, fighters, and at times, violent, the contemporary concept of male virility is in a state of flux (courtine, 2011; verdon 2015). because it affects an organ associated with a man’s sexual and reproductive function and causes sexual impairments, pc paradoxically implies a vulnerability that can threaten and “socially disqualify” a man, meaning his social death (courtine, 2011). the need for rehabilitation in multiple areas of performance requires men to deal with perceived and actual changes in their bodies’ functions and abilities, and to exteriorize their determination toward normalization, role redefinition, and identity reconstruction (manderson, 2011). functional and identity rehabilitation were also noted through men’s different responses to sexual impotence posttreatment. undoubtedly, as more individuals share their experiences and ideas about pc, a critical mass will emerge of diverse disease interpretations and hypotheses. outcomes may include the adoption of preventive behaviours, and new attributions of values by social groups who are concerned about pc, and who seek occasional or continuous follow-up. within ethno-cultural communities, men’s potential to take charge of their prostate health will ultimately overcome the constraints imposed by their collective fear. such fear undermines the development of men’s proactive health behaviour and limits the scope of awareness about pc risk in certain population groups. overcoming silence and fear implies learning about pc and its possible interference in men’s life plans (and not uniquely in their sexual life). this would counteract the power of current popular thinking about its causes and consequences. as social actors, men are expected to share information to highlight the beneficial analysis of virility loss versus survival. for example, male cancer survivors in france tend to demonstrate their resilience to life adversities by reinforcing their strength and stoicism (inserm & inca, 2014). if the notion of risk were added to ideas of damage and partial benefits, men’s discourse about ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 150 trusting their urologists could highlight the benefits of focusing on normalization and damage control. study limitations two aspects of the study design and context limit the findings’ transferability. first, the study’s small sample size and exploratory nature allowed only a preliminary, partial understanding of how francophile immigrant men’s ideas of pc interact with the dominant discourse on pc in the host french culture and health system. second, for ethical reasons, it was very difficult to assess and compare how much appropriate pc-related information the men received (particularly immigrant men with less schooling and using a second language), or whether there was a possible omission of information or understanding. there may be adverse conditions at play that the study was unable to reveal. moreover, the study was unsuccessful in attempts to involve the france national pc survivor’s association in the study, which may play an important role in shaping men’s representation of pc. another factor in understanding immigrant men’s experience and social representation of pc is their length of residence in the host country. the francophile men in this study were not recent immigrants— their integration into mainstream french culture is likely advanced, and the influence of their native ethnic culture is possibly lessened. clinical implications our findings on men’s ideas about pc of those living in the cities of paris and gonesse can be used to contribute to the production of culturally and gendersensitive educational materials for patients and for public education, as well as in-service initiatives for health and social services providers, at the level of health promotion to complex, tertiary care, as well as rehabilitation. the variety of words that men used and their valence of meaning (positive, neutral, or negative) to describe their clinical experience of pc support should interest clinicians, particularly in drawing attention to how professional discourse influences the population through media, and how patients react to health providers’ discussion about their prostate health. representation of pc is currently influenced mainly by urologists, while the clinical experience as lived by the patients completes the mental image of pc that patients build. clinicians may consider the incorporation of these words in their own spoken and written language used in the assessment interviews, screening tools, evaluation follow-up feedback, etc. based on lessons, we learned about men’s lived experiences of pc and the meanings they attribute to it in this exploratory study, it was possible to identify some research questions for future investigation into the factors at play in transcultural representations of pc. these questions appear in table 7. since few countries have implemented a men’s health policy (zanchetta et al., 2015) and because pc remains a top health concern for men of all ages, educating the public to be aware of and to adopt proactive prostate health behaviour is a critical priority that must include sensitivity to the cultural context and situation of immigrant men. acknowledgement the authors acknowledge and thank dr. ahmad sabri and dr. hanene boudabous (department of clinical oncology, centre hospitalier emmanuel rain, gonesse), as well as rosita mathias (department of urology, hôpital saint louis, paris) for their inestimable contribution to the recruitment of participants. we also thank dr. marc keller (former head of international dept.), maéva jaoui, florence magendie, amélie de haut de sigy, and marie-claire salmon, the latter psychologists at the ligue nationale contre le cancer (paris, france) for their assistance with the cultural validation and adaptation of the interview guide from english to french. our thanks to dr. rachid bennegadi for an insightful discussion about cultural representation of diseases, to dr. stephanie larchanché and dr. christian bergeron for reviewing an early draft of the manuscript as well as to dr. sylvia novac for editing an early draft. finally, notre chaleureux remerciement à tous les hommes qui ont partagé avec nous leur vécus et enthousiasme par l’étude au cours de toutes ces phases. ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 151 references addis, m. e., & mahalik, j. r. (2003). men, masculinity, and the context of help seeking. american psychologist, 58, 5-14. doi:10.1037/0003-066x.58.1.5 appleton, l., wyatt, d., perkins, e., parker, c., crane, j., jones, a., moorhead, l., brown, v., wall, c., & pagett, m. (2015). the impact of prostate cancer on men’s everyday life. european journal of cancer care, 24, 71– 84. doi:10.1111/ecc.12233. arber, s. (2004). gender and physical health. international encyclopedia of the social & behavioral sciences, 5960-5965. abric, j.-a. (2001). pratiques sociales et représentations [social practices and représentations]. presses universitaires de france. altheide, d. l., & johnson, j. m. (1998). criteria for assessing interpretative validity in qualitative research. in n. k. denzin & y. s. lincoln (eds.), collecting and interpreting qualitative materials (pp. 283-312). sage. bardin, l. (1997). l’analyse de contenu [content analysis]. (8th ed.). presses universitaires de france. broom, a. (2004). prostate cancer and masculinity in australian society. a case of stolen identity? international journal of men’s health, 3(2), 73-91. doi:10.3149/jmh.0302.73 buscatto, m. (2014). la culture, c’est (aussi) une question de genre [culture is (also) a question of gender]. in s. octobre (ed.), questions de genre, questions de culture (pp. 125-143). ministère de la culture et de la communication. carol, a. (2011). la virilité face à la médicine [virility in the face of medicine]. in j.-j. courtine (ed.), la virilité en crise? les xxe-xxie siècles (pp. 31-70). éditions du seuil. courtenay, w. h. (2003). key determinants of the health and well-being of men and boys. international journal of men’s health, 2(1), 1-27. doi:10.3149/jmh.0201 creswell, j. w. & creswell, j. d. (2018). qualitative inquiry and research design: choosing among five traditions (5th ed). sage. chambers, s. k., lowe, a., hyde, m. k., zajdlewicz, l., gardiner, r. a., sandoe, d., & dunn, j. (2015). defining young in the context of prostate cancer. american journal of men’s health, 9(2), 103-114. doi:10.1177/1557988314529991 connell, r. w., & messerschmidt, j. w. (2005). hegemonic masculinity: rethinking the concept. gender & society, 19(6), 829-859. doi:10.1177/0891243205278639 courtine, j.-j. (ed.). (2011). la virilité en crise? les xxe-xxie siècles [manhood in crisis? the twentieth-twenty-first centuries]. éditions du seuil. durand, g. (2012). l’imagination symbolique [the symbolic imagination]. presses universitaires de france. flament, c. (1994). aspects périphériques des représentations sociales [peripheral aspects of social representations]. in c. guimelli (ed.), structures et transformations des représentations (pp. 139-141). delachaux & niestlé. frenkel, m., engebretson, j. c., gross, s., peterson, n. e., giveon, a. p., sapire, k., & hermoni, d. (2016). exceptional patients and communication in cancer care—are we missing another survival factor? supportive care in cancer, 24(10), 4249-4255. doi:10.1007/s00520-016-3255-6 gough, b. (2013). the psychology of men's health: maximizing masculine capital. health psychology, 32(1), 1-4. doi:10.1037/a0030424 goujon, a., legrand, g., verine, j., hennequin, c., meria, p., mongiat artus, p., desgrandchamps, f., & masson-lecomte, a. (2020). surveillance active du cancer de prostate: survie sans traitement curatif selon critères d’éligibilité stricts ou élargis [active surveillance of prostate cancer: treatement-free survival according to restricted or expanded eligibility criteria]. progres en urologie, 30(12), 646–654. https://doi.org/10.1016/j.purol.2020.04.0 05 grove, s., burns, n., & gray, j. r. (2013). the practice of nursing research: appraisal, synthesis and generation of evidence (7th ed.). elsevier saunders. https://doi.org/10.1177%2f1557988314529991 https://doi.org/10.1016/j.purol.2020.04.005 https://doi.org/10.1016/j.purol.2020.04.005 ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 152 guimelli, c. (2001). la pratique infirmière: pratiques et représentations sociales [nursing practice: social practices and representations]. in j. c. abric (ed.), pratiques sociales et représentations (2nd ed.). presses universitaires de france. henselmans, i., de haes, h. c., & smets, e. m. (2013). enhancing patient participation in oncology consultations: a best evidence synthesis of patient‐targeted interventions. psycho‐ oncology, 22(5), 961-977. doi:10.1002/pon.3099 inserm, & institut national du cancer. (2014). la vie deux ans après un diagnostic de cancer: de l’annonce à l’après cancer [life two years after a diagnosis of cancer: from the announcement to the post-cancer] (collection études et enquêtes). inca. retrieved from http://www.ecancer.fr/expertises-etpublications/catalogue-despublications/la-vie-deux-ans-apres-undiagnostic-de-cancer-de-l-annonce-a-lapres-cancer institut national du cancer. (2016). les cancers en france [cancer in france]. (2015 ed.). retrieved from http://www.ecancer.fr/actualites-etevenements/actualites/publication-de-ledition-2015-des-cancers-en-france institut national du cancer. (2015). plan cancer 2014-2019 guérir et prévenir les cancers: donnons les mêmes chances à tous, partout en france [cancer plan 2014-2019 cure and prevent cancer: let's give the same chances to everyone, everywhere in france] (2nd ed.). retrieved from http://www.e-cancer.fr/expertises-etpublications/catalogue-despublications/plan-cancer-2014-2019 institut national de la statistique et des études économiques. (2010). tableau de l’économie française 2010 [table of the french economy 2010]. retrieved from http://www.insee.fr/fr/themes/document .asp?ref_id=t10f039 jemal, a., vineis, p., bray, f., torre, l., & forman, d. (2014). l’atlas du cancer [the cancer atlas] (2nd ed.). american cancer society. jodelet, d. (1999). représentations sociales: un domaine en expansion [social representations: an expanding field]. in d. jodelet (ed.), les representations sociales (6th ed, pp. 47-48). presses universitaires de france. le moigne, p. (2010) (commentary). la qualité de vie: une notion utile aux sciences sociales? [quality of life: a useful concept for social sciences?]. sciences sociales et santé, 28(3), 75-84. https://doi.org/10.3917/sss.283.0075 lilienfeld, s. o., wood, j. m., & garb, h. n. (2000). the scientific status of projective techniques. psychological science in the public interest, 1(2), 27-66. doi: 10.1111/1529-1006.002 manderson, l. (2011). surface tensions: surgery, bodily boundaries and the social self. left coast press. miles, m. b., huberman, a. m., & saldaña, j. (2020). qualitative data analysis: a methods sourcebook. sage. noels, k. a., kil, h., & fang, y. (2014). ethnolinguistic orientation and language variation: measuring and archiving ethnolinguistic vitality, attitudes, and identity: archiving ethnolinguistic orientation. language and linguistics compass, 8(11), 618-628. doi:10.1111/lnc3.12105 organisation internationale de la francophonie. (2014). the french language worldwide 2014. éditions nathan. retrieved from http://www.francophonie.org/img/pdf/oif _synthese_anglais_001-024.pdf pires, a. p. (1997). échantillonnage et recherche qualitative: essai théorique et méthodologique [sampling and qualitative research: theoretical and methodological essay]. in groupe de recherche interdisciplinaire sur les méthodes qualitatives (ed.), la recherche qualitative: enjeux épistémologiques et méthodologiques (pp. 113-169). gaëtan morin. rannou, s., guirimand, n., cartron, l., tresvaux du fraval, f., & sahbatou, y. (2012). le vécu de l'annonce d'un cancer à l'ère du dispositif d'annonce [the experience of the announcement of cancer in the era of the announcement device]. psycho-oncologie, 5(4), 227-234. doi:10.1007/s11839-0110330-6 http://www.e-cancer.fr/expertises-et-publications/catalogue-des-publications/la-vie-deux-ans-apres-un-diagnostic-de-cancer-de-l-annonce-a-l-apres-cancer http://www.e-cancer.fr/expertises-et-publications/catalogue-des-publications/la-vie-deux-ans-apres-un-diagnostic-de-cancer-de-l-annonce-a-l-apres-cancer http://www.e-cancer.fr/expertises-et-publications/catalogue-des-publications/la-vie-deux-ans-apres-un-diagnostic-de-cancer-de-l-annonce-a-l-apres-cancer http://www.e-cancer.fr/expertises-et-publications/catalogue-des-publications/la-vie-deux-ans-apres-un-diagnostic-de-cancer-de-l-annonce-a-l-apres-cancer http://www.e-cancer.fr/expertises-et-publications/catalogue-des-publications/la-vie-deux-ans-apres-un-diagnostic-de-cancer-de-l-annonce-a-l-apres-cancer http://www.e-cancer.fr/expertises-et-publications/catalogue-des-publications/la-vie-deux-ans-apres-un-diagnostic-de-cancer-de-l-annonce-a-l-apres-cancer http://www.e-cancer.fr/actualites-et-evenements/actualites/publication-de-l-edition-2015-des-cancers-en-france http://www.e-cancer.fr/actualites-et-evenements/actualites/publication-de-l-edition-2015-des-cancers-en-france http://www.e-cancer.fr/actualites-et-evenements/actualites/publication-de-l-edition-2015-des-cancers-en-france http://www.e-cancer.fr/actualites-et-evenements/actualites/publication-de-l-edition-2015-des-cancers-en-france http://www.e-cancer.fr/expertises-et-publications/catalogue-des-publications/plan-cancer-2014-2019 http://www.e-cancer.fr/expertises-et-publications/catalogue-des-publications/plan-cancer-2014-2019 http://www.e-cancer.fr/expertises-et-publications/catalogue-des-publications/plan-cancer-2014-2019 http://www.insee.fr/fr/themes/document.asp?ref_id=t10f039 http://www.insee.fr/fr/themes/document.asp?ref_id=t10f039 https://doi.org/10.3917/sss.283.0075 http://www.francophonie.org/img/pdf/oif_synthese_anglais_001-024.pdf http://www.francophonie.org/img/pdf/oif_synthese_anglais_001-024.pdf ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 153 robertson, s. (2007). understanding men and health: masculinities, identity and wellbeing. open university press. sandelowski, m. (1998). the call to experts in qualitative research. research in nursing & health, 21(5), 467-471. doi:10.1002/(sici)1098240x(199810)21:5<467:aidnur9>3.0.co;2-l spendelow, j. s., joubert, h. e., lee, h., & fairhurst, b. r. (2018). coping and adjustment in men with prostate cancer: a systematic review of qualitative studies. journal of cancer survivorship, 12, 155–168. https://doi.org/10.1007/s11764-0170654-8 verdon, b. (2015). la sexualité à l’épreuve du vieillissement. à propos d’altération et d’altérité [sexuality in the face of aging. about alteration and otherness]. in m. janin-oudinot, m.-c. durieux, & l. danonboileau (eds.), la sexualité masculine (pp. 153-171). presses universitaires de france. vos, j. (2015). meaning and existential givens in the lives of cancer patients: a philosophical perspective on psycho-oncology. palliative & supportive care, 13(4), 885. doi:10.1017/s1478951514000790 welzer-lang, d. (2011). débattre des hommes, étudier les hommes et intervenir auprès des hommes dans une perspective de genre [debating men, studying men and intervening with men from a gender perspective]. in d. welzer-lang & c. z. gaudron (eds.), masculinités: état des lieux (pp. 41-54). éditions érès. welzer-lang, d. (2008). les hommes et le masculin [men and the masculine]. petite bibliothèque payot. wood, m. j., & ross-kerr, j. c. (2011). basic steps in planning nursing research: from question to proposal (7th ed.). jones and bartlett. white, a. k. (2006). men’s health in the 21st century. international journal of men’s health, 5(1), 1-17. doi:10.3149/jmh.0501.1 zanchetta, m., cognet, m., lam-kin-teng, m.-r., dumitriu, m. e., haag, c., kadio, b., desgrandchamps, f., & renaud, l. (2018). french media and ideas about prostate cancer: insights for public education. health promotion perspectives, 8 (2), 92-101. doi:10.15171/hpp.208.12 zanchetta, m. s., byam, a. a., solomon, d., jalili, k., haag, c., & tallarico, s. (2017). reports on boys’, youth’s and men’s health in canadian newspapers: now what? health promotion perspectives, 7(3), 145-154. doi: 10.15171/hpp.2017.27 zanchetta, m. s., cognet, m., lam-kin-teng, m.-r., dumitriu, m.-e., rhéaume, j., & renaud, l. (2016). reading beyond the blog testimonies of survivors’ quality of life and prostate cancer representation. health and quality of life outcomes, 14, 171. doi:10.1186/s12955-016-0568-6 zanchetta, m., maheu, c., kolisnyk, o., mohamed, m., guruge, s., kinslikh, d., christopher, j., stevenson, m., sanjose, c., sizto, t., & byam, a. (2015). canadian men’s selfmanagement of chronic diseases: a literature analysis of strategies for dealing with risks and promoting wellness. american journal of men’s health, 1-19, doi:10.1177/1557988315577674 zanchetta, m. s., cognet, m., xenocostas, s., aoki, d., & talbot, y. (2007a). prostate cancer among canadian men: a transcultural representation. international journal of men’s health, 6(3), 224-258. doi: 10.3149/jmh.0603.224 zanchetta, m. s., perreault, m., kaszap, m., & viens, c. (2007b). patterns in information strategies used by older men to understand and deal with prostate cancer-related information: an application of the modélisation qualitative research design. international journal of nursing studies, 44(6), 961-972. doi: 10.1016/j.ijnurstu.2006.03.018 · zanchetta, m. s., cognet, m., xenocostas, s., & aoki, d. (2005). l’image inductrice finale pour le recueil d’une représentation synthèse: peut-on faire l’appel aux idées redimensionnées dans une perspective de genre? ? [a final image to apprehend a synthesis representation: can we use an inductor gendered image?]. in c. royer (ed.), l'instrumentation dans la collecte des données: choix et pertinence. coll. les actes, 2, 86-97. association pour la recherche qualitative & uqtr. retrieved https://doi.org/10.1007/s11764-017-0654-8 https://doi.org/10.1007/s11764-017-0654-8 ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 154 from http://www.recherchequalitative.qc.ca/documents/files/revue/h ors_serie/hors_serie_v2/mzanchetta%20e t%20al%20hs2-issn.pdf http://www.recherche-qualitative.qc.ca/documents/files/revue/hors_serie/hors_serie_v2/mzanchetta%20et%20al%20hs2-issn.pdf http://www.recherche-qualitative.qc.ca/documents/files/revue/hors_serie/hors_serie_v2/mzanchetta%20et%20al%20hs2-issn.pdf http://www.recherche-qualitative.qc.ca/documents/files/revue/hors_serie/hors_serie_v2/mzanchetta%20et%20al%20hs2-issn.pdf http://www.recherche-qualitative.qc.ca/documents/files/revue/hors_serie/hors_serie_v2/mzanchetta%20et%20al%20hs2-issn.pdf ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 155 table 1. sample questionnaire questions question evocative words and projective answers (in the order presented in the questionnaire) choose with an « x » all the words that are closest to the ideas and feelings you had since the moment your physician told you you had prostate cancer. surprise, sadness, fear, fatality, trust, cure, anger, help, urgency, combat, action, strength, uncertainty, energy, learning write the most important idea regarding each of the following words that comes to mind when you think about your prostate cancer. communication, knowledge, information, sexuality, treatment, probability, results, virility, cultural values, family, health, needs, relationships, comprehension, support, help, prostate disease, society, culture, community, faith, future complete each sentence using short phrases (maximum of 3 words per line). choose the words that best describe your daily life regarding the treatment of your prostate cancer. my lifestyle is…; my state of mind is…; my well-being is…; my spiritual life is…; my main strength is…; my positive feelings are…; my hope is…; my moments of well-being despite the illness are…; my ability of making decision is…; my plans for my future are…; my most difficult moments are…; my virility is…; my concerns are…; my masculinity is…; my reason to survive prostate cancer is… you are invited to create a symbolic image of your experience with prostate cancer and all important ideas you have regarding your life with this disease. instructions: imagine a tree. prostate cancer is the tree root. write in the square on the tree trunk the most important idea you’ve had since you were diagnosed. this tree has 4 branches that represent the important moments for a man living with prostate cancer: 1) the moment of the medical diagnosis confirmation, 2) the moment of announcing to your family that you have prostate cancer, 3) the moment of facing frustrations, and 4) the moment of establishing new life priorities. in each of the 5 leaves on each branch, write all you can remember of your experiences during those moments in your life. ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 156 table 2. participants’ socio-demographic identification participant pseudonym age range marital status country of birth countries of previous residence number of spoken languages years of education past occupations current occupation francophiles juan 71-80 married spain algeria, spain 2 10 pharmacy technician retired franz 61-70 married sweden austria, sweden 4 16.5 lawyer retired pedro 61-70 married spain --3 8 car builder, stock market retired ibrahim 71-80 married algeria algeria 3 home-schooled train conductor retired francophones mustapha 71-80 married algeria algeria, french guyana 2 23 administrative clerk retired abel 61-70 single congobrazzaville belgium, cameroon, chad, democratic republic of congo, guinea, italy, ivory coast, tanzania, zimbabwe, zambia 3 29 priest sabbatical leave roger 71-80 married france (guadeloup e) --2 3 illustrator, military, railroad worker retired pierre 61-70 married france --1 15 pharmacy technician, police officer retired ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 157 fortuné 51-60 commonlaw tunisia tunisia 3 12 + 1 year home school salesperson dental prosthetic technician alain 71-80 married france --2 15 preceptor tax, military, production programmer retired jean 71-80 divorced france belgium, italy, usa 3 20 computer engineer, security technician retired salim 51-60 separated algeria algeria 1 12 --businessman simon 71-80 married france --2 18 television engineer, military retired benoit 71-80 married france --1 15 administrator retired claude 51-60 married france --2 20 --director information technology jean-marie 61-70 married france (martinique) france (martinique) 3 13 administrator, military retired patrick 71-80 married france --1 17 industry manager retired ismael 81-90 married algeria algeria 2 14 butcher retired dieudonné 61-70 widower congobrazzaville congobrazzaville 2 19 architect, tv reporter, highschool teacher retired ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 158 table 3. family social and health profile participant pseudonym family cancer family prostate cancer year of diagnosis underwent treatment current self-reported health status francophiles juan yes brother 2010 pt/rt very good franz no --2008 pt good pedro no --1997 pt good ibrahim no --2011 ht overall good francophones mustapha no --2013 pt good abel no --2012 pt not good at all roger no --2011 rt good pierre yes uncle 2008 pt quite good fortuné no --2008 pt very good alain no --2008 pt very good jean no --2009 pt very good salim no --2008 pt good simon no --2010 pt very good benoit no --2008 pt/rt/ht good claude yes undefined 2008 pt very good jean-marie no --2006 rt not good at all patrick no --2010 pt/rt/ct good ismael no --2009 ct not good at all dieudonné no --2004 pt/rt/ct quite good legend: chemotherapy: ct hormonotherapy: ht prostatectomy: pt ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 159 table 4. trend of prostate cancer-related ideas expressed at clinical phases by francophile and francophone men sample phase 1 phase 2 phase 3 phase 4 current synthesis idea of prostate cancer francophile (n=4; 100%) balance of positive (n=7; 37%) and negative ideas (n=7; 37%) balance of positive (n=8; 40%) and negative ideas (n=8; 40%) predominantly negative ideas (n=9; 47%) predominantly positive ideas (n=7; 78%) predominantly negative ideas (n=2; 50%) francophone (n=12; 80%) predominantly negative ideas (n=31; 61%) more frequent negative ideas (n=12; 40%) predominantly negative ideas (n=22; 76%) more frequent positive ideas (n=16; 64%) balance of positive (n=6; 50%) and negative ideas (n=6; 50%) phase 1: diagnosis confirmed phase 2: sharing diagnosis with family phase 3: dealing with daily frustrations phase 4: establishing new priorities ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 160 table 5. francophone men’s main thoughts and feelings by clinical stage, as synthesized in a tree of ideas, by valence of meaning* main ideas about prostate cancer (the tree trunk)—balance of ideas between positive: care-related, cure (n=2), life, treat the root, tree of life; and negative: battle, mental illness, paradox, serious, threat, treatment otherwise death phase 1. confirming medical diagnosis—negative ideas: abnegation, anxiety, brought down, confirm suspicion, confused, laughing-crying, death, dejection, despair (n=2), did not know how to tell my partner, disaster, discouraged, dramatic, end of my activities, fear (n=4), feeling lost, injustice, isolation, life in limbo, no more seeing women, shock, test, thinking about my business, thunder, uncertainties (n=2), worries (n=3). phase 2. sharing diagnosis with family—negative ideas: crying, difficult (n=2), disaster, dramatic, fear, my wife’s shock, resignation, sadness (n=2), trauma, worries phase 3. facing daily frustrations—negative ideas: ashamed with women, change of life, decrease in self-esteem, discomfort over not being able to go out with women, end of life as a man, end of normal life, everything is going wrong, fear of frustrating my wife, feeling anxious, frustrated with my elderly mother’s worries, frustrated over need to face mortality, getting used again to urinate, loss of happiness, loss of libido, managing drinking 3l of water daily, no erections, not being able to out with children, not daring too much, sexual frustrations, sick and cannot walk, silence, terrible. phase 4. establishing new life priorities—positive ideas: adaptation, bonding with children, enjoy (n=2), hope, joy, life goes on, life in abundance, money and my daughter, other projects, see the children grow up, seek solutions, strengthen family ties, strengthen friendships. *note: translated from french to english by the first and fourth authors ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 161 table 6. francophile men’s main thoughts and feelings by clinical stage, as synthesized in a tree of ideas, by valence of meaning* major ideas about prostate cancer (the tree trunk) —negative ideas: death, stop phase 1. confirming medical diagnosis—balance of ideas between positive: attention, determination, hope, intervention, live for the future, to fight, willpower, and negative: deception, fear (n=3), fragility, lack of courage, lack of spirit, shock, side effects. phase 2. sharing diagnosis with one’s family—balance of ideas between positive: calm approach, determination, need, to explain, to make sure, try to make it through together, willpower, and negative: fear (n=2), sadness (n=2), crying, shock (n=2), asked if it was false. phase 3. facing daily frustrations—negative ideas: immobility, fatigue, worry, fear, deception, decrease, depression, fear for my virility, very difficult incontinence. phase 4. establishing new life priorities—positive ideas: action, cultural activities, hobbies, i know about cancer, look after yourself, need to operate, travelling. *note: translated from french to english by the first and fourth authors ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 162 table 7. emerging questions for future studies • might older men’s acceptance of natural aging and death, and their desire to maintain a good quality of life, be factors that influence their lack of interest in seeking out preventive care and prostate cancer screening services? • do cultural differences exist regarding men’s desire to maintain good health and their concern over sexual performance and erectile capability? if not, is this link influenced only by age? • why do men exhibit little interest in learning about prostate cancer and adopting early detection practices, or in participating more actively in self-management? • what is the connection between men’s reluctance to talk about prostate cancer and their collective embarrassment, as well as their limited knowledge of the disease and the lack of clarity about the scientific knowledge held by health authorities, and generalist and specialist physicians? • why is prostate cancer not more freely and easily discussed between physicians and patients, or among men? • what role does modesty play in the silence about prostate cancer (including issues of erections, sexuality, and sensuality) between physicians and patients? ihtp, 2(2), 139-163, 2022 cc by-nc-nd 4.0 issn 2563-9269 163 figure 1. pictorial description of prostate cancer representation institut national de la statistique et des études économiques. (2010). tableau de l’économie française 2010 [table of the french economy 2010]. retrieved from zanchetta, m. s., byam, a. a., solomon, d., jalili, k., haag, c., & tallarico, s. (2017). reports on boys’, youth’s and men’s health in canadian newspapers: now what? health promotion perspectives, 7(3), 145-154. doi: 10.15171/hpp.2017.27 ihtp, 2(2), 175-192, 2022 cc by-nc-nd 4.0 issn 2563-9269 175 implementing a nurse-led quality improvement project in nursing home during covid 19 pandemic: a qualitative study silvia gonella1, paola di giulio2, marianna angaramo2, valerio dimonte1, sara campagna2, kevin brazil3 & the mysupport study group3 1department of public health and pediatrics, university of torino, torino, italy; azienda ospedaliero universitaria città della salute e della scienza di torino, torino, italy; 2department of public health and pediatrics, university of torino, torino, italy; 3school of nursing and midwifery, medical biology centre, queen’s university, belfast, ireland corresponding author: p. di giulio (paola.digiulio@unito.it) abstract background: there is broad consensus that the quality of nursing home (nh) care is a research priority to advance nh practice. however, nhs often fail to implement quality improvement (qi) research projects and complex circumstances such as coronavirus disease 19 (covid-19) pandemic may further hinder compliance. this study aims to describe the challenges associated with implementing a nurse-led qi project in nh during covid-19 pandemic and potential strategies for their overcoming. methods: a descriptive qualitative study was performed, and three data collection strategies employed, including: 1. semi-structured, open-ended interviews with follow-up questions (one nh manager, three members of the nh staff, and two family caregivers of people with advanced dementia); 2. research diary; and 3. in-the-field-notes. a combined deductive and inductive content analysis was adopted to analyze data. results: challenges may be anticipated or unanticipated. qi projects should include preliminary assessments to identify the willingness to change and establish partnerships at multiple levels with all stakeholders, adjust the implementation plan to the organizational context, and be open to ongoing changes. conclusions: early and regular engagement of stakeholders strengthen relationships. moreover, an ongoing reflective practice throughout the entire implementation process promotes openness to change, and finally learning and improvement. keywords covid-19; nurses; nursing home; qualitative research; quality improvement funding source this study has received funding from the european union’s horizon 2020 research and innovation programme under grant agreement no 643417. this is an eu joint programme neurodegenerative disease research (jpnd) project. the project is supported through the following funding organisations under the aegis of jpnd www.jpnd.eu: canada, canadian institutes of health research; czech republic, ministry of education, youth and sport; netherlands, netherlands organisation for health research and development; republic of ireland, health research board; uk, alzheimer’s society. background ihtp, 2(2), 175-192, 2022 cc by-nc-nd 4.0 issn 2563-9269 176 there is broad consensus that improving the quality of nursing home (nh) care is priority for research and practice to advance nh practice, particularly for people with advance dementia at the end of life (morley et al., 2014). in fact, even in countries with relatively high levels of palliative care development in nhs (i.e., belgium, england, and the netherlands), there is wide room for improvement particularly in residents’ physical and emotional distress near death and advance care planning (pivodic et al., 2018). the profile of nh residents is changing compared to the past: they have higher levels of dependency, impaired cognitive functioning, and their death is usually expected within three years from institutionalization (joling et al., 2020; ng et al., 2020). consequently, nh staff has to address complex, physical, emotional, spiritual, and existential needs. unfortunately, nh staff reported that residents’ or their families’ needs could be missed due to insufficient resources, lack of education, and poor or missed communication (kong, kim, & kim, 2021; schonfeld, stevens, lampman, & lyons, 2012). similarly, over half of families with a relative in a nh, reported that their relative received insufficient emotional support, one third was unsatisfied with symptom control, and over 40% was concerned about information received (teno et al., 2004). quality improvement (qi) research projects characterized by structured, organization-wide approaches aimed to improve work processes (berlowitz et al., 2003), are emerging as promising means for enhancing the nh care quality (toles, colón-emeric, moreton, frey, & leeman, 2021). their implementation is associated with improved residents’ outcome, increased staff satisfaction and standardization of advance care planning in practice (kezirian et al., 2018; mills et al., 2019; vogelsmeier et al., 2021). however, nhs often fail to implement qi research projects aimed to introduce innovative care practices (cranley et al., 2018; rantz et al., 2012). literature suggests that nhs are confronted with unique challenges which may complicate the implementation of qi research projects, including vertical organizational structure with top-down communication; limited amount of time the staff can devote to qi activities due to staffing shortages, caring for residents with increasingly complex conditions, and compliance with filling documentation; high staff turnover; perceptions that qi activities are burdensome; lack of experience in implementing innovations; researchers perceived as outsiders who bare deficits of the nh; and poor opportunities to be involved in research (jenkins, smythe, galant-miecznikowska, bentham, & oyebode, 2016; lam et al., 2018; maas, kelley, park, & specht, 2002). regular and informal reinforcement as well as ongoing meetings between researchers and the nh staff and leadership facilitate success of qi projects by promoting understanding of qi activities and equipping nh staff with implementation skills (mills et al., 2019). however, when these regular meetings are not possible such as during coronavirus disease 19 (covid-19) pandemic (chen, ryskina, & jung, 2020; miralles et al., 2021), misunderstanding are more likely with increased risk of participants’ frustration and attrition (almost et al., 2016). moreover, the covid-19 pandemic exposes nh staff to increased workload and emotional burden of caring for residents who face isolation, illness, and death alone due to visitation restrictions (white, wetle, reddy, & baier, 2021). these complex and stressful circumstances may further hinder participation to and compliance with qi activities. exploring obstacles and facilitators to implementing qi projects is essential to understand the dynamics of a context and identify key strategies to create a successful research environment, particularly during difficult times and in complex settings such as nhs (mills et al., 2019). moreover, looking at different stakeholders’ perspective including researchers, nh staff, nh leadership, family caregivers, and residents, when possible, provides a comprehensive overview of potential barriers and resources for implementing qi projects. study aim and research question the aim of this study was to identify and summarize the challenges encountered during the implementation of a nurse-led qi research project in the nh setting during covid-19 pandemic and strategies employed for their overcoming, by exploring multiple stakeholders’ perspectives. our research question was as follows: what are the challenges to successfully implement a nurse-led qi research project in nh during difficult times such as ihtp, 2(2), 175-192, 2022 cc by-nc-nd 4.0 issn 2563-9269 177 covid-19 pandemic and potential strategies for their overcoming? methods study design a descriptive qualitative study design (sandelowski, 2000) was used while implementing a nurse-led qi research project on family care conferences for caregivers of people with advanced dementia in nh (primary study) between march to june 2021 (mysupport study, 2019-2022). methods have been reported here according to the consolidated criteria for reporting qualitative studies (coreq) guidelines (tong, sainsbury, & craig, 2007). the coreq guidelines guide in reporting important aspects of the research team, study methods, context of the study, findings, analysis, and interpretation. quality improvement research project a transnational multidisciplinary implementation study, known as mysupport study (2019-2022), that involved a consortium of six countries (canada, united kingdom, ireland, italy, netherlands, and czech republic), explored the benefits of structured nurse-led family care conferences associated with written resources in supporting family caregivers of nh residents with advanced dementia who have to take decisions for their relative’s end-of-life care, as perceived by family caregivers themselves and healthcare professionals. the intervention was delivered by trained nursing staff. training was a merge of online and face-to-face: firstly, nurses attended a 3-hours online training and then two face-to-face meetings one hour and half each. training content included a review of the written resources used during family meetings, how to select families, organize and conduct a family conference, reflection on communication skills required for effective family conference and documenting process and outcomes. the online training module was accessible for the entire project to allow nurses solve doubts that could arise as the project unfolded. the intervention (i.e., structured nurse-led family care conferences) has been implemented across a minimum of two nhs per participating country over a 12-month period. current study the current study explores challenges encountered during the early phases of mysupport study implementation in one italian nh. this site is an urban, non-profit nh that assists elderly people privately or through agreements with the national health care service. the nh is in a town of just over 5,000 inhabitants that is close to main roads and easily reachable with public transportation. it provides care to 106 residents who are located into five wards according to their care needs and does not have a dedicated dementia care unit despite 36 residents currently have a formal diagnosis of dementia. there is no specific protocol in use regarding advance care planning and family conferences take place according to a resident’s changing health status and family caregivers’ needs. time of care depends on regional regulation (dgr 30 july 2012, n. 45-4248): residents at high care intensity receive 30 to 46 minutes per day of nursing, psychological and rehabilitative care compared to 8 minutes/day for residents at low care intensity. the staffing structure covers five areas, including clinical, rehabilitation, social care, service and administrative, and has regular access to general practitioners, geriatricians, physiotherapists, psychologists, and educators. dieticians, dentists, specialist nurses, pharmacists and social workers are external partners in care. data collection process two female nurses (one external hereafter external facilitatorand one internal hereafter internal facilitatorto the nh) trained in qualitative research were responsible for data collection. specifically, they were (a) a research nurse with postgraduate specialization in bioethics and (b) a nurse experienced in nh end-of-life care, respectively. three data collection strategies were employed, including: 1. semi-structured, open-ended interviews with follow-up with probe questions; 2. research diary; and 3. in-the-field-notes. the external facilitator (sg) carried out six interviews exploring the perspective of nh manager, internal facilitator, two nh workers who were informed of the project and not delivering family care ihtp, 2(2), 175-192, 2022 cc by-nc-nd 4.0 issn 2563-9269 178 conferences (hereafter key informants), and two family caregivers of people with advanced dementia at the end of life, about their perceived barriers and opportunities for implementing mysupport study. identification of key informants and family caregivers was discussed and shared among nh manager, internal and external facilitator. potential participants were informed about the project in-person or over the telephone. interviews were audio-recorded and transcribed verbatim after being listened to several times. a member of the team (ma) transcribed the interviews. another member (vd) checked transcripts against audio-recorded interviews to assure accuracy. participants had the opportunity to review their transcript and only two participants requested copies which were returned with no revisions. interviews had a mean duration of 12 (range 7-16) minutes. the internal facilitator (ma) kept a research diary where she reported her “on action” reflections (janssens, bos, rosmalen, wichers, & riese, 2018; schon, 1984), which were in-depth personal reflections about experienced situations and emotions. the “on action” reflections were collected over the entire implementation process, thus making the research diary as a repository for personal reflections (snowden, 2015). both the internal and the external facilitator collected and regularly shared their “in action” reflections (janssens et al., 2018; schon, 1984) through in-the-field notes, thus ensuring validity and reliability of data collection and minimizing researcher bias. in-the-field notes were defined as written narratives of observational data emerged by fieldwork including descriptive and interpretive data based on the observational experience of the researcher (jackson, 2019). the “in action” reflections were collected over the overall implementation process with regard to: (i) the interview plan (e.g., whom to interview; how to approach participants; how to word, how order and pose questions; how to record what was being said tape or notes -; and when to stop) (pawluch, 2005); (ii) the setting for the interview (e.g., nh, interviewee’s house); (iii) the appearance and demeanor of participants (e.g., emotional status and non-verbal behaviors); and (iv) challenges emerging as the implementation of the primary study unfolded and strategies adopted for their overcoming (e.g., family caregivers’ need to let off steam during family care conferences, thereby internal facilitator had to allow some deviations and then took back on the focus of the interview) interviews transcripts, the research dairy, and all inthe-field notes were uploaded in atlas.ti (version 6) for analysis. data analysis the data analysis consisted of two separate processes, whose findings were finally merged in a unique dataset. specifically, a deductive content analysis was employed to analyze interview transcripts (crabtree & miller, 1992; graneheim & lundman, 2004), while an inductive content analysis was used to analyze the research diary and in-thefield notes (graneheim & lundman, 2004; merriam, 2009). interview transcripts were analyzed by two independent researchers (ma and sg) who separately identified the relevant meaning units and attributed codes available in the pre-established matrix of analysis shared among the consortium (crabtree & miller, 1992; graneheim & lundman, 2004). when no codes fitted the identified meaning units, new codes were created. the others team members (pdg, sa and vd) provided feedback on the fit of codes. two researchers (ma and sg) individually coded the research diary and in-the-field notes by using an open coding process (merriam, 2009) based on content analysis (graneheim & lundman, 2004), then discussed and consolidated codes. codes were shared within the team and discussed until reaching a consensus for the final coding schema. finally, regardless of the initial process employed, all codes obtained were analysed comprehensively through an inductive approach (merriam, 2009). specifically, two researchers (ma and sg) gathered codes into categories and then categories into themes, based on similar meanings. after completing the initial analysis individually, they discussed and came to a consensus. the team assessed the fit of codes into categories and themes, made suggestions for further consolidation, and a consensus was finally achieved. ihtp, 2(2), 175-192, 2022 cc by-nc-nd 4.0 issn 2563-9269 179 data analysis and collection were iterative and occurred simultaneously. this allows continuous adjustment of the interview guide for depth exploration of emerging issues. emerging themes are cited using significant examples, which are identified by the source of information (interview/nh manager; interview/internal facilitator; interview/key informants; interview/family caregivers; research diary; and in-the-field notes). excerpts were agreed within the team. trustworthiness and authenticity trustworthiness refers to processes that assure accuracy of qualitative research and includes credibility, transferability, dependability, and confirmability (lincoln & guba, 1986; patton, 2014). this study sought to strengthen credibility through purposive sampling, different strategies of data collection (interview, research diary, and in-the-field notes), member checking, triangulation in data analysis, and regular face-to-face or online debriefing sessions between the internal and the external facilitator. regular meetings among internal facilitator, nh manager and key informants took place to share impressions about how study unfolded, emerging challenges and proactively identify strategies for their overcoming. to pursue transferability, reflexivity was promoted by regular documentation of project progresses and internal facilitator’s impression in the research diary. moreover, an audit trial was kept over the entire implementation process. the research team enhanced dependability of results using two coders who individually coded, then met to consolidate, and triangulation within the overall team. confirmability was pursued through quality checking of interview transcripts and exploring different perspectives (i.e., nh manager, internal facilitator, external facilitator, key informants, and family caregivers) about perceived barriers and opportunities from implementing the mysupport project. authenticity takes the influence of context into consideration by addressing fairness, ontological authenticity, educative authenticity, catalytic authenticity, and tactical authenticity (lincoln & guba, 1986; patton, 2014). fairness was looked for by considering the different, viewpoints to honor multiple parties and values in a balanced, impartial way. this research plans to arrive at a better care delivery after intervention tested in this qi project (i.e., family care conferences) would be routinely performed (ontological authenticity). in this study, educative authenticity concerns knowledge generation of what issues are being experienced as challenging while implementing the qi project; the involvement of several stakeholders, debriefings, and peer meetings helped to direct the key themes that this research addresses. catalytic authenticity concerns “the extent to which action is stimulated and facilitated by the research being carried out”. since knowledge in and of itself is insufficient to deal with the multitude of issues that participants arise during the research process, the findings generated from this qi project will also be published to help generate debate. tactical authenticity concerns whether the research empowered participants to take the action(s). participants’ testimonial would serve as the best indicator of tactical authenticity. for example, empowerment of family caregivers may be checked by looking at the documentation of advance care planning for their relative with advance dementia in clinical records; empowerment for nh staff delivering the qi intervention may be confirmed by how they were able to accommodate such intervention into their workload; and empowerment for nh leadership may be represented by the commitment and involvement in implementing the project. ethics considerations the ethics committee of the university of torino (italy) approved the study (reference 131362/5.3.2020). all participants including the two researchers who collected the data gave their written informed consent to participate in the study. ihtp, 2(2), 175-192, 2022 cc by-nc-nd 4.0 issn 2563-9269 180 participants who were involved in interviews, consented to be audio-recorded after being informed about the study purpose and data collection process, were free to participate and could stop the interview at any time and for any reason. a protocol to manage the onset of emotional distress during interviewing was available. moreover, transcriptions were anonymized for all sensitive information. results seventeen categories were identified and gathered into three themes that describe the early phases of mysupport project implementation in italian longterm care setting during covid-19 pandemic: (1) setting the stage; (2) adjusting the implementation plan to the context; and (3) being open to ongoing changes (table 1, figure 1). setting the stage before the factual implementation of qi projects in nh, preliminary assessments are needed to ascertain potential participants’ willingness to adhere to such projects. therefore, qi projects should be presented at multiple levels, including unit-level (i.e., colleagues) and organizational/system-level (i.e., nh leadership). “i’ve tested the waters among colleagues to understand their potential willingness to welcome the project.” (research diary) “the project needs to be presented at my workplace, first to the administrative and healthcare leadership, and then to my colleagues including nurses, nurses’ aides, psychologists, and educators.” (research diary) openness to change both at the unitand organizational/system-level as well as adequate training is pivotal to make qi projects take off. in this nh, being involved in mysupport project is perceived as an opportunity to improve the quality of care, discuss neglected topics (i.e., end-of-life care), and of education and reflection. training, both online and inperson, for all people involved in qi activities as well as self-education are perceived as essential to start qi projects. “[with such projects] we can improve the assistance of our patients and provide better patient-centred care.” (interview/internal facilitator) “[this project] allows us to reflect and confront with issues that are mostly neglected and denied.” (research diary) “this project moves across very thorny issues. experience is limited, it’s really challenging to daily deal with people at the end of life who are not fully aware of what is happening. being supported by material and people experienced in the field is a precious enrichment for all of us [...]. anyway, i believe that some difficulties may arise to persuade us all of how important this project is, make us become familiar with it, and introduce the project into our clinical practice. this should not been taken for granted. according to my experience, every time a new intervention is proposed there is always some resistance to change.” (interview/key informants) “i was surprised by the nh manager’s enthusiastic reaction, ‘how can we improve without research? she told me’.” (in-the-field notes) establishing partnerships at multiple levels with all stakeholders (i.e., family caregivers, team members, nh leadership, external facilitator, and university) can better ensure that qi projects find favourable conditions to take off, and then being sustained and spread over time. availability, collaboration, listening and sharing among family caregivers, nh staff and leadership is essential to initiate and support culture change. “the success will depend on family caregivers’ availability, their trust toward the facility and the staff.” (interview/internal facilitator) “this is a project that makes all of us professionally grow, so if we all commit ourselves we can get good results.” (interview/key informant) “the project is in line with the current and future priorities of the facility.” (interview/nh manager) establishing a partnership with external facilitators, it favors different perspectives to interface, thus promoting sharing of concerns and identification of strategies to address emerging challenges. such partnership has been based on both methodological and emotional support that external facilitator provided in training staff, navigating project ihtp, 2(2), 175-192, 2022 cc by-nc-nd 4.0 issn 2563-9269 181 documentation, selecting participants, and coping with obstacles while implementing the qi project. “together [the external facilitator and i] we concluded that i’ll have to accept the fears of family caregivers, let them off steam, welcome their outburst, and then bring the discussion back to the focus of the family care conference.” (research diary) “we discussed the strategies that i can adopt in the next family care conferences to not exceed 60 minutes, especially considering that this conference will become part of our routine within the working hours at the end of the project.” (research diary) finally, facility-university partnership is pivotal to start qi projects in nh. collaborative relationships and mutual exchange need to be established and it is useful that preliminary formal contacts usually by email communication -, are followed by informal, faceto-face meetings to know each other and lightly clarify doubts. “the project manager at the university of turin sent an invitation letter to my nh manager asking for our collaboration for the mysupport project.” (research diary) “today, the external facilitator and i have met the nh manager to unravel the last doubts relating to the start of the project, especially regarding the commitment required and the participants’ selection process.” (research diary) adjusting the implementation plan to the context qi projects are more likely to be successful when the implementation plan is adjusted to the organizational context. this means to engage all stakeholders, tailor modalities to approach participants and deliver qi activities, and manage both anticipated (e.g., time and resource constraints) and unanticipated (e.g., covid-19 pandemic) difficulties. the selection of the participants required sharing, negotiation and discussion within the team, and finally triangulation with the external facilitator and nh manager to achieve agreement and resolve doubts. “the same reasons that prompted me, the external facilitator and the nh manager to undoubtedly include this family caregiver in the project were instead perceived as an obstacle by my head nurse. after prolonged discussion we finally agreed on selected participants.” (research diary) potential participants were informed about the qi project by telephone, or in-person meeting and documentation provided on paper or by email, according to their preferences. qi activities were designed on participants’ needs with regard about the: i) modalities, by employing a bottom-up approach and personalizing family care conference according to participants’ awareness, training needs, and fears; and ii) timing, by scheduling the family care conference when family caregivers come to the facility to visit their relative. moreover, a welcoming setting with no potential sources of interruptions and/or distractions was identified. “i perceived a complete lack of awareness, highlighted by fears mostly related to the legal aspects and denial of issues of advanced dementia, therefore i decided to read written documentation point-by-point, then leaving space to the family caregivers for her impressions and doubts.” (research diary) “the family care conference took place in the psychologist’s office, a welcoming and quiet place, with no interruptions and distractions.” (research diary) implementing the qi project required participants to confront time and resource constraints, which were initially underestimated. then, also with the support of external facilitation, nh staff progressively learned to set aside time for the project, identified strategies to deliver family care conferences while keeping down times, and to some extent was available to work on the project in the free time. “finally, i managed to save a moment, but then i had to move following the numerous calls which had already arrived at my business mobile”. (research diary) “unfortunately, timing and resources within nursing homes are extremely limited to the point that it becomes difficult to think to conduct the study during ihtp, 2(2), 175-192, 2022 cc by-nc-nd 4.0 issn 2563-9269 182 working hours [...]. thus, i decided to conduct family care conferences in my free time to work on them with the right time and calm without any pressures.” (research diary) in addition to these difficulties which can be anticipated to some extent, the implementation plan had to be adjusted to sudden unanticipated challenges such as covid-19 pandemic. the pandemic i) affected training modalities with online training for both internal and external facilitators, ii) limited inperson contact between family caregivers and nh staff thus potentially threatening trusting relationships to be established, and iii) impacted the organization of the facility with a high nursing turnover. “the pandemic did not allow to strengthen those relationships of trust which usually develop over time between family caregivers and nh staff.” (research diary) “this year of pandemic has made relationships gone less because i have not had many contacts anymore [...]. they informed me but i could not interact anymore.” (interview/family caregiver) “the difficulties in recruiting staff with an almost total turnover of the nursing staff are clear signs of the transformation which has been taking place in the last year.” (in-the-field notes) “participants’ selection is going slowly due to the high workload of this period.” (in-the-field notes) being open to ongoing changes while implementing qi activities, confronting contrasting emotions both supportive and challenging is frequent and ongoing reflection is usually required, thus resulting in ongoing learning and changes. qi activities may be supported at multiple levels, including family caregivers, nh staff, nh leadership, and external facilitators. “i was extremely pleased to see how all the children of the resident were interested in the project and desired to understand how it worked.” (research diary) “i am enthusiastic with his [psychologist of the nh] interest and his willingness to support me along the way, also in approaching family caregivers and during family care conferences if needed.” (research diary) “in mysupport study, i’m an internal facilitator and feel supported and guided by x [external facilitator] in carrying out the project in my facility”. (research diary) “i feel reassured by nh manager’s support because i know that there is some possibility to sow some kind of cultural change which can be implemented and sustained in the future, also following the end of the initial project”. (interview/internal facilitator) instead, fear to not be enough prepared to deliver qi activities on thorny topics particularly when family caregivers distrust the nh or the staff, or contain family caregivers’ outburst, concerns of emotional involvement and increased workload, as well as difficulties in accepting criticism, emerged among the main challenging situations. “my concern is growing because i’m aware that it’ll certainly not be easy to sustain an end-of-life discussion with such a problematic daughter, who distrusts the facility and the care we are providing to her mum”. (research diary) “[during the interview] she [family caregiver] attributes her mum’s worsening to a “standardized” care. i must recognize that it has been not easy for me to accept this criticism.” (in-the-field notes) “i’m concerned about the increased workload and the high emotional burden which can result from end-of-life discussions with family caregivers.” (interview/internal facilitator) successful implementation of qi research activities requires ongoing, reflective practice since the early phases of implementation and continuous adjustments according to emerging findings and challenges. this process includes reflection on participants’ selection, how best tailoring qi activities, and regular debriefing to recognize opportunities to initiate qi improvement. moreover, ongoing reflection occurs at multiple levels including personal-, nh staff-, nh leadership-, and external ihtp, 2(2), 175-192, 2022 cc by-nc-nd 4.0 issn 2563-9269 183 facilitator-level. this leads to ongoing learning and improvement in the quality and reliability of the data collected (e.g., reduced amount of missed data after changes in the modality of data collection). “following the first family conference, i had debriefing with the external facilitator who attended the meeting in the background, to identify strengths and opportunity of improvement. among improvement strategies, we identified the synthesis of written information, particularly when family caregivers have some knowledge about end of life, and the adoption of a bottom-up approach starting mostly from family caregivers’ doubts and information needs.” (research diary) “after the external facilitator pointed out some missed data in the questionnaire to be filled in before the family conference and i made family caregivers complete just before the meeting, i decided to provide the questionnaire in advance, let family caregivers fill it at home and then return it at the following visit. in addition to reduce the risk of missed data due to perceived pressure, this modality prevents my presence from influencing the response since perceived family caregivers’ care quality is one of the topics explored.” (research diary) discussion this study identified the challenges encountered during the implementation of mysupport study in the italian long-term care setting during covid-19 pandemic and strategies employed for their overcoming. our findings suggest that to be successful, qi projects including nurse-led projects should (1) set the stage; (2) adjust the implementation plan to the context; and (3) be open to ongoing changes. our analysis showed early phases of the implementation process to have a key role in favouring success of qi activities. during these phases, preliminary assessments were performed to explore openness to change, training was provided, and partnerships were established at multiple levels. introducing evidence-based qi activities to enhance the quality of care is not merely a technical change as it also encompasses a cultural dimension (cohen et al., 2004). nhs have been suggested to have a strong ‘corporate culture’ which is defined as value-infused codes of behaviors, rituals, and language commonly held by all its employees (mannion & davies, 2018). this culture is dynamic and can be shaped to improve the quality of care for its residents (killett et al., 2016). therefore, exploring willingness to change both at the unitand system/organizational level as well as motivations to achieve the target can help to identify facilitating premises and overcome resistance. our findings suggest that when qi activities are perceived as an opportunity of education and reflection, this facilitates the implementation of qi projects, thus finally resulting in improved nh culture. adequate stakeholders’ training as well as their early engagement in qi activities has been confirmed as an effective implementation strategy (boyer et al., 2018; harrison et al., 2019). training has a key role in implementing, sustaining, and spreading qi activities (mills et al., 2019; rantz et al., 2012). when asked about facilitators to implementing qi projects, nh staff highlighted the importance of ensuring participants understand the rationale, expectations, and goals of implementation (mills et al., 2019). moreover, staff’s involvement in educational qi activities and qi committees, as well as plans of continuous education about qi process and how to do qi were demonstrated to sustain qi activities over time (rantz et al., 2012). engagement efforts promote the creation of partnerships which facilitate qi activities based on open dialogue and trusting, collaborative relationships (harrison et al., 2019). during the implementation of mysupport study, it was necessary to adjust the implementation plan to the organizational context and tailor the modalities to approach participants and deliver the qi activities. we approached participants in-person or over the phone and study material was provided on paper format or sent by mail. moreover, how (i.e., modalities) and when (i.e., timing) qi were delivered, it was personalized on each participant. a bottom-up approach was employed and qi activities (i.e., family care conferences) were tailored on participants’ awareness, education needs, and worries. this approach allows family caregivers to reflect on their lived experience and promote awareness in ethically challenging situations, such as when they must take decisions on behalf of their incapacitated relative ihtp, 2(2), 175-192, 2022 cc by-nc-nd 4.0 issn 2563-9269 184 with advanced dementia at the end of life (elliott, gessert, & peden‐mcalpine, 2009). qi projects are confronted with numerous challenges during the process of implementation and the success depends on the ability to manage both anticipated and unanticipated challenges (bail et al., 2020). our findings confirmed anticipated challenges of the nh context such as difficulties in finding time to implement qi activities, low staffing levels and high staff turnover (lam et al., 2018; temkin-greener, cen, & li, 2020). moreover, we had to content with covid19 pandemic which represented an unexpected challenge and required changes to the original implementation plan: training for the internal and external facilitator was delivered online, technologybased approaches were employed to reach family caregivers due to their decreased presence in the facility, and family care conferences had to be arranged in accordance with social distancing and personal protective equipment regulation. our experience showed that support from multiple individuals at different levels including family caregivers’ positive feedback, colleagues’ cooperation, and leadership support may help to overcome challenges when implementing qi projects, regardless they are anticipated or unanticipated (stetler et al., 2006). however, this happens only when trusting partnerships have been established at multiple levels since the early phases of the implementation process. the adoption of a regular reflective practice promoted openness to change, that in turn resulted in ongoing adjustments, and finally learning and improvement in the quality of data collected. indeed, changes in the modality of data collection after debriefing sessions led to less missing data. according to the kolb’s learning cycle, experience should be followed by a reflective process to be re-elaborated and new learning conceptualized. then, the skills acquired will translate into changed behaviours and modalities of thinking (kolb, 1984). similarly, schön highlights the relevance of reflection during the course of action, which emerges as meta-competence that generates new knowledge. when healthcare professionals reflect on their own action, they become able to overcome the sequential application of knowledge and experience reflection as means to emerge doubts and uncertainties (schon, 1984). one of the top key lessons we learnt from this study is the importance to adopt a multilevel approach throughout every stage of the implementation. during early phases, assessment of willingness to adhere to the project was performed at the nh staff-, nh leadership-, and family caregiverslevel, thus promoting early partnerships at multiple levels, as aforementioned. literature recognizes involvement of stakeholders at multiple levels as a systematic approach for any research project aimed at improving patient-centred care (boyer et al., 2018) and recommends that worthy involvement should be based on mutual respect, trust, and finally empowerment of all stakeholders (harrison et al., 2019). in our experience, the partnership between the internal and external facilitators was essential for the successful project implementation. this type of facilitation is known as blended facilitation and helps to identify barriers to implementation and develop strategies to overcome those obstacles by employing a 2-way process of relationship and skill building (pimentel et al., 2019), while enabling individuals and teams to reflect (stetler et al., 2006). also in our experience, this partnership emerged as a critical process of interactive problem-solving and support based on a constant reflective practice which promoted implementation change. similarly, ongoing engagement of the nh leadership based on both formal and regular, informal contacts had a pivotal role in the implementation process (pimentel et al., 2019; vogelsmeier et al., 2021). establishing partnership with leadership essential to promote culture change at the system-level and sustain and spread quality activities over the project itself or following its cessation. while individual and unit-level factors were suggested to influence success of the qi initiative, it was primarily organizational-level factors that influenced the extent of sustainability or spread of the intervention (cranley et al., 2018). the multilevel approach was maintained while adjusting the implementation plan to the context as suggested by confront at multiple level during the participants’ selection process (i.e., nh leadership, nh staff, and external facilitator), and during the ongoing reflective practice which resulted in continuous implementation changes and improvements by fostering co-learning of both stakeholders and researchers (boyer et al., 2018; harrison et al., 2019). ihtp, 2(2), 175-192, 2022 cc by-nc-nd 4.0 issn 2563-9269 185 strengths and limitations despite several strategies of data collection allowed to consider different perspectives, including family caregivers, the research diary and in-the-field notes provided the main contribution, because the interview guide was too structured to grasp detailed information. the short period of observation (four months) may have prevented from identifying obstacles that occur infrequently, such as changed government policies for nh staffing, salary of the nh personnel or changed nh leadership. the in-the-field notes though collected by two nurses with experience in elderly care could be very unlikely biased due to the continuous reflective practice and debriefing sessions between the internal and the external facilitator. finally, the study was conducted in a small and private nh, characteristics associated with an increased likelihood of success for qi research project (cranley et al., 2018). conclusions this study offers understanding of challenges in implementing nurse-led qi projects during times of crisis such as covid-19 pandemic, and potential strategies for their overcoming. our findings suggest that challenges may be anticipated such as time and resources constraints, or unanticipated as covid-19 pandemic. to increase the chance of success, qi projects should include preliminary assessments to identify the willingness to change and establish partnerships with all stakeholders, adjust the implementation plan to the context, and be open to ongoing changes. trusting partnerships at multiple levels which should be established since the early phases of the implementation process as well as an ongoing adjustment of the implementation plan to the organizational context may help to overcome both anticipated and unanticipated challenges. early and regular engagement of all stakeholders strengthen relationships, which become an essential source of support in difficult times. moreover, the adoption of an ongoing reflective practice throughout the entire implementation process promotes openness to change, continuous adjustments, and finally learning and improvement. references almost, j., wolff, a. c., stewart-pyne, a., mccormick, l. g., strachan, d., & d'souza, c. (2016). managing and mitigating conflict in healthcare teams: an integrative review. journal of advanced nursing, 72(7), 14901505. https://doi.org/10.1111/jan.12903 bail, k., merrick, e., redley, b., gibson, j., davey, r., & currie, m. (2020). “blind leading the blind”: qualitative evaluation of unanticipated difficulties during nurse testing of a hospital health information system. collegian, 27(1), 82-88. https://doi.org/10.1016/j.colegn.2019.03. 004 berlowitz, d. r., young, g. j., hickey, e. c., saliba, d., mittman, b. s., czarnowski, e., simon, b., anderson, j. j., ash, a. s., rubenstein, l. v., & moskowitz, m. a. (2003). quality improvement implementation in the nursing home. health services research, 38(1 pt 1), 65-83. https://doi.org/10.1111/14756773.00105 boyer, a. p., fair, a. m., joosten, y. a., dolor, r. j., williams, n. a., sherden, l., stallings, s., smoot, d. t., & wilkins, c. h. (2018). a multilevel approach to stakeholder engagement in the formulation of a clinical data research network. medical care, 56 suppl 10 suppl 1(10 suppl 1), s22s26. https://doi.org/10.1097/mlr.000000000000 0778 chen, a. t., ryskina, k. l., & jung, h. y. (2020). longterm care, residential facilities, and covid19: an overview of federal and state policy responses. journal of the american medical directors association, 21(9), 1186-1190. https://doi.org/10.1016/j.jamda.2020.07.00 1 cohen, d., mcdaniel, r. r., jr., crabtree, b. f., ruhe, m. c., weyer, s. m., tallia, a., miller, w. l., goodwin, m. a., nutting, p., solberg, l. i., zyzanski, s. j., jaén, c. r., gilchrist, v., & stange, k. c. (2004). a practice change model for quality improvement in primary care practice. journal of healthcare management, 49(3), 155-168; discussion 169-170. crabtree, b. f., & miller, w. f. (1992). a template approach to text analysis: developing and using codebooks. in b.f. crabtree & w.f. https://doi.org/10.1111/jan.12903 https://doi.org/10.1016/j.colegn.2019.03.004 https://doi.org/10.1016/j.colegn.2019.03.004 https://doi.org/10.1111/1475-6773.00105 https://doi.org/10.1111/1475-6773.00105 https://doi.org/10.1097/mlr.0000000000000778 https://doi.org/10.1097/mlr.0000000000000778 https://doi.org/10.1016/j.jamda.2020.07.001 https://doi.org/10.1016/j.jamda.2020.07.001 ihtp, 2(2), 175-192, 2022 cc by-nc-nd 4.0 issn 2563-9269 186 miller (eds.), doing qualitative research in primary care: multiple strategies (pp.93109). sage publications. cranley, l. a., hoben, m., yeung, j., estabrooks, c. a., norton, p. g., & wagg, a. (2018). scopeout: sustainability and spread of quality improvement activities in long-term carea mixed methods approach. bmc health services research, 18(1), 174. https://doi.org/10.1186/s12913-018-2978-0 elliott, b. a., gessert, c. e., & peden‐mcalpine, c. (2009). family decision‐making in advanced dementia: narrative and ethics. scandinavian journal of caring sciences, 23(2), 251-258. https://doi.org/10.1111/j.14716712.2008.00613.x graneheim, u. h., & lundman, b. (2004). qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. nurse education today, 24(2), 105-112. https://doi.org/10.1016/j.nedt.2003.10.001 harrison, j. d., auerbach, a. d., anderson, w., fagan, m., carnie, m., hanson, c., banta, j., symczak, g., robinson, e., schnipper, j., wong, c., & weiss, r. (2019). patient stakeholder engagement in research: a narrative review to describe foundational principles and best practice activities. health expectations, 22(3), 307-316. https://doi.org/10.1111/hex.12873 jackson, j. e. (2019). "i am a fieldnote": fieldnotes as a symbol of professional identity. in r. sanjek (ed.), fieldnotes: the making of anthropology (pp. 3-33). cornell university press. janssens, k. a., bos, e. h., rosmalen, j. g., wichers, m. c., & riese, h. (2018). a qualitative approach to guide choices for designing a diary study. bmc medical research methodology, 18(1), 1-12. https://doi.org/10.1186/s12874-0180579-6 jenkins, c., smythe, a., galant-miecznikowska, m., bentham, p., & oyebode, j. (2016). overcoming challenges of conducting research in nursing homes. nursing older people, 28(5), 16-23. https://doi.org/10.7748/nop.28.5.16.s24 joling, k. j., janssen, o., francke, a. l., verheij, r. a., lissenberg-witte, b. i., visser, p. j., & van hout, h. p. j. (2020). time from diagnosis to institutionalization and death in people with dementia. alzheimer's & dementia : the journal of the alzheimer's association, 16(4), 662-671. doi:10.1002/alz.12063 kezirian, a. c., mcgregor, m. j., stead, u., sakaluk, t., spring, b., turgeon, s., slater, j., & murphy, j. m. (2018). advance care planning in the nursing home setting: a practice improvement evaluation. journal of social work in end-of-life & palliative care, 14(4), 328-345. https://doi.org/10.1080/15524256.2018.15 47673 killett, a., burns, d., kelly, f., brooker, d., bowes, a., la fontaine, j., latham, i., wilson, m., & o'neill, m. (2016). digging deep: how organisational culture affects care home residents' experiences. ageing & society, 36(1), 160-188. https://doi.org/10.1017/s0144686x140011 11 kolb, d. a. (1984). experience as the source of learning and development. prentice hall. kong, e.h., kim, h., & kim, h. (2021). nursing home staff’s perceptions of barriers and needs in implementing person-centred care for people living with dementia: a qualitative study. journal of clinical nursing. doi: 10.1111/jocn.15729. [epub ahead of print]. lam, h. r., chow, s., taylor, k., chow, r., lam, h., bonin, k., rowbottom, l., & herrmann, n. (2018). challenges of conducting research in long-term care facilities: a systematic review. bmc geriatrics, 18(1), 242. https://doi.org/10.1186/s12877-018-0934-9 lincoln, y. s., & guba, e. g. (1986). but is it rigorous? trustworthiness and authenticity in naturalistic evaluation. new directions for program evaluation, 1986(30), 73-84. https://doi.org/10.1002/ev.1427 maas, m. l., kelley, l. s., park, m., & specht, j. p. (2002). issues in conducting research in nursing homes. western journal of nursing research, 24(4), 373-389. https://doi.org/10.1177/019459020240040 06 mannion, r., & davies, h. (2018). understanding organisational culture for healthcare quality improvement. british medical journal, 363, k4907. https://doi.org/10.1136/bmj.k4907 https://doi.org/10.1186/s12913-018-2978-0 https://doi.org/10.1111/j.1471-6712.2008.00613.x https://doi.org/10.1111/j.1471-6712.2008.00613.x https://doi.org/10.1016/j.nedt.2003.10.001 https://doi.org/10.1111/hex.12873 https://doi.org/10.1186/s12874-018-0579-6 https://doi.org/10.1186/s12874-018-0579-6 https://doi.org/10.7748/nop.28.5.16.s24 https://doi.org/10.1080/15524256.2018.1547673 https://doi.org/10.1080/15524256.2018.1547673 https://doi.org/10.1017/s0144686x14001111 https://doi.org/10.1017/s0144686x14001111 https://doi.org/10.1186/s12877-018-0934-9 https://doi.org/10.1002/ev.1427 https://doi.org/10.1177/01945902024004006 https://doi.org/10.1177/01945902024004006 https://doi.org/10.1136/bmj.k4907 ihtp, 2(2), 175-192, 2022 cc by-nc-nd 4.0 issn 2563-9269 187 merriam, s. (2009). qualitative research: a guide to design and implementation. john willey & sons inc. mills, w. l., pimentel, c. b., snow, a. l., allen, r. s., wewiorski, n. j., palmer, j. a., clark, v., roland, t. m., mcdannold, s. e., & hartmann, c. w. (2019). nursing home staff perceptions of barriers and facilitators to implementing a quality improvement intervention. journal of the american medical directors association, 20(7), 810815. https://doi.org/10.1016/j.jamda.2019.01.13 9 miralles, o., sanchez-rodriguez, d., marco, e., annweiler, c., baztan, a., betancor, é., cambra, a., cesari, m., fontecha, b. j., gąsowski, j., gillain, s., hope, s., phillips, k., piotrowicz, k., piro, n., sacco, g., saporiti, e., surquin, m., & vall-llosera, e. (2021). unmet needs, health policies, and actions during the covid-19 pandemic: a report from six european countries. european geriatric medicine, 12(1), 193-204. https://doi.org/10.1007/s41999-020-00415x mysupport study. scaling up the family carer decision support intervention: a transnational effectiveness-implementation evaluation. 2019–2022. https://mysupportstudy.eu. (accessed 10 february 2022). morley, j. e., caplan, g., cesari, m., dong, b., flaherty, j. h., grossberg, g. t., holmerova, i., katz, p. r., koopmans, r., little, m. o., martin, f., orrell, m., ouslander, j., rantz, m., resnick, b., rolland, y., tolson, d., woo, j., & vellas, b. (2014). international survey of nursing home research priorities. journal of the american medical directors association, 15(5), 309-312. https://doi.org/10.1016/j.jamda.2014.03.00 3 ng, r., lane, n., tanuseputro, p., mojaverian, n., talarico, r., wodchis, w. p., . . . hsu, a. t. (2020). increasing complexity of new nursing home residents in ontario, canada: a serial cross-sectional study. journal of the american geriatrics society, 68(6), 12931300. doi:10.1111/jgs.16394 patton, m. q. (2014). qualitative research & evaluation methods: integrating theory and practice. sage publications. pawluch, d. (2005). qualitative analysis, sociology. in k. kempf-leonard (ed.), encyclopedia of social measurement (pp. 231-236). elsevier. pimentel, c. b., mills, w. l., palmer, j. a., dillon, k., sullivan, j. l., wewiorski, n. j., snow, a. l., allen, r. s., hopkins, s. d., & hartmann, c. w. (2019). blended facilitation as an effective implementation strategy for quality improvement and research in nursing homes. journal of nursing care quality, 34(3), 210. https://doi.org/10.1097/ncq.00000000000 00376 pivodic, l., smets, t., van den noortgate, n., onwuteaka-philipsen, b. d., engels, y., szczerbińska, k., finne-soveri, h., froggatt, k., gambassi, g., deliens, l., & van den block, l. (2018). quality of dying and quality of end-of-life care of nursing home residents in six countries: an epidemiological study. palliative medicine, 32(10), 1584-1595. https://doi.org/10.1177/026921631880061 0 rantz, m. j., zwygart-stauffacher, m., flesner, m., hicks, l., mehr, d., russell, t., & minner, d. (2012). challenges of using quality improvement methods in nursing homes that "need improvement". journal of the american medical directors association, 13(8), 732-738. https://doi.org/10.1016/j.jamda.2012.07.00 8 sandelowski, m. (2000). whatever happened to qualitative description? research in nursing & health, 23(4), 334-340. https://doi.org/10.1002/1098-240x schon, d. a. (1984). the reflective practitioner: how professionals think in action. basic books. schonfeld, t.l., stevens, e.a., lampman, m.a., & lyons, w.l. (2012). assessing challenges in end-of-life conversations with elderly patients with multiple morbidities. american journal of hospice and palliative care, 29(4), 260-267. doi: 10.1177/1049909111418778. snowden, m. (2015). use of diaries in research. nursing standard, 29(44), 36. https://doi.org/10.7748/ns.29.44.36.e9251 https://doi.org/10.1016/j.jamda.2019.01.139 https://doi.org/10.1016/j.jamda.2019.01.139 https://doi.org/10.1007/s41999-020-00415-x https://doi.org/10.1007/s41999-020-00415-x https://doi.org/10.1016/j.jamda.2014.03.003 https://doi.org/10.1016/j.jamda.2014.03.003 https://doi.org/10.1097/ncq.0000000000000376 https://doi.org/10.1097/ncq.0000000000000376 https://doi.org/10.1177/0269216318800610 https://doi.org/10.1177/0269216318800610 https://doi.org/10.1016/j.jamda.2012.07.008 https://doi.org/10.1016/j.jamda.2012.07.008 https://doi.org/10.1002/1098-240x https://doi.org/10.7748/ns.29.44.36.e9251 ihtp, 2(2), 175-192, 2022 cc by-nc-nd 4.0 issn 2563-9269 188 stetler, c. b., legro, m. w., rycroft-malone, j., bowman, c., curran, g., guihan, m., hagedorn, h., pineros, s., & wallace, c. m. (2006). role of "external facilitation" in implementation of research findings: a qualitative evaluation of facilitation experiences in the veterans health administration. implementation science, 1, 23. https://doi.org/10.1186/1748-5908-1-23 temkin-greener, h., cen, x., & li, y. (2020). nursing home staff turnover and perceived patient safety culture: results from a national survey. the gerontologist, 60(7), 1303-1311. https://doi.org/10.1093/geront/gnaa015 teno, j.m., clarridge, b.r., casey, v., welch, l.c., wetle, t., shield, r., & mor. v. (2004). family perspectives on end-of-life care at the last place of care. journal of the american medical association, 291(1), 88-93. doi: 10.1001/jama.291.1.88. toles, m., colón-emeric, c., moreton, e., frey, l., & leeman, j. (2021). quality improvement studies in nursing homes: a scoping review. bmc health services research, 21(1), 803. https://doi.org/10.1186/s12913-021-068038 tong, a., sainsbury, p., & craig, j. (2007). consolidated criteria for reporting qualitative research (coreq): a 32-item checklist for interviews and focus groups. international journal for quality in health care, 19(6), 349-357. https://doi.org/10.1093/intqhc/mzm042 vogelsmeier, a., popejoy, l., canada, k., galambos, c., petroski, g., crecelius, c., alexander, g. l., & rantz, m. (2021). results of the missouri quality initiative in sustaining changes in nursing home care: six-year trends of reducing hospitalizations of nursing home residents. the journal of nutrition, health & aging, 25(1), 5-12. https://doi.org/10.1007/s12603-020-1552-8 white, e. m., wetle, t. f., reddy, a., & baier, r. r. (2021). front-line nursing home staff experiences during the covid-19 pandemic. journal of the american medical directors association, 22(1), 199-203. https://doi.org/10.1016/j.jamda.2020.11.02 2 https://doi.org/10.1186/1748-5908-1-23 https://doi.org/10.1093/geront/gnaa015 https://doi.org/10.1186/s12913-021-06803-8 https://doi.org/10.1186/s12913-021-06803-8 https://doi.org/10.1093/intqh https://doi.org/10.1007/s12603-020-1552-8 https://doi.org/10.1016/j.jamda.2020.11.022 https://doi.org/10.1016/j.jamda.2020.11.022 ihtp, 2(2), 175-192, 2022 cc by-nc-nd 4.0 issn 2563-9269 189 table 1: codes, categories, and themes themes categories codes setting the stage preliminary assessments testing the waters assessing the willingness of potential participants to welcome the project awareness that starting the project will not be easy openness to change willingness to change by nh management willingness to change by the nh team participation to research projects as opportunity of education participation to research projects as opportunity to improve the quality of care participation to research projects as opportunity to discuss neglected topics participation to research projects as opportunity of reflection training training to conduct the project training of the internal facilitator training of the external facilitator online training perceived as useful face-to-face training self-education activities establishing a partnership with family caregivers and their familiar network family caregivers’ availability establishing trusting relationships between staff and family caregivers understanding the distrust and powerlessness perceived by family caregivers letting family caregivers off steam welcoming family caregivers’ outburst giving family caregivers room to raise concerns and ask questions reassuring family caregivers avoiding to create barriers putting yourself in a condition of observation and listening feeling to have a family role during the pandemic feeling to be the reference healthcare professional for decision making establishing a partnership with the working team confronting with the working team to outline the role of each in the project presenting the project to the colleagues establishing a partnership with the nursing home management presenting the project to the nh administrative leadership presenting the project to the nh healthcare leadership providing clarifications to the nh leadership to facilitate the start of the project clarifying the potential impact of the project to the nh leadership triangulation internal facilitator-external facilitator-nh manager to clarify doubts establishing a partnership with the external facilitator regular meetings between internal facilitator and external facilitator sharing concerns with the external facilitator feeling clarified about the project after discussing with the external facilitator confront between internal facilitator and external facilitator as stimulus of new perspectives external facilitator’s presence during family care conferences discussing potential strategies to overcome time constraints with the external facilitator ihtp, 2(2), 175-192, 2022 cc by-nc-nd 4.0 issn 2563-9269 190 ongoing external facilitator’s guidance and support external facilitator’s support in navigating project documentation external facilitator’s support to address issues arising with family caregivers establishing a partnership between nursing home and university soliciting the nh manager to answer the invitation to participate to the project promoting nh-university partnership adjusting the implementation plan to the context confronting to select participants confronting within the team to select participants discussing with the external facilitator and the nh manager about participants’ selection achieving agreement within the team on selected participants factors perceived at the same time as facilitators and obstacles of participants’ selection according to different perspectives believing that the project may be more useful for some family caregivers than others tailoring modalities to approach participants preliminary telephone contacts to illustrate the project in-person presentation of the project sending project-related documentation by email tailoring the delivery of quality improvement activities to participants scheduling meetings with family caregivers on the occasion of their scheduled visits to the relative adopting a bottom-up approach (i.e., starting from participants’ doubts/needs) individualizing quality improvement activities based on particiapnts’ awareness and fears personalizing data collection methods intervention delivery facilitated by participants’ awareness respect of the times facilitated by participants’ awareness choosing the right place identifing a suitable place to conduct the family care conferences guaranteeing privacy avoiding external interruptions managing time and resource constraints participants’ selection process hindered by high workload underestimating the obstacle of time issues in conducting the project lack of time to design family care conferences inability to carry the project out during working timetable due to limited resources delivering family care conferences out of the working timetable setting aside time for moving forward with the project summarizing written information to keep the schedule confronting with covid19 pandemic online training missed opportunity of in-person meetings with family caregivers massive nursing turnover during covid-19 pandemic family caregivers-staff relationships threatened by the pandemic participants’ selection process hindered by their limited attendance at the facility being open to ongoing changes supportive emotions feeling pleased by family caregivers’ interest in the project feeling pleased by colleagues’ interest in the project feeling supported by colleagues feeling supported by the nh manager’s support feeling more prepared after confronting with the external facilitator challenging emotions feeling worried feeling unprepared to conduct quality improvement activities on thorny ihtp, 2(2), 175-192, 2022 cc by-nc-nd 4.0 issn 2563-9269 191 topics such as end-of-life care experiencing difficulties to accept family caregivers’ criticism fear to be emotionally involved fear to not be able to limit family caregivers’ outburst during family care conferences fear to not be able to conduct family care conferences with ‘difficult’ family caregivers fear of increased workload ongoing reflective practice and learning doubting about participants’ selection process doubting about selected participants after confronting with colleagues experienced colleagues’ perspective as source of reflection ongoing reflection on how tailoring the intervention need of ongoing sharing within the team to reach agreement need to reflect to reach agreement debriefing within the team after family care conferences debriefing with the external facilitator after family care conferences reduced missed data reduced potential influence of healthcare professionals ihtp, 2(2), 175-192, 2022 cc by-nc-nd 4.0 issn 2563-9269 192 figure 1: diagrammatic presentation of relationship between codes, categories, and themes 124 ihtp, 2(3), si: 124-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 rise against the machine: creating global health for vulnerable populations through child nutrition special issue: planetary health meryl fury1, carrie bruno1, ashok nagella2 1plant based nutrition movement, inc, pbnm.org; 2life stance health corresponding author: m. fury (merylfury@pbnm.org) abstract there has been much talk about the connection between global north food systems, health, and climate change. however, very little action has been taken that has made a measurable difference. the authors propose a novel view of the structure of our food system and what we can do to mitigate its impact on the environment, health, and vulnerable populations, with our children being the most vulnerable of all. finally, a detailed outline of a viable solution is provided. keywords child, global health, health, nutrition, vulnerable populations introduction these are dangerously different and unprecedented times. so much so that many humans feel our planet is getting hotter (grant, 2019). the documented changes in temperatures have seen reduced extent of arctic sea ice, which contributes to sea-level rise, and increasing ocean heat content, and ocean heat waves. furthermore, the melting rate of ocean-terminating glaciers and ice sheets around greenland and antarctica is higher than it has been since the national oceanic and atmospheric administration began keeping records in 1979 (noaa, n.d.). additionally, species extinction rates are perhaps 1000 times higher than the natural baseline (extinction, n.d.; iucn, n.d.). successive waves of pandemics threaten to devastate the human population (cdc, 2018). along with the acute causes of death, chronic illnesses continue to claim lives, and their diagnosis rates are trending upwards all over the world (cdc, 2022; kauffman, 2020; nami, 2022; abdalla et al., 2020). in the united states of america (usa), the millennial generation (those born between 1981 and 1996) is the first to have a shorter life expectancy than the generation before. in 2015, the us center for disease control (cdc) pointed to rising rates of suicide, drug overdoses, and liver disease as the primary factors contributing to decreased lifespan (devitt, 2018). in 2021, the cdc added the covid-19 pandemic to the list of causes (arias et al., 2021). interestingly, through a sort of learned helplessness, or cultural disempowerment, with media outlets reporting the decrease in us life expectancy as fact, the average citizen may see this shortening of life expectancy as incontrovertible. many may also tend to see the decreased life span in isolation from other concurrent, connected issues such as food system inadequacies, health care inequities, correlations with emotional and physical illness, and overall planetary health. this is a myopic ihtp, 2(3), si: 124-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 125 perspective that causes most people to think small. this distorted view makes it almost impossible to devise creative, powerful, and effective, global solutions. the propensity to view problems in isolation is common in global north societies which tend to follow "if a then b" thought processes and often stop the logical proof right there. this reductionist style of thinking comes from a lack of a broader perspective. that lack of perspective stops us from seeing the interconnections between the various aspects of the challenges we face. as a result, we focus on narrow solutions to tackle single facets of enormous, multidimensional, global problems. we layer humanmade interventions on top of broken systems, often worsening the very problems we are trying to remedy. we look for quick fixes for long-standing problems, and those fixes fall short almost every time. the fix will frequently deliver a profit to some individual or group, and sadly, while one individual or group profits, others will become collateral damage, suffering worse outcomes because of the chosen intervention (campbell, 2022). for example, consider concentrated animal feeding operations, heavy pesticide and herbicide usage, and gmo farming patterns and current fish harvesting practices (aquaculture) (baluyut, 1989). all of these began as ways to streamline business, create efficiencies, increase yield, and maximize profit. however, after years of observing the consequences of these business methods, little attention has been given to the impact these types of business models would have on neither the animals nor the environment, nor the people that do the work. however, if we view the issues as they are, interrelated, we can see that all circumstances are connected. when seen as interconnected, nothing exists in isolation, and it becomes evident that all actions have a multitude of consequences. as zen buddhist teacher, thich nhat hanh taught in "the river of mind" dharma talk, in 2011, the true nature of all being is "inter-being," meaning we are all deeply connected in very subtle and fundamental ways (to be, 2021). to be is to “inter-be.” all things "inter-are" with everything else. humans, non-humans, plants, sun, water, air, fire, and planet all “inter-are”. animate and inanimate, none would exist without the other. therefore, for our interventions to be most effective, we must look for answers that address the root cause(s) of the problem. we must assess the intervention by asking, “does it render the greatest good?” as opposed to “is it the quickest, or the simplest, or the one with the most favorable costbenefit or profit margin?” or "is it the one that keeps me most comfortable regardless of its uncalculated effects elsewhere?" we are currently in an existential quandary of global proportions impacting not only human but also beyond-human species, and planetary health. that is, we “inter-are” in this crisis. furthermore, because our current animal-centric food production system is believed to contribute 27 to 39 percent of anthropogenic greenhouse gas emissions, it has an undeniable, excitatory effect on the situation (foa, 2021). with food as the catalyst, humans are continually adding to the above-mentioned constellation of problems which we are trying to solve. because our eating patterns drive demand for and production of certain foods which have a negative impact on the planet, the problem grows in severity every time we eat animal products. we do not often consider it, but sadly, our children are both victims and accomplices in the growth of this crisis (wang et al., 2021). yet, children also hold incredible potential energy to help solve the problem. purpose humans in the global north have inadvertently created a massive problem for the planet. our relentless pursuit of cheap, convenient, protein-rich foods, combined with an insatiable appetite for financial gain has led us to invent and adhere to agricultural methods that prioritize high yield, animalbased foods over human health, animal welfare, ecosystem preservation, and climate impact. this is the myopic view that has brought us to the point where individual citizens have given up hope of corporate conscience or governmental rescue and instead, feel compelled to do what they can individually to save the planet. to authentically confront with intent to resolve the global problem we humans have helped create, we, the authors of this article, are making a provocative assertion. we assert that if humans want any chance to avert or even slow the impending ihtp, 2(3), si: 124-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 126 existential crisis, first, we must look deeply at the unexamined effects of our eating patterns. then, we must transform how we feed our children in the global north. this unique proposition will be further illustrated in the coming paragraphs. to that end, the purpose of this paper is to connect the dots that tell the story of how we feed our children. we will look at how eating patterns affect a child's physical and emotional health, as well as their growth, development, and academic abilities, including how they drive the health of the family, community, and society. we will also examine what we can do to transform child nutrition such that it becomes a fulcrum to attain a 50% decrease in greenhouse gas emissions by 2040. this paper will also detail a novel approach to educating children, parents/caregivers, educators, and healthcare professionals, so they can fully grasp the short and long-term implications of children's food choices and can collaborate to transform our foodways. moving children's eating habits toward more plant-based patterns will affect the whole family's health and, ultimately, that of the entire planet and all its inhabitants, as will be explained in the following paragraphs. discussion children have neither autonomy nor agency. because of this, they are our most vulnerable human population. this is true regardless of socioeconomic status, race, ethnicity, parents' education levels, language, and country of origin. they are always at the mercy of the people and environment around them. one of the biggest issues children faces is access to genuinely healthy food. by that, we mean food that supports their growth and development, as well as the health of the planet. the data shows that in the usa, children are very poorly fed (wang et al., 2021). we assert that this one fact has far-reaching consequences, even in other countries. human society, animals, plants, and the entire planet suffer as a result. even though they are our most vulnerable population, children have more influence than we realize when it comes to food choices. for example, their food preferences shape the grocery shopping list for their families. because of this, children in the usa hold undeniable purchasing power. they exercise their strength by pestering their parents into buying what they want. the machine the reader may have heard of "economic engines," a concept fully described in jim collins' book, good to great: why some companies make the leap and others don't (collins, 2001). an economic engine can be defined as a metric used to both build and assess a company's success. simply put, since a company's success is typically related to profit, an economic engine can be defined as what brings in money. with that, we will draw this analogy. there is an economic engine that creates and accelerates poor health and planetary deterioration. marketing of our food economy fuels the engine, accelerating sickness in all living things and fomenting the planet's destruction. in fact, 8 out of the top 20 contributors to greenhouse gas emissions come from the agricultural sector, according to project drawdown research (project drawdown, 2019). the economic engine has gears. each gear has inputs, outputs, and by-products. consider this: engine gear 1 marketers all over the world know that children's food preferences define their food choices. children's food choices and preferences strongly influence the family's eating patterns (suwandinata, 2011). the family's eating patterns define their grocery purchases. the grocery purchases determine food demand and production. food demand and production inform food marketing. in the usa, food marketing has a tremendous influence on children's food preferences and marketers and manufacturers take full advantage of that when advertising to children and adolescents. and round and round in an endless cycle. unfortunately, for the consumer, food manufacturers are not only marketing heavily to children, but they are also looking for maximum profit on their investments (leibowitz et al., 2012). one of the surest ways to increase financial gain is to ihtp, 2(3), si: 124-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 127 decrease costs by using less expensive, poorer quality, and addictive ingredients (moss, 2013). furthermore, using formulations with addictive ingredients cements the relationship, ensuring loyal buyers. this unending search for higher returns on investment has resulted in a downward spiral in food quality and an upward spiral in addictive ingredients and laboratory determined ingredient combinations, including salt, sugars, and fats, especially in the foods marketed to children (moss, 2013). this appears to be true regardless of its adverse effects on the population while they are still young and as they age. in 2017, the university of connecticut rudd center for food policy and health analyzed nielsen data and determined that food companies spend about $14 billion annually on food marketing (harris et al., 2019). a federal trade commission report from 2012 indicated that food companies can spend as much as $1.8 billion annually on marketing explicitly targeting children and adolescents (leibowitz et al., 2012). furthermore, a us study conducted in 2013 found that about 84% of all promotional materials seen by children encouraged them to eat nutrient-poor, highly processed, sweetened drinks, candy, unhealthy snacks, and fast food containing high levels of saturated fat, sugars, or sodium and little else (food marketing, n.d.). another study conducted in canada in 2020 found that adolescents are prime targets for food advertisements because of their purchasing power (pinto et al., 2020). in the usa, advertising for these foods is ubiquitous. it is prominent on all electronic and print media platforms, in schools, at sporting events, and in music. our children are awash in this torrent of advertising. when the ads are combined with youthful impressionability and impulsivity, children beg their parents for these products, and parents generally comply. the purchase and consumption of these low-quality refined food products have led to soaring rates of lifestyle diseases such as obesity, diabetes, and hypertension in the whole family (cdc, 2022). this turning wheel of causes and effects adds power to engine gear 2 marketing increases the demand for and promotes the normalization of eating poor-quality, highly processed junk foods and animal products, also called the standard american diet (sad). the sad has been shown by extensive scientific data to reliably lead to chronic illness (standard american, n.d.; the scientific, 2021). chronic illness causes a consistent and common decline in human health. this consistent and common decline leads the general population to normalize, accept and expect illness over the lifespan. our expectations restrict what we are willing to consider as possible solutions. the possible solutions that we consider are influenced and even limited by marketing. marketing persuades us to believe that the sad is fixed (meaning it is not changing), beneficial (meaning it is cheap to produce and purchase, quick to eat, easy to obtain, and good tasting), normal (meaning it is standard, typical, and harmless to eat) and health-promoting (meaning it is high in protein and has added vitamins and minerals). both gear 1 and 2 increase torque for engine gear 3 food choices in the usa affect eating patterns worldwide. eating patterns worldwide are swayed through marketing and exportation of alluring, labengineered, low-cost, hyper-palatable, genetically modified organisms (gmos), animal-based, and refined food-like substances, increasing the demand for them. the increased demand for refined food likesubstances feeds the growth of that market. the growing market for refined food-like substances leads farmers to produce the raw materials for those foodlike substances to cash in on the increasing demand. to cash in on the increasing demand, farmers try to produce as much as possible to maximize their return and profit. one of the ways to assure the highest possible crop yield is to grow genetically engineered cash crops that are designed to withstand high volumes of herbicides. since the gmo cash crops can withstand herbicides while the weeds and other undesirable plants cannot, farmers tend to use the everincreasing amounts of fertilizers (to stimulate growth) and herbicides like glyphosate (to kill weeds) (unep, 2021). the use of herbicides creates an evolutionary pressure for the weeds to develop a resistance to the ihtp, 2(3), si: 124-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 128 poisons, leading to more use of gmos and herbicides (perry et al., 2016). a similar pathway occurs in animal agriculture where farmers look for the most cost-effective method to grow animals for food. the most economical way includes the use of gmo feeds, antibiotics, and growth hormones to stimulate livestock growth (gmos, 2019) (hughes & heritage, n.d.) (stewart, 2017). this leads to the increased production and consumption of gmos (for farm animals) and animal-based foods (for humans). excessive fertilizer and chemical use combined with the increasing production of gmos and high concentration animal-based farming are all identified causes of ecosystem degradation, loss of biodiversity, and planetary destruction (swinburn et al., 2019). in other words, looking at the output of engine gears 1, 2, and 3: our children's eating patterns directly affect their health and the health of the planet. therefore, it follows that we can alter the course of both by educating about and changing what our children eat. not only that, but we could transform the health of the entire human population, increase life expectancy, decrease animal suffering, and significantly reduce greenhouse gas production by transforming what we feed children in the usa (philipsborn, 2022). just as children are taught basic manners, hygiene, and how to read and write from a very young age, and these habits/skills carry over into adulthood, the authors are assuming that children who are taught to eat healthy foods before the age of 13 will likely adhere to that way of eating long-term (movassagh, 2017). there is a fourth gear in this machine. its outputs are simultaneously difficult and easy to see. these outputs quietly undermine human potential in the usa as effectively as they destroy human health. moreover, this gear is uniquely detrimental because it simultaneously feeds into and sucks the life out of specific races and ethnicities, even as it contributes to their ever-growing vulnerable status. engine gear 4 black, brown, and low-income people often live concentrated in low-income areas. low-income neighborhoods are often also food deserts or food swamps. food deserts have no grocery stores within 1-mile walking distance, and food swamps frequently have higher than the typical number of poor quality, processed, or fast-food establishments (cooksey et al., 2020; dutko et al., 2012). people in food deserts frequently eat what is available nearby in their neighborhoods, i.e. processed and fast foods. predictably, when an entire community has an eating pattern high in processed and fast foods, it leads to higher rates of chronic physical and mental health issues within that community. higher rates of physical and mental health issues are detrimental to the community as a whole and impede individual community members' abilities to earn a living wage (cdc, 2019). the inability to earn a living wage leads to an increased need for and use of government food assistance programs for single adults, families, and children in schools. school food programs are a form of governmental food assistance programs. schools provide poor-quality food such as dairy products, processed meats, and other processed foods high in salt, sugar, and fat. (eber, 2019). poor food quality is associated with below-average academic performance and poor health (oberst, 2022). poor food quality, poor health, and below-average academic performance are all associated with decreased self-esteem, increased behavior problems, depression, anxiety, and anger. over time, decreased self-esteem, increased behavior problems, depression, anxiety, and anger in school children can eventually lead school administrators to take disciplinary actions, which may include suspension, expulsion, and even arrest. arrests and disciplinary actions increase the child's likelihood of dropping out and potentially engaging with more police involvement (gleit, 2022). police involvement leads to decreased ability to get a stable job and earn a living wage. without a stable job and living wage, it is almost impossible to contribute to family and society using legal pathways. limited access to legal means to support oneself leads to desperation with increased anti-social/criminal behavior. anti-social/criminal behavior leads to ihtp, 2(3), si: 124-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 129 increased societal mistrust and stereotyping of the low-income population. because the population is easily associated with or identified by physical characteristics like skin color, their behaviors reinforce racist beliefs and solidify systemic racism against all members of the racial or ethnic group. systemic racism against all members of the racial or ethnic group, along with other issues, including low educational levels and low earning ability, support the growth of impoverished black and brown neighborhoods. in addition to all this, the vulnerable populations noted above are the political minorities that suffer the most deprivation in terms of access to healthy food and adequate healthcare in the usa (cdc, 2021). they are also the groups most frequently targeted by fast-food advertising (harris et al., 2021). for many, the tightly woven fabric consisting of disparities in the quality of their living environment, minimal access to safe outdoor spaces, lack of nutritious food, and inadequate education supporting the adoption of healthy lifestyle habits delivers the worst health outcomes and leads directly to an early grave. this is particularly true for low socioeconomic status african americans and native americans (cdc, 2021). as stated above, political minorities and those with low socioeconomic status are at the highest risk for poor health outcomes. in these communities, the inequities start before birth and persist until death, generation after generation. curiously, these are typically the same communities located in food deserts and hardest hit by marketing that promotes poor eating patterns. these are also the same zip codes where many of the children bear the brunt of societal insults. they suffer food insecurity more often and are more likely to receive food assistance funds (wight, 2014). with the known relationship between nutrition and academic performance, they often have lower scores on standardized tests and more difficulty meeting academic goals and standards (burrows et al., 2017). furthermore, these children are also frequently perceived to have behavioral issues (the lasting, n.d.). the behavioral issues frequently result in suspension or expulsion from school, making them more likely to drop out before completing high school and increasing the odds of spending time in the penal system (bettina, 2016). implications for international health, policy and/or practice the food industry in the usa leads much of what happens around the world, especially when it comes to cheap, hyper-palatable food products (dehghan, 2022). therefore, the impact of usa food quality and eating patterns is a massive problem for the whole country and a growing problem for the entire world. it affects people, plants, animals, and the planet. the deleterious effects of poor food quality reach more deeply into some populations than others. in the macrocosm, it is a problem for the planet. in the microcosm, it is also most detrimental for specific low-income populations inside and outside the country. these sub-populations inside the usa, mainly african-americans, latinos, and native americans, are the people who can least tolerate the impact of poor nutrition because of a tightly woven tapestry of factors working against them, including but not limited to: • depleted, deteriorated, and unsafe living environments, • decreased access to safe and inviting outdoor spaces, • severely limited access to healthy foods, • inadequate knowledge of the connection between health and nutrition, • genetic predisposition leading to higher rates of chronic illnesses, • minimal to no political power, • low socioeconomic status, • unrelenting systemic racism the machine referred to above is enormous and the four gears described here are a fraction of the total number. the gears are designed to deliver high returns on investment derived from increased sales of cheap, nutrient-poor food-like substances, and loyal customers for these same unhealthful and highly addictive products. furthermore, the gears generate steady, reliable income for the medical and pharmaceutical industries resulting from illness caused by eating these substances and the necessary treatments that follow. ihtp, 2(3), si: 124-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 130 the machine runs continuously, fueled by overconsumption in the usa and global north affecting people in the worldwide global majority (pörtner et al., 2022). the dichotomy between the two is characterized by the former bettering itself at the expense of the latter. the unidirectional flow of natural resources, low-cost labor, goods, services, and minerals, enriches the global north while it impoverishes the global majority by approximately $10 trillion per year (hickel, 2022). this type of gross imbalance between the haves and the decided “will not haves” is especially harmful to children all over the world. for those in the global majority, it negatively affects ecosystems, poisons soil, air, and water supplies, and robs human life and potential. for those in the global north, it props up the belief that even with all the inequities, illness, and damage to society and the planet, this is normal. as a result, the children in the global north grow up to be adults who blindly perpetuate the current situation, as they have generation after generation. the machine works for some while it works against others. even as it consumes resources and causes destruction, it produces enough benefit for some to allow them to focus on the short-term positive returns and purposely invest in its long-term success. nevertheless, whether we know it, everyone supports the machine regardless of how we feel about it. with conviction and reluctance, intentionally and unintentionally, we commit to its continuation through our tax dollars, food and product purchases, employment, and land and water misuse, that we model for our children. our government's weak attempts to find solutions to the glaring and interrelated issues that are the machine's by-products fuel the machine's growth. our refusal to do what we can as individuals only lubricates the seemingly inexorable turning of the machine's well lubricated gears. for example, we could each decrease our consumption of animal products, and increase our intake of whole, healthy, unprocessed, and minimally processed plant foods. those two actions alone could make tremendous difference in human, animal, and global health. part of what allows the machine to run unchecked is that many of the outputs are delivered without conscious public awareness. the general population does not see the connection between our food choices and their impact on the world’s climate. there is virtually no public understanding that there is a way out of sickness that is also a way to support planetary regeneration. specifically, project drawdown research suggests that if 50-75% of people adopt a plant-rich diet by 2050, it would lead to tremendous mitigation of greenhouse gas emissions (frischmann et al., n.d.). however, these facts are not advertised, and therefore, are virtually unknown to the public. furthermore, even when people know the facts, much of what this engine creates is out of their control. for example, marketing is protected unless it contains lies, and someone sues the company responsible for the messages. the creation of lowquality, addictive foods is perfectly legal. targeting vulnerable populations, including children, is commonplace, even for governmental agencies. systemic racism, by its very nature, is encoded into law and, therefore, is accepted practice. adults are free to eat whatever is available, regardless of probable adverse health outcomes or environmental impact. this situation is further perpetuated by systemic corruption, in that we tend to subsidize unhealthy and environmentally destructive foods over healthier foods, all in the name of profits over health (agribusiness, n.d.). monkey wrench in the machine given all the above enumerated conditions, the logical place to interrupt the machine's output is at engine gear 1. the most vulnerable points are the gear teeth where a) children pester their parents for low-quality junk foods and animal products, and b) their parents succumb to the pressure. interestingly, those are also the only places where the most significant number of ordinary people can take control. keeping gear 1 in mind, we know that even though children have no autonomy nor agency, they have power. we know and the food industry banks on the fact that children drive family food purchases. those purchases fuel large parts of the food economy. ihtp, 2(3), si: 124-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 131 let's look at the numbers: there are approximately 73 million children in the usa, almost 50% of whom are children of color (the state, 2021). there are 3.5 million teachers in the usa. about 55 million students are enrolled in public and private schools from prekindergarten to grade 12. another approximately 1.5 million children are homeschooled (nces, n.d.) in 2020, there were 63.1 million parents with children in their homes (bureau, 2021). we had almost 20.5m healthcare workers working in 2018 (dowell, 2021). according to the bureau of labor statistics, 33,620 of them were pediatricians (u.s. bureau, 2022), and 118,198 were family practice physicians (active physicians, 2019). the numbers indicate there is an opportunity to throw a massive professional monkey wrench into engine gear 1. this is precisely the project we are launching. we call the project 6 million seeds. the monkey wrench is purely a grassroots effort, using children's purchasing power as the fulcrum to stop the creation of negative outputs from engine gear 1. a monkey wrench at that fulcrum in engine gear 1 would also impact the outputs from gears 2, 3, and 4. for the monkey wrench to have full effect, it would require educating parents/caregivers, educators, and medical professionals to understand the long and short-term impacts of children's eating patterns on their health and adult health, and to start advocating, teaching, and modeling healthy eating patterns. if parents/caregivers, educators, and healthcare professionals work together to decrease processed food such as junk and animal products for half of the 73 million children, can impact on food purchasing and eating patterns of the general population. we have designed the project as a monkey wrench for engine gear 1 of the machine. 6 million seeds is a 3-part project designed to transform how we feed our children, with the long-term and short-term consequences being improved health outcomes for children, adults, animals, and the planet. the project results can be felt almost immediately and ongoingly into the future. the premise is simple: children are our most precious resource. they are vulnerable and need protection. adults (parents/caregivers, educators, and healthcare professionals) are charged with protecting the children for whom they are responsible. food quality and eating patterns are known social determinants of health, so it follows that it is incumbent upon adults to provide, teach and model healthy food choices and eating behaviors. the name the project name is 6 million seeds. the 6 stands for the six plant food groups: fruits, vegetables, nuts/seeds, beans/legumes, whole grains, and mushrooms. seeds is an acronym: students educated in environment, diet, and sustainability. million is the minimum number range of children we need to change their eating habits to have an impact. with 73 million children in the usa, we need many millions of seeds to reach critical mass. the project part 1 teach children by providing plant-based didactic and food experiences. chief aim: actively and consistently encourage children to grow food gardens, know where their food comes from, and understand the impact of their eating patterns on the environment such that they begin asking for more fruits and vegetables at home. as discussed previously, food marketers rely on the fact that children’s food requests frequently shape the family’s grocery purchases and therefore can lead to a change in the families’ eating patterns. if this change were to occur in each community, we postulate that, over time, it would result in a major shift in eating patterns within that community. educational settings. 6 million seeds meet children in educational settings, which can include schools, afterschool programs, youth clubs, scouting groups, and faith-based groups, etc. in those settings, 6 million seeds provide education for the youth participants, as well as the adult staff that accompany the children to each 6 million seeds session. all participants, youth, and adult are encouraged to ihtp, 2(3), si: 124-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 132 prepare and sample a wide variety of healthy plant foods and dishes during the sessions. adults are asked to model courage and curiosity as they try new flavors and textures. safety standards and attention to cleanliness and potential allergens is always foremost, especially while working with food. in the classroom. 6 million seeds uses curricula that meet common core standards (ccs) so that the lessons align with public school educational requirements. ccs adherence also allows for access to title 1 funding for afterschool programs in lowincome areas, giving it financial footing (polikoff & porter, 2022). while the curricula used are the same from setting to setting, the foods sampled can be tailored to the student population so that the flavor profiles are culturally relevant to the class participants. so, for example, if the students are african american, indian, or latino, food samples would have flavor profiles commonly found in those local cuisines. in situations where the students are from multiple ethnicities and races, food samples would have an appropriate mix of flavor profiles that are common to those local cultures. children also can request favorite dishes be re-created with whole food, nutrient-dense, plant-rich ingredients. another benefit of the education is the emphasis on altruism. lesson by lesson, as the students become acquainted with the curriculum, they learn to practice altruism. altruism, or the concern for the well-being of others, including animals and the planet, has been shown through ego psychology research to be the most powerful psychological defense mechanism against anxiety and depression. (thomas, 2018; irani, 2018). by caring for the garden and learning the connection between the earth, our food and our health, 6 million seeds support the participants as individuals and as a community. in this way, the students and the staff members can maximize physical, social, and mental wellbeing through education, nutrition, and action. on-site garden. part 1 includes the creation or expansion of an on-site 6 million seeds garden. in the garden, children learn first-hand about the connections between human activity, soil, seeds and produce. first, children learn about the difference between healthy and depleted soil. they learn the importance of caring for the earth through composting and recycling. then, they move on to planting and growing fruits and vegetables. later, when the produce is ready, the children harvest it and are encouraged to eat it. if the gardens are large and productive, the fruit and vegetables can be shared with students to take home, used in the school lunch programs, or sold to residents to increase school funding for the program. through these activities, the children and adult participants gain a better understanding of the essential nature of caring for the earth and growing their own food including aspects of food quality, and healthy food access. relationship building with local farmers. another one of the goals of this part of the 6 million seeds project is to assist the educational settings in developing relationships with local farmers, gardeners, and growers. these relationships could teach the children and adults involved about where our food comes from, the importance of caring for the land, a career in agriculture, the value and benefit of eating seasonally, and possibly even create linkages so that the educational setting could source fresh, local produce directly from the local growers. relationships forged in this part of the project could lead the children to a deeper understanding of our food system, especially how it is closely tied to high levels of greenhouse gases produced by our current farming methods. part 2 6 million seeds podcast and social media. even though children have no autonomy, they have power within their families. they are marketed to and, after a certain amount of exposure to advertising, they will reliably make demands of their parents. as such, children are often a conduit to their adults. this is a fact of life: children have adults attached. therefore, to add speed of uptake to the project, we must talk to adults (parents/caregivers, educators, and healthcare professionals) about the same subjects that we cover in the children’s programs. to add that desired velocity, the 6 million seeds podcast is published every two weeks and always delivers some content on child nutrition. to that end, the podcast is continually evolving to deliver ihtp, 2(3), si: 124-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 133 interviews with researchers, educators, medical professionals, climate change activists, farmers, organic gardeners, chefs, and animal rights advocates. we provide information the adults can use to support the students in the project. the subjects are also relevant to other adults who do not have children in the programs. the interviews are designed to be engaging, informative, and relevant for anyone interested in raising healthy children who support a vibrant, healthy world. chief aim: interview guests who provide glimpses into their personal lives, professional and evidencebased information, and frank discussion of issues concerning food, health, and climate change. all guests are asked to give one suggestion to someone who wants to change their diet or one suggestion for what the audience can do to make a positive change right now. suggestions for action have ranged from eating two additional servings of fruits and vegetables per day to planting three seeds in a bucket of dirt, caring for them, and using that to start a revolution. we also post on social media at least daily. although our posts are primarily about food, they also include information on other aspects of a childappropriate healthy lifestyle. part 3 the 6 million seeds decade of excellence in child nutrition. clearly, parts 1 and 2 of the projects would take a long time to show results if implemented alone. therefore, part 3 is designed to scale the project and increase program reach. it is a little-known fact that in the us, many nonprofit groups are already working on nutrition, food systems and climate change. one of the challenges, however, is that each entity appears to be working in a silo, carefully guarding its ideas for fear of competition. therefore, we are missing opportunities to increase success and scale by collaborating with others as a community. moreover, we also see that minority voices are poorly represented in the conversations for transformative action, an issue that must be addressed if we really want to have viable, inclusive, far-reaching solutions. part 3 entails making connections with other likeminded and like-missioned organizations, including those representing diverse populations, to collaborate on projects nationally and internationally. we must actively seek out organizations composed of and lead by bipoc, non-binary, and political minority individuals if we expect lasting transformation. chief aim: build collaborative networks nationwide to create unconventional and innovative methods that will effectively transform childhood nutrition in the usa and elsewhere. the network will include a wide range of diverse voices which provide culturally connected solutions. collaborations add velocity to goal attainment by discovering synergies between organizations and leveraging each organization's strengths. the power of the coalition comes from relationships based on what is possible where the whole is truly more than the sum of its parts. projects created build on what touches, moves or inspires each coalition member and always strategically supports the member organization’s missions while moving the message of child nutrition for planetary health forward. one outstanding example of this nimble approach is a presentation 6 million seeds delivered to a nurse-environmentalist group. the group wanted a continuing education session created and delivered by nurses, for nurses on the relationship between child nutrition and planetary health. 6 million seeds was and is perfectly positioned to fill this request. this is but one of many collaborations that would not have happened outside the context of the 6 million seeds project. conclusion time is short. on the one hand, there is life as we have come to know it with all the products of human beliefs and behaviors. on the other hand, there is life as it could be. in both cases, for better and worse, human activity exacts a price from the planet and its inhabitants. knowing what we know, we must do everything we can to avert the worst effects of planetary illness while doing the greatest good for all. people feel the urgency. it is palpable. the gears of the machine where on destroying health, undermining potential, and eclipsing the planet's ihtp, 2(3), si: 124-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 134 ability to recover. in children, it shows up as obesity, anxiety, depression, and behavioral challenges. as they age, the indicators deepen to include diabetes, hypertension, coronary artery disease, and cancers. in communities, it looks like systemic racism, crime, increased vulnerability, and growing needs for assistance. for the planet, it looks like ecosystem and habitat destruction, species extinctions, and climate chaos. these are but a few of the worsening symptoms. these individual and planetary illnesses have a common cause. they primarily result from high fat, processed, nutrient-poor, and animal-centric eating patterns and the food systems humans have built to sustain them. however, there is a way out. since research shows that our refined, processed and animal-centric dietary patterns fuel the engine, we know that changes to the sad would make a strategic difference globally. simple changes in eating habits, consistently promoted nationwide through a committed network of supporters, would impress upon the american people the importance of transforming what we feed our children. coordination of efforts to change food quality and product demand at the grassroots level could allow the planet to rest, recover, and cool allowing ecosystems to rebound. education during and after school, in youth clubs, and in faith-based groups for children and adults would show that the immediate and long-term value of eating real food far exceeds what the machine’s outputs have trained us to believe. by implementing child-centered, grassroots interventions to dismantle food injustice, help restore food security and access, and eliminate food deserts, perhaps large sections of the low-income bipoc population could complete their education at a higher rate with less police involvement and thereby attain a higher degree of their human potential. as a result, these groups could begin to regain their dignity. children raised with this mindset would have a very different experience of life, themselves, nourishment, and education. furthermore, if our children weren’t forced to live without access to healthy food, a known determinant of health, they might never have to experience the chronic diseases the previous generations have battled. access to and the understanding of the shortand long-term life-giving importance of healthy, real, human food could stop the rising numbers of pediatric type 2 diabetes, heart disease, high blood pressure, and some cancers. therefore, even though food is the catalyst in this crisis, it can and must also be the solution. each of us has the power to make a tremendous difference in our collective and individual trajectories. what we feed our children is the path. we can throw the monkey wrench in the machine and start healing right now. references abdalla, s. m., yu, s., & galea, s. (2020). trends in cardiovascular disease prevalence by income level in the united states. jama network open, 3(9). https://doi.org/10.1001/jamanetworkopen.20 20.18150 active physicians in the largest specialties, 2019. aamc. (n.d.). retrieved august 31, 2022, from https://www.aamc.org/datareports/workforce/interactive-data/activephysicians-largest-specialties-2019 agribusiness: top recipients. open secrets. (n.d.). retrieved august 31, 2022, from https://www.opensecrets.org/industries/recip s.php arias e, tejada-vera b, ahmad f, kochanek kd. provisional life expectancy estimates for 2020. vital statistics rapid release; no 15. hyattsville, md: national center for health statistics. july 2021. doi: https://dx.doi.org/10.15620/cdc:107201. baluyut, e. a. (1989). aquaculture methods and practices: a selected review. retrieved november 8, 2022, from https://www.fao.org/3/t8598e/t8598e05.htm bettina l. love (2016) anti-black state violence, classroom edition: the spirit murdering of black children, journal of curriculum and pedagogy, 13:1, 22-25, doi: 10.1080/15505170.2016.1138258 bureau, u. s. c. (2021, october 8). census bureau releases new estimates on america's families and living arrangements. census.gov. retrieved august 30, 2022, from https://dx.doi.org/10.15620/cdc:107201 ihtp, 2(3), si: 124-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 135 https://www.census.gov/newsroom/pressreleases/2020/estimates-families-livingarrangements.html#:~:text=2%2c%202020%2 0%e2%80%94%20newly%20released%20estim ates,2010%20to%2063.1%20million%20in burrows, t., goldman, s., olson, r. k., byrne, b., & coventry, w. l. (2017). associations between selected dietary behaviours and academic achievement: a study of australian school aged children. appetite, 116, 372–380. https://doi.org/10.1016/j.appet.2017.05.008 campbell, t. c. (2022, november). the future of nutrition. wellness retreat sonoran sunshine 2022. tucson; westward look. centers for disease control and prevention. (2018, august 10). past pandemics. centers for disease control and prevention. retrieved august 30, 2022, from https://www.cdc.gov/flu/pandemicresources/basics/past-pandemics.html centers for disease control and prevention. (2019, april 10). mental health in the workplace. centers for disease control and prevention. retrieved november 8, 2022, from https://www.cdc.gov/workplacehealthpromoti on/tools-resources/workplace-health/mentalhealth/index.html centers for disease control and prevention. (2021, november 24). racism and health. centers for disease control and prevention. retrieved august 31, 2022, from https://www.cdc.gov/healthequity/racismdisparities/index.html centers for disease control and prevention. (2022, may 17). national and state diabetes trends. centers for disease control and prevention. retrieved august 30, 2022, from https://www.cdc.gov/diabetes/library/reports /reportcard/national-state-diabetestrends.html centers for disease control and prevention. (2022, september 8). poor nutrition. centers for disease control and prevention. retrieved november 8, 2022, from https://www.cdc.gov/chronicdisease/resource s/publications/factsheets/nutrition.htm collins, j. (2001). good to great. random house business books. cooksey stowers, k., jiang, q., atoloye, a., lucan, s., & gans, k. (2020). racial differences in perceived food swamp and food desert exposure and disparities in self-reported dietary habits. international journal of environmental research and public health, 17(19), 7143. https://doi.org/10.3390/ijerph17197143 dehghan, l. (2022, november 2). how the western diet affects global food choices. sentient media. retrieved november 8, 2022, from https://sentientmedia.org/how-the-westerndiet-affects-global-food-choices/ devitt, m. (2018, december 10). cdc data show u.s. life expectancy continues to decline. aafp. retrieved august 30, 2022, from https://www.aafp.org/news/health-of-thepublic/20181210lifeexpectdrop.html dowell, e. k. p. (2021, october 14). census bureau's 2018 county business patterns provides data on over 1,200 industries. census.gov. retrieved august 30, 2022, from https://www.census.gov/library/stories/2020/ 10/health-care-still-largest-united-statesemployer.html dutko, p., ver ploeg, m., & farrigan, t. (2012). (rep.). characteristics and influential factors of food deserts. retrieved august 30, 2022, from https://www.ers.usda.gov/webdocs/publicatio ns/45014/30940_err140.pdf. eber, h. (2019, november 16). the shocking foods your kids are eating at school. new york post. retrieved november 11, 2022, from https://nypost.com/2019/11/16/the-shockingfoods-your-kids-are-eating-at-school extinction over time. smithsonian national museum of natural history. (n.d.). retrieved august 30, 2022, from https://naturalhistory.si.edu/education/teachi ng-resources/paleontology/extinction-overtime food marketing to children. the state of childhood obesity. (n.d.). retrieved august 31, 2022, from https://stateofchildhoodobesity.org/policy/fo od-marketing-to-children/ frischmann, c., accuardi, z., miller davis, s., mukkavilli, k., & schroeder, j. (n.d.). plant-rich diets. project drawdown. retrieved august 31, 2022, from https://drawdown.org/solutions/plant-richdiets https://doi.org/10.1016/j.appet.2017.05.008 https://www.cdc.gov/workplacehealthpromotion/tools-resources/workplace-health/mental-health/index.html https://www.cdc.gov/workplacehealthpromotion/tools-resources/workplace-health/mental-health/index.html https://www.cdc.gov/workplacehealthpromotion/tools-resources/workplace-health/mental-health/index.html https://doi.org/10.3390/ijerph17197143 ihtp, 2(3), si: 124-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 136 gleit, r. d. (2022). cops on campus: the racial patterning of police in schools. socius: sociological research for a dynamic world. https://doi.org/10.1177/23780231221108037 global climate dashboard. noaa climate.gov. (n.d.). retrieved november 8, 2022, from https://www.climate.gov/climatedashboard gmos and animal feed getting the facts. biotechnology innovation organization. (2019, november 6). retrieved november 11, 2022, from https://www.bio.org/blogs/gmos-andanimal-feed-getting-facts grant, w. (2019, august 20). how we discovered the climate problem. policy forum. retrieved august 30, 2022, from https://www.policyforum.net/how-wediscovered-the-climate-problem/ harris, j. l., fleming-milici, f., phaneuf, l., jensen, m., choi, y. y., mccann, m., & mancini, s. (2021). (rep.). food advertising to children and teens score 2021. retrieved august 31, 2022, from https://media.ruddcenter.uconn.edu/pdfs/fa cts2021.pdf. harris, j. l., frazier, w., kumanyika, s., & ramirez, a. g. (2019). (rep.). increasing disparities in unhealthy food advertising targeted to hispanic and black youth. retrieved august 30, 2022, from https://media.ruddcenter.uconn.edu/pdfs/ta rgetedmarketingreport2019.pdf. hickel, j., dorninger, c., wieland, h., & suwandi, i. (2022). imperialist appropriation in the world economy: drain from the global south through unequal exchange, 1990–2015. global environmental change, 73, 102467. https://doi.org/10.1016/j.gloenvcha.2022.102 467 hughes, p., & heritage, j. (n.d.). antibiotic growthpromoters in food animals. retrieved november 11, 2022, from https://www.adiveter.com/ftp_public/articulo 1138.pdf. irani, anna s., "positive altruism: helping that benefits both the recipient and giver" (2018). master of applied positive psychology (mapp) capstone projects. 152. https://repository.upenn.edu/mapp_capstone /152 the iucn red list of threatened species. iucn red list of threatened species. (n.d.). retrieved august 30, 2022, from https://www.iucnredlist.org/ kauffman, d. (2020, december 9). cardiovascular disease burden, deaths are rising around the world. american college of cardiology. retrieved august 30, 2022, from https://www.acc.org/about-acc/pressreleases/2020/12/09/18/30/cvd-burden-anddeaths-rising-around-the-world the lasting impact of food insecurity on children. move for hunger. (n.d.). retrieved august 30, 2022, from https://moveforhunger.org/justhunger-lasting-impact-food-insecuritychildren?gclid=cjwkcajw6raybhb7eiwabge5k p-tlkkd5kfekkyjs08kjrt36hqp4di1_4n34k3hlyhd_bmynajjboc yisqavd_bwe leibowitz, j., rosch, j. t., ramirez, e., brill, j., & ohlhausen, m. (2012). (rep.). a review of food marketing to children and adolescents. retrieved august 30, 2022, from https://www.ftc.gov/sites/default/files/docum ents/reports/review-food-marketing-childrenand-adolescents-followreport/121221foodmarketingreport.pdf. mental health by the numbers. nami. (2022, june). retrieved august 30, 2022, from https://www.nami.org/mhstats moss, m. (2013). salt, sugar, fat: how the food giants hooked us. random house. movassagh, e. z., baxter-jones, a., kontulainen, s., whiting, s. j., & vatanparast, h. (2017). tracking dietary patterns over 20 years from childhood through adolescence into young adulthood: the saskatchewan pediatric bone mineral accrual study. nutrients, 9(9), 990. https://doi.org/10.3390/nu9090990 the nces fast facts tool provides quick answers to many education questions (national center for education statistics). national center for education statistics (nces) home page, a part of the u.s. department of education. (n.d.). retrieved august 30, 2022, from https://nces.ed.gov/fastfacts/display.asp?id=3 72#:~:text=how%20many%20teachers%20wer e%20there,in%20private%20schools%20(sourc e). https://www.bio.org/blogs/gmos-and-animal-feed-getting-facts https://www.bio.org/blogs/gmos-and-animal-feed-getting-facts https://www.policyforum.net/how-we-discovered-the-climate-problem/ https://www.policyforum.net/how-we-discovered-the-climate-problem/ https://www.adiveter.com/ftp_public/articulo1138.pdf https://www.adiveter.com/ftp_public/articulo1138.pdf https://repository.upenn.edu/mapp_capstone/152 https://repository.upenn.edu/mapp_capstone/152 https://moveforhunger.org/just-hunger-lasting-impact-food-insecurity-children?gclid=cjwkcajw6raybhb7eiwabge5kp-tlkkd5kfekkyjs-08kjrt36hqp4di1_4n34k3hlyhd_bmynajjbocyisqavd_bwe https://moveforhunger.org/just-hunger-lasting-impact-food-insecurity-children?gclid=cjwkcajw6raybhb7eiwabge5kp-tlkkd5kfekkyjs-08kjrt36hqp4di1_4n34k3hlyhd_bmynajjbocyisqavd_bwe https://moveforhunger.org/just-hunger-lasting-impact-food-insecurity-children?gclid=cjwkcajw6raybhb7eiwabge5kp-tlkkd5kfekkyjs-08kjrt36hqp4di1_4n34k3hlyhd_bmynajjbocyisqavd_bwe https://moveforhunger.org/just-hunger-lasting-impact-food-insecurity-children?gclid=cjwkcajw6raybhb7eiwabge5kp-tlkkd5kfekkyjs-08kjrt36hqp4di1_4n34k3hlyhd_bmynajjbocyisqavd_bwe https://moveforhunger.org/just-hunger-lasting-impact-food-insecurity-children?gclid=cjwkcajw6raybhb7eiwabge5kp-tlkkd5kfekkyjs-08kjrt36hqp4di1_4n34k3hlyhd_bmynajjbocyisqavd_bwe https://moveforhunger.org/just-hunger-lasting-impact-food-insecurity-children?gclid=cjwkcajw6raybhb7eiwabge5kp-tlkkd5kfekkyjs-08kjrt36hqp4di1_4n34k3hlyhd_bmynajjbocyisqavd_bwe ihtp, 2(3), si: 124-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 137 oberst, l. (2022, june 17). why school lunches in america are unhealthy and 10 ways you can take action to improve them. food revolution network. retrieved november 8, 2022, from https://foodrevolution.org/blog/school-lunchin-america/ perry, e. d., ciliberto, f., hennessy, d. a., & moschini, g. (2016, august 31). genetically engineered crops and pesticide use in u.s. maize and soybeans. science advances. retrieved november 11, 2022, from https://www.science.org/doi/10.1126/sciadv.1 600850 philipsborn, r. (2022, october 12). climate checkup for children's health: little changes with big impact. healthychildren.org. retrieved november 8, 2022, from https://www.healthychildren.org/english/safe ty-prevention/all-around/pages/climatecheckup-little-changes-with-big-impact-forchildrens-health-and-the-planet.aspx pinto, a., pauzé, e., mutata, r., roy-gagnon, m. h., & potvin kent, m. (2020). food and beverage advertising to children and adolescents on television: a baseline study. international journal of environmental research and public health, 17(6), 1999. https://doi.org/10.3390/ijerph17061999 polikoff, m., & porter, a. (2022, september 13). the common core explained. the conversation. retrieved november 8, 2022, from https://theconversation.com/the-commoncore-explained-56484 pörtner, h.-o., d.c. roberts, h. adams, i. adelekan, c. adler, r. adrian, p. aldunce, e. ali, r. ara begum, b. bednarfriedl, r. bezner kerr, r. biesbroek, j. birkmann, k. bowen, m.a. caretta, j. carnicer, e. castellanos, t.s. cheong, w. chow, g. cissé, s. clayton, a. constable, s.r. cooley, m.j. costello, m. craig, w. cramer, r. dawson, d. dodman, j. efitre, m. garschagen, e.a. gilmore, b.c. glavovic, d. gutzler, m. haasnoot, s. harper, t. hasegawa, b. hayward, j.a. hicke, y. hirabayashi, c. huang, k. kalaba, w. kiessling, a. kitoh, r. lasco, j. lawrence, m.f. lemos, r. lempert, c. lennard, d. ley, t. lissner, q. liu, e. liwenga, s. lluch-cota, s. löschke, s. lucatello, y. luo, b. mackey, k. mintenbeck, a. mirzabaev, v. möller, m. moncassim vale, m.d. morecroft, l. mortsch, a. mukherji, t. mustonen, m. mycoo, j. nalau, m. new, a. okem, j.p. ometto, b. o’neill, r. pandey, c. parmesan, m. pelling, p.f. pinho, j. pinnegar, e.s. poloczanska, a. prakash, b. preston, m.-f. racault, d. reckien, a. revi, s.k. rose, e.l.f. schipper, d.n. schmidt, d. schoeman, r. shaw, n.p. simpson, c. singh, w. solecki, l. stringer, e. totin, c.h. trisos, y. trisurat, m. van aalst, d. viner, m.wairiu, r.warren, p.wester, d.wrathall, and z. zaiton ibrahim, 2022: technical summary. [h.-o. pörtner, d.c. roberts, e.s. poloczanska, k. mintenbeck, m. tignor, a. alegría, m. craig, s. langsdorf, s. löschke, v. möller, a. okem (eds.)]. in: climate change 2022: impacts, adaptation and vulnerability. contribution of working group ii to the sixth assessment report of the intergovernmental panel on climate change [h.-o. pörtner, d.c. roberts, m. tignor, e.s. poloczanska, k. mintenbeck, a. alegría, m. craig, s. langsdorf, s. löschke, v. möller, a. okem, b. rama (eds.)]. cambridge university press, cambridge, uk and new york, ny, usa, pp. 37–118, doi:10.1017/9781009325844.002 project drawdown: top 80 climate solutions. katharine k. wilkinson. (2019, july 26). retrieved august 31, 2022, from https://www.kkwilkinson.com/writing/projectdrawdown-top-80-climate-solutions the scientific consensus on a healthy diet. (2021). nutritionfacts.org. retrieved august 31, 2022, from https://nutritionfacts.org/video/thescientific-consensus-on-a-healthy-diet/. the share of agri-food systems in total greenhouse gas emissions. global, regional, and country trends 1990–2019. food and agriculture organization of the united nations. (2021, august 11). retrieved november 8, 2022, from https://www.fao.org/food-agriculturestatistics/data-release/data-releasedetail/en/c/1454718/ standard american diet. nutritionfacts.org. (n.d.). retrieved august 31, 2022, from https://nutritionfacts.org/topics/standardamerican-diet/ the state of america's children 2021 overview. children's defense fund. (2021, april 7). retrieved august 30, 2022, from https://www.childrensdefense.org/state-ofhttps://doi.org/10.3390/ijerph17061999 ihtp, 2(3), si: 124-138, 2022 cc by-nc-nd 4.0 issn 2563-9269 138 americas-children/soac-2021overview/#:~:text=there%20were%2073%20 million%20children,majority%20of%20children %20under%205. stewart, l. (2017, may 23). implanting beef cattle. university of georgia cooperative extension. retrieved november 11, 2022, from https://extension.uga.edu/publications/detail. html?number=b1302&title=implanting-beefcattle suwandinata, m. s. h. (2011). children's influence on the family decision-making process in food buying and consumption (dissertation). swinburn, b. a., kraak, v. i., allender, s., atkins, v. j., baker, p. i., bogard, j. r., brinsden, h., calvillo, a., de schutter, o., devarajan, r., ezzati, m., friel, s., goenka, s., hammond, r. a., hastings, g., hawkes, c., herrero, m., hovmand, p. s., howden, m., . . . dietz, w. h. (2019). the global syndemic of obesity, undernutrition, and climate change: the lancet commission report. the lancet, 393(10173), 791–846. https://doi.org/10.1016/s01406736(18)32822-8 thomas, r. (2018, january 31). the importance of teaching altruism in elementary school. metro parent. retrieved august 31, 2022, from https://www.metroparent.com/education/sch ool-issues/importance-teaching-altruismelementary-school/ (2021). (rep.). unep report identifies top actions to minimize adverse impacts of pesticides, fertilizers. u.s. bureau of labor statistics. (2022, march 31). occupational employment and wage statistics. u.s. bureau of labor statistics. retrieved august 30, 2022, from https://www.bls.gov/oes/current/oes291221. htm us department of education (ed). (2018, november 7). title i, part a program. title i, part a program. retrieved november 16, 2022, from https://www2.ed.gov/programs/titleiparta/ind ex.html wang l, martínez steele e, du m, et al. trends in consumption of ultraprocessed foods among us youths aged 2-19 years, 19992018. jama. 2021;326(6):519–530. doi:10.1001/jama.2021.10238 wight, v., kaushal, n., waldfogel, j., & garfinkel, i. (2014). understanding the link between poverty and food insecurity among children: does the definition of poverty matter? journal of children & poverty, 20(1), 1–20. https://doi.org/10.1080/10796126.2014.8919 73 youtube. (2021). to be means to interbe. youtube. retrieved august 31, 2022, from https://www.youtube.com/watch?v=uuvqp4 kmnwk https://doi.org/10.1016/s0140-6736(18)32822-8 https://doi.org/10.1016/s0140-6736(18)32822-8 https://doi.org/10.1080/10796126.2014.891973 https://doi.org/10.1080/10796126.2014.891973 ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 418 the mental health of immigrant and refugee children in canada: a scoping review nazish1, olga petrovskaya2, bukola salami1 1faculty of nursing, university of alberta, alberta, canada, 2school of nursing, university of victoria, british columbia, canada corresponding author: nazish (pachani@ualberta.ca) abstract introduction: firstand second-generation immigrant children under 15 years of age make up 37.5% of the total population of children in canada. immigrant children aged 10-19, irrespective of their immigration status, face ethnic victimization at school and in their neighborhoods. by 2036, the number of immigrant children in canada is predicted to increase by 49%. method: a well-established arksey and o’malley’s five-stage methodological framework was applied to conduct this scoping review. this project reviewed the existing research literature on factors affecting the mental health of immigrant and refugee children (aged 0 to 18 years) in canada. twenty-seven publications are included in the analysis and synthesis. results: the mental health of immigrant and refugee children can be viewed as a product of personal, social, cultural, economic, and pre-and post-migratory factors. immigrant and refugee children’s experiences of migration can be stressful and destabilizing. service providers are not well trained and often cannot grasp the circumstances of immigrant and refugee children and families, which consequently disengages these clients from required treatment services and follow-up care. conclusion: reflection of diversity and inclusivity in mental health policies can influence actions in a primary care setting and reduce accessibility gaps and barriers that affect immigrant and refugee children in canada. keywords child, immigrant, mental health, policies, refugee introduction globally, millions of children migrate across borders as almost one in eight migrants are children (unicef, 2019a). according to the united nations children’s fund (unicef), the migration of children (under 19 years of age) increased from 28.7 million in 1990 to 37.9 million in 2019. in 2016, around 2.2 million immigrant children, including both firstand second-generation children (table 1), under the age of 15 lived in canada (statistics canada, 2020). these firstand second-generation immigrant children make up 37.5% of the total population of children in canada (statistics canada, 2017a). children in this group have at least one foreign-born parent residing in canada (statistics canada, 2017a). by 2036, the number of immigrant children in canada is predicted to increase by 49% (statistics canada, 2017b). the world is facing a refugee crisis and the migration of refugee children is also rising; nearly one in three children living outside of their country of birth is a refugee (unicef, 2019b). according to unicef (2019a), there are nearly 50 million refugees and displaced children globally, not including seven million children who are displaced by natural disasters. canada has always generously welcomed refugees. in 2017, there were 25,310 refugee children under the age of 15 with permanent resident status living in canada; these children are generally younger than immigrant children (the un refugee agency canada, 2021). immigrant and refugee children often face difficulty acquiring necessities in host countries, such as food, shelter, education, health, and freedom of expression, and struggle to express feelings related to trauma, violence, and conflict (mental health commission of canada, 2019). in particular, immigrant and refugee children face acculturative stress, cultural inequality, and racial discrimination in school and have unmet mental healthcare needs (edge & newbold, 2013; kalich et al., 2016; salami et al., 2017). racial differences based upon colour, culture, and ethnic origins affect attitudes, subject individuals to differential treatment, and act as a barrier to the ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 419 acquisition of professional help; this consequently leads to poor health outcomes, particularly among immigrant and refugee children. racial stratification in sectors such as education, health, and employment leads to stressors that perpetuate oppression, domination, and victimization. microaggressions due to acculturative and racial stressors prevent immigrants from accessing professional mental health services (corneau & stergiopoulos, 2012). thus, racism is a key structural determinant of health, and this phenomenon is dubbed the “double stigma” for minority groups (gary, 2005). for many decades in canada, the mental health challenges of immigrant and refugee children have been undetected and unaddressed, creating a significant cost to the healthcare system (barozzino, 2010; wilson, murtaza, & shakya, 2010). the mental health of immigrant and refugee children is important as canada’s immigrant population continues to grow. reflection of diversity and inclusivity in mental health policies can influence actions in primary care settings and would reduce accessibility gaps and barriers among immigrant and refugee groups in canada. developing interdisciplinary strategies is crucial to reduce psychological strain and offer supportive interventions. immigrant and refugee populations have diverse socio-cultural conceptions of mental health that may create challenges for health and social service providers. indeed, evidence affirms that service providers often lack understanding and have insufficient training with respect to providing culturally sensitive participatory services (bhayana & bhayana, 2018; brassart et al., 2017; kroening et al., 2016; woodgate et al., 2017). the purpose of this paper is to report the findings of a scoping review of existing research literature on factors affecting the mental health of immigrant and refugee children in canada. methods we used a scoping review methodology. the purpose of scoping reviews is to map the relevant literature, acquire greater conceptual understanding, identify gaps, and use the existing empirical understanding to interpret issues and concerns to inform further research and application, especially in policy decisions (tricco et al., 2018). a scoping review (rather than a systematic review) is most appropriate as our research question was broad and sought to examine the nature and range of the literature in this field (arksey & o'malley, 2005; levac et al., 2010). also, the review considered diverse study designs but no quality assessment, as our aim was not to assess the quality of evidence. we applied well-established arksey and o’malley’s five-stage methodological framework for conducting this scoping review: stage 1: identifying the research question; stage 2: identifying relevant studies; stage 3: selecting studies; stage 4: charting the data; and stage 5: collating, summarizing, and reporting the results. we followed tricco et al.’s (2018) preferred reporting items for systematic reviews and meta-analyses extension for scoping reviews (prisma-scr). our review sheds light on what is currently known in a broad sense in this research area and identifies knowledge gaps. 1. identifying the research question the research question was: what are the factors affecting the mental health of immigrant and refugee children (aged 0 to 18 years) in canada? 2. identifying relevant studies we identified relevant studies through a search of diverse electronic databases and by reviewing reference lists of articles that met our inclusion criteria. a health science librarian assisted in refining our search strategy and terms and in searching the following databases: pubmed, cinahl, scopus, socindex, and sociological abstracts. the following sets of keywords were used and combined. the first set were those that represented immigrants, and included immigrant*, migrant*, immigration*, migration*, and transients. these keywords were combined with words related to children, including child*, adolescent*, infant, toddler, and preschool. these two keywords were combined with the word canada and the names of each canadian province/territory. the search was restricted to articles published in english. no grey literature was included in this review. 3. selecting studies the initial search was conducted in january 2017 without time restrictions and resulted in n=2647 records. at this stage, a research assistant and one member of the research team independently screened the titles and abstracts by applying inclusion/exclusion criteria. inclusion criteria were: 1) population: immigrant and refugee children aged 0 to 18 years; 2) location: canada; 3) phenomenon of interest: barriers and facilitators of mental health (factors occurring naturalistically without research interventions); 4) design: primary research using nonexperimental and qualitative designs; and 5) ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 420 publication date: between january 1997 and january 2017. exclusion criteria were studies published prior to 1997; population above the age of 18; studies with a mixed sample of children and adults where findings were aggregated; location outside of canada; focus on physical health; focus on education rather than healthcare; intervention designs; review studies; and grey sources (conference proceedings, book chapters). the initial screening resulted in 53 records for a fulltext review, which was conducted by a research assistant and verified by one reviewer. another member of the research team resolved disagreements. this process resulted in 39 articles. refer to the prisma flow diagram (figure 1) for further details. in december 2020, an updated search covering the period between january 2017 and december 2020 was conducted following the same search strategy and applying the same inclusion/exclusion criteria. this process resulted in 58 records. two reviewers independently screened titles and abstracts followed by the full-text review of select articles, which resulted in eight included articles. both searches combined generated 46 unique articles (one was a duplicate) published between 1997 and december 2020. to increase the relevance of our review and provide current evidence, the research team limited the final selection to articles published in the past 10 years, between january 2010 and december 2020. thus, 27 articles are included in analysis and synthesis in our review. 4. data extraction and analysis data extraction process involved charting and sorting material according to key issues and themes related to the mental health of immigrant and refugee children. information about the selected articles was documented within a microsoft word file, including citation, study design, key themes, key findings, and recommendations (table 2). data were collated thematically. 5. study characteristics a total of 27 research studies met the inclusion criteria. table 3 provides an overview of the study characteristics. in all reviewed studies, researchers assessed “mental health” based on participants' selfreport. conceptualizations of mental health varied across studies. several studies mostly focused on psychological and emotional problems as shown in table 4. results the mental health of immigrant and refugee children can be viewed as a combined product of personal, social, cultural, economic, and pre-and postmigratory factors. below, a detailed analysis of the literature is provided under the following three main themes: pre-migration, post-migration, and familiar and cultural factors. pre-migratory factors, arrival characteristics, and mental health length of stay and age at migration among immigrant and refugee children, age at migration and length of stay were shown to be significant characteristics affecting their mental health in the host country. national data from the new canadian children and youth study (nccys; 2002-2004) (beiser et al., 2014) showed a weak inverse relationship (b = 0.006, β = 0.006, se = 0.042) between the age of immigrant children at the time of arrival in canada and the mental health risk in this population. younger children (between the ages of 4 and 6) were more likely to show physical aggression and emotional problems than older children (between the ages of 11 and 13) (beiser et al., 2014). a study found that immigrant children who had lived in canada for less than 5 years were more likely to report extreme levels of stress and despair post migration (hilario et al., 2014). another study compared data in a cross-sectional survey of the year 1983 (n = 2836) and 2014 (n = 5785) to examine the changes in the prevalence of mental disorders among immigrant children and youth in ontario (comeau et al., 2019). it reported an increase in emotional disorders from 9.2 to 13.2% in children aged 4 to 16 years, as well as an increase in hyperactivity among males from 8.9 to 15.7% of the same age group. parent and child language competencies well-being and smooth adaptation of immigrants at the place of resettlement depend upon the linguistic proficiency and education of both parent and child. results from a national survey of 2031 immigrant families who participated in the nccys (beiser et al., 2010, 2011, 2014) indicated caregivers’ lack of language fluency in one of canada’s official languages could greatly contribute to higher levels of emotional problems, such as depression, somatization, resettlement stress, and perception of prejudice among immigrant children post-migration in canada ([b = 0.035, β  = -0.057, se = 0.014, p < 0.05] (beiser et al., 2010); [b= -0.24, p < 0.05, 95% ci ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 421 [− 0.38, − 0.11]] (beiser et al., 2011); [b = -0.057, β = 0.026 se = -0.087, p < 0.05] (beiser et al., 2014). additionally, immigrant children generally face role reversal, a situation in which parents rely on their children to interact with the world, and this led to emotional problems among both immigrant children and their parents (beiser et al., 2010). further, researchers have explored barriers and facilitators to health and social service access and utilization among immigrant and refugee parents raising a child with disability, finding the majority of parents were unable to access and utilize mental healthcare and social services for their children due to language barrier (fellin et al., 2013). thus, limited parental language proficiency is associated with emotional problems and acculturation stress in immigrant children to canada. immigrants’ social capital from countries of origin the support of family from the country of origin has a significant and inverse relationship with psychological distress and interpersonal strain. more symptoms of anxiety were related to low support from friends in an immigrant’s home country and in canada (r = -.39, p = 0.05) (lecompte et al., 2018). data related to south asian immigrant children indicated social support from the country of origin was often solely from one of the parents, which may be insufficient to support the child’s well-being in canada (lecompte et al., 2018). this study emphasized that staying connected with multiple family and friends in their home countries best facilitated building psychosocial resources and fostered resilience among immigrant children in the host country. history of trauma and abuse refugees usually suffer great psychological trauma and developments due to violence, torture, conflict, war, and terror in their countries of origin, which consequently impacts their psychological functioning (i.e., manifesting as aggressive behavior and emotional problems) post-migration in the host country. this is supported by findings from the nccys, which included youth between the ages of 11 and 13 years who had been born abroad and had been living in canada for 10 years or less at the time the study began (beiser & hou, 2016). the data indicated that, post migration, refugee youth had significantly higher levels of both emotional problems (ep: m = 11.05, p < 0.01) and aggressive behaviour (ab: m = 7.49, p < 0.05) than immigrant youth (ep: m=10.35 and ab: m=7.18) from the same countries. interestingly, refugee children perceived themselves as more instrumentally and socially competent; that is, they were capable of doing tasks alone, able to figure out problems on their own, and easily get along with other people when compared to immigrant children (immigrants = 38.32, refugee = 39.35, p < 0.05) (beiser & hou, 2016). nevertheless, these refugee children struggled greatly for emotional stability (beiser & hou, 2016). in contrast, in a sample of syrian newcomer refugee children aged 5-13, among those who were subjected to pre-migratory major life stressors, the incidence of daily stresses did not affect their sadness regulation post migration in canada (elsayed et al., 2019). this finding suggested children who have undergone frequent life stressors were resistant to (i.e., their sadness regulation was unaffected by) the normally unfavorable effects of an undesirable situation, such as daily hassles (elsayed et al., 2019). the authors termed this phenomenon an “immunizing effect,” where past vulnerabilities built greater strength to face a future crisis with ease and confidence. in contrast, immigrant and refugee children in this sample from syria who witnessed lesser adversities pre-migration reported a higher level of post-migratory daily hassles (β = − 0.38, p = 0.02, 95% ci [− 0.70, − 0.06]), which led to worsening emotional (sadness and anger) regulation (elsayed et al., 2019). this phenomenon was referred to by the authors as the “specificity principle”, meaning that every group of immigrants has been differentially impacted and presents distinct sadness and anger regulation patterns post-migration. gross national product (gnp) of the country of origin the gnp is the total value of all finished goods and services produced by a country’s citizens and one of the significant economic and social indicators of societies (montazer & wheaton, 2011). the gnp of the country of origin may reflect immigrants' and refugees' distinct adaptation patterns post-migration in the host country. montazer and wheaton (2011) interviewed 847 immigrant children ages 9 to 16 from countries with different gnps: lower (n=94), lower middle (n=87), upper middle (n=94), and upper (n=189). overall, children from low-gnp countries had more to learn, faced greater uncertainty and discrimination, and had greater cultural differences than immigrants from other countries, which made adaptation to the host country more challenging. this study also compared firstand secondgeneration immigrant children from countries with low gnp and concluded the first-generation ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 422 immigrant children showed greater academic excellence and lower dislike of school. secondgeneration immigrant children from countries with low gnp status reported higher levels of externalizing difficulties, such as delinquency and aggression, and internalizing difficulties, such as somatic complaints, withdrawal syndrome, anxiety, and depression (montazer & wheaton, 2011). this observation was explained as follows: first-generation immigrant children from low-gnp countries report fewer family conflicts and greater parental care compared to second-generation immigrant children from low gnp countries, who experience more family conflicts and less parental care, which negatively affects their mental health. in contrast, immigrant children from higher or similar gnp backgrounds to a country of destination (canada) generally had no mental health adjustment difficulties because they behaved in the same way as the native-born population (montazer & wheaton, 2011). post-migratory contingencies and mental health academic performance as an indicator of mental well-being and a factor affecting psychological adjustment the academic performance of newcomer immigrant and refugee children in canada is linked to their psychological functioning through social competence (having friends) and self-esteem (i.e., “i like the way i am”). the nccys conducted with children aged 11 to 13 years (n=1,053) living in montreal, toronto, vancouver, and the prairies examined the relationship between demographic factors and academic performance (oxman‐martinez et al., 2012). girls were more likely to have a greater sense of academic competence (b = .15, β = .10, se = .05, p < .01) and better grades (b = .20, β = .15, se = .02, p < 0.01) than boys. moreover, children from single-parent families were at a disadvantage in terms of attaining better academic grades possibly because parental stress affected their academic performance. the significance of these findings relates to the observation that immigrant and refugee children with a higher sense of academic performance report lower levels of psychological and social isolation postmigration in canada (oxman‐martinez et al., 2012). poorer academic attainment can be a risk factor for lower psychological adjustments, such as lower selfesteem and more symptoms of depression, as seen among adolescents from immigrant chinese families (costigan et al., 2010). this study also indicated a strong sense of ethnic identity motivated immigrant and refugee children to work hard in school and gave a sense of meaning to their academic goals. thus, academic achievement is associated with a strong sense of identity and can promote the mental wellbeing of immigrant youth. experiences of violence and discrimination at school and in the neighborhood immigrant and refugee children’s experiences of migration can be stressful and destabilizing. in canada, these children experience two major forms of violence: physical aggression and verbal abuse (brabant et al., 2016; oxman-martinez et al., 2012). the most direct and offensive form of violence is physical aggression, which includes hitting, fighting, and pushing. verbal abuse includes being called hurtful words – insults, mockery, and mean remarks – in front of people as well as bullying at school. some immigrant and refugee children experience scornful attitudes, sidelong glances, shoving, sarcastic laughter, hurtful racist words, and social exclusion due to different skin colour, accent, or customs (brabant et al., 2016; oxman-martinez et al., 2012). many immigrant and refugee children believe those experiences of violence directly influence their school performance, cognitive functioning, and emotional regulation post-migration in canada (brabant et al., 2016; oxman-martinez et al., 2012). racial discrimination affects the health of immigrant and refugee children, and the association between discrimination and health is complicated (george & bassani, 2018). findings of the nccys indicate one important indicator of impaired psychosocial functioning among immigrant adolescents is perceived discrimination by peers and teachers in school and the community, suggesting perceived discrimination is negatively linked to selfesteem (b =-.223, β = -.116, se =.085, p < .01) and social competence (b = -.384, β = -.141, se =.126, p < .001.) (oxman-martinez & choi, 2014). immigrant and refugee children employed the following seven coping strategies to maintain their emotional and cognitive well-being in the face of experiences of violence and discrimination at school in canada: 1) ignoring the situation; 2) seeking assistance from authority figures to neutralize the aggressor; 3) requesting a reason or apology from the aggressor; 4) releasing stress through participation in physical, social, cultural, and leisure activities; 5) building personal strength as an opportunity to learn new skills; 6) seeking solace in spiritual activities; and 7) returning to family and friends for warmth and emotional support (oxman-martinez & choi, 2014). ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 423 neighborhood ethnic homogeneity one study found ethnic homogeneity plays a role in fostering the well-being of immigrant and refugee children in canada, as it enhances social interaction and thus creates strong social cohesion among a specific population group. a cohort study by mcrae et al. (2020) identifies the link between neighborhood factors, including immigrant or ethnic concentration, and child developmental vulnerability. this study defines developmental vulnerability with indicators in five domains: physical health and well-being, emotional maturity, social competence, language and cognitive development, and communication and general knowledge. the locations where inhabitants were of similar ethnicity had, on average, lower levels of child developmental vulnerability than those with diverse ethnicity. the researchers concluded that neighborhood ethnic homogeneity is consistently associated with less developmental vulnerability than predicted by income across all developmental domains (mcrae et al., 2020). interpretation of these findings suggests ethnic and ethnic-immigrant homogenous communities hold assets, apart from financial resources, that support children’s ability to flourish at an early age. social support in the host country social support in the host country can act as a buffer to the negative effects of daily life hassles for immigrant and refugee children in canada. two studies describe the relationship between social support from the host country and its impacts on the mental health of immigrants (beiser et al., 2011; lecompte et al., 2018). in a sample of 4000 immigrant children from mainland china, hong kong, and the philippines, a statistically significant negative relationship (β = -0.03, 95% ci -0.05 to 0.00, p<0.05) was found between social support (i.e., having some friends and family members to provide guidance when having any problem in order to feel safe, secure, and happy) and children’s emotional problems (beiser et al., 2011). in another study, participants included 33 south asian immigrant mothers and their children aged 1-7 years from bangladesh, india, pakistan and sri lanka (lecompte et al., 2018). a low level of social support from friends and family in canada was a crucial stressor that greatly influenced these immigrant children’s sense of belonging in the host country, which eventually led to social exclusion and more disorganized attachment behaviors, such as exaggerated emotional expression and immature or angry behavior toward their parents. barriers to accessing healthcare: lack of information, stigma, and financial strain a recent study explored immigrant and refugee mothers’ perceptions of barriers to and facilitators for mental healthcare for their children in alberta, canada (tulli et al., 2020). the findings indicated the mothers felt alienated from both other people in their communities and their family in their country of origin, which hindered their ability to access mental health services for their children (tulli et al., 2020). access to mental health services for immigrant and refugee children and their parents can be hampered by lack of information, stigma, and financial strain (fellin et al., 2013; tulli et al., 2020). lack of information about the healthcare system and accessible services was a vital impediment for mothers, who reported disappointment about not knowing where to find resources and feeling unsupported and unheard by either schools or service providers. they faced health system bureaucracy and unnecessary paperwork to seek mental health services (tulli et al., 2020). financial burden made it challenging for mothers to access services such as counselling, sports, and recreational services for their children and restricted access to these high-cost programs and services due to low incomes. stigma around mental health and the fear of having their child labelled was a factor that made it hard for mothers to seek mental health services (tulli et al., 2020). however, mothers who were well educated were able to access free services, such as sports and recreation, speech language pathologists, occupational therapists, psychologists, and libraries, and were able to support their children’s mental wellbeing or better treat their mental illness concerns (tulli et al., 2020). in another study, researchers investigated concerns of maghreb parents newly immigrated to québec who have a child diagnosed with autism (bencheikh & rousseau, 2013). the findings showed mothers were very worried about their children’s condition due to the lack of therapeutic collaboration as a result of administrative barriers such as bureaucracy and intercultural communication difficulties, including language barriers, stereotyping, and conflicting values and belief. child immigration detention child immigration detention is the detaining of an immigrant child or canadian citizen child, who are often de facto detainees accompanying a detained parent or other family member. children and their ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 424 parents may be incarcerated in canada for three main reasons: 1) their identity is being confirmed as asylum seekers; 2) an immigration officer considers them improbable to appear for a meeting or enquiry (“flight risk”); and/or 3) they are considered a threat to the public (kronick et al., 2018). two articles (kronick et al., 2015, 2018) focused on the negative impacts of immigration detention. these studies included 20 refugee parents and their 35 children (age 0-20) in detention to understand the experiences of detained children and families who have sought asylum in canada. the findings indicated immigrant and refugee children reacted to detention with intense distress, fear, and a deterioration of functioning, leaving children with psychiatric and academic difficulties long thereafter (kronick et al., 2015). confinement and monitoring while in detention led to traumatic incidents in the lives of refugee children, including other post-migration stressors such as precarious status or restricted independence (kronick et al., 2015). their findings reported children’s feelings of fear, threat, protection, safety, and awareness of loss of protection within the context of an optimism that migration will convey a better life (kronick et al., 2015). further, family separation instigated by detention appeared as a major concern for the children, as detention added new vulnerabilities including separation anxiety, selective mutism, and sleep disturbances (kronick et al., 2018). parents indicated the responses of children, particularly those of teens, indicate constraints (e.g., the perception of deprivation) and terrifying detention conditions (e.g., the presence of rotating strangers or security guards) are acutely distressing for children. following detention, most families reported persistent emotional distress and worsened posttraumatic symptoms, such as interrupted sleep, temper tantrums, and fear in children (kronick et al., 2018). for adolescents and children, immigration detention is an extremely stressful and potentially traumatic experience. the study findings also indicated children expressed their fears of being harmed by police and other aggressive forces in their new home. the children also grappled with prior memories of atrocities that may have been re-induced by detention (kronick et al., 2018). therefore, detention of immigrant and refugee children in canada can be a harmful stressor that can affect the ability of children to heal from past damage and psychopathology (kronick et al., 2015, 2018). familial and cultural factors familial characteristics that serve as risk factors for poor mental health four articles based on the longitudinal nccys reported a relationship between maternal mental health and child’s mental well-being (beiser & hou, 2016; beiser et al., 2011, 2015; hamilton et al., 2011). in 2004, participants included 2,031 children from immigrant families from hong kong, mainland china, and the philippines (beiser et al., 2011). a subset of the 2004 nccys in 2011 included 64 refugee preadolescents from ethiopia (beiser et al., 2015) and 533 immigrant children from hong kong, mainland china, and the philippines (brabant et al., 2016). a subset of the 2004 nccys in 2014 included 326 immigrant youth from hong kong, mainland china, and the philippines and 152 refugee children from vietnam, el salvador, ethiopia, sri lanka, afghanistan, and serbia (beiser & hou, 2016). these studies found that maternal anxiety, depression, somatization (beiser et al., 2011, 2015; beiser & hou, 2016; hamilton et al., 2011) as well as parent-child conflicts and harsh parenting (bakhshaei & henderson, 2016) led to emotional distress among immigrant children post-migration in canada. maternal mental health was affected by cultural dissonance, perceived prejudice, perceived discrimination, and low social supports from both country of origin and country of destination. low maternal mental health subsequently led to mental health problems including fear, anxiety, and depression among immigrant and refugee children (hamilton et al., 2011). familial characteristics that serve as protective factors for mental health family harmony and maintenance of familial relationships act as a means of resilience for newcomer immigrant and refugee children who encounter challenges adjusting to a new environment. in a mixed-method study, 12 immigrant youth aged 15 to 18 years old from syria, singapore, colombia, iraq, saudi arabia, and united arab emirates were asked to respond to the question, “what do you like at home [in canada]?” (burgos et al., 2017). youth stressed the importance of feeling safe and comfortable in the home environment as well as the ability to easily seek parental advice at times of insecurity. immigrant youth mentioned the need to have routines, interactions with family members and younger siblings, and structure or rules implemented at home. they also mentioned the privilege of having a larger house in canada compared to their country of origin. youth further acknowledged age ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 425 appropriate opportunities provided by the government and school that benefited their living conditions, for instance driving a vehicle, sleeping over at a friend’s house, and getting child tax benefit money from their parents. these youth regarded their families as a source of comfort, safety, and strength. family loyalty and responsibility, familycenteredness and relatedness, and respect for parents promoted values that led to a positive sense of belonging, self-efficacy, self-esteem, and social competence inside and outside of the home for this group of participants (burgos et al., 2017). similarly, in a sample of 459 immigrant youth aged 11 to 13 years from mainland china, hong kong, the philippines, haiti, and lebanon, stronger self-esteem and greater social maturity were found among youth with supportive parental relationships (oxmanmartinez & choi, 2014). despite possible tensions within immigrant communities, such as postmigratory stress and acculturation, the family tends to be a reliable source of defense against psychological disfunction in immigrant youth (oxman-martinez & choi, 2014). thus, research to date supports the idea that family-centeredness is a key determinant of mental health among immigrant children settling in canada. cultural discordance, cultural connectedness, and mental health cultural distance or discordance (cd) is defined as the distance between the culture of origin and canadian culture (beiser et al., 2015) and can significantly affect immigrant and refugee children’s resilience and psychological well-being. the nccys 2004 (beiser et al., 2015) found children from a group with a larger cd experienced higher level of emotional problems (t=10.34, p < 0.001), discrimination (t = 15.31, p < 0.01), and resettlement stress (t = 48.02, p < 0.001) than children from a group with a smaller cd. (these researchers did not provide a list of countries with small vs. large cd but indicated they used data from the world values survey, an international survey that measures beliefs and values of individuals nested within countries.) further, this study found children with a stronger cultural identity perceived a greater sense of purpose, achievement, and social solidarity and lower levels of depressive symptoms (beiser et al., 2015). similarly, researchers reported in another study that a sense of ethnic identity among 459 immigrants aged 11 to 13 years from mainland china, hong kong, the philippines, haiti, and lebanon (which was a subset of nccys 2004 [beiser et al., 2015]) significantly and positively influenced their self-esteem (b = .072, β = .144, se = .024, p < .001) and social competence (b = .141, β = .198, se = .035, p < .001) (oxmanmartinez & choi, 2014). in another study, researchers examined the experiences of acculturation and adaptation among immigrant youth and their parents originating from south asia (n= 19) who lived in canada for more than 15 years and found that parents generally instill one of two fundamental values in their children: what is considered a euro-american or individualistic value system, which included characteristics such as being assertive, independent, competitive, and autonomous, or what is considered a non-western or collectivistic value system, which rewards being compliant, nurturing, and obedient (bakhshaei & henderson, 2016). however, the euro-american value system was not always appropriate and led to conflicts in non-western families and difficulties in their social and economic integration (bakhshaei & henderson, 2016). acculturation and adaptation processes a correlational study among 718 immigrant adolescents aged 11 to 19 years (greeks, haitians, italians, and vietnamese) living in the montreal area used acculturation attitude scales and identified four major types of acculturation processes: assimilation, integration, marginalization, and separation (berry & sabatier, 2010). specifically, participants were asked about perceived personal and group discrimination. those immigrant children who participated in both the culture of origin and canadian culture, designated the “integration course”, were psychologically well adjusted and blended well into school and community. in contrast, children who were minimally involved in either of the cultures, designated the “marginalization course”, were less adapted to school and community and experienced settlement stress. further, children who chose one cultural identity and neglected the other culture, designated the “assimilation or separation course”, fell in-between the two adaptation poles (berry & sabatier, 2010). discussion our review of research published since 2010 identified pre-migratory factors, post-migratory factors, familial characteristics, and cultural contingencies that influence the psychological well-being and mental health of immigrant and refugee children in canada. key findings from the studies pertain to the influence of several factors on the mental health of immigrant children, including immigration status, history of trauma and abuse, gnp of the country of ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 426 origin, daily life stressors, cultural distance, and acculturation. the analysis demonstrated consistency among the existing literature on most of these factors. much of the literature on migrant health suggests a dire need to structurally equip frontline healthcare workers with knowledge, skills, and attitudes to promote safe, quality care for immigrant and refugee children in canada (see e.g., ben-cheikh & rousseau, 2013). culturally safe education can assist mental health and social service providers in terms of selfawareness and self-reflection about values, prejudices, and stereotypes. additionally, past research affirms that failure to provide interpreter services to immigrant and refugee families leads to a barrier in acquiring quality health outcomes and causes mistrust in services (edge & newbold 2013; kalich et al., 2016; salami et al., 2017). employing accredited interpreters and conducting training of professionals would play a vital role in bridging the gaps between clients and mental health and social service workers (hilario et al., 2014). providing a range of communication methods, including telephone or virtual interpreter services, is important to optimize care delivery (fellin et al., 2013). immigrant parents and children often face various psychosocial challenges in building new social supports in the host country (lecompte et al., 2018), suggesting social support organizations in the host country should promote the socialization of immigrants with local people, offer strong support for the provision of accessible trauma-sensitive services, and organize informative programs for newcomer immigrant and refugee parents with respect to navigating health and education systems in canada (mcrae et al., 2020). these support organizations can act as a bridge among health service providers, government, and minority groups to facilitate community belonging, social inclusion, and, ultimately, mental health (beiser et al., 2011, 2015; beiser & hou, 2016). a study with non-profit community-based immigrant service providers highlighted how community belonging is the strongest determinant of immigrant mental health in canada and recommended that social support organizations offer counselling and group therapy sessions to mitigate parental conflicts and facilitate family connectedness (salami et al., 2019). existing literature affirms that school and childcare centers play an essential role (edge & newbold, 2013; kalich et al., 2016; salami et al., 2017). school teachers and staff should strive to maintain a conducive curricular and extra-curricular environment that fosters children's success (bakhshaei & henderson, 2016). collaboration of mental health professionals with the school system would assist in identifying and implementing measures for high-risk crises such as violence and discrimination among non-immigrant and immigrant children (oxman-martinez et al., 2012). mental health professionals and social service providers in school and childcare settings can also help parents mitigate parenting challenges in a new country and create support groups (hamilton et al., 2011). in this way, schools and childcare centers can become safe places for immigrant and refugee parents to seek out advice and support. a wider literature suggests the need to evaluate the effectiveness of current mental health treatments and procedures and to identify challenges that immigrant and refugee children and families face when navigating the canadian healthcare system. researchers also suggest more comparative studies are needed to explain the economic, cultural, and linguistic diversities of countries of origin and mental health differences among immigrant children in canada (montazer & wheaton, 2011). future studies also need to explore why immigrant and refugee girls are more likely to follow or adjust to mainstream school success than boys and what measures can be taken to foster academic competence among immigrant and refugee children who have single or less-educated parents (beiser et al., 2010). initiatives to promote ethnic identity in schools to facilitate immigrant and refugee children’s academic competence in canada should also be explored (brabant et al., 2016; burgos et al., 2017). children, irrespective of immigration status, should be safeguarded from detention and should also not be separated from their parents. policies conscious of children’s best interests should advocate for alternative practices to detention (kronick et al., 2015). community-based alternatives to detention should be established and applied locally and internationally. children’s best interests should be a prime consideration for all responsible decisionmakers, from governments to tribunal members to canada border services agency (cbsa) officers and guards. this will include training at all levels about the multifactorial evaluation of the needs of children by recognizing the experiences of child custody, mental health implications of detention, and effects related to trauma, relocation, and attachment. independent supervisory systems are also required to ensure children and families subject to border protection policies have their human rights respected (kronick et al., 2018). implications ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 427 further research is needed to better understand the coping strategies of newly immigrated families with a child with disability, assess the impact of culturally sensitive support groups on parents, and better understand the experiences of mental health professionals working with immigrant families with disabled children (ben-cheikh & rousseau, 2013). future culturally relevant and developmentally sensitive longitudinal studies on specific cultural processes at the developmental stages across the life span are desirable to discover critical periods of risk and vulnerability, potential for resilience, and optimal prospects for healthy development of immigrant youth (berry & sabatier, 2010; beiser et al., 2012). future research is necessary to explicitly test social cohesion as a mechanism linking neighbourhoodlevel immigrant concentration and low ethnic diversity to reduced child developmental vulnerability (mcrae et al., 2020). conclusion the mental health of immigrant and refugee children is an important component of the future health profile of canadians (beiser et al., 2010, 2011). in particular, the health status and health-related service requirements of immigrants in canada will have an important impact on public health, public spending, future immigration policy, and immigrant integration. the literature calls for the canadian government, social service providers, educators, and health service providers to evaluate and amend current practices and policies to support immigrant and refugee children. policy changes can help to bring about structural changes that promote equality, inclusivity, and accountability for all human beings regardless of their colour, culture, or identity. references arksey, h., & o'malley, l. (2005). scoping studies: towards a methodological framework. international journal of social research methodology, 8(1), 19-32. https://doi.org/10.1080/136455703200011 9616 bakhshaei, m., & henderson, r. i. (2016). gender at the intersection with race and class in the schooling and wellbeing of immigrant-origin students. bmc women's health, 16, 47. https://doi.org/10.1186/s12905-016-03280 barozzino, t. (2010). immigrant health and the children and youth of canada: are we doing enough? healthcare quarterly, 14, 52-59. https://doi.org/0.12927/hcq.2010.21983 beiser, m., & hou, f. (2016). mental health effects of pre-migration trauma and post-migration discrimination on refugee youth in canada. journal of nervous and mental disease, 204(6), 464-470. https://doi.org/10.1097/nmd.000000000 0000516 beiser, m., hamilton, h., rummens, j. a., oxmanmartinez, j., ogilvie, l., humphrey, c., & armstrong, r. (2010). predictors of emotional problems and physical aggression among children of hong kong chinese, mainland chinese and filipino immigrants to canada. social psychiatry and psychiatric epidemiology, 45(10), 1011-1021. https://doi.org/10.1007/s00127-009-01403 beiser, m., zilber, n., simich, l., youngmann, r., zohar, a. h., taa, b., & hou, f. (2011). regional effects on the mental health of immigrant children: results from the new canadian children and youth study (nccys). health & place, 17(3), 822-829. https://doi.org/10.1016/j.healthplace.2011. 03.005 beiser, m., taa, b., fenta-wube, h., baheretibeb, y., pain, c., & araya, m. (2012). a comparison of levels and predictors of emotional problems among preadolescent ethiopians in addis ababa, ethiopia, and toronto, canada. transcultural psychiatry, 49(5), 651677. doi:http://dx.doi.org/10.1177/1363461512 457155 beiser, m., goodwill, a. m., albanese, p., mcshane, k., & nowakowski, m. (2014). predictors of immigrant children's mental health in canada: selection, settlement contingencies, culture, or all of the above? social psychiatry and psychiatry epidemiology, 49(5), 743-756. https://doi.org/10.1007/s00127-013-07948 beiser, m., puente-duran, s., & hou, f. (2015). cultural distance and emotional problems among immigrant and refugee youth in canada: findings from the new canadian child and youth study (nccys). international journal of intercultural relations, 49, 33-45. https://doi.org/10.1016/j.ijintrel2015.06.0 05 ben-cheikh, i., & rousseau, c. (2013). autism and social support in recently immigrated families: experience of parents from https://doi.org/10.1186/s12905-016-0328-0 https://doi.org/10.1186/s12905-016-0328-0 https://doi.org/10.1097/nmd.0000000000000516 https://doi.org/10.1097/nmd.0000000000000516 https://doi.org/10.1016/j.healthplace.2011.03.005 https://doi.org/10.1016/j.healthplace.2011.03.005 https://doi.org/10.1007/s00127-013-0794-8 https://doi.org/10.1007/s00127-013-0794-8 ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 428 maghreb. santé mentale au québec, 38(1), 189-205. https://doi.org/10.7202/1019192ar berry, j. w., & sabatier, c. (2010). acculturation, discrimination, and adaptation among second generation immigrant youth in montreal and paris. international journal of intercultural relations, 34(3), 191-207. https://doi.org/10.1016/j.ijintrel.2009.11.0 07 bhayana, a., & bhayana, b. (2018). approach to developmental disabilities in newcomer families. canadian family physician, 64(8), 567-573. brabant, l. h., lapierre, s., damant, d., dubequenum, m., lessard, g., & fournier, c. (2016). immigrant children: their experience of violence at school and community in host country. children and society, 30(3), 241-251. https://doi.org/10.1111/chso.12131 brassart, e., prévost, c., bétrisey, c., lemieux, m., & desmarais, c. (2017). strategies developed by service providers to enhance treatment engagement by immigrant parents raising a child with a disability. journal of child and family studies, 26(4), 1230-1244. https://doi.org/10.1007/s10826-016-06468 burgos, m., al-adeimi, m., & brown, j. (2017). protective factors of family life for immigrant youth. child and adolescent social work journal, 1-11. https://doi.org/10.1007/s105600160462-4 canadian council for refugees. (2020). refugees and immigrants: a glossary. available online: https://ccrweb.ca/en/glossary (accessed on 13 march 2020) comeau, j., georgiades, k., duncan, l., wang, l., boyle, m. h., & 2014 ontario child health study team. (2019). changes in the prevalence of child and youth mental disorders and perceived need for professional help between 1983 and 2014: evidence from the ontario child health study. the canadian journal of psychiatry, 64(4), 256-264, https://doi.org/10.1177/070674371983003 5 corneau, s., & stergiopoulos, v. (2012). more than being against it: anti-racism and antioppression in mental health services. transcultural psychiatry, 49(2), 261282. https://doi.org/10.1177/136346151244159 4 costigan, c. l., koryzma, c. m., hua, j. m., & chance, l. j. (2010). ethnic identity, achievement, and psychological adjustment: examining risk and resilience among youth from immigrant chinese families in canada. cultural diversity and ethnic minority psychology, 16(2), 264-273. https://doi.org/10.1037/a0017275 edge, s., & newbold, b. (2013). discrimination and the health of immigrants and refugees: exploring canada’s evidence base and directions for future research in newcomer receiving countries. journal of immigration and minority health, 15(1), 141-148. https://doi.org/10.1007/s10903-012-96404 elsayed, d., song, j. h., myatt, e., colasante, t., & malti, t. (2019). anger and sadness regulation in refugee children: the roles of pre-and post-migratory factors. child psychiatry and human development, 50(5), 846-855. https://doi.org/10.1007/s10578019-00887-4 fellin, m., king, g., esses, v., lindsay, s., & klassen, a. (2013). barriers and facilitators to health and social service access and utilization for immigrant parents raising a child with a physical disability. international journal of migration health and social care, 9(3), 135145. https://doi.org/10.1108/ijmhsc-072013-0024 gary, f. a. (2005). stigma: barrier to mental health care among ethnic minorities. issues in mental health nursing, 26(10), 979-999. https://doi.org/10.1080/016128405002806 38 george, m. a., & bassani, c. (2018). influence of perceived racial discrimination on the health of immigrant children in canada. journal of international migration and integration, 19(3), 527-540, https://doi.org/10.1007/s12134018-0539-3 hamilton, h. a., marshall, l., rummens, j. a., fenta, h., & simich, l. (2011). immigrant parents' perceptions of school environment and children's mental health and behavior. journal of school health, 81(6), 313-319. https://doi.org/10.1111/j.17461561.2011.00596.x hilario, c. t., vo, d. x., johnson, j. l., & saewyc, e. m. (2014). acculturation, gender, and mental health of southeast asian immigrant youth in canada. journal of immigration and minority health, 16(6), 1121-1129. https://doi.org/10.1007/s10903-014-9978x https://doi.org/10.7202/1019192ar https://doi.org/10.1016/j.ijintrel.2009.11.007 https://doi.org/10.1016/j.ijintrel.2009.11.007 https://doi.org/10.1111/chso.12131 https://doi.org/10.1007/s10560https://doi.org/10.1177/0706743719830035 https://doi.org/10.1177/0706743719830035 https://doi.org/10.1037/a0017275 https://doi.org/10.1007/s10578https://doi.org/10.1007/s10578https://doi.org/10.1108/ijmhsc-07-2013-0024 https://doi.org/10.1108/ijmhsc-07-2013-0024 https://doi.org/10.1080/01612840500280638 https://doi.org/10.1080/01612840500280638 https://doi.org/10.1111/j.1746https://doi.org/10.1111/j.1746https://doi.org/10.1007/s10903-014-9978-x https://doi.org/10.1007/s10903-014-9978-x ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 429 kalich, a., heinemann, l., & ghahari, s. (2016). a scoping review of immigrant experience of health care access barriers in canada. journal of immigration and minority health, 18(3), 697-709. https://doi.org/10.1007/s10903015-0237-6 kroening, a. l., moore, j. a., welch, t. r., halterman, j. s., & hyman, s. l. (2016). developmental screening of refugees: a qualitative study. pediatrics, 138(3), https://doi.org/10.1542/peds.2016-0234 kronick, r., rousseau, c., & cleveland, j. (2015). asylum-seeking children's experiences of detention in canada: a qualitative study. american journal of orthopsychiatry, 85(3), 287-294. https://doi.org/10.1037/ort0000061 kronick, r., c. rousseau, & cleveland, j. (2018). refugee children's sandplay narratives in immigration detention in canada. europrean child and adolescent psychiatry, 27(4), 423437, https://doi.org/10.1007/s00787-0171012-0 kwak, k., & rudmin, f. (2014). adolescent health and adaptation in canada: examination of gender and age aspects of the healthy immigrant effect. international journal for equity in health, 13(1), 103. https://doi.org/10.1186/s12939-014-01035 lecompte, v., miconi, d., & rousseau, c. (2018). challenges related to migration and child attachment: a pilot study with south asian immigrant mother–child dyads. attachment and human development, 20(2), 208-222. https://doi.org/10.1080/14616734.2017.13 98765 levac, d., colquhoun, h., & o'brien, k. (2010). scoping studies: advancing the methodology. implementation science, 5(1). https://doi.org/10.1186/1748-5908-5-69 mcrae, d. n., muhajarine, n., janus, m., duku, e., brownell, m., forer, b., & guhn, m. (2020). immigrant and ethnic neighbourhood concentration and reduced child developmental vulnerability: a canadian cohort study. international journal of population data science, 5(1), 1147, https://doi.org/10.23889/ijpds.v5i1.1147 mental health commission of canada. (2019). immigrant, refugee, ethnocultural and racialized populations and the social determinants of health: a review of 2016 census data. retrieved from: https://www.mentalhealthcommission.ca/ sites/default/files/201903/irer_report_mar_2019_eng.pdf montazer, s., & wheaton, b. (2011). the impact of generation and country of origin on the mental health of children of immigrants. journal of health and social behaviour, 52(1), 23-42. https://doi.org/10.1177/002214651039502 7 oxman-martinez, j., & choi, y. r. (2014). discrimination, relationships and ethnic identity as predictors of self-esteem and social competence among early adolescent immigrants in canada. in borders, j.h., handbook in the psychology of self-esteem. nova science publishers inc.: new york; pp. 103-122 oxman‐martinez, j., rummens, a. j., moreau, j., choi, y. r., beiser, m., ogilvie, l., & armstrong, r. (2012). perceived ethnic discrimination and social exclusion: newcomer immigrant children in canada. american journal of orthopsychiatry, 82(3), 376. https://doi.org/10.1111/j.19390025.2012.01161.x salami, b., yaskina, m., hegadoren, k., diaz, e., meherali, s., rammohan, a., & ben-shlomo, y. (2017). migration and social determinants of mental health: results from the canadian health measures survey. canadian journal of public health, 108(4), 362-367. https://doi.org/10.17269/cjph.108.6105 salami, b., salma, j., hegadoren, k., meherali, s., kolawole, t., & diaz, e. (2019). sense of community belonging among immigrants: perspective of immigrant service providers. public health, 167, 28-33. https://doi.org/10.1016/j.puhe.2018.10.017 statistics canada. (2020). immigration and ethnocultural diversity in canada. available online: https://www12.statcan.gc.ca/nhsenm/2011/as-sa/99-010-x/99 010x2011001-eng.cfm (accessed on 8 may 2020). statistics canada. (2017a). census in brief: children with an immigrant background: bridging cultures. available online: https://www12.statcan.gc.ca/censusrecensement/2016/as-sa/98-200x/2016015/98-200-x2016015-eng.cfm (accessed on 12 august 2020). statistics canada. (2017b). the daily-immigration and ethnocultural diversity: key results from the 2016 census. available online: https://www150.statcan.gc.ca/n1/dailyhttps://doi.org/10.1007/s10903-015-0237-6 https://doi.org/10.1007/s10903-015-0237-6 https://doi.org/10.1186/s12939-014-0103-5 https://doi.org/10.1186/s12939-014-0103-5 https://doi.org/10.1177/0022146510395027 https://doi.org/10.1177/0022146510395027 https://doi.org/10.1111/j.1939-0025.2012.01161.x https://doi.org/10.1111/j.1939-0025.2012.01161.x https://doi.org/10.17269/cjph.108.6105 https://www12.statcan.gc.ca/census-recensement/2016/as-%09sa/98-200https://www12.statcan.gc.ca/census-recensement/2016/as-%09sa/98-200https://www150.statcan.gc.ca/n1/daily-quotidien ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 430 quotidien/171025/dq171025b-eng.htm (accessed on 2020). the un refugee agency canada. (2021, march 16). refugee statistics. unhcr canada. https://www.unhcr.ca/incanada/refugee-statistics/ tricco, a. c., lillie, e., zarin, w., o'brien, k. k., colquhoun, h., levac, d., ... & hempel, s. (2018). prisma extension for scoping reviews (prisma-scr): checklist and explanation. annals of internal medicine, 169(7), 467-473. https://doi.org/10.7326/m18-0850 tulli, m., salami, b., begashaw, l., meherali, s., yohani, s., hegadoren, k. (2020). immigrant mothers' perspectives of barriers and facilitators in accessing mental health care for their children. journal of transcultural nursing, 31(6), 598-605, https://doi.org/10.1177/104365962090281 2 united nations children's fund-unicef. (2019a). children on the move, key facts & figures. available online: https://data.unicef.org/resources/childrenmove-key-facts-figures/ (accessed on 24 february 2019). united nations children's fund-unicef. (2019b). child migration – unicef data. available online: https://data.unicef.org/topic/childmigration-and-displacement/migration/ (accessed on 14 april 2020). wilson, r. m., murtaza, r., & shakya, y. b. (2010). pre-migration and post-migration determinants of mental health for newly arrived refugees in toronto. canadian issue, 45. woodgate, r. l., busolo, d. s., crockett, m., dean, r. a., amaladas, m. r., & plourde, p. j. (2017). a qualitative study on african immigrant and refugee families’ experiences of accessing primary health care services in manitoba, canada: it’s not easy! international journal of equity health, 16(1), 5. https://doi.org/10.1186/s12939-0160510x. https://www150.statcan.gc.ca/n1/daily-quotidien https://www.unhcr.ca/in-canada/refugee-statistics/ https://www.unhcr.ca/in-canada/refugee-statistics/ https://doi.org/10 https://doi.org/10 https://data.unicef.org/resources/children-move-key-facts-figures/ https://data.unicef.org/resources/children-move-key-facts-figures/ https://data.unicef.org/topic/child-migration-and-displacement/migration/ https://data.unicef.org/topic/child-migration-and-displacement/migration/ https://doi.org/10.1186/s12939-016-0510x https://doi.org/10.1186/s12939-016-0510x ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 431 table 1. definitions terminology definition children individuals below the age of 18 years first-generation immigrant children children who have migrated from their country of birth to canada as their current country of residence second-generation immigrant children children born in canada that have at least one foreign-born parent refugee children children forced to flee from persecution and who are located outside of their home country mental health a state of well-being in which an individual realizes his or her abilities, can cope with the normal stresses of life, can work productively, and can contribute to the community ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 432 figure 1. prisma flow diagram ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 433 table 2. data extraction # article reference key themes key findings recommendations 1. bakhshaei, m., & henderson, r. i. (2016). pmc4964263; gender at the intersection with race and class in the schooling and wellbeing of immigrant-origin students. bmc women's health, 16, 47. http://dx.doi.org/10. 1186/s12905-0160328-0 parental control (harsh parenting) cultural distance academic performance girls are under more parental control than their brothers, resulting in spending more time at home, the former could have more positive feelings towards school. this view proposed that the school was among the few spaces of freedom and socializing. children who become accustomed to a western individualistic culture can be a challenge for some south asian families in québec, who at the same time encounter major obstacles in their social and economic integration. parental expectations of academic performance are generally higher for girls than for boys, elevating the likelihood of a performance gap. educational policy makers, as well as school and community workers, should call for action that can promote the well-being of immigrant-origin girls through involvement in beneficial processes of acculturation aligned with their improved academic performance. 2. elsayed, d., song, j. h., myatt, e., colasante, t., & malti, t. (2019). anger and sadness regulation in refugee children: the roles of pre-and postmigratory factors. child psychiatry & human development, 50(5), 846-855. https://doi.org/10.10 07/s10578-019interactive relationship of pre-migratory stressor, post-migratory family routines and postmigratory daily stressor on children’s emotional (anger and sadness) regulation immunizing effect: refugee children who experience more pre-migratory life stressors are less impacted by postmigratory daily hassles. they developed strength against later adversity because of their exposure to pre-migratory life experiences. family routines have a conducive effect on children’s anger regulation. greater post-migratory daily hassles were associated with worse sadness regulation for children with lower levels of pre-migratory life stressors. sadness regulation among refugee children is more likely to be internalized and termed as specificity principle, whereby immigrants unique future studies should consider the inclusion of children’s self-reported measure of emotional regulation, which should call for cross-cultural validation of emotional regulation among refugee children. https://doi.org/10.1007/s10578-019-00887-4 https://doi.org/10.1007/s10578-019-00887-4 ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 434 00887-4 circumstances reflect their resettlement experiences and growth in later life. 3. lecompte, v., miconi, d., & rousseau, c. (2018). challenges related to migration and child attachment: a pilot study with south asian immigrant mother– child dyads. attachment & human development, 20(2), 208-222. https://doi.org/10.10 80/14616734.2017.13 98765 maternal anxiety and depression, social support, and national and religious sense of belonging maternal depressive symptoms were related to lower child attachment security scores. the cause of maternal depression and anxiety is related to financial constraints, cultural shock, and separation from country of origin. lower support from friends was related to greater child ambivalent attachment behaviors. the only source of support came solely from the spouse. establishing a new social network in the host country is sometimes a difficult task. a greater sense of belonging to the country of origin was related to greater child disorganized attachment behaviors. immigration is often seen as a loss of familiar relations, including language, values, norms, and social network. screening programs may be important to identify children suffering from insecure attachment with parents. promoting adaptation of parents through different modalities, such as formal socialization groups, and emotional support from other members of the community, may be beneficial for the parent-child dyad. the use of interpreter services may allow parents to participate in therapeutic interventions for their children and thereby promote a greater sense of belonging to the host country. 4. burgos, m., aladeimi, m., & brown, j. (2017). protective factors of family life for immigrant youth. child and adolescent social work journal, 1-11. https://doi.org/10.10 07/s10560-016-04624 protective factors of family life comfortable: family as sources of security, reliability, and support. family aid in the maintenance of ethnic identity at home. routine: youth felt comfortable with the family time they had and time they spent playing and conversing with their siblings. consistency: youth appreciated open communication and the presence of positive feedback at home. social workers can foster youth and familial development through capacity building and encouraging migrant families to use their own resources and means of resilience. by developing greater information on the needs of newcomer youth, researchers can advocate for the development of greater project and service funds for newcomers. https://doi.org/10.1007/s10578-019-00887-4 https://doi.org/10.1080/14616734.2017.1398765 https://doi.org/10.1080/14616734.2017.1398765 https://doi.org/10.1080/14616734.2017.1398765 ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 435 personal space: youth valued their personal space and possession of electronics, video games, and music at home. earn privileges: youth enjoy privileges, such as driving and having a bigger house, which were facilitated by child tax benefit money their parents receive. canadian immigration policies can better support the family reunification process of immigrant families. 5. brabant, l. h., lapierre, s., damant, d., dube-quenum, m., lessard, g., & fournier, c. (2016). immigrant children: their experience of violence at school and community in host country. children & society, 30(3), 241251. https://doi.org/10.11 11/chso.12131 experiences of violence lived by immigrant children forms of violence: physical aggression (hitting and fighting at school, children are abducted and conscripted as soldiers) and verbal abuse (insult, mockery, mean remarks, hurtful words) racial discrimination (comments on skin color and citizenship) children’s emotional reaction to violence: peer aggression, subtler aggression, rejection, social exclusion, isolation effects of violence on emotions and well-being: physical symptoms (fatigue or headache), psychological symptoms (anger, sadness, fear of reoccurrence of violence, discrimination, difficulty in concentration), and low academic performance coping strategies: preferred to do nothing, ignore the situation, running away from the situation, some requested apology, preferred to tell someone often with the goal to seek help to neutralize the aggressor, few turned to god in prayer, unwind and release their tension in physical activity, taking part in cultural and social activities, tried to improve their french or seek solace in spiritual and leisure activities, some relied on warmth and support from their friends and families it is important to work toward the development of an effective implementation of anti-bullying policies and practices that explicitly address racism. especially in school, there is a need to facilitate safe spaces for immigrant children where they can share their stories and build networks. government should invest funds and energy into promoting the implementation of policies that foster cultural diversity and address the social exclusion of immigrant children. awareness campaigns for the recognition of the others could be organized to promote a space for interaction and dialogue between different cultural communities. ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 436 6 beiser, m., & hou, f. (2016). mental health effects of premigration trauma and postmigration discrimination on refugee youth in canada. journal of nervous & mental disease, 204(6), 464470. http://doi.org/10.109 7/nmd.0000000000 000516 mental health effects of premigration trauma and postmigration discrimination on refugee youth refugee youth had higher levels of emotional problems and aggressive behaviour than immigrant youth from the same source countries. there is no relationship between pre-displacement human and social capital and mental health among refugee youth. traumatized mothers suppress the signs of aggression in their children postmigration traumatic experiences had a significant effect on both emotional problems and aggressive behaviour. in fact, post migration discrimination does additional harm. refugee-receiving countries should provide timely treatments for the survivors of refugee trauma. evidence-based information is required to build the professional repertoire of healthcare providers for assessing refugee youth’s need for help. build on screening programs for detecting trauma-related mental health problems among refugee youth. schools must find ways to encourage the creation of both a welcoming atmosphere and anti-visible minority activities, such as celebration of diversity programs, that can halt refugee discrimination at schools. 7. beiser, m., puenteduran, s., & hou, f. (2015). cultural distance and emotional problems among immigrant and refugee youth in canada: findings from the new canadian child and youth study (nccys). cultural distance (cd) and mental health a large difference between culture of origin and the culture of canada had higher scores on emotional problems among immigrant youth. youth with high cd condition perceived more discrimination than youth in the low cd condition. youth in the small cd distance group reported higher levels of instrumental competence (academic performance). study suggests the development of policies and programs to reduce resettlement stress and the sting of discrimination, as well as mental health interventions sensitive to the importance of culture and of cultural distance social services organizations and schools should motivate immigrant youth to develop social skills and encourage them to participate in and ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 437 international journal of intercultural relations, 49, 33-45. https://doi.org/10.10 16/j.ijintrel.2015.06.0 05 social competence (ability to form friendships and to get along with peers) mitigates the adverse effect of cd on mental health of immigrant youth. learn about the culture of their adopted countries while still honoring their heritage; this can help them to meet the challenges of adapting to the new and making sense of the strange. 8. ben-cheikh, i., & rousseau, c. (2013). autism and social support in recently immigrated families: experience of parents from maghreb. santé mentale au québec, 38(1), 189-205. https://doi.org/10.72 02/1019192ar social support from host country the diagnosis of autism spectrum disorder (asd) has a considerable impact on the social network of parents, creating distances and tensions, but also by generating new links and sources of support. group meetings between mothers from the same community who have an autistic child are seen by them as being particularly beneficial. the organization of services is perceived to be deficient because of the waiting time for diagnostic confirmation, bureaucratic complexity, and lack of public sector resources. the relationship to professional services shows that the development of a therapeutic alliance is often difficult because of administrative obstacles and difficulties in terms of intercultural communication. although they have accepted this diagnostic process to help their child, mothers are very concerned about the risk of secondary stigma. a better understanding, by health and social services workers, of the interaction that exists between the migratory context and the weakening of family and social networks associated with a diagnosis of autism in a child from an immigrant family could help reduce loneliness. and the suffering of these parents. it is essential to raise awareness among stakeholders of the importance of empathetic listening, which helps reduce the loneliness and suffering of parents who experience feelings of shame and fear of stigma. further research is needed to better understand the coping strategies of newly immigrated families with a child diagnosed with asd, document the experience of fathers, assess the impact of culturally sensitive support groups on parents, and better understand the experience of health professionals https://doi.org/10.7202/1019192ar https://doi.org/10.7202/1019192ar ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 438 working with immigrant families with a child diagnosed with asd. 9. fellin, m., king, g., esses, v., lindsay, s., & klassen, a. (2013). barriers and facilitators to health and social service access and utilization for immigrant parents raising a child with a physical disability. international journal of migration, health & social care, 9(3), 135-145. https://doi.org/10.11 08/ijmhsc-072013-0024 gnp of country of origin parental and child language competencies social support from host country acculturation and adaptation processes (acceptable gender relations) families who immigrate to canada from resource poor countries may not know about the possibilities for a child with a disability, including their independence and their ability to reach their own goals. language was one of the principal barriers to both service access and utilization, even though many health and social service providers have the use of translators or interpretation services. families experienced financial barriers that included lack of knowledge of the funding available and the need to pay for equipment before being reimbursed from a funding source. parents had fears about the possibility of experiencing discrimination and/or cultural miscommunication. acceptable gender relations differ across cultures; therefore, culturally normative gender relations are central to culturally sensitive care. having a third person, such as a social worker or translator, to help them navigate the system increased positive experiences with accessing and utilizing services. service providers should help their clients or patients be aware of the services available to them. there may be a need for service providers to understand the effects of power imbalances on relations between service providers and immigrant families. appropriate gender relations need to be considered by service providers when working with parents and their children. service providers need to accommodate and work with immigrant parents who have a child with a disability to overcome the barriers to their care. to enhance service experiences, formal support and home services should be provided when possible. 10. hilario, c. t., vo, d. x., johnson, j., & saewyc, e. (2014). acculturation, gender, and mental health of southeast mental health (recent stress, despair, self-harm, suicide, and self-esteem) acculturation (foreignborn status, length of time girls reported significantly higher rates of mental health issues than boys, including self-harm activity, suicidal intent, and attempted suicide. boys and girls who had lived in canada for less than 5 years were more likely to report extreme levels of despair; future research must account for gender and acculturation-related differences in mental health and to assess for protective factors that may help mitigate the negative effects of stressors on adolescent mental health. ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 439 asian immigrant youth in canada. journal of immigration and minority health, (6), 1121-1129. https://doi.org/10.10 07/s10903-014-9978x in canada, and language spoken at home) protective factors (family connectedness, school connectedness, and ethnic identity connectedness) girls in canada for less than 10 years were also more likely to report extreme despair as well as extreme stress. significant protective factors for boys and girls were family connectedness for both stress and despair as well as school connectedness but only among girls. higher levels of ethnic identity connectedness were associated with lower odds of despair among boys but higher odds of stress among girls. 11. beiser, m., goodwill, a. m., albanese, p., mcshane, k., & nowakowski, m. (2014). predictors of immigrant children's mental health in canada: selection, settlement contingencies, culture, or all of the above? social psychiatry & psychiatric epidemiology, 49(5), 743-756. http://dx.doi.org/10. 1007/s00127-0130794-8 arrival characteristics (child age at arrival, arrival language fluency, arrival assistance from family), settlement contingencies (parental depression and somatization, settlement stress, separation from parent, poverty) cultural factors (one-child household, harsh and supportive parenting) arrival characteristics: children’s age and gender, together with parent’s human and social capital characteristics, have a weak and inverse relationship with respect to explaining emotional problems among immigrant children. settlement contingencies and culture proved to be powerful influences on immigrant children’s mental health. harsh parenting is a risk factor while supportive parenting is a protective factor for the younger group. future studies should consider factors such as the meaning and nature of separation as well as the arrangements made for the child in his or her parent’s absence that affect immigrant mental health outcomes. ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 440 12. kronick, r., rousseau, c., & cleveland, j. (2015). asylum-seeking children's experiences of detention in canada: a qualitative study. american journal of orthopsychiatry, 85(3), 287-294. http://dx.doi.org/10. 1037/ort0000061 post migratory contingencies (child detention) family separation caused by detention emerged as a prominent concern for the child such as earlier traumatic separations, represented a new post-migratory stressor. parents highlighted that children’s reactions, including those of infants and older teenagers, suggest the constraining and frightening environment of detention is acutely distressing for children. most families reported ongoing emotional distress, such as separation anxiety, selective mutism, sleep difficulties, and posttraumatic symptoms in their children after detention. immigration detention is an acutely stressful and potentially traumatic experience for children. for children seeking asylum in canada, detention is highly distressing and often traumatic. children reacted to detention with extreme. distress, fear, and a deterioration of functioning, leaving children with psychiatric and academic difficulties long after detention. children should not be detained for immigration reasons and parents should not be detained without children. children, regardless of immigration status, should be protected from detention and should also be spared forced separation from their parents. policies mindful of children’s best interests should mandate alternative practices to detention. further research could support this advocacy process but should not delay a strong collective stance from health professionals to protect children from immigration detention. 13 kwak, k., & rudmin, f. (2014). adolescent health and adaptation in canada: examination of gender and age aspects of the healthy immigrant effect. international journal for equity in healthy immigrant effect and adaptation (daily life stressors, life satisfaction, and sense of belonging) among immigrant adolescents immigrant adolescents were healthier without showing adaptation problems compared to their native-born nonimmigrant counterparts. girls reported more stress and chronic psychosomatic illnesses; however, their reports on psychological illness and life satisfaction were not different from those of boys. adolescent boys regardless of their immigrant status felt a weaker sense of belonging to community. findings suggest that prevention and intervention strategies need to be age and gender appropriate to assist adolescent’s well-being. there is a need to identify to what extent social capital and resources are available and accessible to immigrant adolescents for their adaptation processes. ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 441 health, 13(1), 103. https://doi.org/10.11 86/s12939-014-01035 immigrant adolescents did not report their well-being differently with respect to their length of residence. 14 beiser, m., taa, b., fenta-wube, h., baheretibeb, y., pain, c., & araya, m. (2012). a comparison of levels and predictors of emotional problems among preadolescent ethiopians in addis ababa, ethiopia, and toronto, canada. transcultural psychiatry, 49(5), 651-677. p predictors of emotional problem among immigrant youth toronto sample reported higher levels of emotional problems. the predictors are person most knowledgeable (pmk) depression, levels of dissonance regarding ethnocultural retention, perceived prejudice, and perceived discrimination. redmond (2008, p. 1) suggests that ‘‘what concerns children is not lack of resources per se, but exclusion from activities that other children appear to take for granted, and embarrassment and shame at not being able to participate on equal terms with other children.’’ future research should explore contextually shaped meanings of poverty as well as strengths within children and their families that account for their apparent resilience in the face of distressing circumstances. 15. oxman‐martinez, j., rummens, a. j., moreau, j., choi, y. r., beiser, m., ogilvie, l., & armstrong, r. (2012). perceived ethnic discrimination and social exclusion: newcomer immigrant children in canada. american perceived ethnic discrimination (discrimination by peers and teachers) social exclusion (psychological, social, and economic isolation) psychosocial functioning (self-esteem and sense of social competence) peer discrimination includes direct forms of hostile behaviors—hitting, name calling, pushing, being insulted in front of people, and threatening—as well as indirect forms of hostile behaviors. boys present higher scores on the perceived discrimination by peers’ scale than girls. perceived discriminatory behaviors by teachers at school; significant differences were found according to ethnicity, and they felt they had been treated unfairly by teachers at school because of the way they look or speak. it will be important to explore whether and why newcomer immigrant girls appear to follow or to adjust to the mainstream more quickly and successfully than boys. school systems should strive to better socially integrate newcomer children within a pluralistic society • awareness and sensitivity training to staff, educator, and teachers https://doi.org/10.1186/s12939-014-0103-5 https://doi.org/10.1186/s12939-014-0103-5 https://doi.org/10.1186/s12939-014-0103-5 ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 442 journal of orthopsychiatry, 82(3 ), 376. https://doi.org/10.11 11/j.19390025.2012.01161.x academic performance (sense of academic competence and factual academic grades) the psychological isolation variable was negatively correlated with all psychosocial functioning and academic performance variables. a negative correlation was also found between the social isolation and academic performance variables. perceived discrimination by teachers was found to predict lower sense of social competence in peer relationships, lower self-esteem, and less sense of academic competence. • use of multicultural teaching and learning material • facilitating dialogue between multicultural peers • organizing immigrant parents outreach programs and foster participation into school event • protected funding for secondlanguage esl programming policies and programs should appreciate and value social otherness to advance social integration and avoiding exclusion and discrimination. 16 beiser, m., zilber, n., simich, l., youngmann, r., zohar, a. h., taa, b., & hou, f. (2011). regional effects on the mental health of immigrant children: results from the new canadian children and youth study (nccys). health & place, 17(3), 822-829. http://dx.doi.org/10. 1016/j.healthplace.20 11.03.005 immigrant human and social capital (parental language at arrival, social support in the host country, and pmk depression) institutional receptivity (annual household income, work related stress, home school relationship) perception of welcome (marginalization, neighborhood social organization) language level at arrival, social support, and parental depression – made an independent and statistically significant contribution to predicting children's ep. neither income nor work-related stress proved significant predictors of ep. both marginalization and neighborhood quality made independent, statistically significant contributions to ep. these findings direct attention to the importance of developing home-school ties and of repairing those that have frayed. outreach to immigrant parents should be an important priority for schools, with due recognition that immigrant parents and school personnel might disagree about what constitutes a positive school environment. https://doi.org/10.1111/j.1939-0025.2012.01161.x https://doi.org/10.1111/j.1939-0025.2012.01161.x https://doi.org/10.1111/j.1939-0025.2012.01161.x ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 443 dependent variable: emotional problem (ep) 17 hamilton, h. a., marshall, l., rummens, j. a., fenta, h., & simich, l. (2011). immigrant parents' perceptions of school environment and children's mental health and behavior. journal of school health, 81(6), 313319. http://doi.org/10.111 1/j.17461561.2011.00596.x parents’ perceptions of school environment and children’s emotional and behavioral problems higher parental perception of school was associated with less emotional distress and physical aggression among immigrant children regardless of family dysfunction, parental depression, and select characteristics of the child. parental depression had the strongest influence on emotional distress in children, and ethnicity had the most influence on the association between perception of school and emotional distress in children. higher child perception of schools was associated with fewer emotional problems in children. longitudinal data are necessary to determine the direction of the relationship and test the possible mechanisms through which the relationship occurs. identifying the critical relationship between parents and schools offers an opportunity to strengthen social supports that help parents adapt and in turn to promote child emotional health and behavior. establishing open lines of communication with new immigrant parents so that their needs and concerns can be addressed. 18 montazer, s., & wheaton, b. (2011). the impact of generation and country of origin on the mental health of children of immigrants. journal of health & social behavior, 52(1), 2342. http://dx.doi.org/10. country of origin and adaptation process across immigrant generations gnp: gross national product the healthy immigrant effect in the first-generation group from lower gnp origins is due primarily to lower family conflict and higher parental care and secondarily to the lower prevalence of disliking school and higher academic performance of the children in this group. the higher rate of reported externalizing problems in the 2.5-generation children from low-gnp origins is due more specifically to higher family conflict and lower parental care and less to issues of school involvement. both immigrant mothers with premigration affective problems and native-born mothers with early affective gnp is a marker of more than economic development; it does not account for cultural differences that are very important for migration and adjustment processes. http://dx.doi.org/10.1177/0022146510395027 ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 444 1177/0022146510395 027 problems are associated with higher internalizing and externalizing symptoms; and higher maternal education and household income are associated with lower levels of externalizing and internalizing problems. the conditional adaptation approach emphasizes the fact that children from higher, and therefore similar, gnp backgrounds do not face an adjustment process that affects their mental health, in part because the task of adjustment itself is informed by greater knowledge, similarity, and awareness of host country practices. but for immigrants from lower gnp backgrounds, there is more to learn, more uncertainty, possibly more discrimination and often a greater cultural distance to bridge. 19 oxman-martinez, j., & choi, y. r. (2014). discrimination, relationships and ethnic identity as predictors of selfesteem and social competence among early adolescent immigrants in canada. handbook in the psychology of self-esteem. nova science publishers inc.: new york (pp. 103-122). post-migratory contingencies (experiences of violence and discrimination at school and neighborhood) familial contingencies (conflict and connectedness) cultural connectedness (ethnic identity) perceived discrimination by peers and teachers within school and community contexts was a significant predictor of poor psychosocial functioning among immigrant adolescents, indicating that perceived discrimination was negatively related to self-esteem and social competence. the parent-adolescent relationship had significant influence on immigrant adolescents’ self-esteem and social competence. immigrant youth with positive parental relationships showed better self-esteem and greater social competence. despite the potential conflicts within immigrant families, such as resettlement stress and acculturation, family continues to be a consistent source of protection from poor psychosocial functioning of immigrant youth in early adolescence. programs aimed at healthy adolescent development should be increased in immigrant families. such programs should focus on enhancing parentadolescent relationships and providing support for immigrant families in the adaptation process. government policy could also be revised to reflect the trend in acculturation and its adaptation outcomes so that support services may be effectively designed and appropriate. in order to provide immigrant adolescents with a better educational environment, it is necessary to http://dx.doi.org/10.1177/0022146510395027 http://dx.doi.org/10.1177/0022146510395027 ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 445 positive perception of school environments measured by the school-home relationship scale was significantly related to adolescents‟ self-esteem and social competence. these findings offer support for the claim that positive school experiences influence immigrant students’ psychosocial functioning and direct attention to the importance of developing positive school-home relationships. ethnic identity was found to significantly influence early adolescents’ self-esteem and social competence among immigrant groups. youth with a strong sense of ethnic identity reported higher self-esteem and greater social competence. both relationship domains, parent-adolescent and schoolhome relationships, are consistently associated with positive youth outcomes. ethnic identity has a significant effect on self-esteem and social competence of immigrant youth. significant variations across ethnic groups are also found in parentchild relationships, school-home relationships, and ethnic identity as well as social competence. discrimination, relationship factors, and ethnic identity are critical factors affecting self-esteem and social competence of early adolescent immigrants. establish school policies embodying the principles of diversity, equity, and multicultural education as part of the daily classroom and school environment, as well as adapting the curriculum and providing teacher supports that address immigrant students‟ real needs. future longitudinal research of the nccys may allow better understanding of relations between the risk factors and negative outcomes. future research of culturally relevant and developmentally sensitive longitudinal studies on specific cultural processes at the developmental stages across the life span is needed to uncover critical periods of risk and vulnerability, potential for resilience, as well as optimal opportunities for healthy development of immigrant youth. knowledge will enable the development of more effective policies and programs aimed at helping immigrating youth cope with their unique challenges. research, intervention, and social policy at different governmental levels must focus on the psychosocial well ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 446 being, developmental potential and successful integration of immigrant youth and their parents into the host society while respecting their cultures, histories, beliefs, and migration experiences. 20 beiser, m., hamilton, h., rummens, j. a., oxman-martinez, j., ogilvie, l., humphrey, c., et al. (2010). predictors of emotional problems and physical aggression among children of hong kong chinese, mainland chinese and filipino immigrants to canada. social psychiatry & psychiatric epidemiology, 45(10), 1011-1021. https://doi.org/10.10 07/s00127-009-01403 universal factors (age, gender family and neighborhood characteristics) migration-specific factors (ethnic background, acculturative stress, prejudice, region of settlement) dependent variable: emotional problems (ep) and physical aggression (pa) pmk depression and familial dysfunction made significant and independent contributions to ep. pmk inability to speak one of canada’s official languages, resettlement stress, and perceptions of prejudice each increased the risk for children’s ep. acculturation stress and perceived prejudice made significant and independent contributions to explaining physical aggressiveness scores. younger children were more likely than older to be physically aggressive, and boys more likely to display pa than girls. future nccys studies will attempt more in-depth explorations of the following. • the relationships between region of resettlement and children’s well-being • the relationships between parental absences and children’s mental health risk. call for special training programs for service providers, including the need to plan for family life postreunification initiatives. 21 berry, j. w., & sabatier, c. (2010). acculturation, discrimination, and acculturation, discrimination, and adaptation youth who involve themselves in both their heritage culture and that of the national society (by way of integration) have the most positive psychological wellbeing, and are most adjusted in school and in the longitudinal research is required to better understand the relationships, and causal links between acculturation ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 447 adaptation among second generation immigrant youth in montreal and paris. international journal of intercultural relations, 34(3), 191207. doi:10.1016/j.ijintrel. 2009.11.007 community; in contrast, those who are minimally involved with either culture (the marginalization course), are least well-adapted; and those who are primarily oriented towards one or the other culture (assimilation or separation) generally fall in between these two adaptation poles. they affirm that adaptation is the outcome of acculturation strategies and discrimination. this is because when people are threatened (for example by pervasive discrimination) they will reciprocate their rejection by the larger society by expressing a negative view towards those who discriminate against them. strategies and experiences and adaptation 22 costigan, c. l., koryzma, c. m., hua, j. m., & chance, l. j. (2010). ethnic identity, achievement, and psychological adjustment: examining risk and resilience among youth from immigrant chinese families in canada. cultural diversity & ethnic minority psychology, 16(2), 264-273. http://dx.doi.org/10. 1037/a0017275 ethnic identity, achievement, and psychological adjustment stronger feelings of ethnic identity (affirmation and belonging and ethnic identity achievement) were associated with higher levels of self-esteem and fewer symptoms of depression. in addition, stronger feelings of ethnic affirmation and belonging were associated with higher grade point averages. in terms of achievement, a strong sense of ethnic identity may provide youth with motivation to work hard in school and a sense of meaning to their academic goals. immigrant youth could be encouraged to participate in events and festivals based in their ethnocultural community. initiatives to promote ethnic identity in schools may include offering classes in ethnic studies and ethnic languages and supporting the formation of ethnic clubs. schools that promote ethnic identity awareness and foster a sense of acceptance for cultural diversity provide a safe place for youth to explore their ethnic identity with peers. ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 448 23 tulli, m., et al. (2020). immigrant mothers' perspectives of barriers and facilitators in accessing mental health care for their children. journal of transcultural nursing: official journal of the transcultural nursing society, 31(6), 598-605. https://doi.org/10.11 77/104365962090281 2. access to healthcare (lack of information, stigma, financial strain) social support from host country financial strain made it difficult for mothers to access services for their children; they felt limited by the high costs of programs and services due to low incomes. lack of information about the healthcare system and available services was a key barrier for mothers, reporting frustration about not knowing where to find resources and feeling unsupported by policy makers and service providers. mothers said they did not feel listened to by either schools or service providers and they felt ignored by service providers said their children were evaluated based on questionnaires, rather than taking into consideration the mother’s knowledge about her children. language barriers were often connected to both issues of racism and discrimination and a lack of information. mothers cited having difficulty communicating with their child’s pediatrician, having to depend on family members for communication, and often not being able to understand medical terminology, which created feelings of dependency, isolation, and powerlessness, negatively affecting their relationships with their child or spouse (whoever was translating for them). stigma around mental health and the fear of having their child labelled was a factor that made it hard for them to seek mental health services. this made them feel isolated because they felt they could not talk about their children’s needs or ask for information from their community. mothers felt isolated from both the general community in canada and from their family in their country of origin, parent centered knowledge and culturally appropriate care delivery, as well as more effective information transmission and bridging between immigrant and healthcare policy realms are important to dissolve immigrant children’s barriers to access. nurses can improve access to mental health services by addressing issues related to racism within the health system, by creating awareness related to mental health, and by providing trained interpreters to help bridge barriers in communications. further research to determine the effectiveness of increased funding for recreation and sports in preventing poor mental health outcomes for this population is also needed. ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 449 which influenced their capacity to access mental health services for their children. financial strain, fear of stigma, and experiences of discrimination all posed significant barriers to their children’s access to important services and were often interrelated. schools offering services or coordinating the provision of service usually organized by teachers or principals made this factor the most commonly cited facilitator of access to mental health services. mothers who had positive experiences with schools reported being well-equipped to access care for their children. mothers’ personal levels of higher education helped them to promote their children’s mental health and access services when needed. their educational backgrounds included healthcare, education, and psychology, which are especially pertinent to child mental health. education was thus helpful for these mothers, they had training to care for their children themselves and were better positioned to know their rights in canada, to resist discrimination, and to access services. mothers who were able to access free services, such as sports and recreation, speech language pathologists, occupational therapists, psychologists, and libraries, were able to promote their children’s mental well-being or better treat their mental illness issues. services that were free greatly enhanced participants’ ability to access them. they also afforded them the time or resources to more effectively ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 450 take on other barriers, such as lack of information and isolation. 24 mcrae, d.n., et al. (2020). immigrant and ethnic neighbourhood concentration and reduced child developmental vulnerability: a canadian cohort study. international journal of population data science, 5(1), 1147. https://doi.org/10.23 889/ijpds.v5i1.1147. post migratory contingencies (experiences of violence and discrimination at school and neighbourhood) neighbourhoods with discordant-lower vulnerability in social competence were 30% less likely to have residents receiving social assistance. neighbourhoods with discordant-higher vulnerability in social competence were more likely to have residents receiving social assistance. there was no statistically significant effect associated with immigrant concentration or ethnic diversity when comparing these two types of neighbourhoods. neighbourhoods with discordant-lower vulnerability in emotional maturity were 17% more likely to have residents with a high school diploma as their highest credential. neighbourhoods with discordant-higher vulnerability in emotional maturity were 33% more likely to have residents who were receiving social assistance. neighbourhoods in which children had discordant-lower vulnerability in language and cognitive development than that predicted by income were less likely to have residents receiving social assistance. neighbourhoods with discordant-higher vulnerability in language and cognitive development were more likely to have social assistance recipients. neighbourhoods with discordant-lower vulnerability in communication skills and general knowledge were less likely to have residents with dwellings in need of major repair. neighbourhoods with discordant-higher neighbourhood-level policy and programming should address both income and non-income related barriers to healthy child development and importance of both the social and physical environment in shaping early childhood development. future research is needed to specifically test social cohesion as a mechanism linking neighbourhoodlevel immigrant concentration and low ethnic diversity to less child developmental vulnerability. research should also focus on which immigrant/ ethnic groups are experiencing more favourable outcomes than predicted and under what conditions. ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 451 vulnerability in communication skills and general knowledge had higher odds of residents receiving social assistance. neighbourhood immigrant concentration and ethnic composition was significantly associated with neighbourhood-level discordant-lower developmental vulnerability, compared to concordant vulnerability. across all five domains the most consistent neighbourhood characteristic associated with discordant lower vulnerability was ethnic homogeneity, with levels of immigrant concentration only marginally influencing predicted probabilities. in other words, areas where inhabitants were of similar ethnicity had, on average, lower levels of child developmental vulnerability than those with diverse ethnicity. in two domains (language and cognitive development and communication skills and general knowledge), immigrant concentration predicted discordanthigher vulnerability. high or low immigrant concentration and ethnic homogeneity was associated with less likelihood of child developmental vulnerability at a neighbourhood-level. it may be that the benefits of shared language and culture (e.g., parenting styles and religious beliefs) encourage a sense of neighbourhood social cohesion, fostering children’s cultural identity, promoting child development. 25 kronick, r., rousseau, c. & cleveland, j. (2018). refugee children's post migratory contingencies (child detention) confinement and surveillance as incarceration causes traumatic events in refuge children’s lives, including other post-migratory stressors such as precarious status or evidence-based policy must protect children from detention itself. ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 452 sandplay narratives in immigration detention in canada. european child & adolescent psychiatry 27(4), 423437. https://doi.org/10.10 07/s00787-017-10120. limitations on liberty while being monitored by bondspersons. children’s sense of fear and threat, protection and safety, suggesting ambivalent feelings towards the host society, which was viewed as a safe haven but also as potentially dangerous. the children’s awareness of loss of protection even in the context of a hope that migration will bring a better life. in the face of parents’ and families’ powerlessness to change their circumstances and to imagine worlds in which there is a restoration of benevolence and order even in the presence of threat. children spoke of fears of being harmed by police and other aggressive forces in their new home. the children in the study were grappling with past experiences of atrocities which may have been re-evoked by detention. the absences in children’s real lives, such as absence of proper education, socialization and protective forces. children’s mixed feelings towards canada as newcomers facing detention implies that immigration detention practices may shape newcomers’ relationship with the host country and influence their social integration. children’s perspectives confirm the harmful consequences of detention and the reality that children who are detained have often experienced tremendous adversity prior to the separation of children from parents to enable the detention of parents must also be prohibited to prevent the harms of family separation. community-based alternatives to detention should be developed and implemented locally and internationally. children’s best interests should be a primary consideration for all responsible decisionmakers from governments to tribunal members to cbsa officers and guards. this will require training at all levels so that the multifactorial assessment of children’s interests is informed by an understanding of children’s detention experiences, mental health consequences of detention, as well as trauma, migration and attachment. independent oversight mechanisms are also needed to assure that the basic rights of children and families subject to border control policies are protected, including the right to family life, education and health. clinicians may pave the way for important policy-level change by working as advocates for individual ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 453 arrival in canada. detention can be a toxic stress that may interfere with children’s capacity to recover from previous harm and psychopathology. families and children impacted by immigration detention. this involves taking into account the adverse effects of immigration detention in the provision of care for migrant families as well finding ways to serve children and families who are detained and advocate for their health and safety. further research is needed to understand the long-term impact of detention for children and its interaction with previous trauma. 26 george, m. a., & bassani, c. (2018). influence of perceived racial discrimination on the health of immigrant children in canada. journal of international migration and integration, 19(3), 527-540. http://dx.doi.org.logi n.ezproxy.library.ualb erta.ca/10.1007/s121 34-018-0539-3 post migratory contingencies (experiences of violence and discrimination at school and neighbourhood) racial discrimination has an influence on children’s health; the relationship between discrimination and health is complex. cultural discrimination had a negative effect on the child’s parent-rated health. children (and their families) are able to more easily mitigate negative health consequences associated with low levels of culture-based discrimination. perceived racial discrimination is complex. its influence on either increasing family cohesion, and thereby leading to improved health, or increasing stress, thereby leading to poorer health needs to be explored further. discrimination may act as a catalyst that more tightly binds and bridges family and possibly ethnic community ties. future work is needed to examine the growth of this social capital and its relationship with discrimination and health. more research across various countries and contexts is needed to understand the complex effects of racial discrimination on children’s health. ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 454 27 comeau, j., et al. (2019) changes in the prevalence of child and youth mental disorders and perceived need for professional help between 1983 and 2014: evidence from the ontario child health study. canadian journal of psychiatry. 64(4), 256-264. https://doi.org/10.11 77/070674371983003 5. perceived need for professional help the prevalence of any disorder decreased among children living in immigrant families but not nonimmigrant families and relative increases in perceived need for professional help were lower among children in immigrant versus nonimmigrant families. the prevalence of any disorder and perceived need for professional help was much lower for immigrant versus nonimmigrant children and youth in 2014 compared to 1983. there should be continued need for effective and efficient prevention and intervention programs. there is a need for longitudinal studies that follow immigrant children and youth over time to better understand if their mental health advantages persist into adulthood. ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 455 table 3. study characteristics characteristics references total included studies 27 research studies that met the inclusion criteria bakhshaei & henderson, 2016; beiser & hou, 2016; beiser et al., 2010, 2011, 2012, 2014, 2015; ben-cheikh & rousseau, 2013; berry & sabatier, 2010; brabant et al., 2016; burgos et al., 2017; comeau et al., 2019; costigan et al., 2010; elsayed et al., 2019; fellin et al., 2013; george & bassani, 2018; hamilton et al., 2011; hilario et al., 2014; kronick et al., 2015, 2018; kwak & rudmin, 2014; lecompte et al., 2018; mcrae et al., 2020; montazer & wheaton, 2011; oxman-martinez & choi, 2014; oxman‐martinez et al., 2012; tulli et al., 2020 study design 20 were quantitative studies (all studies used nonexperimental correlational design) (sample sizes ranged from 33 to 14283) beiser & hou, 2016; beiser et al., 2011, 2012, 2014, 2015; berry & sabatier, 2010; brabant et al., 2016; comeau et al., 2019; costigan et al., 2010; elsayed et al., 2019; george & bassani, 2018; hamilton et al., 2011; hilario et al., 2014; kwak & rudmin, 2014; lecompte et al., 2018; mcrae et al., 2020; montazer & wheaton, 2011; oxman-martinez & choi, 2014; oxman‐martinez et al., 2012 6 were qualitative studies (sample sizes ranged from 5 to 20) ben-cheikh & rousseau, 2013; burgos et al., 2017; fellin et al., 2013; kronick et al., 2015, 2018; tulli et al., 2020 1 was a mixed method study bakhshaei & henderson, 2016 study participants 19 included studies focused on immigrants (mainland china, hong kong, the philippines, bangladesh, and india) bakhshaei & henderson, 2016; beiser et al., 2010, 2011, 2014; ben-cheikh & rousseau, 2013; berry & sabatier, 2010; brabant et al., 2016; burgos et al., 2017; comeau et al., 2019; costigan et al., 2010; fellin et al., 2013; george & bassani, 2018; hamilton et al., 2011; hilario et al., 2014; kwak & rudmin, 2014; mcrae et al., 2020; montazer & wheaton, 2011; oxman-martinez & choi, 2014; oxman‐martinez et al., 2012 6 included studies focused on refugees (ethiopia, syria, somalia, sudan, haiti, ukraine, serbia, afghanistan, sri lanka, iran, colombia) beiser & hou, 2016; beiser et al., 2012, 2015; elsayed et al., 2019; kronick et al., 2015, 2018 2 articles included both immigrants and refugees lecompte et al., 2018; tulli et al., 2020 location of study 6 articles were from ontario beiser et al., 2012; comeau et al., 2019; fellin et al., 2013; hamilton et al., 2011; kronick et al., 2015; montazer & wheaton, 2011 ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 456 5 articles were from québec bakhshaei & henderson, 2016; ben-cheikh & rousseau, 2013; brabant et al., 2016; lecompte et al., 2018; oxman-martinez & choi, 2014 3 articles were from british columbia george & bassani, 2018; hilario et al., 2014; mcrae et al., 2020 1 article was from from alberta tulli et al., 2020 3 articles did not specify a location burgos et al., 2017; elsayed et al., 2019; kwak & rudmin, 2014 9 articles spanned several canadian provinces beiser & hou, 2016; beiser et al., 2010, 2011, 2014, 2015; berry & sabatier, 2010; costigan et al., 2010; kronick et al., 2018; oxman‐martinez et al., 2012 study participants’ age group 9 studies included parents as study participants ben-cheikh & rousseau, 2013; costigan et al., 2010; elsayed et al., 2019; fellin et al., 2013; hamilton et al., 2011; kronick et al., 2015; lecompte et al., 2018; mcrae et al., 2020; tulli et al., 2020 10 studies included adolescents (age range 14-18) bakhshaei & henderson, 2016; beiser & hou, 2016; beiser et al., 2015; berry & sabatier, 2010; brabant et al., 2016; burgos et al., 2017; hilario et al., 2014; kwak & rudmin, 2014; montazer & wheaton, 2011; oxmanmartinez & choi, 2014 8 studies included children (age range 5-13) beiser et al., 2010, 2011, 2012, 2014; george & bassani, 2018; kronick et al., 2018; montazer & wheaton, 2011; oxman‐martinez et al., 2012 1 study included parents and teachers comeau et al., 2019 new canadian child and youth study (nccys) 9 studies reported findings [2076 immigrant and refugee youth aged 11-13 belonging to 16 different ethnocultural groups (hong kong chinese, mainland chinese, filipino, ethiopian, somali, caribbean, serbian, vietnamese, lebanese, haitian, latin american, kurdish, iranian, punjabi, sri lankan tamil, and afghani)] beiser & hou, 2016; beiser et al., 2010, 2011, 2012, 2014, 2015; hamilton et al., 2011; oxman-martinez & choi, 2014; oxman‐martinez et al., 2012 ihtp, 1(3), 418-457, 2021 cc by-nc-nd 4.0 issn 2563-9269 457 table 4. conceptualization of mental health used in the studies conceptualization of mental health reference depression, somatization, resettlement stress, and perception of prejudice beiser et al., 2010, 2011, 2014 psychological distress and interpersonal strain and anxiety lecompte et al., 2018 disturbed sadness regulation elsayed et al., 2019 stress and despair hilario et al., 2014 weak adaptation and a low sense of belonging to community beiser et al., 2011, 2014; kwak & rudmin, 2014 perception of psychological and social isolation oxman-martinez et al., 2012 lower self-esteem and symptoms of depression costigan et al., 2010 impaired school performance, cognitive functioning, and emotional regulation brabant et al., 2016; oxman-martinez et al., 2012 impaired psychosocial functioning (self-esteem and social competence) oxman-martinez & choi, 2014 low sense of belonging and disorganized attachment behaviours lecompte et al., 2018 delinquency and aggression, and internalizing difficulties, such as somatic complaints, withdrawal syndrome montazer & wheaton, 2011 physical aggression beiser et al., 2014 emotional disorders and hyperactivity comeau, 2019 autism ben-cheikh & rousseau, 2013 separation anxiety, selective mutism, and sleep disturbances; worsened posttraumatic symptoms such as interrupted sleep, temper tantrums, and fear in children kronick et al., 2018 arksey, h., & o'malley, l. (2005). scoping studies: towards a methodological framework. international journal of social research methodology, 8(1), 19-32. https://doi.org/10.1080/1364557032000119616 bakhshaei, m., & henderson, r. i. (2016). gender at the intersection with race and class in the schooling and wellbeing of immigrant-origin students. bmc women's health, 16, 47. https://doi.org/10.1186/s12905-016-0328-0 barozzino, t. (2010). immigrant health and the children and youth of canada: are we doing enough? healthcare quarterly, 14, 52-59. https://doi.org/0.12927/hcq.2010.21983 beiser, m., & hou, f. (2016). mental health effects of pre-migration trauma and post-migration discrimination on refugee youth in canada. journal of nervous and mental disease, 204(6), 464-470. https://doi.org/10.1097/nmd.0000000000000516 beiser, m., hamilton, h., rummens, j. a., oxman-martinez, j., ogilvie, l., humphrey, c., & armstrong, r. (2010). predictors of emotional problems and physical aggression among children of hong kong chinese, mainland chinese and filipino immigrants to ... beiser, m., zilber, n., simich, l., youngmann, r., zohar, a. h., taa, b., & hou, f. (2011). regional effects on the mental health of immigrant children: results from the new canadian children and youth study (nccys). health & place, 17(3), 822-829. ht... beiser, m., taa, b., fenta-wube, h., baheretibeb, y., pain, c., & araya, m. (2012). a comparison of levels and predictors of emotional problems among preadolescent ethiopians in addis ababa, ethiopia, and toronto, canada. transcultural psychiatry, 49(... beiser, m., goodwill, a. m., albanese, p., mcshane, k., & nowakowski, m. (2014). predictors of immigrant children's mental health in canada: selection, settlement contingencies, culture, or all of the above? social psychiatry and psychiatry epidemiolo... beiser, m., puente-duran, s., & hou, f. (2015). cultural distance and emotional problems among immigrant and refugee youth in canada: findings from the new canadian child and youth study (nccys). international journal of intercultural relations, 49, 3... ben-cheikh, i., & rousseau, c. (2013). autism and social support in recently immigrated families: experience of parents from maghreb. santé mentale au québec, 38(1), 189-205. https://doi.org/10.7202/1019192ar berry, j. w., & sabatier, c. (2010). acculturation, discrimination, and adaptation among second generation immigrant youth in montreal and paris. international journal of intercultural relations, 34(3), 191-207. https://doi.org/10.1016/j.ijintrel.2009... bhayana, a., & bhayana, b. (2018). approach to developmental disabilities in newcomer families. canadian family physician, 64(8), 567-573. brabant, l. h., lapierre, s., damant, d., dube-quenum, m., lessard, g., & fournier, c. (2016). immigrant children: their experience of violence at school and community in host country. children and society, 30(3), 241-251. https://doi.org/10.1111/chso... brassart, e., prévost, c., bétrisey, c., lemieux, m., & desmarais, c. (2017). strategies developed by service providers to enhance treatment engagement by immigrant parents raising a child with a disability. journal of child and family studies, 26(4),... burgos, m., al-adeimi, m., & brown, j. (2017). protective factors of family life for immigrant youth. child and adolescent social work journal, 1-11. https://doi.org/10.1007/s10560016-0462-4 canadian council for refugees. (2020). refugees and immigrants: a glossary. available online: https://ccrweb.ca/en/glossary (accessed on 13 march 2020) comeau, j., georgiades, k., duncan, l., wang, l., boyle, m. h., & 2014 ontario child health study team. (2019). changes in the prevalence of child and youth mental disorders and perceived need for professional help between 1983 and 2014: evidence from... corneau, s., & stergiopoulos, v. (2012). more than being against it: anti-racism and anti-oppression in mental health services. transcultural psychiatry, 49(2), 261-282. https://doi.org/10.1177/1363461512441594 costigan, c. l., koryzma, c. m., hua, j. m., & chance, l. j. (2010). ethnic identity, achievement, and psychological adjustment: examining risk and resilience among youth from immigrant chinese families in canada. cultural diversity and ethnic minorit... edge, s., & newbold, b. (2013). discrimination and the health of immigrants and refugees: exploring canada’s evidence base and directions for future research in newcomer receiving countries. journal of immigration and minority health, 15(1), 141-148. ... elsayed, d., song, j. h., myatt, e., colasante, t., & malti, t. (2019). anger and sadness regulation in refugee children: the roles of pre-and post-migratory factors. child psychiatry and human development, 50(5), 846-855. https://doi.org/10.1007/s105... fellin, m., king, g., esses, v., lindsay, s., & klassen, a. (2013). barriers and facilitators to health and social service access and utilization for immigrant parents raising a child with a physical disability. international journal of migration heal... gary, f. a. (2005). stigma: barrier to mental health care among ethnic minorities. issues in mental health nursing, 26(10), 979-999. https://doi.org/10.1080/01612840500280638 george, m. a., & bassani, c. (2018). influence of perceived racial discrimination on the health of immigrant children in canada. journal of international migration and integration, 19(3), 527-540, https://doi.org/10.1007/s12134-018-0539-3 hamilton, h. a., marshall, l., rummens, j. a., fenta, h., & simich, l. (2011). immigrant parents' perceptions of school environment and children's mental health and behavior. journal of school health, 81(6), 313-319. https://doi.org/10.1111/j.1746-156... hilario, c. t., vo, d. x., johnson, j. l., & saewyc, e. m. (2014). acculturation, gender, and mental health of southeast asian immigrant youth in canada. journal of immigration and minority health, 16(6), 1121-1129. https://doi.org/10.1007/s10903-014-... kalich, a., heinemann, l., & ghahari, s. (2016). a scoping review of immigrant experience of health care access barriers in canada. journal of immigration and minority health, 18(3), 697-709. https://doi.org/10.1007/s10903-015-0237-6 kroening, a. l., moore, j. a., welch, t. r., halterman, j. s., & hyman, s. l. (2016). developmental screening of refugees: a qualitative study. pediatrics, 138(3), https://doi.org/10.1542/peds.2016-0234 kronick, r., rousseau, c., & cleveland, j. (2015). asylum-seeking children's experiences of detention in canada: a qualitative study. american journal of orthopsychiatry, 85(3), 287-294. https://doi.org/10.1037/ort0000061 kronick, r., c. rousseau, & cleveland, j. (2018). refugee children's sandplay narratives in immigration detention in canada. europrean child and adolescent psychiatry, 27(4), 423-437, https://doi.org/10.1007/s00787-017-1012-0 kwak, k., & rudmin, f. (2014). adolescent health and adaptation in canada: examination of gender and age aspects of the healthy immigrant effect. international journal for equity in health, 13(1), 103. https://doi.org/10.1186/s12939-014-0103-5 lecompte, v., miconi, d., & rousseau, c. (2018). challenges related to migration and child attachment: a pilot study with south asian immigrant mother–child dyads. attachment and human development, 20(2), 208-222. https://doi.org/10.1080/14616734.2017... levac, d., colquhoun, h., & o'brien, k. (2010). scoping studies: advancing the methodology. implementation science, 5(1). https://doi.org/10.1186/1748-5908-5-69 mcrae, d. n., muhajarine, n., janus, m., duku, e., brownell, m., forer, b., & guhn, m. (2020). immigrant and ethnic neighbourhood concentration and reduced child developmental vulnerability: a canadian cohort study. international journal of population... montazer, s., & wheaton, b. (2011). the impact of generation and country of origin on the mental health of children of immigrants. journal of health and social behaviour, 52(1), 23-42. https://doi.org/10.1177/0022146510395027 oxman-martinez, j., & choi, y. r. (2014). discrimination, relationships and ethnic identity as predictors of self-esteem and social competence among early adolescent immigrants in canada. in borders, j.h., handbook in the psychology of self-esteem. no... oxman‐martinez, j., rummens, a. j., moreau, j., choi, y. r., beiser, m., ogilvie, l., & armstrong, r. (2012). perceived ethnic discrimination and social exclusion: newcomer immigrant children in canada. american journal of orthopsychiatry, 82(3), 376.... salami, b., yaskina, m., hegadoren, k., diaz, e., meherali, s., rammohan, a., & ben-shlomo, y. (2017). migration and social determinants of mental health: results from the canadian health measures survey. canadian journal of public health, 108(4), 362... salami, b., salma, j., hegadoren, k., meherali, s., kolawole, t., & diaz, e. (2019). sense of community belonging among immigrants: perspective of immigrant service providers. public health, 167, 28-33. https://doi.org/10.1016/j.puhe.2018.10.017 statistics canada. (2020). immigration and ethnocultural diversity in canada. available online: https://www12.statcan.gc.ca/nhs-enm/2011/as-sa/99-010-x/99 010-x2011001-eng.cfm (accessed on 8 may 2020). statistics canada. (2020). immigration and ethnocultural diversity in canada. available online: https://www12.statcan.gc.ca/nhs-enm/2011/as-sa/99-010-x/99 010-x2011001-eng.cfm (accessed on 8 may 2020). statistics canada. (2017a). census in brief: children with an immigrant background: bridging cultures. available online: https://www12.statcan.gc.ca/census-recensement/2016/as-sa/98-200-x/2016015/98-200-x2016015-eng.cfm (accessed on 12 august 2020). statistics canada. (2017a). census in brief: children with an immigrant background: bridging cultures. available online: https://www12.statcan.gc.ca/census-recensement/2016/as-sa/98-200-x/2016015/98-200-x2016015-eng.cfm (accessed on 12 august 2020). statistics canada. (2017b). the daily-immigration and ethnocultural diversity: key results from the 2016 census. available online: https://www150.statcan.gc.ca/n1/daily-quotidien/171025/dq171025b-eng.htm (accessed on 2020). statistics canada. (2017b). the daily-immigration and ethnocultural diversity: key results from the 2016 census. available online: https://www150.statcan.gc.ca/n1/daily-quotidien/171025/dq171025b-eng.htm (accessed on 2020). the un refugee agency canada. (2021, march 16). refugee statistics. unhcr canada. https://www.unhcr.ca/in-canada/refugee-statistics/ tricco, a. c., lillie, e., zarin, w., o'brien, k. k., colquhoun, h., levac, d., ... & hempel, s. (2018). prisma extension for scoping reviews (prisma-scr): checklist and explanation. annals of internal medicine, 169(7), 467-473. https://doi.org/10.732... tulli, m., salami, b., begashaw, l., meherali, s., yohani, s., hegadoren, k. (2020). immigrant mothers' perspectives of barriers and facilitators in accessing mental health care for their children. journal of transcultural nursing, 31(6), 598-605, ht... united nations children's fund-unicef. (2019a). children on the move, key facts & figures. available online: https://data.unicef.org/resources/children-move-key-facts-figures/ (accessed on 24 february 2019). united nations children's fund-unicef. (2019b). child migration – unicef data. available online: https://data.unicef.org/topic/child-migration-and-displacement/migration/ (accessed on 14 april 2020). wilson, r. m., murtaza, r., & shakya, y. b. (2010). pre-migration and post-migration determinants of mental health for newly arrived refugees in toronto. canadian issue, 45. woodgate, r. l., busolo, d. s., crockett, m., dean, r. a., amaladas, m. r., & plourde, p. j. (2017). a qualitative study on african immigrant and refugee families’ experiences of accessing primary health care services in manitoba, canada: it’s not eas... elsayed, d., song, j. h., myatt, e., colasante, t., & malti, t. (2019). anger and sadness regulation in refugee children: the roles of pre-and post-migratory factors. child psychiatry & human development, 50(5), 846-855. https://doi.org/10.1007/s10578-019-00887-4 lecompte, v., miconi, d., & rousseau, c. (2018). challenges related to migration and child attachment: a pilot study with south asian immigrant mother–child dyads. attachment & human development, 20(2), 208-222. https://doi.org/10.1080/14616734.2017.1398765 burgos, m., al-adeimi, m., & brown, j. (2017). protective factors of family life for immigrant youth. child and adolescent social work journal, 1-11. https://doi.org/10.1007/s10560-016-0462-4 brabant, l. h., lapierre, s., damant, d., dube-quenum, m., lessard, g., & fournier, c. (2016). immigrant children: their experience of violence at school and community in host country. children & society, 30(3), 241-251. https://doi.org/10.1111/chso.12131 beiser, m., & hou, f. (2016). mental health effects of premigration trauma and postmigration discrimination on refugee youth in canada. journal of nervous & mental disease, 204(6), 464-470. http://doi.org/10.1097/nmd.0000000000000516 beiser, m., puente-duran, s., & hou, f. (2015). cultural distance and emotional problems among immigrant and refugee youth in canada: findings from the new canadian child and youth study (nccys). international journal of intercultural relations, 49, 33-45. https://doi.org/10.1016/j.ijintrel.2015.06.005 hilario, c. t., vo, d. x., johnson, j., & saewyc, e. (2014). acculturation, gender, and mental health of southeast asian immigrant youth in canada. journal of immigration and minority health, (6), 1121-1129. https://doi.org/10.1007/s10903-014-9978-x beiser, m., goodwill, a. m., albanese, p., mcshane, k., & nowakowski, m. (2014). predictors of immigrant children's mental health in canada: selection, settlement contingencies, culture, or all of the above? social psychiatry & psychiatric epidemiology, 49(5), 743-756. http://dx.doi.org/10.1007/s00127-013-0794-8 kwak, k., & rudmin, f. (2014). adolescent health and adaptation in canada: examination of gender and age aspects of the healthy immigrant effect.  international journal for equity in health, 13(1), 103. https://doi.org/10.1186/s12939-014-0103-5 beiser, m., taa, b., fenta-wube, h., baheretibeb, y., pain, c., & araya, m. (2012). a comparison of levels and predictors of emotional problems among preadolescent ethiopians in addis ababa, ethiopia, and toronto, canada. transcultural psychiatry, 49(5), 651-677. p oxman‐martinez, j., rummens, a. j., moreau, j., choi, y. r., beiser, m., ogilvie, l., & armstrong, r. (2012). perceived ethnic discrimination and social exclusion: newcomer immigrant children in canada. american journal of orthopsychiatry, 82(3), 376. https://doi.org/10.1111/j.1939-0025.2012.01161.x  awareness and sensitivity training to staff, educator, and teachers  use of multicultural teaching and learning material  facilitating dialogue between multicultural peers  organizing immigrant parents outreach programs and foster participation into school event  protected funding for second-language esl programming beiser, m., zilber, n., simich, l., youngmann, r., zohar, a. h., taa, b., & hou, f. (2011). regional effects on the mental health of immigrant children: results from the new canadian children and youth study (nccys). health & place, 17(3), 822-829. http://dx.doi.org/10.1016/j.healthplace.2011.03.005 hamilton, h. a., marshall, l., rummens, j. a., fenta, h., & simich, l. (2011). immigrant parents' perceptions of school environment and children's mental health and behavior. journal of school health, 81(6), 313-319. http://doi.org/10.1111/j.1746-1561.2011.00596.x montazer, s., & wheaton, b. (2011). the impact of generation and country of origin on the mental health of children of immigrants. journal of health & social behavior, 52(1), 23-42. http://dx.doi.org/10.1177/0022146510395027  the relationships between region of resettlement and children’s well-being  the relationships between parental absences and children’s mental health risk. berry, j. w., & sabatier, c. (2010). acculturation, discrimination, and adaptation among second generation immigrant youth in montreal and paris. international journal of intercultural relations, 34(3), 191-207. doi:10.1016/j.ijintrel.2009.11.007 costigan, c. l., koryzma, c. m., hua, j. m., & chance, l. j. (2010). ethnic identity, achievement, and psychological adjustment: examining risk and resilience among youth from immigrant chinese families in canada. cultural diversity & ethnic minority psychology, 16(2), 264-273. http://dx.doi.org/10.1037/a0017275 ihtp, 2(2), 223-239, 2022 cc by-nc-nd 4.0 issn 2563-9269 223 arabic-speaking older immigrants’ perceived acceptability of interventions for preventing elder abuse sepali guruge1, souraya sidani1, ernest leung1, souhail boutmira1 1daphne cockwell school of nursing, toronto metropolitan university, toronto, on, canada corresponding author: s. guruge (sguruge@ryerson.ca) abstract objective: although research has identified interventions to address risk factors for elder abuse, it is unclear which interventions are relevant to specific immigrant communities. this study examined how arabic-speaking immigrants in the greater toronto area perceived the acceptability of interventions for elder abuse and explored gender differences in these perceptions. methods: older women and men (n = 37) who self-identify as arabic-speaking immigrants residing in the greater toronto area rated the acceptability of 14 interventions. the literature describes these interventions as addressing the risk factors for elder abuse as reported at the levels of older adults, the family, their relationship, and the social environment. four items, adapted from a validated measure, were used to assess the interventions’ acceptability. the data were analyzed using descriptive statistics (objective 1) and independent sample t-test (objective 2). results: arabic-speaking older immigrants perceived five interventions to prevent elder abuse in their community as highly acceptable: case management, community outreach, advocacy, communityoutreach programs, and peer-support programs. gender differences were found for four interventions: two interventions (case management and community outreach) targeted older adults, one intervention (education) targeted the family, and one (advocacy) focused on the social environment. conclusion: findings can inform service providers, managers, and policymakers about which interventions must be prioritized to address elder abuse in the arabic-speaking immigrant community. keywords acceptability; arabic; elder abuse; interventions; older immigrants funding source this work was funded by the ministry of senior affairs, ontario government introduction with the increase in the population of older adults, the world health organization (who) has recognized elder abuse as a public health and societal concern worldwide (who, 2020). from an ecological perspective, factors that create vulnerabilities for elder abuse are associated with the victims, the abusers, the relationships between them, and the social environment. the individual changes often experienced with aging, such as cognitive impairment, poor physical health or frailty, mental health problems, and low-income result in the older adults’ physical, emotional, social, and financial dependence on others. the abusers are often family members (spouse, children, or grandchildren) providing assistance to older adults. caregiving workload and perceived burden, and other life stresses as well as abusers’ mental health and substance use contribute to abuse. relationships between older adults and their family members that are characterized by weak affective bonds or ihtp, 2(2), 223-239, 2022 cc by-nc-nd 4.0 issn 2563-9269 224 disharmony can generate conflicts and subsequent abuse. social environments where older adults and family members have no or limited social and instrumental support increase the risk of elder abuse (burnes et al., 2021; day et al., 2017; de sousa et al., 2021). different publicor community-health interventions have been developed to address specific risk factors and, thereby, to prevent elder abuse and promote older adults’ health and wellbeing. these interventions can be categorized into those targeting risk factors that are related to the older adults, and those focusing on factors related to the family, the relationships between older adults and their family members, and the social environment. the first category of interventions includes: (1) education aimed to inform older adults about abuse and strategies to prevent or manage it; (2) rehabilitation programs aimed to enhance older adults’ physical functioning; (3) psycho-social interventions aimed at teaching older adults assertive behaviours, communication skills that strengthen their relationships with family members or caregivers, problem-solving strategies, and empowerment skills; and (4) multidisciplinary services that entail screening and provision of counselling or legal assistance. interventions targeting family members involve psychotherapy to manage mental health or substance-use problems, referral to community or social services to improve access to instrumental support, and home visits to monitor occurrence of abuse through surveillance. mediation led by community workers to facilitate conflict resolution is an example of interventions focus on the relationships between older adults and their family (baker et al., 2016; day et al., 2017; de sousa et al., 2021; fearing et al., 2017; marshall et al., 2020; storey et al., 2022). public health awareness campaigns (dong et al., 2014) are examples of interventions targeting risk factors in the social environment. recent reviews of studies that evaluated the effectiveness of interventions for preventing elder abuse have reached different conclusions. burnes and colleagues (2021) included 52 studies in their systematic review, and de sousa and colleagues (2021) selected seven studies for their mixed-method systematic review. both research teams reported that, in general, the interventions had positive outcomes represented in a reduction of abuse occurrence. by contrast, after conducting a review of 12 systematic reviews, marshall and colleagues (2020) concluded that evidence on intervention effectiveness was insufficient and mixed. such conflicting views provide limited guidance for selecting, implementing, and evaluating interventions aimed at preventing elder abuse and promoting health and well-being in community-dwelling older adults including older immigrants. in the case of limited guidance, and consistent with principles of person engagement in the design of interventions or healthcare, it is important to examine older people’s perceptions of interventions; such perceptions have been found to affect their health-seeking behaviours, engagement, and enactment of interventions, as well as the interventions’ effectiveness. (sidani & fox, 2020; sidani & braden, 2021). informed by an academic-community collaborative approach to research, this study involved older immigrant women and men in identifying interventions for preventing elder abuse that are acceptable to the arabicspeaking community in canada. in canada, the arabic-speaking population is growing fast: it has increased by about 30% since the 2011 census, with the largest proportion settling in ontario (statistics canada, 2017). arabic-speaking immigrants come to canada from a range of countries, but most commonly from algeria, egypt, iraq, jordan, lebanon, libya, mauritania, morocco, palestine, sudan, syria, tunisia, and yemen. older immigrants from these countries experience common socio-cultural and political challenges before (e.g., war) and after (e.g., discrimination) migration, as well as share common beliefs and values that increase their vulnerability for elder abuse, and affect their help-seeking behaviour, and shape their perceptions of interventions for preventing elder abuse (dominguez et al., 2019; mydin & othman, 2020). within the arabic-speaking community, family members are expected to be loyal (usta et al., 2021) and support each other (gierveld et al., 2015). multigenerational households are viewed favourably, providing a venue for older adults to assist their children in various life responsibilities such as raising grandchildren, and for children and grandchildren to look after older adults. religious doctrines and cultural values emphasize the importance of treating older adults with affection and respect (usta et al., ihtp, 2(2), 223-239, 2022 cc by-nc-nd 4.0 issn 2563-9269 225 2021). cultural and religious beliefs can also influence older adults’ perception of interventions to prevent elder abuse. older adults’ strong sense of obligation to support their family often results in the need to uphold the “good name of the family” and in selfblame about their parenting style. therefore, older adults may not accept certain interventions to prevent abuse (mydin & othman, 2020), such as those targeting family members. research has reported gender differences in the experience of elder abuse and in the perception of interventions. older women are more likely to be abused (herron & rosenberg, 2016), and to experience emotional and physical abuse (amstadter et al., 2011). women and men differ in how they cope with stress, and consequently in their perceptions of acceptable interventions. because women are more likely to talk to others to cope with stress (for example, associated with abuse), they view psychological, emotion-focused interventions as appealing. men, in general, tend to seek quick solutions for their stress, and consider pharmacotherapy or solution-focused interventions (e.g., coaching or occupational support) as acceptable (liddon et al., 2018; rodenburg-vandenbussche et al., 2018; sonik et al., 2020). the extent to which arabic-speaking older immigrant women and men differ in their perceived acceptability of interventions for preventing elder abuse has not been examined. study objectives the objectives of this study were to: (1) examine arabic-speaking older immigrants’ perceived acceptability of interventions for preventing elder abuse, and (2) explore gender differences in the perceived acceptability of interventions. acceptability refers to the desirability of interventions to older adults and reflects favourable attitudes toward interventions. the formulation of these attitudes is based on older adults’ understanding of the interventions and appraisal of their attributes (sidani & fox, 2020). the attributes include the intervention’s appropriateness (i.e., how suitable is the intervention to the individual and/or the community), effectiveness (i.e., how helpful is the intervention in preventing abuse and promoting health and wellbeing), and risk (i.e., how severe are the risks or discomfort associated with the intervention) (lengel & mullin-sweat, 2017; sidani et al., 2018). making interventions that are perceived as acceptable and therefore in alignment with older immigrant women and men’s preferences can enhance their uptake (hawkins et al., 2017), reduce wasted treatment/intervention efforts and costs (sidani & braden, 2021), and address health disparities (sonik et al., 2020). methods study design this paper presents the results of the second phase of a mixed-method project that aimed to identify risk factors for elder abuse and to examine culturally relevant interventions for elder abuse in the arabicspeaking community. the project’s protocol has been published (guruge et al., 2019). this paper focuses on examining the arabic-speaking older immigrants’ perceived acceptability of interventions to address elder abuse. data were collected with validated items that were translated into arabic. setting and sample the study was conducted in the greater toronto area (gta). more than half of the arabic-speaking immigrants (close to 500,000) who live in canada settle in ontario, with the largest proportion residing in the gta (statistics canada, 2017). complementary strategies were used to recruit older immigrants. all recruitment documents were translated into arabic. flyers were posted in community settings frequented by arabic-speaking immigrants, such as food stores, religious centres, and community recreational centres. staff at partnering community agencies informed attendees at community events about the study. in addition, participants were asked to share information about the study within their social networks. to be eligible to participate in the study, people had to be 60 years of age and older; reside in the gta; self-identify as arabic-speaking immigrant; and have personal experience of elder abuse or know others in the arabic-speaking immigrant community who had experienced it. a total of 37 older immigrants participated in the study. the sample consisted of 19 women and 18 ihtp, 2(2), 223-239, 2022 cc by-nc-nd 4.0 issn 2563-9269 226 men. the sample size was adequate (cohen, 1992) to examine the interventions’ acceptability in the total sample (objective 1) and to detect moderate-to-large gender differences in perceived acceptability (objective 2). interventions to prevent elder abuse the selection of interventions to prevent elder abuse was guided by relevant scientific evidence (i.e., results of systematic reviews; burnes et al., 2021; de souza et al., 2021), grey literature (i.e., unpublished reports on the implementation and evaluation of programs; obtained from our partnering community agencies), and feedback by community leaders and service providers at partnering community agencies offering services to arabic-speaking immigrants. service providers and community leaders were instrumental in identifying additional interventions, and in reviewing the interventions’ descriptions for clarity. additional interventions represented those used in current practice and those proposed by arabic-speaking older immigrants to service providers and community leaders. a total of 14 interventions were selected. these were categorized as interventions that addressed risk factors for elder abuse experienced at the levels of the older adults, the family, the relationship between older adults and family, and the social environment. six interventions that focused on risk factors experienced by older adults included: psychoeducation, training english-as-a-secondlanguage (esl) teachers to tailor classes to older immigrants’ needs, access to information about outreach programs available in the community, peersupport programs, case management, and community-outreach programs. three interventions targeting the family consisted of education, psychosocial counselling and/or support, and a multicomponent intervention. two interventions focused on the relationship between older adults and family, cultural context support, and family mediation, whereas three interventions―social support for older adults, advocacy, and community outreach―targeted the social environment. we generated descriptions of the interventions to help older immigrants understand what the interventions are about―this understanding is essential to enable older immigrants to appraise the acceptability of the interventions (sidani & fox, 2020). service providers and community leaders reviewed the descriptions for accuracy and clarity. the descriptions explained the goals (i.e., what the intervention aimed to achieve) and the components or activities comprising the interventions (what the interventions involve), using simple terms as illustrated in table 1. variables and measures participants’ socio-demographic characteristics standard questions, developed by statistics canada, were used to gather information on participants’ age, gender, marital status, number of children, level of education, length of time in canada, and english-language proficiency. acceptability of interventions items were adapted from the treatment perception and preferences (tpp) scale (sidani et al., 2018) to measure the acceptability of the 14 interventions for preventing elder abuse. as per the scale developers’ suggestion, the adaptation involved the generation of descriptions for the interventions under consideration, and the specification of the outcomes of interest (i.e., prevention of abuse and promotion of health and well-being) in the items. in this study, we selected four items of the tpp scale based on service providers’ and community leaders’ input. the items reflected the treatment attributes that were relevant and easy to understand by arabicspeaking older immigrants. we selected items in a way that maintained content validity and enhanced face validity—that is, comprehension and clarity of items’ content—while reducing response fatigue. the items operationalized the following interventions’ attributes: effectiveness in reducing elder abuse in the community, effectiveness in improving well-being of older adults who experience abuse in the community, appropriateness for older adults who experience elder abuse in the community, and severity of risk (i.e., extent to which older adults exposed to the intervention may feel worse or experience more abuse). a five-point response scale was used in the rating, ranging from not at all (0) to very much (4). a total scale score was computed as the mean of the items’ scores to quantify the level of ihtp, 2(2), 223-239, 2022 cc by-nc-nd 4.0 issn 2563-9269 227 perceived of each intervention. total scores greater than 2, which is the midpoint of the rating scale, indicated acceptability (sidani et al., 2018). in this study, the four items demonstrated internal consistency reliability, evidenced by cronbach’s alpha coefficients of 0.55 to 0.87 across the 14 interventions. the cronbach’s alpha coefficient was less than 0.70 for items for rating only two interventions (esl teacher training and information about outreach programs), which is attributable to the very low variance on the item assessing severity of risk; most participants rated these two interventions as associated with no-to-very-low risk. the items for rating the remaining interventions demonstrated good reliability evidenced by alpha coefficients greater than 0.70, as also reported by sidani and colleagues (2018). data collection consenting participants attended group sessions, which were held at locations of convenience to participants. the sessions involved women only, men only, or a mix, based on participants’ comfort. bilingual research assistants (ras) facilitated the sessions. they explained the planned research activities; distributed the questionnaire which included, for each intervention, a description of its goals and components or activities (table 1), followed by the items to rate its acceptability; read aloud the description of an intervention and asked participants to follow through by reading it in the questionnaire; clarified aspects of the intervention as needed; requested that participants complete the acceptability rating items individually; and provided assistance as needed. the ras repeated the same procedure for all 14 interventions and offered short breaks to minimize response fatigue. the questionnaire was translated into arabic by bilingual ras, and health, social, and settlement service providers working with the arabic-speaking community, and arabic-speaking community leaders; they also reviewed the translated version for accuracy and appropriateness of wording. data analysis to analyze the socio-demographic data we used descriptive statistics. this included frequency (and percentage) distribution for categorical variables, and measures of central tendency (mean) and dispersion (standard deviations) for continuous variables. to address objective 1, participants’ ratings of the interventions’ overall acceptability (i.e., total scale score) were analyzed descriptively (i.e., mean and standard deviation). to examine gender differences in perceived acceptability of the interventions (objective 2), independent sample t-test was used. cohen’s d was computed to quantify the size of the differences, with values less than 0.40 indicating small, 0.41 to 0.65 moderate, and more than 0.65 as large differences (cohen 1992). ethics consideration the project protocol was approved by the research ethics board at toronto metropolitan university (formerly ryerson university) (reb #: 2017048). eligible older immigrants were asked to meet the bilingual ras before the group session started. the ras explained the study’s objectives, activities, benefits, and risks; clarified the voluntary nature of participation and participants’ rights; answered any questions that attendees had; and obtained their written or oral consent (based on individual preference). results participants’ sociodemographic profile the sample (n = 37) consisted of 19 (51.3%) women and 18 (48.7%) men, with a mean age of 67.65 (+ 8.35; range = 54 to 93) years. about two thirds (67.7%) were married; the remaining participants were widowed (25.8%), single (3.2%), or divorced (3.2%). the majority (90.3%) had children (range = 1 to 8; mode = 3) who live in canada. the participants’ highest level of education varied: 33.3% did not complete high school; 13.3% completed high school; 13.3% had a college diploma, whereas 40.1% had a university degree (bachelor’s, master’s, or phd). the majority (80.6%) of participants have been in canada for less than or equal to 21 years (i.e., arrived in canada in 2000 or after), and 19.4% have been in canada for more than 21 years (i.e., arrived in canada before 2000). almost all participants spoke arabic at home and 67.8% reported good-to-excellent proficiency in the english language. ihtp, 2(2), 223-239, 2022 cc by-nc-nd 4.0 issn 2563-9269 228 participants perceived acceptability of interventions table 2 presents the mean acceptability scores for the six interventions targeting risk factors experienced by older immigrants. the mean scores are greater than 2 (midpoint of the rating scale), indicating that older immigrants, on average, considered all these interventions as acceptable within the arabic-speaking community. they perceived the interventions as appropriate, effective in reducing abuse, and associated with minimal risk. however, they rated case management, communityoutreach programs, peer-support programs, esl teacher training, and information about outreach programs (mean scores > 3) higher than psychoeducation. the mean acceptability scores for the three interventions targeting the family appear in table 3. although arabic-speaking older immigrants viewed all these interventions as acceptable, the mean scores hovered around the midpoint of the rating scale (i.e., 2). the multi-component intervention was perceived less favourably than education, and referral to counselling and/or support. the mean acceptability scores for the two interventions focusing on the relationship between older adults and family are in table 4. both interventions were perceived as acceptable, with cultural context support rated slightly higher than family mediation. table 5 presents the mean acceptability scores for the three interventions addressing the social environment. community outreach and advocacy (mean score > 3) were rated slightly higher than social support for older adults. gender differences in perceived acceptability of interventions the mean scores for older women’s and older men’s perceived acceptability of the four categories of interventions are presented in tables 2 to 5. statistically significant differences were found for four interventions. of these, two interventions targeted older adults (i.e., case management and community outreach), one targeted the family (i.e., education), and one focused on the social environment (i.e., advocacy). the between-group differences were large (effect sizes > .65); women had larger mean scores than men. although not statistically significant (p-level > .05), there were moderately sized (effect size range: .58 to .62) gender differences in the perceived acceptability of the following interventions: information about outreach programs (targeting older adults), cultural context support (targeting the relationship), and multi-component intervention (targeting the family). older women’s mean scores were higher than older men’s mean scores. gender differences in the acceptability of the remaining interventions were not statistically significant and were of a small size (effect sizes < .40). discussion informed by an academic-community collaborative approach, this study engaged older immigrants in the identification of interventions for preventing elder abuse that are acceptable to the arabic-speaking community, with the goal of making these interventions available in public or community health, social, and settlement service settings. offering interventions that are desirable to arabic-speaking older immigrants is the hallmark of person-centred and culturally relevant and safe care, which is expected to reduce health disparities (sonik et al., 2020). making available and accessible interventions that older immigrants view favourably improves their help-seeking behaviours. that is, they will seek, initiate, and actively participate in or implement the interventions. older immigrants exposed to and engaged in interventions that align with their beliefs and values, and that are responsive to their preferences, are likely to be satisfied. satisfaction enhances perseverance in the use of interventions or the performance of health-related behaviours, which in turn, promotes health and well-being (sidani & fox 2020). in general, older immigrants rated all 14 interventions as acceptable within the arabicspeaking community for preventing elder abuse. this general finding may suggest that arabic-speaking older immigrants perceived a pressing need for ways to address elder abuse in their community. as well, older immigrants may not be familiar with interventions for elder abuse and viewed the ihtp, 2(2), 223-239, 2022 cc by-nc-nd 4.0 issn 2563-9269 229 interventions under consideration as potentially acceptable in meeting this need. an interesting trend was observed in arabicspeaking older immigrants’ appraisal of the interventions. overall, the mean acceptability scores for interventions focusing on the family (abuser) and on the relationship between older adults and family were lower than the mean scores for interventions targeting older adults and the social environment. this finding differs slightly from begley and colleagues’ (2012) results. in their qualitative study conducted in ireland, older adults proposed two strategies targeting the family and the relationship to decrease the risk of elder abuse: providing support for family caregivers to reduce tension within the family and the feeling of isolation among family caregivers; and creating awareness through education. the trend seen in our study may be related to strong cultural and/or religious beliefs, and the commitment of arabic-speaking older immigrants to support their family, which perhaps generates a sense of self-blame about parenting style and the desire to maintain good family ties (mydin & othman, 2020). it is also plausible that arabic-speaking older immigrants may be more comfortable seeking help regarding elder abuse from health, social, and settlement workers instead of the police for two main reasons. first, arabic-speaking communities generally come from countries with authoritarian regimes where policing priority is not to serve and protect, but to enforce the dictator’s rules (gause 2011). second, there are incidences where older immigrants get separated from their children because of authorities’ interventions. arabic-speaking older immigrants may therefore prefer to keep their concerns within the private sphere, and abstain from reporting elder abuse to authorities for fear of such separation. instead, older immigrants expressed a desire for interventions that enable them to engage with service providers and with the local community, and to actively participate in community events where they can cultivate multigenerational relationships. further qualitative research is required to explore if and how these beliefs and behaviours could have shaped arabic-speaking older immigrants’ perception of interventions targeting the family and the relationship, as well as aspects of these interventions they viewed unfavourably. most interventions focusing on older immigrants, and on the social environment were considered as very acceptable, evident by mean scores of 3.0 or more. the five highly valued interventions were: case management (mean score of 3.30), community outreach (3.27), advocacy (3.26), communityoutreach programs (3.23), and peer-support programs (3.13). these interventions that are highly valued by arabic-speaking older immigrants are, to some extent, comparable to those proposed by older adults in ireland to prevent elder abuse. the latter interventions consisted of healthcare professionals’ involvement in assessing elder abuse and providing or referring them to appropriate services, staying connected with the community and friends through participation in social clubs or home visits by the church community, and providing information or education and informal support to older adults (begley et al., 2012). excluding advocacy, the interventions perceived as highly acceptable to older adults involve the delivery of health, social, and settlement services and related information (e.g., medical and paramedical emergency phone numbers in arabic) aimed at maintaining their physical functioning or health and thereby, their independence. this independence, in turn, can promote their ability to stay connected with their social network and community, thereby enhancing, or ensuring receipt of much-needed instrumental, emotional, and social support, and reducing their sense of isolation. the gender differences reported in this study reflected the differences in the perceived level of the interventions’ acceptability, more than the differences in the category or type of interventions. in other words, while both older women and men viewed the interventions as acceptable, the women’s mean rating scores were, in general, higher than the men’s mean rating scores. although there is no specific explanation for this finding, it is plausible that arabic-speaking older immigrant women, who are more likely than men to experience or see other women experience abuse (herron & rosenberg, 2016), need assistance and support, and as such expressed high endorsement of the interventions under consideration. for instance, older immigrant women who participated in this study indicated to the ras that they would like to address their concerns in a larger setting where both men and women from the ihtp, 2(2), 223-239, 2022 cc by-nc-nd 4.0 issn 2563-9269 230 arabic community are present. however, they often mentioned that men did not take their opinion seriously. limitations the sample included well-educated women and men, with a good level of english proficiency. therefore, their perceived acceptability of elder abuse interventions may not be representative of arabicspeaking older immigrants with a different sociodemographic profile, including those unable to speak english or to use public transportation to attend data collection sessions. participants were also asked to rate a large number of interventions (n = 14). although the ras who facilitated the data collection sessions followed the pace that participants were comfortable with in reading the interventions’ descriptions and responding to the acceptability items (and ensuring that participants had a break), there is a potential for response fatigue. such fatigue could have contributed to comparable ratings for all interventions. further, the order for presenting the interventions was not randomized, which, in combination with response fatigue, could have affected the ratings of the interventions presented last. conclusion arabic-speaking older immigrants perceived five interventions to prevent elder abuse in their community as highly acceptable. the interventions were: case management, community outreach, advocacy, community-outreach programs, and peersupport programs. consistent with the principles and process of the academic-community collaborative approach, the next step involves the engagement of older immigrants, health, social, and settlement service providers and their managers, as well as researchers in the co-development of the interventions’ protocol and the co-production of related intervention materials (hawkins et al., 2017). references amstadter, a. b., cisler, j. m., mccauley, j. l., hernandez, m. a., muzzy, w., acierno, r. (2011). do incident and perpetrator characteristics of elder mistreatment differ by gender of the victim? results from the national elder mistreatment study. journal of elder abuse & neglect, 23, 43-57. baker, p.r.a., francis, d.p., hairi, n., othman, s., & choo, w.y. (2016). interventions for preventing abuse in the elderly. cochrane database of systematic reviews. https://doi.org/10.1002%2f14651858.cd010 321.pub2 begley, e., o’brien, m., anand, j.c., killick, c., & taylor, b. (2012). older people’s views of support services in response to elder abuse in communities across ireland. quality in ageing, 13(1), 48-59. burnes, d., macneil, a., nowaczynski, a., sheppard, c., trevors, l., lenton, e., lachs, m., & pillemer, k. (2021). a scoping review of outcomes in elder abuse intervention research: the current landscape and where to go next. aggression & violent behavior, 57(2), 101476. cohen, j. (1992). a power primer. psychological bulletin, 112(1), 155-159. day, a., boni, n., evert, h. & knight, t. (2017). an assessment of interventions that target risk factors for elder abuse. health & social care in the community, 25(5), 1532-1541. de sousa, r.c.r., araúja-monteiro, c.k.n., souto, r.q., santos, r.c., leal, c.q.a.m., & nascimento, n.m. (2021). interventions to prevent elder abuse in the community: a mixed-methods systematic review. revista da escola de enfermagen da usp, 55, 1-11. dominguez, s.f., storey, j.e., & glorney, e. (2019). help-seeking behavior in victims of elder abuse: a systematic review. trauma, violence and abuse, 22(3), 466-480. dong, x., chang, e-s., wong, e., & simon, m.a. (2014). perceived barriers and facilitators to implement elder abuse intervention for victims and perpetrators: views from us chinese older adults. the journal of adult protection, 16(5), 307-321. fearing, g., sheppard, c.l., mcdonald, l., beaulieu, m., & hitzig, s.l. (2017). a systematic review on community-based interventions for elder abuse and neglect. journal of elder abuse & neglect, 29(2/3), 102-133. gause iii, f. g. (2011). why middle east studies missed the arab spring: the myth of authoritarian stability. foreign affairs, 81-90. https://web-s-ebscohost-com.ezproxy.lib.ryerson.ca/ehost/viewarticle/render?data=dgjymppp44rp2%2fdv0%2bnjisfk5ie46pd98onthqzj34hspooa7enywlkltkewprbknqe4slcwskiexss%2b8ujfhvhx4yzn5eyb4rovtlcutk60r69kponnflvxs0qzp7vmsao1fokpq0yup%2brf36uzfquvtvdhp7zp4k3fea628h3i3%2fe%2b6tfsf7vb7d7i2lt74eokjn%2fdu1nmnn%2bgu6ewtlsoskm0qqr%2b7ejrefkz5i3q4vj99uoa&vid=15&sid=a5251743-7dd3-401f-a55f-978c187b7aa0@redis https://web-s-ebscohost-com.ezproxy.lib.ryerson.ca/ehost/viewarticle/render?data=dgjymppp44rp2%2fdv0%2bnjisfk5ie46pd98onthqzj34hspooa7enywlkltkewprbknqe4slcwskiexss%2b8ujfhvhx4yzn5eyb4rovtlcutk60r69kponnflvxs0qzp7vmsao1fokpq0yup%2brf36uzfquvtvdhp7zp4k3fea628h3i3%2fe%2b6tfsf7vb7d7i2lt74eokjn%2fdu1nmnn%2bgu6ewtlsoskm0qqr%2b7ejrefkz5i3q4vj99uoa&vid=15&sid=a5251743-7dd3-401f-a55f-978c187b7aa0@redis https://web-s-ebscohost-com.ezproxy.lib.ryerson.ca/ehost/viewarticle/render?data=dgjymppp44rp2%2fdv0%2bnjisfk5ie46pd98onthqzj34hspooa7enywlkltkewprbknqe4slcwskiexss%2b8ujfhvhx4yzn5eyb4rovtlcutk60r69kponnflvxs0qzp7vmsao1fokpq0yup%2brf36uzfquvtvdhp7zp4k3fea628h3i3%2fe%2b6tfsf7vb7d7i2lt74eokjn%2fdu1nmnn%2bgu6ewtlsoskm0qqr%2b7ejrefkz5i3q4vj99uoa&vid=15&sid=a5251743-7dd3-401f-a55f-978c187b7aa0@redis ihtp, 2(2), 223-239, 2022 cc by-nc-nd 4.0 issn 2563-9269 231 gierveld, j.d.j., van der pas, s., & keating, n. (2015). loneliness of older immigrant groups in canada: effects of ethnic-cultural background. journal of cross-cultural gerontology, 30(3), 251-268. guruge, s., sidani, s., matsuoka, a., man, g, & pirner, d. (2019). developing a comprehensive understanding of elder abuse prevention in immigrant communities: a comparative mixed methods study protocol. bmj open, 9, e022736. http://doi.org/10.1136/bmjopen2018-022736 hawkins, j., madden, k., fletcher, a., midgley, l., grant, a., cox, g., moore, l., campbell, r., murphy, s., bonell, c., & white, j. (2017) development of a framework for the coproduction and prototyping of public health interventions. bmc public health, 17, 689-699. http://doi.org/ 10.1186/s12889-017-4695-8 herron, r. v, & rosenberg, m. w. (2016). aging, gender, and “triple jeopardy” through the life course. in m. d. giesbrecht & v. a. crooks (eds.) place, health, and diversity: learning from the canadian experience (pp. 200-219). new york: routledge. lengel, g. j., & mullins-sweatt, s. n. (2017). the importance and acceptability of general and maladaptive personality trait computerized assessment feedback. psychol assess, 29(1), 112. https://doi.org/10.1037/pas0000321 liddon, l., kingerlee, r., & barry, j.a. (2018). gender differences in preferences for psychological treatment, coping strategies, and triggers to help‐seeking. british journal of clinical psychology, 57, 42-58. marshall, k., herbst, j., girod, c., & annor, f. (2020). do interventions to prevent or stop abuse and neglect among older adult’s work? a systematic review of reviews. journal of elder abuse & nelgect, 32(5), 409-433. mydin, m.h.f. & othman, s. (2020). elder abuse and neglect intervention in the clinical setting: perceptions and barriers faced by primary care physicians in malaysia. journal of interpersonal violence, 35(23-24), 6041-6066. rodenburg-vandenbussche, s., carlier, i.v.e., van vliet, i.m., van hemert, a.m., stiggelbout, a.m., & zitman, f.g. (2018). clinical and sociodemographic associations with treatment selection in major depression. general hospital psychiatry, 54, 18-24. sidani, s., & braden, c. j. (2021). nursing and health interventions: design, evaluation, and implementation (2nd ed.). oxford: john wiley & sons ltd. sidani, s. & fox, m. (2020). the role of treatment perceptions in intervention evaluation: a review. science of nursing and health practices, 3(2), 1-5. https://doi.org/10.31770/2561-7516.1079 sidani, s., epstein, d.r., miranda, j., fox, m. (2018). psychometric properties of the treatment perception and preferences scale. clinical nursing research, 27(6), 743-761. http://doi.org/10.1177/1054773816654137 sonik, r.a., creedon, t.b., progovac, a.m., carson, n., delman, j., delman, d., & lê cook, b. (2020). depression treatment preferences by race/ethnicity and gender and associations between past healthcare discrimination experiences and present preferences in a nationally representative sample. social science & medicine, 253, 112939. statistics canada. (2017). linguistic diversity and multilingualism in canadian homes, catalogue no. 98-200-x. retrieved april 2 2022, from: https://www12.statcan.gc.ca/censusrecensement/2016/as-sa/98-200x/2016010/98-200-x2016010eng.cfm#moreinfo storey, j.e., hart, s., & perka, m.r. (2022). identifying interventions and their efficacy as used by a community agency managing and responding to elder abuse. journal of applied gerontology, 41(1), 103-112. usta, j., el jarrah, r., kronfol, n., & farver, j.m. (2021). perspectives of elder abuse in lebanon. journal of elder abuse & neglect, 33(1), 65-81. world health organization. (2020). elder abuse. retrieved april 4, 2021, from https://www.who.int/news-room/factsheets/detail/elder-abuse https://doi.org/10.1037/pas0000321 ihtp, 2(2), 223-239, 2022 cc by-nc-nd 4.0 issn 2563-9269 232 table 1. interventions for preventing elder abuse category / target intervention goal(s) components or activities older adult psycho-education 1. increase older adults’ awareness of factors leading to abuse 2. improve their ability to solve problems that may lead to abuse, and 3. empower them to report their experience of abuse two types of sessions: conversational: cover topics related to the process and changes in functions with aging; strategies to maintain healthy aging; factors potentially leading to and consequences of abuse; strategies (e.g., problem solving) and community resources (e.g., home care) hands-on: discussion and demonstration of specific skills (e.g., problem solving) related to addressing factors leading to abuse esl teacher training to help the teachers revise esl sessions to align with older adults’ needs for learning english and talking with others training will cover: needs expressed by older adults for learning english (e.g., learn english in an informal setting with a focus on words / expressions related to daily life operations and functions). teachers revise the structure and format of esl sessions and operationalize the ideas into action protocols. information about outreach programs to inform older adults about existing outreach programs • compile a list of services or outreach programs that focus on meeting older adults’ physical, emotional, social, financial, and legal needs • translate the list and brief description of the services or outreach programs into arabic peer-support programs to promote peer support among older adults older adults and representatives from community centres focusing on arabicspeaking people collaborate in an effort to form the older adult peer-support program and train older adult volunteers in their role responsibilities, which include: identifying and visiting older adults with limited physical functioning to check on their condition, discussing their needs or services, and socializing with them case management to identify older adults who experience abuse and provide the required services case management integrates health, social, and legal services, including: 1. referral to community-based integrated services ihtp, 2(2), 223-239, 2022 cc by-nc-nd 4.0 issn 2563-9269 233 2. comprehensive assessment of older adult’s physical, mental, cognitive, social, living condition; factors that put the older adult at risk for abuse or older adult’s concerns 3. engagement of older adults in the development of care plans 4. provision of needed health and other services community-outreach programs to assist older adults with their activities of daily living and with accessing required services 1. having arabic-speaking outreach workers available to facilitate older adults’ access to services, and to communicate with service providers; 2. training volunteers or outreach workers to assist older adults who have a low income, who live alone, who have a disability or are in poor health and who are without social support in navigating and using public transportation, shopping, or other life activities family education 1. to increase awareness of physical and emotional changes that take place with age, factors leading to abuse, and strategies to addresses these changes; and 2. to improve problem-solving skills educational sessions covers: 1. topics related to aging; changes in physical and psycho-social / emotional functioning; health condition or illness of older adult and its consequences on physical, mental, social functions; factors potentially leading to abuse; strategies (e.g., problem solving) and community resources (e.g., respite care); 2. discussion and demonstration of strategies for dealing with older adults’ changes in physical, emotional, and social functions, and of skills for recognizing and preventing intergenerational conflict and power relations, and for collaborating with the older adult in problem solving referral to psychosocial counselling and/or support to assist family members in addressing problems and care for older adults who experience physical, mental, or cognitive impairment family members self-identify problem and seek professional (healthcare providers or social workers) or community leaders’ assistance who facilitate referral for needed services (e.g., psychotherapy, family therapy, emotional control or stress / anger management, respite care, and engagement in pleasant activities (for either the older adult or the family ihtp, 2(2), 223-239, 2022 cc by-nc-nd 4.0 issn 2563-9269 234 members), medication management support services (mmss) program multi-component intervention to raise awareness about elder abuse within the community part 1 focuses on public education. community leaders and/or organizations openly discuss elder abuse at regular events, and/or police officers organize education panels in schools and community centres, to inform community of legal consequences of abuse. part 2 consists of home visits by social workers to: assess the presence of abuse; discuss the problem with the older adults, and their family; collaborate with the older adults and their family in developing a plan to prevent abuse and to promote the wellbeing of all family members; and refer older adult and family to agreed-upon health, social, financial, and/or legal services. relationship cultural context support 1) to clarify cultural beliefs, values, and expectations related to how older adults should be treated, and 2) to explore ways to manage intergenerational conflict schools organize an event that is attended by family members (of all generations) to discuss the older adults’ status within the arab community (based on cultural beliefs, values, and expectations), intergenerational conflict, and ways to manage the conflict. family mediation to assist older adults and family member resolve concerns they may have within their family part 1: bilingual school teachers serve as mediators among family members (children, grandchildren, and grandparents) experiencing conflict related to language issues part 2: older adults, family members, and supportive community member (e.g., spiritual leader) attend a meeting during which the community member facilitates the discussion about concerns or problems faced by the older adults and their family members, and the development and execution of a plan of action agreeable to all parties social environment social support for older adults 1. to make a neighbourhood safe for older adults to engage in physical and social activities and 2. to provide opportunities for older adults to socialize and support each other meetings to involve neighborhood / community representatives and older adults in identifying and finding solutions to concerns about safety and to inform / train older adults in navigating community spaces community representatives and older adults work together to find a space that ihtp, 2(2), 223-239, 2022 cc by-nc-nd 4.0 issn 2563-9269 235 can be safely used by older adults to socialize and to organize informal gettogether events and engage in leisure activities advocacy to increase the community’s awareness of abuse part 1 focuses on the development of community committee to organize events aimed to: 1) have older adults relay their concerns and fears; 2) increase the community awareness of elder abuse; and 3) develop and implement strategies to prevent elder abuse in the community. part 2 involves the development of a partnership between public and private sectors to finance and/or facilitate transportation services for seniors. part 3 is concerned with forming a group of older adults and community representatives to visit leaders / politicians to increase their awareness of elder abuse and its consequences and to advocate for funding for services that prevent abuse. community-outreach 1. to reduce the sense of social isolation among older women and men, and 2. to enhance social interaction and/or intergenerational appreciation involvement of the community (schools, faith organizations, centres, businesses, social services) in preparing gift bags and organizing a day event for youth (e.g., students) to deliver the bags to older people’s homes ihtp, 2(2), 223-239, 2022 cc by-nc-nd 4.0 issn 2563-9269 236 table 2. mean (sd) acceptability scores for interventions targeting older immigrants intervention total sample women men t-test (p-level) effect size psycho-education 2.93 (0.64) 3.00 (0.73) 2.87 (0.55) 0.58 (.56) 0.19 esl teacher training 3.08 (0.58) 3.17 (0.66) 2.98 (0.48) 0.96 (.34) 0.31 information about outreach programs 3.07 (0.58) 3.23 (0.68) 2.90 (0.41) 1.78 (.08) 0.58 peer-support programs 3.13 (0.72) 3.22 (0.87) 3.04 (0.52) 0.77 (.44) 0.25 case management 3.30 (0.59) 3.48 (0.58) 3.11 (0.55) 1.99 (.05) 0.65 community-outreach programs 3.22 (0.64) 3.44 (0.62) 2.97 (0.59) 2.33 (.02) 0.78 ihtp, 2(2), 223-239, 2022 cc by-nc-nd 4.0 issn 2563-9269 237 table 3. mean (sd) acceptability scores for interventions targeting family intervention total sample women men t-test (p-level) effect size education 2.67 (0.83) 2.67 (0.98) 2.67 (0.66) 0.01 (.98) 0.00 referral to psychological counselling and/or support 2.52 (0.96) 2.68 (1.08) 2.33 (0.81) 1.08 (.28) 0.35 multi-component intervention 2.38 (0.87) 2.63 (0.90) 2.10 (0.76) 1.88 (.06) 0.62 ihtp, 2(2), 223-239, 2022 cc by-nc-nd 4.0 issn 2563-9269 238 table 4. mean (sd) acceptability scores for interventions targeting the relationship intervention total sample women men t-test (p-level) effect size cultural context support 2.83 (0.87) 3.07 (0.95) 2.55 (0.69) 1.84 (.07) 0.61 family mediation 2.68 (0.86) 2.94 (0.95) 2.39 (0.66) 2.03 (.05) 0.66 ihtp, 2(2), 223-239, 2022 cc by-nc-nd 4.0 issn 2563-9269 239 table 5. mean (sd) acceptability scores for interventions targeting the social environment intervention total sample women men t-test (p-level) effect size social support for older adults 2.87 (0.66) 2.97 (0.72) 2.77 (0.60) 0.89 (.19) 0.29 advocacy 3.26 (0.56) 3.44 (0.59) 3.05 (0.47) 2.15 (.03) 0.72 community-outreach 3.27 (0.62) 3.39 (0.57) 3.14 (0.67) 1.19 (.24) 0.39 ihtp, 2(3), 329-340, 2022 cc by-nc-nd 4.0 issn 2563-9269 329 therapeutic itineraries of children with the early loss of primary teeth: a qualitative phenomenological study fernando valentim bitencourt1, cristiane falcão gaspar2, carolina scheffler2, jonas almeida rodrigues3, ramona fernanda ceriotti toassi4 1department of dentistry and oral health, section for periodontology, aarhus university, aarhus, denmark; 2department of preventive and social dentistry, school of dentistry, federal university of rio grande do sul, porto alegre, brazil; 3department of surgery and orthopedics, faculty of dentistry, federal university of rio grande do sul, porto alegre, brazil; 4department of preventive and social dentistry, school of dentistry, postgraduate program in teaching in health science. federal university of rio grande do sul, porto alegre, brazil corresponding author: f.v. bitencourt (fvbitencourt@dent.au.dk) abstract background: children with untreated dental caries tend to have a higher prevalence of early tooth loss, causing physical, psychosocial, and financial impacts on children and their families. the present study aims to understand the therapeutic itineraries of children with the early loss of primary teeth due to caries by analyzing the access to and integrality of care. methods: this was a qualitative phenomenological study. participants were caregivers, aged 18 years or older, of children up to 12 years of age who attended the university dental clinic of a public university in southern brazil. analysis of medical records and interviews were performed. the saturation criterion defined the sample size (n=44). results: public and private health services were accessed by families in the search for treatments for children's oral health conditions until they reached the university dental clinic. children experiencing suffering and pain, who had had multiple extractions, and families affected financially and emotionally by the oral health condition of their children highlighted these itineraries. the resilience of these families in overcoming the challenges experienced and their continuous efforts to find solutions for the oral health care of their children were emphasized. their relations with students and teachers at the university dental clinic were also discussed. conclusion: the study showed a range of paths taken by children and their families and suggested weaknesses in ensuring the integrality of care for children in the brazilian national health system. qualitative analysis of the therapeutic itineraries of children’s families presented in this study is proposed as a complementary tool for health care. this study has the potential to contribute to the evaluation of health services in the country, strengthening children's oral health. keywords integrality in health, pediatric dental care, qualitative research, therapeutic itinerary background in brazil, implementing a national universal health system (sus) and the national oral health policy has brought advances in terms of brazilians' needs and rights to health (paim et al., 2011; lima, carvalho & coeli, 2018; pucca júnior et al., 2009). this policy prioritized a health care model organized by lines of care (i.e., child, adolescent, adult, and elderly), involved all levels of complexity and the definition of reference and counter-reference system. with this, there was an increase in access and integrality of oral health actions, as well as funding for oral health teams in primary health care settings (pucca júnior et al., 2009; pucca júnior et al., 2015). ihtp, 2(3), 329-340, 2022 cc by-nc-nd 4.0 issn 2563-9269 330 despite advances in health policies, dental caries persists as a serious public health problem and one of the most prevalent chronic diseases in the world (peres et al., 2019), primarily affecting children from families with low socioeconomic status (nunes & perosa, 2017). data from the last epidemiological survey on oral health in brazil showed that, at the age of five, a brazilian child has, on average, the dmft index (i.e., the sum of decayed teeth, with indicated extraction and filled teeth in the deciduous dentition) of 2.43 primary teeth with caries experience (ministério da saúde, 2011). moreover, these primary teeth with caries had the decayed component predominating and were responsible for more than 80% of the index (ministério da saúde, 2011). furthermore, a nationwide study showed that approximately one-fifth of oral health teams do not perform dental care for children up to five years of age (essvein et al., 2019), as recommended in primary health care. at present, there are thousands of children without access to oral health care in brazil (essvein et al., 2019). children with untreated dental caries tend to have a higher prevalence of early tooth loss (monte-santo et al., 2018). the early loss of deciduous teeth can affect the quality of life of children and their families (dainezi et al., 2015; nóbrega, barbosa & brum, 2018; rodd et al., 2011). this is associated with physical impacts in children, including malocclusion, delayed or accelerated eruption of permanent teeth (bezerra & nogueira, 2012) and phonetic and masticatory impairment (nóbrega, barbosa & brum, 2018). furthermore, psychosocial impacts result from conditions that affect aesthetics and impair social interaction (bitencourt, rodrigues & toassi, 2021; nadelman et al., 2020). it may also indirectly impact the family that cares for these children, causing the loss of working days and expenses resulting from dental consultations and treatments (dainezi et al., 2015; carlos & martins, 2017). a study which analyzed data from the family budget survey (20082009) showed that, on average, in one year, brazilians spent r$ 42.19 on dental care and highlighted demographic and socioeconomic differences in the distribution of expenditures on oral health (cascaes et al., 2017). the effect of early tooth loss on children's lives is a complex phenomenon, as it is marked by changes in the 'physical body' that extend to the 'social world' in which the child lives and relates to others (merleauponty, 2002). studying the therapeutic itinerary, identifying choices and paths taken by these children and their families to solve oral health problems based on the social context/process in which they live, has the potential to contribute to the quality of health care (demétrio, santana & pereira-santos, 2019; gerhard, 2007). recent studies which aim to address the relationship between oral health and therapeutic itinerary in children and family contexts are not well explored by researchers and health managers. therefore, this study aims to understand the therapeutic itineraries of children with the early loss of primary teeth due to caries by analyzing the access to and integrality of care. methods study design and participants we conducted a qualitative study using semistructured interviews and qualitative thematic analysis through the lens of merleau-ponty. throughout this study, we followed the consolidated criteria for reporting qualitative research (coreq) consolidated criteria for improving the quality of qualitative research reports (appendix 1) (tong, sainsbury & craig, 2007). the setting was the university dental clinic, affiliated with a public university in southern brazil. inclusion criteria consisted of being a mother, father or caregiver aged 18 years or older who accompanied the child at the dental appointment. children were to be up to 12 years old and have early loss of primary teeth caused by caries. theoretical foundations an empirical phenomenological approach (merleau-ponty, 2002) was used to obtain in-depth information on the paths taken by caregivers in the search for therapeutic care. the experience of the early loss of deciduous teeth was immersed in the routines of the lifeworld by scientific knowledge. this means a body experienced by the subject as an object of scientific investigation. for this purpose, the ihtp, 2(3), 329-340, 2022 cc by-nc-nd 4.0 issn 2563-9269 331 understanding of lived experiences is linked to the idea of therapeutic itineraries. the therapeutic itinerary is defined in socioanthropological literature as the paths taken by the subjects to solve a health problem, loaded with meanings and mediated by experiences, in complex networks of social relationships (demétrio, santana & pereira-santos, 2019). the therapeutic itinerary mapping prioritized the caregivers' narratives of the children’s paths and behaviours in search of extraction due to tooth decay. it identified the different points and forms in accessing the public health services before using the university's oral health service. data collection data collection was performed in two stages and occurred concurrently with data analysis. firstly, medical records were analyzed to identify children with the early loss of primary teeth. these teeth losses should have been due to extensive carious lesions that led to tooth extractions. children with the early loss of primary teeth were considered to have had a record with the absence of one or more primary dental elements in the clinical examination of the dental history. the period considered was at least one year before the eruption of the permanent successor (araújo, 2002). in cases where a radiographic examination was present in the medical record, the evaluation of the early primary loss was complemented by analyzing the eruption stage of the permanent successor tooth. this is because the early loss happens before the complete coronary formation and when the root formation has already begun (nolla stage up to 7) (moyers, 1991). medical records with inconsistent information that were difficult to understand and those in which the dental clinical examination was not complete were excluded from the study. in addition, individual interviews were conducted with the caregiver by a single researcher (fvb), who the senior researcher trained in qualitative methods (rfct). to minimize possible biases and maintain methodological rigidity, one researcher transcribed every five interviews conducted, and each interview was randomly selected to be simultaneously heard and read by the researchers. all interviews were performed in a private room to avoid any embarrassment and unnecessary exposure of the study participants. a scripted semi-structured interview was used for data collection, which facilitated the introduction of questions to deepen the level of information given by caregivers. fortyfour caregivers were invited to participate in this study during the child's dental appointment at the university dental clinic. at this stage, the objective, format of the interview and data confidentiality were explained. no participants refused to participate or were excluded from the analysis. each interview lasted around 40 minutes. the interviews were recorded by a tape, fully transcribed, and then reconstructed in a narrative form. the same researcher transcribed the audio recordings verbatim within seven days of the interviews and reviewed by a senior researcher (rfct) for accuracy. the interviews, original transcriptions, and data analysis were in portuguese. the interviews were translated into english and then backtranslated by a professional experienced in the field to ensure meanings were retained. the sample size was defined by the principle of saturation criterion (fontanella, ricas & turato, 2008). the data collection ended when the researchers observed that responses were being replicated in the interviews, and the last interview brought no new insight or information. we obtained saturation on the sources with forty-four participants. data analysis the qualitative analysis comprehended the transcriptions of the interviews, in-depth material reading, the mapping of findings, the writing of a narrative summary and categories, and finally, the therapeutic itinerary elaboration to provide an understanding in a temporal perspective of the path taken by children with teeth loss. the textual material produced by the interviews was imported into the software atlas.ti (visual qualitative data analysis) and interpreted through the analysis of thematic content proposed by bardin (2011) (table 1). the analysis followed the stages of pre-analysis, exploration of the material, treatment of ihtp, 2(3), 329-340, 2022 cc by-nc-nd 4.0 issn 2563-9269 332 the results obtained and interpretation. pre-analysis included free-floating reading and exhaustive contact with the collected data. during the exploration stage, the raw data material was coded to reach the text's core understanding. in the stages of pre-analysis and the exploration of the material, information was sought that described the paths/services/spaces travelled by these children and their families in the search for oral health care until they arrived at the university dental clinic. this step highlighted feelings, barriers, and facilitators of these experiences. in the treatment of the results obtained, the researchers performed inferences and interpretations according to the theoretical framework and the proposed objectives (bardin, 2011). confidentiality was assured by using numbers instead of names (e.g., interview 1, interview 2) and removing identifying information from the transcripts. ethical consideration the study was approved by the ethics committee of the federal university of rio grande do sul (#1.652.310), following the helsinki declaration of 1975 on experiments involving human subjects. the study objectives and voluntary nature of the study were explained to participants, and oral informed consent was obtained from all participants before each interview. all audio recordings and transcripts were saved on a password-protected document and device. results forty-four caregivers of children with early tooth loss due to caries and whose children were undergoing dental treatment participated in the study. of the interviewees, 28 were mothers, 10 were fathers, 4 were grandmothers, and 2 were aunts with an age range between 20 and 59 years. table 2 represents the therapeutic itinerary taken by the families for the oral health of the child until they accessed the university dental clinic. from the analysis of the narratives produced by the caregivers, three main categories emerged. these categories expressed the ways and meanings that these families attribute to the health-disease-care process of their children. therapeutic itinerary: choices and paths the caregivers' reports showed that different health care settings public and private were used by families for the oral health care of their children until they arrived at the university dental clinic. access to primary health care services has been highlighted in the experiences of these families as the reference service for their children's dental care. the search for care in primary health care was motivated by situations of dental pain/emergency and fractured teeth associated with caries disease that led to extractions and the early loss of primary teeth. families reported situations where they could not access dental treatment due to the absence of the oral health team in the primary health care, leading them to seek other health services. when families accessed the oral health service through the primary health care of the national health system, the families reported that the care provided was not resolutive, considering the children's needs for specialized treatments (root canal treatment due to pulpitis) or intraoral radiographic exams. these experiences contributed to the families having to seek another service for the continuity of the treatment. in these situations, involving a lack of a resolution to complex oral health problems, a loss of working days for caregivers and loss of classes for children, families have resorted to private dental services to continue treatment before gaining access to the university dental clinic. as a first choice, other families have opted for dental care directly in the private service. repeatedly there were reports of a lack of resoluteness to the children's oral health issues in these services. in the perception of the families, the high costs generated by the payment of treatments brought financial impacts, leading to the search for a new health facility for the dental treatment of their children. in different reports, referrals to the dental clinics of the university ihtp, 2(3), 329-340, 2022 cc by-nc-nd 4.0 issn 2563-9269 333 were provided by the dentist themselves, who were performing the children's treatment in other services. resilience and challenges: access and continuity of care despite the difficulties related to the continuity of dental treatment, the families showed an ability to adapt, overcoming the challenges experienced and constantly seeking solutions to care for their children's oral health. there was a sense of responsibility and guilt among the caregivers for the illness and suffering of their children, associated with problems involving the `mouth-tooth-body´ connection. in this context, the possibility of continuing the treatment until its conclusion brought the family the perception of "not failing the child", rescuing their role as being responsible for the care and a resolution of their children's health problems. expressions of experiences at the end of the treatment, the families expressed the impact of the experience of resolutive care in the lives of their children, who were happy, without caries, pain, and reports of discrimination due to their oral health condition, enabling them to return to their daily activities. the caregivers perceived the mode of treatment as a "different experience from the one they had with dentists" when they needed dental treatment, leading to the perception of the creation of bonds with these professionals. they mention the "attention, calm, and patience" in the professionalpatient relationship as characteristics that differentiate professionals in the university dental clinic. discussion our study uniquely captured a deeper understanding of therapeutic itineraries among children with the early loss of primary teeth due to caries by analyzing access to comprehensive care. by conceptualizing caregivers as the expert on their child’s life experiences, we identified the impact of dental caries and the search for resolutive treatments. the analysis concerned the dynamics of family organization and making decisions related to the health of their children, who were not yet fully able to verbalize their emotions and anguish. while prior research has explored tooth loss experience and its biological impact (spodzieja & olczak-kowalczyk, 2022), our findings underscore how these caregivers access the health service to resolve the early loss of primary teeth due to dental caries in the different levels of care. we consider this research unprecedented in that it expresses the experiences of a body with its human interactions, not separating it from the world in which these experiences are lived (merleau-ponty, 2002). in addition, our findings can support actions for care reorganization and provide opportunities for future research and insights on the subject. the prevalence of caries in brazilian children, at the age of five years old, is approximately 53.4%. dental care is a vital strategy for evaluating oral conditions. comassetto et al. (2019) revealed that 68.2% of children up to 5 years old have never been to the dentist. their main reason for not having had a dental appointment was due to a lack of access to a health centre, with the most searched locations being private dental offices (43.9%) and public health centres (39.5%). the present study highlights the early loss of primary teeth, for which caries are the main reason. despite the advances, the brazilian epidemiological situation related to caries and tooth loss in children from low-income populations is a cause for concern. allied to that remains a limited number of offers and procedures performed by specialized services in pediatric dentistry. paim (2018) demonstrated that throughout the 30 years of sus, even though brazil has expanded the offer and access to health services and actions, there is an insufficiency of public infrastructure and a lack of ascendant planning. moreover, there are difficulties with the regionalization of networks and impasses for change in the models of attention and health practices compromise the universal and equal access to health actions and services. regarding children, specifically among the factors that hinder access, there is a delay in care due to a lack of professional availability and a ihtp, 2(3), 329-340, 2022 cc by-nc-nd 4.0 issn 2563-9269 334 lack of time for the child's guardian (damasceno et al., 2021). researchers have used quantitative methods to identify and assess factors associated with access to oral health services among children (azanedo et al., 2017). however, the research does not provide indepth information to support the facets between the life trajectories of children and experiences of tooth loss in health services from a phenomenological perspective. therefore, in this study, the therapeutic itineraries mapping prioritized the caregivers' narratives of the children’s itineraries and behaviour in demand for extraction due to tooth decay. the categories emerging from the analysis on the mapping of therapeutic itineraries should be viewed through two key concepts of 'body' (i.e., the 'physical body' and the 'social body'). while the physical body represents the body of lived experiences, the social body symbolizes the culture and the individual's personality. given the need for a qualitative analysis to better understand the behaviour and beliefs of children and their families, this study provides the different paths to access public health services before using the university dental clinic. in this research, the results showed children affected by caries disease with complex oral health care needs had to go through different services to solve their health problems. for the families that accessed the public service, the advanced clinical condition of their children’s dental problems (which were already indicated for endodontic treatment not solved in primary health care), led to a rupture in the guarantee of the constitutional principle of the integrality of care in the sus. with this fragility in the flow of care in the oral health care network, families tend to seek private health services, which impacts the budget of brazilian families (moraes et al., 2022). in many situations, this makes the continuity of dental treatment and comprehensive care unfeasible. comprehensive care is an essential attribute in assessing the quality of care and health services, which must respond to the needs of people, families, and communities at different levels of care to function as a network (conill, 2004; fontoura, 2006). our findings are supported by a qualitative study which used focus groups with families of children and adolescents with chronic diseases (nóbrega et al., 2015). in the research, the itinerary of families in the health services was characterized by gaps such as the long waiting time for health care and fragilities in long-term care. these gaps leave children with chronic diseases (i.e., caries) and increased vulnerability due to a lack of follow-up and adequate management of the disease in health services. understanding each person´s state of health can be challenging. the health-disease-care process refers to all the variables that involve health and disease, considering that both are interconnected and are the consequence of the same factors (i.e., biological, social, cultural, and economic) (santos et al., 2014). thus, addressing the meaning that each person attributes to this process can help us understand their choices of therapeutic itinerary in search of preventive measures and adherence to treatment, and the integrality of care. upon arrival at the university dental clinic, caregivers showed satisfaction with the care received. this feeling, which was previously one of “guilt/blame” for their children's condition of disease and suffering, was transformed into satisfaction for "not failing." this was expressed both by the possibility of performing all the necessary oral health procedures, solving their children's oral health problems and by the bonding relationship established with the professionals. this finding corroborates what has been found in the literature, showing that care is only possible where there is a professional-patient relationship and that the care provided has effects not only on the person with the disease but also on the way of life of each caregiver and the family (corrêa et al., 2011). another issue to highlight is the analysis of the therapeutic itinerary from the perception of families, who are concrete human beings living in a specific time and place (merleau-ponty, 2002), and are responsible for making decisions related to the life of their children. this approach allowed a more profound understanding of how much the oral health condition of children has the potential to affect the dynamics of the family organization (matza et al., 2004; talenkar et al., 2005). our theoretical reasoning allowed us to analyze and explore how families experience health disparities and overcome these disparities by providing culturally specific sources of ihtp, 2(3), 329-340, 2022 cc by-nc-nd 4.0 issn 2563-9269 335 resilience and strength. the results showed that families were affected financially and emotionally by the oral health condition of their children, leading caregivers to miss days of work and their children's schooling and blame themselves for the children's pain and caries disease. health policymakers should not neglect such findings, and the findings should be part of the care strategies. our results reinforced the previous evidence that health problems can produce impacts that tend to increase family stress (hattangadi et al., 2020). the present study emphasizes the need for integrated and continued care for children in primary health care, concerning services that address the most complex oral health problems, such as dental caries and its sequelae. both are still prevalent in modern life and are the most frequent cause of early tooth loss in the deciduous dentition of brazilian children (bezerra; nogueira, 2012; brandenburg; casanova, 2018). a qualitative study conducted in primary care units in brazil using a hermeneutic methodological framework proposed approaches to the integrality of children's care through two dimensions. the first dimension is attitudinal and involves the health team and the family, where there is a focus on humanized care, with qualified attention to health problems. secondly, an organizational dimension exists to establish adequate health system flow (finkler et al., 2014). actions focusing on health promotion beyond the treatment of oral diseases should be valued in primary health care and integrated into the health care network in the country. these actions might include the family context in the care process from the child's first years of life (comassetto et al., 2019; pereira, 2020). this study has the limitation of having been conducted with a sample of children with complex oral health needs, seen in a university dental clinic, whose access is limited to a restricted number of patients covered. multicenter qualitative studies involving services of the national health system care network are recommended to analyze the reality of access to health care and the integrality of brazilian children in the right to receive health care. implications the qualitative analysis of the therapeutic itinerary of children was enhanced by the inclusion of the caregivers' perceptions, as this made it possible to understand the complexity of knowledge, practices, and health needs. the findings contribute to the greater dialogue necessary between the clinic and the biography of children and their families. conclusions the results of this research, in a specific and restricted service of oral health care linked to a public university in southern brazil, show a plurality of paths taken by the children and their families. the findings suggest there are weaknesses in ensuring the completeness of care for children in the sus network. when families could not follow the therapeutic path established for the treatment of their children, care was interrupted, and a new and more complex health demand was generated. this caused shortand long-term consequences that expressed themselves in pictures of pain, discomfort, and prolonged and costly treatments, which can lead to early dental loss, affecting children and families. it is necessary to expand the spaces for discussion and improve the permanent education on specialized services in odontopediatrics for more complex cases. future research related to the oral health of children should include their families to understand better the strengths and challenges present in the network of care in the sus. references araujo, f. m. (2022). relação entre o tipo de aleitamento e o uso de chupeta. j. bras. odontopediatr. odontol. bebê, 3(25), 235-240. azañedo d., hernández-vásquez a., casas-bendezú m., gutiérrez c, agudelo-suárez a. a., cortés s (2017). factors determining access to oral health services among children aged less than 12 years in peru. f1000research, 12; 6:1680. https://doi.org/10.12688/f1000research.12474.1 bardin, l. (2011). análise de conteúdo. são paulo: edições 70. bezerra, e. s. m., nogueira, a. j. s. (2012). prevalência de perdas dentárias precoces em crianças de população ribeirinha da região amazônica. pesquisa brasileira em odontopediatria e clínica ihtp, 2(3), 329-340, 2022 cc by-nc-nd 4.0 issn 2563-9269 336 integrada, 12(1), 93-08. https://doi.org/10.4034/pboci.2012.121.15 bitencourt, f. v., rodrigues, j. a., & toassi, r. f. c. (2021). narratives about a stigma: attributing meaning to the early loss of deciduous teeth on children’s caregivers. brazilian oral research, 35. https://doi.org/10.1590/1807-3107bor2021.vol35.0044 brandenbrug, o. j. e casanova, m. l. m. (2013). a relação mãe-criança durante o atendimento odontológico: contribuições da análise do comportamento. estudos de psicologia, 30(4), 629-640. carlos, m. a., & martins, l. f. b. (2017). percepção dos pais sobre a qualidade de vida relacionada à saúde bucal de crianças atendidas no complexo odontológico do centro universitário católica de quixadá. mostra científica do curso de odontologia, 2(1). cascaes, a.m., camargo, m. b. j., castilhos, e. d. de, silvam a. e. r., & barros, a. j. d. (2017). gastos privados com saúde bucal no brasil: análise dos dados da pesquisa de orçamentos familiares, 2008-2009. cadernos de saúde pública, 33(1). https://doi.org/10.1590/0102-311x00148915. comassetto, m. o., baumgarten, a., kindlein, k. de a., hilgert, j. b., figueiredo, m. c., & faustino-silva, d. d. (2019). acesso à saúde bucal na primeira infância no município de porto alegre, brasil. ciência & saúde coletiva, 24(3), 953–961. https://doi.org/10.1590/141381232018243.29082016 conill, e. m. (2004). avaliação da integralidade: conferindo sentido para os pactos na programação de metas dos sistemas municipais de saúde. cadernos de saúde pública, 20(5), 1417–1423. https://doi.org/10.1590/s0102311x2004000500038 corrêa, g. h. l. s. t., bellato, r., araújo, l. f. s. de, & hiller, m. (2012). itinerário terapêutico de idosa em sofrimento psíquico e família. ciência, cuidado e saúde, 10(2), 274-283. https://doi.org/10.4025/ciencuidsaude.v10i2.104 62 dainezi, v. b., inagaki, l. t., varanda, t., pascon, f. m., & puppin-rontani, r. m. (2015). reabilitação estética e funcional na primeira infância: relato de caso. revista da associacao paulista de cirurgioes dentistas, 69(4), 387–393. http://revodonto.bvsalud.org/scielo.php?script=s ci_abstract&pid=s000452762015000300012&lng=pt&nrm=iso&tlng=pt demétrio, f., santana, e. r. de, & pereira-santos, m. (2019). o itinerário terapêutico no brasil: revisão sistemática e metassíntese a partir das concepções negativa e positiva de saúde. saúde em debate, 43(spe7), 204–221. https://doi.org/10.1590/0103-11042019s716 essvein, g., baumgarten, a., rech, r. s., hilgert, j. b., & neves, m. (2019). dental care for early childhood in brazil: from the public policy to evidence. revista de saúde pública, 53. https://doi.org/10.11606/s15188787.2019053000540 finkler a. l.,viera c. s., tacla m. t., toso b. r. (2014). the access and the difficulty in resoluteness of the childcare in primary health care. acta paulista de enfermagem, 27 (6): 548553. https://doi.org/10.1590/19820194201400089 fontanella, b. j. b., ricas, j., & turato, e. r. (2008). amostragem por saturação em pesquisas qualitativas em saúde: contribuições teóricas. cadernos de saúde pública, 24(1), 17–27. https://doi.org/10.1590/s0102311x2008000100003 fontoura, r. t., & mayer, c. n. (2006). uma breve reflexão sobre a integralidade. revista brasileira de enfermagem, 59(4), 532–536. https://doi.org/10.1590/s003471672006000400011 gerhard, t. e. e. (2007). itinerários terapêuticos e suas múltiplas dimensões: desafios para a prática da integralidade e do cuidado como valor. in: pinheiro & mattos, r. a. (org.). razões públicas para a integralidade em saúde: o cuidado como valor. 1. ed. rio de janeiro: ims/uerj/cepesc/abrasco, 1, 279-300. hattangadi, n., cost, k. t., birken, c. s., borkhoff, c. m., maguire, j. l., szatmari, p., & charach, a. (2020). parenting stress during infancy is a risk factor for mental health problems in 3-year-old children. bmc public health, 20(1). https://doi.org/10.1186/s12889-020-09861-5 lima, l.d. de, carvalho, m. s., & coeli, c. m. (2018). sistema único de saúde: 30 anos de avanços e desafios. cadernos de saúde pública, 34(7). https://doi.org/10.1590/0102-311x00117118 matza, l. s., swensen, a. r., flood, e. m., secnik, k., & leidy, n. k. (2004). assessment of health-related ihtp, 2(3), 329-340, 2022 cc by-nc-nd 4.0 issn 2563-9269 337 quality of life in children: a review of conceptual, methodological, and regulatory issues. value in health, 7(1), 79–92. https://doi.org/10.1111/j.15244733.2004.71273.x merleau-ponty, m. (2002). phenomenology of perception. new york: routledge; 2002. ministério da saúde. projeto sb brasil 2010: pesquisa nacional de saúde bucal 2010. resultados principais. brasília, 2011. acesso em: 18 jan. 2021. http://bvsms.saude.gov.br/bvs/publicacoes/sbbr asil_2010.pdf. monte-santo, a. s., viana, s. v. c., moreira, k. m. s., imparato, j. c. p., mendes, f. m., & bonini, g. a. v. c. (2018). prevalence of early loss of primary molar and its impact in schoolchildren’s quality of life. international journal of paediatric dentistry, 28(6), 595–601. https://doi.org/10.1111/ipd.12416 moraes, r. m. de, santos, m. a. b. dos, werneck, h. f., paula, m. n. d., & almeida, r. t. de. (2022). gastos das famílias com planos de saúde no brasil e comprometimento da renda domiciliar: uma análise da pesquisa de orçamentos familiares (2017/2018). cadernos de saúde pública, 38(3). https://doi.org/10.1590/0102-311x00354320 moyers, r. e. (1991). etiologia da maloclusão. ortodontia. guanabara-koogan, 127-140. nadelman, p., bedran, n., magno, m. b., masterson, d., castro, a. c. r., & maia, l. c. (2020). premature loss of primary anterior teeth and its consequences to primary dental arch and speech pattern: a systematic review and meta‐analysis. international journal of paediatric dentistry, 30(6), 687–712. https://doi.org/10.1111/ipd.12644 nóbrega, m. l., barbosa, c. c. n., & brum, s. c. (2018). implicações da perda precoce em odontopediatria. revista pró-universus, 9(1), 61– 67. http://editora.universidadedevassouras.edu.br/i ndex.php/rpu/article/view/1306 nóbrega v. m da., reichert a. p. s da., viera c. s., collet n. (2015). longitudinality and continuity of care for children and adolescents with chronic diseases. escola anna nery revista de enfermagem. 19(4): 656-663. https://doi.org/10.5935/1414-8145.20150088 nunes, v. h., & perosa, g. b. (2017). cárie dentária em crianças de 5 anos: fatores sociodemográficos, lócus de controle e atitudes parentais. ciência & saúde coletiva, 22(1), 191–200. https://doi.org/10.1590/141381232017221.13582015 paim j. s. (2018). sistema único de saúde (sus) aos 30 anos. ciência & saúde coletiva, 23 (6), https://doi.org/10.1590/141381232018236.09172018. paim, j., travassos, c., almeida, c., bahia, l., & macinko, j. (2011). the brazilian health system: history, advances, and challenges. the lancet, 377(9779), 1778-1797. https://doi.org/10.1016/s0140-6736(11)60054-8 pereira, f. a. de o., assunção, l. r. da s., ferreira, f. m., & fraiz, f. c. (2020). urgência e descontinuidade do cuidado em saúde bucal de crianças e adolescentes. ciência & saúde coletiva, 25(9), 3677–3684. https://doi.org/10.1590/141381232020259.33232018 peres, m. a., macpherson, l. m. d., weyant, r. j., daly, b., venturelli, r., mathur, m. r., listl, s., celeste, r. k., guarnizo-herreño, c. c., kearns, c., benzian, h., allison, p., & watt, r. g. (2019). oral diseases: a global public health challenge. the lancet, 394(10194), 249–260. https://doi.org/10.1016/s0140-6736(19)31146-8 pucca junior, g.a., costa, j.f.r., chagas, l. de d., & silvestre, r.m. (2009). oral health policies in brazil. brazilian oral research,23(suppl 1), :9-16. http://doi.org/10.1590/ s180683242009000500003 pucca junior, g.a., gabriel, m., araujo, m.e., & de almeida, f. c. s. (2015). ten years of a national oral health policy in brazil. journal of dental research, 94(10), 1333-1337. https://doi.org/10.1177/0022034515599979 rodd, h. d., marshman, z., porritt, j., bradbury, j., & baker, s. r. (2011). oral health-related quality of life of children in relation to dental appearance and educational transition. british dental journal, 211(2), e4–e4. https://doi.org/10.1038/sj.bdj.2011.574 santos d. de s., tenório e. de a., brêda m. z., mishima s. m. (2014). the health-disease process and the family health strategy: the user's perspective. revista latino-americana de enfermagem, 22 (6): 918-925. https://doi.org/10.1590/01041169.0002.2496 spodzieja, k., & olczak-kowalczyk, d. (2022). premature loss of deciduous teeth as a symptom ihtp, 2(3), 329-340, 2022 cc by-nc-nd 4.0 issn 2563-9269 338 of systemic disease: a narrative literature review. international journal of environmental research and public health, 19(6), 3386. https://doi.org/10.3390/ijerph19063386 talekar, b. s., rozier, r. g., slade, g. d., & ennett, s. t. (2005). parental perceptions of their preschoolaged children’s oral health. journal of the american dental association (1939), 136(3), 364– 372; quiz 381. https://doi.org/10.14219/jada.archive.2005.0179 tong, a., sainsbury, p., & craig, j. (2007). consolidated criteria for reporting qualitative research (coreq): a 32-item checklist for interviews and focus groups. international journal for quality in health care, 19(6), 349–357. https://doi.org/10.1093/intqhc/mzm042 https://doi.org/10.1093/intqhc/mzm042 ihtp, 2(3), 329-340, 2022 cc by-nc-nd 4.0 issn 2563-9269 339 table 1. synthesis of the meanings that emerged from the interviews meaning unit condensed meaning unit theme "she [child] had treatment at the health centre. in the end we lost work, we lost classes, we lost ... and it wasn't being solved. then i paid privately. and now we are doing it here”. report of the different health care spaces sought in search of effective treatment oral health care: choices and paths travelled "he's super happy that he's getting his teeth fixed and going to school, doing all his activities normally. something that was bad and decayed has come out and something new will come" resolutivity care perceived by the family resolutivity care and its consequences "what it takes up is time because time is lost to come here, to spend time waiting. although i am not complaining, i am exposing what this causes. it is necessary to change the routine, i have had to change shifts, so i don't miss out because i think the work of the university dental clinic is very important" changes experienced by families and their children in the search for a resolutive health service resilience facing the challenges of resolutive care ihtp, 2(3), 329-340, 2022 cc by-nc-nd 4.0 issn 2563-9269 340 table 2. characteristics of participants according to therapeutic itineraries, sex and degree of caregiver's kinship and their children therapeutic itineraries caregiver's sex degree of caregiver's kinship and their children total primary health care, university dental clinic 8 women 2 men 8 mothers 1 father 1 aunt 10 primary health care, private service, university dental clinic 4 women 3 mothers 1 grandmother 4 private service, primary health care, university dental clinic 4 women 1 man 4 mothers 1 father 5 private services, primary health care, university dental clinic 2 women 2 mothers 2 private service, primary health care, public hospital, university dental clinic 1 woman 1 grandmother 1 private service, university dental clinic 7 women 4 men 6 mothers 4 fathers 1 grandmother 11 university dental clinic, private service, university dental clinic 1 woman 1 mother 1 university dental clinic 6 women 4 men 4 mothers 4 fathers 2 aunts 10 ihtp, 2(3), 286-297, 2022 cc by-nc-nd 4.0 issn 2563-9269 286 exploring health care for transgender people in the brazilian health system: qualitative descriptiveinterpretative study mateus aparecido de faria1, tiago sousa paiva2, andressa marques cornelli3, carolina feijó bitencourt voigt3, cristianne maria famer rocha4, celina maria modena1 1rené rachou institute, oswaldo cruz foundation, belo horizonte, minas gerais, brazil; 2centro universitário ritter dos reis, porto alegre, rio grande do sul, brazil; 3departament of colective health, escola de enfermagem, federal university of rio grande do sul, porto alegre, rio grande do sul, brazil; 4escola de enfermagem, federal university of rio do grande do sul, porto alegre, rio grande do sul, brazil corresponding author: m. a. de faria (mateusfaria18@gmail.com) abstract the guarantee of rights in brazil is legitimized through its constitution of the republic and its national health system needs to follow a list of prerogatives that include, also, transgender people. currently there are situations in which the expectation of rights is broken and the free exercise of life of this population is prevented. this article analyzes access to health services by trans people in the health system in brazil. the investigation was carried out in cities in the metropolitan region of a municipality in southeastern brazil, through qualitative, exploratory and descriptiveinterpretive research. the trans population faces many difficulties in accessing the services that make up the brazilian health system, such as the lack of qualification of health professionals, barriers to the use of the social name and structural prejudices in society. keywords health services accessibility; social vulnerability; transgender persons; unified health system background with the promulgation of the constitution of the federative republic of brazil in 1988, health becomes a right of every citizen and the duty of the brazilian state to guarantee it through public health and social policies. in this context, the unified health system (sus – sistema único de saúde) was created with the aim of offering the brazilian population services of different levels of health care (hospital, specialized and community based). health care in the sus must be based on principles such as universality and equal access and must occur without prejudice or privilege of any kind, aiming, in this way, to guarantee a service free from any type of discrimination to the person who seeks public health services (brasil, 1988; 1990). based on the principles and considering the charter of rights of sus users, health services should ensure attention that is humanized, welcoming, free from prejudice and judgment to all individuals, guaranteeing the right to promotion, prevention, and health rehabilitation at all levels of care (brasil, 2009). however, in the daily lives of these institutions, it is observed that transgender person – an individual whose gender identity or expression differs from that of their assigned sex at birth find it difficult to achieve care that meets their health specificities (ziegler et al., 2019). it is commonplace that gender identity is confused with concepts such as sexual orientation, however, the term refers to the way a person identifies and recognizes himself based on the gender standards that are attributed by society (silva et al., 2016). ihtp, 2(3), 286-297, 2022 cc by-nc-nd 4.0 issn 2563-9269 287 the barriers that emerge in access to the health system are the convergence of different factors, as shown in extensive reviews that point to difficulties in health care access, avoidance of care and perceived discrimination in health care. in addition, this context of violation of rights may reflect a society that still produces stigmatization and different forms of violence that are based on heteronormative patterns and customs (rocon et al., 2019). in a study developed during the first year of the covid-19 pandemic, it was sought to identify the main difficulties for trans people in accessing the brazilian health system. the main results showed that the main barriers are discrimination, pathologization of transsexuality, lack of qualification of health professionals and absence of specific public health policies for this group (rocon et al., 2020). such difficulties make some brazilian health services become hostile spaces for trans people, directly impacting their health condition. health policies for trans people in brazil, one of the advances towards guaranteeing the rights of trans people occurred in late 2010. on that occasion, the brazilian ministry of health instituted the transexualizador process in sus that enabled university hospitals to carry out the specialized procedures necessary for genderaffirming process, demanded for decades (brasil, 2008). sometime later, from pressure from social movements, a review of the care logic for this population group was carried out, resulting in ordinance no. 859 of the health care secretariat of the ministry of health, which guides the structuring of a comprehensive care network that goes from primary to specialized care, with the strengthening of outpatient care services (brasil, 2013). still in 2010, two other ordinances strengthened the clinical guidelines and protocols necessary for the expansion and institutionalization of the gender-affirming process in sus (brasil, 2013). this service is currently included in the national health policy for lesbians, gays, bisexuals, transvestites and transsexuals (lgbt), a political artifact dedicated to government actions and strategies aimed at guaranteeing the right to health and life for this population (brasil, 2011). even with all the legal framework and institutional regulations in the health sector, there are still "walls" in the social imaginary and within health services that prevent humanized and welcoming care for this group. it is understood that barriers to access and continuity of care for trans people are multidimensional organizational, political, socioeconomic, symbolic, and technical barriers are rooted in the structure of sus and other partner institutions in trans health care (carvalho & chazan, 2019). in addition, mobilizations have delegitimized the demand and existence of these bodies on the political scene, in the name of preserving the values of the traditional family or to protect children. conservative mobilizations have become even more robust in brazil, starting in 2018 with the rise to power of an ultra-conservative government linked to the extreme right. with this, a scenario of stagnation and setbacks in programs emerges that have as principles the guarantee of integral assistance, mainly for groups historically stigmatized (browne & nash, 2020). this scenario conflicts with the right to health guaranteed by the 1988 constitution, with the assumptions of the sus and with all other democratic provisions and respect for gender diversity (carvalho & carvalho, 2019). thus, it becomes necessary to discuss the health issues of the trans population, in order to reaffirm the importance and the existence of these dissent from the cis-heteronormative matrix, understood as a set of exclusive practices and discourses based on compulsory heterosexuality coupled with the presupposition of that bodies must follow a sexgender-sexuality linearity, that is, not a full and immobile structure, but an ordering discourse that ends up hierarchizing subjects, practices and cultures as more or less legitimate within a social spectrum which also ends up composing the subjectivity possibilities of the subjects, where they end up having to negotiate their identities within these hierarchical notions (galindo et al., 2017). objective it is during this political, historical, and social scenario that the speeches that will be analyzed in this investigative work emerged. therefore, the objective of this article is to present and discuss a narrative inquiry on trans experiences about their health. ihtp, 2(3), 286-297, 2022 cc by-nc-nd 4.0 issn 2563-9269 288 methods the research proposed in this article uses the experiences narrated by a participant of the research conducted within the scope of the instituto rené rachou of fundação oswaldo cruz about violences against the lgbtqia+ population in a brazilian metropolis, which was approved by the research ethics committee of the instituto rené rachou of fundação oswaldo cruz under the number caae 63857317.6.0000.5091 and has an approval opinion no. 1,925,485. the report of one of the participants caused a lot of reflections because it is crossed by specific aspects of trans health in brazil. he, indicated here as a pseudonym paul, is a person who was assigned female at birth, in a city in the interior of the state of minas gerais, brazil. when narrating his story, paul mentions that it was in adolescence that he began to understand that he was different from other people, understanding himself as a lesbian in high school and, with the move to the state capital, belo horizonte, he had contact with other performativities and came to understand himself as a trans person. performativity is a judith butler’s (r) concept that indicates the subject, its gender, and even the sexed body itself come into being through reiterating or parodying preexisting norms and discourses of power. the beginning of the transgender journey coincided with the entry into higher education. the interview was carried out in a place chosen by paul, being recorded, and transcribed for later analysis. to aid the analysis, the transitivity system proposed by halliday & hassan (1985) was used. through the scheme of figure 1, we can apprehend meanings of the experiences of people participating in the research about the world, about their actions and especially about their constructions of truth networks about violence and coping strategies. according to this theoretical-methodological approach, processes are terms, in general verbs, that express action, state or idea practiced by the oral subject. other terms are associated with these processes to characterize, modify, or re-signify them, which are called modalizers, and may be adjectives, adverbs, or other words that play such a role. it is also possible to separate some processes because of their similarity, such as relational, behavioral, mental, verbal, existential or material, as shown in figure 1. the interviews were recorded, transcribed, and analyzed under the perspective of critical discourse analysis (adc), of british origin, developed and proposed by norman fairclough (ramalho & rezende, 2011). this perspective is inserted in the social theory of discourse (tsd), whose assumption is the existence of dialectical relations between discourses and social life, in which discourses build and constitute social relations and not only reflect them (ramalho & rezende, 2011). based on the critical-realistic posture, tsd assists research on the functioning of discourses in the establishment, maintenance and/or overcoming of problems built in the social sphere (halliday & hassan, 1985). results paul's life story and narrative highlighted the challenges for a trans person to guarantee the right to health and a dignified life in the brazilian social and health system. their statements, incorporated into the analyzes in the next topic of this article, show: i the importance of meeting and talking to other trans people who have already gone through the process, ii the pathologization of the trans condition as a requirement to access the health system, iii the lack of trained health professionals to meet trans demands. although it is customary to separate discussion and results, we chose to present them together, as the theoretical-methodological framework of the tsd advocates the semiotic inseparability between discourse and analysis, as has also been done in other articles (narley, 2022; loureiro & resende, 2021; asante, 2020). discussion in brazil, access to services and health care, even though it is a constitutional right, is characterized, in large part, by long waiting lines for care, lack of information, lack of professionals and dehumanized care (rocon et al., 2019). for the trans population these difficulties take on an even greater magnitude in view of the inadequate care that this group receives and the embarrassing situations they are subjected to, for example, the rejection of the preferred name ihtp, 2(3), 286-297, 2022 cc by-nc-nd 4.0 issn 2563-9269 289 by health professionals (carvalho & chazan, 2019; brasil, 2019). paul, when reporting the search for health services that would help the start of hormone therapy the main objective of this process is to suppress endogenous hormones and replace them with others that are consistent with the preferred gender – he uses terms that express attitudes towards its own statement, indicating processes of subjectification in relation to what is said: of duty (having to), indicating an obligation in the process of seeking professionals qualified for their demand; of time, combined with material processes (already went and had already seen), demonstrating that the action taken by paul was preceded by other similar acts; intensity, associated with an attribute (very complicated), in order to characterize the search for a professional gynecologist who adequately treats trans men: (...) i had to look for professionals to start my hormones. i was lucky because i talked to other trans men before and they gave me the names of doctors who serve trans people, i arrived at a doctor i knew, i didn't look at a list and chose a name, i already went to a professional who had already seen trans people before, because if i need a gynecologist, it's very complicated. (paul) the use of terms, mostly material, indicates certain conditions necessary for health care to be provided for this population group, with a value of luck, justified by the material process talk, whose interlocutors are other trans men and the goal, the names of doctors. the discourse laden with barriers, perceived in paul, is the reflection of a complex process experienced by trans people who seek care in health services in brazil and in other countries. in a survey that aimed to identify studies that addressed the access of trans people to health services, it was identified that there are symbolic and organizational barriers in the field (carvalho & chazan, 2019). however, technical barriers are the most perceived, like what emerged in paul's discourse, in which there is a complicating factor in the search for professionals who understand and meet their specificities during the harmonization process. (...) i went to a psychiatrist and there is this issue, that you need a psychiatric report to start anything you are going to do, like a hormone or surgery, which already enters another type of violence: you get a certificate saying that you are mentally ill and i went into the psychiatrist's office pretty afraid because you have to talk, you have to convince the professional that you are a trans man and if i don't fit in all masculine patterns, because there are trans men who don't like these masculine patterns or trans women who don't like feminine patterns very much and then for the psychiatrist to recognize you for the gender you are, you have to fit in those patterns, if you get out of those standards, he may not understand that you are trans (paul) the material process starting and its generalized phenomenon anything is only made possible by the psychiatric report that categorically affirms the existential process you are a mental patient, that is, that the existing trans not healthy. paul classifies this situation as violence and modifies it with the term another, indicating that it is not the only violence that trans people experience in this journey through the desired body changes. until 2019, people who did not identify with the sex assigned to them at birth were considered mentally ill by the main medical diagnostic manuals. however, in may of the same year, the world health organization (who) made official, during the world health assembly, the removal of transsexuality from the international classification of diseases and health problems (icd). in january 2020, the federal council of medicine (cfm) made resolution no. 2,265 available, which provides for the expansion of access to care in the public health system and establishes greater security in the performance of procedures with hormone therapy and gender-affirming surgeries (coacci, 2019). it is important to reaffirm that depatologization should not be understood to generate disassistance to this population, and that they should be assured of the care and rights in health (rocon et al., 2016). such an achievement is considered an advance in the path of depatologizing gender identity, however, in the social imaginary and, above all, in the conduct of some health professionals, the existence of gender diversity is still seen as a psychopathological disorder. entering the office is also marked by behavioral processes the journey is made with fear, modeled by the intensity of the term pretty afraid and, during the consultation, the fit, together with the sense of obligation (having to), conforms this enunciative scene in which patient and professional perform their ihtp, 2(3), 286-297, 2022 cc by-nc-nd 4.0 issn 2563-9269 290 knowledge. according to paul, it is up to the trans person to convince, to sell their gender expression, so that the holder of the psychiatric knowledge-power performs a mental process, that is, his inner world, so that he experiences the phenomenon in a similar way to the patient. a match between phenomena is required. if not, there may be an existential process of denial (you are not trans) conditioned by the professional's mental process (he may not understand): (...) i had to go into the office like: 'please give me a report attesting that i am mentally ill', it was practically that, and then as this psychiatrist already understood about it and he even talked to me that he does not agree with the pathologization of transsexuality and he knows that the report is a bureaucratic thing, but that it is still necessary. so, he gave me the report and, at the first consultation, i didn't even have to go there because there are some professionals who want to do a follow-up of i don't know how many months ... before my hormones, i had this thing of living these humiliations all days, so i was dying to start hormones. and i was lucky to get this quick report (...), i scheduled the endocrinologist [and] i went to a professional who had already seen other friends of mine. (paul) the report regulates the existence of the trans person, since it delimits which, existential processes will or will not be legitimized. i am mentally ill becoming, in this context, synonymous with i am trans and luck appears iteratively in this enunciative scene, by attributing an aspect in the relationship between professional and user. the modalization (already, until) returns to highlight how the psychiatrist's mental processes are important for the conditions and possibilities of the participant's existence. when the professional doesn’t understand this, there is yet another complicating factor: monitoring of i don’t know how many months. this affirmation attributes to the material process of accompanying a modalization of time that tends to the infinite, impacting the mental process to die to start the hormone. the barriers identified during the hormonalization process were also perceived in a survey conducted with trans people in a metropolitan region of brazil. in this study, some interviewees reported that, when perceiving the barriers imposed by health services and professionals, they decided, even at risk of life, to resort to the use of hormones without monitoring by health professionals (sousa, rocha & barros, 2018). the participant says he experiences these humiliations every day, referring to the discriminatory acts that affect the trans population. this type of discrimination occurs in different contexts such as in the family, school, and professional environment, culminating in physical and, above all, emotional violence. in addition, disrespect to the preferred name, school dropout reflecting the trans person's non-acceptance at school and unemployment, increase the vulnerabilities and violence that affect this group (brasil, 2013). experiencing a gender identity outside heteronormativity makes the individual vulnerable and susceptible to discrimination, hostilities and inferiority, also called transphobia, that is, “prejudice and / or discrimination based on the gender identity of transsexual or transvestite people” (soares, 2018). prejudices that violate the rights of the trans person reiterate the heteronormative logic, which dictates the patterns of behavior to be followed by men and women, compulsorily reproducing the pattern of heterosexual alignment between body-gendersexuality (costa & dell'aglio, 2009). having a network of relationships, it seems, is more important than having access to health services, because, as paul indicates, this “sub-system” of care for trans people is formed by the exchange of information about which professionals are receptive to the demands of hormonization and documentation necessary for the transformation of the body: (...) what happens is that we have a network of trans people and we change these names, we have a list of doctors that we say are trans friendly and there are very few professionals, endocrinologists who i know there are three, who attend most trans people here, and this is when the person is able to pay or a private individual or has a health plan. (paul) after all, it is the relational processes that allow the construction of a strategic network to face the difficulties in the transgender journey: having a network, having a list of doctors, being able to pay. the modality of the quantity very few denotes another difficulty, in addition to the necessary ihtp, 2(3), 286-297, 2022 cc by-nc-nd 4.0 issn 2563-9269 291 financial capacity to afford the treatment. in a similar survey, the support network and the availability of quality public services are considered protective factors for the group of transvestites and trans who, in addition to these, have friendships as one of the main components of the network (brasil, 2017). and the brazilian public health system which, among other characteristics, is recognized for its universality and gratuity how does it care for and care for trans people? according to paul: when a person needs to go to sus, it is very complicated because he will be attended by a professional who he does not even know who will be and who may not understand, and he will wait months for an appointment that the guy will get there and say 'no , i will not give you a hormone' because you may not understand about it and we are talking about the most basic thing that is hormonization, because when it comes to the issue of surgery [laughs], it is much more complicated because it is a process that will change your life. so, the professionals who do mastectomy for trans men, which is different from a gynecomastia, which is in cis men, or a mastectomy for cis women, it is very different for you to do the process. so, if a professional does not have a knowledge of this, the result will not be good. (paul) currently in brazil, the set of clinical and surgical procedures performed for the purpose of sexual reassignment, or the transgender process does not have mandatory coverage by the private health care plan operators (romano, 2008). therefore, it is even more important that the state guarantees this right. seeking free and universal care in sus is both modalized and attributed by an adjective in an absolute superlative synthetic degree extremely complicated. its use summarizes all possible difficulties: the lack of understanding by professionals (he may not understand), the delay in the process (will wait months), the denial of treatment thanks to the idealization of gender of those who attend and the gender desire of those who are served (i will not give you a hormone), the gap in training for the surgeries mentioned (will not be a good result). in sus, the experience starts very complicated by something that is considered basic hormonization and ends much more complicated, with body modification surgery. the rupture in the narrative of difficulties appears with laughter, which resembles incredulity more than comicality in the face of the painful process of trans people in the health system. the difficulties imposed in the context of health care for the trans person may be the effect of unpreparedness or even disrespect from workers. fact that may imply abandonment of health treatment and the resistance of the trans person to seek the service when they need care (benevides & nogueira, 2020). the following report, although long, reiterates some of the difficulties and constraints experienced by those seeking attention and care in health services: (...) several friends of mine who have gone through very embarrassing situations, that the person is really transphobic and humiliating you there inside the office. and then, we don't feel safe even in a doctor's office (...) if i have a sore throat and need to go to the hospital, i know i will undergo some humiliation, if i need to have an exam anyone and anyone calling my name out loud in a room full of people, i will go through a humiliation. i went to book an exam and said 'look, i want you to put my preferred name in the observation to be treated by my preferred name' and the woman says 'it's okay'. two hours later, another person calls confirming my exam and calling me by my registration name, and i say 'i asked to put my preferred name on the note, can you please put it there?'. and then i get there, on the day of the exam, and say 'look, i want you to call me by my preferred name' and have no way, in the system, for this to be done. on that day, the sector coordinator explained to the doctor that she was going to see me and i was going to have a mammogram, for my surgery, and then you enter an area that is only female, that has a lot of women sitting next to you to have a mammogram and you sit there, and the person calls you and it's an embarrassment because everyone says 'what is this guy doing here?' then you will be exposed [on mammography], because i still had breasts and i had a huge dysphoria with breasts, (...) if the person is not prepared, they may be scared (...) so there are "n" constraints that happen. (paul) the difficulties in accessing this health service explain the saga of constraints experienced by trans people. the marking of the mental process i know demonstrates how the experimenter prepares for the phenomenon discrimination and misunderstanding ihtp, 2(3), 286-297, 2022 cc by-nc-nd 4.0 issn 2563-9269 292 seem to be inherent in the social relationships in which the body is being object of intervention. not feeling safe is another mental process, negatively modeled by even, denoting that there is no guarantee of dignity to trans life, since the office can be understood as a space of intimacy, of health care, but not for trans people. the path in the laboratory for scheduling and conducting an exam, the insistence on legitimizing the preferred name, the inadequacy of information systems that respond to this social demand and the expectation of a professional training that does not contemplate trans health are summarized in the index n constraints, pointing out that there is more. not feeling safe may also be the result of processes that violate the rights of the trans person that occur daily. in 2019, 124 trans were murdered in brazil, this group being the most victimized by situations involving violence against dissident bodies (grade, gross & ubessi, 2019) experiencing constant constraints causes different feelings, especially fear in the face of unpredictable situations, as reported below: (...) after i started my transition, i haven't been to the gynecologist yet for fear, it's a necessary thing, i need [laughs] to go at least to do standard procedures to see how my body is doing and most trans men don't go because of this fear that you have to go to the gynecologist who only has a woman waiting and the person who will attend you, will look at you and say 'wow, but you have a vagina, how come, you are a man!'. (paul) the material process of going to the gynecologist is restricted by the mental process of being afraid. another interesting point is that, before the transition, female performance was more prevalent mainly because of the body, and this prevented her movement in public spaces out of fear. after the transition, with a predominance of male performances, there are still off-limit spaces for the same fear of causing embarrassment in relation to be idealized images of man / woman. in a linear language between sex-gender-body, it is not permissible for men to have a vagina, so they do not need gynecological services, which excludes the multiplicity of bodies: changing is, static and ideal, for and, multiple and inclusive, it better represents the crossings of social markers today. paul is understood as male and bisexual and with a vagina and has the right to do so. it is necessary that society embraces the modes of existence and subjectivities of trans people. one way that points to overcoming this problem is the expansion of dialogue and discussions about the theme at home, in the school space, in the work environment and in all other spaces of social coexistence (sousa, 2019). one of the barriers to health care is the lack of technical knowledge of health professionals and teams, limited access to health plans, poor quality of care and insufficient research on the health of the population itself. lack of knowledge can lead to prejudice, however, the increase in technical education alone does not have the power to reduce prejudice alone. a predisposition for cultural and attitudinal changes is required (sousa & iriat, 2018). on the other hand, both the medical research agenda and the classification of surgeries, specific attributes of medical professionals, make trans life difficult: (...) all the procedures that we have to go through, mastectomy, for example, it is not recognized as a necessary surgery for our body, it is still recognized as cosmetic surgery, so the plan [health] does not cover. reassignment surgery too. in the world, it is not a surgery that is very advanced, that has good results and that are functional. here in brazil, even less (...) the results i see are terrible. i wouldn't do (...) surgery for trans women even has some references and that already has great results but for trans men it is really long overdue, because people really have no interest in doing research in these specific areas. (paul) in addition, paul uses a comparative relational process (to suffer more prejudice) to locate two identifiers, trans men and trans women, with respect to violence. currently, epidemiological information and research in relation to the health of trans men are scarce, because of this the technological development of surgical practices that guarantee the efficacy of gender-affirming surgeries becomes more complex (rodovalho, 2017). it is known that surgeries for trans men (phalloplasty) are still very ihtp, 2(3), 286-297, 2022 cc by-nc-nd 4.0 issn 2563-9269 293 "experimental", every day surgeons develop new techniques, due to the great complexity. genderaffirming surgeries for trans women is better known and better results are obtained because it is easier to define the anatomical structure of a penis in a vagina. as paul explained earlier, female performance is more subjugated and uses the concept of passability to justify in part. passability is a passing through, it is a reading of the world in relation to trans bodies. unfortunately, trans men are non-existent for society, due to their invisibility and subordination, when compared to the significant male lesbian and man. this relationship is perpetuated with passability, as the existential process involved results in comfort zone, which, in fact, is a place without violence, without oppression, something that should be guaranteed to all bodies. the pathologization of transgenderity, already mentioned, reappears in the speech of angela, being temporalized when affirming its attributes (is still a disease, it is still the scum of society). in addition, the participant seeks to escape the identity delimitation that restricts the power of being: she is still seen only as a travesti. the modal iteration by the terms still, only, never, if represents the various conditions that hinder transfeminine life, especially survival itself to continue to live for a few more decades is, for them, all the time. the transfeminine population suffers from invisibility, violence, vulnerability and stigma making it difficult for them to access education and, consequently, the labor market. thus, the achievement of formal work becomes a barrier for the trans population and, although there is no official data, it is estimated that 90% of brazilian trans and transvestite women have prostitution as their source of income (benevides & simpson, 2018). according to the national association of transvestites and transsexuals (antra), based in brazil, the life expectancy of the transvestite and female trans population in the country is on average 35 years of age, while the life expectancy of the brazilian population in general is 74 years old. this type of age gap reveals the vulnerability to which the trans population, especially the transvestite and female trans, are exposed (parker, 2003). the mental process of perceiving, of seeing dissident bodies from heteronormativity establishing asymmetric power relations with trans bodies is called: transphobia. its attributes corroborate with the other arguments presented here: daily, normal, relativized. the oppressions identified in the lgbt environment are shaped by hegemonic male and female patterns. such experiences of stigmatization, experienced by trans people, are socially constructed processes of devaluation of identities that give rise to relations of power and discrimination (cunha, 2016). in the acronym lgbt "lgb" (lesbian, gay and bisexual) it refers to sexual orientation, while the "t" (transvestites and trans) refers to gender identity; however, even within the lgbt group, trans and transvestites are stigmatized for fleeing heteronormative behavior and transgressing within the expected norms of gender and sexuality (cunha, 2016). the reason for this is supported by a model of society that legitimizes behaviors based on their biological sex and what escapes from the gendered, culturally legitimized and naturalized conceptions is subjugated (radix, 2019). final considerations this article aimed to understand some specific aspects related to the trans people health such as access to the gender-affirming process, relationship with health professionals and passability. we started from an inquiry with paul who had, in their daily life, many demands related to trans health, so that we can outline and understand in depth the discursivities associated with trans life. the conviction about gender identity appears strongly in the relations with health professionals, friends and other subjects inserted in everyday scenes. making yourself recognized as a man or woman to access rights is still a constant in the lives of trans people. in brazil, passability thus appears as a passport for less regulated and more fully-fledged citizenship. it is possible to build some global implications for the results shown here, such as the need to institutionally establish in the sus health care the figure of trans professionals or, at least, professionals trained in service to care the trans demand in health; the urgency of implementing other care protocols that prioritize the well-being of the trans person rather than their pathologization; and the ihtp, 2(3), 286-297, 2022 cc by-nc-nd 4.0 issn 2563-9269 294 consideration of passability as a social determinant of health, especially for trans and non-binary people. finally, this study enabled the punctuation of aspects necessary for further development by health institutions regarding respect for diversity in health care. in addition, this research produced evidence that demonstrates the susceptibility attributed to the health of trans people because of the human rights violations. with this, it is considered the importance of building answers to the problems that permeate the trans people lives. the changes, too, should reflect in the training of health professionals, in order to produce responses to the lack of reception and scientific technical knowledge about the specifics of the trans health care. although the limitations of the study fall on the number of analyzed histories and the geographical scope, its potentialities are based on the depth of the discourses associated with the daily lives of trans people. references almeida, c. b., & vasconcellos, v. a. (2018). transgender: are they overcoming barriers of the job market in são paulo?. revista direito getúlio vargas, 14(2), 303-333. asante, g. a. (2020). anti-lgbt violence and the ambivalent (colonial) discourses of ghanaian pentecostalist-charismatic church leaders. howard journal of communications, 31(1), 20-34. benevides, b., & simpson, k. (2018). mapa dos assassinatos de travestis e transexuais no brasil em 2017 [(accessed on 24 july 2022)]. avaliable online: https://antrabrasil.files.wordpress.com/201 8/02/relatc3b3rio-mapa-dos-assassinatos2017-antra.pdf benevides, b. g., & nogueira, s. n. b. (2020). dossiê dos assassinatos e da violência contra travestis e transexuais brasileiras em 2019 [(accessed on 24 july 2022)]. avaliable online: https://antrabrasil.files.wordpress.com/202 1/01/dossie-trans-2021-29jan2021.pdf brasil. (2019). resolução nº 2.265 de janeiro de 2019 do conselho federal de medicina [(accessed on 24 july 2022)]. avaliable online: https://www.in.gov.br/web/dou//resolucao-n-2.265-de-20-de-setembro-de2019-237203294 brasil. (1988). constituição da república federativa do brasil. [(accessed on 24 july 2022)]. avaliable online: https://www.planalto.gov.br/ccivil_03/cons tituicao/constituicao.htm brasil. (1990) lei nº 8.080, de 19 de setembro de 1990. [(accessed on 24 july 2022)]. avaliable online: https://www.planalto.gov.br/ccivil_03/leis/ l8080.htm brasil. (2008b). portaria nº 1.707, de 18 de agosto de 2008 [(accessed on 24 july 2022)]. avaliable online: https://bvsms.saude.gov.br/bvs/saudelegis/ gm/2008/prt1707_18_08_2008.html brasil. (2008a). portaria nº 457, de 19 de agosto de 2008. [(accessed on 24 july 2022)]. avaliable online: https://bvsms.saude.gov.br/bvs/saudelegis/ sas/2008/prt0457_19_08_2008.html brasil. (2009). portaria nº 1.820, de 13 de agosto de 2009. [(accessed on 24 july 2022)]. avaliable online: https://bvsms.saude.gov.br/bvs/saudelegis/ gm/2009/prt1820_13_08_2009.html brasil. (2011). portaria nº 2.836, de 1º de dezembro de 2011 [(accessed on 24 july 2022)]. avaliable online: https://bvsms.saude.gov.br/bvs/saudelegis/ gm/2011/prt2836_01_12_2011.html brasil. (2013a). portaria nº 859, de 30 de junho de 2013 [(accessed on 24 july 2022)]. avaliable online: ihtp, 2(3), 286-297, 2022 cc by-nc-nd 4.0 issn 2563-9269 295 https://bvsms.saude.gov.br/bvs/saudelegis/ sas/2013/prt0859_30_07_2013.html brasil. (2013b). portaria nº 2.803, de 19 de novembro de 2013 [(accessed on 24 july 2022)]. avaliable online: https://bvsms.saude.gov.br/bvs/saudelegis/ gm/2013/prt2803_19_11_2013.html brasil. (2017). resolução normativa nº428 de 07 de novembro de 2017 [(accessed on 24 july 2022)]. avaliable online: https://bvs.saude.gov.br/bvs/saudelegis/an s/2017/res0428_08_11_2017.html browne, k., & nash, c. (2020). heteroactivism. lambada nordica, 25(1). carvalho, n. r., & carvalho, r. s. p. (2019). bolsonarismo e desdemocratização: o alerta nas conquistas de cidadania e consolidação democrática. anais do congresso brasileiro de processo coletivo e cidadania, 7, 224-245. carvalho, p. l. b., & chazan, a. c. s. (2019). o acesso das pessoas transexuais e travestis à atenção primária à saúde: uma revisão integrativa. revista brasileira de medicina de família e comunidade 14(41), 1795. coacci, t. (2019). como funciona a despatologização na prática?. revista estudos feministas, 27(2), e58001. costa, l. g., & dell'aglio, d. d. (2009). a rede de apoio social de jovens em situação de vulnerabilidade social. in libório, r. m. c., koller, s. h. (eds.). adolescência e juventude: risco e proteção na realidade brasileira. cunha, j. r. a. l. (2016). a reprodução do comportamento social heteronormativo dentro do meio homossexual: a marginalização dos lgbt com foco nos gays "afeminados". percursos, 2(1), 1-13. fairclough, n. (2001). discourse and social change. flick, u. (2018). designing qualitative research. galindo, d., cazeiro, f., lemos, l. s., & galvão, a. s. (2017). lgbts e gênero banidos? notas genealógicas sobre projetos de lei no brasil. psicologia em estudo, 22(2), 253-64. grade, c., gross, c. b., & ubessi, l. d. (2019). patologização da transexualidade a partir de uma revisão integrativa. psicologia, saúde & doenças, 20(2). halliday, m. a. k., & hasan, r. (1985). language, context, and text: aspects of language in a social-semiotic perspective. halliday, m. a. k., & mathiessen, c. (2004). an introduction to functional grammar. jesus, j. g., & alves, h. (2010). feminismo transgênero e movimento de mulheres transexuais. cronos, 11(2), 21-50. loureiro, c. d. f. r., & resende, v. (2021). la escalada de la violencia doméstica contra las mujeres durante la pandemia del covid-19 en el discurso de onu mujeres. signo y seña, (40). lima, c. v. t. (2018). as dificuldades do sus. conselho federal de medicina [(accessed on 24 july 2022)]. avaliable online: https://portal.cfm.org.br/index.php?option =com_content&view=article&id=27574:asdificuldades-do-sus&catid=46. nartey, m. (2022). marginality and otherness: the discursive construction of lgbt issues/people in the ghanaian news media. media, culture & society, 44(4), 785-801. minayo, m. c. s. (2001). pesquisa social. teoria, método e criatividade. naderifar, m., goli, h., & ghaljaie, f. (2017). snowball sampling: a purposeful method of sampling in qualitative research. strides in development of medical education, 14(3), 16. parker, r., & aggleton, p. (2003). hiv and aids-related stigma and discrimination: a conceptual framework and implications for action. social science medicine, 57, 13-24. petry, a. r., & meyer, d. e. (2011). transexualidade e heteronormatividade: algumas questões ihtp, 2(3), 286-297, 2022 cc by-nc-nd 4.0 issn 2563-9269 296 para a pesquisa. textos & contextos, 10(1), 193-198. radix, a. (2019). hormone therapy for transgender adults. urology clinic of north america., 46(4), 467-473. ramalho, v., &resende, v. m. (2011). análise de discurso (para-a) crítica: o texto como material de pesquisa. rocon, p. c., rodrigues, a., zamboni, j., & pedrini, m. d. (2016). dificuldades vividas por pessoas trans no acesso ao sistema único de saúde. ciência e saúde coletiva, 21(8), 2517-2526. rocon, p. c., sodré, f., rodrigues, a., barros, m. e. b., & wandekoken, k. d. (2019). desafios enfrentados por pessoas trans para acessar o processo transexualizador do sistema único de saúde. interface, 23, e180633. rocon, p. c., wandekoken, k. d., barros, m. e. b., duarte, m. j. o., & sodré, f. (2020). acesso à saúde pela população trans no brail: nas entrelinhas da revisão integrativa. trabalho, educação e saúde, 18(1):e0023469 rodovalho, a. m. (2017). cis by trans. revista estudos feministas, 25(1), 365-373. romano, v. f. (2008). as travestis no programa saúde da família da lapa. saúde e sociedade, 17(2), 211-219. silva g. w. s., souza e. f. l., sena r. c. f., moura i. b. l,. sobreira m. v. s., & miranda f. a. n. (2016). cases of violence involving transvestites and transsexuals in a northeastern brazilian city. revista gaúcha de enfermagem, 37(2):e56407. soares, l. s. (2018). cuidado em saúde e transfobia: percepções de travestis e transexuais de duas regiões do rio de janeiro: maré e cidade de deus, sobre os serviços de saúde [(accessed on 24 july 2022)]. avaliable online: https://www.arca.fiocruz.br/handle/icict/27 920 sousa, d., & iriart, j. (2018). “viver dignamente”: necessidades e demandas de saúde de homens trans em salvador, bahia, brasil. cadernos de saúde pública, 34(10), e00036318. sousa, j. a., rocha, t. m. a. c., & barros, c. r. s. prevalência de discriminação na vida, entre travestis, transexuais e transgêneros. cadernos gênero e diversidade, 4(1). sousa, j. a. (2019). universo das travestis, transexuais e transgêneros em estabelecimentos de saúde: construindo pontes entre discriminações e fatores associados [(accessed on 24 july 2022)]. avaliable online: https://bdtd.ibict.br/vufind/record/sant_4 07781881980baf52de7ba29221f57ed souza, c. n. (2015). the development of the modalized expression pode ser. a case of (inter)subjectification in portuguese. alfa: revista de linguística, 59(1), 29-58. viana, a. c. a., bertotti, b. m., gitirana, j. h. s., kreuz, l. r. c., & costa, t. c. (2020). pesquisa, gênero & diversidade: memórias do iii encontro de pesquisa por/de/sobre mulheres [(accessed on 24 july 2022)]. avaliable online: https://www.ithala.com.br/wpcontent/uploads/2020/04/ebook-pesquisagenero-e-diversidade-volume2.pdf#page=181. vinuto, j. (2014). a amostragem em bola de neve na pesquisa qualitativa: um debate em aberto. 2014. temáticas, 22(44), 203-220. ziegler, e., valaitis, r., yost, j., carter, n., & risdon, c. (2019). “primary care is primary care”: use of normalization process theory to explore the implementation of primary care services for transgender individuals in ontario. plos one, 14(4), e0215873. ihtp, 2(3), 286-297, 2022 cc by-nc-nd 4.0 issn 2563-9269 297 figure 1. types of transitivity system processes source: halliday & mathiessen, 2004, p. 58 ihtp, 2(3), 272-285, 2022 cc by-nc-nd 4.0 issn 2563-9269 272 examining the quality of life of patients living with breast cancer in southern sri lanka: a descriptive cross-sectional study eranthi weeratunga1, chandanie senadheera2, manjula hettiarachchi3, bilesha perera4 1department of nursing, faculty of allied health sciences, university of ruhuna, galle, sri lanka; 2department of psychiatry, faculty of medicine, university of ruhuna, galle, sri lanka; 3nuclear medicine unit, faculty of medicine, university of ruhuna, galle, sri lanka; 4department of community medicine, faculty of medicine, university of ruhuna, galle, sri lanka corresponding author: e. weeratunga (eranthiw@ahs.ruh.ac.lk) abstract introduction: globally breast cancer (bc) is the most common cancer among women and sri lanka is not an exception. cancer influences the quality of life (qol) of cancer patients. the survival rates and the qol of bc patients have improved significantly over the last few decades. however, factors associated with the qol of patients with bc have not been well studied in sri lanka. the aim of the study was to assess the qol and its correlates among patients with bc treated at a tertiary care hospital in southern sri lanka. methods: ninety-seven bc patients were investigated using an interviewer-administered questionnaire. the world health organizationquality of lifebrief (whoqol-bref) was used to measure qol. the whoqol-bref measure qol in four domains: physical, psychological, social, and environmental. scores range from 0 to 100, and higher scores indicate a greater qol. results: the mean age of the sample subjects was 52 years (sd = 8.7), and the majority were married (78%). physical (60.97±11.56), psychological (63.52±11.63), and environmental (69.05 ±8.79) domains of qol were at a satisfactory level whereas qol score related to social relationships was found to be low (47.86±13.89) in this sample. physical qol was higher in young participants and psychological qol was higher among those with a fewer number of comorbidities and disabilities and those with no body image changes. social qol was higher among married and environmental qol was higher among those who reported having no disabilities. conclusion: social support in the form of family support and emotional support seems to play a major role in lowering the qol of bc patients. psychosocial support services should target patients experiencing physical disabilities, a higher number of comorbidities, and those who were subjected to changes in their body image. keywords breast cancer; developing countries; support services; quality of life introduction cancer is a global health problem. breast cancer (bc) ranks first among cancers experienced by women (globocan/world, 2020). but it can have a good prognosis if it is diagnosed in its early stages (handbook/brest cancer, 2021, pp.1-6). basically, abnormal uncontrollable growth of a group of cells in the glands or ducts will result in breast cancer. being a female is the most vital risk factor for being a breast cancer patient. other risk factors include advanced age, exposure to a chemical (e.g., benzene) or a physical agent (e.g., radiation), a defective gene, or an impact of hormones (handbook/brest cancer, 2021, pp. 1-6). in 2020, globally there were 11.7% (2,261,419) bc patients out of the total cancer patients and 6.9% ihtp, 2(3), 272-285, 2022 cc by-nc-nd 4.0 issn 2563-9269 273 (684, 996) deaths were from bc patients out of all cancer deaths. globally the incidence of bc was 47.8/per 100,000 women per year with a mortality rate of 13.6/per 100,000, which is the highest incidence recorded in different types of cancer and ranks second in mortality rates (globocan/world, 2020). bc trends in sri lanka are like that of developed countries and bc was the leading type of cancer in sri lankan women according to the national cancer control programme data (nccp) (2020); it ranks the first in new cases 3,975 (13.4%) and several deaths 1,682 (10.1%) (globocan/sri lanka, 2020). the incidence of bc in sri lanka was 27.3/per 100,000 women per year with a mortality rate of 11/per 100,000, which is lower than the global rates. according to the nccp/sri lanka, the agestandardized incidence rate of bc was 18.4/100,00 in the year 2005 and it has risen to 33.5/100,000 in the year 2019 (nccp, 2020; national cancer incidence and mortality data, 2015). according to published data from national cancer institute in sri lanka from 2016 to 2019, a higher percentage of women who were in the age range of 50-59 were diagnosed with bc (28.2%) (seneviratne, 2020). health-related quality of life was defined as patients’ perception of their physical, mental, and social health that is influenced by diagnosis, treatment, post-treatment, and survivorship (mokhatri-hesari & montazeri, 2020). the qol is concerned as an important indicator in the treatment outcome of patients with cancer. improvement of qol has been identified as one of the goals in healthcare for people living with bc. bc patients tend to live longer today than in the past and their concerns about qol have increased (cui, wang & wang, 2021; edib et al., 2016; yusoff et al., 2022). in recent years, there has been an increasing trend of reporting qol in bc research (cui, wang & wang, 2021; edib et al., 2016; finck et al., 2018; yusoff et al., 2022). qol of bc patients has improved in recent years due to the advancement in treatment and psychological interventions (mokhatri-hesari & montazeri, 2020). cancer and its treatments frequently cause physical and mental disorders in patients. the leading problems of cancer patients are stress, depressive symptoms, anxiety, hopelessness, fear, sadness, and aggression (alagazy, soltan & soliman, 2020; dehghan et al., 2020; handbook/brest cancer, 2021, p.1-6; prabath & ruban, 2020; weeratunga, senadheera & ekanayake, 2016; weeratunga et al., 2019; weeratunga et al., 2021; yan, chen & li, 2019; yuan, pan & wang, 2020). not only cancer, its related factors such as social activities, different coping strategies (finck et al., 2018; weeratunga et al. 2022), work, and childcare also affect the qol (yusoff et al., 2022). qol contains all aspects of life experiences, illnesses, and treatment. the qol of bc patients changes over time and the poor qol of chronic patients is the consequence of different physical and psychological problems they must face during their treatment and recovery period (dehghan et al., 2020; yusoff et al., 2022). there are several factors such as sociodemographic, clinical, treatment-related, behavioural, and psycho-social that individually or collectively impact the qol of cancer patients. women with bc experience physical (e.g. – disabilities, fatigue, body image, loss of hair, loss of a breast, dyspnea, etc.), psychological (e.g.-perceived stress, mindfulness, depressive symptoms, etc.), social problems (e.g. – age, family support, work, childcare, education level, marital status, income, social support, coping, optimism, etc.), and cancerrelated factors (e.g.treatment types, comorbidities, cancer types, cancer stage, etc.) that can lead to a decrease in their qol (adamowic & waliszewska, 2020; cui, wang & wang, 2021; edib et al., 2016; shin et al., 2017; tang et al., 2017; yeo et al., 2020; yusoff et al., 2022). understanding the factors that affect the qol of women with bc is important for the development of strategists to improve outcomes. study purpose few studies have been conducted to measure the outcomes of cancer care in sri lanka (jayasekara, rajapaksha & aaronson, 2009; jayasekara, rajapaksha & brandberg, 2008; weeratunga, senadheera & ekanayake, 2016; weeratunga et al., 2019; weeratunga et al., 2021; weeratunga et al., 2022). cancer care resource limitations, increasing cost of treatments, and inadequate psychological facilities available for the high demand have adversely affected cancer care management system in the country creating adversities for cancer patients (national cancer incidence and mortality data sri ihtp, 2(3), 272-285, 2022 cc by-nc-nd 4.0 issn 2563-9269 274 lanka, 2015; jayasekara, rajapaksha & brandberg, 2008). the purpose of this study was to assess the qol and its correlates among bc patients who had obtained treatment from the teaching hospital, karapitiya (thk), galle in southern sri lanka. methods study design and participants this cross-sectional study was conducted at the cancer unit, thk in sri lanka. the thk is the only teaching hospital in southern sri lanka and provides health services using many specialties including oncology. ninety-seven out of 400 cancer patients were breast cancer and were assessed for their qol. bc patients were selected for the study because they satisfy the following conditions: having confirmed diagnoses as a bc patient; being able to understand the sinhala language and being able to provide informed consent with sufficient physical and mental stability. subjects with any surgical problems other than cancer-related and in a critical state/end-stage of medical condition were excluded. instruments an interviewer-administered questionnaire (iaq) was used to obtain socio-demographic characteristics of the participants such as age, gender, educational level, and marital status. the whoqol-bref was also included in the iaq. the iaq questions were close ended; after preparing this iaq, pre-testing was done using ten bc patients who were excluded from the final analysis. the world health organization – quality of life bref questionnaire (whoqolbref) was used to assess the qol. this is a 26-item scale comprised of four domains of self-perceived qol (whoqol, 1988). twenty-four items of the scale were used to measure physical qol (7 items), psychological qol (6 items), social qol (3 items), and environmental qol (8 items). two other items were used to measure overall qol and overall satisfaction with health (agnihotri et al. 2010). each item has five responses that were rated on a likert scale of 1-5. higher scores indicate a higher level of self-perceived qol. the scale has been validated in sri lanka and has been used in health research (kumarapeli, seneviratne & wijeyaratne, 2006; kumarapeli, seneviratne & wijeyaratne, 2011). data collection data collection was done using an iaq, bed head tickets, and the diagnosis cards of the corresponding participants. the participants were enrolled in the cancer unit at the thk during the year 2017-2018. eligible participants were identified using medical records and were recruited using a ‘first-come-firstserve basis’. on the day of the data collection, the pi contacted them to explain the aim of the study, and those who had given consent were surveyed after obtaining written informed consent. to maintain confidentiality, each participant was offered a code known only to the pi. the questionnaire took approximately 10-15 minutes to complete. data analysis data analysis was done using the statistical package of social science (version 20.0). frequency distributions and basic descriptive statistics were used to describe the study sample. an independent ttest and one-way anova were used as appropriate to establish the differences in qol scores across sociodemographic and clinical characteristics. the level of statistically significant was set at p < 0.05. ethical considerations ethical approval for the study was obtained from the ethics review committee, faculty of medicine, university of ruhuna, galle, sri lanka. in addition, permission was obtained from the director of thk and relevant consultants in the cancer unit. before the data collection, we informed the participants about the study purpose, the risks, and benefits of participating in this research, the principles of voluntary participation, and their right to withdraw or refuse to participate in the study at any time without any penalties. they were also informed that the data collected would be used for research purposes only. written informed consent from all participants were obtained before the interviews. results sociodemographic and clinical characteristics of study participants ihtp, 2(3), 272-285, 2022 cc by-nc-nd 4.0 issn 2563-9269 275 our study sample consisted of 97 women with breast cancer, and the mean age was 52.39± 8.72 years (range 31-71 years). most of the patients were married (78%), studied up to advanced level examination (82%), and unemployed (62%). a summary of the participants’ socio-demographic and clinical characteristics is provided in table 1. nearly 84% of patients had local cancer at the time of the diagnosis (t stage – localized tumor) and 16% were in the severe stage (node and metastasis). fiftyseven patients (59%) had been diagnosed in the previous 12 months; others were diagnosed for more than 1 year period at the time of data collection. descriptive statistics of different domains of qol the total scores and sub-scale/domain scores of qol are given in table 2. physical, psychological, and environmental qol was at a moderate level whereas low qol was found to be in the social relationship domain (47.86±13.89). overall, a moderate level of qol was observed in this sample. correlates of participants’ qol associations between socio-demographic and other clinical characteristics and qol domains are presented in table 3. age, marital status, past medical/surgical history (comorbidities), selfreported disabilities, and body image changes due to the cancer or cancer treatment seem to influence several qol domains as shown in table 3. the level of income, time since diagnosis, stage of cancer, and current treatment were not related to the qol of the participants. physical qol was significantly higher among bc patients in advanced age than that of others. psychological qol was significantly higher among patients who had past surgical history, who had no self-reported disabilities, and who had not experienced any body changes due to cancer or treatment. married bc patients had significantly higher social qol. further, environmental qol was higher among those patients who had no selfreported disabilities compared to others. a moderate level of total qol was observed across all categories of bc patients. discussion in the present study, we investigated the qol and its correlates in patients with bc in sri lanka. the participants, in general, had a moderate level of total qol. advanced age, unmarried status, having a history of medical/surgical comorbidities, having changes in body image due to cancer or treatment (e.g.loss of breast and hair, scars on the body, lymphoedema, skin, and weight changes), and having disabilities were found to be the risk factors of having low qol in bc patients. there were no population norms to analyze the total score of whoqol-bref. also, different studies have used different qol measures to assess the qol of bc patients globally. comparisons are made difficult due to these reasons, but studies conducted in other countries have suggested similar or contradictory findings. a moderate level of total qol was reported in some countries such as iran and india as observed in the current study (kiadaliri, bastani & ibrahimipour, 2012; muthanna, khairkar & hurtig, 2017). bc patients in some countries like canada, saudi arabia, pakistan, korea, and malaysia had reported higher total qol (arneja & brooks, 2021; imran et al., 2019; muthanna et al., 2021; park j-h et al., 2021; yusoff et al., 2022) whereas a lower level of total qol was found among certain bc patients in china and colombia (ban et al., 2021; cui, wang & wang, 2021; finck et al., 2018). in our study, the observed low level of social qol has greatly contributed to lowering the total qol to a moderate level. according to the study findings, a high total qol was reported by the younger age group (≤ 50 years) and our result is consistent with some studies done in malaysia, saud arabia, korea, and china (edib et al, 2016; imaran et al., 2019; park j-h et al. 2021; yan et al., 2016; yusoff et al., 2022). further, bc patients who were married (ban et al., 2021; cui, wang & wang, 2021; muthanna, khairkar & hurtig, 2017; yusoff et al., 2022) and patients with tumor stage (ban et al., 2021; edib et al., 2016; muthanna, khairkar & hurtig, 2017, park j-h et al., 2021; yusoff et al., 2022) had shown a higher total qol than their counter partners. younger age was found to be a protective factor of having a low qol and this could be due to higher physical strength, less physical complaints, physical flexibility, and speedy recovery in patients in this ihtp, 2(3), 272-285, 2022 cc by-nc-nd 4.0 issn 2563-9269 276 group. a larger capacity for recovery at a younger age may need less time for adjustment to the disease whereas older adults may need more time for the adjustment to the disease and recovery (edib et al., 2016; park j-h et al., 2021; yusoff et al., 2022). however, few studies conducted in india and in malaysia showed that bc patients at younger ages tend to have a lower qol (muthanna, khairkar & hurtig, 2017; yusoff et al., 2022). better emotional and social functioning were reported by 50 years of age and older group than the younger patients in a study conducted in saudi arabia (imran et al., 2019). a study conducted in iran found that young age is a risk factor for bc patients who had poor hrqol than the older age group (kiadaliri, bastani & ibrahimipour, 2012). lower adjustment, unbearable treatment, less coping, and experience of severe distress in younger bc patients and better social and emotional functioning in older adults seemed to cause an enhanced qol among older adults than in the younger age group. married bc patients had significantly higher social qol in this study as has been reported in some other countries (muthanna, khairkar & hurtig, 2017). similarly, psychological, and environmental qol were high in married bc patients than in unmarried bc patients possibly due to the strong relationship that they have with their partners in accordance with the culture and traditions of sri lanka. physical qol was lower among married bc patients as some of them were in older ages and were on treatments, and had comorbidities, self-reported disability, and body image changes due to cancer or treatment. but in some studies, conducted in china and malaysia, no significant association was reported between marital status and domains of qol (cui, wang & wang, 2021; yusoff et al., 2022). married bc persons were reported to have lower qol in a study conducted in iran (kiadaliri, bastani & ibrahimipour, 2012) probably due to the role changes and performances of women in a family. partner relationships and sexual dysfunctions have an influence on qol scores (kiadaliri, bastani & ibrahimipour, 2012) in bc patients. patients who had many unmarried children in their families seemed to be affected more (cui, wang & wang, 2021). in contrast to our findings, unmarried bc patients reported significantly higher qol than married and divorced patients in malaysia (edib et al., 2016) and in china (tang et al., 2017). both who had medical and surgical comorbidities (past medical/surgical history) were found to be having lower psychological qol. long-term comorbidities and cancer itself affect psychological well-being and would result in lower qol. research conducted in iran and the united states (us) showed that comorbid conditions can have a negative impact on the qol (kiadaliri, bastani & ibrahimipour, 2012; park j et al., 2021; wu, davis & chen, 2019). in a us study, having more comorbid conditions increase pain and reduce sleep quality, lesser physical and role functioning, and worse fatigue, dyspnea, appetite loss, and nausea and vomiting (wu, davis & chen, 2019). bc patients who did not have any self-reported disabilities were found to have a better psychological and environmental qol as assumed. physical and social qol also was higher among non-disabled as expected. if patients had any disabilities, they had to face difficulties when doing daily activities. further, other relationship issues caused social isolation and having to depend on others. finally, all changes could be impacted psychologically. these reasons may affect adversely and tend to reduce qol in all domains. body image changes due to cancer or treatment (e.g.loss of a breast, loss of hair, scars on the body, lymphoedema, skin, and weight changes) affect in a similar way to that of self-reported disabilities and showed a significant impact on psychological qol. patients who did not have any body image changes scored higher values for all qol domains as expected. due to cancer, surgical interventions, treatment modalities, side effects, and disabilities, body changes or alterations could occur in the body. women who received chemotherapy described greater physical and sexual difficulties than that of other bc patients in some selected european countries (ruggeri et al., 2019). in a review study, surgery type, disease process, and treatment type interfered with the body image/physical appearance of bc patients causing distress among them (rezaei et al., 2016). body image changes in ghana bc participants included hair loss, absence of the breast that was problematic by the inaccessibility of breast prosthesis, the incidence of lymphoedema, and skin changes (iddrisu, aziato & dedey, 2020). ihtp, 2(3), 272-285, 2022 cc by-nc-nd 4.0 issn 2563-9269 277 none of the other socio-demographic and clinical variables (income level, cancer stage, time since diagnosis, and current treatment) were significantly correlated with the scores of qol. although the income level was not significant, lower qol scores in all domains among bc patients who earned low income were observed in this study. bc patients who did not have a proper way of income suffer from all needs of them, and their family’s needs. this situation would impact their qol. if patients had a permanent income, qol could be improved in many ways. as consistent with current findings, women who had lower income reported lower total qol than the highincome group in malaysia (edib et al., 2016). although we did not investigate employment status which is directly related to income, employment was not significantly associated with qol domains in a study conducted among bc patients in iran (kiadaliri, bastani & ibrahimipour, 2012) whereas a significant higher qol by the confirmed/wellorganized/government or private job holders was reported in china (yan et al., 2016). unemployed and retired bc patients in china remarkably showed a better qol than employed persons (tang et al., 2017). in contrast, well-reputed job owners in china reported high qol (yan et al., 2016). in sri lanka percapita income is low. thus, economic stability is a vital factor that needs to be considered in programs targeted at improving the qol of bc patients. the present study has no evidence of any significant association between the stage of cancer and qol in contrast to studies conducted in china (ban et al., 2021; cui, wang & wang, 2021; tang et al., 2017). node and metastasis were considered severe stages and bc patients with those conditions reported having low physical and environmental qol than those with the tumor stage. if bc patients were in severe stages, they may have many more ailments than the tumor stage and it would cause to have a lower qol (edib et al., 2016; park j-h et al., 2021). in china, the advanced stage was impacted to increase physical and psychological distress which negatively influenced the qol of bc patients (yeo et al., 2020). time since diagnosis did not show a significant impact on qol scores in the present study. if bc patients could get a correct diagnosis during a short period, then the patient could start treatment which facilitate them to have a higher qol. bc patients must face many bad outcomes due to delays in reporting/presentaiton, diagnosis, and treatment. studies conducted in china and malaysia revealed that a short time since diagnosis could cause to have higher qol (cui, wang & wang, 2021; yusoff et al., 2022). edib et al (2016) showed that bc patients in malaysia who had been diagnosed for more than 5 years scored significantly higher qol than others. however, in iran bc patients with a short duration of time since diagnosis had a lower qol in contrast to our findings (kiadaliri, bastani & ibrahimipour, 2012). treatment modalities such as surgery, chemotherapy, and radiotherapy influence the health and qol of bc patients. the type of treatment or current treatment did not significantly influence the qol of bc patients who participated in this study. in china, a higher qol was observed for bc patients who were on other treatment methods compared to patients who were on chemotherapy or radiotherapy (tang et al., 2017). side effects associated with chemotherapy and radiotherapy would be the reason for this observation. also, patients who had done breast-conserving surgery had significantly higher qol than those who did mastectomy. in malaysia, bc patients who had radiotherapy reported a low qol than the patients who did not face radiotherapy treatment (edib et al., 2016). in contrast, chemotherapy, radiotherapy, hormone therapy, and surgery had not had any significant impact on qol in bc patient in colombia (finck et al., 2018). also, no effect of chemotherapy was found on the overall qol of bc patients in poland (adamowic and waliszewska, 2020), and they further demonstrated that hormone therapy and trastuzumab therapy had increased the qol of the treated patients in clinical practice. studies conducted in malaysia and korea on bc patients showed that those who did not receive chemotherapy/radiotherapy were more likely to have higher qol (edib et al., 2016; park j-h et al., 2021). further, severe menopausal symptoms experienced by some bc patients in china (who used adjuvant chemotherapy) had reported the worst breast cancer specific qol (yeo et al., 2020). shin et al. (2017) studied the physical activity and qol of bc patients in korea. an increase in physical activity would reduce fatigue and pain and has increased sexual functioning causing to increase in qol. physical activity is vital to have physical fitness ihtp, 2(3), 272-285, 2022 cc by-nc-nd 4.0 issn 2563-9269 278 which would improve physical qol. tang et al. (2017) studied the impact of psychological variables on the qol of bc patients in china. depression, anxiety, health-related anxiety, dysfunctional illness perception, and sense of coherence would adversely affect the psychological well-being of bc patients. (weeratunga, senadheera & ekanayake, 2016; weeratunga et al., 2021) and it is important to provide psychological care services for bc patients to improve their qol. limitations this study had several limitations. the research was conducted using a relatively small sample of bc patients and they were selected from a tertiary care hospital located in southern sri lanka. it would be better if we were able to collect data on several potentially important correlates of qol such as treatment cost. response bias due to social desirability may also be a possible limitation. conclusion our observation that the qol of patients with bc was moderate is a good sign of the overall quality of services provided by the government for this target group. socio-cultural support available for bc patients should be improved to enhance their qol. age, marital status, past medical/surgical history, selfreported disabilities, and body image changes were a vital component that needs to be considered in psychological support services targeted at this population group. future studies should explore the possible psychosocial factors in sri lankan bc patients, using both quantitative and qualitative methods using a larger sample of bc patients in different clinical settings. longitudinal studies are warranted for the examination of causative factors of qol of bc patients. acknowledgement the authors wish to thank all study participants and collaborators of this study for their valuable time, contribution, and dedication to this study (former consultant oncologist, dr. upul ekanayake, and administrative staff and healthcare professionals of teaching hospital, karapitiya, galle, sri lanka). the faculty research grant, faculty of medicine, university of ruhuna, galle, sri lanka was further acknowledged. references adamowic, z., & waliszewska, b. (2020). quality of life during chemotherapy, hormonotherapy or antiher2 therapy of patients with advanced, metastatic breast cancer in clinical practice. health and quality of life outcomes, 18,134. https://doi.org/10.1186/s12955-020-01389x agnihotri, k., awasthi, s., chandra, h., singh, u., thakur, s. (2010). validation of who qolbref instrument in indian adolescents. indian journal of pediatrics, 77, 381–386. https://doi.org/10.1007/s12098-010-0041-1 alagazy, h. a., soltan, m. r., & soliman, s. s. (2020). anxiety, depression and perceived stress among breast cancer patients: single institute experience. middle east current psychiatry, 27(29), 1-10. https://mecp.springeropen.com/articles/10 .1186/s43045-020-00036-x arneja, j., & brooks, j. d. (2021). the impact of chronic comorbidities at the time of breast cancer diagnosis on quality of life, and emotional health following treatment in canada. plos one, 16(8), e0256536. https://doi.org/10.1371/journal.pone.0256 536 ban, y., li, m., yu, m., wu, h. (2021). the effect of fear of progression on quality of life among breast cancer patients: the mediating role of social support. health and quality of life outcomes, 19:178. https://doi.org/10.1186/s12955-021-018167 cui, c., wang, l., & wang, x. (2021). health-related quality of life and social constraints among chinese breast cancer patients: a cross-sectional study. health and quality of life outcomes,19, 238. https://doi.org/10.1186/s12955-021-018710 dehghan, m., jazinizade, m., malakoutikhah, m., madadimahani, a., iranmanesh, m. h., oghabian, s., et al. (2020). stress and quality of life of patients with cancer: the https://doi.org/10.1186/s12955-020-01389-x https://doi.org/10.1186/s12955-020-01389-x https://doi.org/10.1007/s12098-010-0041-1 https://mecp.springeropen.com/articles/10.1186/s43045-020-00036-x https://mecp.springeropen.com/articles/10.1186/s43045-020-00036-x https://doi.org/10.1371/journal.pone.0256536 https://doi.org/10.1371/journal.pone.0256536 https://doi.org/10.1186/s12955-021-01816-7 https://doi.org/10.1186/s12955-021-01816-7 https://doi.org/10.1186/s12955-021-01871-0 https://doi.org/10.1186/s12955-021-01871-0 ihtp, 2(3), 272-285, 2022 cc by-nc-nd 4.0 issn 2563-9269 279 mediating role of mindfulness. journal of oncology, 1-10. https://doi.org/10.1155/2020/3289521 edib, z., kumarasamy, v., abdullah, n. b., rizal, a. m., dubai, s. a. (2016). most prevalent unmet supportive care needs and quality of life of breast cancer patients in a tertiary hospital in malaysia. health and quality of life outcomes, 14, 26. https://doi.org/10.1186/s12955-016-0428-4 finck, c., barradas, s., zenger, m., hinz, a. (2018). quality of life in breast cancer patients: associations with optimism and social support. international journal of clinical and health psychology, 18, 27-34. https://doi.org/10.1016/j.ijchp.2017.11.002 globocan. (2020). sri lanka. retrieved from: https://gco.iarc.fr/today/data/factsheets/p opulations/144-sri-lanka-fact-sheets.pdf globocan. (2020). world. retrieved from: https://www.uicc.org/news/globocan-2020new-global-cancer-data handbook on comprehensive breast cancer care for healthcare workers. (2021). know about breast cancer: prevent, diagnose, treat & care. the national cancer control programme, ministry of health, sri lanka. retrieved from:https://www.nccp.health.gov.lk/stora ge/post/pdfs/comprehensive%20breast%2 0care%20book%20new%202021%20new%2 003-18.pdf iddrisu, m., aziato, l., & dedey, f. (2020). psychological and physical effects of breast cancer diagnosis and treatment on young ghanaian women: a qualitative study. bmc psychiatry, 353. https://doi.org/10.1186/s12888-020-027604 imran, m., al-wassia, r., alkhayyat, s. s., baig, m., alsaati, b. a. (2019). assessment of quality of life (qol) in breast cancer patients by using eortc qlq-c30 and br-23 questionnaires: a tertiary care center survey in the western region of saudi arabia. plos one, 14(7), e0219093. https://doi.org/10.1371/journal.pone.02190 93 jayasekara, h., rajapaksha, l., & aaronson, n. k. (2009). health related quality of life in patients with head-and-neck cancer in sri lanka: psychometric properties of the ‘sinhala’ version of the eortc qlqh&n35. psycho oncology, 18, 1116-1121. jayasekara, h., rajapaksha, l.c., & brandberg, y. (2008). measuring breast cancer –specific healthrelated quality of life in south asia: psychometric properties of the sinhala version of the eortc qlqbr23. quality of life research, 17(6), 927-932. kiadaliri, a. a., bastani, p., & ibrahimipour, h. (2012). health-related quality of life of breast cancer patients in iran: pooled analysis using generalized estimating equations. asian pacific journal of cancer prevention, 13, 941944. kumarapeli, v., seneviratne, r. a., & wijeyaratne, c. n. (2006). validation of whoqol bref to measure quality of life among women with polycystic ovary syndrome (pcos). sri lanka journal collage of community physicians, 11, 01-10. kumarapeli, v., seneviratne, r. a., & wijeyaratne, c. n. (2011). health-related quality of life and psychological distress in polycystic ovary syndrome: a hidden facet in south asian women. international journal of obstetrics and gynaecology, 118, 319-328. mokhatri-hesari, p., & montazeri, a. (2020). health-related quality of life in breast cancer patients: review of reviews from 2008 to 2018. health and quality of life outcomes, 18, 338. https://doi.org/10.1186/s12955020-01591 muthanna, f. m., karuppannan, m., hassan, b. a., mohammed, a. h. (2021). impact of fatigue on quality of life among breast cancer patients receiving chemotherapy. osong public health and research perspectives, 12(2), 115-125. https://doi.org/10.24171/j.phrp.2021.12.2. 09 muthanna, n., khairkar, p., hurtig, a. k., sebastián, m. s. (2017). quality of life determinants in breast cancer patients in central rural india. asian pacific journal of cancer prevention, 18 (12), 3325-3332. https://doi.org/10.22034/apjcp.2017.18.12 .3325 national cancer control programme. (2020). annual reportministry of health, sri lanka. https://doi.org/10.1155/2020/3289521 https://doi.org/10.1186/s12955-016-0428-4 https://doi.org/10.1016/j.ijchp.2017.11.002 https://gco.iarc.fr/today/data/factsheets/populations/144-sri-lanka-fact-sheets.pdf https://gco.iarc.fr/today/data/factsheets/populations/144-sri-lanka-fact-sheets.pdf https://www.uicc.org/news/globocan-2020-new-global-cancer-data https://www.uicc.org/news/globocan-2020-new-global-cancer-data https://www.nccp.health.gov.lk/storage/post/pdfs/comprehensive%20breast%20care%20book%20new%202021%20new%2003-18.pdf https://www.nccp.health.gov.lk/storage/post/pdfs/comprehensive%20breast%20care%20book%20new%202021%20new%2003-18.pdf https://www.nccp.health.gov.lk/storage/post/pdfs/comprehensive%20breast%20care%20book%20new%202021%20new%2003-18.pdf https://www.nccp.health.gov.lk/storage/post/pdfs/comprehensive%20breast%20care%20book%20new%202021%20new%2003-18.pdf https://doi.org/10.1186/s12888-020-02760-4 https://doi.org/10.1186/s12888-020-02760-4 https://doi.org/10.1371/journal.pone.0219093 https://doi.org/10.1371/journal.pone.0219093 https://doi.org/10.1186/s12955-020-01591 https://doi.org/10.1186/s12955-020-01591 https://doi.org/10.24171/j.phrp.2021.12.2.09 https://doi.org/10.24171/j.phrp.2021.12.2.09 https://doi.org/10.22034/apjcp.2017.18.12.3325 https://doi.org/10.22034/apjcp.2017.18.12.3325 ihtp, 2(3), 272-285, 2022 cc by-nc-nd 4.0 issn 2563-9269 280 retrieved from: https://www.nccp.health.gov.lk/storage/po st/pdfs/annual%20report%202020%20e%2 0version.pdf national cancer incidence and mortality data sri lanka. (2015). national cancer control programme, ministry of health. retrieved from: https://www.nccp.health.gov.lk/storage/pos t/pdfs/2015%20cancer%20registry%20%20t o%20email%20only_compressed%20(1).pdf park, j-h., jung, y. s., kim, j. y., bae, s. h. (2021). determinants of quality of life in women immediately following the completion of primary treatment of breast cancer: a crosssectional study, plos one, 16(10), e0258447. https://doi.org/10.1371/journal.pone.02584 47 park, j., rodriguez, j. l., o'brien, k. m., nichols, h. b., hodgson, m. e., weinberg, c. r., et al. (2021). health-related quality of life outcomes among breast cancer survivors. cancer, 127(7), 1114-1125. https://doi.org/10.1002/cncr.33348 prabhath, t. a., & ruban, r. (2020). the prevalence and correlates of depression among patients with breast cancer, attending outpatient clinics at two cancer units in sri lanka. sri lanka journal of psychiatry, 11(2), 13–19. http://doi.org/10.4038/sljpsyc.v11i2.8274 rezaei, m., elyasi, f., janbabai, g., moosazadeh, m., hamzehgardeshi, z. (2016). factors influencing body image in women with breast cancer: a comprehensive literature review. iranian red crescent medical journal, 18(10), e39465. https://doi.org/10.5812/ircmj.39465 ruggeri, m., pagan, e., bagnardi, v., bianco, n., gallerani, e., buser, k., et al. (2019). fertility concerns, preservation strategies and quality of life in young women with breast cancer: baseline results from an ongoing prospective cohort study in selected european centers. breast, 47, 85-92. https://doi.org/10.1016/j.breast.2019.07.00 1 seneviratne, s. (2020). cancer in sri lanka; trends, care, and outcomes. the sri lanka journal of surgery, 38(3), 01-12. http://doi.org/10.4038/sljs.v38i3.8772 shin, w. k., song, s., jung, s.y., lee, e., kim, z., moon, h. g., et al. (2017). the association between physical activity and health-related quality of life among breast cancer survivors. health and quality of life outcomes, 15,132. https://doi.org/10.1186/s12955-017-0706-9 sri lanka cancer registry. (2019). national cancer incidence and mortality data. national cancer control programme: 2019. sri lanka. retrieved from: https://www.nccp.health.gov.lk/storage/pos t/pdfs/cancer%20incidence%20data%20boo k-2019_compressed.pdf tang, l., fritzsche, k., leonhart, r., pang, y., li, j., song, l., fischer, i., et al. (2017). emotional distress and dysfunctional illness perception are associated with low mental and physical quality of life in chinese breast cancer patients. health and quality of life outcomes, 15, 231. https://doi.org/10.1186/s12955-017-0803-9 weeratunga, e., senadheera, c., hettiarchichi, m., perera, b. (2022). validation of the sinhalese version of brief cope scale for patients with cancer in sri lanka. bmc psychology, 10, 157. https://doi.org/10.1186/s40359-022-00863-z weeratunga, e., senadheera, c., hettiarchichi, m., ekanayaka, u., perera, b. (2019). psychosocial factors associated with quality of life of patients with cancer in southern sri lanka. faculty of allied health sciences, university of ruhuna. proceedings of 2nd annual research conference, 30-41. https://www.researchgate.net/publication/3 38164108_psychosocial_factors_associated _with_quality_of_life_of_patients_with_ca ncer_in_southern_sri_lanka weeratunga, e. b., senadheera, c., & ekanayake, u. (2016). psychological distress in cancer patients in southern province of sri lanka. the galle medical journal, 21(2), 1-7. https://gmj.sljol.info/articles/abstract/10.40 38/gmj.v21i2.7951/ weeratunga, e. b., senadheera, c., hettiarachchi, m., perera, b. (2021). the prevalence and correlates of depressive symptoms in patients with cancer treated in a tertiary health care facility in southern sri lanka. international journal of multidisciplinary studies, 8(2), 13 – 29. https://doi.org/10.31357/ijms.v8i2 https://www.nccp.health.gov.lk/storage/post/pdfs/annual%20report%202020%20e%20version.pdf https://www.nccp.health.gov.lk/storage/post/pdfs/annual%20report%202020%20e%20version.pdf https://www.nccp.health.gov.lk/storage/post/pdfs/annual%20report%202020%20e%20version.pdf https://www.nccp.health.gov.lk/storage/post/pdfs/2015%20cancer%20registry%20%20to%20email%20only_compressed%20(1).pdf https://www.nccp.health.gov.lk/storage/post/pdfs/2015%20cancer%20registry%20%20to%20email%20only_compressed%20(1).pdf https://www.nccp.health.gov.lk/storage/post/pdfs/2015%20cancer%20registry%20%20to%20email%20only_compressed%20(1).pdf https://doi.org/10.1371/journal.pone.0258447 https://doi.org/10.1371/journal.pone.0258447 https://doi.org/10.1002/cncr.33348 http://doi.org/10.4038/sljpsyc.v11i2.8274 https://doi.org/10.5812/ircmj.39465 https://doi.org/10.1016/j.breast.2019.07.001 https://doi.org/10.1016/j.breast.2019.07.001 http://doi.org/10.4038/sljs.v38i3.8772 https://doi.org/10.1186/s12955-017-0706-9 https://www.nccp.health.gov.lk/storage/post/pdfs/cancer%20incidence%20data%20book-2019_compressed.pdf https://www.nccp.health.gov.lk/storage/post/pdfs/cancer%20incidence%20data%20book-2019_compressed.pdf https://www.nccp.health.gov.lk/storage/post/pdfs/cancer%20incidence%20data%20book-2019_compressed.pdf https://doi.org/10.1186/s12955-017-0803-9 https://doi.org/10.1186/s40359-022-00863-z https://www.researchgate.net/publication/338164108_psychosocial_factors_associated_with_quality_of_life_of_patients_with_cancer_in_southern_sri_lanka https://www.researchgate.net/publication/338164108_psychosocial_factors_associated_with_quality_of_life_of_patients_with_cancer_in_southern_sri_lanka https://www.researchgate.net/publication/338164108_psychosocial_factors_associated_with_quality_of_life_of_patients_with_cancer_in_southern_sri_lanka https://www.researchgate.net/publication/338164108_psychosocial_factors_associated_with_quality_of_life_of_patients_with_cancer_in_southern_sri_lanka https://gmj.sljol.info/articles/abstract/10.4038/gmj.v21i2.7951/ https://gmj.sljol.info/articles/abstract/10.4038/gmj.v21i2.7951/ https://doi.org/10.31357/ijms.v8i2 ihtp, 2(3), 272-285, 2022 cc by-nc-nd 4.0 issn 2563-9269 281 world health organization quality of life assessment group (who-qol group). (1988). development and general psychometric prospects. social science and medicine, 46, 156986. wu, h. s., davis, j. e., & chen, l. (2019). impact of comorbidity on symptoms and quality of life among patients being treated for breast cancer. cancer nursing, 42(5), 381387. https://doi.org/10.1097/ncc.00000000000 00623 yan, x., chen, x., & li, m. (2019). prevalence and risk factors of anxiety and depression in chinese patients with lung cancer: a crosssectional study. cancer management and research, 11,4347– 4356. https://www.dovepress.com/prevalenceand-risk-factors-of-anxiety-and-depressionin-chinese-patie-peer-reviewed-fulltextarticle-cmar yan, b., yang, l-m., hao, l-p., yang, c., quan, l., wang, l-h., et al. (2016). determinants of quality of life for breast cancer patients in shanghai, china. plos one, 11(4), e0153714. https://doi.org/10.1371/journal.pone.01537 14 yeo, w., pang, e., liem, g. s., suen, j. j., ng, r. y., yip, c. c., et al. (2020). menopausal symptoms in relationship to breast cancerspecific quality of life after adjuvant cytotoxic treatment in young breast cancer survivors. health and quality of life outcomes, 18, https://doi.org/10.1186/s12955-020-1283-x yuan, l., pan, b., & wang, w. (2020). prevalence and predictors of anxiety and depressive symptoms among patients diagnosed with oral cancer in china: a cross-sectional study. bmc psychiatry, 20: 394-409. https://bmcpsychiatry.biomedcentral.com/ articles/10.1186/s12888-020-02796-6 yusoff, j., ismail, a., riza, m., manaf, a., ismail, f., abdullah, n., et al. (2022). quality of life of women with breast cancer in a tertiary referral university hospital. health and quality of life outcomes, 20(15),1-13. https://doi.org/10.1186/s12955-022-019211 https://doi.org/10.1097/ncc.0000000000000623 https://doi.org/10.1097/ncc.0000000000000623 https://www.dovepress.com/prevalence-and-risk-factors-of-anxiety-and-depression-in-chinese-patie-peer-reviewed-fulltext-article-cmar https://www.dovepress.com/prevalence-and-risk-factors-of-anxiety-and-depression-in-chinese-patie-peer-reviewed-fulltext-article-cmar https://www.dovepress.com/prevalence-and-risk-factors-of-anxiety-and-depression-in-chinese-patie-peer-reviewed-fulltext-article-cmar https://www.dovepress.com/prevalence-and-risk-factors-of-anxiety-and-depression-in-chinese-patie-peer-reviewed-fulltext-article-cmar https://doi.org/10.1371/journal.pone.0153714 https://doi.org/10.1371/journal.pone.0153714 https://doi.org/10.1186/s12955-020-1283-x https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-020-02796-6 https://bmcpsychiatry.biomedcentral.com/articles/10.1186/s12888-020-02796-6 https://doi.org/10.1186/s12955-022-01921-1 https://doi.org/10.1186/s12955-022-01921-1 ihtp, 2(3), 272-285, 2022 cc by-nc-nd 4.0 issn 2563-9269 282 table 1. socio-demographics and clinical characteristics of bc patients (n= 97) variables categories n (%) age (years) ≤ 50 37 (38) > 50 60 (62) marital status married 76 (78) unmarried/single 21 (22) household income level < rs. 10000 60 (62) > rs. 10000 37 (38) stage of cancer tumor 81 (84) node+ metastasis 16 (16) time since diagnosis ≤ 12 months 57 (59) > 12 months 40 (41) past medical/surgical history (comorbidities) medical 22 (23) surgical 12 (12) both 10 (10) none 53 (55) self-reported disabilities disables 38 (39) none disables 59 (61) body image changes (e.g., loss of breast/hair, skin changes, etc.) present changes 84 (87) no changes 13 (13) current or planned treatment chemotherapy 78 (80) radiotherapy 12 (12) other 7 (7) ihtp, 2(3), 272-285, 2022 cc by-nc-nd 4.0 issn 2563-9269 283 table 2. the total scores and sub-scales/domains mean scores of qol sub-scale/domains mean (sd) ci 95% physical domain 60.97(11.56) (58.64-63.30) psychological domain 63.52(11.63) (61.17-65.86) social domain 47.86(13.89) (45.05-50.66) environmental domain 69.05 (8.79) (67.28-70.82) total score of qol 248.09(34.07) (241.23-254.96) ihtp, 2(3), 272-285, 2022 cc by-nc-nd 4.0 issn 2563-9269 284 table 3. effects of socio-demographics and clinical variables on qol (x̄ (sd)) variables n physical qol x̄ (sd) psychological qolx̄ (sd) social qol x̄ (sd) environmental qolx̄ (sd) total qol x̄ (sd) age (years) ≤ 50 37 64.08(10.12) 62.32(11.37) 51.51(16.86) 68.19(9.06) 246.11(36.42) > 50 60 59.05(12.04) 64.25(11.82) 45.60(11.27) 69.58(8.66) 238.48(31.97) pvalue 0.03 0.43 0.06 0.45 0.28 marital status married 76 60.92(11.22) 64.61(10.80) 49.33(12.92) 69.53(7.25) 244.38(28.11) unmarried 21 61.14(12.98) 59.57(13.83) 42.52(16.19) 67.33(13.04) 230.57(48.40) pvalue 0.93 0.07 0.04 0.46 0.22 household income ≤ lkr. 10,000 60 60.92(12.13) 63.13(12.49) 45.85(13.57) 67.95(9.49) 237.85(35.56) > lkr. 10,000 37 61.05(10.71) 64.14(10.23) 51.11(13.98) 70.84(7.30) 247.14(30.12) pvalue 0.95 0.66 0.07 0.11 0.18 cancer stage tumor 81 61.48(11.12) 63.46(11.70) 47.90(14.30) 69.32(9.07) 242.16(34.27) node+ metastasis 16 58.38(13.66) 63.81(11.64) 47.63(12.02) 67.69(7.31) 237.50(31.62) pvalue 0.32 0.91 0.94 0.50 0.61 time since diagnosis ≤ 12 months 57 61.32(9.99) 64.91(11.52) 47.12(14.33) 69.00(8.19) 242.35(34.06) > 12 months 40 60.48(13.60) 61.53(11.64) 48.90(13.35) 69.13(9.69) 240.33(33.65) pvalue 0.74 0.15 0.53 0.94 0.74 past medical/surgical history (comorbidities) medical 22 58.95(13.18) 61.23(8.91) 47.41(10.00) 69.91(9.12) 237.50(30.85) surgical 12 62.75(13.59) 65.75(9.02) 48.42(11.38) 71.00(4.67) 247.92(25.73) both 10 61.00(9.36) 55.10(10.55) 40.00(18.30) 68.80(8.80) 224.90(32.07) none 53 61.40(10.93) 65.55(12.65) 49.40(14.70) 68.30(9.45) 244.64(36.32) pvalue 0.80 0.04 0.27 0.76 0.30 self – reported disabilities ihtp, 2(3), 272-285, 2022 cc by-nc-nd 4.0 issn 2563-9269 285 yes 38 58.39(12.94) 58.66(11.04) 46.16(16.18) 66.39(10.27) 229.61(37.60) no 59 62.63(10.35) 66.64(10.99) 48.95(12.22) 70.76(7.29) 248.98(28.84) pvalue 0.07 0.001 0.36 0.02 0.005 body image changes yes 84 60.40(11.50) 62.68(12.07) 47.75(14.59) 68.79(9.11) 239.62(34.58) no 13 64.62(11.68) 68.92(6.17) 48.54(8.41) 70.77(6.37) 252.85(25.80) pvalue 0.22 0.007 0.85 0.45 0.19 current treatment chemotherap y 78 58.82(12.10) 63.47(12.41) 48.55(13.93) 68.55(9.11) 240.40(35.27) radiotherapy 12 63.83(5.95) 62.08(9.43) 41.08(15.87) 68.83(7.96) 235.83(28.90) other 7 68.86(9.38) 66.43(3.20) 51.71(4.53) 75.00(3.46) 262.00(11.79) pvalue 0.09 0.73 0.16 0.17 0.22 note: x ̄-mean, sdstandard deviation, qolquality of life for two groups independent ttest was applied and for more than 2 groups one-way anova was performed. significant level was considered as p < 0.05. ihtp, 2(3), 298-309, 2022 cc by-nc-nd 4.0 issn 2563-9269 298 health promotion in primary care across brazil: genealogic-inspired qualitative study fernanda carlise mattioni1, liara saldanha brites2, liciane da silva costa dresch1, cristianne maria famer rocha3 1nursing school, federal university of rio do grande do sul, porto alegre, rio grande do sul, brazil; 2postgraduate education program, federal universtity of rio grande do sul, porto alegre, rio grande do sul, brazil; 3departament of colective health, escola de enfermagem, federal universtity of rio grande do sul, porto alegre, rio grande do sul, brazil corresponding author: f. c. mattioni (nandacmattioni@gmail.com) abstract objective: to describe and analyze health promotion practices in primary health care. method: genealogic-inspired qualitative, descriptive, and exploratory research conducted in a phc service in porto alegre, rio grande do sul, brazil. twenty-three semi-structured interviews were held with the service staff from february to may 2020. the data were qualitatively analyzed using genealogically inspired techniques, which allowed us to identify tensions, disputes, discourses, practices, and power relationships. results: we established eight sets of health promotion practices: 1) educational activities focused on behavioral/habit changes and development of personal abilities; 2) intersectoral practices and community social networks involving other community equipment; 3) practices that encourage community organization and participation; 4) integrative and complementary health practices; 5) practices that stimulate meeting people, sociability, art, and creativity; 6) practices that encourage environmental and food sustainability; 7) practices that stimulate income generation; 8) community communication practices. conclusion: we identified a heterogeneous field of practices to promote health established through the circulation of different types of knowledge and powers. the practices are permeated by discourses linked to neoliberal governability and practices that position themselves against such discourse. keywords health practice; health promotion; knowledge; primary health care; qualitative methods background health promotion (hp) is a polysemic concept permeated by different epistemological perspectives and established by different discourses. this argument translates foucault’s (2014) genealogical approach, according to which the discourses and practices are established in a field of knowledgepower relationships. discourses and hegemonic practices will emerge from its correlation of forces, which we can also call “regimes of truth”. however, the discourses and practices that shape the regimes of truth do not disappear. they continue in the field, occupying spaces of resistance and counter-conduct (foucault, 2008a), even if on the margins. individual and population control and regulation mechanisms have been created throughout the modern era to allow the development of capitalism in its different phases. since the 18th century, the need to reduce mortality, increase life expectancy, and have people offer their workforce was more explicit. biopolitics appeared in this context. it is a set of strategies enacted to make the population live. the population regulating method since the 18th century is called “governmentality” by foucault. it consists of a group of techniques operated by different (technical, legal, and institutional) devices to guide people’s behavior and facilitate homogeneous individual and collective behavior (foucault, 2008a). ihtp, 2(3), 298-309, 2022 cc by-nc-nd 4.0 issn 2563-9269 299 the governmentality practices are part of neoliberal rationality, characterized as a socioeconomic design in which market relationships should be as accessible as possible, and the actions of the state are, to a certain extent, limited to regulating such relationships. besides this, governments should invest as minimum as possible in the social area, barely enough to keep social balance, so that the population can continue to be productive and consume the goods and services offered by the market. resistance and counter-conducts emerge before these neoliberal governmentality practices. counter-conduct is the “struggle against the processes implemented for conducting others” (foucault, 2008b, p.266). in other words, the use of different conduct than the one expected by a governmentality practice. the governmentality strategy has been shifting during the phases of capitalism, depending on economic and social changes. in this sense, health promotion can be understood as a biopolitical strategy of governmentality since it operates discourses and practices that aim to shape the conduct/behavior of individuals and communities. the hp concept was created at the first international conference on health promotion in ottawa, canada, and sees health as a resource for life and not as a goal of living. thus, health is a positive concept emphasizing social and personal resources and physical capabilities. hp is not just the health sector’s responsibility and exceeds a healthy lifestyle while also providing the conditions for building a healthy lifestyle (world health organization, 1986). the contemporary concept of health promotion relates to several values: quality of life, solidarity, equity, democracy, citizenship, development, participation, and partnership. it is also associated with adopting different articulately enacted strategies: from the state (health public policies), the community (reinforcing community action), the individuals (developing personal abilities), the health system (reorienting strategies), and intersectoral partnerships. health promotion provides for multiple responsibilities for problems and solutions towards the social determinants of health, seen as the conditions in which life takes place, encompassing individual factors and the country’s macroeconomic situation (buss et al., 2020). health promotion (hp) permeates the different mechanisms to face the social determinants of health (sdh). therefore, it can be understood as an expansion and a conceptual and operational requalification of the health issue in its growing complexity, embracing new policies and practices of intervention in the health-disease process and for an improved quality of life in general (carvalho et al., 2004). different practices prevail in the phc context, ranging from educational activities to practices that stimulate community participation and organization to claim better living conditions as a right to health. in brazil, hp is officially systematized by the legislation and technical documents of the brazilian unified health system (sus). the 1988 brazilian constitution (brasil, 1988) and the founding documents of the health system – law n° 8.080 (brasil, 1990a) and law n° 8.142 (brasil, 1990b) – highlight health promotion as a priority action in their texts. all health policies are established in the care tripod (assistance/care/rehabilitation), disease prevention, and health promotion. hp also advanced slowly in the 1990s, a period marked by neoliberal governments. over the years, hp and phc have been built and updated per the possible conditions of each country in a specific historical period. in brazil, the health movement established in the 1970s amidst military dictatorship was a crucial for building the unified health system (sus). through intense social mobilization, built on grassroots work with communities, the brazilian health movement legitimized health as a social right in the 1988 federal constitution (brasil, 1988). the 1990s were fundamental for the construction and implementation of public policies in the country, in a process marked by disputes over a societal project, and the influence of neoliberal rationality in this process is notorious. gallo (2017) argues that, in this period and the following decade, a state rationale anchored in neoliberal democratic governmentality prevailed in the country, which combined the neoliberal economic agenda with representative participation of society, capable of legitimizing the social policies built. in the field of health, fleury (2009) assessed that the context in which the ihtp, 2(3), 298-309, 2022 cc by-nc-nd 4.0 issn 2563-9269 300 neoliberal project exercised broad control of brazilian society hampered the construction of the sus in convergence with the proposals formulated by the health reform movement, pointing out a paradox in the movement’s history: when it was established as public policy, under adverse and partial conditions, it lost its transformative force and its libertarian nature as an instituting movement. in this context, the same author believes that our chances of reclaiming the struggle to overcome the structural inequality that characterizes brazilian society go through the permanent construction of the subject so that we can again put the established in its place. the tensions between rationalities and society projects have greatly influenced the structuring of brazil’s sus, phc, and health promotion. the plural rationalities in the field of health policies represents an arena in which the different pieces of knowledge constitute tensions and power relationships that will be translated into health practices. this situation can be identified in the technical-legal documents that refer to health policies and the practices effectively carried out in sus health services. the discussions escalated in brazil only in the 2000s, following the establishment of the national health promotion policy (pnps) in 2006. in this document, hp is understood as one of the strategies to promote health, a way of thinking and acting by articulating other policies and technologies developed by the brazilian health system, which can build actions to meet health social needs (brasil, 2006). a new pns was updated and published in 2014 (brasil, 2014), broadening the scope of the practices. however, it is challenging to implement the guidelines established by this policy in the current context of lack of investment in social policies and public health expenses. aim according to the pnps and the national primary care policy (pnab) (brasil, 2017), the brazilian primary health care (aps) is a privileged space to enact health promotion practices, as the personnel resides within the territories in which people live. furthermore, one of the principles of aps, longitudinality, provides for the follow-up through the years and the connection with the community, favoring the different possibilities of hp practices. this article aims to describe and analyze hp practices held in primary health care setting. methods we performed genealogically inspired qualitative field, descriptive and exploratory research in the context of aps in porto alegre, in rio grande do sul, brazil. the genealogically inspired qualitative research allows identifying tensions, disputes, practices, and power relationships (foucault, 2014). the research is being developed in the unified health system (sus) context. brazilian public health services are free and universal to every brazilian or foreign citizen and are a constitutional right. they are organized hierarchically in a network and must have coordinated action. thus, sus first level of care is characterized by phc, also referred to as primary care in brazil. the secondary level is intended for medical specialties, and the tertiary level consists of a hospital network and high technological density procedures. currently, phc is organized in the country through health facilities installed near the territories of local communities. such establishments are staffed with health teams that can be characterized as family health strategy (esf) teams or not. esf teams are generally the most complete, with a greater diversity of professional cores, and receive more significant funding. this way, such teams are expected to provide different health practices, offering quality care to the population served (brasil 2017). the research is being developed in the health units (hu) of the community health service (chs) of the conceição hospital group (ghc), one of the largest brazilian hospital institutions. the chs is a phc reference for people of the municipality’s northern zone (about 100 thousand inhabitants). this service was established in the late 1970s in brazil’s popular mobilization for democracy and social rights. the health movement of intellectuals and civil society built the basis for what the unified health system would become in the following decade. currently, it consists of twelve health facilities, 39 family health strategy teams (esf), four family health support centers (nasf), a street clinic team, three psychosocial care centers (caps), with one children ihtp, 2(3), 298-309, 2022 cc by-nc-nd 4.0 issn 2563-9269 301 caps (capsi), one alcohol and drugs iii caps (caps ad iii), and one caps intended for the care of users, adults, and patients with severe mental disorders (caps ii). the research data was produced through semistructured interviews with the personnel in charge of leading health promotion practices in 12 primary health care centers. these centers are responsible for attending to approximately 100,000 people. the professionals interviewed (and their respective numbers) were social service workers (6), nurses (5), psychologists (4), community health workers (3), physicians (2), dentists (2), and a nutritionist (1), totaling 23 participants. the inclusion criteria of the participants were to be a worker of the researched service, responsible for carrying out health promotion practices. workers who did not perform such practices were excluded. the interviews were conducted from february to may 2020. most were held in person, and those held in april and may were through video calls, due to the social distancing protocols to avoid the spread of coronavirus. the respondents were chosen by the snowball technique, thus a non-probabilistic sample, using chains of reference. we started by contacting key informants, called seeds, to locate others with the profiled need for the research within the participant staff (vinuto, 2012) to map the workers directly involved with the health promotion practices. the key informants (or seeds) participated in the research as respondents and provided us with the contact of possible participants. we discontinued the interviews when noticing that the hp practices and narratives were repeating themselves, indicating a saturation point, as provided for by the snowball strategy (vinuto, 2012). the interviews were recorded in audio and transcribed. besides this, we used field notes to document the researcher/interviewer’s impressions. the qualitative analysis data was carried out by the main researcher (first author of this article) and revised by the researchers who composed the authorship of the text. the analysis consisted of the following steps: careful reading of the transcribed interviews; characterization and description of health promotion practices, grouping them into sets (similar themes, which were repeated in the interviews, grouped together); analysis of the sets of practices based on the theoretical-methodological framework of hp and foucauldian concepts-tools. its characteristics were analyzed from the description of each practice, identifying whether its effect was intended only for the modulation of behaviors or if it had a broader scope. thus, it was possible to activate foucauldian concepts, according to which actions aimed at modulating ways of living can be characterized as biopolitics, within which neoliberal governmentality is the mechanism of action that can be observed in contemporary times. health promotion practices with an expanded scope, which exceed just trying to modulate behaviors, can be understood as resistance and counter-conducts, in the foucauldian sense of these two concepts. ethics consideration the ethical procedures provided for in resolution n° 466/12, which regulates brazilian human research, were observed throughout the study (brasil, 2012). data confidentiality and anonymity of the participants were assured, along with the possibility of withdrawing from the study at any time. before conducting the interviews, the informed consent term (ict) was read and signed in two copies, one copy for the researcher and the other for the study participant. the collected data were used solely for academic purposes and will be kept under the custody of the researcher for five years, when they will be destroyed. the research was approved by the research committee of the school of nursing of the federal university of rio grande do sul (compesq/ufrgs), primary health care research center of the conceição hospital group (cepaps/ghc), and the research ethics committees of the federal university of rio grande do sul (annex a) and the conceição hospital group, under protocol numbers caae 16078319.7.0000.5347 and caae 16078319.7.3001.5530, respectively. results ihtp, 2(3), 298-309, 2022 cc by-nc-nd 4.0 issn 2563-9269 302 the health promotion practices reported by the respondents were grouped into eight thematic groups (presented below). practices were grouped in one or more sets. the number indicated in parentheses represents the number of health centers that offer such practices. below each group of themes/practices, we present the participants’ statements that characterize or detail the practices included in it. 1)educational activities focused on behavioral/habit changes and development of personal abilities: hypertension and diabetes group (12); school health program-saúde na escola (12); saúde no prato/healthy eating group (12); smoking group (12); walking group (06); women’s group (05); sociability and mental health group (05); children’s group (05); pregnant group (04); teenage group (04); children’s parents and caretakers (02); collective activities of the bolsa família (family aid) (01); men’s group (01); use of digital media for communication, health education, and mobilize the community (02); radio program (01); family planning (01); and, children’s group on oral health (01). we have many patients that come many times for the same things. we’d like them to have some empowerment in their care, so they don’t need to demand so much. our main objective, of course, is that the patient is well and that their health is okay (painting). to advise them on the guidelines, what needs to be translated to people, their everyday lives, and their conditions. of course, we also want people to lose weight to control their diabetes (music). 2)intersectoral practices and community social networks, involving other community equipment: school health program-saúde na escola (pse) (12); gardening group (04); collective activities of bolsa família (01); chico pão bakery (01); and, social assistance network meetings (01). work on prevention issues, health promotion, and diagnosis with the children, the teachers, and the health team (cinema). 3)practices that stimulate community organization and participation: local health council (12); participative planning (05); community assemblies (02); use of digital media for communication, health education, and mobilize the community (02); collective activities of bolsa família (01); and, immigrant women’s group (01). we have micro and macro-objectives: organizing the access and individual demands in collective demands to stimulate within the community the idea of health as a social right, a citizen’s right (capoeira). to prioritize actions agreed upon by the staff and users (theater). 4) integrative and complementary practices to health: meditation group (05); reiki (02); auriculotherapy (02); tai chi group (01); and bio dance (01). to have spaces in which we could have meditation experiences. to have spaces for self-knowledge. however, mainly to have a space for practice (hummingbird). 5)practices that stimulate meeting people, sociability, art, and creativity: sociability group (08); walking group (06); handcraft/manual workgroup (05); women’s group (05); sociability and mental health group (05); children’s group (05); pregnant group (04); teenage group (04); gardening group (04); culture points (03); elderly sociability group (03); creative writing group (01); immigrant women’s group (01); dance at school group (01); workgroup não pire (mental health for the staff faced with the covid-19 pandemic) (01); men’s group (01); and happy visits (clowns) (01). to do some activity that was not about health, to talk (…) on how one gets pregnant, women’s body, having to go to the dentist, high pressure is terrible for…no “we don’t talk about these things. in this group you come, and you don’t talk about diseases. we have depressed people, then [instead of saying] “what are you feeling?”, (…) you propose: “let’s do ihtp, 2(3), 298-309, 2022 cc by-nc-nd 4.0 issn 2563-9269 303 something and you’ll forget what you’re feeling” in a playful way (vegetable). (...) because someone with diabetes cannot eat cake (…) everyone knows what you can and cannot eat, it is not in this group that i'll tell you what you can and cannot eat. i work that with my colleagues as well. you cannot supervise (travel). to see the body differently. in the health service, one sees the organic body. to see a body that dances (dance). 6) practices that stimulate environmental and food sustainability: gardening group (04); chico pão bakery (01); and recycling shed (01). the vegetable garden idea started in partnership with the mother’s club. (…) an idea started to refer people from the center to the garden, mainly people with mental health issues (…) they work on the land, and after the harvest, they can take it home. they harvest lettuce and arugula (vegetable). 7) practices that stimulate income generation: handcraft/manual workgroup (05); univens/clothes making-women cooperative (01); and chico pão bakery (01). the aim is to produce handicrafts to sell and generate income to fund the tour the group wants to do (creative art). the health center joins the educational work of the chico pão bakery, which is a partnership between the mother’s club and the social assistance policy. the teenagers take part in these activities on monday, wednesday, and friday afternoon, and, systematically, we are called to do workshops with the teenagers [with themes decided by them]: theater, violence, sexuality, gender…so it is a powerful space. there is a group of workers in the recycling shed that, sometimes, the team also does some workshops with them (capoeira). 8) communication practices with the community: use of digital media for communication, health education, and mobilizing the community (02); and radio program (01). with social distancing due to the covid pandemic (…), i knew that the acs communicated through messages, but i had never imagined its level. when i sat down with them to send information, i found out they have a ‘transmission line’ with 200 people, no, [with] 200 families. this is very powerful! we are now trying to send all this to the messaging app of the health center (theater). besides the in-person group, we created a group to exchange messages and put the immigrant women in touch in a network. in the pandemic period, they continue to communicate through this group. they question the vaccination and the health center’s work. they also use the space to ask for information from one another. sometimes, they ask for help to care for each other’s children (flower). concerning its duration, we had old practices, some from the time the health centers were created (the 1980s), until more recent ones, established in the last five years. the oldest one is participative planning, which started 27 years ago in the health center. the most recent is the medication group, which started two years ago. the oldest practices are those regarding sociability and participation groups. the most recent ones are the integrative and complementary practices to health, which encompass the so-called traditional and complementary/alternative medicine (mt/mca), whose policy was approved in brazil in 2006 (brasil, 2006). the health promotion activities are mostly held weekly, and some, every fortnight. the covid-19 pandemic has suspended some group activities, as they depend on gatherings. the staff started to use health education practices through digital platforms. the participation of different professionals was described in all practices, giving them a multidisciplinary nature. we highlight the participation of community health workers (acs) present in many activities. ihtp, 2(3), 298-309, 2022 cc by-nc-nd 4.0 issn 2563-9269 304 (...) many professions participate, acs, odontology, nursing (…) many professionals participate in the group (mandala). the acs are essential. they are always very involved in participative planning (theater). another important feature was the participation of residents from the multidisciplinary residency in family and community health and the residency in family and community medicine, who were often also involved in the creation of hp practices: we had the participation of residents from social service and psychology. we also had the participation of a resident in nutrition that was well engaged with the group (bacurau). the idea for a group of immigrant women came from a social service resident who was already familiarity with the language. she identified the need to help these women articulate themselves into a network. that is where the idea for the group started (flor). the profile of participants is heterogeneous, corresponding to the characteristics of each practice (children, teenagers, older adults, and women). however, the staff confirmed that women use the health services more and tend to participate more in the hp activities: it is well distributed between men and women but tends to have more women because women traditionally seek care more and have more connections with the health center (van gogh). regarding the methodologies used, we highlight the workers’ creativity in creating the proposed activities. the hp practices often use methodologies that stimulate involvement and participation. many workers use playful resources and workshops to enact the practices. the materials used are low-cost, mainly office and handcraft supplies, old magazines and newspapers, sound system, and food. the institution responsible for managing the teams provides part of the material, mainly office ones. the workers and users of the system also mobilize themselves to get the resources and implement the practices: the management gives us the material for the activities: paper, cardboard, crayons, paint, and scissors. the staff team also brings old newspapers and magazines…everyone helps out (happiness). we seek donations in the markets and sell takeaway meals to raise funds to build the community vegetable garden (vegetable) according to the interviews, in all hp practices, the central element of the activities is the meeting between workers and users and among users. to do so, all that is required is available space. some health centers have with physical structure problems. thus, they partner with other community equipment (such as community associations, church spaces, schools, and others) to facilitate these meetings. even so, in some circumstances, respondents reported that the lack of physical space made it impossible to carry out some practices. discussion we should highlight some points in the data presented. the time when the practices started can be related to the historical moments of each period: the 1980s witnessed a strong popular movement to defend the sus; pics in the context of sus and primary health care have earned legitimacy in the last years, which can explain why hp practices, such as participative planning and sociability groups, are around 30 years old, while pics, for instance, have primarily been created in the past five years. the multidisciplinary composition identified in the hp practices has been productive in broadening its reach and impacting the actions. the circulation of different types of knowledge allows a complementary action and increases the capillarity and power around the fields of hp and primary care. silva et al. (2014) points out the power of multidisciplinary work. health practices held jointly by different professionals are more likely to carry more comprehensive approaches to primary health care users. the multidisciplinary residency in family and community health and the residency in family and community medicine programs, whose study field is professional training, fulfill an essential role in the ihtp, 2(3), 298-309, 2022 cc by-nc-nd 4.0 issn 2563-9269 305 preservation, extension, and qualification of hp practices in primary care. this situation is apparent in the studied setting, as all reported practices had the participation of residents from different professional areas. besides this, because they are constantly participating in debates on their training fields, the residents stress the inclusion of other discourses in the field of hp, often proposing approaches closer to equity and full care, approximating the approaches proposed by hp to the broad concept of health and social determinants of health. the work of residency in the field of hp practices in primary care is one of counter-conduct when proposing practices that attempt to offer alternatives to neoliberal rationality (foucault, 2008b). thus, it is closer to reaching changes in the process and the organization of the work and the routine team practices. it establishes itself as an action and an educational process, broadening the scope of the work to allow changes in the relationships, processes, and answers to the population’s health needs (silva et al., 2019). concerning the profile of participants in hp practices, we know that women historically use primary care services proportionally more. this tendency was confirmed in a study (guibu et al., 2017) that researched the main characteristics of primary care users in brazil, where 75.8% of the 8,676 research participants were women. however, in this research, we identified only one activity exclusively focused on the male public: the men’s group. considering the morbidity and mortality profile in this population segment, the creation of activities focused on this public is a gap and a possibility for health promotion. an article on the theme (trilico et al., 2015) pointed out the need to support more research to understand the real needs of these groups better and create more effective interventions to promote health. we also highlight the importance of thinking about spaces that move away from an approach solely based on risky behavior towards a more comprehensive approach to men’s health. we should underscore the use of participative methodologies in the hp practices described and the technologies often used. soft, soft-hard, and hard technologies are employed in health routine work. soft technologies do not imply the use of instruments in health care. soft-hard technologies presuppose using simple instruments, while hard technologies use highly technological equipment to perform tests and specialized procedures (merhy, 2007). thus, the cost-effectiveness relationship of the care strategies, such as hp practices, which use soft technologies, are stressed (merhy, 2007), as health is built from the meeting and the production of subjectivities. however, as a tendency, based on how political, technical, and managerial rationales operate in contemporary society, these types of knowledge connected to hard and soft-hard technologies gain favorable arguments and impose themselves over others, leading to an unbalance of power relationships when faced by other care possibilities. this situation even happens when there is no way to prove that this care strategy, focused on medicalization and the use of much technology, could have good results, as the decision to use technological designs is given by economic, cultural, social, and political interests that, nowadays, are considered more adequate, timely, and legitimate than others (merhy, 2007). this tension becomes stronger as technological development allows new procedures in the biomedical and pharmaceutical sectors, opening possibilities to anticipate the care or healing of an increasing number of diseases. moreover, they announce projects of human improvement using specific drugs and robotic innovations. such aspects can seem futuristic. however, the wish to control, as much as possible, all risk factors still linger in the imagination of people and health services. they are hyper preventive (or pre-emptive) constructions in which one searches for intervention even before action. however, the indication of specific practices seems quite cynical in an unequal setting – often of extreme poverty – faced by the communities, in which the prescription of a medicine or a therapy is often entirely out of reach (castiel et al., 2016). confronted by hyper prevention, the hp practices stimulate meeting moments, using light technologies to create reflexive spaces (such as participative planning, community assemblies, and local health councils) or even spaces to share their presence and ihtp, 2(3), 298-309, 2022 cc by-nc-nd 4.0 issn 2563-9269 306 joy (such as sociability, art, creativity groups, for example). they are counter-conduct actions against the perspective of extreme risk control, improvement of humans, and behavior modulation. the hyper preventive logic is inscribed in contemporary biopolitics to make people more productive so that the capitalist system can exploit their bodies and brains to the maximum. thus, the effort to legitimate discourses in synch with hyper prevention is aligned with the neoliberal governmentality that shapes behaviors towards super production in the workplace, and reinforces the health market that, increasingly, offers specialized procedures, which people are led to believe they need (carvalho, 2020; rose, 2011). the educational practices, targeting the behavioral/habit changes, and the development of personal abilities are central in the respondents’ reports. the group activities, which use health education, are sedimented in primary care and are even legitimized in legal documents. moreover, such activities join and sometimes are entangled with those on sociability, art, and creativity. these data follow the results identified in a literature review (mattioni et al., 2021), which pointed out a predominance of hp educational practices focused on habit and behavioral changes and the development of personal abilities. this review showed that many educational practices are still held in isolation, in a vertical perspective of health education, dismissing life contexts and not followed by public policies that favor the adoption of healthy habits by individuals and communities. on the other hand, this same study shows that hp practices that target sociability, art, and creativity also find space in the practice setting, holding a counter-conduct place against the rationale of vertical (and blaming) health education used by social groups strongly permeated by neoliberal rationality. less condemning approaches tend to be more effective in health promotion, as they consider the limitations imposed by the quick pace of contemporary life when establishing healthy habits (nabarro et al., 2020). thus, we identified the presence of coexisting different practices in the field of hp in the researched setting, sometimes working cooperatively or in opposition. in the reported practices, we could perceive neoliberal discourses aligned with the accountability of individuals and the community and the control of risk factors. on the other hand, other discourses represent counter-conducts against the hegemonic approach of health promotion that inscribes itself in the neoliberal governmentality perspective. the latter characterize practices that are less capable of producing bodies apt to work and consume and more towards producing subjectivities that enjoy life. such counter-conducts are strengthened by practices that promote reflexive processes among (and with) the community, under a broader concept of health, the social determination of health, the commercial determination of health (strategies and approaches used by the private sector to promote products and choices that are harmful to health (kickbusch et al., 2016), a need for healthy public policies, and the responsibility of the state to provide decent living standards for its population. social policies must be consistent, promote work conditions with acceptable hours, adequate payment to provide for the necessities of life, social protection during hard times, education, health, leisure, culture, sustainable food, urban mobility, among other aspects encompassed by the social determinants of health (buss et al., 2020) to broaden their coverage and impact amidst a whirlwind of individual accountability and state abandonment. conclusion beyond binary oppositions or cause-effect relationships, we have attempted to analyze the practice field of hp in a primary care setting from a broader perspective, in which the historical conditions of society influence the shaping of practices in a health system. the narratives of the interviewed workers show a heterogeneous field of hp practices, established through the circulation of different discourses, knowledge, and powers. at the same time, the correlation of forces in this setting, or even how such knowledge-power relationships are organized, produced, and produce the field of hp practices in primary care. on the one hand, discourses reinforce and align with the neoliberal governmentality; on the other, we find those that represent counter-conducts to the dominant perspective in the field of hp, mainly established as a biopolitical strategy, inscribed in the neoliberal rationality. ihtp, 2(3), 298-309, 2022 cc by-nc-nd 4.0 issn 2563-9269 307 according to the foucauldian perspective, we highlight this study’s transience as historical events, which led to the emergence of the identified setting, are ongoing. they build new conformations as they change discourses and the correlations of forces in the health field and society. thus, the power of the results presented here is the identification of current discourses, unveiling some tensions, possibilities, and limitations to the health promotion of individuals and communities attended to by primary care services. we can conclude that the hp services held in primary care depend on intersectoral dimensions and actions taken in the macrostructure of the country and globally. the principles of hp’s technical-political framework are more necessary than ever: the reaffirmation of health as a right; the repudiation of social inequalities; the need for a new international economic order; the responsibility of governments for the health of their citizens; and the right of the population to participate in health decisions. we also highlight that, even with limitations arising from the socioeconomic structure and the lack of healthy public policies, the health promotion practices held in the primary care services in our research represent a significant dimension of care in their communities. besides this, we should note the creativity and commitment of workers who, despite lacking resources and personnel, build receptive, powerful, and productive spaces for health promotion in primary care services. so, what now? health promotion is a polysemic concept, whose theoretical-methodological and practical approach may vary with the rationality in which it is inscribed. we could say that the main approaches to operating hp focus mainly on changing behaviors and lifestyles and, to a lesser extent, the social determinants of health. this paper presents the hp field with analyses of a specific phc scenario, in which health promotion practices are implemented. through analyses based on michel foucault’s post-structuralist framework, we could affirm that in the hegemony of its practices, hp establishes itself as a biopolitical strategy of control over bodies and, consequently, population control. in opposition, but in a limited way, some hp practices assume the character of resistance and counter-conduct to hp practices aligned with neoliberal governmentality. thus, our paper shows that the field of hp consists of an arena in which knowledge and power are continuously activated through health practices. although hp practices aligned with neoliberal governmentality are hegemonic and have greater legitimacy, we demonstrated how some of these practices may be less potent to produce health from an expanded perspective. on the other hand, hp practices that are marginal in this field of power-knowledge may represent more capacity to produce an improvement in people’s lives, so they could be stimulated and gain more prominence in the context of health policies. references brasil. câmara dos deputados. (1988). constituição da república federativa do brasil de 1988. http://www.planalto.gov.br/ccivil_03/constitui cao/constituicao.htm brasil (1990a). lei nº 8.080, de 19 de setembro de 1990. dispõe sobre as condições para a promoção, proteção e recuperação da saúde, a organização e o funcionamento dos serviços correspondentes e dá outras providências. http://www.planalto.gov.br/ccivil_03/leis/l808 0.htm. brasil. (1990b) lei nº 8.142, de 28 de dezembro de 1990. dispõe sobre a participação da comunidade na gestão do sistema único de saúde (sus) e sobre as transferências intergovernamentais de recursos financeiros na área da saúde e dá outras providências. 1990. http://www.planalto.gov.br/ccivil_03/leis/l81 42.htm brasil (2006). portaria nº 687, de 30 de março de 2006. institui a política nacional de promoção da saúde. http://bvsms.saude.gov.br/bvs/saudelegis/gm /2006/prt0687_30_03_2006.html. brasil. (2012). resolução 466, de 12 de dezembro de 2012. aprova as diretrizes e normas regulamentadoras de pesquisas envolvendo seres humanos. brasília: diário oficial da união brasil. (2014). portaria nº 2.426, de 11 de novembro de 2014. redefine a política nacional de promoção da saúde. http://www.planalto.gov.br/ccivil_03/constituicao/constituicao.htm http://www.planalto.gov.br/ccivil_03/constituicao/constituicao.htm http://www.planalto.gov.br/ccivil_03/leis/l8080.htm http://www.planalto.gov.br/ccivil_03/leis/l8080.htm http://www.planalto.gov.br/ccivil_03/leis/l8142.htm http://www.planalto.gov.br/ccivil_03/leis/l8142.htm http://bvsms.saude.gov.br/bvs/saudelegis/gm/2006/prt0687_30_03_2006.html http://bvsms.saude.gov.br/bvs/saudelegis/gm/2006/prt0687_30_03_2006.html ihtp, 2(3), 298-309, 2022 cc by-nc-nd 4.0 issn 2563-9269 308 https://bvsms.saude.gov.br/bvs/saudelegis/g m/2014/prt2446_11_11_2014.html brasil. (2017a). portaria nº 2.436, de 21 de setembro de 2017. institui a política nacional da atenção básica. https://bvsms.saude.gov.br/bvs/saudelegis/g m/2017/prt2436_22_09_2017.html brasil. (2017b). portaria interministerial nº 1.055, de 25 de abril de 2017. institui o programa saúde na escola (pse). 2017. http://bvsms.saude.gov.br/bvs/saudelegis/g m/2017/pri1055_26_04_2017.html brasil. (2006b). portaria nº 971, de 3 de maio de 2006. aprova a política de práticas integrativas e complementares (pnpic) no sistema único de saúde. https://bvsms.saude.gov.br/bvs/saudelegis/ gm/2006/prt0971_03_05_2006.html buss, p.m., hartz, z.m.a., pinto, l.f., & rocha, c.m.f. (2020) promoção da saúde e qualidade de vida: uma perspectiva histórica ao longo dos últimos 40 anos (1980-2020). ciencia saude coletiva, 25(12). http://dx.doi.org/10.1590/1413812320202512.15902020 castiel, l.d., xavier, c., & moraes, d.r. (2016) a procura de um mundo melhor: apontamentos sobre o cinismo em saúde. fiocruz carvalho, s.r. (2020) nosso “futuro psiquiátrico” e a (bio)política da saúde mental: diálogos com nikolas rose (parte 4). interface comunicação saude educação,24(e190732). http://dx.doi.org/10.1590/interface.190732 fleury, s. (2009). reforma sanitária brasileira: dilemas entre o instituinte e o instituído. ciênc saúde coletiva, 14(3): 743-752. foucault, m. (2014). microfísica do poder. martins fontes. foucault, m. (2008a). segurança, território e população. martins fontes foucault, m. (2008b). o nascimento da biopolítica. martins fontes gallo, s. (2017). biopolítica e subjetividade: resistência? educar em revista, 66;77-94. guibu, i.a., moraes, j.c., guerra junior, a.a., costa, e.a., acurcio, f.a., costa, k.s., karnikowski, o.m.s., leite, s.n., & álvares, j. (2017) características principais dos usuários dos serviços de atenção primária à saúde no brasil. revista saude publica,51(supl2). https://doi.org/10.11606/s15188787.2017051007070 kickbusch, i., allen, l., & franz, c. (2016) the commercial determinants of health. lancet glob health, 12(4). https://doi.org/10.1016/s2214109x(16)30217-0 mattioni, f.c., nakata, p.t., dresch, l.c., rollo, r., bittencourt, l.s.b., & rocha, c.m.f. (2021) health promotion practices and michel foucault: a scoping review. american journal health promotion, 35(6):845-52. https://doi.org/10.1177/0890117121989222 merhy, e.e. (2007). saúde: a cartografia do trabalho vivo. hucitec nabarro, m., nitschke, r.g., & tafner, d.p.o.v. (2020) imaginario de familias de escolares acerca de la promoción de la salud en el cotidiano. texto contexto enfermagem, 29(spe):e20190274. https://doi.org/10.1590/1980-265x-tce2019-0274 rose, n. (2011) biopolítica molecular, ética somática e o espírito do biocapital. in: santos, l.h.s; ribeiro, p.r.c. corpo, gênero e sexualidade: instâncias e práticas de produção nas políticas da própria vida. rio grande, rs (br): furg. silva, m.v.s., miranda, g.b.n., & andrade, m.a. (2014) sentidos atribuídos à integralidade: entre o que é preconizado e vivido na equipe multidisciplinar. interface comunicação saude educação. https://doi.org/10.1590/180757622016.0420 silva, l.s.& natal, s. (2019) residência multiprofissional em saúde: análise da implantação de dois programas pela universidade federal de santa catarina, brasil. trabalho educação saúde,17(3). https://doi.org/10.1590/19817746-sol00220 trilico, m.l.c., oliveira, g.r.k., yuko, m., & priolo, sm. (2015) discursos masculinos sobre prevenção e promoção da saúde do homem. trabalho educação saude,13(2). https://doi.org/10.1590/1981-7746sip00015 vinuto j. (2012) a amostragem em bola de neve na pesquisa qualitativa: um debate em aberto. tematicas,44(23), 2003-2020 https://doi.org/10.20396/tematicas.v22i44.10 977 https://bvsms.saude.gov.br/bvs/saudelegis/gm/2014/prt2446_11_11_2014.html https://bvsms.saude.gov.br/bvs/saudelegis/gm/2014/prt2446_11_11_2014.html https://bvsms.saude.gov.br/bvs/saudelegis/gm/2017/prt2436_22_09_2017.html https://bvsms.saude.gov.br/bvs/saudelegis/gm/2017/prt2436_22_09_2017.html http://bvsms.saude.gov.br/bvs/saudelegis/gm/2017/pri1055_26_04_2017.html http://bvsms.saude.gov.br/bvs/saudelegis/gm/2017/pri1055_26_04_2017.html https://bvsms.saude.gov.br/bvs/saudelegis/gm/2006/prt0971_03_05_2006.html https://bvsms.saude.gov.br/bvs/saudelegis/gm/2006/prt0971_03_05_2006.html http://dx.doi.org/10.1590/1413-812320202512.15902020 http://dx.doi.org/10.1590/1413-812320202512.15902020 http://dx.doi.org/10.1590/interface.190732 https://doi.org/10.11606/s1518-8787.2017051007070 https://doi.org/10.11606/s1518-8787.2017051007070 https://doi.org/10.1016/s2214-109x(16)30217-0 https://doi.org/10.1016/s2214-109x(16)30217-0 https://doi.org/10.1177/0890117121989222 https://doi.org/10.1590/1980-265x-tce-2019-0274 https://doi.org/10.1590/1980-265x-tce-2019-0274 https://doi.org/10.1590/1807-57622016.0420 https://doi.org/10.1590/1807-57622016.0420 https://doi.org/10.1590/1981-7746-sol00220 https://doi.org/10.1590/1981-7746-sol00220 https://doi.org/10.1590/1981-7746-sip00015 https://doi.org/10.1590/1981-7746-sip00015 https://doi.org/10.20396/tematicas.v22i44.10977 https://doi.org/10.20396/tematicas.v22i44.10977 ihtp, 2(3), 298-309, 2022 cc by-nc-nd 4.0 issn 2563-9269 309 world health organization. ottawa charter. (1986). https://www.opas.org.br/carta-deottawa https://www.opas.org.br/carta-de-ottawa https://www.opas.org.br/carta-de-ottawa 106 ihtp, 2(3), si: 106-123, 2022 cc by-nc-nd 4.0 issn 2563-9269 planetary health action framework: a case study special issue: planetary health enrique falceto de barros1, tatiana souza de camargo1, airton tetelbom stein2, alan abelsohn3, diogo onofre de souza1 1instituto de ciências básicas da saúde, universidade federal do rio grande do sul, porto alegre, brazil; 2public health department, universidade federal ciências da saúde de porto alegre, porto alegre, brazil; 3clinical public health division, university of toronto, toronto, canada corresponding author: e. f. de barros (enriquefbarros@gmail.com) abstract planetary health (ph) action is urgent to avoid the collapse of earth's systems that sustain human health. ph care has been proposed as an approach to improve health equity and reduce healthcare´s ecological footprint. this paper presents the conceptual framework of patient-centered ph care as essential for ph action at the community level. we examine and reflect on one primary care clinical case through 8 lenses: 1) actor-network theory, 2) evidencebased medicine, 3) patient-centered clinical method; 4) principles of primary care, 5) proposed new primary care derivate principle of ph care, 6) the wonca´s (world organization of family doctors) core competencies tree, 7) wonca´s curriculum, and 8) sustainable development goal 3. this case offers insights into functions of primary care that mitigate, adapt and build resilience to the challenges of climate emergency and anthropocene. it “connectsthe-dots” to propose a new identity of primary care, elaborate a blueprint for patient-centered ph care and a roadmap for ph action at the community level. keywords climate change, patient centered clinical method, planetary health, primary care introduction planetary health (ph) action is urgent to avoid the collapse of earth's systems that sustain human health and our civilizations. the anthropocene (whitmee, et al 2015), the epoch of humanity´s marvelous achievements in arts, sciences, life expectancy, among others, is also the age of the acceleration of population and disruption of planetary systems, driven by unrestrained, hyper consumerist economic and epistemic systems. thus, resulting in climate change, ocean acidification, widespread pollution including biogeochemical flows, pesticides, air pollution, and microplastics, 6th mass species extinction, emerging zoonotic diseases, widespread antibiotic resistance, and stratospheric ozone depletion. we are operating on the brink of catastrophe, which could reverse decades of improvement in child health, life expectancy and poverty eradication (whitmee, et al 2015). however, there is much room for optimism if our civilizations' collective wisdom from western, eastern, origin and indigenous peoples join in collective ph action. humankind needs to urgently invest in solutions based on imagination, knowledge, and implementation of strategies that improve health equity, protect and regenerate natural ecosystems that sustain our human civilizations (whitmee, et al 2015). many macro-strategies can potentially improve health at the macro-populational level with co-benefits for the planet, such as moving away from fossil fuels. ph care has been proposed as a solution to improve health equity, a core goal of ph actions, while reducing healthcare system´s ecological footprint. one acclaimed roadmap for health equity is high quality primary care, which should be the basis 107 ihtp, 2(3), si: 106-123, 2022 cc by-nc-nd 4.0 issn 2563-9269 for universal health coverage within directives of the 3rd sustainable development goal (sdg3) (united nations, 2022). this mission is enough to inscribe primary care in the blueprint of the ph vision. beyond a pillar for sdg3, primary care intrinsically plays unique roles in mitigation, adaptation, and resilience to the climate emergency and anthropocene challenges (haines & floss, 2021) which deserve our careful attention. a closer look may give new insights for patient-planet win-win strategies and smarter innovation for ph action. a vanguard vision of planetary health care was compared to a renewed alma-ata 2.0 (guinto, 2018). alma-ata was a landmark global health policy document that reinforced health as a fundamental human right and prescribed primary care as a vital strategy toward achieving ‘health for all.’ ph care has also been articulated as a framework for sustainable health systems, with important tasks for primary care (macneill, 2021). moreover, ph care has been proposed as a new derivate principle of primary care (barros et al, 2022). these complementary visions look at primary care from a macro-scale, supranational level, and top-down approach of how to secure the progress of human health equity with environmentally friendly healthcare systems. they highlight the need for primary care to have ph action at the community level. therefore, we need the supportive perspective of primary care practitioners from bottom-up, from the micro to the macroscale and from the patient to the planet, to identify gaps, weaknesses, challenges, and opportunities of these convergent frameworks. primary care providers have been summoned to ph action (iacobucci, 2019). these clinicians have pragmatic opportunities for patient-planetary health co-benefits (redvers, 2021) for mitigation, adaptation, and resilience to climate change and other anthropocene challenges. some of these examples of mitigation are lifestyle recommendations towards active transportation (fewer cars and more walking/biking), a planetary health diet (less red meat and more plant-based), reduced overdiagnosis and overtreatment, and reduction of deforestation (jones, 2020). examples of adaptation include advising patients how to prepare the indoor environment for climate extremes and build primary care infrastructure to underprivileged communities. examples of resilience are advising patients to avoid diuretic drug induced dehydration during heat waves and treating the more frequent waves of new pandemics (such as cases of flu, covid, and antibiotic resistance) (xie et al, 2018). these characteristics, along its celebrated capacity to maximize health while minimizing environmental damage, explain why it has been called the “green medicine” (wonca europe, 2020). in this conceptual paper, we examine a primary care clinical case which illustrates how a clinical encounter has intrinsic patient-planetary health cobenefits on mitigation, adaptation, and resilience to challenges of the anthropocene. we examined this case through eight lenses to conceptualize a blueprint for patient-centered ph care and bring forth a new identity for primary care. these 8 lenses help make the case for this paper's central argument: primary care is intrinsically patient-centered ph care and is essential for ph action at the community level. in the same spirit of starfield´s description of the primary care principles, patient-centered ph care is a characteristic of high-quality primary care, and need not be seen as a new recommendation, but rather as an underlying function of primary care providers. the merit of starfield´s framework was to depict a blueprint for higher-quality primary care and a roadmap for investments to improve healthcare outcomes. it clearly defined an identity and expanded the recognition of primary care providers to the frontstage of healthcare systems. in this same spirit, this patient-centered ph care framework is not to change what primary care providers do, nor is it supposed to be the “last straw on the back” of overburdened clinicians. this framework is more about “connecting-the-dots” of current primary care practice, to reveal the patient-centered ph care blueprint, and to offer a road map for urgent investments for better healthcare outcomes. this concept helps elucidate the current role of primary care providers and may stimulate the inclusion of a one minute for the planet (omfp) in the clinical encounter as shown in the case report. conceptual framework 108 ihtp, 2(3), si: 106-123, 2022 cc by-nc-nd 4.0 issn 2563-9269 the purpose of this conceptual discussion is to present the conceptual framework of patientcentered ph care as essential for ph action at the community level. this conceptual discussion is based on reflections of the experience of primary care clinical practice. it is a reflective analysis of a clinical case report. it describes and analyzes a clinical case of patientcentered ph care. this investigation will use 8 lenses from primary care´s philosophy, methods, techniques, and education. these 8 lenses will examine the why, what, and how the patientcentered ph care concept is applied from the patient scale to the ph scale. the 8 lenses are: 1. actor-network theory tool to study a phenomenon by following the actors (both human and non-human); that is, by observing and describing how they act when associating in networks (latour, 2007). 2. evidence-based medicine integration between the realms of patient values, individual clinical expertise, and best external evidence (akobeng, 2005). 3. patient-centered clinical method four-component conceptual framework: a) exploring health, disease, and the illness experience; b) understanding the whole person; c) finding common ground, and d) enhancing the patientclinician relationship (ryan, 2019). 4. four core principles of primary care a) first contact/access, b) person-focused continuity of care, c) comprehensiveness, and d) coordination. other three derivate principles are: family orientation, cultural competency and community orientation (barros, 2021; starfield, 2012). 5. primary care derivate principle acknowledgment of the interconnections between human and non-humans (living and nonliving) within nature, and therefore, the interdependency between patient care from community to planetary level and vice-versa (barros, 2021). 6. wonca (figure 1) essential characteristics and competencies of the discipline (hummers-pradier et al, 2009). 7. wonca three dimension curriculum (figure 2) a) knowing essential concepts and tools; b) comprehending the 4 core principles of primary care; and c) applying skills appropriate to the general practice consultation (simmenroth et al, 2020). 8. the sustainable development goal (united nations, 2022) ethics approval was not acquired, as this is a fictitious case report carefully based on the authors´ clinical experience. reflective analysis this clinical encounter happened in the summer of 2022, in são martinho, a rural town (around 8,000 inhabitants) in southern brazil. ana, 23 years old, brought her 4-year-old daughter bárbara, with a rash and fever, to see her family doctor fernando. bárbara was diagnosed with dengue fever based on the clinical-epidemiological presentation. after a quick point-of-care uptodate review (an evidence-based medicine tool), fernando prescribed hydration, acetaminophen as needed, and avoidance of non-steroid anti-inflammatories to bárbara. fernando reassured ana that barbara would be ok; and agreed they would return for an in-person examination or a whatsapp (smartphone messaging app) check-up if barbara felt better. in the same encounter, ana complained of shortness of breath associated with wheezing since the family had covid-19 three months before. fernando diagnosed asthma aggravated by long 109 ihtp, 2(3), si: 106-123, 2022 cc by-nc-nd 4.0 issn 2563-9269 covid. ana was prescribed evidence-based treatment with formoterol budesonide dry powder inhaler (dpi) as needed. ana was counseled about how to use the medication, to avoid triggers such as air pollution (the community uses wood stoves) and was given a medical certificate to avoid chemical exposure (she works in a shoe sweat-shop factory). fernando and ana discussed whether it would be necessary to order chest-x ray, blood tests, and spirometry, and both agreed it would not be needed at the present time. ana was instructed to return if she did not get better. ana seemed satisfied with the shared-decision making and was ready to go home. however, fernando, inspired by the wonca call for planetary health action, felt compelled to offer one minute for the planet (omfp) to ana. in this new period of the clinical encounter, fernando explained that dengue in barbara was caused by the vector mosquito that “likes” climate change (excessive rain and warming) and trash (plastics that retain water for mosquito's procreation). fernando explained that our future health, and especially barbara´s, could be improved by avoiding fossil fuels and reducing the burning of forests. fernando asked whether ana could consider biking or walking to her job, as that is associated with a significant reduction in non-communicable diseases, but she said she needed to drive her daughter to kindergarten. fernando also discussed how the reduction of excessive industrialized and red meat consumption would likely help prevent future cardiovascular and cancer diseases, while also reducing the pressure of cattle on amazon deforestation. the catchphrase was addressed in a culturally sensitive manner confirming that “we need to protect our forests from burning and polluting, as you know our planet is on fire”, followed by “it's good for you and the planet”. ana said she was reducing red meat already (probably because brazilians recently lost much purchase power for red meat). nonetheless, ana´s nonverbal expression seemed to convey she was impressed by her doctor´s remarks. discussion first lens: actor-network theory the covid-19 pandemic has exposed the insufficiency of the “almighty science” and its “magic bullet” narrative to the public. it exemplifies the shortcomings of science; that is, the process of science is mostly reductionist, full of controversies, stakeholders have different legitimate scientific perspectives, and science alone cannot solve the problems because solutions need to be implemented according to people's values and expectations. in summary, the covid-!9 pandemic is highly complex, dynamic, and interdependent. this general perception opens room for innovative tools to tackle systems change towards more health equity. in a similar way, the challenge that ph presents needs systemic thinking and complex tools to deal with the problems ahead. “in opposition to reduction, complexity requires that one tries to comprehend the relations between the whole and the parts. the knowledge of the parts is not enough, the knowledge of the whole as a whole is not enough … thus, the principle of reduction is substituted by a principle that conceives the relation of whole-part mutual implication. the principle of disjunction, of separation (between objects, between disciplines, between notions, between subject and object of knowledge), should be substituted by a principle that maintains the distinction, but that tries to establish the relation” (faerron, 2022). many healthcare providers may not even perceive any interdependencies between bárbara & ana and ph. this is no surprise as the mainstream biomedical model stimulates excessive fragmentation to the point of losing sight of the whole patient among the excessive exams and reductionism to a part of the body (greene & loscalzo 2017). part of the challenge of complex problems is that you may not even recognize that there is a problem in the first place. a brazilian anecdote teaches that “unless you know what you are looking for, you will not find it when you see it.” hence, primary care providers need a framework to start visualizing the complex problem. actor-network theory has been used as an educational tool to highlight the complexity of clinical cases under a ph perspective and allows us to connect-the-dots. this method stimulates observers to fit the part within the whole and the whole within the parts. technically, actor-network theory is an 110 ihtp, 2(3), si: 106-123, 2022 cc by-nc-nd 4.0 issn 2563-9269 epistemological tool to look for human and nonhuman actors interacting to form a network of interdependencies that goes beyond the simplified mechanistic cause and effect biomedical model, to understand and intervene in disease. although intuitive to many, the why, what and how's of patientcentered ph care may not be easily described in scientific terms. actor-network theory helps to clarify and find common language between healthcare providers (barros & camargo, 2022). figure 3 is a visual representation of patient centered ph care as imagined by fernando´s as a heuristic picture and starting point for patientcentered ph care. the balloons symbolize key elements in the network, but sizes do not reflect relevance. colors indicate somewhat independent nodes. the lines represent interdependencies, not necessarily causal. the entanglement of balloons and lines is intended to highlight the dynamic complexity of this system but does not represent all interdependencies. second lens: evidence-based medicine stronger evidence-based medicine leads to better healthcare outcomes, reduced overdiagnosis and overtreatment. hence, evidence-based medicine has lower ecological externalities and offers better costbenefit. all primary care providers who strive to follow evidence-based medicine already provide an intrinsic and passive positive effect on planetary health, as most of the carbon footprint of general practitioners comes from prescribing (bansal & blashki, 2020). in our case study, fernando appropriately diagnosed dengue and long covid exacerbated asthma, used a point-of-care evidence-based medicine tool to confirm the best diagnostic and treatment strategy, and adapted it to ana & bárbara´s context. the prescription of formoterol budesonide dry powder inhaler, instead of an albuterol metered dose inhaler, is an example of an evidence-based recommendation which improves health and avoids greenhouse gas propellants, substantially reducing ghg emissions (bansal & blashki, 2020). the trustful relationship between ana and fernando enabled evidence-based medicine to protect from overuse, and avoid antibiotic prescription, or emergency-room visits. evidence-based medicine, in synergy with ph sciences, should be a cornerstone for the evolving field of “patient-planetary health co-benefits prescribing” (redvers, 2021). in our case study, we see two forms of patient-planetary health co-benefits prescribing. in the first period of the clinical encounter, the practice of evidence-based medicine had a secondary practical value of optimizing resources and reducing environmental externalities. evidence-based medicine is still an underused framework to check and balance medical–industrial complex overuse. “[...] in both low-income and high-income nations, ineffective, scientifically unwarranted care seems to account for close to about one-quarter to one-third of total volume for many procedures” (berwick, 2017) overuse of procedures and drugs generates more unnecessary and harmful healthcare interventions, hyper consumerism, overexploitation of resources, and pollution of soil, water, and air; on the other hand, it drains resources that should be invested into underused healthcare services. the evidence-based medicine approach is the authoritative lens that reveals that fragmented healthcare models and a hospitalo-centric approach, such as in the us healthcare system may have higher rates of iatrogenic deaths, while also being more energy intensive (makary & daniel, 2016; solomon & larocque, 2019). fernando felt safe helping bárbara avoid an emergency visit, as evidence shows mild-moderate dengue can be handled at the community level. evidence-based medicine is the cornerstone to determining which patient may get better treatment in primary care or at the hospital. it has been stated that “any patient who is treated in an expensive, carbon-intensive hospital when they could be equally well managed in the community or at home is failing the patient, the system, and the planet” (pencheon & wight, 2020). a 5% increase in funds for primary care across low-income and middle-income countries 111 ihtp, 2(3), si: 106-123, 2022 cc by-nc-nd 4.0 issn 2563-9269 could save up to 60 million lives by 2030 (haines & floss, 2021). if we are to improve health equity worldwide and reduce the healthcare ecological footprint, evidence-based primary care is essential. a typical clinical encounter would end with treatment and follow-up recommendations. however, following calls to act on planetary health, fernando proceeded to a second part of the encounter to explore omfp with ana. fernando educated ana about the environmental and social determinants of health and encouraged her to consider active transport and reducing red meat as a means of collaborating to reduce the ecological footprint. (xie et al, 2018) in this second period of the encounter, omfp implements “patient-planetary health co-benefits prescribing”, where the clinician exerted explicit planetary and climate activism, while not directly linked to the primary objective of the consultation (bárbara´s illness). in this case dengue was a proxy for activism. the omfp has to be used with moderation, under a patient-centered ph care framework. there is a fine line between recommending omfp and proselytism. this could be an interesting field of research, to answer such questions as how and when to apply it, investigate whether it is effective in changing beliefs and attitudes, and whether it is costeffective. evidence-based medicine and clinical guidelines should consider explicitly incorporating ph care and could incorporate omfp. herrmann and colleagues (2022) reasoned: “all medical associations and organizations who publish medical guidelines should include a strategy that systematically addresses planetary health issues in their guidelines. straightforward reporting of environmental impacts (e.g., greenhouse gas emissions) of diagnostic and therapeutic procedures and reporting on lifecycle assessments of medical products; particularly provide guidance if environmental impacts differ between clinically equally effective procedures” if such recommendations are followed, patientplanetary health co-benefits prescriptions would become more scientifically robust and more widely disseminated, and omfp would be more appropriately and widely practiced. third lens: patient-centered clinical method macneil and colleagues state that “patientcentered care is central to transforming the culture of healthcare towards resource stewardship, and fewer environmental externalities, to prioritize health and wellbeing above diagnosis (the desire to know) and cure (the absence of disease)” (macneill et al, 2021). the patient-centered clinical method is a technique to explore objective and subjective aspects of the patient-clinician encounter and of the presenting problem, to know the context of the patient, and to build a common place for mutual understanding of the problem. the patient-centered clinical method has been shown to improve health outcomes (ryan et al, 2019) of note, the patient-centered clinical method has been promoted as a bioethical tool to promote patient autonomy. however, as the term patient may imply passivity, many have used person-centered care instead. in portuguese the patient-centered clinical method was translated into person-centered clinical method (método clínico centrado na pessoa), to imply and reinforce the autonomy of the person in the consultation. for the sake of clarity and to facilitate language concordance with the evidencebased medicine method, the patient-centered clinical method, and the term patient-planetary health co-benefits prescription, the authors adopt the term patient throughout the text. the patient-centered clinical method is crucial to the evidence-based medicine dimension of patient values & expectations, by finding common ground for best-tailored treatments, to avoid unnecessary investigations, overdiagnosis, and overtreatment. this is the intrinsic and passive positive value of combined evidence-based medicine and patientcentered clinical method for patient-planetary health co-benefits. this method was effective with ana due to good primary care principles especially continuity of care. as professor martin marshall, chair of the royal college of general practitioners said: “if relationships were a drug, 112 ihtp, 2(3), si: 106-123, 2022 cc by-nc-nd 4.0 issn 2563-9269 guideline developers would mandate their use.” (morland, 2022) continuity of care, and a good rapport, were key to making sure that neither fernando nor ana felt omfp as proselytism, but as caring. this subjective feeling is a gray line between caring and indoctrination. despite calls to action for health-professional involvement in mitigation efforts, there is evidence demonstrating that clinicians may not feel comfortable advising clients about climate change impacts and health (64% percent of primary care physicians in one us state believe climate change was affecting their patients' health, whereas only 17% were comfortable counseling patients about climate change and health) (redvers, 2021). in the future, as planetary health challenges become increasingly disturbing to individuals, there may be a shift in perception of interdependencies between human and planetary health. this is a trend that may be contributing to the increasing ecoanxiety. if this trend continues, the patient-centered clinical method may need to explore the individual perceptions about the dichotomy between the individual and planet, and to optimize patientplanetary health co-benefits prescription and omfp with a special focus in mental health. fourth lens: primary care core and derivate principles barbara starfield described four attributes, or principles of primary care: 1) first contact/access, 2) continuity of care, 3) comprehensiveness, and 4) coordination. later she described other three derivate attributes: 5) family orientation, 6) cultural competency and 7) community orientation (figure 4) (barros et al, 2021). primary care principles were essential for ana & bárbara´s community to withstand the devastating waves of covid-19. hospitals were overwhelmed and people were treated with oxygen concentrators in their homes, managed by primary care providers. fernando explicitly advised the mayor and the health secretary to buy this life saving oxygen concentrators before the first wave of covid. deaths would be higher without the resilience of the community´s primary care. the epidemic of dengue was also softened by the resilience of the primary care services in their town. fernando worked in a dengue epidemic in rio de janeiro in 2008 where a fragmented and hospital centric system collapsed with 55 deaths, while the neighboring niteroi city had no deaths, due to its advanced primary care services adaptation (primary care teams blocking mosquito propagation) and resilience (early treatment in the community)s) despite a gap of high quality evidence, it is likely that communities served by high quality primary care will be better adapted and have more resilience to emerging zoonotic diseases, climate-extremes, and other environmental health hazards. hummerspradier and colleagues (2009) highlight that: “the strength of a country’s primary care system is inversely associated with all-cause mortality, allcause premature mortality and cause-specific premature mortality from asthma and bronchitis, emphysema and pneumonia, cardiovascular disease and heart disease. strong primary care systems and practice characteristics, such as geographic regulation, continuity of care over time, coordination and community orientation are correlated with improved population health, and primary care (in contrast to specialist care) is associated with a more equitable distribution of health in populations. a gatekeeper role of the gp is seen to be an important cost-control measure and prevents harm due to unnecessary hospitalization and over-investigation” ana and her family´s primary care services have good core and derivate principles. good access and comprehensive services open the doors for encounters, care situations, and opportunities for a trustful patient-doctor relationship that has positive feedback with continuity of care. good coordination ensures coherent and satisfactory use of resources within primary care, guarantees more prudent access to specialists, certificates for occupational health related problems and legal conditions, social prescribing, avoids ineffective care, and allows for nudging omfp. the core principles of primary care worked well for ana and her family. of note, access was facilitated to ana by offering a virtual follow up appointment, which has been praised as environment friendly. this 113 ihtp, 2(3), si: 106-123, 2022 cc by-nc-nd 4.0 issn 2563-9269 trustful context leads to the derivate principle of family orientation and helps to incorporate her culture and community, which are always in the background of the consultation, making common ground not only an abstraction. with continuity of care, every principle of primary care interdependently and positively feeds back on each other, making the patient-centered clinical method flow smoothly. again, knowing the patient´s context is decisive (greene & loscalzo, 2017) because in primary care many times the “postal-code is more important than the genetic-code”. these good primary care principles and the patient-centered clinical method help explain how fernando and ana reached a satisfactory rapport. the center of the consultation moved from a stagnant “disease” from the doctor´s biomedical and disease perspective into ana´s notion of “illness”, and dynamically involving her family, culture, and community in the consultation. fernando felt satisfied with this holistic patient-doctor encounter. within this context, fernando felt it was appropriate to use omfp. this encounter illustrates a patientcentered ph care framework, (4) where primary care actively promoted climate change mitigation. fifth lens: the proposed primary care derivate principle of planetary health care primary care approaches ill health by caring and intervening not only for patients but also for their families, communities, and societies. today in the era of ph, this commitment must be extended to include the care for the proximal and distal ecological systems that sustain humanity's health. the declaration made by the world organization of family doctors (wonca) called for action on ph (iacobucci, 2019). to encompass this new role, it is time to consider adding an eighth attribute to starfield’s primary care framework: planetary health care (figure 4). ph care is underpinned by key ph dimensions such as interconnection within nature, equity and social justice, systems and complexity thinking, acknowledgment of the state of health in the anthropocene, and movement building and systems change. ana & barbara´s health was affected by covid-19 and dengue, which are direct impacts of planetary ill health. their family and community have been hard hit by covid-19, as it caused widespread deaths, long covid, disrupted health care services, massive unemployment, and hunger in brazil. this context has implications to all dimensions of primary care principles. as exposed above, primary health care was essential for their communities' resilience. another anthropogenic challenge to ana´s community, that has had little attention from the ph academic and social movement, is stratospheric ozone depletion by cfcs. it is worse over the south pole and reaches ana´s community. the resultant increase in uv radiation absorption, has increased melanoma deaths among ana´s neighbors, majorly white-skinned family farmers in the past decade. fernando has personally treated hundreds of nonmelanoma skin cancers and excised more than a dozen melanoma lesions. the primary care response in ana & bárbara´s community to covid-19, dengue, and the stratospheric ozone depletion exemplifies improved community resilience by primary care providers. wonca president dr li said, about the covid-19 response, that family doctors are “the first in, the last out”. primary care clinicians are already face-to-face with planetary health challenges, and to embrace the framework principle of planetary health care will make it easier to define the problems, and coordinate and optimize responses. another aspect of ph care is ensuring that healthcare does not contribute to the planetary crisis through its own ecological footprint. it is estimated that the combined healthcare systems of all countries generate 4.4% of the world’s total greenhouse gasses. if the healthcare system was a country, it would be the fifth largest emitting nation. beyond carbon emissions, the healthcare sector also contributes to other forms of environmental pollution. high quality primary care maximizes health equity while practicing the principle of ‘do no harm’ not just to patients but also to the planet. hence, primary care must be recognized and strengthened worldwide as a cornerstone of climate and planetary-smart healthcare. 114 ihtp, 2(3), si: 106-123, 2022 cc by-nc-nd 4.0 issn 2563-9269 ph care also intensifies primary care advocacy around disease prevention and health promotion. this strategy will not only contribute to the achievement of sustainable development goal 3 but will also reduce the demand for health services and eventually reduce healthcare emissions. routine evidence-based medicine and patient-centered clinical method inside the clinic optimize prevention and treatment, while intrinsically generating patientplanetary health co-benefits. “a sustainable healthcare system should match the type and intensity of care provided to the problem. this includes adequately funding primary, community, and long-term care. insufficient primary care services for so-called ambulatory care sensitive conditions (eg, diabetes, hypertension, chronic obstructive pulmonary disease) result in avoidable hospital-based treatment and comprise 12% of emergency department visits in the usa, 15% in england, and 25% in canada. appropriate end-of-life care should involve discussions around prioritization of comfort and quality of life, and avoidance of futile treatments.” (macneill et al, 2021) ph care stimulates clinicians to interrogate the improductive epistemic dichotomy between patientplanet, and the unreasonable economic models that drive ph damage, to foster alternative blueprints for healthier patients and planet. one overlooked and powerful advocacy action, which can induce a healthier economy, is to push for implementation of the world health organization's green procurement for healthcare systems. in the same vein that primary care is founded on the right to health, ph care must be underpinned by a social movement guided by the principles of human rights and equity, recognizing that health is inextricably linked to the enjoyment of the right to a healthy environment. practitioners must be at the forefront of whole-of-society activism for ph care. sixth filter: wonca tree the wonca tree of core competencies and characteristics (figure 1) (hummers-pradier et al, 2009) is intended to be self-explanatory, and its depth goes beyond the scope of this paper. of note, it is highly correlated with evidence-based medicine, patient-centered care, and primary care principles. not surprisingly, ana and barbara´s case highlights many, if not all, of the wonca tree of core competencies and characteristics. again, evidencebased medicine, patient-centered care, primary care principles, and core competencies are all interdependent and have positive feedback among them. in this sense, wonca´s tree also has intrinsic ph care value. mcwhiney (2012), an eminent professor, described the family doctor as an “ecologist by nature”, underpinning the central argument of this paper. however, his use of “ecologist” had a more local and community environmental health concern. it could be argued that the function of this paper is to expand mcwhinney´s understanding of ecology to include ph care. currently, where pollution has no frontiers, the clinician must understand that proximal environmental problems are in fact consequences from distal global interdependencies of the anthropocene. primary care providers understand that it is not enough to treat downstream pollution and recognize its upstream challenges. the wonca tree does not have any explicit characteristics or “leafs” focused on ecology. however, the longstanding efforts by fernando´s health care team to monitor and exterminate larvae and to prevent dengue mosquitoes from harming ana and barbara´s community are clearly proximal environmental health interventions about responsibility for the community's health, and about health and well-being promotion (the 2nd leaf upper top-down on the right). motivated practitioners may want to expand well-being promotion beyond usual best practices, by role-modeling biking to work, greening the practice, etc. (bansal & blashki, 2022). we would suggest that the future wonca tree could incorporate branches with flowers and fruits for environmental health and ph care. other symptoms of our planetary ill health, belong to more spiritual and existential threats. eco-anxiety (anxiety about climate change and other ecological problems), and solastalgia (the grief of losing home environment), are already harming people. these issues will likely increasingly appear in clinicians’ offices. the first leaf in the bottom right of the wonca tree will deal with the existential crisis 115 ihtp, 2(3), si: 106-123, 2022 cc by-nc-nd 4.0 issn 2563-9269 related to down and upstream ph care. one way to deal with these problems is to find purpose, and perhaps nudging towards collective ph action could help. research on these existential crises could include assessing whether omfp prescribing ph action would reframe suffering. while robust evidence is still lacking, clinicians may consider exploring it within this dimension. seventh lens: wonca curriculum there have been many calls to include climate change and ph in medical curricula, although questions remain on how best to introduce them. one option would be to “apply a planetary health lens to all clinical subjects, actively looking for links between ecosystems and health” (moore, 2021). the family medicine curricula is ready and needs encouragement to include ph. the european academy of teachers in family medicine and general practice (wonca/euract) undergraduate curriculum (figure 2) is used here only to illustrate how primary care curricula may already contemplate evidence-based medicine, patientcentered care, primary care principles and the wonca tree. the primary care derivate principle of ph care would fit transversally within this curriculum, by recognizing that the methods and targets of the family practice are at the core of patient-centered ph care. teachers and students only need to “connectthe-dots'' (figure 2). ph care specifics could easily be inserted into the curriculum to familiarize the learner with the concept, for example i) the “knowing” dimension, could include environmental and social health determinants; ii) in the “comprehending” dimension, actor-network theory clinical case studies (like ana & bárbara´s) could be fun and easy to teach patientcentered ph care within the other primary care principles (barros, camargo, 2022); iii) in the “applying” dimension, explaining how evidencebased medicine reduces overtreatment, and how this improves health equity and reduces healthcare carbon-footprint would introduce these concepts to the learner. eighth lens: sustainable development goal #3: good health and well-being the 17 sustainable development goals (sdgs) constitute the united nations "shared blueprint for peace and prosperity for people and the planet, now and into the future" (2. united nations. department of economic and social affairs, 2022). these interdependent sdgs are: no poverty, zero hunger, good health and well-being, quality education, gender equality, clean water and sanitation, affordable and clean energy, decent work and economic growth, industry, innovation and infrastructure, reduced inequality, sustainable cities and communities, responsible consumption and production, climate action, life below water, life on land, peace, justice, and strong institutions, partnerships for the goals. the health goal (sdg 3) is broad: ensure healthy lives and promote well-being for all at all ages. the sdg declaration emphasizes that to achieve the overall health goal, we must achieve universal health coverage and access to quality health care. in our case study, sdg3 is seen in action through fernando´s effort to protect ana & bárbara´s health. furthermore, figure 1 suggests how sdgs are present, in an implicit way, entangled in ana & bárbara´s case. that is, achieving sustainable development targets will enable better patientcentered ph care to ana & bárbara. perhaps the most obvious aspect of the sdgs is the need for intersectoral partnerships; likewise, primary care providers can inspire community and ph intersectoral action. limitations of case study patient-centered ph care is an innovative framework with an urgent imperative to be integrated into primary care. we will discuss limitations that should be addressed by other primary care providers and academic investigators. the patient-centered ph care framework has been matured through many lectures and discussions with students and colleagues from many different healthcare and scientific perspectives. the framework is structured on recommendations from 116 ihtp, 2(3), si: 106-123, 2022 cc by-nc-nd 4.0 issn 2563-9269 wonca despite being intended for all primary care providers. as a writer suggested, “if you want to be universal, write about your village.” one notable limitation is that lenses 6 and 7 are nominally specific to family doctors/general practitioners, and although they can be applied to other primary care providers. the authors acknowledge there may be more appropriate frameworks to explicitly include all primary care providers. wonca´s definitions of lenses 6 and 7 were used because of the authors´ familiarity with the chosen frameworks. the same with the framework of evidence-based medicine, which is a method intended for all healthcare providers. we are not aware of but would prefer other equivalent robust and widespread models that would include explicitly all primary care clinicians. these 8 lenses are not meant to be a static model for the adequacy of patient-centered ph care and omfp, but a starting point for future conceptualization, research, and development. another important limitation is the assumption that fernandos´ primary care services are of adequate quality. the objective quality of primary care in a community is measured by the pcatool (primary care assessment tool), which quantifies the effectiveness of the primary care principles. (starfield, 2012) as fernando, the clinician in this case study, has not utilized the pcatool, the assumption of good quality is based on subjective experiences, such as subjective knowledge of international standards, and comparisons to other primary care services in brazil and abroad. an outstanding characteristic of fernando´s outpatient clinic is the interdisciplinary collaboration with nurses and community health workers. this is standard care in brazil´s public healthcare and improves all attributes of primary care. another weakness is the type of clinical condition. dengue and long covid, have both didactic advantages and disadvantages. dengue and sarscov2 relationship to planetary health is easy to demonstrate. the frailty is because many will have difficulty transposing the lessons from this case to other clinical conditions such as chronic noncommunicable diseases. the challenge of visualizing these interdependencies can be worked out with actor-network theory (barros & camargo, 2021). one recurrent criticism from colleagues and students is that it is futile to see the patient from the perspective of the upstream determinants of planetary health, and even more futile to expect that the patient-clinician interaction would have any positive impact on the planet. however, the answer is in the proposed framework of patient-centered ph care, which emphasizes that individual patients do suffer from harmful human-planet interactions, and that ph care, just as community care, does improve with benevolent collective action. examples, such as the montreal protocol to reverse ozone depletion, are abundant. every contribution matters. implications family doctors/general practitioners are obliged by the hippocratic oath to look to the planet from the perspective and values of the patient. additionally, the framework of patient-centered ph care implies that there may be no dichotomy between patient and planet, just as community and family dimensions are integral to good patient care. it is important to recognise interconnectedness between the part (patient) and the whole (planet), just as interconnection within nature and complex systems thinking takes the forefront in advanced earth and health sciences (greene & loscalzo, 2017). holistic care is the ability to dynamically connect-the-dots across silos in practice, a core competency of family doctors. ultimately, the proposed new primary care derivate principle of ph care may go beyond the notion of patient-planetary health co-benefits, which could sound to some like two different pathways running parallel to each other. instead, this proposed principle brings to light the scientific construct that the health of the patient-planet is entangled in a continuum. the end and the beginning of this entanglement depend on the cultural/cosmological perspective defined by the patient a fundament that primary care providers must respect. (redvers, 2021) this clinical case report utilized 8 lenses to connect-the-dots of patient-centered ph care. every lens offers a complementary perspective and 117 ihtp, 2(3), si: 106-123, 2022 cc by-nc-nd 4.0 issn 2563-9269 pathway to improve ph action in primary care, including suggestions for a research agenda. furthermore, these lenses depict the positive intrinsic and passive value of primary care principles and stimulate clinicians to meditate on how patientcentered ph care is emerging in their own practices, and already acting as a new primary care principle of ph care. formalization and acceptance of ph care as a new primary care derivate principle demands rigorous interdisciplinary research to delineate its position and relevance in primary care. presently, it is currently implied as good practice by wonca´s recognition of the climate emergency (wonca, 2019) and call for ph action (iacobucci, 2019). in the future, wonca may consider officialising ph care as the eighth primary care principle and foster a robust identity for the challenges of the climate emergency and anthropocene. primary care clinician’s self-awareness as champions of ph care at the community level may help to identify strengths, weaknesses, opportunities, and threats to advance the agenda of patientcentered ph care. there are still many unexplored potential areas for innovation such as the project in the tropical forest of borneo, where the humancentered solution implementation of primary care seemed to reduce deforestation due to less dependency on logging money for basic needs (jones et al, 2020). the science evidence is robust; therefore, this identity should be recognized by patients, healthcare professionals, academics, industry, and policy makers to accelerate investments in primary care in proportion to the emergency of climate change and anthropocene challenges. conclusion this case study offers a blueprint, and a roadmap of how primary care can mitigate climate change (e.g., avoiding health hyper consumerism, overtreatment, healthcare overuse, higher energy hospital centrism, reducing deforestation, ect), advance adaptation (address underuse of healthcare services, higher quality healthcare closer to disaster-vulnerable communities), and build resilience (community comprehensive health services that are effective in responding climate change). this intersects with sdg3, reinforcing that all concerned with the challenges of the anthropocene should strive for high quality primary care based universal health coverage. the identification of primary care providers as champions of ph action may help change the mindset of healthcare stakeholders from patients, doctors, industry, and policy makers to prioritize primary care to advance health equity and protect planetary natural systems. every primary care provider who strives for best practices, avoiding overtreatment, sharing decisionmaking and advocating for stronger primary care principles is increasing health equity and reducing the healthcare eco-footprint two core targets of patientcentered ph care. including omfp in clinical practice would be the “cherry on the cake”. imagine trusted primary care providers in every community around the world (family doctors/general practitioners alone represent over 500,000 clinicians worldwide) encouraging their patients toward ph action. references akobeng, a. k. (2005). principles of evidence-based medicine. archives of disease in childhood, 90(8), 837–840. https://doi.org/10.1136/adc.2005.071761 bansal, a & blashki, g.(2022) “aarti bansal and grant blashki: six steps to both greener and better primary care.” the bmj opinion. london, england: bmj publishing group limited.https://blogs.bmj.com/bmj/2020/1 2/15/aarti-bansal-and-grant-blashki-sixsteps-to-both-greener-and-better-primarycare/. accessed 30 8 2022. berwick d. m. (2017). avoiding overuse-the next quality frontier. lancet (london, england), 390(10090), 102–104. https://doi.org/10.1016/s01406736(16)32570-3 de barros, e. & de camargo, t. (2021) “rapid response: re: a planetary health curriculum for medicine.” london, england: bmj, 2022 bmj publishing group ltd. https://www.bmj.com/content/375/bmj.n 2385/rr-1. accessed 30 8 2022. de barros, e., floss, m., guinto, r., de camargo, t., gonçalves, m.r., abelsohn, a. & stein, a.t. 118 ihtp, 2(3), si: 106-123, 2022 cc by-nc-nd 4.0 issn 2563-9269 (2021). “planetary health care and barbara starfield´s legacy.” blog bmj global health. london, england: bmj publishing group limited. https://blogs.bmj.com/bmjgh/2021/06/10/ planetary-health-care/. accessed 30 08 2022. faerron guzmán c. a. (2022). complexity in global healthbridging theory and practice. annals of global health, 88(1), 49. https://doi.org/10.5334/aogh.3758 greene, j. a., & loscalzo, j. (2017). putting the patient back together social medicine, network medicine, and the limits of reductionism. the new england journal of medicine, 377(25), 2493–2499. https://doi.org/10.1056/nejmms1706744 guinto, r. (2018). alma-ata at 40: time to expand to planetary health care. category: blog. health and human rights journal. https://www.hhrjournal.org/2018/10/alma -ata-at-40-time-to-expand-to-planetaryhealth-care/ accessed nov 15 2022 haines, a., & floss, m. (2021). the inverse care law in the anthropocene epoch. lancet (london, england), 397(10276), 773–774. https://doi.org/10.1016/s01406736(21)00304-4 herrmann, a., lenzer, b., müller, b. s., danquah, i., nadeau, k. c., muche-borowski, c., & traidlhoffmann, c. (2022). integrating planetary health into clinical guidelines to sustainably transform health care. the lancet. planetary health, 6(3), e184–e185. https://doi.org/10.1016/s25425196(22)00041-9 hummers-pradier, e., beyer, m., chevallier, p., eilattsanani, s., lionis, c., peremans, l., petek, d., rurik, i., soler, j. k., stoffers, h. e., topsever, p., ungan, m. & van royen, p. (2009). the research agenda for general practice/family medicine and primary health care in europe. part 1. background and methodology. the european journal of general practice, 15(4), 243–250. https://doi.org/10.3109/138147809034521 84 iacobucci g. (2019). planetary health: wonca urges family doctors to commit to action. bmj (clinical research ed.), 364, l1002. https://doi.org/10.1136/bmj.l1002 jones, i. j., macdonald, a. j., hopkins, s. r., lund, a. j., liu, z. y., fawzi, n. i., purba, m. p., fankhauser, k., chamberlin, a. j., nirmala, m., blundell, a. g., emerson, a., jennings, j., gaffikin, l., barry, m., lopez-carr, d., webb, k., de leo, g. a., & sokolow, s. h. (2020). improving rural health care reduces illegal logging and conserves carbon in a tropical forest. proceedings of the national academy of sciences of the united states of america, 117(45), 28515–28524. https://doi.org/10.1073/pnas.2009240117 latour, bruno. (2007) reassembling the social: an introduction to actor-network-theory. oxford university press: usa. macneill, a. j., mcgain, f., & sherman, j. d. (2021). planetary health care: a framework for sustainable health systems. the lancet. planetary health, 5(2), e66–e68. https://doi.org/10.1016/s25425196(21)00005-x mcwhinney & freeman, t. (2012). manual de medicina de família e comunidade. ian r. porto alegre, brasil: artmed. makary, m. a., & daniel, m. (2016). medical error-the third leading cause of death in the us. bmj (clinical research ed.), 353, i2139. https://doi.org/10.1136/bmj.i2139 morland, p. (2022) “the big idea: why modern medicine can't work without stories.” london, england: the guardian. https://www.theguardian.com/books/2022 /aug/15/the-big-idea-why-modernmedicine-cant-work-without-stories. accessed 30 august 2022. moore a. (2021). a planetary health curriculum for medicine. bmj (clinical research ed.), 375, n2385. https://doi.org/10.1136/bmj.n2385 pencheon, d., & wight, j. (2020). making healthcare and health systems net zero. bmj (clinical research ed.), 368, m970. https://doi.org/10.1136/bmj.m970 redvers n. (2021). patient-planetary health cobenefit prescribing: emerging considerations for health policy and health professional practice. frontiers in public health, 9, 678545. 119 ihtp, 2(3), si: 106-123, 2022 cc by-nc-nd 4.0 issn 2563-9269 https://doi.org/10.3389/fpubh.2021.67854 5 ryan, b. l., brown, j. b., tremblay, p. f., & stewart, m. (2019). measuring patients' perceptions of health care encounters: examining the factor structure of the revised patient perception of patient-centeredness (pppcr) questionnaire. journal of patientcentered research and reviews, 6(3), 192– 202. https://doi.org/10.17294/23300698.1696 starfield b. (2012). primary care: an increasingly important contributor to effectiveness, equity, and efficiency of health services. sespas report 2012. gaceta sanitaria, 26 suppl 1, 20–26. https://doi.org/10.1016/j.gaceta.2011.10.0 09 simmenroth, a., carelli, f., vallersnes, o., sammut, m., zarbailov, n., cojić, m., kiknadze, n., rieder, a., madjova, v., harding, a., michels, n. & karppinen, h. (2020). i. brussels, belgium: euract europe, wonca. solomon, c. g., & larocque, r. c. (2019). climate change a health emergency. the new england journal of medicine, 380(3), 209– 211. https://doi.org/10.1056/nejmp1817067 united nations. department of economic and social affairs. (2022) “the 17 goals | sustainable development.” https://sdgs.un.org/goals. accessed 30 august 2022. whitmee, s., haines, a., beyrer, c., boltz, f., capon, a. g., de souza dias, b. f., ezeh, a., frumkin, h., gong, p., head, p., horton, r., mace, g. m., marten, r., myers, s. s., nishtar, s., osofsky, s. a., pattanayak, s. k., pongsiri, m. j., romanelli, c., soucat, a., … yach, d. (2015). safeguarding human health in the anthropocene epoch: report of the rockefeller foundation-lancet commission on planetary health. lancet (london, england), 386(10007), 1973–2028. https://doi.org/10.1016/s01406736(15)60901-1 wonca (world organization of family doctors) europe. (2020) “planetary health & primary care – 67th session of the who regional committee for europe.” brussels, belgium: wonca europe. https://www.woncaeurope.org/kb/planeta ry-health-and-primary-care-%e2%80%9367th-session-of-the-who-regionalcommittee-for-europe. accessed 30 august 2022. wonca (world organization of family doctors). (2019) “the wonca working party on the environment statement to declare climate emergency.” thailand: bangkok: wonca. https://www.globalfamilydoctor.com/new s/workingpartyontheenvironmentrecognis eclimateemergency.aspx. accessed 25 8 2022. xie, e., de barros, e. f., abelsohn, a., stein, a. t., & haines, a. (2018). challenges and opportunities in planetary health for primary care providers. the lancet. planetary health, 2(5), e185–e187. https://doi.org/10.1016/s25425196(18)30055-x 120 ihtp, 2(3), si: 106-123, 2022 cc by-nc-nd 4.0 issn 2563-9269 figure 1. wonca tree of core competencies and characteristics 121 ihtp, 2(3), si: 106-123, 2022 cc by-nc-nd 4.0 issn 2563-9269 figure 2. wonca three dimension curriculum 122 ihtp, 2(3), si: 106-123, 2022 cc by-nc-nd 4.0 issn 2563-9269 figure 3. actor-network theory 123 ihtp, 2(3), si: 106-123, 2022 cc by-nc-nd 4.0 issn 2563-9269 figure 4. patient-centered planetary health care ihtp, 2(3), si: 48-60, 2022 cc by-nc-nd 4.0 issn 2563-9269 48 analyse comparative des initiatives one health en guinée et en république démocratique du congo : un appel à l’opérationnalisation/ comparative analysis of one health initiatives in guinea and the democratic republic of congo: a call for operationalization special issue: planetary health stéphanie maltais1, salifou talassone bangoura2, rolly nzau paku3-4, marlène metena mambote4, castro hounmenou2-5, simon rüegg6, justin masumu4, rodrigue deuboué tchialeu1, sheila makiala7, abdoulaye touré2, alioune camara2, alpha kabinet keita2, sanni yaya1 1école de développement international et mondialisation, université d’ottawa, canada; 2centre de recherche et de formation en infectiologie de guinée, guinée; 3institut national de recherche biomédicale, république démocratique du congo; 4université pédagogique nationale, république démocratique du congo; 5laboratoire de biomathématiques et d’estimations forestières, université d’abomey calavi, bénin; 6université de zurich, suisse; 7université de kinshasa, république démocratique du congo corresponding author: s. maltais (smalt006@uottawa.ca) resume la guinée et la république démocratique du congo (rdc) sont deux pays confrontés à des maladies zoonotiques (ré)émergentes, lesquelles représentent de graves menaces pour la santé publique et pour l’économie. cela renforce l’importance de mettre l'accent sur les approches interdisciplinaires pour la prévention, la détection et l’atténuation des maladies infectieuses afin de mettre en place des systèmes de réponses adéquats. dans les dernières années, des efforts ont été fournis dans les deux pays pour la conception, la mise en œuvre et la promotion de l’approche “une seule santé” (one health) qui offre des solutions à l’interface homme-animal-plante-écosystèmes. cependant, dans ces pays, il n’existe pas une approche systémique “une seule santé” qui soit réellement opérationnelle. ainsi, cet article vise à faire une analyse comparative des initiatives « one health » (oh) en guinée et en rdc. les résultats suggèrent qu'il existe un engagement fort de la part du gouvernement guinéen à signer un ordre conjoint de collaboration entre les trois départements clés, mais la coopération et la collaboration entre les différents secteurs et disciplines font défaut. en rdc, trois plateformes existent, mais leurs actions ne sont pas coordonnées, ce qui démontre les lacunes dans la vision globale que devrait avoir l’approche oh. le défi majeur dans ces deux pays est d'adopter une approche holistique pour dépasser les structures et les paradigmes organisationnels et disciplinaires pour développer une véritable coopération entre tous les secteurs directement ou indirectement touchés par les maladies à potentiel épidémique. ihtp, 2(3), si: 48-60, 2022 cc by-nc-nd 4.0 issn 2563-9269 49 abstract guinea and the democratic republic of congo (drc) are two countries facing (re)emerging zoonotic diseases, which pose serious threats to public health and the economy. this reinforces the importance of emphasizing interdisciplinary approaches for the prevention, detection, and mitigation of infectious diseases to put in place adequate response systems. in recent years, efforts have been made in both countries for the design, implementation, and promotion of the “one health” (oh) approach which offers solutions at the human-animalanimal-plant-ecosystems interface. however, in these countries, there is no operational oh systemic approach. thus, this article aims to make a comparative analysis of the oh initiatives in guinea and the drc. findings suggest there is a strong commitment on the part of the government of guinea to sign a joint order of collaboration between the three key departments, but cooperation and collaboration between different sectors and disciplines is lacking. in the drc, three platforms exist but are not coordinated, which shows gaps in the overall vision that oh should be in the country. the major challenge in these two countries is to adopt a holistic approach to go beyond organizational and disciplinary structures and paradigms to develop real coordination and cooperation between all the sectors directly or indirectly affected by diseases with epidemic potential. keywords guinée; one health; une seule santé; république démocratique du congo; zoonoses introduction l'émergence et la réémergence des maladies zoonotiques provoquant des épidémies récurrentes ont augmenté ces deux dernières décennies en raison de facteurs anthropiques, tels que le commerce international, les mouvements de populations humaines et animales et la perturbation des écosystèmes par les activités humaines ; qui ne sont ni plus ni moins que les conséquences de la croissance démographique mondiale et de la mondialisation (debnath et al., 2021 ; jones et al., 2013). environ deux-tiers des maladies émergentes affectant l'homme sont d'origine animale et la plupart d'entre elles proviennent de la faune (ihekweazu et al., 2021). la fièvre hémorragique ebola est un exemple de maladie d'origine zoonotique, reconnue dans le monde entier comme une épidémie récurrente, à grande échelle, grave et mortelle (mayhew et al., 2021 ; baize et al., 2014 ; bausch & schwarz, 2014). plus récemment, la pandémie de covid-19 est venue s’ajouter à cette liste (lam et al., 2020). toutes ces maladies ont causé une mortalité et une morbidité importantes, et ont laissé un impact énorme sur les systèmes de santé, la société et l'économie non seulement des pays touchés, mais aussi sur l'économie mondiale (debnath et al., 2021 ; smith et al., 2019). devant ce fait, une approche collaborative et multidisciplinaire, dépassant les frontières de la santé animale, humaine et environnementale, est nécessaire pour comprendre l'écologie de chaque maladie zoonotique émergente, afin d'entreprendre une évaluation des risques et d'élaborer des plans de réponse et de contrôle (mackenzie & jeggo, 2019 ; standley et al., 2019 ; smith et al., 2014). différents auteurs ont discuté de l'importance de l’approche « une seule santé » ou one health (oh) dans les pays africains. par exemple, greter et al. (2014) ont indiqué l’importance du plaidoyer pour le travail et la recherche parmi les communautés pastorales d'afrique subsaharienne, tandis que travis et al. (2014) ont discuté de la lutte contre les maladies zoonotiques telles qu'ebola et de la nécessité de renforcer les capacités des professionnels de la santé. un autre exemple est l’importance de l'examen de politique de santé, en particulier, pour le contrôle des maladies endémiques et zoonotiques négligées (oms, 2017), mais aussi les maladies chroniques (rabinowitz et al., 2013). ces études en viennent à un constat commun, soit la nécessité d’unir les instances nationales et internationales responsables de la santé publique, de la santé animale et de la sauvegarde de l’environnement, en vue de favoriser la prévention et la correction éventuelle d'événements préjudiciables ihtp, 2(3), si: 48-60, 2022 cc by-nc-nd 4.0 issn 2563-9269 50 à la santé globale. l'approche oh a souvent été invoquée sans pour autant déboucher sur une opérationnalisation réelle et une implication effective des parties prenantes à l’interface homme animale environnement (parodi, 2021). en guinée, comme en république démocratique du congo (rdc), des efforts ont été déployés pour la mise en œuvre de l’approche oh. en guinée, dans la période post-ebola en 2017, une plateforme nationale oh a été mise en place par un arrêté conjoint signé par les ministères de la santé, de l’élevage et des productions animales, de l’environnement et des eaux et forêts (ministère de la santé et al., 2017), et a été déconcentrée jusqu'au niveau communautaire par la suite. en plus, d’autres initiatives oh comme le resoh-labo, ebosursy et des travaux de recherche intégrant les initiatives oh ont également vu le jour depuis dans les deux pays. en dépit de ces initiatives, des questions importantes subsistent sur la décentralisation et l'opérationnalisation concrètes des plateformes oh par défaut de maintien des collaborations intersectorielles aux fins de la prévention et du contrôle des maladies zoonotiques (asaaga et al., 2021 ; killewo et al., 2017). cela pourrait être dû à des facteurs qui agissent soit pour limiter, soit pour faciliter le succès de la convergence intersectorielle à différentes étapes de la collaboration à savoir : le partage d'informations, la réalisation d'activités communes et la fusion des ressources et des infrastructures (asaaga et al., 2021). par conséquent, cet article vise à faire une analyse comparative des initiatives oh en guinée et en rdc en mettant l’accent sur la nécessité de rendre opérationnelles les plateformes oh au niveau de la base communautaire afin d’atténuer l’émergence, la transmission des maladies et les risques connexes pour l’économie, la sécurité alimentaire et les inégalités sociales et d’activer les dispositifs de détection, d’alerte, de réaction précoces et le développement des capacités de diagnostic. l’article est divisé en différentes sections portant respectivement sur le cadre théorique, la méthodologie, les résultats, la discussion et se termine par une conclusion qui présente quelques recommandations. cadre théorique le concept oh trouve ses origines en 1855 quand rudolf virchow a trouvé des pathologies transmissibles entre espèces, ce qu’on appelle aujourd’hui les zoonoses (brown et al., 2020). le concept a évolué à travers le temps, mais a réellement été popularisé en 2004 lors de la conférence de la wildlife conservation society où l’on a affirmé les liens étroits entre la conservation de l’environnement, la santé humaine, la santé animale et la sécurité (brown et al., 2020 ; cook et al., 2009). depuis lors, l’approche oh est de plus en plus populaire pour gérer les problèmes de santé complexes qui requièrent une collaboration multisectorielle et interdisciplinaire (brown et al., 2020). selon les principes de manhattan (cook et al, 2009), l’approche oh fait du plaidoyer pour reconnaître certains principes présentés dans le tableau 1. ces principes nous serviront pour faire un état des lieux des initiatives oh dans les deux pays de notre étude de cas. dans les résultats, nous présenterons les initiatives oh dans les deux pays et la discussion nous permettra de montrer les acquis pour chacun des principes de manhattan. bref historique de l’approche oh en guinee et en rdc la guinée et la république démocratique du congo (rdc) sont deux pays d'afrique fortement affectés par des maladies zoonotiques à potentiel épidémique (vieira et al., 2017). la guinée est le foyer écologique pour les maladies à potentiel épidémique telles que la méningite, la fièvre jaune et les fièvres hémorragiques de lassa et d'ebola (kolie et al., 2021). le pays a connu entre 2014 et 2016 la plus grande épidémie de la maladie à virus ebola (mve) de l’afrique de l’ouest et la plus virulente depuis son apparition en 1976 (mbaye et al., 2017). à la suite, plusieurs flambées de fièvres hémorragiques virales se sont succédé. des cas aigus de la fièvre hémorragique lassa ont été déclarés dans les préfectures de macenta en 2018 et de kissidougou en 2019 (magassouba et al., 2020). à cela s’ajoute la résurgence de l’épidémie de la mve en février 2021 (keita et al., 2021) et un cas de maladie à virus ihtp, 2(3), si: 48-60, 2022 cc by-nc-nd 4.0 issn 2563-9269 51 marburg qui a été déclaré en août 2021 (paweska & groome, 2021). la rdc, pour sa part, est le pays africain qui a signalé le plus d'épidémies. dès les années 1970, le pays a enregistré les premiers cas de monkeypox (vandenbergen et al., 2022) et de la mve auxquels vont succéder plusieurs autres flambés épidémiques (shears & garavan, 2020). la plus conséquente des épidémies de la mve était celle de 2018-2019 qui a été déclarée dans la province du nord-kivu et qui s’est propagée en ituri. elle a touché des provinces déjà fortement impactées depuis plus de 20 ans par l’insécurité générée par les affrontements entre différents groupes armés (shears & garavan, 2020). la fièvre jaune, le chikungunya, le choléra, la rage sont des maladies sous surveillance constamment rapportées en plus de la covid-19. à titre d’exemple, plus de 3.236 décès sont causés par le choléra dans le pays entre 2017 et 2022 (global task force, 2022); une stratégie nationale appelée « approche communautaire de lutte contre le choléra par la technique de quadrillage (actq) » a été développée et a répondu en baissant significativement l’incidence de la maladie en 2021 et 2022. la résurgence de la maladie a été signalée à partir de la semaine 35 de l’année 2022 dans plusieurs zones de santé dans les provinces de l’est du pays et une campagne de vaccination ciblée des enfants âgés d’au moins une année a permis de vacciner 1.909.081 enfants sur une cible de 2.016.512 dans les provinces de haut lomami, du sud-kivu et du tanganyika (global task force, 2022). le monkeypox sévit principalement dans le centre du pays, notamment dans les provinces du sankuru, de la tshopo, du maniema, de la tshuapa et de l’equateur (osadebe et al., 2017) avec plus de 1.284 cas signalés en 2022 avec une tendance d’endémicité avérée depuis plusieurs années alors que des cas de la fièvre jaune sont constamment signalés dans les provinces du kongo-central et le kwango, dans les frontières avec l’angola (franke, 2017). à la lumière de ces deux contextes où des maladies à potentiel épidémiques surviennent constamment, nous souhaitons établir un état des lieux des initiatives oh dans les deux pays. actuellement, aucune étude ne répertorie ces initiatives de façon exhaustive. méthodes cet article présente une perspective comparative de deux études de cas (guinée et république démocratique du congo). l’étude a consisté en une revue systématique de la littérature publiée entre 2008 et 2022 sous forme d’articles scientifiques et de rapports techniques. les ressources électroniques ont été identifiées à partir de sources variées. il s’agit de bases de données à savoir pubmed/medline, science direct et google scholar. les publications sur la période 2008-2022 en langue anglaise et en langue française ont été sélectionnées. les principaux termes utilisés comme stratégie de recherche étaient : one health + guinea ; one health + democratic republic of congo ; une santé + guinée ; une seule santé + guinée ; une santé + république démocratique du congo ; une seule santé + république démocratique du congo. comme il y avait très peu d'articles scientifiques sur le sujet, nous avons consulté la littérature grise. les documents les plus pertinents proviennent des sources ministérielles des deux pays étudiés. l'analyse des documents a été faite qualitativement. il est à noter que cette analyse comparative comporte certaines limites liées à la quantité, la qualité et la disponibilité des documents sur le sujet. cela dit, nous pensons que les documents consultés ont fourni suffisamment d'informations pour brosser un tableau de la situation. initiatives en lien avec l’approche oh en guinée et en rdc dans cette sous-section sur les résultats, nous exposerons les initiatives oh dans les deux pays à l’étude. initiatives “une seule santé” en guinée en date du 31 juillet 2017, à la suite de la première épidémie de mve, les ministères de la santé, de l’élevage et des productions animales, de l’environnement et des eaux et forêts ont signé un arrêté conjoint n°a/2017/3337/ms/mepa/meef/sgg portant sur la création, les attributions, l’organisation et le fonctionnement de la plateforme nationale « une seule santé ». celle-ci a pour mission de coordonner, ihtp, 2(3), si: 48-60, 2022 cc by-nc-nd 4.0 issn 2563-9269 52 dans une approche multisectorielle et multidisciplinaire, toutes les interventions sanitaires en vue de prévenir, détecter et riposter contre les maladies (ré)émergentes à potentiel épidémique (ministère de la santé et al., 2017a). cette initiative avait au départ pour mission de suivre et veiller à l’exécution des projets suivants : le projet d’appui au secteur de la santé post-ebola (passp), le projet de renforcement des laboratoires (labogui) via la fondation mérilleux, et le projet de renforcement des systèmes de surveillance des maladies (redisse), financé par la banque mondiale. normalement, selon le chapitre 2 de l’arrêté, le comité de pilotage ne devait se rencontrer que deux fois par année ce qui est bien peu pour réellement opérationnaliser une collaboration multisectorielle. cet arrêté prévoyait aussi la création de la plateforme oh au niveau de la base pour discuter, analyser, formuler des recommandations et déterminer comment travailler ensemble pour traiter des questions de santé humaine, animale et environnementale spécifiques à chaque localité (ministère de la santé et al., 2017a). en application de cet arrêté, la plateforme oh a été mise en place au niveau central et a été déconcentrée jusqu'au niveau communautaire dans les dernières années. en sus de cet arrêté, d’autres initiatives oh ont vu le jour depuis 2017 comme un projet initié par usaid pour développer une plateforme nationale, et quelques initiatives dans le cadre du projet redisse (ministère de la santé et al., 2017b). ce dernier comprenait différentes composantes dont la surveillance et la notification, le renforcement des capacités des laboratoires, la formation de la main d'œuvre, la préparation et la riposte rapide, la surveillance et le rapportage des informations (ministère de la santé et al., 2017b). à côté de ces initiatives, des acteurs de la recherche, dont ceux du centre de recherche et de formation de guinée (cerfig), l’institut national de santé publique de guinée (insp) et même l’institut pasteur de guinée travaillent sur des projets qui sont à l’interface homme-faune-sauvage intégrant le caractère « une seule santé ». il s’agit entre autres du projet ebohealth, ebosursy et la surveillance des virus respiratoires, y compris les anciens coronavirus. récemment, le centre de recherches pour le développement international du canada, a financé le projet doperaus pour trois ans afin d’opérationnaliser l’approche oh en guinée et en rdc. enfin, les institutions universitaires et d’autres organisations s’impliquent dans le renforcement des compétences locales. par exemple, l’institut pasteur a offert une formation oh en 2017 dans le cadre du projet labo-net coordonné par expertise france et l’université gamal abdel nasser, à travers le cerfig, en collaboration avec l’université de montpellier, offrent désormais un programme de maîtrise en santé globale en intégrant les perspectives oh. en résumé, il existe une pléthore d’initiatives qui regroupent des acteurs communs, mais qui n’interagissent pas nécessairement les unes avec les autres. il existe également un point focal oh au bureau pays de l’organisation mondiale de la santé (oms). initiatives “une seule santé” en rdc en rdc, il existe trois plateformes qui fonctionnent selon l’approche oh. il s’agit de la commission de coordination oh (ccus) créée par le ministère de l’enseignement supérieur, la fédération « une santé » (fus) mise en place par les fédérations de santé, et le comité oh en santé animale (cussa) créé par le ministère de pêche et élevage. depuis récemment, le pays bénéficie d’un renforcement de l’approche oh à travers le projet redisse de la banque mondiale. d’autres initiatives pour de l’approche oh sont opérationnelles comme le africa one health university network (afrohun) qui opère au sein de l’école de santé publique de l’université de kinshasa et qui développe plusieurs actions qui soutiennent l’approche "une seule santé". de même, le projet resoh-labo, lancé récemment par l’agence française de développement (afd) et expertise france, qui s’inscrit dans l’initiative « santé commune », vise à renforcer les capacités des laboratoires provinciaux, en améliorant l’organisation du réseau de laboratoires à l’échelle provinciale et nationale, ainsi que les capacités de surveillance épidémiologique en mettant l’accent sur les questions du genre en vue de réduire durablement les inégalités (lancement du projet resoh-labo, 2022). aux échelles institutionnelle ou interinstitutionnelle, certaines initiatives oh ont aussi vu le jour. à l'institut national de recherche biomédicale (inrb), par ihtp, 2(3), si: 48-60, 2022 cc by-nc-nd 4.0 issn 2563-9269 53 exemple, le programme fa 5 qui regroupe des experts de l’inrb, du laboratoire vétérinaire central de kinshasa (lcvk) ainsi que ceux de l’institut de médecine tropicale (imt) du royaume de la belgique dispose en son sein, dans le cadre d’une coopération interinstitutionnelle, d’une plateforme oh qui réalise des activités de surveillance, de recherche et de formation continue à l’interface « homme animal ». de même, plusieurs projets de recherche logés à l’inrb et au lcvk comme le projet satreps, andemia, creid-eca adoptent aussi l’approche oh dans leur fonctionnement. il en est de même de l’ecole de santé publique, l’université de kinshasa (unikin) et l’université pédagogique nationale (upn) qui disposent aussi de projets oh. des formations postuniversitaires adoptant l’approche oh ont aussi été lancées dans plusieurs institutions du pays. c’est le cas du programme feltp (field epidemiology and laboratory training program) organisé au sein de l’ecole de santé publique, du programme de master ecom-alger (écologie des maladies infectieuses, aléas naturels et gestion des risques) de la faculté de médecine de l’université de kinshasa ou du programme de renforcement des compétences en diagnostic, épidémiologie et économie de la santé animale (recodessa) qui est organisé au sein de la faculté de médecine vétérinaire de l’université pédagogique nationale (oms, 2018). discussion des lacunes dans la mise en œuvre de l’approche et un manque de vision holistique en guinée, l’engagement politique des ministères responsables de la santé humaine, animale et environnementale dans le cadre de la promotion de l'approche « une seule santé » est clairement défini comme dénote la signature de l’arrêté conjoint de collaboration entre les trois secteurs et l’élaboration d’un plan stratégique national oh qui a été soutenu par un manuel de gouvernance de la plateforme oh (république de guinée, 2018a, 2018b). toutefois, malgré cet engagement ponctuel qui se résume en quelques rencontres annuelles, il existe un manque de transparence quant aux résultats de ces rencontres et de toutes les initiatives suivies par le comité. la plateforme nationale oh travaille encore sur l’élaboration de divers guides techniques comme un guide de messages harmonisés sur les zoonoses prioritaires ou encore le guide de procédures opérationnelles standard de la communication de risque (hann et al., 2020). il y a donc encore des lacunes à l’égard de la mise en pratique des principes oh en guinée. depuis la première épidémie d’ebola en guinée, il y a eu une réelle prise de conscience de l’importance du décloisonnement du secteur de la santé et d’une réponse multisectorielle lors des épidémies en guinée et que celle-ci devait être renforcée à travers l’opérationnalisation de l’approche « une seule santé » (maltais et al, 2022). cependant, force est de constater que malgré le grand nombre d’initiatives oh dans le pays, il demeure un engagement inégal entre la santé animale, humaine et environnementale. de plus, la coordination entre les trois secteurs reste un défi important pour diverses raisons qui recoupent ce qui se trouve dans la littérature comme les barrières interdisciplinaires, les bénéfices présumés, la prise de décision ou encore la gouvernance qui diffèrent d’un domaine à l’autre (antoine-moussiaux et al., 2019). notons qu’au-delà de l’engagement de ces trois secteurs, vu la multi dimensionnalité des crises sanitaires, d’autres disciplines ou secteurs devraient également s’impliquer dans la lutte contre les maladies à potentiel épidémique. par exemple, ce n’est que pendant la période post-ebola qu’on a tenté de formaliser l’implication des services de sécurité lors des épidémies en guinée (maltais, 2019). à ce sujet, des écrits sur l’approche « une seule santé » mentionnent qu’on devrait adopter une approche holistique, voire pangouvernementale, dans la gestion des crises sanitaires puisque la santé est un produit de l’environnement socioécologique (queenan et al., 2017). les crises sanitaires sont influencées par des déterminants socio-économiques, politiques, environnementaux, culturels, etc. d’ailleurs, queenan et al. (2017) montrent bien les liens entre les objectifs de développement durable des nations unies et l’approche oh. des partenariats solides (odd 13) en faveur de l’approche oh permettent de vivre dans un meilleur environnement naturel (odd13, 14, 15), d’avoir des institutions et infrastructures de qualité (odd 2, 6, 7, 8, 9, 11, 12) et assurent le bienêtre (odd 1, 3, 4, 5, 10, 16) (queenan et al., 2017 :5). ihtp, 2(3), si: 48-60, 2022 cc by-nc-nd 4.0 issn 2563-9269 54 ces liens avec les odd mettent en évidence l'aspect multidimensionnel des crises sanitaire et l'importance d'adopter une approche multidisciplinaire pour y répondre. des défis de coordination en rdc, la plateforme nationale a été créée par le ministère de l’enseignement supérieur et université par l’arrêté ministériel n° 405/minesu/cabmin/mml/cb/jn/2011 du 09 novembre 2011 sous la dénomination du comité de coordination une santé ‘ccus). en 2022, elle est devenue commission de coordination une santé (ccus) par l'arrêté ministériel n° 188/minesu/cabmin/mnb/rmm/2022 du 29 avril 2022. depuis, la ccus élaboré un plan d’action stratégique une santé 2021-2026 grâce à l’appui l’oms, l’usaid et le global health security agenda (ghsa), la fao à travers son centre d’urgence pour la lutte contre les maladies animales transfrontalières (ectad), le « breakthrough action for social and behavior change », l’afrohun, l’african field epidemiology network (afnet). elle a aussi, grâce aux mêmes partenaires, pu développer un guide de mise en place des plateformes « une seule santé » dans les provinces. la ccus a largement contribué à l’élaboration de plusieurs plans de lutte comme celui de la rage ou la grippe aviaire. contrairement à la guinée où la plateforme nationale a bénéficié de la signature des ministères impliqués dans la gestion de la santé, la plateforme nationale de la rdc (ccus) est directement placée sous la tutelle du ministère de l’enseignement supérieur et universitaire. en plus, elle ne dispose pas d’une plateforme sectorielle en santé animale ni d’une qui regroupe les corporations de la santé. bien qu’en guinée des efforts importants aient été fournis, le défi majeur est la coordination au sein des ministères concernés lors de l’émergence de risques de santé publique de portée nationale ou internationale comme ce fût mentionné lors de l’évaluation du rsi (oms, 2017). à cela s’ajoute d’autres défis, à savoir : la pérennité de l’engagement politique à travers entre autres, la tenue des réunions du comité de pilotage de la plateforme et la mise en œuvre des recommandations ; l’élargissement de la plateforme à d’autres ministères et entités traditionnelles qui peuvent jouer un rôle clé dans la promotion des initiatives oh ; la mobilisation des ressources financières pour la mise en œuvre des différents plans stratégiques élaborés et du plan intégré de communication ; le renforcement de la collaboration multisectorielle par le soutien et l’amélioration les efforts de collaboration déjà en cours ; l’alignement des partenaires techniques et financiers (ptfs) sur la mise en œuvre de la stratégie nationale oh ; le renforcement de la collaboration entre et avec les ptfs (hann et al., 2020). en rdc, la plateforme nationale ccus a bénéficié de l’appui de divers ptfs pour mettre en place des comités provinciaux dans certaines provinces du pays. cette décentralisation est en cours et doit continuer jusqu’à couvrir les 26 provinces du pays, car actuellement moins de la moitié des provinces dispose de tels comités. de même, d’autres comités doivent être installés au niveau des territoires ainsi que dans les secteurs de la périphérie. l’implication politique du ministère de l’enseignement supérieur et universitaire en collaboration étroite avec le ministère de l’intérieur ayant dans ses attributions la gestion des gouverneurs des provinces en rdc est un atout majeur pour le ccus dans l’accompagnement de l’implémentation de la plateforme au niveau intermédiaire (province) et périphérique (territoire et secteur). en leur qualité de chefs de gouvernements provinciaux, les gouverneurs des provinces engagent directement les ministres qui ont en charge la santé humaine, animale, végétale et environnementale dans les provinces. outre tous ces ministères cités, plusieurs autres institutions sont impliquées dans les comités provinciaux une santé (cpus). il s’agit notamment de l’enseignement primaire secondaire et technique (epst), la formation professionnelle, la communication et médias, les actions humanitaires, la recherche scientifique, l’ordre des médecins, l’ordre des médecins vétérinaires, l’ordre des pharmaciens, l’ordre des infirmiers, l’association des techniciens vétérinaires, le point focal de l’afrohun, le laboratoire médical, le laboratoire vétérinaire, etc. l’ensemble de ces parties prenantes impliquées démontre la volonté d’engagement de divers secteurs dans l’approche oh, mais il n’existe actuellement pas ihtp, 2(3), si: 48-60, 2022 cc by-nc-nd 4.0 issn 2563-9269 55 une vision systématique qui permette une coordination efficiente et une structuration pangouvernementale ou pan sociétale de l’approche. l’ouvrage de rüegg et al (2020 :76) montre l’importance de la coordination et de la coopération entre les secteurs dans une perspective complémentaire et d’intégration pour non seulement partager les coûts financiers, mais également adopter une pensée holistique, planifier au-delà de la hiérarchie et des paradigmes organisationnels et à travers un travail consensuel et transdisciplinaire. on encourage donc une coordination flexible entre les professionnels des différentes disciplines (médecine clinique, laboratoires, santé publique, épidémiologie, etc.) et parties prenantes (académiques, non académiques, gouvernementales, nongouvernementales, secteur animal, secteur humain, etc.) (ruëgg et al, 2020:131). actuellement, cette structuration n’existe pas en rdc, mais certains projets en cours tentent de formaliser les collaborations entre les différentes initiatives. l’engagement direct du ministère de l’esu permet par ailleurs d’assurer la formation des acteurs engagés dans les initiatives oh, l’expertise du ministère dans la conception des politiques des initiatives oh et la recherche. toutefois, la mise sous tutelle du ministère de l’esu de la plateforme oh risque de présenter un problème sérieux de leadership eu égard à l’engagement des ministères responsables de la gestion de la santé à l'échelle nationale. actuellement, une initiative est en cours pour la mise en place d’un cadre de concertation oh qui sera mis sous la tutelle du premier ministre et qui va regrouper les différents ministères responsables de la santé (humaine, animale, végétale et environnementale) ainsi que tant d’autres ministères et institutions qui œuvrent directement ou indirectement dans ce secteur. l’approche oh s'appuie sur des actions transdisciplinaires de recherche et de surveillance sur les émergences des maladies, de leur prévention et leur gestion en passant par l’anticipation, et la détection précoce aux niveaux national, régional, et international (contribution du conseil scientifique covid-19, france, 2022) et la mise en place des conventions pour une gestion communautaire comme la réglementation de la chasse et du commerce national et transfrontalier des espèces sauvages (ringuet et al., 2011 ; kaswera et al., 2017). quelques avancées quant aux principes de manhattan au regard des initiatives présentées dans les résultats, nous pouvons affirmer que des acquis ont été faits en guinée et en rdc par rapport aux principes de manhattan (cook et al, 2009). en ce qui a trait au plaidoyer pour favoriser les liens entre la santé animale, environnementale et humaine, nous pouvons affirmer qu’il a été réalisé et a mené à des initiatives concrètes à travers divers projets et des engagements concrets des autorités politiques. par rapport à la nécessité d’avoir une approche flexible et globale dans la prévention, la surveillance et la riposte face aux maladies (ré)émergentes, dans les deux pays, des efforts sont mis en œuvre. par exemple, les résultats montrent que la résolution de comifac sur le plan de convergence et de la conservation. il y a toutefois encore des efforts à mettre en œuvre pour réellement impliquer la gestion de la biodiversité dans le programme de santé comme mentionné dans les principes de manhattan. au sujet du principe de renforcement des capacités de toutes les parties prenantes impliquées dans la réponse aux maladies, nos résultats démontrent clairement une volonté de former et de renforcer les capacités à travers diverses initiatives (formations oh, programmes de cycles supérieurs dans les universités, etc.). enfin, du point de vue du renforcement de la collaboration entre les acteurs privés, publics et les populations à l’égard de l’approche oh, les deux pays à l’étude démontrent qu’il y a une volonté des différents secteurs d’activités (humain, animal et environnemental) ainsi que de toutes les échelles (internationale, nationale et locale) de travailler en collaboration. les projets redisse et doperaus en sont des exemples. certes, des efforts ont été fournis dans les deux pays dans l'intérêt de l’approche oh dans de nombreuses dimensions, mais en pratique, il existe de réels défis pour institutionnaliser et rendre opérationnelle l’approche oh et réellement faire collaborer les trois secteurs d’activités que sont la santé animale, environnementale et humaine (kingsley & taylor, 2017 ; maltais, 2019). ihtp, 2(3), si: 48-60, 2022 cc by-nc-nd 4.0 issn 2563-9269 56 effectivement, l’expérience acquise dans la gestion des épidémies en guinée et en rdc confirme que la gestion des risques sanitaires mondiaux, qu’il s’agisse du contrôle des maladies ou autres événements ayant un impact direct sur la santé, ne peut revenir à un seul secteur et nécessite une coopération des secteurs de la santé dans sa globalité, d’autres secteurs en dehors des secteurs de la santé à impliquer en amont ou en avant des initiatives oh et des décideurs à tous les niveaux de la vie nationale (vsf international, 2020). dans le passé, le fait de mettre en œuvre des politiques isolées a souvent contribué à des réponses inefficaces face aux maladies infectieuses (rüegg et al., 2017). d’où la nécessité de prendre en compte l’approche oh dans une perspective systémique qui permet d’obtenir des résultats probants en termes de durabilité, d’efficience, d’efficacité, mais aussi du point de vue de l’équité entre les espèces (rüegg et al., 2017). au regard des réalités dans les deux pays de notre étude, une coopération sud-sud pourrait certainement contribuer à ce changement de paradigme en faveur d’une approche systémique et intégrée de la santé et favoriser le partage d’expertise et d’expérience. cela peut passer par la co-écriture de projets de recherche-action qui peuvent faire collaborer directement les plateformes oh des deux pays, soutenir les efforts déjà en cours en matière de l'approche oh et d’allier la recherche formative à la recherche interventionnelle en faisant travailler ensemble des personnes des milieux de la recherche, de la pratique et de la politique. en faisant participer les personnalités politiques, cela permettra une meilleure compréhension de oh et permettra de s’attaquer aux principales barrières politiques et culturelles qui limitent la mise en œuvre effective de l’approche oh dans les deux pays. conclusion des initiatives oh ont été développées en guinée et en rdc, deux pays affectés par la prolifération et l’apparition de maladies (ré)émergentes dues aux impacts des changements climatiques, à la pression humaine, aux productions industrielles, les pollutions, la chasse et bien d’autres causes connues ou non. en dépit de la complexité des problèmes sanitaires actuels, les plateformes oh, en les opérationnalisant au niveau de la base communautaire tout en impliquant les secteurs clés de la santé et d’autres secteurs de la vie sociétale, apportent des solutions consensuelles, concrètes et durables. il appert qu’il existe quelques initiatives prometteuses en termes de oh dans les deux pays, mais qu’il n’existe actuellement pas d’approche systématique et formalisée qui permette une réelle collaboration interdisciplinaire qui dépasse les secteurs de la santé animale, environnementale et humaine. malgré l’engagement de certains décideurs politiques, l’opérationnalisation de l’approche oh ne peut se concrétiser par des initiatives ponctuelles comme des projets sans avoir vision holistique, voire pan sociétale de l’approche. il est donc nécessaire de renforcer la fonctionnalité des plateformes pour une meilleure collaboration multisectorielle, transdisciplinaire et multidsciplinaire afin de faire face aux problèmes complexes liés à la santé globale (rüegg et al, 2018) et aux maladies zoonotiques et adapter les solutions. pour ce faire, nous recommandons de renforcer l’implication des différents ministères pour pérenniser les engagements et de partager les pratiques entre les pays qui vivent des défis similaires. références antoine-moussiaux, n., janssens de bisthoven, l., leyens, s., assmuth, t., keune, h., jakob, z., hugé, j., & vanhove, m. p. m. (2019). the good, the bad and the ugly : framing debates on nature in a one health community. sustainability science, 14(6), 1729‑1738. https://doi.org/10.1007/s11625-019-00674z asaaga, f. a., young, j. c., oommen, m. a., chandarana, r., august, j., joshi, j., chanda, m. m., vanak, a. t., srinivas, p. n., hoti, s. l., seshadri, t., & purse, b. v. (2021). operationalising the “one health” approach in india : facilitators of and barriers to effective cross-sector convergence for zoonoses prevention and control. bmc public health, 21, 1517. baize, s., pannetier, d., oestereich, l., rieger, t., koivogui, l., magassouba, n., soropogui, b., sow, m. s., keïta, s., de clerck, h., tiffany, a., dominguez, g., loua, m., traoré, a., kolié, m., malano, e. r., heleze, e., bocquin, a., mély, s., … günther, s. (2014). emergence of https://doi.org/10.1007/s11625-019-00674-z https://doi.org/10.1007/s11625-019-00674-z ihtp, 2(3), si: 48-60, 2022 cc by-nc-nd 4.0 issn 2563-9269 57 zaire ebola virus disease in guinea. the new england journal of medicine, 371(15), 1418‑1425. bausch, d. g., & schwarz, l. (2014). outbreak of ebola virus disease in guinea : where ecology meets economy. plos neglected tropical diseases, 8(7), e3056. brown, h. l., passey, j. l., getino, m., pursley, i., basu, p., horton, d. l., & la ragione, r. m. (2020). the one health european joint programme (ohejp), 2018-2022: an exemplary one health initiative. journal of medical microbiology, 69(8), 1037–1039. https://doi.org/10.1099/jmm.0.001228 cook ra, karesh wb, osofsky sa. the manhattan principles on 'one world, one health'. one world one health. available from: http://www.oneworldonehealth.org/ debnath, f., chakraborty, d., deb, a. k., saha, m. k., & dutta, s. (2021). increased human-animal interface & emerging zoonotic diseases: an enigma requiring multi-sectoral efforts to address. the indian journal of medical research, 153(5‑6), 577‑584. franke, f. (2017). situation internationale, chikungunya dengue zika fièvre jaune. santé publique france, round table report. global task force. (2022). cholera control. workshop report at democratic republic of the congo, 19 pages. greter, h., jean-richard, v., crump, l., béchir, m., alfaroukh, i. o., schelling, e., bonfoh, b., & zinsstag, j. (2014). the benefits of « one health » for pastoralists in africa. the onderstepoort journal of veterinary research, 81(2), e1-3. hann, f., sow, h. f., santé, m., diallo, m. s., elevage, m., hann, a. k., & traoré, j. (2020). bulletin bimestriel d’information de la plateforme one health. echos one health, 5, 24. ihekweazu c, michael ca, nguku pm, waziri ne, habib ag, muturi m, olufemi a, dzikwiemennaa aa, balogun ms, visa ti, dalhat mm, atama nc, umeokonkwo cd, mshelbwala gm, vakuru ct, kabir j, okolocha ec, umoh ju, olugasa b, babalobi o, lombin l, cadmus s; groupe de priorisation des zoonoses du nigéria. priorisation des zoonoses d’importance pour la santé publique au nigéria en utilisant l’approche d’une seule santé. une seule santé. 2021 avr 28;13:100257. doi: 10.1016/j.onehlt.2021.100257. pmid: 34041346; pmcid: pmc8144726. jones, k. e., patel, n. g., levy, m. a., storeygard, a., balk, d., gittleman, j. l., & daszak, p. (2008). global trends in emerging infectious diseases. nature, 451(7181), 990‑993. kaswera, c. k., bashonga, a. b., nebesse, c., rochette, a-j. (2017). rd congo : faune sauvage menacée par le commerce de la viande de brousse. technical report, https://www.reseagate.net/publication/322 641565 keita, a. k., koundouno, f. r., faye, m., düx, a., hinzmann, j., diallo, h., ayouba, a., le marcis, f., soropogui, b., ifono, k., diagne, m. m., sow, m. s., bore, j. a., calvignacspencer, s., vidal, n., camara, j., keita, m. b., renevey, a., diallo, a., … magassouba, n. f. (2021). resurgence of ebola virus in 2021 in guinea suggests a new paradigm for outbreaks. nature, 597(7877), 539‑543. killewo, j., bazeyo, w., & mdegela, r. (2017). one health central and eastern africa : historical and future perspectives. international encyclopedia of public health, 342‑347. kingsley, p., & taylor, e. m. (2017). one health : competing perspectives in an emerging field. parasitology, 144(1), 7‑14. kolie, d., pas, r. v. d., fofana, t. o., delamou, a., put, w. v. d., & damme, w. v. (2021). guinea’s response to syndemic hotspots. bmj global health, 6(10), e006550. lam, t. t.-y., jia, n., zhang, y.-w., shum, m. h.-h., jiang, j.-f., zhu, h.-c., tong, y.-g., shi, y.-x., ni, x.-b., liao, y.-s., li, w.-j., jiang, b.-g., wei, w., yuan, t.-t., zheng, k., cui, x.-m., li, j., pei, g.-q., qiang, x., … cao, w.-c. (2020). identifying sars-cov-2-related coronaviruses in malayan pangolins. nature, 583(7815), 282‑285. lancement du projet resoh-labo (réseau de surveillance epidémiologique one health et laboratoires) en république démocratique du congo. (2022). consulté 27 août 2022, à l’adresse https://www.afd.fr/fr/lancementprojet-resoh-labo-republiquedemocratique-congo https://doi.org/10.1099/jmm.0.001228 http://www.oneworldonehealth.org/ https://www.reseagate.net/publication/322641565 https://www.reseagate.net/publication/322641565 https://www.afd.fr/fr/lancement-projet-resoh-labo-republique-democratique-congo https://www.afd.fr/fr/lancement-projet-resoh-labo-republique-democratique-congo https://www.afd.fr/fr/lancement-projet-resoh-labo-republique-democratique-congo ihtp, 2(3), si: 48-60, 2022 cc by-nc-nd 4.0 issn 2563-9269 58 mackenzie, j. s., & jeggo, m. (2019). the one health approach—why is it so important? tropical medicine and infectious disease, 4(2). https://doi.org/10.3390/tropicalmed40200 88 magassouba, n., koivogui, e., conde, s., kone, m., koropogui, m., soropogui, b., kekoura, i., hinzmann, j., günther, s., keita, s., duraffour, s., & fichet-calvet, e. (2020). a sporadic and lethal lassa fever case in forest guinea, 2019. viruses, 12(10), 1062. https://doi.org/10.3390/v12101062 maltais s (2019). la gestion résiliente des crises sanitaires dans les états fragiles : étude de la crise d’ebola en guinée (thèse de doctorat publiée). université d’ottawa, ontario, canada. http://dx.doi.org/10.20381/ruor24094 maltais, s., brière, s., & yaya, s. (2022). résilience face aux crises sanitaires : un modèle d’analyse pour mieux cerner la complexité de gestion dans les états fragiles. lien social et politiques, 88, 132‑151. https://doi.org/10.7202/1090984ar mbaye, m.e., kone, s., kâ, o., & mboup, s. (2017). évolution de l’implication des communautés dans la riposte à ebola. santé publique, 29(4), 487‑496. https://doi.org/10.3917/spub.174.0487 mayhew, s. h., kyamusugulwa, p. m., kihangi bindu, k., richards, p., kiyungu, c., & balabanova, d. (2021). responding to the 2018-2020 ebola virus outbreak in the democratic republic of the congo : rethinking humanitarian approaches. risk management and healthcare policy, 14, 1731‑1747. ministère de la santé, ministère de l'élevage et des productions, ministère de l'environnement des eaux et forêts. (2017a). arrêté conjoint portant création, attributions, organisation et fonctionnement de la plateforme nationale one health (une seule santé), république de guinée. ministère de la santé, west african health organisation. (2017b). narratif du plan d'action du projet régional de renforcement de la surveillance des maladies en afrique de l'ouest (redisse)-guinée. oms. (2017). evaluation externe conjointe des principales capacités rsi de la république de guinée. genève : organisation mondiale de la santé. licence : cc by-nc-sa 3.0 igo. one health training manual: lecture notes and materials (2018). eds. killewo j, mdegela r, muhimbili university of health and allied sciences, dar es salaam and sokoine university of agriculture, morogoro, tanzania. osadebe, l., hughes, c. m., shongo lushima, r., kabamba, j., nguete, b., malekani, j., pukuta, e., karhemere, s., muyembe tamfum, j.-j., wemakoy okitolonda, e., reynolds, m. g., & mccollum, a. m. (2017). enhancing case definitions for surveillance of human monkeypox in the democratic republic of congo. plos neglected tropical diseases, 11(9), e0005857. parodi, a. l. (2021). le concept « one health », une seule santé : réalité et perspectives. bulletin de l’academie nationale de medecine, 205(7), 659‑661. rabinowitz, p.m., kock, r., kachani, m., kunkel, r., thomas, j., gilbert, j., wallace, r., blackmore, c., wong, d., karesh, w., natterson, b., dugas, r., rubin, c., 2013. toward proof of concept of a one health approach to disease prediction and control. emerg. infect. dis. 19, e130265. https://doi.org/10.3201/eid1912.130265 paweska, j., & groome, m. j. (2021). marburg in guinea : the value of lessons from managing other haemorrhagic outbreaks. the conversation. consulté 22 août 2022, à l’adresse http://theconversation.com/marburg-inguinea-the-value-of-lessons-frommanaging-other-haemorrhagic-outbreaks167392 queenan, k., garnier, j., nielsen, l., buttigieg, s. (alexandra), de meneghi, d., holmberg, m., zinsstag, j., rüegg, s., häsler, b., & kock, r. (2017). roadmap to a one health agenda 2030. cab reviews perspectives in agriculture veterinary science nutrition and natural resources, 12. https://doi.org/10.1079/pavsnnr2017120 14 république de guinée (2018a). plan stratégique « une seule santé » [2019-2023], 59 pages. https://doi.org/10.3390/tropicalmed4020088 https://doi.org/10.3390/tropicalmed4020088 https://doi.org/10.3390/v12101062 http://dx.doi.org/10.20381/ruor-24094 http://dx.doi.org/10.20381/ruor-24094 https://doi.org/10.7202/1090984ar https://doi.org/10.3917/spub.174.0487 https://doi.org/10.3201/eid1912.130265 http://theconversation.com/marburg-in-guinea-the-value-of-lessons-from-managing-other-haemorrhagic-outbreaks-167392 http://theconversation.com/marburg-in-guinea-the-value-of-lessons-from-managing-other-haemorrhagic-outbreaks-167392 http://theconversation.com/marburg-in-guinea-the-value-of-lessons-from-managing-other-haemorrhagic-outbreaks-167392 http://theconversation.com/marburg-in-guinea-the-value-of-lessons-from-managing-other-haemorrhagic-outbreaks-167392 https://doi.org/10.1079/pavsnnr201712014 https://doi.org/10.1079/pavsnnr201712014 ihtp, 2(3), si: 48-60, 2022 cc by-nc-nd 4.0 issn 2563-9269 59 république de guinée (2018b). manuel sur la gouvernance de la plateforme nationale « one health » (une seule santé), 26 pages. ringuet, s., ekhassa, b., van vliet, n., ngandjui, g., mouzong, e. p. (2011). république démocratique du congo : élaboration de la stratégie et du plan national sur la viande de brousse. rapport de l'atelier de kinshasa, 23 au 24 septembre 2009, traffic afrique centrale, yaoundé, cameroun rüegg, s. r., mcmahon, b. j., häsler, b., esposito, r., nielsen, l. r., ifejika speranza, c., ehlinger, t., peyre, m., aragrande, m., zinsstag, j., davies, p., mihalca, a. d., buttigieg, s. c., rushton, j., carmo, l. p., de meneghi, d., canali, m., filippitzi, m. e., goutard, f. l., … lindberg, a. (2017). a blueprint to evaluate one health. frontiers in public health, 5, 20. rüegg sr, nielsen lr, buttigieg sc, santa m, aragrande m, canali m, ehlinger t, chantziaras i, boriani e, radeski m, bruce m, queenen k and hasler b (2018). a systems approach to evaluate one health initiatives, front. vet. sci. 5:23. doi:10.3389/fvets.2018.00023. rüegg, s., buttigieg, s. (alexandra), goutard, f., binot, a., morand, s., thys, s., & keune, h. (2020). integrated approaches to health: concepts and experiences in framing, integration and evaluation of one health and ecohealth, https://doi.org/10.3389/978-2-88963-086-8 shears, p., & garavan, c. (2020). the 2018/19 ebola epidemic the democratic republic of the congo (drc) : epidemiology, outbreak control, and conflict. infection prevention in practice, 2(1), 100038. smith, k. f., goldberg, m., rosenthal, s., carlson, l., chen, j., chen, c., & ramachandran, s. (2014). global rise in human infectious disease outbreaks. journal of the royal society interface, 11(101), 20140950. smith, k. m., machalaba, c. c., seifman, r., feferholtz, y., & karesh, w. b. (2019). infectious disease and economics: the case for considering multi-sectoral impacts. one health (amsterdam, netherlands), 7, 100080. standley, c. j., carlin, e. p., sorrell, e. m., barry, a. m., bile, e., diakite, a. s., keita, m. s., koivogui, l., mane, s., martel, l. d., & katz, r. (2019). assessing health systems in guinea for prevention and control of priority zoonotic diseases: a one health approach. one health, 7, 100093. travis, d. a., chapman, d. w., craft, m. e., deen, j., farnham, m. w., garcia, c., hueston, w. d., kock, r., mahero, m., mugisha, l., nzietchueng, s., b.nutter, f., olson, d., pekol, a., pélican, k. m., robertson, c., & b.rwego, i. (2014). one health: lessons learned from east africa. microbiology spectrum, 2(1), 2.1.14. vandenbergen, l., vandercam, g., hoomaert, e., slujters, a., yombi, j.c. (2022). médecine interne et maladies infectieuses : le monkey poxvirus. cliniques universitaires saint-luc uclouvain, 6 pages. vieira, g., courtois, r., & rusch, e. (2017). approche d’autonomisation d’une communauté africaine dans le diagnostic de soins de santé de deux pays : la guinée conakry et le congo brazzaville. the pan african medical journal, 28, 276. vsf international. (s. d.). mise en œuvre du concept one health dans les pays du sud : une approche globale pour relever les principaux défis des communautés d’éleveurs | vsf international. https://doi.org/10.3389/978-2-88963-086-8 ihtp, 2(3), si: 48-60, 2022 cc by-nc-nd 4.0 issn 2563-9269 60 tableau 1. thématiques à évaluer dans les initiatives oh selon les principes de manhattan reconnaître les liens entre la santé animale, humaine et environnementale reconnaître que les décisions au sujet des terres et de l’eau influent sur la santé inclure les sciences de la faune comme composante intrinsèque de la prévention, de la surveillance, du suivi, du contrôle et de l’atténuation des maladies à l’échelle mondiale reconnaître que les programmes de santé humaine contribuent aux efforts de conservation adopter une approche adaptative, holistique et tournée vers l’avenir de la prévention au contrôle des maladies (ré)émergentes en tenant compte de la complexité des contextes intégrer la conservation de la biodiversité et des besoins humains dans le développement de solution aux menaces sanitaires réduire la demande et mieux réglementer le commerce international d’animaux sauvages vivants et de viande de brousse restreindre l’abattage massif d’espèces sauvages en liberté pour le contrôle des maladies augmenter les investissements dans l’infrastructure mondiale de santé animale et humaine en fonction de la gravité des menaces et accroître la surveillance en améliorant la coordination des réponses des agences gouvernementales et non gouvernementales, des organisations de santé et autres parties prenantes former des relations de collaboration entre les gouvernements, les populations locales et le secteur privé et à but non lucratif pour relever les défis en santé mondiale ihtp, 2(3), 310325, 2022 cc by-nc-nd 4.0 issn 2563-9269 310 examining the mental health impacts of the covid-19 pandemic on international postsecondary students in canada: a cross sectional analysis shirui tan1, fatih sekercioglu2 1school of occupational and public health, toronto metropolitan university, toronto, canada; 2planetary health research lab, school of occupational and public health, toronto metropolitan university, toronto, canada corresponding author: s. tan (shirui.tan@ryerson.ca) abstract globally, the mental health challenges of university and college students are a considerable public health challenge that has been further exacerbated by the covid-19 pandemic. across canada, international postsecondary students have reported experiencing increase financial stress, lack of social support, racist aggression, and travel restrictions. this cross-sectional study aimed to assess the mental health impacts of covid-19 on international postsecondary students in canada. data from 177 international students attending universities and colleges in canada was collected over a 2-month period. results suggest 36.2% of all students reported a high level of perceived stress, with moderate to severe anxiety and depression symptoms reported by 64.4% of the sample. stress (p = 0.015) along with anxiety and depression (p = 0.019) were significantly higher in female study participants. coping strategies related to engaging in activities of daily living were identified. strategies to support international students' mental health and well-being during the pandemic and beyond have been put forward. keywords covid-19; coping; international students; mental health; public health funding source this work was funded by the school of occupational and public health at toronto metropolitan university. introduction the covid-19 pandemic resulted in 579,092,623 confirmed cases and 6,407,556 deaths as of august 5, 2022 (world health organization, 2022). to date, extensive research has shown that covid-19 has unprecedented undesirable mental health effects on the general population worldwide (hwang et al., 2020; salari et al., 2020; sher, 2020; vindegaard & benros, 2020; xiong et al., 2020). the systemic review of xiong et al. (2020) demonstrated that the pandemic has significantly increased the levels of anxiety (6.33% to 50.9%), depression (14.6% to 48.3%), stress (8.1% to 81.9%), psychological distress (34.43% to 38%) and post-traumatic stress disorder (7% to 53.8%) in the general population across several countries. besides, sher (2020) reported that the suicide rate might increase due to the covid-19 pandemic. the mental health challenges of university and college students is a growing public health concern worldwide, which is further accentuated by this global pandemic. university and college students are ihtp, 2(3), 310-325, 2022 cc by-nc-nd 4.0 issn 2563-9269 311 facing unforeseen campus closure or reopening, the alternation of learning mode, financial burden, social isolation, loss of internships, and so forth, and many of them are frustrated with academic disruption or unemployment after graduation (haliwa et al., 2021; lee et al., 2021; li et al., 2020; patsali et al., 2020; wang et al., 2020). as wu et al. (2021) elaborated, the recent prevalence of anxiety and depression among students was higher than normal. in addition, another study among us college students reported that 71% of 195 students indicated the amplification of stress and anxiety due to the pandemic (son et al., 2020). similarly, an increased rate of depressive and anxiety symptoms was observed among college students in china (li et al., 2020), french (essadek & rabeyron, 2020), and greece (patsali et al., 2020). international university students, as a unique subpopulation of students, are more susceptible to mental health challenges amid the pandemic since they are experiencing challenges such as being far away from family, travel restrictions, social exclusion, potential language barriers, cultural shock, and financial stress (e.g., excessive tuition fee) (alam et al., 2021; king et al., 2020; lai et al., 2020). for instance, lai et al. (2020) elucidated that, compared to students who returned to their home countries, “stayers had significantly higher stress from covid19-related challenges such as personal health and lack of social support.” alam et al. (2021) also reported that psychological outcomes and risk factors were more prevalent among international students in china during the pandemic. nevertheless, compared to the studies on university students, there is very little published research on the impacts of covid-19 on international students’ mental health. in canada, even though international students represented 18% of the total enrolments (388,782 students) in universities and colleges in the 2019/2020 academic year (statistics canada, 2021a), their mental health status in the covid-19 pandemic has not been well-documented, as well as the effects of covid-19-related challenges. therefore, we aim to investigate the mental health impacts of covid-19 on international postsecondary students in canada and identify potential covid19-related challenges and coping strategies. our findings will be meaningful for postsecondary institutions, government sectors, and public health professionals. universities and colleges might use our study findings to establish initiatives and resources to support international students coping with the pandemic. methods study design and participants this study was an anonymous cross-sectional online survey that contained 34 close-ended question using google forms. the survey was distributed to students across canada from november 1 to december 31, 2021, and the sample size of 200 participants was anticipated. participants were eligible for the study if they were enrolled as an international student (i.e., holding a study permit) in any postsecondary institution in canada, at least 18 years old, and in fulltime status. participants who were not international postsecondary students in canada, aged under 18 years old, and enrolled with a part-time status were excluded from the study. part-time international students were excluded from the study because, in canada, international students with full-time and part-time status are experiencing different challenges in terms of studying hours, working status, financial stress, and so forth. for instance, full-time students have a heavier course load, are paying higher tuition fees, and can legally work onor off-campus in canada (government of canada, 2019). it is also expected that more international university and college students will choose to be enrolled in the fulltime status since they can work onor off-campus in canada. students must maintain full-time status in canada during each semester of their study to apply for a postsecondary work permit after graduation (government of canada, 2022). participants were selected using the exponential, non-discriminative snowball sampling strategy, where students were encouraged to forward the link to their friends and classmates. recruitment notices and the survey link were posted on various social media platforms, including whatsapp chat groups, international student groups on facebook, wechat groups, instagram, twitter, kijiji, and honeybee. besides, the twitter landing page was designed on wix.com ltd, a web development service. before starting the survey, all participants were required to ihtp, 2(3), 310-325, 2022 cc by-nc-nd 4.0 issn 2563-9269 312 respond to three eligibility questions (i.e., are you an international student currently enrolled in a postsecondary institution in canada? are you a fulltime student? are you at least 18 years old?). in appreciation of participants’ time, they had the option to enter the draw for one of fifteen $20 coffee gift cards after completion. data collection demographic information questionnaire the first nine questions were established to collect the following demographic information of participants: sex, age (18-25 years old, or 25+ years old), geographical regions of origin, ethnicity (african, asian, caribbean, european, oceania, multiethnic, north america, latin, central and south america, or other origins), whether they are currently in canada (yes or no), geographic regions of schools that they are attending in canada (western, central, atlantic or northern), the field of study (medical or healthrelated, or other), level of study (undergraduate or postgraduate) and whether they are in the final year of study (yes, no, or not sure). pandemic-related perceived stress scale the ten-item pandemic-related perceived stress scale (pss-10-c) is the modified version of the famous perceived stress scale. the pss-10-c is a reliable and valid measurement tool (campo-arias et al., 2020). in this study, pss-10-c was utilized to evaluate the level of pandemic-related perceived stress over the past week. example items include “i have felt as if something serious was going to happen unexpectedly with the epidemic.” responses were expressed on the five-point likert scale: “0 = never”, “1 = hardly ever”, “2 = occasionally”, “3 = almost always”, and “4 = always”. items 1, 2, 3, 6, 9, and 10 indicate negative feelings about the pandemic (0 to 4), whereas items 4, 5, 7, and 8 present positive feelings (4 to 0). scores ranged from 0 to 40, with a cutting point of ≥ 25 relating to high perceived stress for covid-19. patient health questionnaire the patient health questionnaire-4 (phq-4) consists of a two-item anxiety subscale and a twoitem depression subscale and is a valid and reliable ultra-brief measure of anxiety and depression symptoms in the population (löwe et al., 2010). respondents were asked to report how often they have been bothered by the feelings related to anxiety and depression in the past two weeks, using the fourpoint likert scale (“0 = not at all”, “1 = several days”, “2 = more than half the days”, and “3 = nearly every day”). the four-item scale includes “feeling nervous, anxious or on edge,” “not being able to stop or control worrying,” “feeling down, depressed, or hopeless,” and “little interest or pleasure in doing things.” the total score ranges from 0 to 12, in which 0-2 indicates no psychological distress, 3-5 indicates mild psychological distress, 6-8 indicates moderate psychological distress, and 9-12 indicates severe psychological distress. on the anxiety and depression subscale (0 to 6), a score of 3 or greater suggests a positive screening need. one general assessment question (i.e., has covid-19 affected your mental health?) was added at the end. covid-19-related challenges in this section, participants were requested to indicate the level of fear, worry, and stress that they experienced related to eight covid-19 challenges under one of the three categories: intrapersonal factors (risk of being infected, academic program and future plans, and financial stress), interpersonal factors (risk of loved ones being infected, and lack of social support), and environmental factors (changes of learning mode, travelling restrictions and delays to application process of legal documents, and social exclusion/racist aggression). each item scored from 1 to 4, where 1 means no fear, worry and stress related to the challenges, 2 indicates a mild level of fear, worry and stress, 3 means a moderate level of fear, worry and stress, and 4 means a severe level of fear, worry and stress. one general assessment question (i.e., do you feel you are able to cope with the stress of the current situation adequately?) was attached at the end. coping strategies the survey included a list of coping strategies at the end, and participants were asked to select the coping strategy or strategies they used to deal with their negative feelings related to covid-19 over the past month. the items were: studying, working, ihtp, 2(3), 310-325, 2022 cc by-nc-nd 4.0 issn 2563-9269 313 sleeping, doing relaxation activities (e.g., meditations, sports, exercise, music), eating or cooking, playing video/mobile games, watching entertaining programs, online shopping, seeking support from family or friends, positive thinking, spiritual support, or other. data analysis statistical analysis was performed by using ibm statistical package for the social sciences (spss v.26.0). reliability and validity tests were assessed using cronbach’s alpha, and kaiser-meyer-olkin (kmo) and bartlett’s test, respectively. frequency tables were used to record the demographic characteristics of participants and the frequencies and mean values of perceived stress, anxiety, and depression symptoms. bivariate correlations were used to analyze the relationship between the severity of perceived stress, anxiety, and depression symptoms and whether covid-19 has affected students’ mental health. mann-whitney u-test and kruskal-wallis-test were applied to compare the severity of each symptom (i.e., normal perceived stress vs. high perceived stress, and none to mild anxiety and depression symptoms vs. moderate to severe anxiety and depression symptoms) between two or more demographic groups. the association of severity of perceived stress, anxiety and depression symptoms, covid19-related challenges, and the utilization of coping strategies were also examined by bivariate correlations. p-value < 0.05 was considered a significant level. ethics consideration toronto metropolitan university research ethics board approval was granted (reb 2021-413). all participants were requested to respond to the informed consent (i.e., do you agree to participate in the study? yes/no) before entering the survey. the informed consent indicated the purpose of the study, potential benefits and risks, participants’ right to skip questions and withdraw their consent at any point, and the confidentiality of the survey. results sample characteristics data were collected between november 1, 2021, to december 31, 2021, from 218 responses, of which 177 valid responses were included in our study. all participants were international postsecondary students in canada who were in full-time status and 18 years old or older, including 74 males (41.8%), 101 females (57.1%), and two unknowns (1.1%). of the 177 students, 81.9% were 18-25 years old (n = 145), 59.4% were from asia (n = 105), 61.6% (n = 109) were of asian origin, 90.4% were currently in canada at the time of the survey (n = 160), 68.4% (n = 121) were attending post-secondary institutions in central canada (i.e. ontario and quebec), 41.8% (n = 74) were studying medical or health-related programs, 84.2% (n = 149) were in the undergraduate studies, and 41.8% (n = 74) were in the final year of study (table 1). for the two general questions, 67.8% of the participants (n = 120) responded that covid-19 had affected their mental health, and 119 participants (67.2%) felt that they were able to cope with the stress of the current situation adequately. a cronbach's alpha of 0.868, suggest good internal consistency, and the kmo value of 0.890 (p = 0.00) is acceptable. mental health assessment based on pss-10-c and phq-4 results, 36.2% of the participants reported a high level of perceived stress, moderate to severe anxiety, and depression symptoms accounted for 64.4%. a positive correlation between severity of perceived stress (r = 0.242, p < 0.01), anxiety and depression symptoms ((r = 0.265, p < 0.01), and the response of mental health impacts of covid-19 on students was reported (table 2). students who responded that covid-19 had affected their mental health had higher perceived stress, anxiety, and depression symptoms. in addition, the levels of perceived stress, anxiety, and depression symptoms were significantly positively associated (r = 0.516, p < 0.01). compared to male students, female international students were associated with higher perceived ihtp, 2(3), 310-325, 2022 cc by-nc-nd 4.0 issn 2563-9269 314 stress (p = 0.015) and significantly more moderate to severe symptoms of anxiety and depression (p = 0.019). moreover, students currently in canada reported more moderate to severe anxiety and depression symptoms (p = 0.009) than those not in canada. however, these two groups had no significant difference in perceived stress. as well, compared to students who were not in the final year of study, students in the final year were significantly associated with higher perceived stress (p = 0.033). there was no significant difference in anxiety and depression symptoms between the two populations. covid19-related challenges assessment the three challenges students most frequently reported related to their mental health (score of 4) specifically travelling restrictions and/or delays in the application process of legal documents (n = 62), financial stress (n = 59), and fear and worry about the academic program and future (n = 53). a significant positive correlation between financial stress and the severity of anxiety and depression symptoms (r = 0.583, p < 0.01) was noted. in addition to financial stress, international students experiencing a lack of support were significantly associated with more severe anxiety and depression symptoms (r = 0.512, p < 0.01). social exclusion and/or racist aggression was also significantly associated with the severity of perceived stress (r = 0.509, p < 0.01) (table 3). coping strategies assessment the top five commonly used coping strategies included sleeping (n = 102), watching entertaining programs (n = 98), doing relaxation activities (n = 97), eating or cooking (n = 93), and playing video/mobile games (n = 91). the assessment of the use of coping strategies, perceived stress and anxiety and depression symptoms among students is summarized in table 4. moreover, students who used sleeping, eating, or cooking, and playing video/mobile games to cope with the pandemic were associated with lower perceived stress, anxiety, and depression symptoms (p < 0.01 for all). in addition, a positive correlation between working and severity of symptoms of anxiety and depression was observed among international university and college students (r = 0.164, p < 0.05). discussion to the best of our knowledge, our research is the first study to assess the mental health impacts of the covid-19 pandemic on international postsecondary students in canada and identify potential covid-19related challenges and coping strategies. our study revealed a higher prevalence of stress, anxiety, and depression symptoms among international students in canada amidst the pandemic. based on pss-10-c and phq-4, 36.2% and 64.4% of the students reported a high level of perceived stress and moderate to severe anxiety and depression, respectively. the results are consistent with similar studies carried out in other countries during the covid-19 pandemic. a survey of 1,000 international students at carleton university concluded that 55% and 50% of the respondents were at risk of depression and anxiety disorder, respectively (varughese & schwartz, 2022). the study by alam et al. (2021) demonstrated the high prevalence of stress (58.5%), anxiety (76.6%), and depression (73.4%) among international students in china, while 47.1%, 39.6%, and 49% of the international students in south korea universities reported sleep problems, anxiety, and depression (kim & kim, 2021). international university and college students have already been exposed to numerous challenges precovid-19. some of the pre-existing challenges include language and cultural barriers, racism and social exclusion, difficulties in obtaining study permits and visas, lack of social support, and financial stress, which can all contribute to poor mental health outcomes (lai et al., 2020; king et al., 2020; kim & kim, 2021). it is also worth noting that the severity of perceived stress, anxiety and depression symptoms among students may be underestimated in this study, as the survey was collected before the widespread of omicron, which could potentially have worsened the mental health crises globally. mental health assessments the covid-19 pandemic has negatively impacted the mental health of international postsecondary ihtp, 2(3), 310-325, 2022 cc by-nc-nd 4.0 issn 2563-9269 315 students in canada. participants (67.2%) who responded that covid-19 had affected their mental health had higher levels of stress, anxiety, and depression symptoms. in addition, there was a significant association between perceived stress level and severity of anxiety and depression symptoms. this finding corresponds with mental health study findings of international students studying in the uk and usa, where perceived stress, anxiety and depression, and insomnia symptoms were significantly correlated (lai et al., 2020). in this study, international female students were more likely to have higher perceived stress levels and more moderate to severe symptoms of anxiety and depression, which is consistent with the study by statistics canada (2020). moreover, chen & lucock (2020) elaborated that female university students in the uk were subject to higher levels of anxiety and depression than males, and one reason could be that "women fulfill the multiple roles in society that render them at greater risk of experiencing mental disorders" (mokhtari et al., 2013, p84). however, alam et al. (2021) observed that male international students studying in china were associated with more depressive, anxiety and fear symptoms during the pandemic, which may be attributed to that most participants in the study were males (84.6%). there was a higher possibility of a male student taking risky behaviours. this suggests an urgent need to address the mental health challenges of both male and female international students in canada, such as providing self-help strategies, risky behaviour management courses, and support groups. furthermore, our study demonstrated that international students staying in canada were associated with more moderate to severe symptoms of anxiety and depression than students who were not in canada at the time of the survey. this finding is consistent with another study where international students who stayed in the uk and usa were more likely to experience higher levels of perceived stress, anxiety, and depression symptoms than returnees (lai et al., 2020). finally, compared to students who were not in the final year of undergraduate or postgraduate study, final-year students reported higher perceived stress amid the pandemic, like findings of keane et al. (2021) on the mental health of final-year nursing students where students found challenging to manage the transition to work or continuing education. consequently, our study suggests that it is imperative to support international students' mental health, particularly for students who are staying in canada and/or in their final year of study. covid19-related challenges assessment all examined covid19-related challenges were significantly associated with higher levels of perceived stress and anxiety and depression symptoms among international students in canada (table 3). of which, travel restrictions and/or delays in the application process of legal documents, financial stress, and fear and worry about the academic program and future were the top three most frequently reported challenges by students to have severe levels of fear and worry. mainly, students facing financial stress and lack of social support (e.g., being far away from family and friends) were more likely to have moderate to severe anxiety and depression symptoms, while students experiencing social exclusion and/or racist aggression were at a greater risk of having a high level of perceived stress. during the pandemic, travelling restrictions and processing time delays have caused tremendous stress and frustration to students. all international students must hold a valid study or work permit and visitor visa to stay in canada legally; however, the processing times for all essential documents soared to multiple times the normal ten days to 10 weeks during the pandemic “due to the shortage of staff and resources, outdated immigration infrastructure and technology, and a lack of political action” (pratyush, 2021). in addition to processing time delays, the canadian government occasionally placed flight bans against some countries in 2020 and 2021 due to covid-19 outbreaks. for example, the canadian government suspended all flights from beijing and shanghai to canada on january 30, 2020 (cbc news, 2020) and banned indian flights on april 22, 2021 (bhattacharyya & chanda, 2021). as such, international students were hindered from entering, studying, or working in canada and felt the lack of provision for their academic programs and future, which in turn exacerbated the mental health challenges. as international students represented 17.8% of postsecondary enrolments in canada in the ihtp, 2(3), 310-325, 2022 cc by-nc-nd 4.0 issn 2563-9269 316 2019/2020 academic year (statistics canada, 2021a), it is suggested that the canadian government should mobilize their staff and resources more effectively as well as invest in updating and supporting the immigrant service, so that international students can study and work in canada as planned. furthermore, financial stress was another outstanding covid19-related challenge that was significantly associated with the severity of anxiety and depression symptoms of international students. according to statistics canada (2021b), domestic students pay an average of $6,693 and $7,472 for their undergraduate and graduate studies in the 2021/2022 academic year. in contrast, the corresponding tuition fees for international students range between $20,120 and $33,623. while international students face excessive tuition fees and high living expenses, their job opportunities are limited in canada (firang & mensah, 2022), particularly during the covid-19 pandemic. the finding reveals the need for canadian postsecondary institutions to support international students with more financial aid, scholarships, and on-campus part-time job opportunities. on the one hand, international students will be able to offset their financial stress and maintain good mental health; on the other hand, canada will continue to be an ideal destination to attract and retain international students in the future. in addition, the present study found a significant correlation between lack of social support and severity of anxiety and depression symptoms, social exclusion and/or racist aggression, and perceived stress levels. the results of this study correspond with lai et al. (2020), which concluded a lack of social support as a significant predictor of mental health among international students. in terms of social exclusion and/or racist aggression, it is noted that the covid-19 pandemic has intensified antiasian crises in north america, such as the racist term "china virus" and the tragic murder of eight people in atlanta, georgia, including six asian descants. such a societal illness would inevitably cause psychological damage to international students, and the canadian government and postsecondary institutions need to take immediate actions against it, including developing policies at schools and at the national level to protect students. coping strategies assessment the most used coping strategies among students were sleeping, watching entertaining programs, doing relaxation activities, eating, or cooking, and playing video/mobile games. students who utilized sleeping, eating, or cooking, and video and mobile gaming to cope with covid-19 were associated with lower levels of perceived stress, anxiety, and depression. a meta-analysis of randomized control trials on 8,608 participants observed that improved sleep quality could reduce stress, anxiety, and depression (scott et al., 2021), and the reverse may also be true where people experiencing underlying health conditions often encounter sleeping problems. as sleeping and mental health outcomes are intertwined, students are encouraged to have sufficient sleep and maintain regular sleep schedules. international students who used eating or cooking to cope with covid-19 was less likely to have high levels of perceived stress, anxiety, and depression in our study, which corresponds with utter et al. (2016) study on 8,500 adolescents in new zealand. however, it is inconsistent with lai et al. (2020) study in which a significant positive correlation between eating or cooking and severity of symptoms of anxiety and depression was found among international students in the united kingdom and the united states. the possible explanation may be that, although cooking could promote self-esteem and creativity to improve anxiety and depression symptoms, cooking too much and eating disorders are associated with psychological distress (farmer & cotter, 2021). moreover, video, and mobile gaming were negatively correlated to stress, anxiety, and depression among international students in our study; however, it is also alarming that problematic video gaming could lead to adverse mental health outcomes (von der heiden et al., 2019). we suggest that canadian universities and colleges should advise students on developing regular sleep patterns. the institutions should also guide the development of healthy cooking, eating, and gaming habits, as excessive practice of any of these activities could harm emotional well-being. limitations ihtp, 2(3), 310-325, 2022 cc by-nc-nd 4.0 issn 2563-9269 317 there are several limitations in our study. firstly, it was based on a small sample size of 177 participants due to time constraints, which may reduce the power of the study and lead to higher variability. secondly, even though the exponential, non-discriminative snowball sampling strategy helped locate international students cost-effectively, it was subject to non-random selection procedures that may not guarantee representative of the study population. another limitation was that 68.4% of the included participants were attending schools in central canada (i.e., ontario and quebec), and 61.6% were of asian origins; hence, the results may not be applicable to international students living in other regions in canada or coming from other cultures. in addition, since no comparative test was performed on the mental health status of domestic and international students in canada, it is not necessarily concluded that international students had worse symptoms of stress, anxiety, and depression during the pandemic. while no study on the mental health status of canadian international students amid the covid-19 pandemic has been documented, it is challenging to compare the study sample to a larger population which could further affect the robustness of the study. future studies are suggested to examine international students' mental health with a more diverse cultural background and living in provinces and territories across canada. researchers could also conduct a comparison study on the mental health assessments of domestic and international students attending post-secondary institutions in canada. implications our study findings have implications for canadian postsecondary institutions, governments, public health agencies. as mental health crises of both male and female international students have been amplified amid the pandemic, postsecondary institutions should provide more scholarship and oncampus job opportunities for international students to overcome financial burdens, create a more socially inclusive community for students to live and grow, encourage students to use self-help coping strategies, and assist students, particularly final-year international students, in transitioning from school to further education or work. in addition to universities and colleges, the canadian government should support mental health services at schools, ensure a fair labour market for both domestic and international students, formulate policies and punitive measures to respond to social exclusion at the national level, and invest in immigrant services to streamline study and work inquiries. lastly, as the covid-19 pandemic situation is rapid-changing and has profound impacts which go beyond individual mental health to the societal structure, public health professionals are encouraged to continue to monitor the mental health status of international students during and post covid-19, examine various covid19-related challenges and coping strategies, as well as delve into the structural determinants of mental health among international students in canada. conclusion our study implies the high prevalence of stress, anxiety and depression among international university and college students in canada, particularly female students, students who are in canada, and final-year students. besides, all covid19-related challenges are significantly related to perceived stress, anxiety and depression while sleeping, eating, or cooking, and video and mobile gaming could be beneficial for international students to cope with the pandemic. canadian postsecondary institutions, governments, and public health authorities should take immediate actions to support international students' mental health during the pandemic and beyond. acknowledgement the authors acknowledge and thank all students who participated in the study. references alam, m. d., lu, j., ni, l., hu, s., & xu, y. (2021). psychological outcomes and associated factors among the international ihtp, 2(3), 310-325, 2022 cc by-nc-nd 4.0 issn 2563-9269 318 students living in china during the covid-19 pandemic. frontiers in psychiatry, 12, 707342. https://doi.org/10.3389/fpsyt.2021. 707342 bhattacharyya, a., & chanda, a. (2021, june 21). canada extends india flight ban till july 21. hindustan times. available at: https://www.hindustantimes.com/worldnews/canada-extends-india-flight-ban-tilljuly-21-101624290876946.html [accessed 15 march 2022]. campo-arias, a., pedrozo-cortés, m. j., & pedrozopupo, j. c. (2020). pandemic-related perceived stress scale of covid-19: an exploration of online psychometric performance. revista colombiana de psiquiatría, 49(4), 229230. https://doi.org/10.1016/j.rcp.2020.05.0 05 cbc news. (2020, januart 29). air canada suspends all flights to beijing and shanghai amid coronavirus outbreak. available at: https://www.cbc.ca/news/business/coronavi rus-air-travel-1.5444326 [accessed 15 march 2022]. chen, t., & lucock, m. (2022). the mental health of university students during the covid-19 pandemic: an online survey in the uk. plos one, 17(1), e0262562e0262562. https://doi.org/10.1371/journal.p one.0262562 essadek, a., & rabeyron, t. (2020). mental health of french students during the covid 19 pandemic. journal of affective disorders, 277, 392393. https://doi.org/10.1016/j.jad.2020.08.0 42 farmer, n., & cotter, e. w. (2021). well-being and cooking behavior: using the positive emotion, engagement, relationships, meaning, and accomplishment (perma) model as a theoretical framework. frontiers in psychology, 12, 560578560578. https://doi.org/10.3389/fpsyg.2021. 560578 firang, d., & mensah, j. (2022). exploring the effects of the covid-19 pandemic on international students and universities in canada. journal of international students, 12(1), 118. https://doi.org/10.32674/jis.v12i1.2881 government of canada. (2022, march 25. work in canada after you graduate: who can apply. available at: https://www.canada.ca/en/immigrationrefugees-citizenship/services/studycanada/work/aftergraduation/eligibility.html [accessed 15 march 2022]. government of canada. (2019, january 06). study permits: other considerations. https://www.canada.ca/en/immigrationrefugees-citizenship/corporate/publicationsmanuals/operational-bulletinsmanuals/temporary-residents/studypermits/other-considerations.html [accessed 16 march 2022]. haliwa, i., spalding, r., smith, k., chappell, a., & strough, j. (2021). risk and protective factors for college students' psychological health during the covid-19 pandemic. journal of american college health, , 15. https://doi.org/10.1080/07448481.2020.1 863413 hwang, t., rabheru, k., peisah, c., reichman, w., & ikeda, m. (2020). loneliness and social isolation during the covid-19 pandemic. international psychogeriatrics, 32(10), 12171220. https://doi.org/10.1017/s1041610220 000988 keane, c., waldeck, d., holliman, a., goodman, s., & choudhry, k. (2021). exploring the experience of anxiety among final year students at university: a thematic analysis. qualitative report, 26(8), 0_12630. https://doi.org/10.46743/21603715/2021.4874 kim, h. r., & kim, e. j. (2021). factors associated with mental health among international students during the covid-19 pandemic in south korea. international journal of environmental research and public health, 18(21), 11381. https://doi.org/10.3390/ijerph18211 1381 king, j. a., cabarkapa, s., leow, f. h., & ng, c. h. (2020). addressing international student mental health during covid-19: an https://doi.org/10.3389/fpsyt.2021.707342 https://doi.org/10.3389/fpsyt.2021.707342 https://www.cbc.ca/news/business/coronavirus-air-travel-1.5444326 https://www.cbc.ca/news/business/coronavirus-air-travel-1.5444326 https://www.canada.ca/en/immigration-refugees-citizenship/corporate/publications-manuals/operational-bulletins-manuals/temporary-residents/study-permits/other-considerations.html https://www.canada.ca/en/immigration-refugees-citizenship/corporate/publications-manuals/operational-bulletins-manuals/temporary-residents/study-permits/other-considerations.html https://www.canada.ca/en/immigration-refugees-citizenship/corporate/publications-manuals/operational-bulletins-manuals/temporary-residents/study-permits/other-considerations.html https://www.canada.ca/en/immigration-refugees-citizenship/corporate/publications-manuals/operational-bulletins-manuals/temporary-residents/study-permits/other-considerations.html https://www.canada.ca/en/immigration-refugees-citizenship/corporate/publications-manuals/operational-bulletins-manuals/temporary-residents/study-permits/other-considerations.html https://doi.org/10.3390/ijerph182111381 https://doi.org/10.3390/ijerph182111381 ihtp, 2(3), 310-325, 2022 cc by-nc-nd 4.0 issn 2563-9269 319 imperative overdue. australasian psychiatry : bulletin of the royal australian and new zealand college of psychiatrists, 28(4), 469469. https:/doi.org/10.1177/1039856220926934 lai, a. y., lee, l., wang, m., feng, y., lai, t. t., ho, l., lam, v. s., ip, m. s., & lam, t. (2020). mental health impacts of the covid19 pandemic on international university students, related challenges, and coping strategies. frontiers in psychiatry, 11, 584240584240. https://doi.org/10.3389/fpsyt.2020. 584240 lee, j., solomon, m., stead, t., kwon, b., & ganti, l. (2021). impact of covid-19 on the mental health of us college students. bmc psychology, 9(1), 195. https://doi.org/10.1186/s40359-02100598-3 li, y., zhao, j., ma, z., mcreynolds, l. s., lin, d., chen, z., wang, t., wang, d., zhang, y., zhang, j., fan, f., & liu, x. (2021). mental health among college students during the covid-19 pandemic in china: a 2-wave longitudinal survey. journal of affective disorders, 281, 597604. https://doi.org/10.1016/j.jad.2020.11.1 09 löwe, b., wahl, i., rose, m., spitzer, c., glaesmer, h., wingenfeld, k., schneider, a., & brähler, e. (2009). a 4-item measure of depression and anxiety: validation and standardization of the patient health questionnaire-4 (phq-4) in the general population. journal of affective disorders, 122(1), 8695. https://doi.org/10.1016/j.jad.2009.06.01 9 mokhtari, m., dehghan, s. f., asghari, m., ghasembaklo, u., mohamadyari, g., azadmanesh, s. a., & akbari, e. (2013). epidemiology of mental health problems in female students: a questionnaire survey. journal of epidemiology and global health, 3(2), 8388. https://doi.org/10.1016/j.jegh.2013.02.0 05 patsali, m. e., mousa, d. v., papadopoulou, e. v. k., papadopoulou, k. k. k., kaparounaki, c. k., diakogiannis, i., & fountoulakis, k. n. (2020). university students’ changes in mental health status and determinants of behavior during the covid19 lockdown in greece. psychiatry research, 292, 113298113298. https://doi.org/10.1016/j.psychres. 2020.113298 pratyush, d. (2021, december 07). ongoing immigration-processing delays leave many in limbo in canada and overseas. cbc. https://www.cbc.ca/news/canada/saskatoon /delays-across-immigration-streams-leavemany-in-limbo-in-canada-and-overseas1.6275084 [accessed 16 march 2022]. salari, n., hosseinian-far, a., jalali, r., vaisi-raygani, a., rasoulpoor, s., mohammadi, m., rasoulpoor, s., & khaledi-paveh, b. (2020). prevalence of stress, anxiety, depression among the general population during the covid-19 pandemic: a systematic review and meta-analysis. globalization and health, 16(1), 5757. https://doi.org/10.1186/s12992-02000589-w scott, a. j., webb, t. l., martyn-st james, m., rowse, g., & weich, s. (2021). improving sleep quality leads to better mental health: a meta-analysis of randomised controlled trials. sleep medicine reviews, 60, 101556101556. https://doi.org/10.1016/j.smrv.2021 .101556 sher, l. (2020). the impact of the covid-19 pandemic on suicide rates. qjm : monthly journal of the association of physicians, 113(10), 707. https://doi.org/10.1093/qjmed/hcaa20 2 son, c., hegde, s., smith, a., wang, x., & sasangohar, f. (2020). effects of covid-19 on college students' mental health in the united states: interview survey study. journal of medical internet research, 22(9), e21279e21279. https://doi.org/10.2196/21279 statistics canada. (2021a, november 24). prior to covid-19, international students accounted for the growth in postsecondary enrolments and graduates. https://www150.statcan.gc.ca/n1/dailyhttps://www.cbc.ca/news/canada/saskatoon/delays-across-immigration-streams-leave-many-in-limbo-in-canada-and-overseas-1.6275084 https://www.cbc.ca/news/canada/saskatoon/delays-across-immigration-streams-leave-many-in-limbo-in-canada-and-overseas-1.6275084 https://www.cbc.ca/news/canada/saskatoon/delays-across-immigration-streams-leave-many-in-limbo-in-canada-and-overseas-1.6275084 https://www.cbc.ca/news/canada/saskatoon/delays-across-immigration-streams-leave-many-in-limbo-in-canada-and-overseas-1.6275084 https://doi.org/10.1186/s12992-020-00589-w https://doi.org/10.1186/s12992-020-00589-w https://www150.statcan.gc.ca/n1/daily-quotidien/211124/dq211124d-eng.htm ihtp, 2(3), 310-325, 2022 cc by-nc-nd 4.0 issn 2563-9269 320 quotidien/211124/dq211124d-eng.htm [accessed 16 march 2022]. statistics canada. (2021b, september 08). canadian and international tuition fees by level of study. https://www150.statcan.gc.ca/t1/tbl1/en/tv. action?pid=3710004501 [accessed 16 march 2022]. statistics canada. (2020, july 09). gender differences in mental health during the covid-19 pandemic. https://www150.statcan.gc.ca/n1/pub/4528-0001/2020001/article/00047-eng.htm [accessed 15 march 2022]. utter, j., phd, denny, simon, phd, fracp, lucassen, m., phd, & dyson, b., phd. (2016). adolescent cooking abilities and behaviors: associations with nutrition and emotional well-being. journal of nutrition education and behavior, 48(1), 3541.e1. https://doi.org/10.1016/j.jneb.2015.0 8.016 von der heiden, j. m., braun, b., müller, k. w., & egloff, b. (2019). the association between video gaming and psychological functioning. frontiers in psychology, 10, 17311731. https://doi.org/10.3389/fpsyg.2019.01 731 varughese, a. & schwartz, s. (2022, january 24). the pandemic exposed the vulnerability of international students in canada. https://newsroom.carleton.ca/story/pandem ic-international-students-vulnerability/ [accessed 02 august 2022] vindegaard, n., & benros, m. e. (2020). covid-19 pandemic and mental health consequences: systematic review of the current evidence. brain, behavior, and immunity, 89, 531542. https://doi.org/10.1016/j.bbi.2020.05.0 48 wang, x., hegde, s., son, c., keller, b., smith, a., & sasangohar, f. (2020). investigating mental health of us college students during the covid-19 pandemic: cross-sectional survey study. journal of medical internet research, 22(9), e22817e22817. https://doi.org/10.2196/22817 wu, t., jia, x., shi, h., niu, j., yin, x., xie, j., & wang, x. (2020). prevalence of mental health problems during the covid-19 pandemic: a systematic review and metaanalysis. journal of affective disorders, 281, 9198. https://doi.org/10.1016/j.jad.2020.11.11 7 world health organization. (2022, august 5). who coronavirus (covid-19) dashboard. https:/covid19.who.int. [accessed 5 august 2022]. xiong, j., lipsitz, o., nasri, f., lui, l. m. w., gill, h., phan, l., chen-li, d., iacobucci, m., ho, r., majeed, a., & mcintyre, r. s. (2020). impact of covid-19 pandemic on mental health in the general population: a systematic review. journal of affective disorders, 277, 5564. https://doi.org/10.1016/j.jad.2020.08.00 1 https://www150.statcan.gc.ca/n1/daily-quotidien/211124/dq211124d-eng.htm https://www150.statcan.gc.ca/t1/tbl1/en/tv.action?pid=3710004501 https://www150.statcan.gc.ca/t1/tbl1/en/tv.action?pid=3710004501 https://www150.statcan.gc.ca/n1/pub/45-28-0001/2020001/article/00047-eng.htm https://www150.statcan.gc.ca/n1/pub/45-28-0001/2020001/article/00047-eng.htm https://newsroom.carleton.ca/story/pandemic-international-students-vulnerability/ https://newsroom.carleton.ca/story/pandemic-international-students-vulnerability/ ihtp, 2(3), 310-325, 2022 cc by-nc-nd 4.0 issn 2563-9269 321 table 1. demographic characteristics (n = 177) variables categories frequency (%) sex male 74 (41.8%) female 101 (57.1) prefer not to answer 2 (1.1%) age 18-25 years old 145 (81.9%) 25+ years old 31 (17.5%) unknown 1 (0.6%) geographical regions, world africa 5 (2.8%) asia 105 (59.4%) europe 3 (1.7%) the americas 30 (16.9%) unknown 34 (19.2%) ethnicity african origins 6 (3.4%) asian origins 109 (61.6%) caribbean origins 5 (2.8%) european origins 19 (10.7%) latin, central and south american origins 13 (7.3%) oceania origins 4 (2.3%) multiethnic 1 (0.6%) north american origins 13 (7.3%) other 7 (4.0%) currently in canada yes 160 (90.4%) ihtp, 2(3), 310-325, 2022 cc by-nc-nd 4.0 issn 2563-9269 322 no 17 (9.6%) geographic regions of school, canada western (bc, ab, sk, mb) 35 (19.8%) central (on, qc) 121 (68.4%) atlantic (nb, pei, ns, nfl) 10 (5.6%) northern (yk, nwt, nvt) 11 (6.2%) field of study medical or health related 74 (41.8%) other 103 (58.2%) level of study undergraduate 149 (84.2%) postgraduate 28 (15.8%) final year of study yes 74 (41.8%) no 100 (56.5%) not sure 3 (1.7%) has covid-19 affected your mental health yes 120 (67.8%) no 57 (32.2%) do you feel you are able to adequately cope with the stress of the current situation yes 119 (67.2%) no 58 (32.8%) ihtp, 2(3), 310-325, 2022 cc by-nc-nd 4.0 issn 2563-9269 323 table 2. association between severity of symptoms and impact on mental health v1 v2 v3 v1 1 v2 0.516** 1 v3 0.242** 0.265** 1 **. correlation is significant at the 0.01 level (2-tailed). *. correlation is significant at the 0.05 level (2-tailed). v1: severity of perceived stress v2: severity of anxiety and depression symptoms v3: has covid-19 affected your mental health ihtp, 2(3), 310-325, 2022 cc by-nc-nd 4.0 issn 2563-9269 324 table 3. association between indicators of fear and worry and severity of perceived stress, anxiety and depression symptoms indicators of fear and worry severity of perceived stress severity of anxiety and depression symptoms risk of being infected r 0.407** 0.417** fear and worry about your academic program and future plans r 0.413** 0.480** financial stress r 0.497** 0.583** risk of loved ones being infected r 0.378** 0.482** lack of social support r 0.473** 0.512** changes of learning mode r 0.388** 0.238** travelling restrictions and/or delays to application process of legal documents r 0.351** 0.255** social exclusion and/or racist aggression r 0.509** 0.481** **. correlation is significant at the 0.01 level (2-tailed) *. correlation is significant at the 0.05 level (2-tailed) ihtp, 2(3), 310-325, 2022 cc by-nc-nd 4.0 issn 2563-9269 325 table 4: association between coping strategies and severity of perceived stress; anxiety and depression symptoms coping strategies severity of perceived stress severity of anxiety and depression symptoms has covid-19 affected your mental health studying r 0.053 0.020 0.004 working r 0.074 0.164* -0.014 sleeping r -0.330** -0.355** -0.004 doing relaxation activities r -0.002 -0.095 0.079 eating or cooking r -0.321** -0.351** -0.062 playing video/mobile games r -0.351** -0.333** -0.225** watching entertaining programs r -0.081 -0.057 0.030 online shopping r -0.038 -0.068 -0.052 seeking support from family/friends r 0.028 -0.086 0.031 positive thinking r 0.076 -0.022 0.003 spiritual support r 0.074 -0.063 0.061 other – shower r -0.022 -0.059 0.103 other – therapy r 0.020 0.032 0.116 other – sports r 0.031 0.025 0.074 **correlation is significant at the 0.01 level (2-tailed). *correlation is significant at the 0.05 level (2-tailed). 352 ihtp, 2(3), 352-370, 2022 cc by-nc-nd 4.0 issn 2563-9269 the mental well-being of children and adolescents during the covid-19 pandemic: a systematic review of qualitative literature s. p. k. j. subasinghe1, a. m. shyama deepanie pathiranage1 1department of nursing, faculty of allied health sciences, university of peradeniya, sri lanka corresponding author: s. p. k. j. subasinghe (kalpanasubasinghe1116@gmail.com) abstract covid-19 has led to significant isolation resulting in a rise in educational inequity and mental illness among youth. a systematic literature review of qualitative studies was conducted adhering to prisma 2020 guidelines, to describe the mental wellbeing of children and adolescents during the covid-19 pandemic. the protocol has been registered in the prospero international prospective register of systematic reviews. three electronic databases were searched for original, qualitative, peer-reviewed, full text, english journal articles published from december 2019to may 2020, conducted among children and their parents. we extracted the results that describe the psychological impact on children and their parents amidst covid-19 thirteen studies were included in the final review. four major themes (1. negative and maladaptive behavior 2. social and psychological disruption 3. emotion regulation 4. value of family time) were identified through inductive thematic synthesis. although children regulate their emotions effectively, most of the children seem to experience maladaptive behaviors which may have a devastating effect on their development. health care professionals, caregivers, school officials, and social workers should address these aspects of childcare during a pandemic and in the post-pandemic period. keywords child, covid-19, healthcare delivery, mental health, sri lanka introduction the novel corona virus (covid-19) was originated in the province of hubei in china on 31st december. it was first reported as a confirmed case of pneumonia of unknown etiology and later declared as a global pandemic and a public health emergency by world health organization (who) (world health organization, 2020). since this disease is known to be transmitted by respiratory droplets of an infected person and causes fatal pneumonia, it has become a prime consideration of health authorities worldwide. every country around the globe started implementing strategies to prevent disease transmission. the world economy was falling drastically during the pandemic (kumar, 2020). country boundary closures, quarantine policies, lockdown policies, social distancing guidelines, and health precaution guidelines have been issued worldwide. as a social distancing strategy, all the educational institutions were closed worldwide and the child and adolescent population were confined to their homes (bayham & fenichel, 2020; grimm, 2021; viner et al., 2020). prolonged home confinement due to a pandemic pose risk of serious mental issues in people. the victims of a pandemic may develop depression, posttraumatic stress disorder, and anxiety disorders (torales et al., 2020). studies have shown that the lack of social interactions for prolonged period make people at risk of getting suicidal ideas, and further reported that these rates are higher in women than men (yamamoto et al., 2022). another study reported that depression and other social isolation outcomes were significantly associated with gender, young people, financial 353 ihtp, 2(3), 352-370, 2022 cc by-nc-nd 4.0 issn 2563-9269 status, and conflicting relationships (moura et al.,2022). longer quarantine durations have led to reported fear and frustration, boredom, and stresses due to loss of supplies and support (brooks et al., 2020). unprivileged communities will face food insecurities, economic crises, and a lack of access to health care providers (corburn et al., 2020). children and adolescents (referred to as children hereafter) have been affected much more than others. with extended school and university closure, they have fuel feelings of anxiety, uncertainty and loneliness and lead to affective and behavioral problems. although it is hardly studied, children and adolescents (referred to as children hereafter) have become a vulnerable population during a pandemic. children are undergoing educational inequities and various health problems such as weight gain, loss of school vaccination, and mental instabilities during school closures (armitage & nellums, 2020; rundle et al., 2020). sedentary lifestyles have put them at risk of developing non-communicable diseases (stockwell et al., 2021). previous literature has stated that children face mental crises during a pandemic due to being isolated from their peer groups and when confined to their home with only their families (ramchandani,2020; wang et al., 2020). parental negative feelings, activity restrictions, and stress will have negative consequences on the well-being of children (achterberg et al., 2020). with prolonged school closure, every educational institute is diverting into remote learning, distance learning, and online learning. children experience extra burdens when continuing their studies in this era due to lack of access to new technology, low internet quality, low resources at home, and difficulty of managing available technical devices and learning aids (garbe et al., 2020). social distancing policies have exposed the child population to prolonged stress and anxiety. since brain studies have shown that prolonged stress exposure will have serious negative effects on the development of the child, the psychological wellbeing of a child during this era should be studied (panda et al., 2020; romeo, 2017). public health authorities and clinicians need to have an accurate estimate of the nature, severity, and extent of these behavioral abnormalities and psychopathologies, both in typically developing children and children experiencing behavioral abnormalities, as well as their caregivers. although many studies from different parts of the globe have tried to address the impact of the covid19 pandemic on the mental health of children and adolescents, the prevalence and severity of these psychopathologies seem to vary widely. existing studies are sometimes criticized because they have small sample sizes which limit their reliability and practical application. we conducted a systematic review of qualitative literature intending to strengthen our understanding of the mental wellbeing of children, teenagers, and adolescents amidst the covid-19 pandemic. the studies that report experiences, perceptions, feelings, and observations related to the psychological well-being of the children, teenagers, and adolescents were included in the review. we used stringent criteria to make sure that the voices of children and parents affected by the covid19 pandemic were included. methods the protocol of this review has been registered in prospero international prospective register of systematic reviews under the registration numbercrd42021262628. we have followed the protocol of prisma (preferred reporting items for systematic review and meta-analysis) 2020. all the elements of the prisma 2020 statement have been addressed when developing the protocol and throughout the study (page et al., 2021; page et al., 2020). the reviewing of studies was carried out from april 2021-august 2021. study design studies were selected and excluded according to the spider (sample, phenomenon of interest, design, evaluation, research type) tool (cooke, smith & booth, 2012). inclusion criteria the sample was healthy children (not diagnosed with any psychological disorder) aged from 1 year to 18 years old and their parents. the phenomenon of interest was experiences, perceptions, feelings, and observations related to the psychological well-being of the selected population during the covid-19 pandemic. research designs were qualitative (e.g., 354 ihtp, 2(3), 352-370, 2022 cc by-nc-nd 4.0 issn 2563-9269 through grounded theory, ethnography, phenomenology, action participatory research, interviews, focus groups, questionnaires with openended questions). mixed methods studies were considered for inclusion if they report qualitative data. studies that include stress or anxiety behavior during the covid19 pandemic as a sub-analysis or secondary analysis were considered for inclusion. the evaluation was qualitative reporting of psychological impact during the covid-19 pandemic. the research type was original, full-text journal articles published in the english language from 2019 december to 2021 may. search strategy a literature search was conducted in three electronic databases (medline pubmed, cinahl, sciencedirect) independently by the two investigators. google scholar through hinari access by who was used to find grey literature relevant to the topic. boolean algorithms using the keywords; mental health, psychological well-being, adolescents, children, teenagers, covid-19, corona virus pandemic were used. the search strategy was first piloted in medline pubmed and appropriately modified to each database. duplicates were removed using mendeley referencing manager software. terms were searched in title/abstract. the abstract screening was done after the initial search to find relevant articles. if abstract screening did not provide sufficient information for inclusion and exclusion, the full text was read. reference lists of included studies were searched to identify additional papers. relevant literature already known to authors was also screened for inclusion. quality appraisal assessment of the quality of the selected studies was guided using the joanna briggs institute (jbi) quality appraisal tool for qualitative research; and was conducted by both members of the research team independently (spkj, amsd). the findings were reviewed and discussed until a final consensus was reached. there were no cases of disagreement. however, should there have been any disagreement, a researcher, external to the research team would have been consulted. this tool is a checklist consisting of ten questions. for each question the reviewer selected between the answer choices: yes; no; unclear; not applicable. a score of 1 was allocated for each statement if the study fulfilled the relevant criteria. data collection and analysis jbi qari-data extraction tool for qualitative research (mcinnes & wimpenny, 2008) guided the data extraction. the following data were extracted: population, context, culture, geographical location, study methods, and the phenomena of interest relevant to the review question and specific objectives, data analysis methods, and findings in the form of themes, observations, and illustrations were extracted. findings that describe the psychological impact, emotions, feelings, and experiences of children, adolescents, and teenagers, during the covid-19 pandemic, were extracted from the included articles.data were entered independently by one investigator, and then independently reviewed by a second investigator. following the completion of data entry, the two investigators met to discuss extracted data; disagreements were resolved by consensus. the inductive thematic synthesis was used for data synthesis (thomas & harden, 2008). repeated reading of the text line by line was done independently by the two reviewers (spkj, amsd) to identify codes and themes manually. thematic synthesis utilizes a three-stage method for data synthesis: (1) free coding of findings in the included studies, (2) organizing data into descriptive themes, and (3) generating analytical themes that combine the findings of individual studies into interpretations that cross the findings of the studies. in parallel to this, the findings of each study were analyzed using nvivo by amsd, and themes identified by both methods were discussed in a meeting to arrive at a final agreement. appendix 01 is available online to describe the identification of codes and categories. results a total of 4127 full-text, english, journal articles were identified. after the removal of duplicates 4101 remained. grey literature search identified 4 relevant articles. during title/abstract screening 3987 were excluded due to: reviews and systematic reviews (n=425), meta-analysis (n=11), clinical trials (n=30), case reports (n=66), editorials (n=61), commentaries and brief communications (n= 76), quantitative studies (n=3318). from the remaining 118 studies, 13 355 ihtp, 2(3), 352-370, 2022 cc by-nc-nd 4.0 issn 2563-9269 studies that met inclusion criteria were included after reviewing the full texts. in total, 105 articles were excluded due to: the study population being the schoolteachers, children with mental illness, and describing only covid-19 precaution guidelines. the two reviewers agreed to include articles of medium or high quality for the final review. out of the final 13 articles, 2 articles were medium quality and 11 were high quality (figure 1). an overview of the selected papers is presented in table 1. following the analysis process the following themes were identified: negative and maladaptive behavior, social and psychological disruption, emotion regulation, value of family time. the summary of the final core themes and the descriptive themes identified is represented in table 2. negative and maladaptive behavior most parents complained that children’s behavior has been changed negatively during the time of home confinement. because of the inability to play outside with friends their mobility has decreased. disruption to the usual daily routine of the children resulted in changes in their eating behaviors and sleep patterns. “the lack of physical activities of the children due to their inability to play outside has changed their usual daily routine.” “…. they are wasting their time playing games. sleeping and waking up late is a habit (now). there aren’t many (physical) games at home and the kids have also started eating more.” (bhamani et al., 2020) “i was playing a game alone or with my friends outside the home before corona, but now i play a video game after a corona.” (abdulah et al., 2020) together with that children have become anxious when transitioning to the new environment and new routines. compared to adults, children have a lower capacity of adapting to a new environment or a routine. therefore, they exhibit unusual behaviors during this transition. since they spent more time with their parents, they displayed behaviors such as being demanding and more clingy than usual. children exhibited maladaptive behaviors due to the lack of their usual playtime, being depressed, and lonely. a parent of a 3-year-old girl said she was “more subdued and wants to go to bed more often” (egan et al., 2021) he is a lot more demanding, and his behaviors have reverted to that of a younger child. ……… “very out-going and loved seeing her friends” before lockdown. as a result of lockdown , however, her daughter “has become very attached to mum and is cautious at first when she sees someone out of the family or home” (egan et al., 2021) according to fitzpatrick et al. (2020), the most significant issue of the children identified by the caregivers was ‘misbehavior’. impulsivity and needing attention were also commonly reported. “i’d say he would miss the social aspect . . . we have observed certain things, certain behavioral changes, not big things, but just there’s more frustration from being home all the time” (o’sullivan et al., 2021). “… went backward and he was starting to bed wet again” “.. he’s an absolute nightmare or beating up his sister, one or the other” (o’sullivan et al., 2021) social and psychological disruption with the pandemic, children may have depression with the fear of getting infected and fear of their family members being infected and hospitalized. “there is corona everywhere outside the house. i am so depressed now………. it is so strong to infect my family members” (abdulah et al., 2020) the parent of an 8-year-old boy said, “he has become very moody and lazy”. “it’s because he gets bored a little being locked down” (valadez et al., 2020) children are emotionally vulnerable, and this made the lack of their usual social life with friends and peer groups affect their mental well-being. “i feel sad because i can’t see my friends and cousins.” “sad because i don’t see my cousins.” “sad because i can’t share with my friends.” (valadez et al., 2020) 356 ihtp, 2(3), 352-370, 2022 cc by-nc-nd 4.0 issn 2563-9269 “yeah, i think that kills them the most with not having any social time, not seeing their schoolmates.” “he went really into himselfreally shy, now that has all completely turned back around, he is back to his old self now” (o’sullivan et al., 2021). lack of social interactions even placed the children at risk of developing symptoms of mental disorders. “our moods were very low. he was very tearful. at one stage he even asked me to get a counselor. that’s how depressed he was getting.” (o’sullivan et al., 2021) scott et al. (2020) reports several results related to “disruption to social interactions” (participant 1,910), “not able to see anyone” (participant 1,704) “finding alone time” (participant 1,685) “feeling alone, isolation” emotion regulation as explained by cátiabranquinho et al. (2020), many teenagers engaged in pleasurable activities as coping strategies. “children engage in video calls with friends to cope up with the boredom and loneliness.” “...spends more time on a device as she can talk with her friends that way.” (cátiabranquinhoet al., 2020) spending more time with the family also helps them to avoid stress during the pandemic. “there is more tv... but always as a family”. (carroll et al., 2020) some teenagers have found writing letters to their friends excited during the lockdown and it has helped them to distract from their negative feelings “whenever you do get a letter, it’s quite exciting . . . it was kind of like the thrill of it.” (scott et al., 2020) value of family time many studies have identified this home confinement as an opportunity for family members to strengthen their bonds. “i like to be at home and playing with the family also makes me very happy” (girl, 9 years); “i feel happy and cheerful at home with my parents”. “i especially like it when it’s eight o’clock in the evening and we go out to the balcony to clap for the doctors and people are singing and dancing, and it’s very nice” (idoiaga mondragon et al., 2020) “we do more things together”, “we play cards, we cook together” “we spend more time-sharing ideas”, “we’re closed”, “the quality of our relationship has improved” (ares et al., 2021) discussion this study has identified important aspects on the mental well-being of children and their families during a social isolation. since the parents and the guardians also have been confined at home, changes in the usual behavior of children may have effects on the health of the caregivers as well. parents may feel exhausted since they must deal with unusual behaviors such as being clingy all day, being demanding, and aggressive. previous studies have identified that parents have become stressed during home confinement amidst the pandemics when they were unable to provide the necessary facilities which were needed to fulfill the demands of the child (marchetti et al., 2020; orgilés et al., 2020; spinelli, lionetti, pastore et al., 2020). on the other hand, parental stress will again have detrimental effects on the child’s psychological wellbeing and their behavior. the working parents may find this more disturbing. parents who work in the health care force and essential services during a lockdown must balance the stressful environment at work and at home. the fear of infecting their children may induce anxiety. mothers may find parenting more demanding at this time since they are the primary caregivers of children. some parents had to work from home during the lockdown. sharing personal space at home may have become a huge problem for some families. parents may have had to concurrently complete childcare activities while meeting the demands of their job. 357 ihtp, 2(3), 352-370, 2022 cc by-nc-nd 4.0 issn 2563-9269 this has been identified as a major factor for parental stress by other studies (spinelli, lionetti, setti et al., 2020). children were unable to keep track of the passage of time due to the changes in their usual daily routine. this has disturbed their sleeping patterns. parents have reported that they spend more time in bed or rarely sleep on time. another study has explained the fact that home confinement during the covid-19 pandemic has changed the sleep quality of both children and their parents(cellini et al., 2020). parents have complained that the screen time of the children also has increased, and they have tended to play video games more. this may develop into internet addiction in the future if proper guidance will not be given to them. previous literature has shown that there is a strong relationship between playing video games, internet addiction, and psychological disorders such as attention deficit hyperactive disorder (adhd) among children (king et al., 2012; yoo et al., 2004). therefore, we can say that this home confinement may bring devastating effects on child’s mental health and their development. a promising finding is that despite these difficulties, children were able to identify various activities to cope with their emotions during home confinement. this is a significant finding and school officials, stakeholders, and caregivers could promote such activities for the children in a future pandemic. having an opportunity to enhance family bonds is a positive aspect of this difficult time. family time, or “doing things together,” is an important way to cope with emotional breakdowns. this time may have enabled them to manage everyday challenges and to connect with other family members and their feelings during the lockdown. conversations with the parents and siblings may allow the children to express their fears and concerns about being home confined and getting infected. this expression of feelings may reduce their anxiety levels as well. limitations the literature search is limited to three electronic databases. conclusion and recommendation the findings of this review highlight the impact of home confinement due to the covid-19 pandemic on children. these findings are important for mental health care staff and maximizing opportunities for building resilience in affected children. key issues of concern include the provision of timely and ageappropriate information, and the provision of support to both parents and children to assist in the development of appropriate coping and support mechanisms. a family-centered approach is essential in planning each intervention. there is also a need to raise awareness among mental health staff of children’s needs through training and educational programs which promote children’s mental health in future pandemics. tele-health programs and tele-counselling programs can be implemented as strategies to reach these vulnerable populations if such social distancing policies imposed in future pandemics. references abdulah, d. m., abdulla, b. m., & liamputtong, p. (2020). psychological response of children to home confinement during covid-19: a qualitative arts-based research. international journal of social psychiatry, 002076402097243. https://doi.org/10.117 7/0020764020972439 achterberg, m., dobbelaar, s., boer, o. d., & crone, e. (2020). perceived stress as mediator for longitudinal effects of the covid-19 lockdown on wellbeing of parents and children. https://doi.org/10.31234/osf.io/ pj3sg ares, g., bove, i., vidal, l., brunet, g., fuletti, d., arroyo, á., & blanc, m. v. (2021). the experience of social distancing for families with children and adolescents during the coronavirus (covid-19) pandemic in uruguay: difficulties and opportunities. children and youth services review, 121, 105906. https://doi.org/10.1016/j.childyo uth.2020.105906 armitage, r., & nellums, l. b. (2020). considering inequalities in the school closure response to covid-19. the lancet global health, 8(5), https://doi.org/10.1177/0020764020972439 https://doi.org/10.1177/0020764020972439 https://doi.org/10.31234/osf.io/pj3sg https://doi.org/10.31234/osf.io/pj3sg https://doi.org/10.1016/j.childyouth.2020.105906 https://doi.org/10.1016/j.childyouth.2020.105906 358 ihtp, 2(3), 352-370, 2022 cc by-nc-nd 4.0 issn 2563-9269 e644. https://doi.org/10.1016/s2214109x(20)30116-9 bayham, j., & fenichel, e. p. (2020). impact of school closures for covid-19 on the us health-care workforce and net mortality: a modelling study. the lancet public health, 5(5), e271e278. https://doi.org/10.1016/s24682667(20)30082-7 bhamani, s., makhdoom, a. z., bharuchi, v., ali, n., kaleem, s., & ahmed, d. (2020). home learning in times of covid: experiences of parents. journal of education and educational development, 7(1), 9. https://doi.org/10.22555/joeed.v7i1.326 0 brooks, s. k., webster, r. k., smith, l. e., woodland, l., wessely, s., greenberg, n., & rubin, g. j. (2020). the psychological impact of quarantine and how to reduce it: rapid review of the evidence. the lancet, 395(10227), 912920. https://doi.org/10.1016/s01406736(20)30460-8 carroll, n., sadowski, a., laila, a., hruska, v., nixon, m., ma, d. w., & haines, j. (2020). the impact of covid-19 on health behavior, stress, financial and food security among middle to high income canadian families with young children. nutrients, 12(8), 2352. https://doi.org/10.3390/nu1208235 2 cellini, n., di giorgio, e., mioni, g., & di riso, d. (2020). sleep quality, timing, and psychological difficulties in italian schoolage children and their mothers during covid-19 lockdown. https://doi.org/10.31234/osf.io /95ujm cooke, a., smith, d., & booth, a. (2012). beyond pico. qualitative health research, 22(10), 14351443. https://doi.org/10.1177/104973231 2452938 corburn, j., vlahov, d., mberu, b., riley, l., caiaffa, w. t., rashid, s. f., ko, a., patel, s., jukur, s., martínez-herrera, e., jayasinghe, s., agarwal, s., nguendoyongsi, b., weru, j., ouma, s., edmundo, k., oni, t., & ayad, h. (2020). slum health: arresting covid-19 and improving well-being in urban informal settlements. journal of urban health, 97(3), 348-357. https://doi.org/10.1007/s11524020-00438-6 cátiabranquinho, colette kelly, lourdes c. arevalo, anabela santos, & margarida gaspar de matos. (2020). author response for "“hey, we also have something to say”: a qualitative study of portuguese adolescents’ and young people's experiences under covid‐ 19". https://doi.org/10.1002/jcop.22453/v 2/response1 egan, s. m., pope, j., moloney, m., hoyne, c., & beatty, c. (2021). missing early education and care during the pandemic: the socioemotional impact of the covid-19 crisis on young children. early childhood education journal, 49(5), 925934. https://doi.org/10.1007/s10643-02101193-2 fitzpatrick, o., carson, a., & weisz, j. r. (2020). undefined. child psychiatry & human development, 52(6), 10821093. https://doi.org/10.1007/s10578020-01089-z grimm, l. (2021). covid-19: china and health organizations comment on novel coronavirus: january 21, january 23, january 30, and january 31, 2020. historic documents of 2020, 4557. https://doi.org/10.4135/97810718390 34.n5 idoiaga mondragon, n., berasategi sancho, n., dosil santamaria, m., &eigurenmunitis, a. (2020). struggling to breathe: a qualitative study of children’s wellbeing during lockdown in spain. psychology & health, 36(2), 179194. https://doi.org/10.1080/08870446.20 20.1804570 king, d. l., delfabbro, p. h., griffiths, m. d., & gradisar, m. (2012). cognitive-behavioral approaches to outpatient treatment of internet addiction in children and adolescents. journal of clinical psychology, 68(11), 11851195. https://doi.org/10.1002/jclp.21918 kumar, d. (2020). corona virus: a review of covid-19. eurasian journal of medicine and oncology. https://doi.org/10.14744/ejmo.2 020.51418 moura, a. a., bassoli, i. r., silveira, b. v., diehl, a., santos, m. a., santos, r. a., wagstaff, c., & pillon, s. c. (2022). is social isolation during the covid-19 pandemic a risk https://doi.org/10.1016/s2214-109x(20)30116-9 https://doi.org/10.1016/s2214-109x(20)30116-9 https://doi.org/10.1016/s2468-2667(20)30082-7 https://doi.org/10.1016/s2468-2667(20)30082-7 https://doi.org/10.22555/joeed.v7i1.3260 https://doi.org/10.22555/joeed.v7i1.3260 https://doi.org/10.1016/s0140-6736(20)30460-8 https://doi.org/10.1016/s0140-6736(20)30460-8 https://doi.org/10.3390/nu12082352 https://doi.org/10.3390/nu12082352 https://doi.org/10.31234/osf.io/95ujm https://doi.org/10.31234/osf.io/95ujm https://doi.org/10.1177/1049732312452938 https://doi.org/10.1177/1049732312452938 https://doi.org/10.1007/s11524-020-00438-6 https://doi.org/10.1007/s11524-020-00438-6 https://doi.org/10.1002/jcop.22453/v2/response1 https://doi.org/10.1002/jcop.22453/v2/response1 https://doi.org/10.1007/s10643-021-01193-2 https://doi.org/10.1007/s10643-021-01193-2 https://doi.org/10.1007/s10578-020-01089-z https://doi.org/10.1007/s10578-020-01089-z https://doi.org/10.4135/9781071839034.n5 https://doi.org/10.4135/9781071839034.n5 https://doi.org/10.1080/08870446.2020.1804570 https://doi.org/10.1080/08870446.2020.1804570 https://doi.org/10.1002/jclp.21918 https://doi.org/10.14744/ejmo.2020.51418 https://doi.org/10.14744/ejmo.2020.51418 359 ihtp, 2(3), 352-370, 2022 cc by-nc-nd 4.0 issn 2563-9269 factor for depression? revista brasileira de enfermagem, 75(suppl 1). https://doi.org/10.1590/0034-71672021-0594 mcinnes, e., & wimpenny, p. (2008). using qualitative assessment and review instrument software to synthesise studies on older people's views and experiences of falls prevention. international journal of evidence-based healthcare, 6(3), 337344. https://doi.org/10.1111/j.17441609.2008.00104.x note from the editors: world health organization declares novel coronavirus (2019-ncov) sixth public health emergency of international concern. (2020). eurosurveillance, 25(5). https://doi.o rg/10.2807/15607917.es.2020.25.5.200131e ogurlu, u., garbe, a., logan, n., & cook, p. (2020). parents’ experiences with remote education during covid-19 school closures. american journal of qualitative research, 4(3). https://doi.org/10.29333/aj qr/8471 o’sullivan, k., clark, s., mcgrane, a., rock, n., burke, l., boyle, n., joksimovic, n., & marshall, k. (2021). a qualitative study of child and adolescent mental health during the covid-19 pandemic in ireland. international journal of environmental research and public health, 18(3), 1062. https://doi.org/10.3390/ijerph1803 1062 page, m. j., mckenzie, j., bossuyt, p., boutron, i., hoffmann, t., mulrow, c. d., shamseer, l., tetzlaff, j., & moher, d. (2020). updating guidance for reporting systematic reviews: development of the prisma 2020 statement. https://doi.org/10.31222/osf.io /jb4dx page, m. j., moher, d., bossuyt, p., boutron, i., hoffmann, t., mulrow, c. d., shamseer, l., tetzlaff, j., akl, e., brennan, s. e., chou, r., glanville, j., grimshaw, j., hróbjartsson, a., lalu, m. m., li, t., loder, e., mayo-wilson, e., mcdonald, s., … mckenzie, j. (2020). prisma 2020 explanation and elaboration: updated guidance and exemplars for reporting systematic reviews. https://doi.org/10.31222/osf.io/g wdhk panda, p. k., gupta, j., chowdhury, s. r., kumar, r., meena, a. k., madaan, p., sharawat, i. k., & gulati, s. (2020). psychological and behavioral impact of lockdown and quarantine measures for covid-19 pandemic on children, adolescents, and caregivers: a systematic review and meta-analysis. journal of tropical pediatrics, 67(1). https://doi.org/10.1093/tropej/fmaa122 pham, n. c., & shi, j. r. (2020). a qualitative study on mental distress of vietnamese students in the u.s.a. in the covid-19 era. asia pacific journal of health management, 15(3), 4557. https://doi.org/10.24083/apjhm.v15i3. 459 ramchandani, p. (2020). children and covid19. new scientist, 246(3277), 21. https://doi.org/10.1016/s02624079(20)30721-1 romeo, r. d. (2017). the impact of stress on the structure of the adolescent brain: implications for adolescent mental health. brain research, 1654, 185191. https://doi.org/10.1016/j.brainres.20 16.03.021 rundle, a. g., park, y., herbstman, j. b., kinsey, e. w., & wang, y. c. (2020). covid‐19–related school closings and risk of weight gain among children. obesity, 28(6), 10081009. https://doi.org/10.1002/oby.22813 scott, s., rivera, k., rushing, e., manczak, e., rozek, c. s., & doom, j. (2020). “i hate this”: a qualitative analysis of adolescents’ self-reported challenges during the covid-19 pandemic. https://doi.org/10.31234/osf.io /4ctb7 stockwell, s., trott, m., tully, m., shin, j., barnett, y., butler, l., mcdermott, d., schuch, f., & smith, l. (2021). changes in physical activity and sedentary behaviours from before to during the covid-19 pandemic lockdown: a systematic review. bmj open sport & exercise medicine, 7(1), e000960. https://doi.org/10.1136/bmjsem -2020-000960 thomas, j., & harden, a. (2008). methods for the thematic synthesis of qualitative research in https://doi.org/10.1590/0034-7167-2021-0594 https://doi.org/10.1590/0034-7167-2021-0594 https://doi.org/10.1111/j.1744-1609.2008.00104.x https://doi.org/10.1111/j.1744-1609.2008.00104.x https://doi.org/10.2807/1560-7917.es.2020.25.5.200131e https://doi.org/10.2807/1560-7917.es.2020.25.5.200131e https://doi.org/10.2807/1560-7917.es.2020.25.5.200131e https://doi.org/10.29333/ajqr/8471 https://doi.org/10.29333/ajqr/8471 https://doi.org/10.3390/ijerph18031062 https://doi.org/10.3390/ijerph18031062 https://doi.org/10.31222/osf.io/jb4dx https://doi.org/10.31222/osf.io/jb4dx https://doi.org/10.31222/osf.io/gwdhk https://doi.org/10.31222/osf.io/gwdhk https://doi.org/10.1093/tropej/fmaa122 https://doi.org/10.24083/apjhm.v15i3.459 https://doi.org/10.24083/apjhm.v15i3.459 https://doi.org/10.1016/s0262-4079(20)30721-1 https://doi.org/10.1016/s0262-4079(20)30721-1 https://doi.org/10.1016/j.brainres.2016.03.021 https://doi.org/10.1016/j.brainres.2016.03.021 https://doi.org/10.1002/oby.22813 https://doi.org/10.31234/osf.io/4ctb7 https://doi.org/10.31234/osf.io/4ctb7 https://doi.org/10.1136/bmjsem-2020-000960 https://doi.org/10.1136/bmjsem-2020-000960 360 ihtp, 2(3), 352-370, 2022 cc by-nc-nd 4.0 issn 2563-9269 systematic reviews. bmc medical research methodology, 8(1). https://doi.org/10.1186 /1471-2288-8-45 torales, j., o’higgins, m., castaldelli-maia, j. m., &ventriglio, a. (2020). the outbreak of covid-19 coronavirus and its impact on global mental health. international journal of social psychiatry, 66(4), 317320. https://doi.org/10.1177/0020764020 915212 valadez, m. d., lópez-aymes, g., ruvalcaba, n. a., flores, f., ortíz, g., rodríguez, c., & borges, á. (2020). emotions and reactions to the confinement by covid-19 of children and adolescents with high abilities and community samples: a mixed methods research study. frontiers in psychology, 11. https://doi.org/10.3389/fps yg.2020.585587 viner, r. m., russell, s. j., croker, h., packer, j., ward, j., stansfield, c., mytton, o., bonell, c., &booy, r. (2020). school closure and management practices during coronavirus outbreaks including covid19: a rapid systematic review. the lancet child & adolescent health, 4(5), 397404. https://doi.org/10.1016/s23524642(20)30095-x wang, g., zhang, y., zhao, j., zhang, j., & jiang, f. (2020). mitigate the effects of home confinement on children during the covid-19 outbreak. the lancet, 395(10228), 945947. https://doi.org/10.1016/s01406736(20)30547-x yamamoto, t., uchiumi, c., suzuki, n., sugaya, n., murillo-rodriguez, e., machado, s., imperatori, c., & budde, h. (2022). mental health and social isolation under repeated mild lockdowns in japan. scientific reports, 12(1). https://doi.org/10.1038/s41 598-022-12420-0 yoo, h. j., cho, s. c., ha, j., yune, s. k., kim, s. j., hwang, j., chung, a., sung, y. h., & lyoo, i. k. (2004). attention deficit hyperactivity symptoms and internet addiction. psychiatry and clinical neurosciences, 58(5), 487494. https://doi.org/10.1111/j.14401819.2004.01290.x https://doi.org/10.1186/1471-2288-8-45 https://doi.org/10.1186/1471-2288-8-45 https://doi.org/10.1177/0020764020915212 https://doi.org/10.1177/0020764020915212 https://doi.org/10.3389/fpsyg.2020.585587 https://doi.org/10.3389/fpsyg.2020.585587 https://doi.org/10.1016/s2352-4642(20)30095-x https://doi.org/10.1016/s2352-4642(20)30095-x https://doi.org/10.1016/s0140-6736(20)30547-x https://doi.org/10.1016/s0140-6736(20)30547-x https://doi.org/10.1038/s41598-022-12420-0 https://doi.org/10.1038/s41598-022-12420-0 https://doi.org/10.1111/j.1440-1819.2004.01290.x https://doi.org/10.1111/j.1440-1819.2004.01290.x 361 ihtp, 2(3), 352-370, 2022 cc by-nc-nd 4.0 issn 2563-9269 figure 1. prisma flow chart for the data screening process 362 ihtp, 2(3), 352-370, 2022 cc by-nc-nd 4.0 issn 2563-9269 table 1. summary studies included in review author and year context culture geographical location methods phenomena of interest objectives data analysis findings abdulah et al., 2020 emotional effects of children during home confinement due to an outbreak children who were home confined during the covid-19 pandemic in the kurdistan region of iraq. iraq art based qualitative study psychological impact and mental health of children at the peak of the covid-19 pandemic in kurdistan examine the emotional wellbeing of the children who were confined at home during the covid19 outbreak from their perspective qualitative content analysis 1. fear of infection in children 2. safety perceptions during home confinement 3. relationship of children with siblings and parents bhamani, et al., 2020 homeschooling during covid19 pandemic parents residing in urban areas of pakistan pakistan a descriptive qualitative design using openended questions via google doc forms personal experiences of parents managing learning at home during the times of covid-19. exploring experiences of parents regarding home learning and management during the times of covid 19 manual thematic analysis 1. impact of covid on children’s learning 2. the support given by the schools 3. strategies used by caregivers at home to support learning bove et al., 2021 experiences of families with children and adolescents during covid19 pandemic. families with a child under 18 years old. uruguay a mixedmethod study. life of families during the implementation of social distancing measures. to explore the experiences of families with children and adolescents during the coronavirus content analysis based on inductive coding by krippendorf 2004 1. staying at home 2. workrelated changes 3. social life 4. mood changes 363 ihtp, 2(3), 352-370, 2022 cc by-nc-nd 4.0 issn 2563-9269 (covid-19) pandemic in uruguay. 5. hygiene and cleaning 6. education 7. routines and habits 8. family life 9. economic aspects 10. preventive measures 11. lack of outdoor activities 12. positive changes 13. organization and planning 14. changes in the environment carroll et al., 2020 health behaviors of families during covid-19 pandemic canadian families canada mixed method study health behaviors, stress, financial, and food security among families during covid-19 pandemic to identify how health behaviors, level of stress, financial and food security have been impacted by the pandemic among canadian families with young children. thematic analysis by braun and clarke 1.physical activity and screen time changes 2. children’s mood and general behaviour. 3. factors that increase family stress 4.strategies to cope with changes 364 ihtp, 2(3), 352-370, 2022 cc by-nc-nd 4.0 issn 2563-9269 5.helpful resources cátiabranquinho et al., 2020 adolescents and young people’s experience in the covid-19 pandemic school and university students portugal qualitative study adolescents and young people's perception of the impacts of the pandemic upon them, as well as their competence to participate in the issues that directly affect them (1) to give adolescents and youth a voice and listen to the impact of coronavirus disease 2019 (covid‐19) in their lives; (2) to identify their coping strategies; (3) present lessons learned to be better prepared for future pandemics. content analysis using maxqda 2020 1. biological, psychological, social impact 2. coping strategies 3. lessons for future pandemics egan et al., 2021 early childhood education and care during the lockdown in the covid-19 pandemic parents of the home confined young children during the covid-19 pandemic ireland mixed method study socio-emotional impact on young children due to closure of early childhood education care settings during covid-19 pandemic draws upon data gathered online from parents during the initial period of lockdown in ireland, and provides insights into the socioemotional impact of the covid-19 crisis on thematic analysis by braun & clarke 1. ‘missing’ from a structural perspective (early childhood education and school, activities, structure, routine) 2. ‘missing’ from a relational perspective, as a lack of interaction was another key theme. 3. another key theme to emerge 365 ihtp, 2(3), 352-370, 2022 cc by-nc-nd 4.0 issn 2563-9269 young children. from the data related to the socio-emotional impact that the lockdown had on children and their parents, with both negative and positive effects noted by parents. fitzpatrick et al., 2020 child, adolescent, and caregiver mental issues during covid19 pandemic ethnically diverse caregivers of children and adolescents (1–19 years old) usa mixed method study mental issues of families of children and adolescents amidst covid19 pandemic informing which intervention programs, focusing on which problems, might be most appropriate and effective for families during this and future contagious disease outbreaks, as well as other crises that have similar impacts on family functioning thematic analysis by braun and clarke 1. caregiveridentified emotional, behavioural, and mental health top problems of children and adolescents (includes 17 themes) 2. caregiveridentified emotional and behavioural needs of children and adolescents (includes 14 themes) 3. caregiver mental health needs assessment (includes 13 themes) mondragon et al., 2021 home confined children during the lockdown in spain school children of basque country region spain a qualitative study coping strategies of children during a pandemic to gather the voices of children in lockdown during the the reinert method uses iramuteq software for lexical analysis. children reported having mixed emotions in lockdown; whilst they are happy 366 ihtp, 2(3), 352-370, 2022 cc by-nc-nd 4.0 issn 2563-9269 located in northern spain. covid-19 pandemic in spain to examine how they are coping with this health crisis. this method has frequently been used to study the content of open questions. and relaxed with their families, they also feel fear, nervousness, worry, loneliness, sadness, boredom, and anger. at a physical level, children noted it was difficult to be deprived of fresh air for weeks, which also makes them primarily sedentary, and they missed outdoor exercise. socially, they missed peers and caregivers. pham & shi, 2020 international students who are away from their home country during the covid-19 pandemic. vietnamese students living in new york usa in-depth interviews via zoom platform. the root causes of mental distress among vietnamese students in new york city. to examine how the covid-19 pandemic affects the mental distress of the vietnamese students in the usa., to explore different root causes of mental distress narrative textual analysis. 1. unsafe living conditions 2. interruptions of school. 3. interruptions of work 4. got sick and had limited access to healthcare services 5. cannot go back to my home country. 6. isolation at home, unable to access public facilities. 367 ihtp, 2(3), 352-370, 2022 cc by-nc-nd 4.0 issn 2563-9269 among international students who are away from their home country, their loved ones, and being isolated from school and community due to this outbreak. 7. unstable future on the carrier after graduation 8. racism 9. cultural factors scott et al., 2020 life of adolescents during school closure due to covid-19 pandemic multi-racial school children of urban high schools usa qualitative study challenges faced by adolescents during school closure and home confinement. to determine what adolescents reported as their biggest challenges faced during the covid19 school closures and socialdistancing policies content analysis 1. academics and work habits 2. mental health 3. physical health 4. friends 5. family 6. routine 7. social connection and community 8. covid-19 rules and adjustments 9. future 10. socio-economic 11. important events 12. exposure to covid-19 13. technology 14. miscellaneous valadez et al., 2020 emotions and reactions do children and adolescents show from the children aged between 5 and 14years old belonging mexico, spain, usa mixed method study to study the emotional reactions of children, with high ability using know and compare the emotions and reactions to confinement due to the alceste software. analyselexicale par contexte d’un ensemble de segments de female students show more concern, but also more sympathy and personal satisfaction. 368 ihtp, 2(3), 352-370, 2022 cc by-nc-nd 4.0 issn 2563-9269 confinement of covid-19 to the community and high ability lives in mexico, spain, and the usa community samples, to understand their emotions and reactions to the confinement that has been required since the health alert for covid-19 covid-19 pandemic in children and adolescents with high abilities and community samples texte (alceste) has been developed to respond to the needs and problems of social researchers when using instruments with open questions, indepth interviews, or answers (texts) based on projective techniques adolescents are less worried than children need to socialize with their peers. 369 ihtp, 2(3), 352-370, 2022 cc by-nc-nd 4.0 issn 2563-9269 table 2. summary themes identified initial codes descriptive themes finalized major themes 001 fear of getting infected, peer groups, play time, group study, boredom, work stress from online classes, worrying about future, anxiety, sadness, loneliness, guilty of being asians 1. major life transition 2. understanding the situation 3. recreational activities at home 4. spending time with siblings and parents 5. symptoms of mental illnesses 6. negative emotional responses 7. interpersonal problems 8. psychological distress 9. impact of daily life and routines 10. impact on healthand well‐ being 11. positive impact on health 12. breaking routines and relax routines 13. more time to spend with the family 14. sense of insecurity 15. screen time issues 1. negative and maladaptive behaviour 2. social and psychological disruption 3. emotion regulation 4. value of family time 002 socialization, disciplines, socio-emotional skills, negative effect on confidence, recreational activities at home, disrupted sleep wake cycle, emotional support from school 003 fear of the virus, fear of hospitalization, fear of going to school, depressed, loss of peer groups, plat time, more time with parents, social skills, stressed, loneliness 004 social development, boredom, loneliness, loss of peer groups, worrying, subdued, spaced out, emotionally demanding, tantrums, sleep disturbances, isolation anxiety, behavioral issues, mood changes, play time with siblings, clinginess 005 misbehaviors, anxiety, stress, social isolation, depression, tantrums, attention deficit, hyperactivity impulsivity, fear of future, worries about failing schools, socialization, loneliness, insomnia, troubled sleeping, anger, being irritable, boredom, no enough mental stimulation, lazy, frustrated, disciplines, distress 006 isolation, fear of infection, play time, rest time, interactions with siblings, peer groups, boredom, anxious, happy to be with family, hope, sadness, fear of going to school, excited, fun 007 stress, inability connect with technology, low mood, socially withdrawn, social isolation, tearful, peer groups, upset, loneliness, hatred, behavioral changes, frustration, clinginess, decreased attachment security, maladaptive behavior, daily routine, stress over home schooling, depression, disappointment, lack o freedom, family issues, sleep disturbances 008 depressed, anxious, relaxation, less tired, loneliness, dependence, substance abuse, sleep pattern, social life, time with family, boredom, daily routine, domestic violence 009 irritability, frustration, boredom, restless, missing school, anxiety, happy, sleep time, enjoying time with family, social development, slower morning routine, stress, fear of getting infection, depression, intimate relationships 010 boredom, feeling lonely, anxious, selfconsciousness, anger, worrying, missing people, uncertainty about future 370 ihtp, 2(3), 352-370, 2022 cc by-nc-nd 4.0 issn 2563-9269 011 missing close people, wants to cry, boredom, loneliness, sadness, angry, upset, happy, cheerful, very fun, scared, fear of infection, nervous, little scary, recreational activities at home, calm, relaxed, siblings, prison 012 rest, relax, happy, sad, sacrifice, annoyed, frustrated, low mood, missing school, missing special festivals, freedom, lonely, normality, stress, guilt, confusion, emotional, little energy, fear of infection, family bonds, uncertainty, crying, fear of infection, worsening present mental problems 013 worried, fear of infection, missing friends, relatives, stressed, can’t smile, confused of information, boredom, obsession about cleaning, restless, family bond, arguments, fights, happiness ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 27 agir pour la santé de la planète en intégrant une démarche écoresponsable dans les cabinets : une expérimentation française en cabinet dentaire/ acting for planetary health by integrating an ecoresponsible approach in practices : a french experiment in dental practice special issue: planetary health alice baras1 1ecops conseil, lille, france corresponding author: a. baras (alice.baras@ecops-conseil.fr) resume introduction : les activités humaines modernes entraînent des changements fondamentaux dans la biosphère et perturbent de nombreux systèmes naturels de la planète. le dérèglement climatique, la pollution de tous les milieux air, eau, sols -, le taux d’effondrement de la biodiversité ou encore les changements majeurs dans l'utilisation des terres menacent les conditions de santé et de bien-être humain et du vivant. face à cette urgence écologique et sanitaire, les professionnels de santé ont un rôle prépondérant à jouer pour être promoteur de la santé planétaire. intégrer une démarche écoresponsable au cœur de leurs pratiques est l’opportunité d’être acteur et ambassadeur de la transformation écologique aujourd’hui nécessaire. celle-ci doit être réalisée tout en continuant à assurer la qualité et la sécurité des soins. pour cela, il semble indispensable de créer et développer un outil intégré de qualité sécurité environnement qui réponde aux recommandations professionnelles et n’entrave en aucune manière la réalisation des soins et l’accueil des patients. c’est l’objectif de l’expérimentation pionnière qui a été menée auprès de praticiens français. méthodes : menée au sein de 8 cabinets dentaires volontaires en france de septembre 2019 à juillet 2020, l’action vise à accompagner les praticiens, et leur équipe éventuelle, à l’aide de plusieurs outils et ressources à intégrer une démarche écoresponsable en cabinet dentaire selon une approche systémique. résultats : le projet « prévention environnement patients soignants » a permis d’éprouver l’intégration d’un programme d’accompagnement à l’intégration de l’écoresponsabilité en santé avec pour moteur le bénéfice sanitaire, social, environnemental et économique d'une évolution des pratiques et d’observer les freins et leviers à son développement à plus grande échelle. conclusion : mener ce projet a permis aux praticiens accompagnés d’avancer dans la démarche de santé globale aujourd’hui nécessaire. il appelle à un développement et à un soutien élargi de l’ensemble des parties prenantes du secteur médical. des études pour évaluer quantitativement les avantages écologiques, sociaux, sanitaires et économiques d’une telle démarche sont nécessaires. abstract introduction: modern human activities are causing fundamental changes in the biosphere and disrupting many of the world's natural systems. climate disruption, pollution of all environments air, water, soil -, the rate of collapse of biodiversity or major changes in land use threaten the conditions of human and living health and well-being. faced ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 28 with this ecological and health emergency, health professionals have a major role to play in promoting global health. integrating an eco-responsible approach into the heart of their practices is an opportunity to be an actor and ambassador of the ecological transformation that is needed today. this transformation must be achieved while continuing to ensure the quality and safety of care. to do this, it seems essential to create and develop an integrated quality-safety-environment tool that meets professional recommendations and in no way hinders the delivery of care and the reception of patients. this is the objective of the pioneering experiment conducted with french practitioners. methods: conducted in 8 voluntary dental practices in france from september 2019 to july 2020, the action aims to support practitioners, and their eventual team, with the help of several tools and resources to integrate an eco-responsible approach in dental practice through a systemic approach. results: the « prevention environment patients caregivers » project made it possible to test the integration of a support program for the integration of eco-responsibility in health care, with the health, social, environmental, and economic benefits of an evolution in practices and to observe the obstacles and levers for its development on a larger scale. conclusion: carrying out this project has enabled the practitioners accompanied to move forward in the global health approach that is necessary today. it calls for further development and support from stakeholders in the medical sector. studies to quantitatively evaluate the ecological, economic, social and health benefits of such an approach are needed. keywords cabinet dentaire; co-bénéfices; ecoresponsabilité; expérimentation; santé planétaire funding source le projet a été soutenu financièrement par l’union régionale des chirurgiens-dentistes libéraux de bretagne (urps cdlb) au sein de la région de bretagne en france et réalisé par un chirurgien-dentiste spécialisé dans la formation et l’accompagnement à l’intégration de la démarche écoresponsable en cabinet de santé et la promotion de la santé durable. introduction les activités humaines modernes entraînent des changements fondamentaux dans la biosphère et perturbent de nombreux systèmes naturels de la planète. le dérèglement climatique, la pollution de tous les milieux air, eau, sols -, le taux d’effondrement de la biodiversité ou encore les changements majeurs dans l'utilisation des terres menacent les conditions de santé et de bien-être humain et du vivant (whitmee et al., 2015). la première publication du rapport meadows « les limites de la croissance » (meadows et al., 1972) puis le « rapport brundtland » (bruntland, 1987) ont sonné le tocsin depuis plusieurs décennies. ces changements environnementaux sont globaux et brutaux. la grande accélération qui signe l’ère de l’anthropocène a débuté relativement récemment, rapportée à l’échelle de développement de l’humanité, avec l’avènement de l’ère industrielle et du consumérisme. cette rapidité et l’ampleur des bouleversements environnementaux engendrés ont des conséquences directes et indirectes sur la santé humaine. elles entrainent l’augmentation significative de la prévalence des maladies non transmissibles et participent à l’émergence de nouvelles maladies infectieuses, elles induisent des difficultés d’accès à l’eau potable et les problèmes de malnutrition, des migrations et des conflits socioéconomiques, ainsi que des effets négatifs sur la santé mentale. face à cette urgence écologique et sanitaire, les modes de vie et de consommation extractivistes et linéaires doivent évoluer, et ce rapidement, vers un modèle de sobriété respectueux des limites ou frontières planétaires et des biocapacités de la terre à produire des ressources et à absorber les pollutions rejetées par les activités humaines (folke et al., 2021). la préservation des écosystèmes est une urgence sanitaire et sociale. aujourd’hui les professionnels et acteurs de santé se retrouvent face à un double enjeu. d’une part, ils doivent apporter une réponse adaptée aux impacts direct et indirect des changements environnementaux globaux sur la santé. d’autre part, ils doivent eux-mêmes participer aux mesures ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 29 d’atténuation des bouleversements écosystémiques en évaluant leur propre impact écologique et en intégrant des pratiques durables au cœur de leurs activités professionnelles. en effet, les activités de santé représentent elle-même une part non négligeable dans les impacts environnementaux. les soins de santé contribuent significativement à l'épuisement des ressources naturelles et aux différentes pollutions. en considérant le seul poste des émissions de gaz à effet de serre (ges), responsables du dérèglement climatique, selon le récent rapport produit par le réseau européen health care without harm (hcwh, 2019), le secteur de la santé a émis à lui seul 2 gt de co2eq en 2014 et serait donc responsable de 4,4 % des émissions nettes mondiales annuelles. s’il était un pays, ce secteur économique serait le cinquième émetteur de ges de la planète. son empreinte reflète généralement le comportement national des émissions. ainsi, l’union européenne, en tant que bloc, est le troisième contributeur aux émissions mondiales de ges des soins de santé, après les états-unis et la chine. l’empreinte carbone du système de soins américain est estimé à près de 10 %. pour la france, il est de l’ordre de 7 à 8 %. pour l’australie, son empreinte représente 7 % des émissions mondiales du pays. pour la grande bretagne, le national health service (nhs) les a estimées à 4 %, tandis qu’au canada, sa part est de 4,6 % (the shift project, 2021 ; malik et al., 2018 ; nhs, 2020 ; eckelman et al., 2018). à ces émissions de ges, s’ajoute l’empreinte écologique globale représentée par la consommation des ressources et les rejets de polluants via l’usage des dispositifs médicaux et médicaments et des biens non spécifiques aux activités de santé, le développement de l’usage unique et la surconsommation d’équipements de protection individuelle par exemple. ce double enjeu nécessite une réponse adaptée et holistique. l’atténuation et l’adaptation sont les leviers de la résilience du système de santé qu’il soit considéré à l’échelle locale ou globale. cette double stratégie est une opportunité d’innover autrement pour un système de santé qui tend à être de plus en plus technologisé et hypermondialisé et qui montre aujourd’hui ses limites, notamment dans la récurrence des ruptures des chaines d’approvisionnement de certains médicaments et dispositifs médicaux pour les pays qui ne maîtrisent pas cette chaîne. le chirurgien-dentiste, en tant que professionnel de santé, mais aussi, de par la spécificité de son activité, génératrice de déchets potentiellement toxiques et dépendante de l’usage courant de produits chimiques nécessaires aux activités de soin et d’entretien et désinfection, se doit d’être exemplaire en s’efforçant de limiter l’impact environnemental de son cabinet et en soutenant la promotion de la santé planétaire (horton, 2015). relever le défi de l’atténuation et de l’adaptation pour pérenniser l’offre de soins bucco-dentaires s’appuie sur la démarche de réduction d’impact environnemental ou démarche écoresponsable. celle-ci doit être réalisée tout en continuant à assurer la qualité et la sécurité des soins. pour cela, il semble indispensable de créer et développer un outil intégré de qualité sécurité environnement qui réponde aux recommandations professionnelles et n’entrave en aucune manière la réalisation des soins et l’accueil des patients. les soins ne s’envisagent pas sans l’intégration de leur durabilité. il s’agit également d’arbitrer les différentes mesures ou actions de maîtrise d’impact en ayant accès à des données sourcées. celles-ci permettent d’éviter les fausses bonnes idées ou effets rebonds. c’est l’objectif de l’expérimentation pionnière qui a été menée au sein de 8 cabinets dentaires volontaires en france de septembre 2019 à juillet 2020. celle-ci vise à accompagner les praticiens, et les membres de leur équipe, si tel est le cas, à intégrer une démarche écoresponsable en cabinet dentaire par une approche systémique. objectif le projet « prévention environnement patients soignants » peps souhaite participer au développement de la sensibilisation des praticiens aux enjeux actuels et à y répondre en les accompagnant dans la mise en œuvre d’une démarche personnalisée de maîtrise de leur impact environnemental en cabinet dentaire et de promotion de la santé environnementale en s’appuyant sur le bénéfice sanitaire, social, environnemental et économique généré par une ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 30 évolution des pratiques. cette approche globale de la dynamique en co-bénéfices est positive et fait écho à la mission initiale des professionnels de santé. les actions en faveur de l’environnement et des écosystèmes susceptibles d’être intégrées à la gestion d’un cabinet dentaire ou de tout cabinet médical sont fréquemment dans le même temps des actions préventrices de la santé de l’équipe soignante, de celle des patients et promotrices de santé publique. ces mesures peuvent concerner la démarche de sobriété chimique, de l’écoprescription, de la rénovation et de l’isolation des bâtiments ou encore des mobilités douces. le projet peps a également pour objectif de mettre à l’épreuve sur le terrain des outils et procédures intégrées construits sur des données probantes sans risque d’effet rebond pour l’environnement ou la qualité et la sécurité des soins et d’observer les freins et leviers à son déploiement à une plus grande échelle. methodes l'étude a été menée au sein de 8 cabinets dentaires volontaires en france de septembre 2019 à juillet 2020. l’accompagnement des praticiens engagés et de leur équipe le cas échéant, s’est appuyé sur la mise à disposition de plusieurs outils créés par le réalisateur de projet et des ressources adaptées au contexte de chaque structure. les étapes du programme (figure 1) 1. recrutement : le programme a débuté avec le recrutement de 8 « praticiens et cabinet pilotes » (pcp) grâce à une enquête menée et diffusée par l’urps cdlb au 2ème trimestre 2019 auprès des chirurgiens-dentistes de la région bretagne. l’objectif de l’enquête était d’évaluer le degré de sensibilisation et d’information qu’avaient les praticiens quant à la santé environnementale et à l’écoresponsabilité, et leur besoin d’information et/ou d’accompagnement pour faire évoluer leurs pratiques. le questionnaire était construit autour de 15 questions et une seizième qui permettait de collecter les coordonnées des praticiens intéressés par le projet peps. 2. présentation : un premier temps-fort de sensibilisation et de formation aux enjeux actuels de santé et d’écologie, aux notions d’empreinte écologique humaine et médicale et à la promotion de la santé environnementale et de la santé durable et à leurs déterminants, a eu lieu en septembre 2019. cette séance a permis également de présenter les outils créés pour accompagner les équipes et d’engager les échanges entre les praticiens volontaires. 3. evaluation initiale : chacun des pcp a ensuite bénéficié d’une évaluation personnalisée de ses pratiques en termes d’impact écologique et d’environnement professionnel en intégrant les enjeux de la qualité et de la santé au travail. pour piloter leurs actions et les inscrire dans une démarche d’amélioration continue, une auto-évaluation accompagnée a été proposée. celle-ci s’appuie sur une grille de 60 critères environnementaux, 10 questions pour chacune des 6 thématique suivantes et la possibilité d’y répondre par oui ou non : maîtrise des consommations d’énergie et des ressources et des émissions de ges directes, démarche d’achat écoresponsable, maîtrise de la qualité de l’air intérieur, gestion de l’eau, gestion des déchets et enfin, management responsable et communication auprès de l’équipe et de l’ensemble des parties prenantes de la démarche de santé durable. ces thématiques ou pistes d’action ont été définies suite à l’observation des différents postes à impact et des flux de matière entrants et sortants de la structure (figure 2). elles permettent d’appréhender de manière globale et systémique la maîtrise de l’impact écologique du cabinet dentaire en allant au-delà des seuls impacts ou pollutions directs ou visibles. elles ont été reprises au sein du référentiel créé sur mesure (figure 3). pour chaque poste à impact la proposition n’est pas le solutionnisme court-termisme ou recours à plus de technologie. la proposition est en premier lieu une réflexion globale de durabilité forte et de sobriété (fichier supplémentaire). 4. définition des objectifs : l’auto-évaluation accompagnée a permis aux pcp de valoriser les éventuels écogestes déjà mis en place et de se fixer des objectifs adaptés au contexte de leur activité professionnelle et relatifs aux thématiques auxquelles ils étaient les plus sensibles. chaque clinique ou lieu d’exercice de la santé bucco-dentaire présente des spécificités. il appartient à chaque ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 31 praticien et aux membres de son équipe, de s’approprier les pistes de réflexion et de propositions d’action selon leur contexte et leurs contraintes tels que le fait d’exercer en solo ou en groupe, en omnipratique ou en exercice spécialisé, en milieu rural ou urbain, au sein d’un bâti ancien ou plus récent par exemple. 5. intégration : l’accompagnement s’est déroulé sur 6 mois avec des échanges réguliers entre le réalisateur du projet et les pcp, le partage de conseils adaptés ou encore la création de procédures intégrées. 6. evaluation finale : a l’issue de cette période, l’auto-évaluation est réalisée grâce aux 60 critères prédéfinis. un temps d’échange et un compte rendu rétrospectif de la démarche et la comparaison des résultats obtenus entre l’entrée et la sortie du programme ont permis d’apprécier la progression réalisée et pour les pcp de se fixer des nouveaux objectifs afin de poursuivre et ajuster leur démarche au-delà du temps du projet. l’objectif global n’était pas un utopiste « cabinet zéro impact » mais une maîtrise de l’empreinte écologique progressive qui s‘inscrit dans la durée. 7. bilan : le programme a été suivi d’une évaluation du projet auprès des pcp et des membres de l’urps afin de réaliser un bilan global de celui-ci et de sa pertinence et des freins et leviers pour déployer le programme à une plus grande échelle. une démarche selon le principe de l’amélioration continue la démarche écoresponsable est basée sur un engagement volontaire et un principe directeur d’amélioration continue de la performance environnementale par la maîtrise des différents impacts générés par l’activité du cabinet médical. l’objectif à atteindre est d’inscrire l’engagement écoresponsable du praticien et de son équipe dans une dynamique positive et dans la durée. il s’agit notamment d’éviter la mise en place d’écogestes isolés non coordonnés alors peu pérennes voire contre-productifs. dans un quotidien déjà très occupé à prendre soin des patients et à répondre aux contraintes réglementaires et aux charges de gestion et d’organisation, l’intégration de la démarche doit être facilitée et planifiée. le système d’amélioration continue est classiquement représenté par la roue de deming, ou démarche pdca (plan/planifier do/développer check/contrôler act/ajuster). (figure 1) chacune des étapes est un préalable à la suivante et entretient une dynamique vertueuse. la définition d’objectifs clairs est un préalable indispensable à une action concrète et efficace. afin de formuler ces objectifs et les indicateurs de leur atteinte, les équipes pourront s’aider de la méthode smart. selon cette méthode, ces objectifs doivent être spécifiques/simples c’est-à-dire précis et compréhensibles par chaque acteur, mesurables, atteignables, réalistes soit adapté au contexte et aux moyens à disposition et temporels c’est-à-dire définis dans le temps. un exemple d’objectif smart : baisser les consommations électriques de 10 % en 6 mois. se fixer des objectifs trop ambitieux ou trop nombreux est potentiellement contreproductif. le risque de ne pas les atteindre tous peut être démotivant et mettre à mal tous les efforts et bonnes intentions formalisés au départ. il est recommandé de se fixer 2 ou 3 objectifs bien cadrés, en contrôlant leur ordre de grandeur environnemental pour qu’ils présentent un réel intérêt, et en fixer rapidement de nouveaux, une fois que ceux-ci sont atteints. les outils de l’accompagnement les entretiens et auto-évaluations chaque étape a débuté par un temps d’échange avec le pcp. tous les membres de l’équipe sont invités à y participer. selon les équipes, le questionnaire a été rempli par le seul praticien titulaire, pour d’autres, certains membres ont participé et pour une équipe tous les membres étaient présents. les données et informations sont collectées et interprétées afin d’accompagner les pcp dans leur démarche. le questionnaire d’auto-évaluation articulé autour de 60 critères qualité santé environnement et organisationnels, 10 questions par thématique proposée, est complété par les pcp de manière accompagnée. le format de réponse proposé est ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 32 simple. deux réponses sont possibles oui/non. le pcp obtient ainsi un score global sur 60 points et un score pour chaque thématique sur 10 points. une section « commentaires » est proposée afin de préciser la motivation à répondre oui ou non et les questionnements en rapport avec la thématique et le critère avancé. cela a permis de transmettre des informations complémentaires et d’approfondir certaines notions encore mal connues par les professionnels de santé. une fois le score obtenu, les pcp ont pu évaluer leur état d’avancement selon les différentes thématiques abordées et commencer à cerner les bornes de leur feuille de route. une visite du cabinet dentaire est réalisée au cours de la même séance. elle est particulièrement pertinente car elle permet de confirmer, compléter ou infirmer les réponses avancées par les pcp. afin d’assurer la confidentialité des réponses aux différents questionnaires, des comptes rendus réalisés, des propos recueillis et des pratiques observées au sein des différents cabinets, une convention tripartite a été signée entre le réalisateur du projet, le pcp et le porteur de projet, l’urps cdlb. celle-ci précisait notamment le cadre confidentiel des données et le respect du secret médical si besoin. aucune information ou témoignage n’a circulé sans avoir recueilli l’accord préalable du ou des pcp impliqués. de plus les résultats des auto-évaluations individuelles ont été communiqués uniquement au sein de l’équipe concernée. seuls les résultats de l’observation de la progression globale des équipes entre les deux temps d’auto-évaluation ont été communiqués au-delà des seuls membres de chaque équipe ou pcp. (figure 4) des outils sur mesure et des procédures adaptées selon les objectifs fixés et les thématiques privilégiées, des affichages, communications ou procédures sont créés et proposés. les procédures classiquement présentes en cabinet telles que la gestion des déchets et leur élimination ou le traitement des dispositifs médicaux sont augmentées d’un volet environnemental. un guide pratique le guide propose trois chapitres. le premier rappelle les prérequis qui sont le fait de respecter impérativement les recommandations professionnelles et d’assurer qualité et sécurité des soins. il présente le principe de la démarche d’amélioration continue et un référentiel ou tableau de bord permettant d’établir la feuille de route et d’observer la progression de l’intégration de la démarche environnementale. le tableau de bord, outil de pilotage de la démarche, permet à chacun de ses acteurs de visualiser ses avancées et de répertorier les actions en lien avec les différents postes à impact. sa mise à jour est incontournable pour pérenniser la démarche et gagner en efficacité. pour chaque objectif fixé selon le schéma smart, des indicateurs qualitatifs ou quantitatifs sont définis. selon le principe de la démarche d’amélioration continue, après une période déterminée et validée par tous à l’avance, il s’agit d’observer si ces objectifs sont atteints, si oui, en fixer d’autres, sinon, évaluer les freins ou les raisons de cet échec et y remédier. le tableau de bord est composé de 6 fiches réparties selon les thématiques prédéfinies : maîtrise des consommations d’énergie et des ressources et des émissions de ges directes, démarche d’achat écoresponsable, maîtrise de la qualité de l’air intérieur, gestion de l’eau, gestion des déchets et management et communication de la démarche de santé durable auprès de l’équipe et de l’ensemble des parties prenantes. les fiches présentent un rappel des principales données théoriques et enjeux, des risques et opportunités liées à la thématique et un tableau offrant la possibilité de répertorier les objectifs fixés, les indicateurs de l’atteinte de ces objectifs et une colonne permettant de préciser l’échéance définie et l’état d’avancement pour cette action. (figure 3) resultats après plus de 6 mois de mise en œuvre et grâce à l’engagement de chaque praticien et éventuellement des membres de son équipe, l’audit final a permis d’établir un bilan positif. les équipes ont suivi l’ensemble du programme. l’ensemble des pcp a progressé dans la démarche et pour la plupart sur chacun des 6 thèmes proposés. (figure 4) cependant ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 33 la marge de progression n’a pas été uniforme entre eux. une partie du programme s’est déroulée au commencement de la crise de covid-19. en france, les cabinets dentaires ont été fermés pendant plusieurs semaines. cet événement a été ressenti différemment parmi les pcp. pour certains, il a été un frein, entrainant une baisse de la dynamique engagée. pour d’autres, il a été vécu de manière positive, car il a permis de réaliser certaines actions plus chronophages, telles que la collecte et la consultation des fiches de données de sécurité ou la création de procédures intégrées. a l’occasion de l’entretien final de l’accompagnement et la revue thématique par thématique, il a été proposé aux pcp de se fixer de nouveaux objectifs. tous ont relevé le défi. le bilan global de ce projet est positif à plusieurs titres. tout d’abord, par le fait même de sa création et de sa mise en œuvre, celui-ci étant pionnier sur le sujet en france qu’il s’agisse des cabinets dentaires ou des cabinets médicaux ou paramédicaux de ville. il envoie un message positif et présente l’avantage d’éclairer les attentes actuelles des praticiens en matière d’écoresponsabilité et de santé planétaire et d’interpeler l’ensemble des parties prenantes de la médecine bucco-dentaire. il permet également de proposer de nouvelles stratégies et de débuter un travail complexe mais néanmoins nécessaire face aux enjeux sanitaires et environnementaux actuels. ce projet a été mené à terme. chaque étape préétablie a été validée, et ceci malgré le contexte sanitaire particulier lié à l’épidémie de covid-19 qui a nécessité une adapttaion des dernières étapes. discussion les limites les objectifs et actions ont été choisies par les pcp eux-mêmes. aucun n’a fait le choix de faire une évaluation quantitative de la maîtrise d’impact environnemental générée par la démarche, tel que le volume de déchets évité en kilos, de kilomètres en véhicule carboné non parcourus ou de litres d’eau économisés. plus de données quantitatives auraient été intéressantes pour évaluer finement la maîtrise de ces critères ou les économies financières réalisées. lors du premier temps fort, seuls les pcp étaient présents. les collaborateurs ou assistants dentaires n’étaient pas conviés d’emblée à y participer. il s’avère que cela a été un frein important pour plusieurs cliniques. certains membres moins sensibilisés par ailleurs aux enjeux écologiques actuels ont de prime abord accueillis l’intégration de cette démarche uniquement comme une contrainte supplémentaire. en rencontrant les équipes sur site, l’aspect santé au travail a été valorisé et a permis pour la plupart de les intégrer à la dynamique. cependant le déficit de sensibilisation et d’information sur le sujet et ses enjeux est resté un frein pour certaines équipes. les leviers pour accélérer le développement de la démarche l’approche positive en co-bénéfices intégrer une démarche écoresponsable par l’écoconception des soins, c’est maîtriser les impacts environnementaux générés directement ou indirectement par l’activité de médecine buccodentaire à chaque étape du cycle de vie des soins délivrés, des biens et services en lien. cette démarche est également une des voies d’entrée à la démarche de santé durable. en effet, elle s’articule de manière implicite et vient soutenir les deux autres piliers du développement durable ou soutenable que sont le pilier économique et le pilier socio-sanitaire. (figure 5) ainsi, dans le cadre de la médecine bucco-dentaire, cette démarche permettra de considérer toutes les opportunités disponibles pour réduire l’impact environnemental du cabinet tout en favorisant le développement de la qualité de vie au travail de l’équipe, de l’équité sociale et la sécurité sanitaire et de l’efficacité économique. elle est un formidable vecteur de prévention et de promotion de santé environnementale. la proposition s’inscrit dans les objectifs de la santé planétaire, prendre soin équitablement dans le respect des limites planétaires afin de participer au maintien des conditions de santé et de bien-être du vivant. pour être pérenne, cette démarche doit être intégrée de manière transversale à la gestion du cabinet. son suivi et le temps nécessaire pour la mener doivent être inscrits à l’agenda de la structure. ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 34 prévention et promotion de la santé la prévention et la promotion de la santé font partie intégrante de la démarche écoresponsable. en maîtrisant le développement de nouvelles pathologies, la demande de soins va diminuer ce qui aura pour conséquences de limiter les impacts écologiques initiaux et de pouvoir concentrer les moyens humains et financiers à soigner de manière optimale ceux qui en ont le plus besoin et continuer de développer les conditions de santé et de bien-être auxquelles chaque individu aspire et devrait avoir accès. formation initiale et continue afin d’intégrer la démarche d’écoconception des soins et de durabilité en santé, les thématiques de santé-environnement, santé durable et de santé planétaire doivent être intégrées de manière transversale à l’offre de formation initiale et continue pour les chirurgiens-dentistes, assistantes dentaires ou hygiénistes, pour les médecins et l’ensemble des professionnels et acteurs de santé. une récente enquête, dont l’objet était de recueillir l’opinion des professionnels de santé sur le changement climatique et la santé, a été menée auprès de plus de 4 500 professionnels de santé en exercice à travers le monde (kotcher, 2021). les résultats de l’étude ont confirmé le fait que ceux-ci ont majoritairement appréhendé la réalité du changement climatique et les conséquences sanitaires qui en découlent. mais, bien qu’ils se reconnaissent responsables d’en informer le public et les décideurs politiques, ils s’en sentent empêchés par contrainte de temps, a fortiori avec la charge de travail supplémentaire que la crise de covid-19 a engendré. mais ils évoquent aussi le manque de supports de formation et de communication adaptés. 41 % des répondants estiment qu’ils manquent de connaissances sur le sujet. engagement systémique – interindividuel, interdisciplinaire, interprofessionnel pour transformer l’économie et les pratiques de santé à la hauteur des défis écologiques et sanitaires actuels, l’engagement de l’ensemble des parties prenantes est nécessaire, c’est-à-dire de l’ensemble des personnes ayant un intérêt ou une relation avec les activités menées au sein du cabinet dentaire et, au-delà, de toutes les activités de santé. intégrer une démarche écoresponsable est l’opportunité de communiquer sur les actions et engagements de la structure et des membres de son équipe avec ces parties prenantes. c’est inviter ainsi, patients, usagers, organisations professionnelles, fabricants, fournisseurs ou encore personnalités politiques, à intégrer à leur tour la maîtrise de l’impact environnemental au cœur de leurs activités et à collaborer pour innover et développer ensemble la démarche et promouvoir la santé planétaire. le sujet du coût économique de l’accompagnement a été peu ou pas abordé lors de la conduite de ce projet qui a été soutenu financièrement par un organisme public. les pcp auraient souhaité avoir accès à plus de formations, de temps de management direct de l’ensemble des membres de leur équipe. ces demandes sont pertinentes mais représentent un temps et une charge de travail conséquents. la plupart des pcp proposent une pérennisation de ce projet grâce au soutien des organisations professionnelles publiques. ce point de vue est intéressant car il suppose une gestion et une prise en charge de la protection de la santé de l’équipe soignante et de celle des écosystèmes par les politiques publiques. ce soutien universel permet d’éviter la démarche lucrative d’un accompagnement par des cabinets de conseil privés qui supposent un engagement financier supplémentaire de la part des praticiens et offre ainsi un accès équitable à la démarche de santé durable et planétaire. conclusion le projet peps a été l’opportunité de concevoir et d’expérimenter un projet promoteur valorisant le fait que l’environnement qu’il soit global, local, privé ou professionnel est un facteur déterminant de la santé. il participe à terme à faciliter le passage à l’action par la création d’une démarche positive, ajustée et évolutive selon les besoins et attentes de terrain des soignants. la démarche d’écoresponsabilité intégrée et adaptée à l’exercice en cabinet dentaire ou médical sera d’autant plus ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 35 dynamisée et pérennisée que l’approche en cobénéfices sanitaires, sociaux et écologiques sera valorisée. un autre levier majeur est celui de la formation de l’ensemble des acteurs de santé. mettre en œuvre une démarche écoresponsable en santé, via des actions d’atténuation et d’adaptation, est une invitation à repenser, innover, réinventer nos pratiques. la transition écologique du système de santé doit être abordée et accueillie comme une opportunité à faire converger la soutenabilité environnementale et la promotion de la santé, ces deux voies d’action sont en interrelation, promotrices de santé planétaire. de fait, les professionnels de santé ont un rôle majeur à jouer dans la transformation écologique en tant qu’acteur et également en tant qu’ambassadeur auprès des populations. mener ce projet a permis de communiquer, audelà des professionnels de la santé bucco-dentaire exerçant en bretagne sur les avantages à intégrer une démarche écoresponsable en cabinet de santé ou cabinet médical. le message actuel peut prendre la forme d’un nudge (huyard, 2016). si des praticiens ont réussi à intégrer une telle démarche au cœur de leurs pratiques, pourquoi pas vous ? references baras, a. (2021). guide du cabinet de santé écoresponsable. les presses de l’ehesp. bruntland, g.h., (1987) commission mondiale sur l'environnement et le développement. notre avenir à tous. oxford university press duane, b., berners lee, m., blanc, s., stancliffe, r., steinbach, je. (2017) an estimated carbon footprint of nhs primary dental care within england. how can dentistry be more environmentally sustainable? british dental journal, 223, 589 – 593. https://doi.org/10.1038/sj.bdj.2017.839 duane, b., ramasubbu, d., harford, s., steinbach, i., swan, j., croasdale, k., stancliffe, r. (2019) environmental sustainability and waste within the dental practice british dental journal, 226, 611–618. https://doi.org/10.1038/s41415-019-0194-x eckelman, m.j., sherman, j.d., macneill, a.j. (2018) life circle environmental emissions and health damages from the canadian healthcare system: an economicenvironmental-epidemiological anlysis. plos medicine, 31;15(7). https://doi.org/10.1371/journal.pmed.1002 623 folke, c., polasky, s., rockström, j., galaz, v., westley, f., lamont, m., scheffer, m., österblom, h., carpenter, s.r., chapin, f.s. 3rd, seto, k.c., weber, e.u., crona, b.i., daily, g.c., dasgupta, p., gaffney, o., gordon, l.j., hoff, h., levin, s.a., lubchenco, j., steffen, w., walker, b.h.. (2021) our future in the anthropocene biosphere. ambio, 50(4), 834869. https://doi.org/10.1007/s13280-02101544-8 karliner, j., slotterback, s., boyd, r., ashby, b., steele, k. (2019) l’empreinte climatique du secteur de la santé. comment le secteur de la santé participe à la crise climatique mondiale et les possibilités d’action. rapport hcwh arup. https://noharmeurope.org/sites/default/files/documentsfiles/6718/french_healthcaresclimatefoot print_091619_web.pdf horton, r., lo, s. (2015) planetary health: a new science for exceptional action. the lancet, 386(10007). https://doi.org/10.1016/s01406736(15)61038-8 huyard, c., (2016) « nudges » : validité, limites et enjeux éthiques, notamment en santé. médecine/sciences, 32(12), 1130-1134. https://doi.org/10.1051/medsci/201632120 18 iliadi, a., koletsi, k., eliades, t., eliades, g. (2020) particulate production and composite dust during routine dental procedures. a systematic review with meta-analyses. materials, 13 (11), 2513 https://doi.org/10.3390/ma13112513 kotcher, j., maibach, e., miller, j., campbell, e., aqodmani, l., maiero, m., wyns, a. (2021). views of health professionals on climate change and health : a multinational survey study. the lancet planetary health, 5(5), 316-323. https://doi.org/10.1016/s25425196(21)00053-x malik, a., lenzen, m., mcalister, s., mcgain, f. (2018) the carbon footprint of australian health care. lancet planetary health, 2(1), 27-35. https://www.nature.com/bdj https://www.nature.com/bdj https://doi.org/10.1038/sj.bdj.2017.839 https://doi.org/10.1038/s41415-019-0194-x https://doi.org/10.1371/journal.pmed.1002623 https://doi.org/10.1371/journal.pmed.1002623 https://doi.org/10.1007/s13280-021-01544-8 https://doi.org/10.1007/s13280-021-01544-8 https://noharm-europe.org/sites/default/files/documents-files/6718/french_healthcaresclimatefootprint_091619_web.pdf https://noharm-europe.org/sites/default/files/documents-files/6718/french_healthcaresclimatefootprint_091619_web.pdf https://noharm-europe.org/sites/default/files/documents-files/6718/french_healthcaresclimatefootprint_091619_web.pdf https://noharm-europe.org/sites/default/files/documents-files/6718/french_healthcaresclimatefootprint_091619_web.pdf https://doi.org/10.1016/s0140-6736(15)61038-8 https://doi.org/10.1016/s0140-6736(15)61038-8 https://doi.org/10.1051/medsci/20163212018 https://doi.org/10.1051/medsci/20163212018 https://doi.org/10.3390/ma13112513 https://doi.org/10.1016/s2542-5196(21)00053-x https://doi.org/10.1016/s2542-5196(21)00053-x ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 36 https://doi.org/10.1016/s25425196(17)30180-8 martin, n., sheppard, m., gorasia, g., arora, p., cooper, m., mulligan, s. (2021) awareness and barriers to sustainability in dentistry: a scoping review. journal of dentistry, 112:103735. https://doi.org/10.1016/j.jdent.2021.10373 5 meadows, d.h., meadows, d.l., randers, j., behrens, w.w.iii. (1972). the limits to growth: a report for the club of rome’s project on the predicament of mankind. universe books. national health service. (2020). delivering a « net zero » national health service. rapport. persson, l., carney almroth, b.m., collins, c.d., cornell, s., de wit, c.a., diamant, m.l. fantke, p., hassellov, m., mac leod, m., ryberg, m.w., jørgensen, p.s., villarrubiagómez, p., wang, z., zwicky hauschild, m. (2022). outside the safe operating space of the planetary boundary for novel entities. environ. sci. technol. 56, 3, 1510–1521. https://doi.org/10.1021/acs.est.1c04158 pockrass, f., pockrass, i. (2008). the four ”rs” of ecofriendly dentistry. american dental hygienists association, 22(8), 18-21. the shift project. (2021) décarboner la santé pour soigner durablement. rapport. wang-erlandsson, l., tobian, a., van der ent, r. j., fetzer, i., wierik, s., porkka, m., staal, a., jaramillo, f., dahlmann, h., singh, c., greve, p., gerten, d., keys, p.w., gleeson, t, cornell, s. e., steffen, w., bai, x., rockström, j., (2022). a planetary boundary for green water. nature reviews earth & environment, 3, 380–392. https://doi.org/10.1038/s43017-022-002878 whitmee, s., haines, a., beyrer, c., boltz, f., capon, a.g., de souza dias, b. f., ezé, a., frumkin, h., gong, p., tête, p., horton, r., mace, g.m., marten, r., myers, s.s., nishtar, s., osofsky, s.a., pattanayak, s.k., pongsiri, m.j., romanelli, c., soucat, a., véga, j., yach d. (2015). safegurading human health in the anthropocen epoch: report of the rockfeller foundation-lancet commission on planetary health. the lancet, 386/10007, 1973-2028. https://doi.org/10.1016/s01406736(15)60901-1 https://doi.org/10.1016/s2542-5196(17)30180-8 https://doi.org/10.1016/s2542-5196(17)30180-8 https://doi.org/10.1016/j.jdent.2021.103735 https://doi.org/10.1016/j.jdent.2021.103735 https://doi.org/10.1021/acs.est.1c04158 https://doi.org/10.1038/s43017-022-00287-8 https://doi.org/10.1038/s43017-022-00287-8 https://doi.org/10.1016/s0140-6736(15)60901-1 https://doi.org/10.1016/s0140-6736(15)60901-1 ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 37 figure 1. étapes du projet prévention environnement patients soignants ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 38 figure 2. postes d’activité du cabinet de santé à impact environnemental adapté de guide du cabinet de santé écoresponsable, par baras, a., 2021, presses de l’ehesp, p.85. ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 39 figure 3. exemple d’une fiche pratique confiée aux pcp et propositions d’objectifs à adapter à leur contexte ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 40 figure 4. evolution des scores entre les auto-évaluations initiale et finale pour l’ensemble des pcp ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 41 figure 5. les trois piliers de la santé durable dans les pratiques de santé ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 42 fichier supplémentaire les thématiques et l’orientation des objectifs proposées dans le cadre du projet peps energies et gaz à effet de serre/ maîtrise des consommations d’énergie et des ressources et des émissions de ges directes : la première étape est de chercher à réduire les consommations et le gaspillage des ressources nécessaires à l’activité professionnelle quotidienne. ces mesures peuvent concerner les consommations d’énergie liées au bâti et aux activités de soin et d’entretien, les déplacements et le transport des personnes qui visitent ou exercent au sein du cabinet ou encore les activités numériques de gestion ou de télémédecine. une fois ces consommations limitées au strict minimum, l’impact écologique de celles-ci peut encore être minimisé en visant l’efficacité énergétique. a service ou confort égal, concernant un bâti, un transport, un équipement électrique par exemple, le rapport entre l’énergie utilisée et l’énergie totale consommée pour le faire fonctionner est optimisée. vient ensuite le choix de se fournir en énergies renouvelables afin de soutenir la transition énergétique via l’utilisation d’une énergie moins carbonée. « l’énergie la plus écologique est celle que l’on ne dépense pas » afin de mener une démarche écologique efficace, il est indispensable d’arbitrer les actions après avoir observé quels sont les postes les plus émetteurs. si l’objectif est la réduction des émissions de ges directes au cabinet dentaire, à défaut d’avoir accès à un calculateur carbone spécifique à la pratique de médecine bucco-dentaire, la lecture des études quantitatives ayant été publiées sur le sujet est opportun. elles sont encore peu nombreuses dans le secteur de la dentisterie. au royaume-uni, le national health service (nhs) a entrepris une campagne pour atteindre un objectif zéroémission en 2030, pour cela les sources d’émissions directes et indirectes ont été strictement évaluées. alors que le bilan global estime à 4 % la part du système de santé des émissions nationales totales, le secteur de la médecine bucco-dentaire représente une part proche de 3 % de celles-ci. cette proportion est du même ordre de grandeur que celle comptabilisée en australie (nhs, 2020 ; duane et al., 2017 ; malik et al., 2018). ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 43 le bilan réalisé par le nhs permet d’observer la répartition des différents postes d’activité émetteur de ges et ainsi cibler les plus importants. ainsi, on observe que la majeure partie des ges émis (64,5 %) provient du transport des personnes usagers du cabinet dentaire, qu’il s’agisse de l’équipe soignante, des patients, ou des différents prestataires. le 2ème poste le plus émissif est le poste des achats puis vient celui de la consommation d’énergie nécessaire au fonctionnement des structures de soin. les émissions provenant de l’usage du protoxyde d’azote, du traitement des déchets et de la consommation d’eau ne représentent relativement qu’une faible proportion des émissions totales (1,2 %). ainsi, promouvoir la mobilité douce ou active est un objectif qui peut sembler prioritaire. ces résultats ne sont pas transposables à part égale par exemple au contexte de la france en raison de la part plus importante du nucléaire dans le mix énergétique français par rapport au mix anglais, de plus les moyens de déplacement, le volume de consommation des soins, les moyens techniques et technologiques et la nature même de ces soins peuvent différer largement d’un pays à l’autre. mais ils ont l’avantage de fournir un ordre de grandeur. achat/ démarche d’achat écoresponsable : le principe général est de consommer moins et mieux. le prérequis est de prendre conscience que la majorité des produits et services proposés ou mis sur le marché ne peut être associée à un « zéro impact » pour l’environnement. l’empreinte environnementale du bien doit être considéré sur l’ensemble de son cycle de vie (acv), de l’étape d’extraction des matières premières et énergies nécessaires à sa fabrication, puis à son conditionnement, son transport, son usage jusqu’à l’étape de son élimination. « le meilleur achat est celui que l’on ne fait pas » pour limiter le nombre de produits ou services achetés au strict nécessaire, il est utile de déterminer les besoins à satisfaire, d’arbitrer utile vs futile. il s’agit de mettre en place une gestion des stocks adaptée au contexte du cabinet, mener une réflexion sur l’usage unique ou encore optimiser la longévité des biens et équipements grâce à la maintenance et le suivi des consignes d’usage. si un achat est inévitable, il s’agit alors d’opter pour le produit à moindre impact en optant pour l’alternative écolabellisée ou produite localement par exemple. en cabinet de santé, cette démarche va concerner également les produits de santé, médicaments, dispositifs médicaux et cosmétiques. elle s’appuie sur l’intégration du critère environnemental dans la balance bénéfice/risque classique et sur la démarche d’écoprescription qui est le fait de maîtriser l’impact écologique de la prescription ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 44 médicale. celle-ci peut être intégrée avant, pendant et après l’acte médical de prescription : avant, en prescrivant des alternatives non médicamenteuses comme l’hypnose, la méditation, l’activité physique ou la prescription de nature ; pendant, en s’assurant de la littératie et de l’observance ou en ne prescrivant que les médicaments dont le patient a réellement besoin ; après, en s’assurant que les déchets médicamenteux non utilisés ne seront pas jetés dans le circuit d’eau potable ou les déchets ménagers par exemple. eau/ gestion de l’eau et des effluents : la maîtrise de l’empreinte eau vise à maîtriser les consommations d’eau douce tout en limitant le rejet de polluants dans les eaux usées ou effluents. (figure 2) l’utilisation mondiale de l’eau et la pollution chimique font partie des 9 limites ou frontières planétaires au-delà desquelles la sauvegarde des écosystèmes est susceptible d’être compromise et la vie humaine menacée. ces deux limites sont considérées par le stockholm resilience center comme dépassées (persson et al., 2022, wangerlandsson et al., 2022). la pollution chimique ou « entités nouvelles dans la biosphère » concerne entre autres les métaux lourds, les nanoparticules et les polymères plastiques. ces derniers sont couramment utilisés au sein des activités de médecine bucco-dentaire dans le cadre des activités thérapeutiques ou de la gestion du risque infectieux. l’objectif est de maîtriser cette empreinte sans nuire à la qualité et à la sécurité des soins. ainsi, la démarche nécessite une vraie réflexion sur la balance bénéfice/risque de chaque geste ou action. la démarche « rss » pour réduction/substitution/suppression est appropriée à cette nécessité. si le produit est indispensable à l’activité du cabinet de santé, il ne peut être supprimé. il est alors envisagé de le substituer par un autre produit moins nocif à efficacité équivalente, un produit écolabellisé par exemple. si la substitution n’est pas possible la gestion du risque nécessite de réduire les expositions au strict minimum pour protéger l’environnement et la santé au travail. air/ maîtrise de la qualité de l’air intérieur : l’air intérieur des cabinets dentaires est plus pollué que de nombreux autres lieux de vie ou d’exercice professionnel du fait de la spécificité des activités qui y sont exercées (iliadi et al., 2020). les sources de pollution physiques et chimiques sont multiples et de natures diverses : aérosols contaminés issus de l’activité de soins, vapeurs, microparticule ou nanoparticules émanant des activités de polissage, de combustion ou de l’utilisation de produits de désinfection et de dispositifs médicaux tels que le mercure, le ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 45 méthacrylate de méthyle, le latex ou encore certains solvants. la première étape de la démarche est de repérer les sources d’exposition et les risques qu’elles entrainent. il s’agit des risques pour l’environnement via le protoxyde d’azote (meopa) et les composés organiques volatils notamment qui participent à l’effet de serre. les risques pour la santé des membres de l’équipe soignante via leur exposition chronique à ces polluants chimiques et physiques sont l’augmentation du risque d’exposition biologique à des infections, de développement des allergies, de l’asthme, des pathologies cardio-vasculaires ou des cancers bronchiques. les risques sont aussi liés à l’exposition aux perturbateurs endocriniens et substances cancérigènes mutagènes reprotoxiques (cmr) pour les publics les plus vulnérables : patients et soignants en âge de procréer, femmes enceintes et allaitantes, jeunes enfants et adolescents. les chirurgiens-dentistes et assistants dentaires sont reconnus comme étant un public à risque accru d’exposition à ces substances. une fois repéré, le risque doit être géré sur le même principe que pour la gestion de la qualité de l’eau, à savoir la démarche rss. il est indispensable d’intégrer une démarche de protection collective par l’optimisation du renouvellement de l’air. plusieurs voies d’actions sont possibles. déchets/ gestion des matières premières et résiduelles : tout doit être mis en œuvre pour avant tout maîtriser la consommation des matières premières puis pour optimiser la gestion des matières résiduelles. il s’agit de produire le moins de déchet possible puis de favoriser le recyclage de ce qui n’aura pu être évité. pour cela la démarche 5r est un outil facilitateur (baras, 2021). les praticiens accompagnés dans le cadre du projet peps ont pu afficher la démarche 5r en salle de pause par exemple et inviter tous les membres de l’équipe à y participer. cette démarche émane de la démarche « 3r » dont l’origine daterait des années 70 avec la mise en place du jour de la terre. les « 3r » qui signifiaient alors réduire, réutiliser, recycler. en dentisterie, les associations nordaméricaines l’ont fait évoluer vers les 4r (pockrass, 2008). aujourd’hui, c’est la démarche 5r qui est proposée. pour la mener, la réflexion débute par le fait de refuser, puis réduire ce qui n’est pas refusable ou évitable. la troisième étape incite à réutiliser ou réemployer tout objet susceptible de l’être. enfin, l’action de recycler n’arrive qu’en quatrième position, le recyclage présentant des limites écologiques et économiques. le 5ème r peut être de repenser son activité ou ses besoins de manière transversale afin de maîtriser et compléter cette démarche de ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 46 manière globale et vertueuse, comme réorganiser son agenda pour poser des rendez-vous plus longs et ainsi diminuer le nombre de rendez-vous nécessaires pour un même plan de traitement et donc à terme diminuer le volume de déchets et de déplacements. c’est aussi repenser son activité pour faire une place toujours plus importante à la prévention et à la promotion de la santé. pour les particuliers, le cinquième r est couramment rendre à la terre (rot en anglais) ou composter. « le meilleur déchet est celui qui n’est pas produit » dans l’action de réduire, la réflexion à mener sur l’usage unique et a fortiori sur l’usage des plastiques est un levier majeur de réduction de l’impact écologique d’un cabinet dentaire. les études publiées récemment sur cette réflexion concluent que l’optimisation de la gestion des déchets est possible. elle nécessite d’arbitrer ce qui est utile ou futile pour l’assurance qualité/sécurité des soins et d’observer quelles sont les alternatives aux consommables jetables indispensables. (duane et al., 2019 ; martin et al., 2021). ces études affirment également que plus d’études probantes sont nécessaires pour cadrer les recommandations. de plus ces dernières varieront d’un pays à l’autre selon les modes de traitement des déchets, les acv de chaque consommable ou encore les recommandations professionnelles en vigueur. en effet, pour arbitrer s’il est plus efficace écologiquement d’opter pour l’alternative réutilisable d’un bien vs l’usage unique, il est indispensable d’avoir accès aux résultats du calcul de son empreinte écologique. cet affichage environnemental est encore peu intégré par les fabricants et distributeurs. intégration et développement/ management responsable et communication de la démarche : pour cette piste d’action, la première étape est de formaliser l’intégration de la démarche écoresponsable à la gestion globale du cabinet et à sa vision. elle doit être proposée de manière positive, engageante et systémique selon l’approche en co-bénéfices. les valeurs et motivations peuvent différer d’un professionnel à l’autre au sein d’une même équipe. que le moteur soit d’ordre écologique, économique, social ou sanitaire – santé publique et/ ou santé au travail, la démarche et ses bénéfices multiples sauront les alimenter. concernant la santé au travail, l’intégration de la démarche va présenter des co-bénefices multiples tels que l’amélioration de la qualité de l’air intérieur, la maîtrise de l’exposition aux produits chimiques, la motivation à faire plus d’activité physique (transports actifs), la prévention des risques psycho-sociaux par l’amélioration de la qualité ihtp, 2(3), si: 27-47, 2022 cc by-nc-nd 4.0 issn 2563-9269 47 de vie au travail – projet commun porteur de sens, écoute des besoins, motivations intrinsèques, sécurité grâce à la pérennité économique de la structure par exemple. l’objectif suivant est de communiquer à l’ensemble des usagers et des parties prenantes du cabinet l’intégration de la démarche, en rédigeant une charte personnalisée par exemple. elle permet de communiquer les valeurs du chirurgien-dentiste et des membres de l’équipe et leurs motivations à promouvoir la santé orale et globale et la santé planétaire. au-delà d’être acteurs de la transformation écologique, les professionnels de santé gagnent à en être également des ambassadeurs. ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 88 women’s empowerment under the lens of global health equity: literature review of challenges, best practices, and societal impact walaa al-chetachi1, agafya krivova1, hana’a badran1, saida azam1, eman radwan1,2, yasmine shalaby1,3, mithila orin1, edith quintanilla1, shafi bhuiyan1,4,5 1ryerson university, toronto, canada; 2queen’s university, kingston, canada; 3mcmaster university, hamilton, canada; 4university of toronto, toronto, canada; 5bangladesh university of health sciences corresponding author: s. bhuiyan (shafi.bhuiyan@utoronto.ca) abstract introduction: women’s empowerment refers to strengthening the social, economic, and educational powers of women. numerous global initiatives have been implemented to enable women to make decisions about their health and lives. the purpose of this literature review was to review women’s health barriers, related best practices, and their impacts on women's empowerment in the global context. methods: we comprehensively searched databases: pubmed, cinahl, and google scholar and key program websites. to expand our review, we used a snowball strategy to scan articles, documents, reports, and research outputs of global programs and best practices to overcome barriers. also, we screened publications posted on websites of organizations working on women’s empowerment and monitoring the sustainable development goals progress. results: findings suggest significant advancements have been made in the status of women's health over the past two decades. however, the covid-19 pandemic has aggravated health barriers, impeding, and even reversing progress, which has resulted in widening women’s inequity in access to health care services worldwide. conclusions: findings suggest that successful and sustainable programs should have a multisectoral, multilevel and multistakeholder, diversified interventions approach with social empowerment, as well as the need for legislative enforcement against discrimination and harmful practices towards women. keywords literature review; global initiative; women’s empowerment; women’s health introduction women’s empowerment and promoting women’s rights have emerged as part of a major global movement and continue to break new ground in recent years. these efforts are essential to the health and social development of families, communities, and countries (world health organization, 2019a). the world health organization (who) defined health as “a state of complete physical, mental and social wellbeing and not merely the absence of disease or infirmity” (world health organization, 2021b). women empowerment refers to strengthening the social, economic, and educational powers of women and it is defined as “the process by which women take control over their lives, acquiring the ability to make strategic choices” (un commission on the status of women, 2002, p.1). numerous global initiatives are implemented to empower women from the health point of view and to address the most impactful and essential health-related challenges. the united nations (un) 2030 agenda for sustainable development embraces three main principles, with the second and third ones emphasizing “leave no one behind (lnob)” and “gender equality and women's ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 89 empowerment” respectively (united nations sustainable development group (unsdg), 2021). whereas sustainable development goal (sdg) 3 focuses on health “for all at all ages,” and sdg 5 highlights women's empowerment and reinforces the necessity of scientifically robust indicators to address women’s multiple health priorities (united nations department of economic and social affairs (desa), 2021). the sdgs urge universal health coverage as necessary for meeting essential women’s health needs. hence, barriers to women’s empowerment including social, cultural, financial, legal, and structural gender inequalities still impede women’s autonomy and decision-making power over their health and limit their healthcare services access and utilization (world health organization, 2019a, p.9). various research illustrates the significant impact of the barriers mentioned above on women’s health. who 2017 report showed that each day about 810 women around the world lost their lives due to pregnancy and childbirth preventable causes, with 94% of these deaths reported in low-resource settings (world health organization, 2019b). moreover, 66% of maternal deaths occurred in the sub-saharan africa region due to a lack of access to sexual and reproductive care (world health organization, 2019c, p.33). statistics show that 15% of women in the uk have experienced mental illness, including anxiety, posttraumatic stress disorder, and depression, during the perinatal period. these mental illnesses account for 9% of maternal mortality (ford et al., 2019a). a report from the us demonstrated that about 900,000 women develop postpartum depression (ppd) each year; however, only 6% of them ask for psychological support (grissette et al., 2018). several systematic studies indicated that the main barriers to healthseeking behavior for ppd are lack of knowledge and support, fear of social stigma, and judgment or inability to guarantee their rights in child custody (ford et al., 2019; hadfield & wittkowski, 2017). who recorded that cardiovascular diseases (cvds) mortality among women in lowand middle-income countries (lmics) is 1.7 times higher compared to those living in high-income countries (hics) (world health organization, 2016). this reflects a lack of awareness of women’s cvds symptoms among patients themselves and healthcare providers, leading to delays in diagnosis, hospitalization, and treatment (world health organization, 2019a, p.18). any emergency, such as natural disaster, war, conflict, or pandemics, magnify the barriers and worsen the condition of vulnerable people, especially women and children. for instance, the recent covid19 pandemic exacerbates fears of getting infected and limits women's ability to access healthcare services and programs; thus, it impedes or even reverses the progress of ongoing initiatives (cousins, 2020). violence against women and girls (vawg) has been intensified during the last 12 months of the pandemic, with 243 million women and girls having experienced physical or sexual violence (united nations women organization (un women), 2020). france reported an increase of vawg cases by 30% (united nations department of economic and social affairs, 2020, p.19). moreover, un women recently reported a five-times increase in the helpline calls due to intimate partner violence (un women, 2021a). women account for more than 2/3 (70%) of healthcare providers worldwide and are more likely to be at the frontline. (united nations department of economic and social affairs, 2020, p.10). women also contribute to unpaid healthcare services up to 2.35% of global gdp, which is about us$ 1.5 trillion (united nations department of economic and social affairs, 2020, p.14). women also make up most of support staff, including cleaners, laundry, and catering workers, who have a higher risk of covid-19 exposure (united nations department of economic and social affairs, 2020, p.10). moreover, in the us, recent research showed that women constitute 3/4 of covid-19 infected healthcare workers (team et al., 2020). there are numerous studies on specific topics related to women's empowerment; however, there is limited information available that focuses on all aspects of women's health empowerment (andrés lópez cabello & ana cecilia gaitán, 2021; clark helen & sy elhadj as, 2020; heymann et al., 2019). thus, this literature review aims to investigate women’s empowerment health barriers in terms of physical, mental, and social well-being in the global context and describe the best practices, programs, and interventions and their impacts on health. we consider this review as a guideline for policy makers and other stakeholders to facilitate knowledge ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 90 translation and address women’s multiple health priorities. methods journal articles and grey literature were reviewed to identify best practices and programs aimed at improving women’s health by addressing gender inequity. pubmed, cinahl, and google scholar were also reviewed for relevant articles, as well as programs and initiatives published on websites of the organizations that address global health issues. websites searched included who, the united nations (un), the united nations children's fund (unicef), the united nations population fund (unfpa), and the international center for research on women (icrw). keywords used included: “barriers of women empowerment,” “women’s physical health,” “women’s mental health,” “social determinants of women’s health,” and “covid-19 impact on women’s health”. to expand our search, a snowball strategy was used by scanning the references list of articles, documents, reports, and varied global programs. the reviewed resources were articles written in english and containing the most recent data. we focused on displaying the gaps between lmics vs. hics and women vs. men to illustrate the current situation and provide the context for potential advancement. results women physical wellbeing challenges and best practices the physical health of women is not only limited to equal access to essential health care services on endemic infectious diseases or emergency services, but also encompasses the access to female-specific care to reduce maternal mortality, eliminate female genital mutilation and violence against women, and decrease the burden of non-communicable diseases (ncds) (cardiovascular diseases; cancers; chronic respiratory diseases; and diabetes). many stakeholders strive to improve women’s health and prevent ncds premature deaths, such as “the ncd alliance” which consists of international diabetes federation, international union against tuberculosis and lung disease, union for international cancer control, and world heart federation, that was established in 2008 (ncd alliance, 2015); “the taskforce on women and ncds” and many others (women and ncds taskforce, 2021). according to un and who data published in 2019, out of 193 countries, only 35 will achieve the 2030 sustainable development goal (sdg) target 3.4 for women, which aim to decline the probability of ncd related deaths by 1/3 among 30 to 70 years old women compared to 2015 levels (ncd alliance, 2019). most maternal deaths worldwide can be prevented through access to quality health services. recent statistics highlight health inequality between rich and poor countries, where the maternal mortality of low-income countries (lics) is 130 folds more than in hics (world health organization, 2021c). over a five-year period (2014 – 2019), it was reported that more than 80% of all deliveries were attended by skilled health professionals worldwide (world health organization, 2021a). in fact, almost 2/3 of maternal deaths, stillbirths, and newborn deaths (67%, 65%, 64%, respectively) could be averted by midwifery service (nove et al., 2021). however, there is still a shortage of approximately 900,000 midwives. furthermore, the covid-19 pandemic has magnified this problem as midwives have been transferred to other healthcare services (united nations population fund (unfpa), 2021). hence, maternal mortality increased by 2.3 per 100,000 deliveries compared to the pre-covid era (united nations development programme (undp), 2020, p.17). table 1 describes certain women's physical health challenges, such as maternal mortality, female genital mutilation (fgm), violence against women and ncds, and the interventions with their impacts. mental well-being globally, mental health conditions are on the rise (who, 2021c). in 2017, it was found that almost 1 billion people, without significant gender difference, suffered from a mental health problem or substance abuse (our world in data, 2021). this accounted for 14% of the global burden of disease, with the majority (75%) of people affected in many lics lacking access to the required standard treatment (who, 2020f). ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 91 specifically, suicide accounted for more than 700,000 deaths annually, with 77% occurring in lmics (who, 2021b, p.1), with the highest rate of 7.1 per 100,000 among females (who, 2021f). moreover, suicide is considered the third leading cause of death among girls aged 15–19 (who, 2021b, p.1). in addition, depressive disorders cause about 1/3 of psychiatric illness disability among men compared to 2/5 among women (who, 2020g), affecting almost 1 in 4 women in lmics (ncd alliance, 2019). moreover, in 2020, it was found that unipolar depression was the second leading cause of disability, with women affected 2 times more often compared to men (who, 2020g). in developed countries, approximately 20% of men compared to 8% of women have alcohol dependence during their lifetime (who, 2020g). however, a us study reported that during the covid-19 pandemic, there was a more than 40% increase in the number of heavy drinking days for females over the baseline (0.44 days per month) (pollard et al., 2020). recent statistics showed that about 20% of people who lived in post-conflict settings suffered from mental health problems (who, 2021c). moreover, it was reported that women and children formed 80% of the 50 million people affected by violent conflicts, civil wars, disasters, and displacement (who, 2020g). the covid-19 pandemic has interrupted essential mental health services in 93% of countries globally, despite increased demand (the world bank, 2021b). in table 2, we summarize the most prevalent challenges related to mental health, with best practices and their impact. namely, general mental health challenges, mental illness related to physical abuse, eating disorder (ed), and perinatal depression (prenatal and postnatal). social well-being who defined the social determinants of health (sdh) as the non-medical factors in which people are born, grow, work, live, and age. for instance, “poor health” is claimed 100% more often in the low educated population compared to people with postsecondary education. moreover, the difference in life expectancy between highand low-income countries accounts for 19 years (who, 2021h). the united nations educational, scientific and cultural organization (unesco) recent report illustrates that due to the covid pandemic, 11 million adolescent girls are not expected to return to school (unesco, 2021c). sdh are more essential than lifestyle choices at affecting peoples’ health, where many studies illustrate that these factors influence 30-55% of health outcomes (who, 2021h). table 3 demonstrates particular social challenges that hinder women’s empowerment and impact their health, as well as the global and local best practices to address these challenges. discussion according to our findings, significant advancements have been made in women's health status over the past two decades. the major turning points in achieving gender equity are ratifications of the beijing declaration and the sustainable development goals (sdgs). some countries (e.g., norway, australia) have a proven success in reaching all 3 sdgs targets. maternal mortality goal is achieved by developed countries as well as some developing countries (e.g., brazil, argentina, egypt, morocco, saudi arabia, iran, oman, malaysia, thailand). while gender parity goals are achieved by few countries (argentina, namibia, norway, sweden), others are still lagging. moreover, the covid-19 pandemic has aggravated health barriers, impeded, and even reversed indicators progress, and revealed women's inequality in access to health care services worldwide. overall, a substantial decline of 38% in mmr was achieved globally between 2000 and 2017, with the best outcome of a 60% reduction reported in southern asia (from an mmr of 384 down to 157 per 100,000 live births) (world health organization, 2019d). one of the most important interventions attributed to maternal death reduction is the attendance of skilled health professionals, where more than 65% of these deaths could be averted by midwives’ assistance (nove et al., 2021). unsafe abortions alone cause 4.7% 13.2% of maternal deaths annually (who, 2021k). hence, unwanted pregnancy prevention is highly essential, particularly ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 92 among adolescents, through easy access to family planning and safe abortion services. in 2020, unfpa reported that contraceptive provision prevented 14.5 million unwanted pregnancies and 4.1 million unsafe abortions and saved the lives of 39,000 mothers (unfpa, 2020b). another point to consider is the political influence on women’s empowerment and health autonomy. 700 million women's lives are affected by inaccessibility to safe and legal abortion services, causing 23,000 women’s deaths (center for reproductive rights, 2021a). moreover, it leads to 7 million hospital admissions annually in developing countries with the cost of more than half a billion us$ to manage unsafe abortion complications globally (who, 2021k). the legalization of abortion and sexual education are proven to prevent death and disability (who, 2021k). encouragingly, more than 600 million women, or 37%, ages ranging between 15-49 years, in 73 countries worldwide, are legally able to request an abortion (center for reproductive rights, 2021b, p.1). it could be done mainly within the first 12 weeks of pregnancy, and even in some countries, women could terminate their pregnancies up to 22 weeks, at their personal request (i.e., iceland, some states in australia) (center for reproductive rights, 2021a). despite numerous interventions to tackle vawg, as the covid-19 pandemic evolves, an alarming level of violence has been reported around the globe, with some experts describing it as “the shadow pandemic.” moreover, current statistics do not reflect the actual extent of the problem due to underreporting, where fewer than 4 in 10 victims reporting or seeking any kind of help. lack of access to the helplines and disruption of public health and social services are the main reasons for inadequate reporting (phumzile mlambo-ngcuka, 2020). currently, women in 25% of countries are not legally protected against domestic violence (phumzile mlambo-ngcuka, 2020). law enforcement, women's education, and economic independence, as well as school and community awareness programs targeting women and men, are fundamental to combat vawg (un women, 2020a), (lancet child & health, 2021). the cornerstone to achieving sdg targets is education. evidence reveals that women with secondary education compared to those without formal education are more likely to be employed, with a 200% increase in earnings, a 20% drop in mortality among their children under the age of five, a 75% decrease in adolescent pregnancy, and reduction in early marriage to the point where it almost is eliminated (unesco, 2021a, p.6). unfortunately, in 10 countries worldwide (benin, cameroon, guinea, haiti, mali, nigeria, pakistan, papua new guinea, senegal, and timor-leste), the least privileged girls have fewer than 2 years of schooling. this includes over 80% of girls in guinea, mali, and pakistan (unesco, 2021c). this reflects the fact that small monetary incentives for school fees, uniforms, books, and other supplies, such as menstrual hygiene products, are required to enroll girls at school and continue their education (tai kuncio, 2018, p.5). it is predicted that when girls are educated at the same level as boys, this has the potential to add us$ 1 billion annually to the economy of some african countries (unesco, 2021d). moreover, if gender equity is adopted in the labor market, it will add around us$ 30 trillion to the global gdp by 2025 (mckinsey global institute (mgi), 2015, p.8). mental health promotion and awareness programs were proven to alleviate stigma and change attitudes toward mental diseases, provide information about available services, and increase help-seeking behaviors (who, 2021b, p.26). who mental health intervention targeted school students using socioemotional learning curriculum to prevent suicide showed 50-100 healthy life years gained annually per 1 million population globally (who, 2021j, p.5). another mental health initiative is communitybased mental health support, which focuses on human rights and patient recovery, such as keyring living arrangements for mentally ill people. this program demonstrated a 30% reduction in psychiatric inpatient admission and homelessness, a 25% decrease in the necessity of weekly visits for community mental health care providers, and a 20% drop in the need for drug/substance dependence worker weekly visits (who, 2021a). thus, successful, and sustainable interventions resulting in long-term health improvements are found to have multisectoral, multilevel and diversified approaches and social mobilization and empowerment (heymann et al., 2019). finally, ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 93 increasing women's representation in leadership positions will facilitate the initiation and implementation of laws and policies to support equity in all aspects of women’s lives, not only health (heymann et al., 2019). limitation the methodology used was limited to articles written in english, so some articles in other languages might be missed. we excluded all programs, even highquality ones, that were evaluated exclusively by qualitative methods. in addition, we extracted reviews from three electronic databases (pubmed, cinahl, and google scholar) and complemented the search with web screening. hence, our analysis may have missed reviews located within other resources. although there are different types of barriers to women's empowerment, we only searched articles discussing women’s empowerment through the dimension of health and gender equity. this paper also does not focus on cultural and religious differences that might influence the definition of women’s empowerment or mental health. hence, the statistics reported are likely underestimated, especially for women living in developing countries. at the same time, we did not spotlight different gender subgroups due to the scarce amount of disaggregated data. although we comprehensively reviewed global initiatives on women’s empowerment in the context of health, not all ongoing global programs have established reporting and/or monitoring and evaluation systems. our search was constrained by the under-representation of women and underreporting of sex-specific data, especially during the covid-19 pandemic. implications in practice, holistic approach should be considered to achieve women health autonomy embedded in all sectors with a focus on development of gender equity culture, education, economic independency, policy, and legislation, as well as society engagement. other countries shared experience and lesson learnt are crucial to develop a roadmap in adopting successful interventions, programs, legislations, which should be tailored to the cultural context and resources availability of a particular country. this study provides an understanding of women health empowerment barriers and reflects the real situation based on scientific data to study and support interventions and policy changes that may affect and improve not only women health but the whole community. recommendation and concluson exploring the barriers to women’s empowerment through the lens of physical, mental, and social wellbeing dimensions of health has illustrated an in-depth understanding of various factors that should be focused on to achieve health equity. gender norms and relations intersect with socioeconomic, geographic, and cultural factors fueling gender inequities and magnifying these barriers. numerous governmental, non-governmental organizations and stakeholders are continuously working all over the world to overcome these barriers, and many have been able to achieve significant results. while significant advancements have been made in policies towards better equity for women, we still have a long way to cover all the aspects of women’s empowerment. the covid-19 pandemic has aggravated health barriers/challenges, impeded, and even reversed indicators progress, and revealed the extent of women's inequity in access to health care services worldwide. finally, successful, and sustainable programs that achieve long-term health improvements should include a multisectoral approach, multilevel and multistakeholder engagement, diversified interventions, and lastly, social involvement and empowerment. references amiri, s., behnezhad, s. (2021). the global prevalence of postpartum suicidal ideation, suicide attempts, and suicide mortality: a systematic review and metaanalysis. international journal of mental health, 50(4), 311–336. https://doi.org/10.1080/00207411.2021.1959814 anderson, b. o., ilbawi, a. m., fidarova, e., weiderpass, e., stevens, l., abdel-wahab, m., & mikkelsen, b. (2021). the global breast cancer initiative: a strategic collaboration to strengthen health care for non ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 94 communicable diseases. the lancet oncology, 22(5), 578–581. https://doi.org/10.1016/s14702045(21)00071-1/attachment/89ab9a84-39254265-a44f-5be79b711c68/mmc1.pdf andrés lópez cabello, & ana cecilia gaitán. (2021). safe abortion in women’s hands: autonomy and a human rights approach to covid-19 and beyond. health and human rights journal, 23(1), 191–197. https://www.hhrjournal.org/2021/02/perspectivesafe-abortion-within-womens-reach-autonomy-anda-human-rights-approach-to-covid-19-and-beyond/ atuhaire, c., brennaman, l., cumber, s. n., rukundo, g. z., &nambozi, g. (2020). the magnitude of postpartum depression among mothers in africa: a literature review. the pan african medical journal, 37(89), 1– 11. https://doi.org/10.11604/pamj.2020.37.89.23572 beat eating disorders organization. (2021a). about beat. https://www.beateatingdisorders.org.uk/aboutbeat/ beat eating disorders organization. (2021b). beat impact report 2020/21. https://spark.adobe.com/page/xyrtngxswte4n/?utm _source=comms&utm_medium=web&utm_campaig n=impact20-21 bertolote, j. m., & fleischmann, a. (2002). suicide and psychiatric diagnosis: a worldwide perspective. world psychiatry, 1(3), 181. /pmc/articles/pmc1489848/ better help organization. (2021). about us the largest online therapy provider. https://www.betterhelp.com/about/ beyond blue. (2021). anxiety, depression and suicide prevention support. https://www.beyondblue.org.au/ break binge eating. (2021). eating disorder statistics: 65+ unthinkable facts for 2021. https://breakbingeeating.com/eating-disorderstatistics/ canada’s human right commitments. (2020). unesco convention against discrimination in education. http://humanrightscommitments.ca/wpcontent/uploads/2019/04/unesco-conventionagainst-discrimination-in-education.pdf canadian centre on substance abuse. (2016). substance use and suicide among youth: prevention and intervention strategies (topic summary). www.ccsa.ca•www.cclt.ca center for reproductive rights. (2021a). the world’s abortion laws. https://maps.reproductiverights.org/worldabortionl aws ccenter for reproductive rights. (2021b). walm 2021update v1-1. https://reproductiverights.org/wpcontent/uploads/2019/05/walm_2021update_v11.pdf cchávez-tostado, m., chavez, k. v, lópez-valenzuela, g., mercedes hernández-corona, d., gonzález-heredia, t., fuentes-orozco, c., matias chejfec-ciociano, j., georgina guzmán-ramírez, b., flores-becerril, p., alberto reyes-elizalde, e., aldo guzmán-barba, j., josé barbosa-camacho, f., cervantes-pérez, e., cervantes-cardona, g., & gonzalez-ojeda, a. (2020). postpartum depression and breastfeeding practices during the covid-19 pandemic lockdown in mexican mothers: a cross-sectional study. https://doi.org/10.21203/rs.3.rs-443381/v1 cclark helen, & sy elhadj as. (2020). menstrual hygiene and health a call for dignity, rights and empowerment. https://www.who.int/pmnch/media/news/2020/me nstrual_hygiene_health/en/ cohen, r. a., terlizzi, e. p., cha, a. e., & martinez, m. e. (2021). health insurance coverage: early release of estimates from the national health interview survey, 2020 what’s new. cousins, s. (2020). covid-19 has “devastating” effect on women and girls. the lancet, 396(10247), 301–302. https://doi.org/10.1016/s0140-6736(20)31679-2 cyber civil rights initiative. (2021). ccri press releases. https://www.cybercivilrights.org/ccri-press-releases/ european society of cardiology (esc). (2021). heart attack diagnosis missed in women more often than in men. https://www.escardio.org/the-esc/pressoffice/press-releases/heart-attack-diagnosis-missedin-women-more-often-than-in-men family planning 2020. (2020). fp 2020 family planning’s return on investment. https://fp2030.org/sites/default/files/datahub/roi/fp2020_roi_onepager_final.pdf fatori, d., zuccolo, p. f., &polanczyk, g. v. (2020). a global challenge: maternal depression and offspring mental disorders. european child & adolescent psychiatry 2020 29:5, 29(5), 569–571. https://doi.org/10.1007/s00787-020-01556-x ford, e., roomi, h., hugh, h., & van marwijk, h. (2019a). understanding barriers to women seeking and receiving help for perinatal mental health problems in uk general practice: development of a questionnaire. primary health care research & development, 20(e156), 1–8. https://doi.org/10.1017/s1463423619000902 ford, e., roomi, h., hugh, h., & van marwijk, h. (2019b). understanding barriers to women seeking and https://fp2030.org/sites/default/files/data-hub/roi/fp2020_roi_onepager_final.pdf https://fp2030.org/sites/default/files/data-hub/roi/fp2020_roi_onepager_final.pdf ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 95 receiving help for perinatal mental health problems in uk general practice: development of a questionnaire. primary health care research & development, 20(e156), 1–8. https://doi.org/10.1017/s1463423619000902 galmiche, m., déchelotte, p., lambert, g., & tavolacci, m. p. (2019). prevalence of eating disorders over the 2000-2018 period: a systematic literature review. am j clin nutr, 109, 1402–1413. https://doi.org/10.1093/ajcn/nqy342 global education monitoring report team, & unesco. (2021). #hereducationourfuture: keeping girls in the picture during and after the covid-19 crisis; the latest facts on gender equality in education. grisette, b. g., spratling, r., & aycock, d. m. (2018). barriers to help-seeking behavior among women with postpartum depression. journal of obstetric, gynecologic & neonatal nursing, 47(6), 812–819. https://doi.org/10.1016/j.jogn.2018.09.006 hadfield, h., & wittkowski, a. (2017). women’s experiences of seeking and receiving psychological and psychosocial interventions for postpartum depression: a systematic review and thematic synthesis of the qualitative literature. journal of midwifery & women’s health, 62(6), 723–736. https://doi.org/10.1111/jmwh.12669 heyman, j., levy, j. k., bose, b., ríos-salas, v., mekonen, y., swaminathan, h., omidakhsh, n., gadoth, a., huh, k., greene, m. e., & darmstadt, g. l. (2019). gender equality, norms, and health 3 improving health with programmatic, legal, and policy approaches to reduce gender inequality and change restrictive gender norms. the lancet, 393, 2522–2534. https://doi.org/10.1016/s0140-6736(19)30656-7 international association for suicide prevention. (2020). world suicide prevention day 2020 impact report. https://iasp.info/wp-content/uploads/wspd-2020impact-report.pdf international labour organization (ilo). (2019). world social protection report 2017–19: universal social protection to achieve the sustainable development goals. lancet child, t., & health, a. (2021). endemic violence against women and girls. the lancet child & adolescent health, 5(5), 309. https://doi.org/10.1016/s2352-4642(21)00101-2 mckinsey global institute (mgi). (2015). the power of parity: how advancing women’s equality can add $12 trillion to global growth. www.mckinsey.com/mgi. mental health innovation network (mhin). (2021). thinking healthy programme. https://www.mhinnovation.net/innovations/thinkin g-healthy-programme nadia khomami. (2018). scotland to offer free sanitary products to all students in world first. the guardian. https://www.theguardian.com/uknews/2018/aug/24/scotland-to-offer-free-sanitaryproducts-to-all-students-in-world-first national eating disorder information centre (nedic). (2021). nedic about. https://nedic.ca/about/ ncd alliance. (2015). making ncd prevention and control a priority, everywhere. https://ncdalliance.org/ ncd alliance. (2019). delivering healthy lives and wellbeing for women and girls. https://www.thelancet.com/journals/lancet/article/ piis0140-6736 neda. (n.d.). body activism activity guide. retrieved november 14, 2021, from www.myneda.org news european parliament. (2020). female genital mutilation: where, why and consequences. https://www.europarl.europa.eu/news/en/headline s/society/20200206sto72031/female-genitalmutilation-where-why-and-consequences nove, a., friberg, i. k., de bernis, l., mcconville, f., moran, a. c., najjemba, m., ten hoope-bender, p., tracy, s., & homer, c. s. e. (2021). potential impact of midwives in preventing and reducing maternal and neonatal mortality and stillbirths: a lives saved tool modelling study. the lancet global health, 9(1), e24–e32. https://doi.org/10.1016/s2214-109x(20)303971/attachment/ce32c3e6-320e-4824-b04392bdfe03f3a6/mmc1.pdf our world in data. (2021). mental health. https://ourworldindata.org/mental-health phumzile mlambo-ngcuka. (2020). violence against women and girls: the shadow pandemic | un women. un women. https://www.unwomen.org/en/news/stories/2020/4 /statement-ed-phumzile-violence-against-womenduring-pandemic pollard, m. s., tucker, j. s., & green, h. d. (2020). changes in adult alcohol use and consequences during the covid-19 pandemic in the us. jama network open, 3(9), e2022942–e2022942. https://doi.org/10.1001/jamanetworkopen.2020. 22942 rhona scullion. (2017). period poverty is a reality for millions of women. passblue. https://passblueun.medium.com/period-poverty-is-a-reality-formillions-of-women-c4d3ab3d6bad ryan van lieshout. (2020). managing postpartum depression: new moms isolated by coronavirus https://iasp.info/wp-content/uploads/wspd-2020-impact-report.pdf https://iasp.info/wp-content/uploads/wspd-2020-impact-report.pdf https://www.mhinnovation.net/innovations/thinking-healthy-programme https://www.mhinnovation.net/innovations/thinking-healthy-programme https://nedic.ca/about/ ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 96 pandemic. healthy debate. https://healthydebate.ca/2020/04/topic/postpartum -depression-coronavirus/ sakowicz, a., imeroni, s., matovina, c., daiter, m., grobman, w. a., & miller, e. s. (2021). 590 postpartum depression screening during the covid19 pandemic. american journal of obstetrics and gynecology, 224(2), s371. https://doi.org/10.1016/j.ajog.2020.12.611 ssantomauro, d. f., melen, s., mitchison, d., vos, t., whiteford, h., & ferrari, a. j. (2021). the hidden burden of eating disorders: an extension of estimates from the global burden of disease study 2019. the lancet psychiatry, 8(4), 320–328. https://doi.org/10.1016/s2215-0366(21)00040-7 shorey, s., chee, c. y. i., ng, e. d., chan, y. h., tam, w. w. s., & chong, y. s. (2018). prevalence and incidence of postpartum depression among healthy mothers: a systematic review and meta-analysis. journal of psychiatric research, 104, 235–248. https://doi.org/10.1016/j.jpsychires.2018.08.001 tai kuncio. (2018). pilot study findings on the provision of hygiene kits with reusable sanitary pads. the un refugee agency (unhcr). https://reliefweb.int/sites/reliefweb.int/files/resour ces/69059.pdf team, c. c.-19 r., team, c. c.-19 r., team, c. c.-19 r., burrer, s. l., perio, m. a. de, hughes, m. m., kuhar, d. t., luckhaupt, s. e., mcdaniel, c. j., porter, r. m., silk, b., stuckey, m. j., & walters, m. (2020). characteristics of health care personnel with covid19 — united states, february 12–april 9, 2020. morbidity and mortality weekly report, 69(15), 477. https://doi.org/10.15585/mmwr.mm6915e6 technology safety organization. (2021). technology safety. https://www.techsafety.org/blog/?category=safety+ net+news the american heart association. (2021). go red for women | the american heart association’s signature women’s initiative. https://www.goredforwomen.org/en the centre for addiction and mental health. (2020). suicide prevention: a review and policy recommendations. https://www.camh.ca//media/files/pdfs---public-policysubmissions/suicide-prevention-review-and-policyrecommendationspdf.pdf?la=en&hash=a43e96fbfefdec87f40eb0e20 3d2a605323407e0 the dove self-esteem project. (2016). our mission. https://www.dove.com/ca/en/dove-self-esteemproject/our-mission.html the generation equality forum. (2021). action coalitions: a global acceleration plan for gender equality. the george institute for global health. (2021). the ncd lab on women and girls. https://www.georgeinstitute.org/the-ncd-lab-onwomen-and-girls the lancet editorial board. (2020, march 14). eating disorders: innovation and progress urgently needed [editorial]. the lancet, 395(10227), p. 840. https://doi.org/10.1016/s0140-6736(20)30573-0 the national eating disorders association (neda). (2021). eating disorder statistics & research. https://www.nationaleatingdisorders.org/statisticsresearch-eating-disorders the project heal organization. (2020). our mission. https://www.theprojectheal.org/our-mission the united states agency for international development (usaid), the kiawah trust, & dasra. (2014). spot on! improving menstrual health and hygiene in india. retrieved november 19, 2021, from www.dasra.org the water supply and sanitation collaborative council (wsscc). (2020). women’s rights are human rights. https://www.wsscc.org/media/newsstories/womens-rights-are-human-rights-period the world bank. (2020). women, business and the law 2020. https://doi.org/10.1596/978-1-4648-1532-4 the world bank. (2021a). labor force participation rate, female (% of female population ages 15+) (modeled ilo estimate) | data. https://data.worldbank.org/indicator/sl.tlf.cact.f e.zs the world bank. (2021b). mental health: lessons learned in 2020 for 2021 and forward. https://blogs.worldbank.org/health/mental-healthlessons-learned-2020-2021-and-forward trevillion, k., oram, s., feder, g., & howard, l. m. (2012). experiences of domestic violence and mental disorders: a systematic review and meta-analysis. plos one, 7(12), e51740. https://doi.org/10.1371/journal.pone.0051740 udo, t., bitley, s., & grilo, c. m. (2019). suicide attempts in us adults with lifetime dsm-5 eating disorders. bmc medicine, 17(1), 1–13. https://doi.org/10.1186/s12916-019-13523/tables/5 uun commission on the status of women. (2002). agreed conclusions on eradicating poverty, including through the empowerment of women throughout their life https://doi.org/10.1186/s12916-019-1352-3/tables/5 https://doi.org/10.1186/s12916-019-1352-3/tables/5 ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 97 cycle, in a globalising world. https://www.un.org/womenwatch/daw/csw/csw46/ conclusionsii.pdf un desa statistics. (2020). women’s decision-making on and equal access to sexual and reproductive health [unfpa]. https://undesa.maps.arcgis.com/apps/mapjournal/i ndex.html?appid=9e5c189d5ee042c1b7f051ece189f 018 un desa statistics division. (2020a). menstrual health and hygiene. health. https://undesa.maps.arcgis.com/apps/mapjournal/i ndex.html?appid=d89286ad65354bbb8512329412da d320 un desa statistics division. (2020b). women in managerial positions. world’s women 2020. https://worlds-women-2020-dataundesa.hub.arcgis.com/apps/0d1ff2530f17451bb84 37c6ea584282e/explore un women. (2013). economic empowerment of women in brief. what’s the issue? https://www.unwomen.org/sites/default/files/head quarters/attachments/sections/library/publications /2013/12/un%20women_ee-thematic-brief_usweb%20pdf.pdf un women. (2018). facts and figures: economic empowerment | un women. https://www.unwomen.org/en/what-wedo/economic-empowerment/facts-and-figures un women. (2019a). respect women: preventing violence against women | un women. https://www.unwomen.org/en/digitallibrary/publications/2019/05/respect-womenpreventing-violence-against-women un women. (2019b). safe cities and safe public spaces for women and girls global flagship initiative: international compendium of practices safe cities and safe public spaces un women global flagship programme. https://www.unwomen.org/sites/default/files/head quarters/attachments/sections/library/publications /2019/safe-cities-and-safe-public-spacescompendium-of-practices-en.pdf un women. (2020a). covid-19 and ending violence against women and girls. https://www.unwomen.org/sites/default/files/head quarters/attachments/sections/library/publications /2020/issue-brief-covid-19-and-ending-violenceagainst-women-and-girls-en.pdf un women. (2020b). covid-19 and ensuring safe cities and safe public spaces for women and girls. https://www.unwomen.org/sites/default/files/head quarters/attachments/sections/library/publications /2020/brief-covid-19-and-ensuring-safe-cities-andsafe-public-spaces-for-women-and-girls-en.pdf un women. (2020c). covid-19 and essential services provision for survivors of violence against women and girls. https://www.unwomen.org/sites/default/files/head quarters/attachments/sections/library/publications /2020/brief-covid-19-and-essential-servicesprovision-for-survivors-of-violence-against-womenand-girls-en.pdf un women. (2020d). looking back and pushing forward: the global fight to end fgm. https://www.unwomen.org/en/news/stories/2020/1 /feature-global-fight-to-end-fgm un women. (2020e). online and ict * facilitated violence against women and girls during covid-19. https://www.unwomen.org/sites/default/files/head quarters/attachments/sections/library/publications /2020/brief-online-and-ict-facilitated-violenceagainst-women-and-girls-during-covid-19-en.pdf un women. (2020f). the shadow pandemic: online and ict*facilitated violence against women and girls during covid-19. https://www.unwomen.org/sites/default/files/head quarters/attachments/sections/library/publications /2020/brief-online-and-ict-facilitated-violenceagainst-women-and-girls-during-covid-19infographic-en.pdf un women. (2021a). facts and figures: ending violence against women. what we do. https://www.unwomen.org/en/what-we-do/endingviolence-against-women/facts-and-figures un women. (2021b). report on the un women global response to covid-19. https://www.unwomen.org/en/digitallibrary/publications/2021/02/report-on-the-unwomen-global-response-to-covid-19 un women. (2021c). the spotlight initiative: what we do: ending violence against women and girls. https://www.unwomen.org/en/what-we-do/endingviolence-against-women/spotlight-initiative unesco. (2019). her education, our future: unesco fasttracking girls’ and women’s education. https://en.unesco.org/news/her-education-ourfuture-unesco-fast-tracking-girls-and-womenseducation unesco. (2021a). 12 years of education for every girl. https://unesdoc.unesco.org/ark:/48223/pf00003779 97/pdf/377997eng.pdf.multi https://undesa.maps.arcgis.com/apps/mapjournal/index.html?appid=d89286ad65354bbb8512329412dad320 https://undesa.maps.arcgis.com/apps/mapjournal/index.html?appid=d89286ad65354bbb8512329412dad320 https://undesa.maps.arcgis.com/apps/mapjournal/index.html?appid=d89286ad65354bbb8512329412dad320 https://worlds-women-2020-data-undesa.hub.arcgis.com/apps/0d1ff2530f17451bb8437c6ea584282e/explore https://worlds-women-2020-data-undesa.hub.arcgis.com/apps/0d1ff2530f17451bb8437c6ea584282e/explore https://worlds-women-2020-data-undesa.hub.arcgis.com/apps/0d1ff2530f17451bb8437c6ea584282e/explore https://www.unwomen.org/sites/default/files/headquarters/attachments/sections/library/publications/2020/brief-online-and-ict-facilitated-violence-against-women-and-girls-during-covid-19-infographic-en.pdf https://www.unwomen.org/sites/default/files/headquarters/attachments/sections/library/publications/2020/brief-online-and-ict-facilitated-violence-against-women-and-girls-during-covid-19-infographic-en.pdf https://www.unwomen.org/sites/default/files/headquarters/attachments/sections/library/publications/2020/brief-online-and-ict-facilitated-violence-against-women-and-girls-during-covid-19-infographic-en.pdf https://www.unwomen.org/sites/default/files/headquarters/attachments/sections/library/publications/2020/brief-online-and-ict-facilitated-violence-against-women-and-girls-during-covid-19-infographic-en.pdf https://www.unwomen.org/sites/default/files/headquarters/attachments/sections/library/publications/2020/brief-online-and-ict-facilitated-violence-against-women-and-girls-during-covid-19-infographic-en.pdf ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 98 unesco. (2021b). education and gender equality. https://en.unesco.org/themes/women-s-and-girlseducation unesco. (2021c). girls’ education and covid-19: new factsheet shows increased inequalities for the education of adolescent girls. https://en.unesco.org/news/girls-education-andcovid-19-new-factsheet-shows-increasedinequalities-education-adolescent unesco. (2021d). keeping girls in the picture. https://en.unesco.org/covid19/educationresponse/g irlseducation unesco, alessandro bello, tonya blowers, susan schneegans, & tiffany straza. (2021). to be smart, the digital revolution will need to be inclusive: excerpt from the unesco science report. https://unesdoc.unesco.org/ark:/48223/pf00003754 29 unesco, & global education coalition. (2021). supporting learning recovery one year into covid-19: the global education coalition in action. https://unesdoc.unesco.org/ark:/48223/pf00003760 61 unfpa. (2019a). annual report 2019 | united nations population fund. https://www.unfpa.org/annualreport-2019 unfpa. (2019b). enabling environments for eliminating female genital mutilation, policy brief: towards a comprehensive and multisectoral approach. https://www.unfpa.org/sites/default/files/pubpdf/policy_brief_enabling_environments_for_eliminating_female_g enital_mutilation.pdf unfpa. (2019c). the maternal and newborn health thematic fund annual report.https://www.unfpa.org/sites/default/files/pu b-pdf/mhtf_annual_report_2019_19-online_1.pdf unfpa. (2020a). annual report 2020: united nations population fund. https://www.unfpa.org/annualreport unfpa. (2020b). family planning | united nations population fund. https://www.unfpa.org/familyplanning unfpa. (2020c). measuring effectiveness of female genital mutilation elimination: a compendium of indicators unfpa-unicef joint programme on the elimination of female genital mutilation: accelerating change. https://www.unfpa.org/sites/default/files/pubpdf/026_uf_compendiumofindicatorsfgm_21online_f.pdf unfpa. (2020d). unfpa global results | united nations population fund. https://www.unfpa.org/data/results unfpa. (2021a). child marriage | united nations population fund. https://www.unfpa.org/childmarriage#readmore-expand unfpa. (2021b). female genital mutilation. https://www.unfpa.org/female-genital-mutilation unfpa. (2021c). unfpa-unicef joint programme on female genital mutilation | united nations population fund. https://www.unfpa.org/unfpa-unicef-jointprogramme-female-genital-mutilation unicef. (2019). guidance on menstrual health and hygiene. unicef programme division/wash, new york, usa, first edition. https://www.unicef.org/media/91341/file/unicefguidance-menstrual-health-hygiene-2019.pdf unicef. (2020a). gender and education unicef data. https://data.unicef.org/topic/gender/genderdisparities-in-education/ unicef. (2020b). unfpa-unicef global programme to end child marriage. sierra leone country profile. https://www.unicef.org/media/88841/file/childmarriage-sierra-leone-profile-2019.pdf unicef. (2020c). unicef and unfpa renew multi-country initiative to protect millions of girls from child marriage. https://www.unicef.org/pressreleases/unicef-and-unfpa-renew-multi-countryinitiative-protect-millions-girls-child unicef. (2021). child marriage. https://data.unicef.org/topic/child-protection/childmarriage/ united nations department of economic and social affairs. (2020). the impact of covid-19 on women. the year 2020, marking the twenty-fifth anniversary of the beijing platform. https://www.un.org/sexualviolenceinconflict/wpcontent/uploads/2020/06/report/policy-brief-theimpact-of-covid-19-on-women/policy-brief-theimpact-of-covid-19-on-women-en-1.pdf united nations department of economic and social affairs (desa). (2021). the 17 goals: sustainable development. https://sdgs.un.org/goals united nations development programme (undp). (2020). impact of covid-19 on the sustainable development goals: pursuing the sustainable development goals (sdgs) in a world reshaped by covid19.undp.org/content/rbas/en/home/library/crisisresponse0/pursuing-the-sustainable-developmentgoals--sdgs-in-a-world-resh.html ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 99 united nations children’s fund (unicef). (2021). unfpaunicef joint programme on the elimination of female genital mutilation | unicef. https://www.unicef.org/protection/unfpa-unicefjoint-programme-eliminating-fgm united nations office on drugs and crime (unodc). (2019). global study on homicide: gender-related killing of women and girls. https://www.unodc.org/documents/data-andanalysis/gsh/booklet_5.pdf united nations population fund (unfpa). (2021). global shortage of 900,000 midwives threatens women’s lives and health, new report shows | united nations population fund. https://www.unfpa.org/news/global-shortage900000-midwives-threatens-womens-lives-andhealth-new-report-shows united nations sustainable development group (unsdg). (2021). 2030 agenda universal values. https://unsdg.un.org/2030-agenda/universal-values united nations (un). (2020). quality education: why it matters. https://www.un.org/sustainabledevelopment/wpcontent/uploads/2017/02/4_why-it-matters2020.pdf united nations women organization (un women). (2020). the shadow pandemic: violence against women and girls and covid-19. https://www.unwomen.org/en/news/stories/2020/4 /statement-ed-phumzile-violence-against-womenduring-pandemic wash alliance international. (2021). wash sdg programme – wash alliance international. wash alliance international. https://washalliance.org/washsdg-programme/ wateraid. (2018). better toilets, accurate information about periods crucial to keeping girls in school: wateraid. https://www.wateraid.org/uk/media/better-toiletsaccurate-information-about-periods-crucial-tokeeping-girls-in-school-wateraid who. (2015). strategies toward ending preventable maternal mortality (epmm). https://apps.who.int/iris/bitstream/handle/10665/1 53544/9789241508483_eng.pdf?sequence=1&isallo wed=y who. (2017). mental health atlas 2017. https://www.who.int/publications/i/item/97892415 14019 who. (2018). chronic illness: a deadly risk. http://www.who.int/mental_health/suicideprevention who. (2019a). maternal mortality. https://www.who.int/news-room/factsheets/detail/maternal-mortality who. (2019b). preventing suicide: a resource for pesticide registrars and regulators. https://www.who.int/publications/i/item/97892415 16389 who. (2019c). w o m e n. https://www.unodc.org/documents/justice-andprison-reform/who-rhr-18.19-eng.pdf who. (2019d). who special initiative for mental health (20192023).https://apps.who.int/iris/bitstream/handle/10 665/310981/who-msd-19.1eng.pdf?sequence=1&isallowed=y who. (2020a). adolescent pregnancy. https://www.who.int/news-room/factsheets/detail/adolescent-pregnancy who. (2020b). ending preventable maternal mortality online consultation for coverage targets for ending preventable maternal mortality. https://www.who.int/news/item/03-09-2020ending-preventable-maternal-mortality-onlineconsultation-for-coverage-targets-for-endingpreventable-maternal-mortality who. (2020c). enhancing mental health pre-service training with the mhgap intervention guide: experiences and lessons learned. https://www.who.int/publications/i/item/97892400 07666 who. (2020d). global strategy to accelerate the elimination of cervical cancer as a public health problem. https://www.who.int/publications/i/item/97892400 14107 who. (2020e). global strategy to accelerate the elimination of cervical cancer as a public health problem and its associated goals and targets for the period 2020 – 2030. united nations general assembly, 2(1), 1–3. who. (2020f). mental health and substance use. https://www.who.int/teams/mental-health-andsubstance-use/treatment-care/mental-health-gapaction-programme who. (2020g). mental health and substance use. https://www.who.int/teams/mental-health-andsubstance-use/promotion-prevention/gender-andwomen-s-mental-health ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 100 who. (2021a). community-based mental health services using a rights-based approach. https://www.who.int/news-room/featurestories/detail/community-based-mental-healthservices-using-a-rights-based-approach who. (2021b). live life: an implementation guide for suicide prevention in countries. https://apps.who.int/iris/handle/10665/341726 who. (2021c).mental health. https://www.who.int/health-topics/mentalhealth#tab=tab_2 who. (2021d). mental health. https://www.who.int/health-topics/mentalhealth#tab=tab_1 who. (2021e). new global breast cancer initiative highlights renewed commitment to improve survival. https://www.who.int/news/item/08-03-2021-newglobal-breast-cancer-initiative-highlights-renewedcommitment-to-improve-survival who. (2021f). one in 100 deaths is by suicide. https://www.who.int/news/item/17-06-2021-onein-100-deaths-is-by-suicide who. (2021g).scaling up mental health care. https://www.who.int/activities/scaling-up-mentalhealth-care who. (2021h). social determinants of health. https://www.who.int/health-topics/socialdeterminants-of-health#tab=tab_1 who. (2021i). violence against women. https://www.who.int/news-room/factsheets/detail/violence-against-women who. (2021j). who menu of cost-effective interventions for mental health. https://apps.who.int/iris/bitstream/handle/10665/3 43074/9789240031081eng.pdf?sequence=1&isallowed=y who. (2021k, november). preventing unsafe abortion. https://www.who.int/news-room/factsheets/detail/preventing-unsafe-abortion women and ncds taskforce. (2021). women and ncds taskforce – medium. https://medium.com/@womenandncds world eating disorders day organization. (2021). world eating disorders action day. https://www.worldeatingdisordersday.org/ world economic forum. (2019a). an economist explains why women are paid less. https://www.weforum.org/agenda/2019/03/aneconomist-explains-why-women-get-paid-less/ world economic forum. (2019b). insight report global gender gap report 2020 terms of use and disclaimer. world economic forum, geneva switzerland. https://www3.weforum.org/docs/wef_gggr_2020. pdf world economic forum. (2019c). there are 3 barriers blocking good menstrual hygiene for all women. here’s how we overcome them | world economic forum. https://www.weforum.org/agenda/2019/11/menstr uation-in-different-cultures-period-taboos/ world economic forum. (2020). global gender gap report 2020. https://www.weforum.org/reports/gendergap-2020-report-100-years-pay-equality world health organization. (2016). who, global health estimates 2016: deaths by cause, age, sex by country and by region, 2000–2016. 2016, world health organization: geneva. world health organization. (2019a). breaking barriers towards more gender-responsive and equitable health systems advance copy. universal health coverage report 2019. https://www.who.int/healthinfo/universal_health_c overage/report/gender_gmr_2019.pdf?ua=1 world health organization. (2019b). maternal mortality. https://www.who.int/news-room/factsheets/detail/maternal-mortality world health organization. (2019c). trends in maternal mortality 2000 to 2017 estimates by who, unicef, unfpa, world bank group and the united nations population division. world health organization.https://www.unfpa.org/sites/default/fi les/pub-pdf/maternal_mortality_report.pdf world health organization. (2021a). births attended by skilled health personnel (%). https://www.who.int/data/gho/data/indicators/indi cator-details/gho/births-attended-by-skilled-healthpersonnel-(-) world health organization. (2021b). constitution of the world health organization. https://www.who.int/about/governance/constitutio n world health organization. (2021c). maternal and reproductive health. https://www.who.int/data/gho/data/themes/mater nal-and-reproductive-health world health organization, london school of hygiene and tropical medicine, & south african medical research council. (2013). global and regional estimates of violence against women: prevalence and health effects of intimate partner violence and non-partner sexual violence. https://apps.who.int/iris/handle/10665/341726 https://www.who.int/data/gho/data/themes/maternal-and-reproductive-health https://www.who.int/data/gho/data/themes/maternal-and-reproductive-health ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 101 grhttps://www.who.int/publications/i/item/978924 1564625 yan, h., ding, y., & guo, w. (2020). mental health of pregnant and postpartum women during the coronavirus disease 2019 pandemic: a systematic review and meta-analysis. frontiers in psychology, 11, 3324. https://doi.org/10.3389/fpsyg.2020.617001/bibtex . ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 102 table 1. women’s physical well-being challenges and best practices with impacts maternal mortality challenges 1. 2019 unfpa report indicated that maternal mortality ratio (mmr) was • 211 per 100,000 live births (unfpa, 2019a) 2. in 2017, who reported deaths due to preventable causes related to maternal mortality toll: • 295,000 women worldwide • two-thirds (196,000) of them occurred in subsaharan africa (who, 2019a) 3. a woman’s lifetime risk of maternal death is: • 1 in 5400 in hics • 1 in 45 in lics (who, 2019a) 4. birth attendance by skilled health personnel varied from: • less than 50% in lics and lmics • more than 90% in hics (who, 2019a) 5. who data indicated that women’s social independence is related to antenatal care coverage (have ≥ 4 visits): • 73% of women with higher social independence • 44% of women with low social independence (world health organization, 2019a, p.7) 6. worldwide, only 41% of women were provided with maternity benefits (international labour organization (ilo), 2019, p. 54) best practices 1. the ending preventable maternal mortality (epmm) is a collaborative global framework that has five main strategic objectives summarized in: • address all causes of maternal mortality, reproductive and maternal morbidities, and all inequities in the access • ensure universal health coverage (uhc) and accountability to improve the quality of sexual, reproductive, maternal, and newborn health care • strengthen health systems (who, 2015, p.15) 2. maternal and newborn health thematic fund (mhtf) is unfpa’s program that supports 32 countries in four key thematic areas: • midwifery, emergency obstetric and newborn care (emonc) • maternal and perinatal death surveillance and response (mpdsr) • obstetric fistula (unfpa, 2019c, p.8) 3. emonc launched an innovative approach to key obstetric emergencies training, providing both: • mobile learning • e-learning (unfpa, 2019c, p.12) impact ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 103 1. out of 155 reporting countries, most healthcare services are free of charge: • 97% for maternal and child immunizations • 82% hiv testing and treatment • 80% antenatal care • 71% normal deliveries • 70% family planning • 68% cesarean sections • 65% contraceptives • 33% infertility management (world health organization, 2019a, p.11) 2. since the implementation of the mhtf in 2008: • 150,000 midwives underwent standardized training • 26 million safe births managed annually • 750 midwifery schools were provided with all learning resources • over 12,000 midwifery tutors participated in certification upgrades (unfpa, 2019c, p.12) 3. the mhtf reported that as of 2019 in benin and guinea, more than half of the population now has access to emonc facilities within ≤ 2 hours of travel distance (unfpa, 2019c, p.15) 4. between 2000 and 2017, the average rate of reduction in global maternal mortality per year was 2.9% (who, 2020b) female genital mutilation (fgm) challenges 1. globally, statistics showed that: • 200 million girls and women experienced some form of fgm during their life • almost 3.9 million girls underwent fgm annually • 4.6 million girls are predicted to be at risk for fgm in 2030 and onward • 68 million girls are predicted to be mutilated during the period between 2015 to 2030 • almost 20% of fgm procedures among girls were done by a trained medical professional (unfpa, 2021b) • 22% of countries with data on fgm do not ban or legally criminalize it • 16% of those countries did not develop any national strategy or plan to end fgm (unfpa, 2019b, p.5, p.6) • about 600,000 women living in europe underwent fgm outside the eu, and a further 180,000 girls are at risk in 13 european countries, although this procedure is illegal (news european parliament, 2020) • 2 million more cases of fgm are expected to occur during the next 10 years due to the disruption of prevention programs caused by covid (unfpa, 2019b, p.12) best practices 1. 59 countries have legislation to ban fgm, including 26 of the 29 african countries where fgm is prevalent (un women, 2020d) 2. the unfpa-unicef joint program to eliminate female genital mutilation (fgm) is the largest global program: • implemented in 17 countries, in partnership with governments, civil societies, social movements, religious leaders, and communities to provide culturally sensitive interventions (united nations children’s fund (unicef), 2021) impact 1. the unfpa-unicef joint program to eliminate fgm started in 2008 and resulted in: • 31.5 million people in over 21,700 communities have declared the abandonment and disappearance of fgm (unfpa, 2021c) ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 104 • 3.3 million women and girls have benefited from fgm-related prevention, protection, and care services (unfpa, 2020c, p.9) • 350,630 girls have been protected from fgm during the 2018-2020 period (unfpa, 2020d) violence against women challenges 1. 1 in 3 women has experienced physical and/or sexual violence in their lifetime, mainly by an intimate partner (who, 2021i) 2. the prevalence of lifetime intimate partner violence ranges from • 20% in the western pacific • 33% in the who african and south-east asian regions (who, 2021i) • 55-95% of women survivors of violence do not disclose or seek any type of services (who, 2019c, p.5) • 137 women are murdered daily by a family member globally (united nations office on drugs and crime (unodc), 2019, p.13) • 38% of murdered women are killed by intimate partners worldwide (who, 2021i) 3. statistics showed that women who experienced violence are: • more than twice as likely to undergo induced abortion • > 1.5 times likely to be infected with syphilis, chlamydia, or gonorrhea • 1.5 times more likely to contract hiv • 16% more likely to deliver a low birth-weight newborn (world health organization et al., 2013, p.1) • 43% more likely to experience preterm births (world health organization, 2019a, p.20) 4. during the covid-19 lockdown, a significant increase in vawg has been reported with: • 300% increase in helpline calls in vancouver (un women, 2020b, p.2), 33% in singapore, and 25% in argentina (un women, 2020a, p.2) • more than three-fold increase in the number of visits to the domestic violence resource website over a period of 3 weeks in new york (un women, 2020b, p.2) 5. providing services remotely is challenging for frontline healthcare staff: • 40 % of them have reported increased demand for help by survivors • 70 % have reported an increase in complexity of cases in new south wales, australia (united nations department of economic and social affairs, 2020, p.18) • 67% of frontline healthcare staff acknowledged it barriers • 42% of them express concern about women’s safety while using phone or online services in the uk (un women, 2020c, p.4) best practices 1. un women’s global flagship initiative “safe cities and safe public spaces for women and girls” is the first global program implemented in 2011 to prevent and respond to sexual violence against women and girls (svaw) in public spaces (un women, 2019b, p.22) 2. the european union (eu) and the un collaboratively launched in 2017 the spotlight initiative, a eur 500 million program that deploys targeted, large-scale investments to protect the rights of women in africa, • relationship strengthening • empowerment of women (economic and social) • services ensured (legal, police, health, social) • poverty reduced strategies • environments made safe: (schools, public spaces, and work) • child and adolescent abuse prevented ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 105 asia, the caribbean, latin america, and the pacific (un women, 2021c) 3. who and un women, with endorsement from 12 other un and bilateral agencies, published respect women in 2019, which aimed at policy makers to prevent violence against women • transformed attitudes, beliefs, and norms: (un women, 2019a) 4. during the covid-19 pandemic, certain interventions have been taken: • covid-19 global gender response tracker, focusing on best practices and gaps in the covid-19 policy response (un women, 2021b) • in canada, the government assigned cad 50 million to maintain shelters for women who experienced sexual and other forms of gender-based violence as a part of the covid-19 response package • in australia, aud 150 million was designated for family violence response (united nations department of economic and social affairs, 2020) impact 1. worldwide, statistics shows: • 155 countries have passed laws on domestic violence, • 140 have legislation on sexual harassment in the workplace (un women, 2021a) 2. out of 144 countries, a majority implemented postrape services: • 90% of them provided first-line support • 94.6% of them offered post-exposure prophylaxis • 88.2% of them provided emergency contraceptives • 48.2% of them gave safe abortion services (world health organization, 2019a, p.20) 3. in france, during the covid-19 pandemic, the initiative to increase the shelter for victims of abuse included: • housing pop-ups at grocery stores • 20,000 hotel room nights (united nations department of economic and social affairs, 2020, p.18) 4. according to the unfpa report: • 930,351 vawg survivors received required services in 2020 (unfpa, 2020a) non-communicable diseases (ncds) challenges ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 106 1. more than 2/3 (73%) of all deaths among women are caused by ncds, where cvds and cancer constituted 45% and 20%, respectively (world health organization, 2019a, p.15) • women’s deaths from cvds are 1.7 times higher in lmics compared to hics (world health organization, 2016) • almost 90% of 311,000 cervical cancer deaths globally in 2018 occurred in lmics(who, 2020d, p.12) • 70% of cervical cancer worldwide is attributed to hpv types 16 and 18 (who, 2020d, p.13) 2. in 2020, the availability of publicly funded cancer care services: • around 30% in lics compared to more than 90% in hics (who, 2020d, p.14) 3. 5-year breast cancer survival rate: • 90% in north america • 60% in lics • this difference is caused by the lower accessibility of diagnostic procedures and treatment. (world health organization, 2019a, p.7) 5. acute coronary syndrome (acs): • 41% of women with acs have delayed hospital visits (after 12 hours from the onset of the symptoms) compared to 37% of men • 5% of acs among women were initially misdiagnosed compared to 3% of acs among men (european society of cardiology (esc), 2021) 6. in the us, 13% of females under the age of 65 do not have health insurance (2020 data) (cohen et al., 2021, p.3) best practices 1. the ncd lab on women and girls has been recently launched under who guidance in 2021 and targets: • ncds • mental health • gender inequalities (the george institute for global health, 2021) 2. the “90-70-90” target of the who global strategy to eliminate cervical cancer and save 62 million lives by 2030: • 90% of girls by the age of 15 to be fully vaccinated with hpv vaccine • 70% of women screened at the age of 35 and repeated the test at 45 years • 90% of women diagnosed with cervical disease are treated (who, 2020e) 3. go red for women-women’s heart health awareness global program. (the american heart association, 2021) 4. in 2021, the global breast cancer initiative was launched to reduce breast cancer mortality by 2.5% annually by 2040, thus saving about 2.5 million lives (who, 2021e). it is based on 3 main pillars: • health promotion and early detection • a timely breast cancer diagnosis • comprehensive breast cancer management (anderson et al., 2021) impact 1. cervical cancer • 34% of 155 reporting countries have human papillomavirus (hpv) vaccinations free of charge. (world health organization, 2019a, p.11) • ¼ of low-income countries included the hpv vaccine into their national immunization plan. (who, 2020d, p.14) • 100 million girls had at least one dose of the hpv vaccine during period from 2006 – 2017: o 95% of girls were in hics (who, 2020d, p.14) 2. breast cancer: • 40% of breast cancer mortality decreased in hics between 1989 -2017 • >20% breast cancer mortality lowered by population-wide mammographic ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 107 screening, where at least 60% of invasive breast cancers are diagnosed at stage i or ii (anderson et al., 2021) ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 108 table 2. women’s mental well-being challenges and best practices with impacts mental illness challenges 1. globally, > 80% of people with mental health conditions lack standardized and affordable mental health care(who, 2019d, p.1) 2. individuals living with mental health conditions are more likely to have physical illnesses and die prematurely by 10-20 years (who, 2019d, p.2) 3. who mental health atlas 2017 statistics showed that there are: • 11.9 vs. 0.1 psychiatrists per 100,000 population in hics vs. lics countries, respectively • 23.5 vs. 0.3 mental health care nurses per 100,000 population in hics vs. lics (who, 2017, p.32) 4. every 40 sec a person loses their life due to suicide (who, 2018), with > 90% of them suffering from mental illness (bertolote & fleischmann, 2002) best practices 1. in 2019, who universal health coverage for mental health (2019-2023) was launched, aiming to provide more than 100 million individuals with quality and affordable mental health care in 12 priority countries (who, 2021d) 2. in 2008, who mental health gap action programme (mhgap) initiative was launched in over 100 countries to prevent suicide and promote mental health well-being (who, 2021g) 3. who initiated live life program to tackle the suicide problem through: • restricting access to means of suicide • media for responsible reporting • life skills development among young adults early identification (who, 2018) impact 1. 90% of all institutions in rural areas of liberia implemented mental health gap action programme intervention guide (mhgap-ig) pre-service education and trained a total of 1,251 students, which accounted for 16% of all nursing, midwifery staff, and physician assistants (who, 2020c, p.5) 2. means of suicide restriction have proven to cause significant suicide reduction: • 40% reduction in suicides in estonia after implementing the alcohol restriction policies (canadian centre on substance abuse, 2016, p.6) • 70% and 65% decrease in suicide after banning highly harmful pesticides products in sri lanka and bangladesh respectively (who, 2019b, p.33, p.34) 3. > 1% of suicides can be averted by responsible media reporting strategies (the centre for addiction and mental health, 2020, p.9) mental illness related to physical abuse challenges 1. violence prevalence rate against women in their lifetime accounts for 16% to 50% (who, 2020g) 2. women exposed to intimate partner and sexual violence compared to other women are: • 7 times more likely to have post-traumatic stress disorders (ptsds) (trevillion et al., 2012) • 1 in 5 women in canada suffered from online harassment in 2018 • 1 in 5 women aged 18-19 years reported online sexual harassment in the u.s. (un women, 2020e, p.2) ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 109 • 4.5 times more likely to attempt suicide (world health organization, 2019a, p.20) • 2 times more likely to suffer from depression and disorders related to alcohol abuse (world health organization, 2019a, p.20) 3. globally, 85% women experienced some form of online violence: where harassment accounts almost 40%(the generation equality forum, 2021, p.42) 4. cyberviolence includes a variety of forms, such as physical threats, sexual harassment, stalking, zoom bombing, and sex trolling (un women, 2020f): • 1 in 10 women in the european union has been exposed to cyber-harassment since the age of 15 • 4 out of 10 female college students in pakistan experienced cyber-harassment in 2016 (un women, 2020f) 5. online and information communication technology (ict)-facilitated violence has increased during the covid-19 pandemic with: • 50% increase in online bullying and violence in australia in march 2020 • 200% increase in government helpline calls in the united kingdom for adults suffering intimate image abuse during a one-week period in march 2020 (un women, 2020f) best practices 1. “access now digital security helpline” provides • digital security practices • rapid-response emergency assistance for women already under attack • digital rights information during the humanitarian crisis (un women, 2020e, p.5) 2. the “net tech project” at the national network to end domestic violence (nnedv) addresses technology, privacy, and safety to stop intimate partner violence, sexual assault, and violence against women during covid-19 (un women, 2020e, p.5) 3. in the us, “the shield act” is an amendment to “the violence against women reauthorization act” of 2021, focusing on protection against an egregious form of cyber sexual abuse that disadvantageously influences women and girls (cyber civil rights initiative, 2021) impact 1. > half a million gender-based violence survivors were provided with mental health and psychosocial support according to unfpa report in 2020 (unfpa, 2020a) 2. around 12,000 advocates, law enforcement, legal professionals, and other service providers were trained in one year by the technology safety organization along with the “net tech project” to tackle online harassment (technology safety organization, 2021) 3. >235 million people accessed world mental health day online awareness activities based on the international association for suicide prevention (iasp) report (international association for suicide prevention, 2020, p.13) eating disorder (ed) challenges 1. the lifetime ed prevalence is 8.4% for women vs. 2.2% for men, with the highest prevalence of 4.6% in america, 3.5% in asia, 2.2% in europe (galmiche et al., 2019) 2. in 2019, almost 42 million individuals suffered from eating disorders globally, with: • 4.7 million disability-adjusted life years (dalys) among women vs. 2 million dalys among men were due to anorexia nervosa and bulimia due to health system barriers(the project heal organization, 2020) 4. a recent national study on more than 36,000 americans reported that attempted suicide prevalence rates were: • 31.4% among bulimia nervosa (bn) patients, • almost 25% among anorexia nervosa (an) patients ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 110 nervosa eating disorders (santomauro et al., 2021) • only about one in five persons with eating disorders consult care providers at the late stage of the disease requiring complex treatment (the lancet editorial board, 2020) • the most affected group was 25–29 years for females and 30–34 years for males (santomauro et al., 2021) 3. 80% out of the 30 million americans suffering from eating disorders did not have access to treatment • 22.9% among binge eating disorder (bed) patients (udo et al., 2019) 5. effect of media: statistics related to more than 10,000 women and girls from 13 countries showed that 90% of them claimed they are risking their health by unhealthy dieting due to unsatisfactory self-body image (the national eating disorders association (neda), 2021) 6. covid-19 effects: • in 2020, eating disorder hospitalization increased by almost 70% in ireland (break binge eating, 2021) best practices 1. there are many media campaigns promoting positive body image, i.e.: • the dove self-esteem project launched in 2004 (the dove self-esteem project, 2016) 2. “the world eating disorders day” is a collaborative annual awareness event led by > 200 organizations from over 50 countries (world eating disorders day organization, 2021) 3. national eating disorder information center (nedic) in canada offers a toll-free helpline and live chat to increase awareness and provide referrals and support. (national eating disorder information centre (nedic), 2021) 4. “the beat” eating disorders organization, established in 1989 in the uk, provides services, such as: • helpline • specialist coaching “bolster” program • training family and healthcare professionals, and others (beat eating disorders organization, 2021a) impact 1. 56% of females claimed to have a better self-image because of body diversity media campaigns (neda, n.d.) 2. 60 million young people were provided with selfesteem education by the dove project (the dove self-esteem project, 2016) 3. the impacts of the nedic initiative are: • 3,500 individuals annually are provided with nedic services, with more than 98% of helpline users are supported and referred within 24 hours • 160,000 professionals have received nedic education since 2004 • > 10,000 students annually reached out by “body pride programming curriculum” starting from 4th grade • > 30,000 middleto high-school students annually participate in “the beyond images and au-delà de l’image” curricula (national eating disorder information centre (nedic), 2021) 4. the coaching specialists support “bolster” program of the beat eating disorder organization reported • 36% reduction in the severity of eating disorders • 50% reduction in the severity of depression among eating disorder patients 5. helpline support service users of the beat eating disorder organization claimed • 67% mental health improvement 6. “structured training raising resilience” program of the beat eating disorder organization indicated • 60% improvement of knowledge of eating disorders (beat eating disorders organization, 2021b) perinatal depression (prenatal and postnatal) challenges https://www.thejournal.ie/eating-disorders-hospital-admissions-ireland-5331990-jan2021/ ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 111 1. the prevalence of prenatal and postnatal depression in lmics is higher compared to hics: • 15% in hics vs. 25% in lmics for prenatal depression • 10% in hics vs 19% in lmics for postnatal depression (fatori et al., 2020) 2. globally, 12% of women suffer from postpartum depression (ppd) (shorey et al., 2018) 3. a literature review in 2020 showed that ppd ranged between 6.1% to 50.3% in africa (atuhaire et al., 2020) 4. globally, 10% of women in the postpartum period claimed to have suicidal ideation (amiri & behnezhad, 2021) 5. during the covid-19 pandemic, an almost double increase in the prevalence of ppd compared to the pre-pandemic era was reported, with: • 28.4% in mexico (chávez-tostado et al., 2020, p.3) • 22% in china (yan et al., 2020) at the same time, mental health screening services for ppd had been significantly decreased: • 40% reduction in the us (sakowicz et al., 2021) best practices 1. the who thinking healthy programme (thp) intervention for perinatal depression incorporating cognitive and behavioral techniques into community health providers’/primary care professionals’ routine practice (mental health innovation network (mhin), 2021) 2. during the covid-19 pandemic, telehealth, and electronic applications for mental health services, primarily depression, has been widely used for counseling, supervision, training, and psychoeducation, such as: • better help, beyond blue in australia (better help organization, 2021; beyond blue, 2021); • mindmum, lifeline4mums in the us and canada (ryan van lieshout, 2020) impact 1. the who thp programme showed significant impact: • > 900 cases of perinatal depression were detected after screening 4000 pregnant women in a rural area of pakistan with a population of 1.2 million • 75% of women with ppd recovered after the intervention, with the annual cost of < us$10 per woman (mental health innovation network (mhin), 2021) 2. impact of innovative interventions during covid19 pandemic: • better help: 2.03 million people were reached, with 70% of depression patients showing improvement (better help organization, 2021) ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 112 table 3: women’s social well-being challenges and best practices with impacts education challenges 1. globally, 2018 reports indicated: ● two-thirds of 773 million illiterate adults are women (united nations (un), 2020, p.2) ● 132 million girls are out of school (unesco, 2019) ● 5.5 million more girls are out-of-school than boys (unicef, 2020a; united nations (un), 2020, p.1) 2. unesco institute for statistics predicted that by 2030, 16 million girls would never be enrolled in school (unesco, 2021b) 3. covid-19 impact, based on 2020 unesco reports: • 11 million girls aged 12-17 in lic and lower-middle-income countries are predicted not to be able to resume school (unesco, 2021c) • only 55% lics compared to 93% hics were able to switch to online learning for primary and secondary education (global education monitoring report team & unesco, 2021, p.2) • only 15% of women vs. 28% of men have access to the internet (global education monitoring report team & unesco, 2021, p.2) • females are 8% less likely than males to have a cell phone and 20% less likely to access the internet on their phone, which negatively impacts their chance of engaging in online learning (global education monitoring report team & unesco, 2021, p.2) best practices 1. the “convention against discrimination in education” was adopted in 1960 to “advance the ideal of equality of educational opportunities without regard to race, sex or any distinctions, economic or social.” it was ratified by only 106 countries (canada’s human right commitments, 2020, p.1) 2. unfpa (2018-2020) 19,861 communities built the platforms to advocate and abolish discriminatory gender and socio-cultural norms that negatively impact women and girls (unfpa, 2020d) 3. the global education coalition was established by unesco during the pandemic to ensure the right to education: • 175 members from 112 countries • 5 global surveys on education responses to covid-19 • 3 large campaigns (save our future, teacher protection, and keeping girls in the picture campaigns) (unesco & global education coalition, 2021, p.4, p.5) impact 1. following the adoption of the “convention against discrimination in education” in 1960 and beijing platform for action in 1995, remarkable progress has been achieved, with more than two-thirds of countries reaching gender parity (with the gender parity index [gpi] value between 0.97 and 1.03) to close the gender gap and accomplish universal primary education (unicef, 2020a) 3. almost 9,000 adolescent girls in sierra leone returned to school, supported by monetary incentives for school fees, uniforms, books, and other supplies (unicef, 2020b, p.4) 4. global education coalition actions are positively impacting: • 400 million learners • 12 million teachers ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 113 2. 40 of 153 countries have reached gender parity (world economic forum, 2020, p.4) • it is targeting to help 5 million girls to ensure their right to education (unesco & global education coalition, 2021, p.4, p.5) economic challenges 1. globally, statistics indicated: ● over three decades from 1990 to 2020, the labor force participation rate among females aged 15+ has decreased from 51.2% to 46% (the world bank, 2021a) ● only 55% of 15-64 years old women are represented in the labor market compared to 78% of men ● the ratio of women's unpaid work compared to men is 2:1 (world economic forum, 2020, p.11) ● only 28% of women were represented in managerial positions(un desa statistics division, 2020b), 25% in parliament, 21% at a ministerial level in 2019 (world economic forum, 2020, p.5) ● 50.5% of women worked with a lack of labor legislation protection, compared to 48.2% for men. (un women, 2013, p.2) ● 104 out of 189 countries still legally prohibit women from certain occupations ● 59 countries lack legislation to protect women from sexual harassment at work ● in 18 countries, by law, spouse can prohibit women from work (un women, 2018) ● for every dollar a man earns, on average, a woman is paid 54 cents (world economic forum, 2019a) ● the “motherhood penalty” accounts for about a 7% wage reduction per child(world economic forum, 2019a) ● it is predicted that due to job automation, for each position gained by a woman, they will lose 5, while the ratio for men is 1:3 (unesco et al., 2021, p.3) best practices 1. worldwide, the women’s empowerment principles on corporate social responsibility for gender equality, established by un women and the un global compact is signed by more than 1,000 ceos (un women, 2013, p.2) 2. the eu’s gender pay gap action plan launched in 2017 (unesco et al., 2021, p.29): • france, ireland, and portugal adopted labor laws to penalize companies without initiatives to bridge the gender pay gap ● in 2018, iceland established a regulation for companies with 25+ employees to be certified in terms of gender-equality to close the gender pay gap by 2022 (unesco et al., 2021, p.29) impact 1. since 2017: • 40 countries implemented 62 reforms enhancing gender equality (the world bank, 2020, p.7) • the economies that improved the most are saudi arabia, the united arab emirates, nepal, 3. data from 500 companies showed that the total return to shareholders was 34% higher among the firms with the greatest representation of women managers compared to those with the lowest female proportion (un women, 2013, p.2) http://www.oecd.org/newsroom/lackofsupportformotherhoodhurtingwomenscareerprospectsdespitegainsineducationandemploymentsaysoecd.htm http://www.oecd.org/newsroom/lackofsupportformotherhoodhurtingwomenscareerprospectsdespitegainsineducationandemploymentsaysoecd.htm ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 114 south sudan, são tomé and príncipe, bahrain, the democratic republic of congo, djibouti, jordan, and tunisia (the world bank, 2020, p.7) 2. almost usd 28 trillion, or 26%, could be added to the global gdp if gender equity is adopted in the labor market (mckinsey global institute (mgi), 2015, p.8) 4. between 2018-2020, 6.2 million underprivileged girls were provided with life skills training programs led by unfpa(unfpa, 2020d) early marriage and adolescent pregnancy challenges early marriage: the total number of girls married in childhood stands at 12 million per year. by 2030, more than 120 million additional girls will marry before their 18th birthday (unicef, 2021) adolescent pregnancy: statistics from developing countries showed: • at least 777,000 girls under 15 years give birth each year (who, 2020a) • 90% of births by adolescent girls happen within both marriage and union • the leading cause of death among 15 to 19 years old girls is pregnancy and childbirth-related complications (unfpa, 2021) best practices 1. unfpa-unicef global programme to end child marriage was launched in 2016 and extended for four more years in 2020 to cover more than 14 million girls from 12 countries in africa, the middle east, and south asia. (unicef, 2020c) this program encompasses: • enhance girls’ access to education and health care service • increase parent's and community’s awareness • promote gender equity • establish partnerships for families’ economic support • strengthen and enforce laws to determine the minimum age of marriage at 18 (unicef, 2020c) impact 1. since unfpa-unicef global programme to end child marriage was introduced, over 7.7 million adolescent girls and over 4.2 million community members have been provided with services, knowledge, and practices to exercise their rights (unicef, 2020c) 2. girls’ child marriage in sub-saharan africa decreased from 1 in 3 to 1 in 5 during the ten years of program implementation (unicef, 2020c) 3. unfpa (2018-2020): • 12,949communities publicly declared eradication of harmful practices, such as early and forced marriage and female genital mutilation (unfpa, 2020d) • > 6 million girls were provided with all forms of services and care to prevent child, early, and forced marriages (unfpa, 2020d) menstrual hygiene practices challenges ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 115 menstrual hygiene practices have three layers of barriers:(world economic forum, 2019c) 1. insufficient awareness: ● 71% of adolescent girls in south asia (india) are unknowledgeable about menstruation until their menarche (the united states agency for international development (usaid) et al., 2014, p.8) 2. lack of acceptance: ● cultural unacceptance and lack of social services and support have led to the continuation of the existence of bigotry practices such as “menstruation hut”(clark helen & sy elhadj as, 2020) 3. limited access: 3.a lack of basic sanitation globally: ● affects over 1.2 billion women (rhona scullion, 2017; the water supply and sanitation collaborative council (wsscc), 2020) ● negatively impacts 698 million school-age children (un desa statistics division, 2020a) ● presents in more than one third of schools (37%) (un desa statistics division, 2020a) ● exists in only 20% of healthcare facilities, among 19 countries from unicef multiple indicator cluster surveys, in 2019 (un desa statistics division, 2020a) 3.b lack of female hygiene products: ● 88% of women and girls in india are using homemade substitutes, such as old cloth, rags, hay, sand, or ash (the united states agency for international development (usaid) et al.,2014, p.6) ● in scotland, 1 in 4 women at schools and universities had trouble accessing menstrual products(nadia khomami, 2018) all these factors lead to absenteeism during the menstrual period: ● > 33% of schoolgirls in south asia(wateraid, 2018) ● at least 10% of females aged 15–49 at work, school, or social activities among 19 countries (un desa statistics division, 2020a) best practices 1. the wash sdg programme was launched in 2017 in 7 lowand middle-income countries, with three core practices: 1. wash facilities and practices 2. quality of service provision 3. governance of the sector (wash alliance international, 2021) 2. unicef menstrual health and hygiene (mhh) program is based on four main ‘pillars’: 1. social support 2. knowledge and skills 3. facilities and services 4. materials (unicef, 2019, p.39) 3. unhcr, in collaboration with afri pads, implemented an intervention: • “afri pads menstrual kit” with 4 reusable sanitary pads, underwear, soap, and bucket (tai kuncio, 2018, p.4) 4. the water supply and sanitation collaborative council established the sanitation and hygiene fund (shf). (clark helen & sy elhadj as, 2020) 5. the scottish parliament approved a plan to provide menstrual products publicly free (nadia khomami, 2018) • making menstrual products available and free of charge in public spaces such as community centers, schools, pharmacies, and youth clubs • subsidize distribution of female hygiene products in low-income localities. • promote tax-free policies for female hygiene products (nadia khomami, 2018) https://www.theguardian.com/uk-news/2018/aug/24/scotland-to-offer-free-sanitary-products-to-all-students-in-world-first ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 116 impact 1. the wash sdg programme targets to enhance hygiene behaviors for a population of 2 million in 7 countries in africa and asia(wash alliance international, 2021) 2. in south asia, the number of women using sanitary protection has increased from 10 million to more than 70 million women today (world economic forum, 2019c) 3. afri pads intervention has decreased absenteeism among schoolgirls by 50% (tai kuncio, 2018, p.5) contraceptive use challenges based on data from 57 countries: • only 50% of women can decide their health care, choose contraceptive methods, and refuse sexual intercourse (un desa statistics, 2020) • in 21% of countries, women cannot access contraceptive services without the consent of a parent, a spouse, a judge, or a medical committee (un desa statistics, 2020) best practices 1. wins4girls (wash, mhm) (unicef, 2019, p.23) 2. unfpa (2020): 2.a plan:(unfpa, 2020d) • 25 countries have established a consolidated sexual and reproductive health national plan 2.b sexual education: • 11 countries have implemented internationally standardized sexual school curricula • 4 countries have a roadmap to provide out-of-school sexual education 2.c services: • 6 countries have incorporated teenage sexual and reproductive health strategies beyond the health sector (unfpa, 2020d) impact 1. the economic impact of long-term investment of every $1 in family planning methods such as contraceptives resulted in annual benefits a total of $120, including $30-50 related to the reduction in infant and maternal mortality and the increase in economic growth by $60-100.(family planning 2020, 2020, p.2) 2. between 2018-2020: • 210 million couple-years of modern contraceptives were offered by unfpa.(unfpa, 2020d) • 107 million women and girls were provided with sexual and reproductive healthcare services (unfpa, 2020d) • 16 million sexually transmitted diseases were prevented (unfpa, 2020d) 3. in 2020, unfpa reported that contraceptive provision prevented: • 14.5 million unwanted pregnancies • 4.1 million unsafe abortions • saved lives of 39,000 mothers (unfpa, 2020b) women’s autonomy challenges ihtp, 2(1), 88-117, 2022 cc by-nc-nd 4.0 issn 2563-9269 117 recent un report across 57 countries indicates: • 75.2% of women have a decision on their own health care • this rate ranges as high as 92.3% in eastern and south-eastern asia to 59.1% in central and southern asia • around 75% of women can refuse to have sex • this rate ranges from 94.1% in latin america and caribbean to around 70% in both sub-saharan africa and central and southern asia • in 28% of those countries, married women cannot undergo abortion without their spouse consent (un desa statistics, 2020) best practices who and international human rights law advocated for the abortion-inducing drug availability at home (andrés lópez cabello & ana cecilia gaitán, 2021) france and the uk amended their medical abortion regulation temporary to allow medical abortion at home, during the covid-19 pandemic (andrés lópez cabello & ana cecilia gaitán, 2021) impact 1. according to a recent un report, in over 93% of 57 countries abortion has been legalized (un desa statistics, 2020) 2. 71 countries have bridged at least 97% of the gap and 48 countries reached the target of near parity in healthcare (world economic forum, 2019b, p.14) 3. according to uk data, in the six weeks following the amendment of their medical abortion regulation, almost 16,500 women underwent safe medical abortion at home at a time when many in-person services were on hold (andrés lópez cabello & ana cecilia gaitán, 2021) ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 81 regenerative economics for planetary health: a scoping review special issue: planetary health geordan shannon1,2,3, rita issa1,2,6, chloe wood2,3, ilan kelman1,4,5 1institute for global health, university college london, london, united kingdom; 2united health futures, geneva, suisse; 3stema, london, united kingdom; 4institute for risk and disaster reduction, university college london, london, uk; 5university of agder, kristiansand, norway; 6school of international development, university of east anglia, united kingdom corresponding author: g. shannon (geordan.shannon.13@ucl.ac.uk) abstract introduction: the relationship between humans and our planet is conditioned by an economic system that undermines rather than supports health. there has been an emerging focus on the relationship between economic structures and planetary health, but alternative economic approaches to support health for people and the planet require further development. regenerative economics offers a compelling approach to transform humankind’s relationships with each other and their environment. regenerative economics fosters grounded, pragmatic solutions to wider human and ecological crises that moves beyond a sustainability discourse towards one of regeneration. while there are, notionally, large areas of overlap between regenerative economics and planetary health, to date these have not been systematically articulated. methods: a scoping review was performed to examine the background, principles, and applications of regenerative economics, and their implications for planetary health. five databases (scopus, ovid medline, web of science, geobase, ieee xplore) were searched for peer-reviewed literature using key terms relating to regenerative economics and planetary health. findings were reported using thematic synthesis. results: the review identified a total of 121 articles and included 30 papers in the final review, from economics, industrial design, business, tourism, education, urban design and architecture, energy, technology, and food and agriculture. the principles of regenerative economics focused on people, place, planet, position, peace, plurality, and progress. putting these principles into action requires identifying and valuing different forms of capital, taking a dynamic systems approach, applying regenerative design, developing a true circular economy, good governance, and transdisciplinary education and advocacy. conclusions: while the principles of regenerative economics and planetary health are well aligned, the tools and actions of each field differ substantially. planetary health can learn from regenerative economics’ grounding in natural design principles, systems-based approaches, actions at the right scale and cadence, respect for diversity, community and place, and mindset that moves beyond sustainability towards a regenerative future. keywords heterodox economics, planetary health, regenerative economics, wellbeing economy introduction the prevailing global economic system undermines rather than supports planetary health (gill & benatar, 2020; horton et al., 2014; mair, 2020). the economy can be thought of as a system “the system that a society uses to take in resources and produce and distribute goods and services” (mair, 2020), which is, in turn, embedded in and shaped by wider social and ecological systems (raworth, 2017). economic systems mediate humanity’s impact: on people and the planet. globally, our economy, underpinned by ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 82 neoliberal capitalism, is not meeting basic human needs at a sustainable level of resource use, and not on track to do so (brand-correa et al., 2022; fanning et al., 2021; o’neill et al., 2018). this has substantial implications for health: how planetary resources are extracted, processed, and distributed at scale is one of the most fundamental determinants of health, patterning socioeconomic, geopolitical, and environmental factors (brand-correa et al., 2022; braveman & gottlieb, 2014; naik et al., 2019). much has been done to articulate the impact of economic systems on health (naik et al., 2019), or the impact of economic systems on the environment (everrit et al., 2010; perrings, 2005), but little has been done at the intersection of the two. by framing health as something that is interdependent with the well-being of the planet and our ecosystems (planetary health alliance, n.d.), planetary health provides a lens to understand interconnected, systemic impact of economic systems on both health and the environment (brand-correa et al., 2022). through a planetary health lens, the complex relationships between our economic structures and planetary health, and actions that can address this, can begin to be articulated. policy initiatives, such as the rockefeller foundation economic council on planetary health, have begun to demonstrate how the global financial system is structurally poorly equipped to address complex planetary health and global public goods issues (chenet, 2019). the who council on the economics of health for all (2022) reframes health and wellbeing as central to economic development, and centres planetary health in a whole-of-society approach. however, moving from a problem analysis (linking the economy and planetary health) to changing fundamentally harmful economic structures (articulating systemic alternatives) is challenging. ecological economists and others have for some decades been articulating systemic alternatives for planetary futures (brand-correa et al., 2022; colladoruano & segovia sarmiento, 2022). in “small is beautiful: economics as if people mattered,” schumacher (1973) argued for designing economies around the needs of communities and popularised environmentallyand socially-minded concepts such as ‘fair trade’ and ‘buy local.’ the steady state economy first proposed by daly (1977) was put forward as an alternative economic, moral, political, and biophysical system built on the axiom of ‘enough is best’. degrowth subsequently advocated for “transforming societies to ensure environmental justice and a good life for all within planetary boundaries” (degrowth, n.d.) through radical redistribution of resources and values-based economies. deglobalization argues for localising environmental and social justice through decentralised and pluralistic economic governance sensitive to regional needs (bello, 2008). aspects of these approaches are mirrored by wellbeing economy dimensions of valuing dignity and happiness, natural restoration, connection and belonging, fairness, and locally-rooted participation (wellbeing economy alliance, n.d.). a notable example of a wellbeing economy in action was new zealand’s world-first wellbeing budget in 2019 (te tai ōhanga new zealand, 2019). a circular economy approach has become popularised as a systems solution across various sectors to tackle global ecological challenges and regenerate local ecosystems (cheshire, 2019). more recent enquiries have asked what ‘living well within limits’ would look like in a world that contains both ecological constraints and social inequality (steinberger, 2021), such as doughnut economics, a framework for sustainable development that addresses ecological ceilings while providing just social foundations (raworth, 2017). many of these approaches implicitly consider human health, for example through engaging with concepts of ‘living well’ or designing economies for human needs, but, except for wellbeing economies, rarely address human health explicitly. akin to the economic alternatives outlined above, regenerative economics articulates an approach to redesigning economies in the face of critical social and ecological challenges. beyond social and environmental harm reduction objectives, regenerative economics asks how we can repattern social, cultural, and environmental practices to enable the flourishing of all life on the planet. it brings together regenerative practices (i.e., those that encourage regeneration or renewal of biosocial systems) (collado-ruano & segovia sarmiento, 2022) with a holistic approach to the economy based on living virtuously as a member of a community through wise resource management, a concept attributed to ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 83 aristotle (sanford, 2020). the roots of regenerative economics can be traced to the regenerative agricultural movement, an approach to land stewardship that focuses on working in harmony with nature and helping create the conditions under which ecosystems can thrive (collado-ruano & segovia sarmiento, 2022). both regenerative economics and regenerative agriculture are influenced by and aligned with indigenous worldviews and environmental practices (ndn collective, 2020; united frontline table, 2020). regenerative economics offers a paradigm shift away from linear, incremental improvements towards transformative systemic solutions that incentivise regenerative activities around wider environmental, social and governance objectives (mcphearson et al., 2021). given its focus on repatterning social, economic, cultural, and environmental relationships to not only repair but renew human and ecological wellbeing, regenerative economics offers a compelling approach for the field of planetary health. while there are notionally areas of overlap between regenerative economics and planetary health, little has been done at the intersection of these fields. this may be due to the relative recency of both fields of practice, and their radical departure from health and economic ‘orthodoxy.’ this research emerged from a curiosity about the lessons that the planetary health movement could derive from regenerative economic practice to both prevent further harm and begin a path to planetary health regeneration. thus, the aim of this article is to better understand the principles and processes of regenerative economics and how they can inform planetary health action (and vice versa). to do this, we performed a scoping review of the background, principles, and applications of regenerative economics, and discussed their implications for planetary health research and action. a major contribution of this work is to systematically articulate the principles and processes of regenerative economics, highlighting what planetary health can learn from regenerative economics and vice versa. to build this case, the document is structured in three main sections. first, we present our approach to scoping and collating the literature and mapping the current landscape. next, we present the key results according to principles, practices, and implications for planetary health. finally, we engage in a discussion about the current landscape and discuss ways forward for planetary health. methods we performed a scoping review of the literature by adapting arksey and o’malley’s (2005) methodological framework across the five stages of research question articulation, identification of relevant studies, study selection, charting the data and collating the results. we followed the preferred reporting items for systematic reviews and metaanalyses extension for scoping reviews (prisma-scr) guidelines to report our results (tricco et al., 2018). the review protocol was registered on the open science framework (doi 10.17605/osf.io/phjaf). research question our review focused on mapping the concepts and applications of regenerative economics, and subsequently reflecting on their relevance to planetary health. as such, the research question was framed: what are the principles and processes of regenerative economics, and how can they inform planetary health research and action? identification of relevant resources searches were conducted in august 2022 in five databases covering social sciences, economics, and life sciences: scopus, ovid medline, web of science, geobase, and ieee xplore. key terms related to regenerative economics were utilised in the search (“regen* econom*” or "regenerative cap*” or "regenerative fin*") and/or its (principles, practice, or applications). terms (“health” or “planetary health”) were then added, and the search was repeated to identify any resources that sat at the intersection of health and regenerative economics. forward and backward screening of included articles references was also performed. selection of relevant resources following de-duplication, titles and abstracts were independently screened according to the selection criteria. full texts were then screened in a similar process. articles were included if they outlined an ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 84 aspect of the background, principles, or applications of regenerative economics, or how they may be relevant to planetary health. the search was not restricted to any particular time frame or article type. charting the landscape and collating the results information was extracted from each included resource according to the institutional location of lead authors, the focus areas of the paper, the core principles of regenerative economics, processes involved in regenerative economics, case studies and applications of regenerative economics, and interventions or ideas relevant to planetary health. we collated the results using a thematic synthesis approach (thomas & harden, 2008). first, the text from the articles was scanned and relevant sections describing the principles and applications of regenerative economics were extracted into a matrix. these codes were grouped into descriptive themes, and ultimately these were used to generate more high-level thematic groups. results academic landscape a total of 121 articles were identified, including six cross-referenced articles. following de-duplication, 87 references were screened by title and abstract. a total of 41 articles were selected for full text screening, where an additional 11 articles were excluded due to not meeting the inclusion criteria and/or not being available. a total of 30 papers were included in the final review (figure 1). identified studies were published between 1999 and 2022, with the majority (n=26) published since 2016. lead authors were based at a mixture of global institutions across most continents, although were largely from more affluent countries, and included a variety of methodological approaches and focus areas. summary characteristics of included articles are provided in table 1. the focus areas of the articles are outlined in figure 2. roots of regenerative economics regenerative economics was defined in a variety of ways, which emphasise different yet complementary perspectives. the first group of definitions focused on the linguistic roots of regeneration, for example (barauna et al., 2021) who highlight the latin term regenerare, referring to reproduction and revival. the second group of definitions derived inspiration from the natural world. fullerton (2015) describes a regenerative economy as “one which uses universal patterns and principles as a model for economic activity” and müller (2020) as being “based on the principles and strategies that life develops in nature.” similarly, wahl (2016) outlines how a regenerative culture is based on “...understanding our deep interbeing as fundamentally interconnected expressions of life itself.” the third group of definitions infused a more holistic perspective on how economic systems can enable flourishing, summarised succinctly by lovins (2016): “it is an economy in service to life.” brown and colleagues (2018) define a regenerative economy as “enabling social and ecological systems to maintain a healthy state and to evolve,” whereas (blau et al., 2018) state that it is an “economic system that works to regenerate capital assets providing goods and services that contribute to our well-being.” related to these was a desire to align human economic activities with ecosystem health. for example, morseletto (2020) focuses on “creating better conditions to support the life-enhancing qualities of ecosystems” and ateljevic (2020, citing hunter) states that “to align the human economy with this purpose [service to life], we must learn to live as nature lives, organise as nature organises, and learn as nature learns guided by a reality-based, life-centred, intellectually-sound economics.” fourth, some authors defined regeneration as a component focus of circular economics. in circular economics, concepts of restoration and regeneration of both natural and technical systems feature side by side, although the concept of regeneration was at times poorly defined (morseletto, 2020). despite the variety of definitions, there was general agreement that the paradigm of regenerative economics goes beyond sustainability alone. sustainability was seen as an important but ultimately un-transformative objective; by focusing on harm reduction or restoration, sustainability approaches were not seen to lead to the systemic shifts required to both uphold life and allow it to flourish. in this vein, articles described the spectrum of regenerative ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 85 economics and how it extends beyond sustainability, as outlined by fullerton (2015). this spectrum demonstrates how regenerative economic design pushes us to move beyond a sustainability mindset towards holistic and regenerative systems. on one side of the spectrum are economic approaches (conventional, ‘green’) that lead to degeneration, based on mechanistic and reductionist thinking, leading to more energy, waste and materials being used. on the other side are economic approaches (sustainable, restorative, regenerative) that lead to exponentially greater regeneration and less energy and material use, through holistic thinking and natural system design (fullerton, 2015). this model was adapted from reed’s (2007) original trajectory of environmentally responsible design. the origins of regenerative economics trace back to agricultural practices of the mid-20th century, although arguably has deeper roots in various indigenous philosophies. as early as 1942, rodale used the term regeneration to refer to an organic agricultural practice that restores soil damaged by intensive agriculture (collado-ruano & segovia sarmiento, 2022). this was widely promoted from the 1970s as a means of organic renewal of complex living systems (see dahlberg, 1991 cited in morseletto, 2020). from these agricultural principles, the concept of ‘regenerative economic development’ emerged (mang & reed, 2012 cited in morseletto, 2020). this initial conceptual model was subsequently adapted by entrepreneurs such as hawken (1993) and anderson (2004), who articulated how business activities could promote regenerative and restorative environmental practices. similarly, the concept was also adapted and adopted by a subset of the design and architecture community. for example, lyle (1994) initiated regenerative development and design practices that fuse ecology, architecture, design, permaculture, and regenerative agriculture (morseletto, 2020), which in turn influenced wide scale land regenerative practices to improve the health of ecosystems (e.g., kellert, 2004; reed, 2007). few articles recognised how regenerative economics aligned with certain indigenous philosophies and land management practices based on harmony with nature (collado-ruano & segovia sarmiento, 2022). principles of regenerative economics regenerative economics is built upon principles that orient towards building an economy in service of life. these have also been referred to as ‘tendencies,’ which capture how a system moves to being regenerative (rodale institute, n.d.). the review identified 37 key principles that were organised into seven overarching themes that relate to place (community-building, localisation, renewal and resilience), planet (ecological mindedness, revaluing natural capital, environmental protection & regeneration), position (right relationship and right scale), people (social justice, designing an economy the works for everyone, and valuing human knowledge and creativity), peace (harmony and balance, interconnectedness), plurality (diversity, complexity, traditional knowledge), and progress (paradigm shift, transformation of culture, moral vision). the principles of regenerative economics are summarised in figure 3. the first group of principles focused on place. regenerative economics is a practice that has been built, literally, from the ground up. conceiving regions as socio-ecological spaces and channelling resources towards building localised economies were central to a regenerative approach (frank & marsden 2016; perkins & jessup 2021). community-building of healthy human networks is core to this, offering empowered participation and social solidarity (goerner 2019; collado-ruano & segovia sarmiento 2022). honouring community and place enhance both individual and collective wellbeing, across humans and non-human life, and nourishes human, social, intellectual, and physical capital (fullerton 2015). it also boosts resilience through a greater ability to adapt, evolve, and respond to stressors (fullerton 2015; alves et al. 2022). the second group of principles focused on the planet. there was a deep sense of ecological mindedness across all articles, represented by biophilic design approaches (blau et al. 2018; fullerton 2015), emphasis on environmental protection and restoration (arman & mark-herbert 2021), a holistic worldview, and general awareness of and respect for planetary support systems. awareness of and respect for the environment and planetary support systems was a common thread throughout all papers. designing with and for nature was a principle that emerged from most articles, ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 86 referring to how the study of the natural world could help inform the design of social systems through biomimicry, biophilic design, and nature-based solutions (fullerton 2015; fath et al. 2019; goerner 2019; kadar & kadar 2020). designing for the whole so that it is in balance with nature and draws on universal principles and patterns was also important (fullerton 2015; goerner 2019; lovins & fullerton 2014). the third group of principles focused on position, being in ‘right relationship’ and acting at the right scale. the concept of ‘right relationship’ was first coined by brown & garver (2009) as a vision for a whole-earth economy that serves people and our ‘common wealth.’ right relationship refers to carefull actions that recognise connectedness, complementarity, the interdependence of all life forms, and synergies across different relational systems (fath et al. 2019; morseletto 2020; sheldon 2021). the literature also espoused a multi-scalar perspective to ensure the right scale of design, as well as striving to ensure connection across and between scales of operation. the concept of scale applied to both place (localisation) and time (long-range solutions). the fourth group of principles focused on people. at the core of regenerative practice was a cultural shift to align human activities with ecological flourishing (hunter lovins 2016; lovins & fullerton 2014). social justice was at the core of this, with concepts such as individual and collective liberation, equity, justice, and decolonization central to regenerative futures (collado-ruano and segovia sarmiento 2022; howson 2021; perkins and jessup 2021). openness to knowledge reflected a desire for deeper thinking and an epistemological shift. the convergence of disciplines and collaborative learning was summarised by the principle of transdisciplinarity (lyle 1996; sonetti et al. 2019). in the realisation of socioeconomic vitality and an economy that works for everyone, economic systems are inverted for sustainability and social justice and economic performance is reoriented towards wellbeing and shared prosperity through the long-term creation of a steady-state economy (perkins and jessup 2021). this requires stewardship & governance, making wiser choices, operating within planetary boundaries, and being responsible to each other and the environment (frank and marsden 2016; howson 2021; alves et al. 2022). the fifth group of principles focused on peace. living in harmony and balance with all parts of the larger whole was a guiding principle for a regenerative relationship between nature and people (fath et al. 2019; fullerton 2015; goerner 2019). this required a holistic perspective that prioritises the wellbeing of the whole and tends to the weakest component to strengthen the whole system. connectedness and care relate to concepts of reciprocity and mutualism and how they have the potential to repair community, restore lost connections, and re-join the web of life (alves et al. 2022; goerner 2019; sheldon 2021). designing with and for nature was a principle that emerged, in contrast to control over or controlling for complex variables (haselsteiner et al. 2021; vineis and mangone 2022). the sixth group of principles focused on plurality. in society, as in nature, diversity was identified to enhance systemic wellbeing. pluralism is also related to the appreciation of different bioregional zones and cultures, as well as valuing the diversity of different perspectives (alves et al. 2022; ateljevic 2020). this included respect for traditional and indigenous knowledge systems. complexity was a prerequisite for regenerative practice, through a focus on systems behaviours such as non-linearity, circular flows of resources, feedback loops, and leverage points (alves et al. 2022; duguma et al. 2020; fath et al. 2019; lovins & fullerton 2014; sonetti et al. 2019). these processes reflected an awareness of universal patterns and flows of resources and highlighted the co-evolutionary and dynamic processes of ecosystems (duguma et al. 2020; fath et al. 2019). the seventh group of principles focused on progress. they capture the fundamental paradigm shift that must occur for a regenerative economy to take root (ateljevic 2020; guinot 2020). this requires transformative thinking, the identification of root causes, and a radical redesign and reconceptualization of the economic system (lovins 2016; lovins & fullerton 2014). this type of shift was not seen to occur through intellectual reasoning alone, but instead through a shift in culture, morals, and values towards living in harmony and balance and ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 87 touching on the ‘sacredness of life’ (fullerton 2015). it also takes creativity and cultural leaders who can enable a reimagining of the future, a vision based on both hope and evidence (ateljevic 2020; goerner 2019; perkins and jessup 2021). processes of regenerative economics while the guiding principles of regenerative economics help orient the field, these provide little practical guidance about how to put them into action. the review identified a set of processes that help explain how regenerative economics can be applied at scale. these were organised into six overarching groups: identifying and valuing alternate forms of capital, good governance, a truly circular economy, taking a dynamic approach to systems, applying regenerative design, and education and advocacy. a regenerative economy is built on a fundamental realignment of societal values, where economic systems are inverted to promote sustainability and social justice (perkins and jessup, 2021). this requires identifying and valuing alternate forms of capital: the explicit identification of a holistic array of human and environmental resources, and the construction of new incentive systems to value them. sheldon (2022) and lovins & lovins (2016) articulate a variety of different forms of capital beyond financial capital, including social, natural, trust, compassion, innovation, cultural, experimental, and intellectual capital. forms of natural capital include biodiversity, health, biosphere resources, living systems, and ecosystem services such as the provisioning of food or climate regulation (hunter lovins, 2016; vineis & mangone, 2022); see also (european environmental agency, 2014). while avoiding the commodification of the environment (howson, 2021), it is also necessary to think about new ways of measuring different forms of capital so that they can be appropriately valued (haselsteiner et al., 2021; sheldon, 2022). this should be guided by community inputs, and signal a move away from a purely transactional, monetised economy (sheldon, 2022). examples of non-capitalist forms of ownership, nonmonetary exchange and beneficial community-based development that values diverse forms of local capital include agroecology and food sovereignty initiatives, and community-led, regenerative tourism (sheller, 2021). effective and inclusive governance underpins regenerative economies (alves et al., 2022). governance innovation may occur at various layers of the socio-ecological system. at the local level, this could include engaging communities to re-build economies dedicated to wellbeing (perkins & jessup, 2021, see also translocalhealth.com), and strengthening community-based organisations and people's assemblies to ensure citizen voice (alves et al., 2022; goerner, 2019; sheller, 2021). nationally, policy reforms can help build structural resilience through decentralisation of power (lovins & fullerton 2014) and financial reforms to regain sovereignty over domestic financial systems and incentivise these systems to act in the interest of the common good (fullerton & lovins, 2009). at the international level, progressive regionalism approaches (frank & marsden, 2016) to forge international alliances without imposing a particular set of values (howson, 2021) aligns with a decolonising agenda (colladoruano & segovia sarmiento, 2022). policy reforms at all levels should be supported by reflexive and multilevel governance and monitoring frameworks (frank & marsden, 2016). a truly circular economy represents a shift from a linear and degenerative system towards one that is regenerative with circular flows of resources that are effective and efficient, reduce or eliminate waste, and are ultimately self-renewing (guinot, 2020; kadar & kadar, 2020; perkins & jessup, 2021). circular principles may be applied across technical/industrial or biological processes. technical and manufacturing strategies focus on the extension of the life of a particular product through its reuse, repair, renewal, refurbishment, remanufacture, maintenance, and upgrading, or the transformation of old parts into new products (morseletto, 2020). industrial processes in a circular economy may include the use of renewables over fossil fuels, the avoidance of harmful chemicals, and regenerative waste management processes (lyle, 1996), or the installation of a completely different foci to industrial processes altogether. for example, viruega sevillia et al.(2022) suggest building-in integrated pollution prevention and control, industrial ecological practices, and system dynamics and life cycle thinking to industrial processes using techniques such as process stimulation, best available techniques (bat) ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 88 analysis and dynamic material and energy flow analysis. biological processes focused on natural capital restoration may focus on healthy waste production, reversing environmental damage, and cradle-to-cradle environmental regeneration. a regenerative economic model represents the ability to think and plan across dynamic systems, at the right scale and cadence of action. localisation approaches focus on nurturing an economy that honours community and place and encourages the revitalisation of a network of localised resources. micro-enterprises, re-localisation policy, slow money, slow-food, and purpose-driven, for-benefit enterprises are relevant examples (fullerton, 2015). long-term thinking means that regenerative practices focus on sustainable solutions that will last, have an awareness of intergenerational impacts, and encourage a slowness and deliberateness of actions. embracing complexity is key to enable thinking and planning across dynamic systems. examples of technology identified that embody systems thinking include cybernetics, applying ai for design, and blockchain platforms. howson (2021) describes how blockchain platforms can enable decentralised approaches to building regenerative economies through renewable energy grids, food production networks, environmental monitoring, supply chain management, charitable giving, humanitarian action, ecological regeneration, democratic governance, and local currencies. regenerative urban and regional design processes support the renewal and resilience of communities and ecosystems. regenerativerestorative neighbourhoods and cities employ a place-based design that respects the geopolitical location and its dynamics, cultures, and needs (haselsteiner et al., 2021). the design process includes strategies to use local resources efficiently, such as utilising local and regional supplies where possible, reusing resources, and restoring degraded ecosystems, as well as employing agro-ecological principles into urban and peri-urban food growing and distribution (frank & marsden, 2016). other urban design strategies include restorative energy systems, zero waste design, preservation of natural water cycles, providing opportunities for reconnection with nature through green spaces and natural corridors, and fostering bottom-up, connected regional cultures through identifying and supporting nodes of development to meet the circular economy needs (frank & marsden, 2016; haselsteiner et al., 2021). transitioning to a regenerative economy requires a transformation of current thought patterns, which is in turn underpinned by a widespread cultural shift. this shift can be facilitated by education and advocacy strategies that facilitate deep reflection, connection to the whole, and collaborative learning. emerging from this process is a new cultural narrative that centres the health and wellbeing of the whole and connects people with the principles of regeneration outlined above. an example of regenerative education in action is the unescorecognised tini education program in ecuador, which “teaches students the importance of understanding the interdependence of natural and social phenomena in co-evolutionary terms … links schools and communities and allows the development of regenerative cultures” (collado-ruano & segovia sarmiento, 2022). while a unifying, noble purpose that inspires people to serve a cause greater than themselves is important, a facilitative environment that enables these ideas into actions is also required (fullerton, 2015). discussion regenerative economics encourages the realignment of human values and activities to support the flourishing of all life through nurturing a healthy, sustaining relationship between humans and their environment. a major contribution of this article was the systematic articulation of the principles and processes of regenerative economics, so that the planetary health movement can learn from regenerative economics and vice versa. the principles underpinning regenerative economics can be thought of in terms of people (social justice, designing an economy the works for everyone, and valuing human knowledge and creativity), place (communitybuilding, localisation, renewal and resilience), planet (ecological mindedness, revaluing natural capital, environmental protection & regeneration), position (right relationship and right scale), peace (harmony and balance, interconnectedness), plurality (diversity, complexity, traditional knowledge), and progress (paradigm shift, transformation of culture, moral ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 89 vision). these principles can be put into practice through six transformative processes: identifying and valuing natural and human capital, taking a dynamic approach to systems, applying regenerative design, developing a true circular economy, good governance, and transdisciplinary education and advocacy. while the vision of regenerative economics spans a range of disciplines and lays out an ambitious vision for the future, the field itself is relatively new and the literature base remains under-developed. critiques of regenerative economics in identified papers included the replication of capitalist and colonial logic such as ‘greenwashing’ (collado-ruano and segovia sarmiento 2022; howson 2021; sheldon 2021), lack of widespread adoption (ateljevic 2020), the tendency of projects to emphasise the environment over the social / cultural aspects of regeneration (fath et al. 2019; morseletto 2020), and the difficulty of convincing those who benefit the most from the current system to think differently (fullerton & lovins, 2009). in addition, some articles lacked conceptual distinction between regenerative and circular economics or used terms interchangeably (arman and mark-herbert 2021; guinot 2020; kadar and kadar 2020; sulis et al. 2021; vineis and mangone 2022). although there was a consensus that regenerative economics reaches beyond the objective of sustainability alone, some articles tied their analysis to the un sustainable development agenda (haselsteiner et al. 2021; sonetti et al. 2019), which has been criticised as failing to deliver on its transformative promise with an ongoing focus on a western, capitalist, and anthropocentric model of development (collado-ruano & segovia sarmiento 2022; hickel, 2019). the economics of regeneration the regenerative economics approach calls for a radical transformation of economic thought. as such, it had very limited (or no) grounding in neoclassical economic theory and practice. as a field, regenerative economics provides a coherent alternative to orthodox thinking, which was positioned as a driver of globalised market fragilities, socioeconomic inequalities, environmental extractivism, human and environmental externalities, and the concentration of wealth and power in the hands of a few (lovins & fullerton 2014). through regenerative economics, a linear and reductive approach to economic thinking is replaced by non-linear, complex, and dynamic systems perspectives (sanford, 2020). the focus on efficient allocation of scarce resources is instead dealt with through the concept of ‘wise management’ and stewardship of resources (ibid), as well as living within planetary boundaries (steinberger, 2021). the pursuit of “unbridled exponential economic growth” at all costs (perkins, 2021) as a globalised economic objective of neoliberal capitalism was explicitly rejected. fundamentally, realising a regenerative economy for people and the planet comes down to reorientation of values and a re-valuation of different forms of common wealth, underpinned by different economic models. this means a radical reorientation of economic structures away from neoliberal capitalist models and weaving together several processes, including the recognition that finance is a means, not an end. while finance may be a means to a healthy economy, it is not the sole ‘purpose’ of economic activity nor a process to amass, exploit or hoard financial wealth from others (lovins & fullerton 2014). the hegemony of financial capital over other forms of value is pathognomonic of neoliberal capitalism, an international economic configuration characterised by transnational structures, the internationalisation of production, and the removal of barriers to the global flows of commodities and capital (ortiz wadgymar, 1994; patanaik, 2017). from the perspective of ecological, feminist, and marxist economics, neoliberal capitalism represents the hegemony of ‘the market’ over state, household and commons provisioning systems, or a particular structuring of the economy that “prioritises the accumulation of exchange value above other types of value” (mair, 2020). regenerative economics attempts to reclaim the value of a diverse array of capital such as human, natural, and cultural capital so that economies may be aligned with nurturing and promoting the health of these assets. there is a conceptual overlap and synergies between regenerative economics and other schools of heterodox economics. primarily, regenerative economics is most aligned with ecological economics, a discipline that examines economic systems as embedded in and shaped by wider social and ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 90 ecological systems (brand-correa et al., 2022). commonly used ecological economics terms such as steady-state economy, planetary boundaries, and a focus on biophysical system dynamics were commonly used in the regenerative economics literature. however, fath et al. (2019) warn against a focus on the ecological aspects of an economy at the expense of its social aspects and outline the limitations of “metaphoric extrapolations from biology and ecology” alone. regenerative economics literature does not explicitly reference ecofeminism but shares many similarities, both being political and philosophical movements that bridge environmental and social justice, built from translocal grassroots action. ecofeminism connects the exploitation of nature and people (largely focused on women’s experiences of oppression) through patriarchal, capitalist, and colonial systems (federici 2004, 2018; gaard & gruen 1993; shiva 2016). regenerative economics also shares commonalities with other forms of economic practices that prioritise social and economic justice, such as marxist economics (benería, 1995; brand-correa et al, 2020; glyn, 1990). indigenous knowledge underpins much regenerative practice but was not outlined in great depth in the identified literature. the wider activist movement articulate these links in more detail, with groups such as the ndn collective promoting indigenous regenerative economies that value traditional knowledge and practices. while recognising the plurality of indigenous cosmologies, there are many commonalities between indigenous knowledges around regenerative practices. for example, vivir bien or buen vivir, based on the andean concepts of suma qamaña and sumaq kawsay, emphasizes living in harmony with each other and nature, and prioritises principles of holism and the pacha, coexisting in multipolarity, dynamic equilibrium, complementarity, and diversity (solon, 2018). similarly, indigenous australian land management practices (known as caring for country) originate in the holistic relationships of aboriginal and torres strait islander peoples with the environment, which serves as foundation for indigenous culture, kinships, spirituality, and law (hill et al, 2013). indigenous ancestral knowledge was seen as a guide to regenerative economies in north america, with interconnectedness, right relationship, reciprocity, mirroring natural principles, honouring place, and social justice underpinning an indigenous-informed approach to regenerative economic practice (ndn network, 2020). relevance to and avenues for planetary health regenerative economics offers useful points of convergence and parallels to the field of planetary health. both disciplines have emerged from relatively conservative, institutionalised fields economics, and health that haven’t necessarily considered their negative externalities nor accounted for ecology in their practice. both regenerative economics and planetary health represent an attempt to transform their fields towards more regenerative practice on the basis that ecosystem flourishing is necessary for human health and functioning economic systems. in this way, the principles of regenerative economics map onto those of planetary health. planetary health is a “solutions-oriented, transdisciplinary field and social movement focused on analysing and addressing the impacts of human disruptions to earth’s natural systems on human health and all life on earth” (brown, 2002). planetary health has embedded systems thinking (iyer et al., 2021; pongsiri et al., 2017; united health futures, 2021), social justice (gill & benatar, 2020), and respect for nature (baumgartner, 2021) into its practice, which align closely with the principles of regenerative economics identified by this review. while there are potentially many interesting ways to read-across disciplines, one illuminating example is to reflect on how the concept of ‘health’ is operationalised by each field of practice. on the one hand, planetary health centres the health of people, outlining the impact of humans on biospheric systems and its subsequent impact on health and disease (planetary health alliance, n.d.). this attempts to move beyond the purely individualistic, mechanistic, and biomedical approach to health that has been the dominant paradigm, in recognition of the interconnectedness of human and planetary wellbeing as a relational state. on the other hand, regenerative economics tends to focus more on systemic health, or health of the whole. by focusing on the health of the system, as well as aligning the system towards human flourishing, different leverage points can be identified that enable systems-based solutions to emerge. considering both constructs of ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 91 health unlock new possibilities in planetary health research and action. as an emerging movement that draws from other fields, planetary health may benefit from building on the strengths of regenerative economics and applying relevant best practice. for example, planetary health identifies the need for a systems approach (iyer et al. 2021; pongsiri et al. 2017); regenerative economics provides practical strategies and tools that embrace complexity and apply systems thinking through urban design (blau et al. 2018; frank & marsden 2016), agriculture (sheldon 2021), computational analyses (kadar and kadar 2020), and other forms of technology such as blockchain (kadar and kadar 2020; howson 2021). regenerative economics also demonstrates how small-scale, place-based initiatives can effectively respond to large-scale global crises, through tailoring responses to the right scale of activity and linking up these actions in a global network. planetary health advocacy tends to be concentrated in the global arena, with limited networks of support for small-scale localised initiatives (translocal health, n.d.). planetary health may be able to learn from regenerative economic practice that emphasises understanding the right scale and cadence of response depending on the need at hand (frank & marsden 2016; keesstra et al. 2018). finally, regenerative economics calls for approaches that move beyond sustainability toward regeneration; this requires a cultural shift in patterns of activities that go above and beyond problem analysis and harm reduction. planetary health may benefit from reflection about how its activities not only avert human and environmental disasters, but also how it can help regenerate systemic human and ecological wellbeing. towards transformative action although the values of regenerative economics and planetary health are closely aligned, the practices differ substantially. planetary health has tended to use the tools of public and global health such as epidemiological analyses and political advocacy to advance the field. on the other hand, the applications of regenerative economics tended to draw on design and land-management practices and tools, outlined above. there is an opportunity for both fields to learn from and adapt different cross-disciplinary tools. for example, regenerative economics calls for different ways to measure natural and human capital; epidemiological and environmental modelling from planetary health may provide a replicable and valid way to measure and value these alternative forms of capital, with a focus on health, social and environmental assets. regenerative economics bridges fundamental principles with practical action. the discipline is shaped by profound principles, which help guide several processes and practical actions. the attention given to principles and process contrasts with the outcome-orientation of neoclassical economics that tends to prioritise outcomes of profit maximisation, efficiency, and growth (brand-correa et al., 2022; goerner, 2019; schmelzer, 1993). the principles and processes outlined in figure 3 represent a unifying framework while also allowing for a diversity of practice and outcomes that are community driven and tailored to local needs. beyond theory, regenerative economics is an art and science in action, with a grounded and practical focus reflecting its permaculture roots. practical examples of regenerative economics spanned regenerative tourism, industrial sectors (manufacturing, waste), energy, agri-food systems, education, technology, land stewardship, governance, architecture, business, and urban design. some examples relevant to planetary health are highlighted in figure 4. conclusion the fields of planetary health and regenerative economics are working towards similar objectives from different disciplinary perspectives. there are many ways that each field can learn from the other. collective efforts at all levels of the system and across all sectors are required to avert the worst outcomes of climate crises and other anthropogenic environmental changes (ipcc, 2022). while working together towards a common objective is essential, these must be done without duplicating efforts. both planetary health and regenerative economics call for transdisciplinary approaches, however little has been done to date at the intersections of these fields to join up the dots. there is much potential for both fields of practice to embed practically and intellectually in each other’s worlds through collaboration, shared ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 92 funding initiatives, education, and communitybuilding. regenerative economics offers a compelling blueprint for values-based, practical, multi-scalar action in planetary health. planetary health can draw on regenerative economics’ grounding in natural design principles, systems-based approaches, actions at the right scale and cadence, respect for diversity, community and place, working towards the health of the whole, and putting into practice initiatives that move beyond sustainability towards a regenerative future. these strategies can help both fields to not only prevent further planetary harm, but also begin a path to planetary regeneration built upon a widespread cultural shift. references alves, f. m., santos, r., & penha-lopes, g. (2022). revisiting the missing link: an ecological theory of money for a regenerative economy. sustainability: science practice and policy, 14(7), 4309. amalina, f., razak, a. s. a., krishnan, s., zularisam, a. w., & nasrullah, m. (2022). a comprehensive assessment of the method for producing biochar, its characterization, stability, and potential applications in regenerative economic sustainability – a review. cleaner materials, 3, 100045. athena protocol. (2022, april 9). regenerative finance: innovation for a sustainable future. coinmonks. https://medium.com/coinmonks/regenerativefinance-innovation-for-a-sustainable-future315580e11f90 arksey, h., & o’malley, l. (2005). scoping studies: towards a methodological framework. international journal of social research methodology, 8(1), 19–32. arman, s., & mark-herbert, c. (2021). re-commerce to ensure circular economy from consumer perspective. sustainability: science practice and policy, 13(18), 10242. ateljevic, i. (2020). transforming the (tourism) world for good and (re)generating the potential “new normal.” tourism geographies: an international journal of tourism place, space and the environment, 22(3), 467–475. barauna d, stafford fdn, farina mz, aleixo aco. (2021). covid-19 and the emergency of new economies for the design of a new world. strategic design research journal. 14(1). https://pdfs.semanticscholar.org/976d/078d35 218a91804c96976ffb38bb26da7217.pdf baumgartner, j. (2021). planetary health: protecting nature to protect ourselves. samuel myers and howard frumkin (eds). international journal of epidemiology, 50(2), 697–698. bello, w. (2008). deglobalization: ideas for a new world economy. zed books ltd. benería,l. (1995). toward a greater integration of gender in economics. world development, 23(11), 1839-1850. https://doi.org/10.1016/0305-750x(95)00095t. berrett-koehler publishers, brown, p., garver, g., & garver, g. (2009, february 9). from berrett koehler publishers: right relationship. berrettkoehler publishers. https://www.bkconnection.com/books/title/rig ht-relationship? blau, m. l., luz, f., & panagopoulos, t. (2018). urban river recovery inspired by nature-based solutions and biophilic design in albufeira, portugal. land, 7(4), 141. brand-correa, l., brook, a., büchs, m., meier, p., naik, y., & o’neill, d. w. (2022). economics for people and planet-moving beyond the neoclassical paradigm. the lancet. planetary health, 6(4), e371–e379. braveman p, gottlieb l. (2014). the social determinants of health: it’s time to consider the causes of the causes. public health reports, 129(1_suppl2):19-31. doi:10.1177/00333549141291s206 brown, a. (2002). planetary health. interdisciplinary environmental review, 4(2), 159. chenet, h. (2019). planetary health and the global financial system. the rockefeller foundation economic council on planetary health, uk. cheshire, d. (2019). what is a circular economy? in building revolutions (pp. 3–12). riba publishing. collado-ruano, j., & segovia sarmiento, j. (2022). ecological economics foundations to improve environmental education practices: designing regenerative cultures. world futures, 1–28. daly. (1977). steady state economy. san francisco. https://books.google.com/books?hl=en&lr=&id http://paperpile.com/b/iq80a1/oexgg http://paperpile.com/b/iq80a1/oexgg http://paperpile.com/b/iq80a1/oexgg http://paperpile.com/b/iq80a1/oexgg http://paperpile.com/b/iq80a1/oexgg http://paperpile.com/b/iq80a1/oexgg http://paperpile.com/b/iq80a1/oexgg http://paperpile.com/b/iq80a1/oexgg http://paperpile.com/b/iq80a1/oexgg http://paperpile.com/b/iq80a1/4dri5 http://paperpile.com/b/iq80a1/4dri5 http://paperpile.com/b/iq80a1/4dri5 http://paperpile.com/b/iq80a1/4dri5 http://paperpile.com/b/iq80a1/4dri5 http://paperpile.com/b/iq80a1/4dri5 http://paperpile.com/b/iq80a1/4dri5 http://paperpile.com/b/iq80a1/4dri5 http://paperpile.com/b/iq80a1/4dri5 http://paperpile.com/b/iq80a1/4dri5 http://paperpile.com/b/iq80a1/4dri5 http://paperpile.com/b/iq80a1/frpfh http://paperpile.com/b/iq80a1/frpfh http://paperpile.com/b/iq80a1/frpfh http://paperpile.com/b/iq80a1/frpfh http://paperpile.com/b/iq80a1/frpfh https://medium.com/coinmonks/regenerative-finance-innovation-for-a-sustainable-future-315580e11f90 https://medium.com/coinmonks/regenerative-finance-innovation-for-a-sustainable-future-315580e11f90 https://medium.com/coinmonks/regenerative-finance-innovation-for-a-sustainable-future-315580e11f90 http://paperpile.com/b/iq80a1/swgv5 http://paperpile.com/b/iq80a1/swgv5 http://paperpile.com/b/iq80a1/swgv5 http://paperpile.com/b/iq80a1/swgv5 http://paperpile.com/b/iq80a1/swgv5 http://paperpile.com/b/iq80a1/swgv5 http://paperpile.com/b/iq80a1/swgv5 http://paperpile.com/b/iq80a1/88gol http://paperpile.com/b/iq80a1/88gol http://paperpile.com/b/iq80a1/88gol http://paperpile.com/b/iq80a1/88gol http://paperpile.com/b/iq80a1/88gol http://paperpile.com/b/iq80a1/88gol http://paperpile.com/b/iq80a1/88gol http://paperpile.com/b/iq80a1/88gol http://paperpile.com/b/iq80a1/szjvd http://paperpile.com/b/iq80a1/szjvd http://paperpile.com/b/iq80a1/szjvd http://paperpile.com/b/iq80a1/szjvd http://paperpile.com/b/iq80a1/szjvd http://paperpile.com/b/iq80a1/szjvd http://paperpile.com/b/iq80a1/szjvd http://paperpile.com/b/iq80a1/szjvd http://paperpile.com/b/iq80a1/szjvd http://paperpile.com/b/iq80a1/vxmms http://paperpile.com/b/iq80a1/vxmms http://paperpile.com/b/iq80a1/vxmms http://paperpile.com/b/iq80a1/vxmms http://paperpile.com/b/iq80a1/vxmms http://paperpile.com/b/iq80a1/vxmms https://pdfs.semanticscholar.org/976d/078d35218a91804c96976ffb38bb26da7217.pdf https://pdfs.semanticscholar.org/976d/078d35218a91804c96976ffb38bb26da7217.pdf http://paperpile.com/b/iq80a1/1bawk http://paperpile.com/b/iq80a1/1bawk http://paperpile.com/b/iq80a1/1bawk http://paperpile.com/b/iq80a1/1bawk http://paperpile.com/b/iq80a1/1bawk http://paperpile.com/b/iq80a1/1bawk http://paperpile.com/b/iq80a1/1bawk http://paperpile.com/b/iq80a1/1bawk http://paperpile.com/b/iq80a1/tqzbr http://paperpile.com/b/iq80a1/tqzbr http://paperpile.com/b/iq80a1/tqzbr http://paperpile.com/b/iq80a1/tqzbr http://paperpile.com/b/iq80a1/y36al http://paperpile.com/b/iq80a1/y36al http://paperpile.com/b/iq80a1/y36al http://paperpile.com/b/iq80a1/y36al http://paperpile.com/b/iq80a1/y36al http://paperpile.com/b/iq80a1/y36al https://www.bkconnection.com/books/title/right-relationship? https://www.bkconnection.com/books/title/right-relationship? http://paperpile.com/b/iq80a1/xupft http://paperpile.com/b/iq80a1/xupft http://paperpile.com/b/iq80a1/xupft http://paperpile.com/b/iq80a1/xupft http://paperpile.com/b/iq80a1/xupft http://paperpile.com/b/iq80a1/xupft http://paperpile.com/b/iq80a1/xupft http://paperpile.com/b/iq80a1/xupft http://paperpile.com/b/iq80a1/qivx8 http://paperpile.com/b/iq80a1/qivx8 http://paperpile.com/b/iq80a1/qivx8 http://paperpile.com/b/iq80a1/qivx8 http://paperpile.com/b/iq80a1/qivx8 http://paperpile.com/b/iq80a1/qivx8 http://paperpile.com/b/iq80a1/qivx8 http://paperpile.com/b/iq80a1/qivx8 http://paperpile.com/b/iq80a1/qivx8 http://paperpile.com/b/iq80a1/s4jvi http://paperpile.com/b/iq80a1/s4jvi http://paperpile.com/b/iq80a1/s4jvi http://paperpile.com/b/iq80a1/s4jvi http://paperpile.com/b/iq80a1/s4jvi http://paperpile.com/b/iq80a1/s4jvi http://paperpile.com/b/iq80a1/6zseq http://paperpile.com/b/iq80a1/6zseq http://paperpile.com/b/iq80a1/6zseq http://paperpile.com/b/iq80a1/6zseq http://paperpile.com/b/iq80a1/ztr1m http://paperpile.com/b/iq80a1/ztr1m http://paperpile.com/b/iq80a1/ztr1m http://paperpile.com/b/iq80a1/ztr1m http://paperpile.com/b/iq80a1/ztr1m http://paperpile.com/b/iq80a1/ztr1m http://paperpile.com/b/iq80a1/cqlar http://paperpile.com/b/iq80a1/cqlar http://paperpile.com/b/iq80a1/cqlar http://paperpile.com/b/iq80a1/cqlar https://books.google.com/books?hl=en&lr=&id=affssugoab4c&oi=fnd&pg=pa47&dq=daly+1977&ots=nhpglk3ejs&sig=cc6akmeehqp-mpekimmw5exxhea ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 93 =affssugoab4c&oi=fnd&pg=pa47&dq=daly+1 977&ots=nhpglk3ejs&sig=cc6akmeehqpmpekimmw5exxhea degrowth. (n.d.). degrowth. retrieved september 14, 2022, from https://degrowth.info/degrowth duguma, l., kamwilu, e., minang, p. a., nzyoka, j., & muthee, k. (2020). ecosystem-based approaches to bioenergy and the need for regenerative supply options for africa. sustainability: science practice and policy, 12(20), 8588. everett t, ishwaran m, ansaloni gp, rubin a. (2010). economic growth and the environment. defra evidence and analysis series, paper 2. available at: https://mpra.ub.unimuenchen.de/23585/1/mpra_paper_23585.p df fanning, a. l., o’neill, d. w., hickel, j., & roux, n. (2021). the social shortfall and ecological overshoot of nations. nature sustainability, 5(1), 26–36. fath, b. d., fiscus, d. a., goerner, s. j., berea, a., & ulanowicz, r. e. (2019). measuring regenerative economics: 10 principles and measures undergirding systemic economic health. global transitions, 1, 15–27. federici, s. (2018). re-enchanting the world: feminism and the politics of the commons. oakland: pm press. frank, a., & marsden, t. (2016). regional spatial planning, government and governance as recipe for sustainable development? in metropolitan ruralities (vol. 23, pp. 241–271). emerald group publishing limited. fullerton, j. (2015). regenerative capitalism, capital institute. fullerton, j. b. (2015). regenerative capitalism: how universal principles and patterns will shape our new economy. capital institute. fullerton j, lovins h. (2009). transforming finance and the regenerative economy. community wealth. available at: https://communitywealth.org/sites/clone.communitywealth.org/files/downloads/paper-fullertonlovins.pdf gaard, g., & gruen, l. (1993). ecofeminism: towards global justice and planetary health. society & nature, 2, 1–35. gill, s. r., & benatar, s. r. (2020). reflections on the political economy of planetary health. review of international political economy, 27(1), 167–190. goerner, s. j. (2019). the collapse of oligarchic capitalism and the rise of regenerative learning: how the science of energy systems clarifies what’s happening today and what comes next. world futures, 75(3), 135–162. glyn, a. (1990). marxist economics. in: eatwell, j., milgate, m., newman, p. (eds) marxian economics. the new palgrave. palgrave macmillan, london. https://doi.org/10.1007/978-1-349-20572-1_41 guinot, j. (2020). changing the economic paradigm: towards a sustainable business model. international journal of sustainable development and planning, 15(5), 603–610. haselsteiner, e., rizvanolli, b. v., villoria sáez, p., & kontovourkis, o. (2021). drivers and barriers leading to a successful paradigm shift toward regenerative neighborhoods. sustainability: science practice and policy, 13(9), 5179. hawken, p. (2004). natural capitalism: creating the next industrial revolution. langara college. hickel, j. (2019). the contradiction of the sustainable development goals: growth versus ecology on a finite planet. sustainable development, 27(5), 873-884. hill r, pert pl, davies j, robinson cr, walsh f, falcomammone f. (2013). indigenous land management in australia: extent, scope, diversity, barriers and success factors. csiro, australia. horton, r., beaglehole, r., bonita, r., raeburn, j., mckee, m., & wall, s. (2014). from public to planetary health: a manifesto. the lancet, 383(9920), 847. howson, p. (2021). distributed degrowth technology: challenges for blockchain beyond the green economy. ecological economics: the journal of the international society for ecological economics, 184, 107020. intergovernmental panel on climate change (2022). climate change 2022: impacts, adaptation and vulnerability. contribution of working group ii to the sixth assessment report of the intergovernmental panel on climate change [h.o. pörtner, d.c. roberts, m. tignor, e.s. poloczanska, k. mintenbeck, a. alegría, m. craig, s. langsdorf, s. löschke, v. möller, a. okem, b. rama (eds.)]. cambridge university press. cambridge university press, cambridge, https://books.google.com/books?hl=en&lr=&id=affssugoab4c&oi=fnd&pg=pa47&dq=daly+1977&ots=nhpglk3ejs&sig=cc6akmeehqp-mpekimmw5exxhea https://books.google.com/books?hl=en&lr=&id=affssugoab4c&oi=fnd&pg=pa47&dq=daly+1977&ots=nhpglk3ejs&sig=cc6akmeehqp-mpekimmw5exxhea https://books.google.com/books?hl=en&lr=&id=affssugoab4c&oi=fnd&pg=pa47&dq=daly+1977&ots=nhpglk3ejs&sig=cc6akmeehqp-mpekimmw5exxhea http://paperpile.com/b/iq80a1/02v2e http://paperpile.com/b/iq80a1/02v2e http://paperpile.com/b/iq80a1/02v2e https://degrowth.info/degrowth http://paperpile.com/b/iq80a1/mu3cj http://paperpile.com/b/iq80a1/mu3cj http://paperpile.com/b/iq80a1/mu3cj http://paperpile.com/b/iq80a1/mu3cj http://paperpile.com/b/iq80a1/mu3cj http://paperpile.com/b/iq80a1/mu3cj http://paperpile.com/b/iq80a1/mu3cj http://paperpile.com/b/iq80a1/mu3cj http://paperpile.com/b/iq80a1/mu3cj http://paperpile.com/b/iq80a1/voylm http://paperpile.com/b/iq80a1/voylm http://paperpile.com/b/iq80a1/voylm http://paperpile.com/b/iq80a1/voylm http://paperpile.com/b/iq80a1/voylm http://paperpile.com/b/iq80a1/voylm http://paperpile.com/b/iq80a1/voylm http://paperpile.com/b/iq80a1/voylm http://paperpile.com/b/iq80a1/wjt3v http://paperpile.com/b/iq80a1/wjt3v http://paperpile.com/b/iq80a1/wjt3v http://paperpile.com/b/iq80a1/wjt3v http://paperpile.com/b/iq80a1/wjt3v http://paperpile.com/b/iq80a1/wjt3v http://paperpile.com/b/iq80a1/wjt3v http://paperpile.com/b/iq80a1/wjt3v http://paperpile.com/b/iq80a1/wjt3v http://paperpile.com/b/iq80a1/cwjdu http://paperpile.com/b/iq80a1/cwjdu http://paperpile.com/b/iq80a1/cwjdu http://paperpile.com/b/iq80a1/cwjdu http://paperpile.com/b/iq80a1/cwjdu http://paperpile.com/b/iq80a1/cwjdu http://paperpile.com/b/iq80a1/cwjdu http://paperpile.com/b/iq80a1/4wwy4 http://paperpile.com/b/iq80a1/4wwy4 http://paperpile.com/b/iq80a1/4wwy4 http://paperpile.com/b/iq80a1/4wwy4 http://paperpile.com/b/iq80a1/ecprz http://paperpile.com/b/iq80a1/ecprz http://paperpile.com/b/iq80a1/ecprz http://paperpile.com/b/iq80a1/ecprz http://paperpile.com/b/iq80a1/ecprz http://paperpile.com/b/iq80a1/vdt06 http://paperpile.com/b/iq80a1/vdt06 http://paperpile.com/b/iq80a1/vdt06 http://paperpile.com/b/iq80a1/vdt06 http://paperpile.com/b/iq80a1/vdt06 http://paperpile.com/b/iq80a1/vdt06 http://paperpile.com/b/iq80a1/vdt06 http://paperpile.com/b/iq80a1/pknhl http://paperpile.com/b/iq80a1/pknhl http://paperpile.com/b/iq80a1/pknhl http://paperpile.com/b/iq80a1/pknhl http://paperpile.com/b/iq80a1/pknhl http://paperpile.com/b/iq80a1/pknhl http://paperpile.com/b/iq80a1/pknhl http://paperpile.com/b/iq80a1/pknhl http://paperpile.com/b/iq80a1/jzet4 http://paperpile.com/b/iq80a1/jzet4 http://paperpile.com/b/iq80a1/jzet4 http://paperpile.com/b/iq80a1/jzet4 http://paperpile.com/b/iq80a1/jzet4 http://paperpile.com/b/iq80a1/jzet4 http://paperpile.com/b/iq80a1/jzet4 http://paperpile.com/b/iq80a1/m2qlr http://paperpile.com/b/iq80a1/m2qlr http://paperpile.com/b/iq80a1/m2qlr http://paperpile.com/b/iq80a1/m2qlr http://paperpile.com/b/iq80a1/m2qlr http://paperpile.com/b/iq80a1/m2qlr http://paperpile.com/b/iq80a1/m2qlr http://paperpile.com/b/iq80a1/m2qlr http://paperpile.com/b/iq80a1/m2qlr http://paperpile.com/b/iq80a1/wnnht http://paperpile.com/b/iq80a1/wnnht http://paperpile.com/b/iq80a1/wnnht http://paperpile.com/b/iq80a1/wnnht http://paperpile.com/b/iq80a1/h05ja http://paperpile.com/b/iq80a1/h05ja http://paperpile.com/b/iq80a1/h05ja http://paperpile.com/b/iq80a1/h05ja http://paperpile.com/b/iq80a1/h05ja http://paperpile.com/b/iq80a1/h05ja http://paperpile.com/b/iq80a1/h05ja http://paperpile.com/b/iq80a1/h05ja http://paperpile.com/b/iq80a1/388fa http://paperpile.com/b/iq80a1/388fa http://paperpile.com/b/iq80a1/388fa http://paperpile.com/b/iq80a1/388fa http://paperpile.com/b/iq80a1/388fa http://paperpile.com/b/iq80a1/388fa http://paperpile.com/b/iq80a1/388fa http://paperpile.com/b/iq80a1/388fa http://paperpile.com/b/iq80a1/388fa ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 94 uk and new york, ny, usa iyer, h. s., deville, n. v., stoddard, o., cole, j., myers, s. s., li, h., elliott, e. g., jimenez, m. p., james, p., & golden, c. d. (2021). sustaining planetary health through systems thinking: public health’s critical role. ssm population health, 15, 100844. kadar, t., & kadar, m. (2020). sustainability is not enough: towards ai supported regenerative design. 2020 ieee international conference on engineering, technology and innovation (ice/itmc), 1–6. keesstra, s., mol, g., de leeuw, j., okx, j., molenaar, c., de cleen, m., & visser, s. (2018). soil-related sustainable development goals: four concepts to make land degradation neutrality and restoration work. land, 7(4), 133. lovins, h. (2016). needed: a better story. humanistic management journal, 1(1), 75–90. lovins h, fullerton j (2014). transforming finance and the regenerative economy. greenmoney journal; greenmoney. https://greenmoney.com/transformingfinance/ lyle, j. t. (1996). regenerative design for sustainable development. john wiley & sons. mair, s. (2020). neoliberal economics, planetary health, and the covid-19 pandemic: a marxist ecofeminist analysis. the lancet. planetary health, 4(12), e588–e596. mcphearson, t., m. raymond, c., gulsrud, n. et al. (2021). radical changes are needed for transformations to a good anthropocene. npj urban sustain 1, 5. https://doi.org/10.1038/s42949-021-00017-x morseletto, p. (2020). restorative and regenerative: exploring the concepts in the circular economy. journal of industrial ecology, 24(4), 763–773. naik, y., baker, p., ismail, s.a. et al. (2019). going upstream – an umbrella review of the macroeconomic determinants of health and health inequalities. bmc public health, 19(1678) https://doi.org/10.1186/s12889-019-7895-6 natural capital and ecosystem services. (2014, february 6). european environment agency. https://www.eea.europa.eu/soer/2015/europe /natural-capital-and-ecosystem-services ndn collective. (2020). indigenous regenerative economic principles. ndn collective, usa. o’neill, d. w., fanning, a. l., lamb, w. f., & steinberger, j. k. (2018). a good life for all within planetary boundaries. nature sustainability, 1(2), 88–95. ortiz wadgymar, a. (1994). neoliberal capitalism in the new world economy. international journal of politics, culture, and society, 8(2), 295-312. patnaik, p. (2017). neo-liberal capitalism and its crisis. international development economic associates. available at: https://www.networkideas.org/newsanalysis/2017/10/neo-liberal-capitalism/ perkins, s., & jessup, a. (2021). cybernetics, design and regenerative economics. technoetic arts, 19(1-2), 123–137. perrings,c. (2005). "economy and environment," cambridge books, cambridge university press, number 9780521020763, may. planetary health. (n.d.). planetary health alliance. retrieved september 13, 2022, from https://www.planetaryhealthalliance.org/plane tary-health pongsiri, m. j., gatzweiler, f. w., bassi, a. m., haines, a., & demassieux, f. (2017). the need for a systems approach to planetary health. the lancet. planetary health, 1(7), e257–e259. publications. (2017, june 12). rockefeller foundation economic council on planetary health. https://www.planetaryhealth.ox.ac.uk/publicat ions/ raworth, k. (2017). doughnut economics: seven ways to think like a 21st-century economist. chelsea green publishing. reed, b. (2007). shifting from “sustainability” to regeneration. building research and information,35(6), 674–680. rodale institute (n.d.). seven tendencies towards regeneration. available at: https://rodaleinstitute.org/wpcontent/uploads/7-tendenciesregeneration.pdf, sanford, c. (2020). the regenerative economic shaper perspective paper— part 1. the regenerative economy collaborative, medium. available at: https://medium.com/theregenerative-economy-collaborative/theregenerative-economic-shaper-perspectivepaper-part-1-8cd56d77f4b0 schmelzer, m. (2015). the growth paradigm: history, hegemony, and the contested making of economic growthmanship. routledge handbook http://paperpile.com/b/iq80a1/zhpxs http://paperpile.com/b/iq80a1/zhpxs http://paperpile.com/b/iq80a1/zhpxs http://paperpile.com/b/iq80a1/zhpxs http://paperpile.com/b/iq80a1/zhpxs http://paperpile.com/b/iq80a1/zhpxs http://paperpile.com/b/iq80a1/zhpxs http://paperpile.com/b/iq80a1/zhpxs http://paperpile.com/b/iq80a1/zhpxs http://paperpile.com/b/iq80a1/zhpxs http://paperpile.com/b/iq80a1/o6mrm http://paperpile.com/b/iq80a1/o6mrm http://paperpile.com/b/iq80a1/o6mrm http://paperpile.com/b/iq80a1/o6mrm http://paperpile.com/b/iq80a1/o6mrm http://paperpile.com/b/iq80a1/o6mrm http://paperpile.com/b/iq80a1/o6mrm http://paperpile.com/b/iq80a1/qgx5v http://paperpile.com/b/iq80a1/qgx5v http://paperpile.com/b/iq80a1/qgx5v http://paperpile.com/b/iq80a1/qgx5v http://paperpile.com/b/iq80a1/qgx5v http://paperpile.com/b/iq80a1/qgx5v http://paperpile.com/b/iq80a1/qgx5v http://paperpile.com/b/iq80a1/qgx5v http://paperpile.com/b/iq80a1/qgx5v http://paperpile.com/b/iq80a1/7gn7g http://paperpile.com/b/iq80a1/7gn7g http://paperpile.com/b/iq80a1/7gn7g http://paperpile.com/b/iq80a1/7gn7g http://paperpile.com/b/iq80a1/7gn7g http://paperpile.com/b/iq80a1/7gn7g http://paperpile.com/b/iq80a1/z0qwf http://paperpile.com/b/iq80a1/z0qwf http://paperpile.com/b/iq80a1/z0qwf http://paperpile.com/b/iq80a1/z0qwf http://paperpile.com/b/iq80a1/z0qwf https://greenmoney.com/transforming-finance/ https://greenmoney.com/transforming-finance/ http://paperpile.com/b/iq80a1/kxl7p http://paperpile.com/b/iq80a1/kxl7p http://paperpile.com/b/iq80a1/kxl7p http://paperpile.com/b/iq80a1/kxl7p http://paperpile.com/b/iq80a1/zvwxm http://paperpile.com/b/iq80a1/zvwxm http://paperpile.com/b/iq80a1/zvwxm http://paperpile.com/b/iq80a1/zvwxm http://paperpile.com/b/iq80a1/zvwxm http://paperpile.com/b/iq80a1/zvwxm http://paperpile.com/b/iq80a1/zvwxm http://paperpile.com/b/iq80a1/zvwxm http://paperpile.com/b/iq80a1/owxdo http://paperpile.com/b/iq80a1/owxdo http://paperpile.com/b/iq80a1/owxdo http://paperpile.com/b/iq80a1/owxdo http://paperpile.com/b/iq80a1/owxdo http://paperpile.com/b/iq80a1/owxdo http://paperpile.com/b/iq80a1/cv6kc http://paperpile.com/b/iq80a1/cv6kc http://paperpile.com/b/iq80a1/cv6kc https://www.eea.europa.eu/soer/2015/europe/natural-capital-and-ecosystem-services https://www.eea.europa.eu/soer/2015/europe/natural-capital-and-ecosystem-services http://paperpile.com/b/iq80a1/4wwfa http://paperpile.com/b/iq80a1/4wwfa http://paperpile.com/b/iq80a1/4wwfa http://paperpile.com/b/iq80a1/4wwfa http://paperpile.com/b/iq80a1/4wwfa http://paperpile.com/b/iq80a1/4wwfa http://paperpile.com/b/iq80a1/4wwfa http://paperpile.com/b/iq80a1/4wwfa http://paperpile.com/b/iq80a1/peuiu http://paperpile.com/b/iq80a1/peuiu http://paperpile.com/b/iq80a1/peuiu http://paperpile.com/b/iq80a1/peuiu http://paperpile.com/b/iq80a1/peuiu http://paperpile.com/b/iq80a1/peuiu http://paperpile.com/b/iq80a1/peuiu http://paperpile.com/b/iq80a1/qb9yd http://paperpile.com/b/iq80a1/qb9yd http://paperpile.com/b/iq80a1/qb9yd https://www.planetaryhealthalliance.org/planetary-health https://www.planetaryhealthalliance.org/planetary-health http://paperpile.com/b/iq80a1/stdq4 http://paperpile.com/b/iq80a1/stdq4 http://paperpile.com/b/iq80a1/stdq4 http://paperpile.com/b/iq80a1/stdq4 http://paperpile.com/b/iq80a1/stdq4 http://paperpile.com/b/iq80a1/stdq4 http://paperpile.com/b/iq80a1/stdq4 http://paperpile.com/b/iq80a1/stdq4 http://paperpile.com/b/iq80a1/ld6pq http://paperpile.com/b/iq80a1/ld6pq http://paperpile.com/b/iq80a1/ld6pq https://www.planetaryhealth.ox.ac.uk/publications/ https://www.planetaryhealth.ox.ac.uk/publications/ http://paperpile.com/b/iq80a1/8sspx http://paperpile.com/b/iq80a1/8sspx http://paperpile.com/b/iq80a1/8sspx http://paperpile.com/b/iq80a1/8sspx http://paperpile.com/b/iq80a1/8sspx http://paperpile.com/b/iq80a1/n34hr http://paperpile.com/b/iq80a1/n34hr http://paperpile.com/b/iq80a1/n34hr http://paperpile.com/b/iq80a1/n34hr http://paperpile.com/b/iq80a1/n34hr http://paperpile.com/b/iq80a1/n34hr http://paperpile.com/b/iq80a1/n34hr https://rodaleinstitute.org/wp-content/uploads/7-tendencies-regeneration.pdf https://rodaleinstitute.org/wp-content/uploads/7-tendencies-regeneration.pdf https://rodaleinstitute.org/wp-content/uploads/7-tendencies-regeneration.pdf http://paperpile.com/b/iq80a1/n34hr http://paperpile.com/b/iq80a1/iv9nu http://paperpile.com/b/iq80a1/iv9nu http://paperpile.com/b/iq80a1/iv9nu http://paperpile.com/b/iq80a1/iv9nu http://paperpile.com/b/iq80a1/iv9nu http://paperpile.com/b/iq80a1/iv9nu ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 95 of the history of sustainability. https://doi.org/10.4324/978131554301712/growth-paradigm-matthias-schmelzer schumacher. (1973). small is beautiful: economics as if people mattered. london: blond & briggs. http://www.lonergan.org/wpcontent/uploads/2021/02/schumacherchapter-9.pdf sheldon, p. j. (2021). the coming-of-age of tourism: embracing new economic models. journal of tourism futures, 8(2), 200–207. sheldon, p. j. (2022). the coming-of-age of tourism: embracing new economic models. in journal of tourism futures (vol. 8, issue 2, pp. 200–207). https://doi.org/10.1108/jtf-03-2021-0057 sheller, m. (2021). reconstructing tourism in the caribbean: connecting pandemic recovery, climate resilience and sustainable tourism through mobility justice. journal of sustainable tourism, 29(9), 1436–1449. shiva, v. (2016). staying alive: women, ecology and development, 3rd edn. berkeley: north atlantic. solón, p. (2018). vivir bien: old cosmovisions and new paradigms. great transition initiative. available at: http://greattransition.org/publication/vivirbien. sonetti, g., brown, m., & naboni, e. (2019). about the triggering of un sustainable development goals and regenerative sustainability in higher education. sustainability: science practice and policy, 11(1), 254. stahel, walter r. and reday-mulvey, geneviève (1981) jobs for tomorrow, the potential for substituting manpower for energy; vantage press, new york, n.y.. isbn 533-04799-4. steinberger, j. (2021). living well within planetary limits: is it possible? and what will it take? forum for macroeconomics and macroeconomic policies. available at: https://www.boeckler.de/pdf/v_2021_10_30_s teinberger.pdf sulis, f., agostinho, f., almeida, c. m. v. b., & giannetti, b. f. (2021). recognizing the wealth of non-marketable food in distribution centres: the environmental benefits of donation. journal of cleaner production, 318, 128482. te tai ōhanga new zealand. (2019). the wellbeing budget 2019. new zealand treasury. available at: https://www.treasury.govt.nz/publications/wel lbeing-budget/wellbeing-budget-2019-html thomas, j., & harden, a. (2008). methods for the thematic synthesis of qualitative research in systematic reviews. bmc medical research methodology, 8, 45. tricco, a. c., lillie, e., zarin, w., o’brien, k. k., colquhoun, h., levac, d., moher, d., peters, m. d. j., horsley, t., weeks, l., hempel, s., akl, e. a., chang, c., mcgowan, j., stewart, l., hartling, l., aldcroft, a., wilson, m. g., garritty, c., … straus, s. e. (2018). prisma extension for scoping reviews (prisma-scr): checklist and explanation. annals of internal medicine, 169(7), 467–473. united frontline table. (2020). a people’s orientation to a regenerative economy: protect, repair, invest and transform. united frontline table, usa. united health futures. systems thinking & planetary health. (2021, november 1). united health futures. https://uhf.ch/project/systemsthinking-planetary-health/ vineis, p., & mangone, l. (2022). the need for new metrics in the anthropocene era. frontiers in public health, 10, 935743. viruega sevilla, d., francisco lópez, a., & bello bugallo, p. m. (2022). the role of a hazardous waste intermediate management plant in the circularity of products. sustainability: science practice and policy, 14(3), 1241. wellbeing economy alliance (n.d). wellbeing economy policy design guide. wellbeing economy alliance. available at: https://weall.org/wpcontent/uploads/wellbeing-economy-policydesign-guide_mar12_final.pdf who council on the economics of health for all. (2022). valuing health for all. rethinking and building a whole-of-society approach. council brief no.3. march 2022. world health organisation. yesodharan, v., weiyu, f., almuala, z. a., heckenauer barrón, e. g., faraji abdolmaleki, s., fernández rodríguez, j. j., & bello bugallo, p. m. (2022). natural security games in the regenerative economy: a review. gaming, simulation and innovations: challenges and opportunities, 280–287. http://paperpile.com/b/iq80a1/iv9nu http://paperpile.com/b/iq80a1/iv9nu http://paperpile.com/b/iq80a1/iv9nu http://dx.doi.org/10.4324/9781315543017-12/growth-paradigm-matthias-schmelzer http://dx.doi.org/10.4324/9781315543017-12/growth-paradigm-matthias-schmelzer http://paperpile.com/b/iq80a1/swmv6 http://paperpile.com/b/iq80a1/swmv6 http://paperpile.com/b/iq80a1/swmv6 http://paperpile.com/b/iq80a1/swmv6 http://paperpile.com/b/iq80a1/swmv6 http://paperpile.com/b/iq80a1/swmv6 http://paperpile.com/b/iq80a1/swmv6 http://www.lonergan.org/wp-content/uploads/2021/02/schumacher-chapter-9.pdf http://www.lonergan.org/wp-content/uploads/2021/02/schumacher-chapter-9.pdf http://www.lonergan.org/wp-content/uploads/2021/02/schumacher-chapter-9.pdf http://paperpile.com/b/iq80a1/g0llm http://paperpile.com/b/iq80a1/g0llm http://paperpile.com/b/iq80a1/g0llm http://paperpile.com/b/iq80a1/g0llm http://paperpile.com/b/iq80a1/g0llm http://paperpile.com/b/iq80a1/g0llm http://paperpile.com/b/iq80a1/g0llm http://paperpile.com/b/iq80a1/qchb5 http://paperpile.com/b/iq80a1/qchb5 http://paperpile.com/b/iq80a1/qchb5 http://paperpile.com/b/iq80a1/qchb5 http://paperpile.com/b/iq80a1/qchb5 http://paperpile.com/b/iq80a1/qchb5 http://dx.doi.org/10.1108/jtf-03-2021-0057 http://paperpile.com/b/iq80a1/026bd http://paperpile.com/b/iq80a1/026bd http://paperpile.com/b/iq80a1/026bd http://paperpile.com/b/iq80a1/026bd http://paperpile.com/b/iq80a1/026bd http://paperpile.com/b/iq80a1/026bd http://paperpile.com/b/iq80a1/026bd http://paperpile.com/b/iq80a1/026bd http://paperpile.com/b/iq80a1/026bd http://paperpile.com/b/iq80a1/yugjn http://paperpile.com/b/iq80a1/yugjn http://paperpile.com/b/iq80a1/yugjn http://paperpile.com/b/iq80a1/yugjn http://paperpile.com/b/iq80a1/yugjn http://paperpile.com/b/iq80a1/yugjn http://paperpile.com/b/iq80a1/yugjn http://paperpile.com/b/iq80a1/yugjn http://paperpile.com/b/iq80a1/yugjn http://paperpile.com/b/iq80a1/yza8j http://paperpile.com/b/iq80a1/yza8j http://paperpile.com/b/iq80a1/yza8j http://paperpile.com/b/iq80a1/yza8j http://paperpile.com/b/iq80a1/yza8j http://paperpile.com/b/iq80a1/yza8j http://paperpile.com/b/iq80a1/yza8j http://paperpile.com/b/iq80a1/yza8j http://paperpile.com/b/iq80a1/ccctw http://paperpile.com/b/iq80a1/ccctw http://paperpile.com/b/iq80a1/ccctw http://paperpile.com/b/iq80a1/ccctw http://paperpile.com/b/iq80a1/ccctw http://paperpile.com/b/iq80a1/ccctw http://paperpile.com/b/iq80a1/ccctw http://paperpile.com/b/iq80a1/ccctw http://paperpile.com/b/iq80a1/ccctw http://paperpile.com/b/iq80a1/ccctw http://paperpile.com/b/iq80a1/ccctw http://paperpile.com/b/iq80a1/ccctw http://paperpile.com/b/iq80a1/ccctw http://paperpile.com/b/iq80a1/3mecg http://paperpile.com/b/iq80a1/3mecg http://paperpile.com/b/iq80a1/3mecg http://paperpile.com/b/iq80a1/3mecg https://uhf.ch/project/systems-thinking-planetary-health/ https://uhf.ch/project/systems-thinking-planetary-health/ http://paperpile.com/b/iq80a1/amzcc http://paperpile.com/b/iq80a1/amzcc http://paperpile.com/b/iq80a1/amzcc http://paperpile.com/b/iq80a1/amzcc http://paperpile.com/b/iq80a1/amzcc http://paperpile.com/b/iq80a1/amzcc http://paperpile.com/b/iq80a1/amzcc http://paperpile.com/b/iq80a1/yry03 http://paperpile.com/b/iq80a1/yry03 http://paperpile.com/b/iq80a1/yry03 http://paperpile.com/b/iq80a1/yry03 http://paperpile.com/b/iq80a1/yry03 http://paperpile.com/b/iq80a1/yry03 http://paperpile.com/b/iq80a1/yry03 http://paperpile.com/b/iq80a1/yry03 http://paperpile.com/b/iq80a1/yry03 http://paperpile.com/b/iq80a1/boa5i http://paperpile.com/b/iq80a1/boa5i http://paperpile.com/b/iq80a1/boa5i http://paperpile.com/b/iq80a1/boa5i http://paperpile.com/b/iq80a1/boa5i http://paperpile.com/b/iq80a1/boa5i http://paperpile.com/b/iq80a1/boa5i http://paperpile.com/b/iq80a1/boa5i http://paperpile.com/b/iq80a1/boa5i ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 96 figure 1. prisma flow diagram of search ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 97 table 1. summary characteristics of included articles title authors year country type method focus revisiting the missing link: an ecological theory of money for a regenerative economy alves et al. 2022 portugal peer reviewed article transdisciplinary literature review rethinking money for regenerative futures: new economic and monetary paradigms that address the root causes of unsustainability a comprehensive assessment of the method for producing biochar, its characterization, stability, and potential applications in regenerative economic sustainability – a review amalina et al. 2022 malaysia peer reviewed article. literature review biochar production and how it contributes to regenerative economies re-commerce to ensure circular economy from consumer perspective arman & markherbert 2021 sweden peer reviewed article literature review and focus group study of bangladeshi consumers recommerce on facebook in bangladesh transforming the (tourism) world for good and (re)generating the potential ‘new normal’ ateljevic 2022 croatia academic commentary commentary the vision of connecting regenerative agriculture and transformative tourism is offered to reset the global tourism system for good. covid-19 and the emergency of new economies for the design of a new world barauna et al 2021 brazil peer reviewed article strategy analysis and comparative framework of four economies summary of new economics principles and practice emerging from covid-19 crisis urban river recovery inspired by nature-based solutions and biophilic design in albufeira, portugal blau et al. 2018 germany peer reviewed article case study with study site analysed by the science of strolling urban river recovery inspired by regenerative economics ecological economics foundations to improve environmental education practices: designing regenerative cultures* collado-ruano & segovia sarmiento 2022 ecuador peer reviewed article and review qualitative review of 51 papers the sustainable development goals (sdgs) are questioned for their conventional economic vision, and regenerative cultures are proposed to promote world futures focused on human well-being and environmental justice. https://paperpile.com/c/iq80a1/oexgg https://paperpile.com/c/iq80a1/4dri5 https://paperpile.com/c/iq80a1/88gol https://paperpile.com/c/iq80a1/88gol ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 98 ecosystem-based approaches to bioenergy and the need for regenerative supply options for africa duguma et al. 2020 kenya peer reviewed article quantitative study drawing on secondary data sources estimating the ecosystem’s role in supplying energy, mostly in sub-saharan africa measuring regenerative economics: 10 principles and measures undergirding systemic economic health fath et al. 2019 usa peer reviewed article conceptual paper applying energy network science to aid the process of understanding and implementing the rules of regenerative economics regional spatial planning, government and governance as recipe for sustainable development? frank & marsden 2016 uk book chapter book chapter. case study of stuttgart (germany) city and urban planning: framing regions as socioecological rather than mere socioeconomic spaces, thereby placing greater emphasis on ecosystems and ecological land management and a circular, regenerative economy regenerative capitalism fullerton, 2015 2015 usa white paper summary/ conceptual paper making a case for regenerative capitalism the collapse of oligarchic capitalism and the rise of regenerative learning: how the science of energy systems clarifies what’s happening today and what comes next goerner 2019 scotland peer reviewed article conceptual paper applies the science of energy systems to economic reformation and political challenges changing the economic paradigm: towards a sustainable business model guinot 2020 spain peer reviewed article case studies sustainable business models: adopting the principles of circular and regenerative economy and taking environmental responsibility are a hallmark of the companies which are contributing to a more sustainable development drivers and barriers leading to a successful paradigm shift toward regenerative neighborhoods haselsteiner, et al. 2021 austria peer reviewed article literature review and quantitative data analysis regenerative sustainability principles in the built environment, including drivers and barriers faced during the implementation of regenerative principles in the built environment; and identifying gaps in the paradigm shift towards regenerative districts and macro-level projects ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 99 natural capitalism: creating the next industrial revolution hawken 1999 usa book n/a based on the principle that businesses can be good for the environment, "natural capitalism" shows how leading-edge companies are practicing "a new type of industrialism" that is both more efficient and more profitable, while simultaneously protecting the planet and creating jobs. distributed degrowth technology: challenges for blockchain beyond the green economy howson 2021 uk commentar y commentary this commentary considers the challenges and trade-offs in using blockchain as the facilitating digital infrastructure for degrowth projects. blockchain needs to overcome challenges, in: 1) building democratic and (re)distributive economies, 2) regenerating the environment without commodifying it, and 3) facilitating international alliances without imposing a particular set of values. needed: a better story lovins 2016 usa peer reviewed article conceptual piece corporate and leadership solutions that can craft a new story of an economy that works for 100% of humanity transforming finance and the regenerative economy lovins & fullerton 2014 usa web article web article. conceptual piece finance in general and specifically the flow of real investment capital is one of the critical leverage points to shift to a regenerative economy that serves humanity and stewards the integrity of earth’s ecosystems. sustainability is not enough: towards ai supported regenerative design kadar & kadar, 2020 2020 uk conference paper conference paper. case studies and conceptual piece this paper presents some examples of biomimicry in circular design and proposes techniques that integrate data science and artificial intelligence (ai) as tools to accelerate the transition towards the regenerative approach. soil-related sustainable development goals: four concepts to make land degradation neutrality and restoration work keesstra et al. 2018 the netherlands peer reviewed article conceptual piece land degradation neutrality and restoration work. to avoid further land degradation and promote land restoration, multifunctional use of land is needed within the boundaries of the soil-water system. the attainment of a balance between the economy, society, and the biosphere calls for a holistic approach. ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 100 regenerative design for sustainable development lyle 1996 usa book book production cycles based on a one-way flow of materials and energy have pushed us to the brink of environmental collapse: this book provides civil engineers, architects, land development planners, and others with practical, realistic approaches and proven regenerative practices for water use, land use, energy use, and building design. restorative and regenerative: exploring the concepts in the circular economy morseletto 2020 the netherlands peer reviewed article literature review definition of restoration and regeneration in circular economics: unlike regeneration, restoration can be considered a core principle because it has widespread application and can be a point of reference for circular applications. cybernetics, design and regenerative economics perkins & jessup, 2021 usa peer reviewed article conceptual piece cybernetics and regenerative economics. humanity will likely make outstanding technological progress, explore space or merge with artificial intelligence ‐ but appreciating nature’s technology provided to humanity through eons evolution, and avoiding short-term self-destruction, should be priorities. the coming-of-age of tourism: embracing new economic models sheldon 2021 usa peer reviewed article conceptual piece, with a review of six progressive economic models. re-examine the economic models and assumptions that have given rise to current day tourism, for the greater good / to help solve systemic crises. reconstructing tourism in the caribbean: connecting pandemic recovery, climate resilience and sustainable tourism through mobility justice sheller, 2021 2021 usa peer reviewed article concpetual piece this article seeks to identify ways beyond tourism in which caribbean small island states and nonindependent territories might rebuild more sustainable ecologies and economies about the triggering of un sustainable development goals and regenerative sustainability in higher education sonetti et al. 2019 italy peer reviewed article conceptual piece outlines the context in which universities can collaborate and contribute to triggering sustainability values, attitudes, and behavior within future regenerative societies. recognizing the wealth of nonmarketable food in distribution centres: the environmental benefits of donation sulis et al. 2021 brazil peer reviewed article conceptual piece circular economy and food donation applies the life cycle assessment method to evaluate the environmental impacts of plausible food donation scenarios in the ‘ceagesp’ food distribution center ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 101 in são paulo city, brazil the need for new metrics in the anthropocene era vineis & mangone 2022 uk peer reviewed article conceptual piece the environmental, social and governance (esg) ratings for bonds suffers from a lack of transparency and standardization. new metrics focusing on at least four dimensions: circularity, climate change, biodiversity, and health (including well-being), can support a more inclusive approach, to highlight the potential co-benefits of different strategies, especially those that promote regeneration and a truly circular economy. the role of a hazardous waste intermediate management plant in the circularity of products viruega sevilla et al. 2022 spain peer reviewed article case study, qualitative analysis, and impact assessment redesign plan for an industrial system that includes mechanical workshops and a hazardous waste intermediate management plant, covering all management activities (both off-site and on-site), such as collection, transport, and treatment natural security games in the regenerative economy: a review yesodharan et al. 2022 spain conference paper conference paper. literature review simulation games play a vital role in building a sustainable world. this study investigates the games for topics like natural security, energy security, carbon capture and storage, renewable energy, and waste. the paper points out the importance of natural security and the need to develop more games in natural security and its related fields to build a regenerative economy. ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 102 figure 2. focus areas of included articles ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 103 figure 3. principles and practices of regenerative economics source: authors ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 104 figure 4. case example box 1. example use-cases of regenerative economics for planetary health better relationship to self ● inspired by biophilic ideas, transformative learning theories, and participatory evaluation, indicare is an evaluation framework that seeks an eco-centric and integrative approach toward our inner being, the earth and its communities (sonetti et al., 2019). ● eat-lancet guidelines, a nutritional guide termed a “diet for the anthropocene” (vineis & mangone, 2022) ● microbiome research outlining the relationship between human biome, health, food systems (including soil) and the biosphere (ateljevic, 2020) better relationship to others ● vizinho do bem ('good neighbor') app: a collaborative network to support elderly, quarantined and others who need help during the pandemic (barauna et al.,2021). ● transition town network (over 1200 transition initiatives globally, working to increase self-sufficiency to reduce the potential effects of peak oil and economic instability) and the global ecovillage network (15,000 ecovillages around the world: communities consciously designed through locally owned participatory processes across social, culture, ecology, and economy sustainability to regenerate social and natural environments.) (ateljevic, 2020) ● new forms of localised democratic governance facilitated by blockchain technology such as democracy.earth, a censorship-resistant, open-source platform for decision-making, and faircoin, supporting a network of localised community economies (balaguer rasillo, 2020 in (howson, 2021)). better relationship with nature and the environment ● the permaculture movement (3 million practitioners globally) (ateljevic, 2020) ● a river restoration project that naturally tells the history of the city, creates a sense of place, and unifies blue–green infrastructure in a symbolic way by offering areas for recreation (blau et al., 2018). https://paperpile.com/c/iq80a1/yugjn https://paperpile.com/c/iq80a1/vxmms https://paperpile.com/c/iq80a1/388fa https://paperpile.com/c/iq80a1/xupft ihtp, 2(3), si: 81-105, 2022 cc by-nc-nd 4.0 issn 2563-9269 105 ● regenerative cities, embracing the dual aims of (i) developing an environmentally enhancing relationship between cities and the natural systems whose resources they depend upon and (ii) fostering urban communities where people benefit from this process (frank & marsden, 2016). ● the hawaiian islands are strategizing a more mature, post-pandemic tourism based on native hawaiian values such as malama (caring) and kuleana (responsibility) (sheldon, 2021) ● disaster reconstruction in the caribbean centering food sovereignty, agroecology, and regenerative economies, as promoted by community-based organizations and people’s assemblies (sheller, 2021). ● companies adopting regenerative or circular design models. zero-waste manufacturing, selling services instead of products (e.g., providing computer printing services instead of printers) or refurbishing and reselling own-brand products. for example, clothing brand patagonia (guinot, 2020). ● new metrics to capture the health and regenerative impact of environmental, social and governance (esg) bonds across at least four dimensions: circularity, climate. change, biodiversity, and health (including well-being). (vineis & mangone, 2022) https://paperpile.com/c/iq80a1/cwjdu https://paperpile.com/c/iq80a1/g0llm https://paperpile.com/c/iq80a1/026bd https://paperpile.com/c/iq80a1/jzet4 ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 240 tele-rehabilitation interventions for individuals living with dementia during the covid-19 pandemic: mixed-method systematic review thilanka jagoda1, sarath rathnayake2 1department of nursing & midwifery, university of sri jayewardenepura, nugegoda, sri lanka; 2department of nursing, university of peradeniya, peradeniya, sri lanka corresponding author: t. jagoda (thilanka@sjp.ac.lk) abstract background: considering covid-19, individuals living with dementia are more vulnerable, and tele-rehabilitation can be incorporated into dementia care. objective: to analyse the evidence of the availability and effectiveness of tele-rehabilitation interventions for individuals living with dementia in the community during the covid-19 pandemic. methods: a mixed-method systematic review was conducted. cochrane, proquest, pubmed and google scholar databases were searched using keywords that include dementia, tele-rehabilitation, and covid-19. article quality was assessed using the mixed methods appraisal tool. results: thirteen articles were included. finding suggest, most tele-interventions were being implemented in european and high-income countries. these interventions included: videoconferences, telephone-based interventions, television-based assistive technology, and human-robot. conclusion: despite the lack of rigorous studies, tele-rehabilitation is effective in improving cognition, behavioural and psychological symptoms, quality of life, and social connectedness. rigorous methodologies, i.e., randomised control trials, are recommended. keywords covid-19; dementia; telehealth; telerehabilitation introduction covid-19 is an infectious disease caused by a virus, known as sars-cov-2 (lópez et al., 2021; world health organisation [who], 2022). this virus is spread by droplets and aerosols produced by infected people (who, 2022). social distancing to reduce covid-19 transmission leads to social isolation and loneliness (gorenko et al., 2021) that negatively impact on the physical and psychological status of individuals living with dementia (barros et al., 2020). these negative impacts included a decline in communication and mood, changes in cognition, worsening behavioural and psychological symptoms and functional ability (suarez-gonzalez et al., 2021; tsapanou et al., 2021). dementia is a progressive syndrome characterised by the deterioration of mental capacity that limits daily functioning (gale et al., 2018; iadecola et al., 2019) and has been identified as a worldwide health priority (iadecola et al., 2019). with significant negative consequences of covid-19 on dementia (barros et al., 2020), rehabilitation is a priority for individuals living with dementia (mantovani et al., 2020), which enables better living by slowing the progression and relieving behavioural and psychological symptoms of dementia (bpsd) (maki et al., 2018). social distance increases the need for remote healthcare delivery for the community-dwelling people (temesgen et al., 2020), and tele-health has an essential role in supporting individuals living with dementia living in the community (mantovani et al., 2020). tele-health facilitates health services from a distance through information and communication technologies, including computers, cell phones and the internet (who, 2010), and consists of texting, phone calls, web-based applications, multimedia interventions, virtual reality, electronic health records, mobile games, robots, and drones (choi & paik, 2018; laver et al., 2020; peretti et al., 2017; who, 2010). tele-rehabilitation refers to “the ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 241 delivery of rehabilitation and habilitation services via information and communication technologies” (richmond et al., 2017) and includes evaluation, assessment, monitoring, prevention, intervention, supervision, education, consultation and coaching via those technologies (richmond et al., 2017). but, limited evidence is available concerning telerehabilitation interventions delivered for individuals living with dementia affected by the covid-19 pandemic (di lorito et al., 2021; mantovani et al., 2020; panerai et al., 2021). therefore, further investigation is needed to determine and assess the available rehabilitation interventions for individuals living with dementia during the covid-19 pandemic. this systematic review aimed to identify the available tele-rehabilitation interventions and assess their effectiveness in the context of individuals living with dementia living in the community during the covid-19 crisis. research questions the review questions were: (1) what are the available tele-rehabilitation interventions for individuals living with dementia living in the community during the covid-19 pandemic? (2) what is the effectiveness of tele-rehabilitation interventions on individuals living with dementia living in the community during the covid-19 pandemic? methods study design this study was a mixed-method systematic review combining quantitative and qualitative findings in a single review (joanna briggs institute, 2014). the “preferred reporting for systematic review and meta-analysis 2020” (prisma-2020) guideline (page et al., 2021) was used. the review protocol was registered on prospero: international prospective register of systematic reviews site (registration id: crd42021254565). search strategies cochrane library, proquest, pubmed, and google scholar databases were searched from 12.05.2021 to 20.05.2021. the literature search was updated between 02.07.2022 and 08.07.2022. hand searches in the reference lists of the included studies and review articles yielded additional studies. literature indicates that google scholar covers 97.2% of search results (bramer et al., 2016) and medline with reference list checking covers 93.7% (goossen et al., 2020), including articles from academic journals covering medicine, nursing, pharmacy, dentistry, veterinary medicine, and health care. pubmed is a broad database that provides articles from several databases, including articles before or during medline indexing and non-indexed articles under "supplied by publisher" (theander, 2006). proquest allows searching multiple databases simultaneously, including public health, allied health, and nursing studies. cochrane library includes randomised control trials and systematic reviews that help to identify related studies. three concept categories were reviewed: “dementia”, “telerehabilitation”, and “covid-19”. eligibility criteria the current review was based on the peerreviewed articles published in english from 2019 to date. covid-19 was first reported in 2019. the included interventional studies were quantitative studies, qualitative studies, mixed-method studies, feasibility studies, and pilot studies. the inclusion criteria for the concepts of the current review were chosen according to the “problem/ patient/ population, intervention, comparison, and outcome” (pico) framework for quantitative studies and “population, phenomena of interest and context” (pico) framework for qualitative studies (theander, 2006). studies were included if 1) the population was individuals living with dementia, 2) the intervention was telerehabilitation intervention, 3) studies were conducted during the covid-19 pandemic, and 4) the context was community-dwelling individuals living with dementia. the interventions that focused only on caregivers were excluded. the primary outcomes in this review were 1) reporting the available tele-rehabilitation interventions and 2) their effectiveness. the availability of intervention was reported based on the type of interventions, type of technology and the purpose of the rehabilitation. type of interventions concerned were pharmacological and nonpharmacological interventions (chang et al., 2018; d'onofrio et al., 2016). their effectiveness was measured based on the changes in variables between pre-intervention and post-interventions or between interventional groups and control groups, or as a ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 242 comparison among two technologies for the same intervention. the variables determining the effectiveness included cognition, behaviours, neuropsychiatric symptoms, activity level, communication, well-being, and quality of life (qol). the additional outcomes of the current review were user acceptance and satisfaction with tele-rehabilitation. data screening, extraction, and quality assessment the first reviewer retrieved the studies and removed duplicates using endnote x7.1 reference management software. two reviewers reviewed 10% of titles and abstracts, and the first reviewer continued the screening. two reviewers then independently screened full-text studies. the relevancy was judged using a 5-point likert scale ranging from 1 (not at all relevant) to 5 (extremely relevant) (hong et al., 2019). “extremely relevant” and “very relevant” articles were grouped as “relevant”, and cohen’s kappa inter-rater agreement was calculated (mchugh, 2012). disagreements were resolved at a consensus meeting. reasons for excluding the articles were recorded. two reviewers independently appraised the quality of the included studies using the mixed methods appraisal tool (mmat) (hong et al., 2018). differences were resolved by consensus agreement. studies with low mmat scores were not excluded because of their high information value and contributed to an in-depth understanding of the telerehabilitation interventions during the covid-19 crisis. the two reviewers developed an abstraction template and a data dictionary, including study identification data, aims of the study, population characteristics, intervention characteristics, quality assessment, outcomes, results, and limitations. the first reviewer extracted the data, and the second reviewer checked for accuracy. data synthesis and analysis data were synthesised narratively concerning designs and study outcomes. quantitative outcomes and qualitative outcomes were synthesised separately and then merged to interpret (joanna briggs institute, 2014). a meta-analysis was not possible due to the heterogeneity of the studies included. results study selection the flow of study selection was illustrated in figure 1, along with the reasons for study exclusion. the database searches yielded 638 articles. duplicates were removed (n=67). title/abstract screening resulted in 98 sources for full-text screening. of the selected 98 sources, one article was unobtainable. a moderate inter-rater agreement (kappa, 0.69) was exhibited in full-text screening by independent reviewers (mchugh, 2012). finally, 13 primary studies were selected for the current review. screening of hand searches and snowballing yielded 20 full texts, and none were chosen for the current review as they were not meeting the inclusion criteria. study characteristics studies were conducted in the covid-19 era and published in 2020 and 2022. geographically, nine were conducted in european countries: italy (n=4) (arighi et al., 2021; capozzo et al., 2020; gareri et al., 2022; panerai et al., 2021), spain (n=3) (benaque et al., 2020; dura-perez et al., 2022; goodmancasanova et al., 2020), canada (n=1) (vellani et al., 2022), and the united kingdom (n=1) (di lorito et al., 2021). three were found in asian countries: hong kong (lai et al., 2020), india (lima et al., 2021) and taiwan (lai et al., 2022). the study conducted in india was an extension of the work conducted in the united kingdom (lima et al., 2021). one was intervened in brazil (brandão et al., 2021). there were different interventional study designs, including randomised control trial (goodmancasanova et al., 2020), pretest-posttest interventional design (lai et al., 2020; lai et al., 2022), nonrandomised interventional comparison design (panerai et al., 2021), interventional qualitative study (di lorito et al., 2021), cohort study (dura-perez et al., 2022), feasibility study (brandão et al., 2021), pilot study (vellani et al., 2022) and other preexperimental designs (arighi et al., 2021; benaque et al., 2020; capozzo et al., 2020; gareri et al., 2022). five were mixed‐method studies (brandão et al., 2021; capozzo et al., 2020; dura-perez et al., 2022; goodman-casanova et al., 2020; vellani et al., 2022). lima et al. (2021) focused on an intervention development study (i.e., a human-robotic) consisting of three phases: developing, designing and pilot testing. concerning the sample characteristics, seven studies were conducted on individuals living with dementia or mild cognitive impairments (arighi et al., ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 243 2021; benaque et al., 2020; dura-perez et al., 2022; gareri et al., 2022; goodman-casanova et al., 2020; lai et al., 2022; vellani et al., 2022). caregivers had participated in five studies (capozzo et al., 2020; di lorito et al., 2021; lai et al., 2020; lai et al., 2022; panerai et al., 2021). caregivers with their trusted individuals (family or friends) participated in one study (vellani et al., 2022). one study recruited individuals living with dementia and healthy older adults in the designing phase, while one person with dementia participated in the testing phase (lima et al., 2021). brandão et al. (2021) recruited older adults, including individuals living with aphasia and dementia. only one study included people with a specific type of dementia, i.e., frontotemporal dementia (ftd), and most of the interviews were carried out with caregivers (n=28), while four were carried out with patients and caregivers together (capozzo et al., 2020). the sample size of individuals living with dementia ranged from one to 350. the average age of participants ranged from 65 to 83 years. the detailed study characteristics can be found in table 2. quality appraisal only three studies showed a score of 4 (brandão et al., 2021; panerai et al., 2021) or 5 (di lorito et al., 2021) out of five in the mmat, and others received 1 or 2 or 3 scores (table 2). moreover, only a few studies in the current review reported aim(s)/ research problem(s), and none reported a theoretical background. tele-rehabilitation interventions this review did not find any tele-rehabilitation based pharmacological interventions during the covid-19 period for individuals living with dementia. reported non-pharmacological interventions were cognitive interventions (brandão et al., 2021; goodman-casanova et al., 2020; panerai et al., 2021), sensory stimulation interventions (brandão et al., 2021; di lorito et al., 2021; goodman-casanova et al., 2020), social interventions (brandão et al., 2021), educational interventions (lai et al., 2022; vellani et al., 2022) and assistive technology interventions (lima et al., 2021). cognitive interventions included reality orientation therapy (rot) and memory games (arighi et al., 2021; goodman-casanova et al., 2020). for sensory stimulation, activity therapies had been used (brandão et al., 2021; di lorito et al., 2021; goodman-casanova et al., 2020); for example, , in the study by brandão et al. (2021), these interventions focused on communication, memory, and imagination. six tele-communication interventional studies, including tele-visits, tele-conference and teleassessment in patient assessment or follow-up care were identified (arighi et al., 2021; benaque et al., 2020; capozzo et al., 2020; dura-perez et al., 2022; gareri et al., 2022; lai et al., 2020). two studies conducted supportive teaching classes about health promotion activities (lai et al., 2022) and advance care planning (vellani et al., 2022) (table 1). technologies in tele-rehabilitation different types of technologies were used to deliver tele-rehabilitation for individuals living with dementia during the covid-19 crisis, including video-conferences (arighi et al., 2021; benaque et al., 2020; di lorito et al., 2021; gareri et al., 2022; lai et al., 2020; vellani et al., 2022), whatsapp and zoom based video calls and group interactions (brandão et al., 2021), telephone-based interventions (arighi et al., 2021; benaque et al., 2020; capozzo et al., 2020; dura-perez et al., 2022; goodman-casanova et al., 2020; lai et al., 2020; lai et al., 2022; panerai et al., 2021), television-based assistive technology (goodman-casanova et al., 2020), and human-robot (table 2). video tele-consultation was used in three studies, and participants had an option of telephone consultation if video communication was not possible (arighi et al., 2021; benaque et al., 2020; capozzo et al., 2020). one study compared the effectiveness of videoconferences with telephone-only interviews (lai et al., 2020), and one study only used videoconference technology for tele-rehabilitation (vellani et al., 2022). one study conducted group-based learning sessions for art‐related activities: clowning, dancing, storytelling, and cooking (brandão et al., 2021). complex technologies were used in two studies, including television-based assistive services (tv-assistdem) (goodman-casanova et al., 2020) and a hybrid face-robotic system (human-robot) (lima et al., 2021). moreover, emails, whatsapp, skype, teams, and facetime have been used in several studies. one study did not report the digital technology used with the experimental group (lai et al., 2022). purpose of tele-rehabilitation the current review identified three main purposes of rehabilitation in dementia care: monitoring and providing dementia-specific care, controlling covid-19 infection, and providing supportive care for individuals living with dementia (table 2). ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 244 monitoring and providing dementia-specific care. dementia-specific care included several types of care, for example, follow-up care patient assessments, prescribing or modifying therapy, evaluating interventions that focused on dementia-specific care, rot, and memory games. five studies reported follow-up care such as history taking (arighi et al., 2021), neurological and neuropsychological assessments (arighi et al., 2021; benaque et al., 2020; gareri et al., 2022) and participants’ social background assessment (benaque et al., 2020; duraperez et al., 2022; gareri et al., 2022). one study focused on providing treatment, for example, prescriptions or modifications of the treatment via video-consultations (arighi et al., 2021). five studies conducted dementia-specific evaluations following the interventions, such as cognition (capozzo et al., 2020; dura-perez et al., 2022; gareri et al., 2022; lai et al., 2020; panerai et al., 2021), depression (duraperez et al., 2022; gareri et al., 2022; panerai et al., 2021), behavioural changes (capozzo et al., 2020; gareri et al., 2022; lai et al., 2020; panerai et al., 2021), physical changes (capozzo et al., 2020), and functional abilities (capozzo et al., 2020; gareri et al., 2022). one study reported the use of the telephonebased rot to improve cognition, mood, and neuropsychiatric symptoms (panerai et al., 2021). in one study, the tv-assistdem facilitated memory games, leading to cognitive enhancement (goodmancasanova et al., 2020). control of covid-19 infection. telerehabilitation has been used in knowledge assessment, information provision and monitoring of the participants concerning the covid-19 outbreak. the tv-assistdem study evaluated the participants’ knowledge of the covid-19 situation, health services and social services and explored the impact of quarantine on the health-related well-being among older adults with mild cognitive impairments and mild dementia (goodman-casanova et al., 2020). two studies provided videos including information to protect from covid-19, for example, hand washing (goodman-casanova et al., 2020), providing links to official online sites such as the world health organisation or the spanish ministry of health (goodman-casanova et al., 2020), and providing online health education materials (not specified) (benaque et al., 2020). one study reported telemedicine consultations to ensure the safety of participants from covid-19 infection by monitoring health status weekly and maintaining a register regarding the covid-19 positive or suspected participants (benaque et al., 2020). dura-perez et al. (2022) assessed changes in living places with reference to lockdown, presence of covid-19 symptoms, and frequency of access to covid-19 information. one study evaluated the use of personal protective equipment, the need to quarantine, and the effects of social distancing (gareri et al., 2022). providing supportive care for individuals living with dementia. tele-rehabilitation was used to improve physical activities, social connectedness, and psychological well-being during the covid-19 pandemic. in two studies, physical activities were promoted by video interactions (di lorito et al., 2021; goodman-casanova et al., 2020). two studies provided participants with information through video sessions or telephone consultations that included information on qol and physical and psychological well-being (goodman-casanova et al., 2020; lai et al., 2020). in the study of tv-assistdem, individuals living with dementia were facilitated to maintain social connectedness with loved ones and health professionals using video calls (di lorito et al., 2021). in another study, a few groups were created to conduct live‐stream sessions called the playful living program to promote well-being and social connectedness (brandão et al., 2021). both individuals with dementia and health professionals were allocated to each group, and the program provided several opportunities for individuals living with dementia, including learning, pleasurable communication activities, social interactions, and feelings of belonging and empowerment (brandão et al., 2021). it was observed that family members and pets also participated in these group sessions (brandão et al., 2021). moreover, individuals with dementia had social sensory experiences through utilising home utensils for activities of daily living and a virtually offered hot tea drink during the sessions (brandão et al., 2021). one study provided advice on managing psychological distresses through video-consultation (goodman-casanova et al., 2020). in another study, the human-robot psychosocial interaction aimed to promote interactions and reduce anxiety and loneliness of individuals living with dementia (lima et al., 2021). the study by lai et al. (2022) digitally delivered a health promotion program to the participants. in another study, participants learned what to expect with the progression of dementia and how to prepare for advance care plans (vellani et al., 2022). furthermore, they had a chance to clarify their thoughts about future care when they were terminally ill or in a vegetative state and unable to speak for themselves (vellani et al., 2022). ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 245 effectiveness of tele-rehabilitation interventions quantitative outcomes of tele-rehabilitation interventions. in the selected studies, the primary outcomes focused on cognitive functions, behavioural changes, neuropsychological symptoms, physical well-being, functional and speech abilities, and qol. in process evaluation (secondary outcome), satisfaction or user acceptance has been considered (table 2). one study reported a significant improvement in cognitive functions following the rot in the experimental group compared to the control group whilst in the post-test experiment group compared to the pre-test experiment group (panerai et al., 2021). another study reported that video-conference consultation was associated with a higher and more stable cognitive functioning than telephone-only consultation (lai et al., 2020). this study further found deterioration of neurocognitive status in some participants in the control group, but not in the intervention group (lai et al., 2020). similarly, another study reported a deterioration in cognition in patients with ftd during the tele-consultation assessment period (capozzo et al., 2020). telephone-based rot study reported a significant decrease in behavioral and psychological changes, as well as depression in the experimental group compared to the control group and the post-test experiment group compared to the pre-test experiment group (panerai et al., 2021). one study reported a decreased intensity of bpsd scores among individuals living with dementia in the experimental group and either an upward or an invariable pattern in the control group (lai, et al., 2022). in contrast, another study reported no difference in mental health and sleeping problems in the experimental or control group following the tv-assistdem interventions (lai et al., 2020). moreover, one study reported a deterioration in behaviours such as apathy, irascibility, verbal aggression, anger and sleeping pattern changes among ftd patients during the teleconsultation period (capozzo et al., 2020). one study reported that participants did not show any nutritional or respiratory status deteriorations or improvements during the tele-conference assessment period (capozzo et al., 2020). capozzo et al. (2020) reported that ftd patients showed a mild deterioration of bradykinesia, limb rigidity and swallowing during the telephone-based assessment intervention (capozzo et al., 2020). this study further reported that language abilities deteriorated during the telephone-based interventions (capozzo et al., 2020). the tvassistdem study reported no improvements in functional abilities among the intervention group participants, and gordon’s functional health patterns variables did not significantly differ between the intervention and control groups (goodmancasanova et al., 2020). one study reported that the tele-conferencing consultation increased the quality of life (qol) of individuals living with dementia in the intervention group during the covid-19 pandemic (lai et al., 2020). in this study, a falling trend of qol was observed in the control group, and the qol was significantly higher in the intervention group compared to the control group (lai et al., 2020). five studies reported process evaluation as satisfaction or acceptance of tele-rehabilitation interventions. one study reported that most of the tele-visits (68.5%) were successful (arighi et al., 2021). notably, the higher success rate was reported in engaging tele-visits with the presence of a young caregiver than in engaging tele-visit without a young caregiver (arighi et al., 2021). one study reported that 75% of tele-visits were equal to or better than face-to-face consultations (benaque et al., 2020). another study reported that the participant showed “happy face” in pre and post human-robotic interactions, and the engagement time with the human-robotic interaction was increased with several interactions (lima et al., 2021). another study reported that ftd patients were satisfied with the telephone-based assessments (88%) and expressed their willingness to continue the tele-medicine program (90%) (capozzo et al., 2020). in the study by vellani et al. (2022), the participants reported that the video-conference educational program was acceptable on the treatment evaluation inventory questionnaire (54.7±8.9). these participants rated the high video quality and sound quality, and they experienced minimum lag in video (vellani et al., 2022). qualitative outcomes of tele-rehabilitation interventions. the effectiveness of telerehabilitation was qualitatively explored in two studies, which delivered physical exercises by a videoconsultation platform (the praised study) (di lorito et al., 2021) and group-based remote learning sessions for art‐related activities (brandão et al., 2021). the participants of the study by di lorito et al. (2021) expressed positive perceptions towards the program, including enhancing rapport and connectedness with the therapists and allowing to ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 246 identify non-verbal cues; recognising the therapist as a model due to the therapist also do exercise with clients during video sessions; and allowing the therapist to assess the improvement and facilitating progression. moreover, participants in this study found that video-calling was not familiar or not easy to learn for older people compared to the younger group; however, the presence of a caregiver is a key to face potential risks of exercising (di lorito et al., 2021). in the study by brandão et al. (2021), participants had opportunities to enjoy, learn, imagine, and improve creativity, and they experienced a feeling of belonging and connectedness. four studies reported qualitative findings in relation to process evaluation. one study reported that the online program was supportive regarding the experience of engaging with the program (brandão et al., 2021). one study reported that the videodelivered exercise sessions were less attractive than the face-to-face sessions due to a lack of meaningful human interactions in video-delivered sessions (di lorito et al., 2021). the human-robotic study revealed that the participant had no difficulty talking to the robot or was never disruptive during any sessions (lima et al., 2021). participants’ opinions on videoconferencing were mainly positive due to saving time and cost during covid-19 (vellani et al., 2022). barriers and challenges of using new technologies by individuals living with dementia the included studies have identified barriers or challenges of delivering tele-interventions for individuals living with dementia concerning resources, internet connection, and participants’ abilities. these barriers and challenges included nonavailability of devices and the internet (arighi et al., 2021; benaque et al., 2020; di lorito et al., 2021), lack of information technology knowledge (brandão et al., 2021; di lorito et al., 2021), connection errors (arighi et al., 2021; lima et al., 2021; vellani et al., 2022), challenges of using the devices, such as the inability of positioning the devices (brandão et al., 2021), memory issues, such as forgetfulness to participate (brandão et al., 2021), environmental barriers such as unexpected visitors and smoke alarms (vellani et al., 2022), the inability of rehabilitation professionals to support caregivers concerning technological issues due to travel restrictions (capozzo et al., 2020), reluctances of engaging in tele-rehabilitation interventions (benaque et al., 2020; capozzo et al., 2020), and hearing issues (brandão et al., 2021). one study reported that participants refused video-consultations due to unavailability and nonfamiliarity with the devices (capozzo et al., 2020). a difficulty in language assessments through teleconsultation was also reported (capozzo et al., 2020). another study found that individuals with dementia gathered limited information during tele-consultation due to information overload or lengthy interviews that diminished information gathering during the consultation (goodman-casanova et al., 2020). discussion the current review systematically explored the recent evidence on tele-rehabilitation interventions, including their effectiveness concerning individuals living with dementia during the covid-19 pandemic. this review revealed that telerehabilitation interventions were mainly limited to european and high-income countries, and this trend was also reported before the covid-19 pandemic (saito & izawa, 2021). however, approximately 60% of the dementia population live in low-and-middleincome countries (who, 2020), and the adverse effects of dementia on the older population are wellknown throughout the world (azarpazhooh et al., 2020). furthermore, a significant correlation was reported globally between the burden of dementia, covid-19 cases, and death (azarpazhooh et al., 2020). given the challenges of dementia care amidst the covid-19 pandemic, individuals living with dementia worldwide need urgent support, and telemedicine and digital technology devices are one of effective ways to provide this support (cuffaro et al., 2020). therefore, tele-rehabilitation interventions can be expanded to reduce the dual burden of dementia and covid-19 globally. the current review identified that methodically robust studies are sparse, particularly randomised control trials to identify the effectiveness. moreover, most of the included studies recruited participants from their own projects or units, leading to a higher risk of bias. given covid-19 guidelines and safety measures, conducting randomised control trials that require physical examinations and laboratory tests was a challenge (wijesooriya et al., 2020). however, wijesooriya et al. (2020) emphasised how to perform randomised control trials using tele-health. for example, screening the subject, obtaining informed consent, and follow-up activities can be effectively fulfilled without labs or physical examinations, which may be required by randomised control trials (wijesooriya et al., 2020). ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 247 type of dementia interventions although a number of pharmacological and nonpharmacological interventions are available for individuals living with dementia, this review reports limited availability of such interventions incorporating tele-rehabilitation during the covid19 pandemic. therefore, expanding such interventions is beneficial to improve well-being and qol among individuals living with dementia during the covid-19 pandemic. these interventions include optimising medication through tele-dementia clinics (chang et al., 2018), reminiscence therapy (ge et al., 2018), music therapy (clements-cortés & silva, 2021), occupational therapy (ge et al., 2018), groupbased virtual cognitive stimulation therapy (cheung & peri, 2021) and 2d exercise sessions (bernini et al., 2020). use of technologies in tele-rehabilitation the current review found that a wide range of technologies, from simple telephone calls to complex television-based assistive technology or robotic technology, was used to rehabilitate individuals living with dementia. videoconference was the most used technology during the covid-19 outbreak, particularly for monitoring and teaching. similarly, videoconferencing was a widely used technology in dementia before the pandemic (burton et al., 2016; lindauer et al., 2017). therefore, videoconferencing might be used by clinicians in managing individuals living with dementia living in the community. it will allow individuals living with dementia to reduce their risk of having covid-19. robotic technology is one of the advanced tele-medicine options used in telerehabilitation. previous literature supports accepting robotic interventions by individuals living with dementia (gongora alonso et al., 2019), and robots interventions improved social connectedness (moyle et al., 2017). conversely, poor technological knowledge of participants was reported as a barrier to using robotic technology (moyle et al., 2017). more studies are essential before expanding robotic interventions in tele-rehabilitation for individuals living with dementia. despite several technologies used during the covid-19 pandemic, the current review identified a lack of computer-based tele-rehabilitation and the unavailability of mhealth interventions. however, previous literature reported the availability of computer-based cognitive training interventions, including online neuropsychological testing, interactive video games and integrated simulating programs (garcia-casal et al., 2017; paddock et al., 2019; rhodius-meester et al., 2020). mhealth applications were developed to facilitate individuals living with dementia, for example, memory enhancement, communication, safety monitoring applications, and calendar-based reminders or audio reminders (elfaki & alotaibi, 2018). these interventions may be appropriate for individuals living with dementia living in low-and-middleincome countries during this covid-19 pandemic (ghani et al., 2020) due to their cost-effectiveness (ghani et al., 2020) and high accessibility (yousaf et al., 2019). purpose of tele-rehabilitation in dementia care the current review identified three main purposes of using tele-rehabilitation for individuals living with dementia during the covid-19 pandemic: monitoring and providing dementia-specific care, controlling covid-19 infection, and providing supportive care for individuals living with dementia. in line with the present study, mok et al. (2020) have identified similar themes in a framework of homebased care strategies for dementia amidst the covid-19 pandemic. these themes included control of infection, care for basic needs, calm down challenging behaviours, comprehensive cognitive enhancement, clinical management of cognitive disorders, and concerns for and credits to caregivers. in dementia-specific care, tele-rehabilitation interventions of the current review have addressed several aspects of rehabilitation of individuals living with dementia. for example, tele-rehabilitation has been used to assess the health status of individuals living with dementia and evaluate the effectiveness of the intervention on them. geddes et al. (2020) argued that dementia neurological assessment tests were remotely reliable with limited validity. the current review identified an emerging purpose of dementia tele-rehabilitation: “protecting individuals living with dementia from the covid-19 outbreak”. these new technologies can be used to protect individuals living with dementia during the covid-19 outbreak. information provision is one of the primary functions of tele-rehabilitation that can be incorporated into educating people regarding the covid-19 infection (monaghesh & hajizadeh, 2020). this review shows that covid-19-related information has been delivered through telerehabilitation interventions, for example, information on covid-19 disease, basic safety measures, managing psychological distresses and health guidelines. moreover, this review found that telerehabilitation interventions help to monitor signs and symptoms of covid-19 and assess the impact of ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 248 confinement due to covid-19; therefore, these activities can be expanded during the covid-19 pandemic. tele-rehabilitation provides supporting services for individuals living with dementia; for example, exercise programs were reportedly proven to provide greater acceptance in dementia care even before the covid-19 pandemic (bello-haas et al., 2014). in addition, individuals living with dementia were supported to communicate with health professionals and loved ones by tele-rehabilitation, particularly using video-technologies. it has been shown that a limited number of telerehabilitation interventions were developed to manage dementia and improve mental and physical well-being during the covid-19 pandemic. however, individuals living with dementia present with cognitive impairments, bpsd and functional disabilities (borges-machado et al., 2020). recent literature supports that new technologies can be used effectively in managing these needs. for example, tele-rehabilitation supports individuals living with dementia with cognitive development, remote monitoring, fall prevention, dealing with wandering, providing a communication channel between loved ones, early notification of risks and guidance for risk modification, audio reminding for daily activities and information provision (elfaki & alotaibi, 2018). therefore, expanding tele-rehabilitation is essential into those aspects, i.e., providing dementia-specific care and providing supportive services. effectiveness of tele-rehabilitation interventions only a few studies have measured the effectiveness of interventions on individuals living with dementia during the covid-19 pandemic. the current review reported that tele-rehabilitation interventions were effectively incorporated into individuals living with dementia in improving cognition, bpsd and qol. furthermore, individuals living with dementia were satisfied and accepted tele-rehabilitation interventions, and a previous systematic review also reported that tele-rehabilitation interventions had improved outcome measures, for example, cognitive assessment of individuals living with dementia (yi et al., 2021). conversely, another systematic review revealed that the effectiveness of cognitive telerehabilitation was limited on individuals living with dementia (cotelli et al., 2019). moreover, the lack of high-quality randomised control trials prevents the full understanding of the effectiveness. consequently, the prevailing restrictions with the covid-19 pandemic have increased the necessity of empirical evidence in this context. another gap identified that further studies are needed to determine cultural differences in effectiveness, satisfaction, and acceptance of telerehabilitation used by individuals living with dementia because most studies belong to european and high-income countries. barriers and challenges the current review identified some barriers or challenges of using technology by older populations living with dementia, especially when maintaining social distance. firstly, the non-availability of devices restricts the use of tele-rehabilitation interventions. the previous literature reported that researchers had handed over tele-intervention devices to individuals living with dementia during their interventions (gately et al., 2019). secondly, the current review identified that participants’ poor technological knowledge was a limitation to implement telerehabilitation. however, literature support that telerehabilitation effectiveness could be enhanced by inhome software installation and providing training for the participants (gately et al., 2019). the current review further reported that social restrictions with the covid-19 prevented the research team from supporting the participants to overcome technological problems. thirdly, in this mixedmethod systematic review, both quantitative and qualitative findings identified that individuals living with dementia, who were mainly older, successfully participated in tele-rehabilitation interventions in the presence of a caregiver. a previous study also found that the presence of caregivers facilitated the engagement with telerehabilitation interventions (bello-haas et al., 2014). this review did not find advantages of having caregivers along with individuals living with dementia during tele-interventions. it might be attributed to age-related changes in this population with dementia because a previous systematic review found that participants of tele-health were affected by hearing or visual impairments related to ageing (yi et al., 2021). therefore, participation of both individuals living with dementia and their caregivers are warranted in tele-rehabilitation studies during the covid-19 pandemic. limitations ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 249 the limitations of the review were considering only english language studies from limited databases and including only peer-review journal articles. conclusion during the covid-19 pandemic, there were no telerehabilitation based pharmacological interventions, and only a limited number of nonpharmacological interventions are available for patients with dementia. many available interventions are based on developed countries, especially from european countries. several methods such as video consultation, telephoning, television assisted program and humanrobotic interventions have been used in telerehabilitation and are accepted by individuals living with dementia. the main purposes of telerehabilitation include monitoring and providing dementia-specific care, control of covid-19 infection, and providing supportive care for individuals living with dementia. as an effective mode of remote monitoring and treating, health professionals can use tele-rehabilitative interventions in dementia care. however, the effectiveness cannot be generalised due to the lack of methodical rigour of interventions. moreover, tele-rehabilitation interventions did not increase the functional abilities of individuals living with dementia, and health professionals need to pay attention to rehabilitate ftd patients during the covid-19 pandemic. the identified tele-rehabilitation usability barriers for individuals living with dementia were lack of devices and digital knowledge, reluctance to use teleinterventions, and connection issues. the engagement with interventions can be enhanced by engaging both individuals living with dementia and their caregivers. this review suggests the need for expanding high-quality studies, particularly trials to support the individuals living with dementia living with the challenges of the covid-19 crisis. references arighi, a., fumagalli, g. g., carandini, t., pietroboni, a. m., de riz, m. a., galimberti, d., & scarpini, e. (2021). facing the digital divide into a dementia clinic during covid19 pandemic: caregiver age matters. neurological sciences, 42(4), 1247–1251. https://doi.org/10.1007/s10072-020-05009w azarpazhooh, m. r., amiri, a., morovatdar, n., steinwender, s., rezaei ardani, a., yassi, n., biller, j., stranges, s., tokazebani belasi, m., neya, s. k., khorram, b., sheikh andalibi, m. s., arsang-jang, s., mokhber, n., & di napoli, m. (2020). correlations between covid-19 and burden of dementia: an ecological study and review of literature. journal of the neurological sciences, 416, 117013. https://doi.org/10.1016/j.jns.2020.117013 barros, d., borges-machado, f., ribeiro, ó., & carvalho, j. (2020). dementia and covid19: the ones not to be forgotten. american journal of alzheimer's disease and other dementias, 35, 1-2 1533317520947505. https://doi.org/10.1177/153331752094750 5 bello-haas, v. p.m.d, o'connell, m. e., morgan, d. g., & crossley, m. (2014). lessons learned: feasibility and acceptability of a telehealthdelivered exercise intervention for ruraldwelling individuals with dementia and their caregivers. rural and remote health, 14(3), 2715. benaque, a., gurruchaga, m. j., abdelnour, c., hernández, i., cañabate, p., alegret, m., rodríguez, i., rosende-roca, m., tartari, j. p., esteban, e., lópez, r., gil, s., vargas, l., mauleón, a., espinosa, a., ortega, g., sanabria, a., pérez, a., alarcón, e., … boada, m. (2020). dementia care in times of covid-19: experience at fundació ace in barcelona, spain. journal of alzheimer's disease : jad, 76(1), 33–40. https://doi.org/10.3233/jad-200547 bernini, s., stasolla, f., panzarasa, s., quaglini, s., sinforiani, e., sandrini, g., vecchi, t., tassorelli, c., & bottiroli, s. (2021). cognitive telerehabilitation for older adults with neurodegenerative diseases in the covid-19 era: a perspective study. frontiers in neurology, 11, 623933. https://doi.org/10.3389/fneur.2020.62393 3 borges-machado, f., barros, d., ribeiro, ó., & carvalho, j. (2020). the effects of covid19 home confinement in dementia care: physical and cognitive decline, severe neuropsychiatric symptoms and increased caregiving burden. american journal of alzheimer's disease and other dementias, 35, 1533317520976720. https://doi.org/10.1177/153331752097672 0 bramer, w. m., giustini, d., & kramer, b. m. (2016). comparing the coverage, recall, and precision of searches for 120 systematic reviews in embase, medline, and google scholar: a prospective study. systematic reviews, 5, 39. https://doi.org/10.1016/j.jns.2020.117013 https://doi.org/10.1177/1533317520947505 https://doi.org/10.1177/1533317520947505 https://doi.org/10.3389/fneur.2020.623933 https://doi.org/10.3389/fneur.2020.623933 ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 250 https://doi.org/10.1186/s13643-016-02157 brandão, l., bauer, m. a., haas, a. n., silveira, r. d. s., alves, c. p., souza, d. n., beber, b. c., & oliveira, w. f. (2021). playing remotely in times of crisis: a program to overcome social isolation. international journal of geriatric psychiatry, 37(1). https://doi.org/10.1002/gps.5638 burton, r., o'connell, m. e., & morgan, d. g. (2016). exploring interest and goals for videoconferencing delivered cognitive rehabilitation with rural individuals with mild cognitive impairment or dementia. neurorehabilitation, 39(2), 329–342. https://doi.org/10.3233/nre-161364 capozzo, r., zoccolella, s., frisullo, m. e., barone, r., dell'abate, m. t., barulli, m. r., musio, m., accogli, m., & logroscino, g. (2020). telemedicine for delivery of care in frontotemporal lobar degeneration during covid-19 pandemic: results from southern italy. journal of alzheimer's disease : jad, 76(2), 481–489. https://doi.org/10.3233/jad-200589 chang, w., homer, m., & rossi, m. i. (2018). use of clinical video telehealth as a tool for optimizing medications for rural older veterans with dementia. geriatrics, 3(3), 44. https://doi.org/10.3390/geriatrics3030044 cheung, g., & peri, k. (2021). challenges to dementia care during covid-19: innovations in remote delivery of group cognitive stimulation therapy. aging & mental health, 25(6), 977–979. https://doi.org/10.1080/13607863.2020.17 89945 choi, y. h., & paik, n. j. (2018). mobile game-based virtual reality program for upper extremity stroke rehabilitation. journal of visualized experiments, (133), 56241. https://doi.org/10.3791/56241 clements-cortés, a., mercadal-brotons, m., silva, t. r. a. & moreira, s. v. (2021). telehealth music therapy for persons with dementia and/or caregivers. music medicine https://doi.org/10.47513/mmd.v13i3.821 cotelli, m., manenti, r., brambilla, m., gobbi, e., ferrari, c., binetti, g., & cappa, s. f. (2019). cognitive telerehabilitation in mild cognitive impairment, alzheimer's disease and frontotemporal dementia: a systematic review. journal of telemedicine and telecare, 25(2), 67-79. https://doi.org/10.1177/1357633x177403 90 cuffaro, l., di lorenzo, f., bonavita, s., tedeschi, g., leocani, l., & lavorgna, l. (2020). dementia care and covid-19 pandemic: a necessary digital revolution. neurological sciences, 41(8), 1977-1979. https://doi.org/10.1007/s10072-02004512-4 d'onofrio, g., sancarlo, d., seripa, d., ricciardi, f., giuliani, f., panza, f., & greco, a. (2016). non-pharmacological approaches in the treatment of dementia. in update on dementia. https://doi.org/10.5772/64232 di lorito, c., duff, c., rogers, c., tuxworth, j., bell, j., fothergill, r., wilkinson, l., bosco, a., howe, l., o'brien, r., godfrey, m., dunlop, m., van der wardt, v., booth, v., logan, p., cowley, a., & harwood, r. h. (2021). telerehabilitation for people with dementia during the covid-19 pandemic: a casestudy from england. international journal of environmental research and public health, 18(4), 1717. https://doi.org/10.3390/ijerph18041717 dura-perez, e., goodman-casanova, j. m., veganuñez, a., guerrero-pertiñez, g., varelamoreno, e., garolera, m., quintana, m., cuesta-vargas, a. i., barnestein-fonseca, p., gómez sánchez-lafuente, c., & et al. (2022). the impact of covid-19 confinement on cognition and mental health and technology use among socially vulnerable older people: retrospective cohort study. journal of medical internet research, 24(2), e30598. https://doi.org/10.2196/30598 elfaki, a. o., & alotaibi, m. (2018). the role of mhealth applications in the fight against alzheimer's: current and future directions. mhealth, 4, 32. https://doi.org/10.21037/mhealth.2018.07. 03 gale, s. a., acar, d., & daffner, k. r. (2018). dementia. the american journal of medicine, 131(10), 1161-1169. https://doi.org/10.1016/j.amjmed.2018.01. 022 garcía-casal, j. a., loizeau, a., csipke, e., francomartín, m., perea-bartolomé, m. v., & orrell, m. (2017). computer-based cognitive interventions for people living with dementia: a systematic literature review and meta-analysis. aging & mental health, 21(5), 454–467. https://doi.org/10.1080/13607863.2015.11 32677 gately, m. e., trudeau, s. a., & moo, l. r. (2019). in-home video telehealth for dementia https://doi.org/10.1002/gps.5638 https://doi.org/10.3233/jad-200589 https://doi.org/10.3390/geriatrics3030044 https://doi.org/10.3791/56241 https://doi.org/10.2196/30598 ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 251 management: implications for rehabilitation. current geriatrics reports, 8(3), 239–249. https://doi.org/10.1007/s13670-01900297-3 ge, s., zhu, z., wu, b., & mcconnell, e. s. (2018). technology-based cognitive training and rehabilitation interventions for individuals with mild cognitive impairment: a systematic review. bmc geriatrics, 18(1), 213. https://doi.org/10.1186/s12877-0180893-1 geddes, m. r., o'connell, m. e., fisk, j. d., gauthier, s., camicioli, r., & ismail, z. (2020). remote cognitive and behavioral assessment: report of the alzheimer society of canada task force on dementia care best practices for covid-19. alzheimer's & dementia, 12(1), e12111. https://doi.org/10.1002/dad2.12111 gareri, p., fumagalli, s., malara, a., mossello, e., trevisan, c., volpato, s., coin, a., calsolaro, v., bellelli, g., del signore, s., zia, g., ranhoff, a. h., incalzi, r. a., & gerocovid ambulatory study group (2022). management of older outpatients during the covid-19 pandemic: the gerocovid ambulatory study. gerontology, 68(4), 412– 417. https://doi.org/10.1159/000516969 ghani, z., jarl, j., sanmartin berglund, j., andersson, m., & anderberg, p. (2020). the costeffectiveness of mobile health (mhealth) interventions for older adults: systematic review. international journal of environmental research and public health, 17(15), 5290. https://doi.org/10.3390/ijerph17155290 gongora alonso, s., hamrioui, s., de la torre diez, i., motta cruz, e., lopez-coronado, m., & franco, m. (2019). social robots for people with aging and dementia: a systematic review of literature. journal of the american telemedicine association, 25(7), 533-540. https://doi.org/10.1089/tmj.2018.0051 goodman-casanova, j. m., dura-perez, e., guzmanparra, j., cuesta-vargas, a., & mayoral cleries, f. (2020). telehealth home support during covid-19 confinement for community-dwelling older adults with mild cognitive impairment or mild dementia: survey study. journal of medical internet research, 22(5), e19434. https://doi.org/10.2196/19434 goossen, k., hess, s., lunny, c., & pieper, d. (2020). database combinations to retrieve systematic reviews in overviews of reviews: a methodological study. bmc medical research methodology, 20(1), 138. https://doi.org/10.1186/s12874-02000983-3 gorenko, j. a., moran, c., flynn, m., dobson, k., & konnert, c. (2021). social isolation and psychological distress among oldera dults related to covid-19: a narrative review of remotely-delivered interventions and recommendations. journal of applied gerontology, 40(1), 3-13. https://doi.org/10.1177/073346482095855 0 hong, q. n., pluye, p., fabregues, s., bartlett, g., boardman, f., cargo, m., dagenais, p., gagnon, m. p., griffiths, f., nicolau, b., o'cathain, a., rousseau, m. c., & vedel, i. (2018). mixed methods appraisal tool (mmat), version 2018. user guide. hong, q. n., pluye, p., fàbregues, s., bartlett, g., boardman, f., cargo, m., dagenais, p., gagnon, m. p., griffiths, f., nicolau, b., o’cathain, a., rousseau, m., & vedel, i. (2019). improving the content validity of the mixed methods appraisal tool: a modified edelphi study. journal of clinical epidemiology, 111, 49-59 e41. https://doi.org/10.1016/j.jclinepi.2019.03. 008 iadecola, c., duering, m., hachinski, v., joutel, a., pendlebury, s. t., schneider, j. a., & dichgans, m. (2019). vascular cognitive impairment and dementia: jacc scientific expert panel. journal of the american college of cardiology, 73(25), 3326-3344. https://doi.org/https://doi.org/10.1016/j.j acc.2019.04.034 joanna briggs institute. (2014). the joanna briggs institute reviewers’ manual 2014: methodology for jbi mixed methods systematic reviews. http://joannabriggs.org/assets/docs/suma ri/reviewersmanual_mixed-methodsreview-methods-2014-ch1.pdf lai, f. h., yan, e. w., yu, k. k., tsui, w. s., chan, d. t., & yee, b. k. (2020). the protective impact of telemedicine on persons with dementia and their caregivers during the covid-19 pandemic. the american journal of geriatric psychiatry 28(11), 1175–1184. https://doi.org/10.1016/j.jagp.2020.07.019 lai, y. l., chen, w. y., hsu, l. y., & fu, c. h. (2022). the effect of a tele-health intervention program on home-dwelling persons with dementia or mci and on their primary caregivers during the stay-at-home-order period in the covid-19 pandemic outbreak: evidence from taiwan. healthcare (basel), 10(6). https://doi.org/10.1186/s12877-018-0893-1 https://doi.org/10.1186/s12877-018-0893-1 https://doi.org/10.1186/s12874-020-00983https://doi.org/10.1186/s12874-020-00983https://doi.org/10.1016/j.jagp.2020.07.019 ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 252 https://doi.org/10.3390/healthcare100609 69 laver, k. e., schoene, d., crotty, m., george, s., lannin, n. a., & sherrington, c. (2013). telerehabilitation services for stroke. the cochrane database of systematic reviews, (12), cd010255. https://doi.org/10.1002/14651858.cd010 255.pub2. lima, m. r., wairagkar, m., natarajan, n., vaitheswaran, s., & vaidyanathan, r. (2021). robotic telemedicine for mental health: a multimodal approach to improve humanrobot engagement. frontiers in robotics and ai, 8:618866. https://doi.org/10.3389/frobt.2021.618866 lindauer, a., seelye, a., lyons, b., dodge, h. h., mattek, n., mincks, k., kaye, j., & ertenlyons, d. (2017). dementia care comes home: patient and caregiver assessment via telemedicine. the gerontologist, 57(5), e85– e93. https://doi.org/10.1093/geront/gnw206 lópez, p. l., torrente, f. m., comandé, d., ailan, d., fernandez nievas, s. e., robertson, l., & ciapponi, a. (2021). remote non‐ pharmacologic interventions for sleep problems in adults during the covid‐19 pandemic. cochrane database of systematic reviews (5). cd015051. https://doi.org/10.1002/14651858.cd015 051 maki, y., sakurai, t., okochi, j., yamaguchi, h., & toba, k. (2018). rehabilitation to live better with dementia. geriatrics & gerontology international, 18(11). https://doi.org/10.1111/ggi.13517 mantovani, e., zucchella, c., bottiroli, s., federico, a., giugno, r., sandrini, g., chiamulera, c., & tamburin, s. (2020). telemedicine and virtual reality for cognitive rehabilitation: a roadmap for the covid-19 pandemic. frontiers in neurology, 11, 926. https://doi.org/10.3389/fneur.2020.00926. ecollection 2020 mchugh, m. l. (2012). interrater reliability: the kappa statistic. biochemia medica, 22(3), 276– 282. mok, v. c. t., pendlebury, s., wong, a., alladi, s., au, l., bath, p. m., biessels, g. j., chen, c., cordonnier, c., dichgans, m., dominguez, j., gorelick, p. b., kim, s., kwok, t., greenberg, s. m., jia, j., kalaria, r., kivipelto, m., naegandran, k., . . . scheltens, p. (2020). tackling challenges in care of alzheimer's disease and other dementias amid the covid-19 pandemic, now and in the future. alzheimer's & dementia, 16(11), 1571-1581. https://doi.org/10.1002/alz.12143 monaghesh, e., & hajizadeh, a. (2020). the role of telehealth during covid-19 outbreak: a systematic review based on current evidence. bmc public health, 20(1), 1193. https://doi.org/10.1186/s12889-02009301-4 moyle, w., arnautovska, u., ownsworth, t., & jones, c. (2017). potential of telepresence robots to enhance social connectedness in older adults with dementia: an integrative review of feasibility. international psychogeriatrics, 29(12), 1951-1964. https://doi.org/10.1017/s10416102170017 76 paddock, k., brown wilson, c., walshe, c., & todd, c. (2019). care home life and identity: a qualitative case study. gerontologist, 59(4), 655-664. https://doi.org/10.1093/geront/gny090 page, m. j., mckenzie, j. e., bossuyt, p. m., boutron, i., hoffmann, t. c., mulrow, c. d., shamseer, l., tetzlaff, j. m., akl, e. a., brennan, s. e., chou, r., glanville, j., grimshaw, j. m., hrobjartsson, a., lalu, m. m., li, t., loder, e. w., mayo-wilson, e., mcdonald, s., . . . moher, d. (2021). the prisma 2020 statement: an updated guideline for reporting systematic reviews. bmj, 372, n71. https://doi.org/10.1136/bmj.n71 panerai, s., raggi, a., tasca, d., musso, s., gelardi, d., prestianni, g., catania, v., muratore, s., & ferri, r. (2021). telephone-based reality orientation therapy for patients with dementia: a pilot study during the covid19 outbreak. the american journal of occupational therapy, 75(2), 7502205130p1– 7502205130p9. https://doi.org/10.5014/ajot.2021.046672 peretti, a., amenta, f., tayebati, s. k., nittari, g., & mahdi, s. s. (2017). telerehabilitation: review of the state-of-the-art and areas of application. jmir rehabil assistive technology, 4(2), e7. https://doi.org/10.2196/rehab.7511 rhodius-meester, h. f. m., paajanen, t., koikkalainen, j., mahdiani, s., bruun, m., baroni, m., lemstra, a. w., scheltens, p., herukka, s. k., pikkarainen, m., hall, a., hänninen, t., ngandu, t., kivipelto, m., van gils, m., hasselbalch, s. g., mecocci, p., remes, a., soininen, h., . . . lötjönen, j. https://doi.org/10.3390/healthcare10060969 https://doi.org/10.3390/healthcare10060969 https://doi.org/10.1002/alz.12143 ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 253 (2020). ccog: a web-based cognitive test tool for detecting neurodegenerative disorders. alzheimer's & dementia, 12(01). https://doi.org/10.1002/dad2.12083 richmond, t., peterson, c., cason, j., billings, m., terrell, e. a., lee, a. c. w., towey, m., parmanto, b., saptono, a., cohn, e. r., & brennan, d. (2017). american telemedicine association's principles for delivering telerehabilitation services. international journal of telerehabilitation, 9(2), 63-68. https://doi.org/10.5195/ijt.2017.6232 saito, t., & izawa, k. p. (2021). effectiveness and feasibility of home-based telerehabilitation for community-dwelling elderly people in southeast asian countries and regions: a systematic review. aging clinical and experimental research, 33(10), 2657-2669. https://doi.org/10.1007/s40520-02101820-3 suarez-gonzalez, a., rajagopalan, j., livingston, g., & alladi, s. (2021). the effect of covid-19 isolation measures on the cognition and mental health of people living with dementia: a rapid systematic review of one year of quantitative evidence. eclinicalmedicine, 39, 101047. https://doi.org/10.1016/j.eclinm.2021.101 047 temesgen, z. m., desimone, d. c., mahmood, m., libertin, c. r., varatharaj palraj, b. r., & berbari, e. f. (2020). health care after the covid-19 pandemic and the influence of telemedicine. mayo clinic proceedings, 95(9s), s66-s68. https://doi.org/10.1016/j.mayocp.2020.06. 052 theander s. s. (2006). the use of pubmed/medline in psychiatry. 1: presentation of nlm and pubmed. nordic journal of psychiatry, 60(4), 299–304. https://doi.org/10.1080/080394806007903 90 tsapanou, a., zoi, p., kalligerou, f., blekou, p., & sakka, p. (2021). the effect of prolonged lockdown due to covid-19 on greek demented patients of different stages and on their caregivers. journal of alzheimer's disease, 83(2), 907–913. https://doi.org/10.3233/jad-210702 vellani, s., puts, m., iaboni, a., & mcgilton, k. s. (2022). acceptability of the voice your values, an advance care planning intervention in persons living with mild dementia using videoconferencing technology. plos one, 17(4), e0266826. https://doi.org/10.1371/journal.pone.0266 826 wijesooriya, n. r., mishra, v., brand, p., & rubin, b. k. (2020). covid-19 and telehealth, education, and research adaptations. paediatric respiratory reviews, 35, 38–42. https://doi.org/10.1016/j.prrv.2020.06.009 world health organisation. (2022). coronavirus disease. https://www.who.int/healthtopics/coronavirus#tab=tab_1 world health organisation. (2020). dementia. https://www.who.int/news-room/factsheets/detail/dementia world health organization. (2010). telemedicine: opportunities and developments in member states: report on the second global survey on ehealth. (9789241564144). geneva: world health organisation. https://apps.who.int/iris/handle/10665/44 497 yi, j. s., pittman, c. a., price, c. l., nieman, c. l., & oh, e. s. (2021). telemedicine and dementia care: a systematic review of barriers and facilitators. journal of the american medical directors association, 22(7), 1396-1402 e1318. https://doi.org/10.1016/j.jamda.2021.03.0 15 yousaf, k., mehmood, z., saba, t., rehman, a., munshi, a. m., alharbey, r., & rashid, m. (2019). mobile-health applications for the efficient delivery of health care facility to people with dementia (pwd) and support to their carers: a survey. biomed research international, 2019, 7151475. https://doi.org/10.1155/2019/7151475 ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 254 figure 1: the prisma-2020 flow diagram for study selection (page et al., 2021) * record-the title or abstract (or both) of a report indexed in a database or website ** report-a document supplying information about a particular study records* identified from databases (n = 638) duplicate records removed (n = 67) records screened (n = 571) records excluded (n = 490) reports** sought for retrieval (n = 98) reports not retrieved (n = 1) (no full text) reports assessed for eligibility (n = 97) reports excluded: (n=84) non-dementia (n= 17) non-rehabilitation (n = 9) non-intervention (n = 12) before covid era (n= 6) grey literature/ opinion papers/ reviews (n = 40) citation searching (n = 63) reports assessed for eligibility (n = 20) reports excluded: (n=20) non-dementia (n = 9) before covid era (n = 6) non-intervention (n = 3) grey literature (n= 2) studies included in review (n = 13) identification of studies via databases and registers identification of studies via other methods id en ti fi ca ti o n s cr ee n in g in cl u d ed reports sought for retrieval (n = 20) reports not retrieved (n = 43) ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 255 table 1. study characteristics author, year, country aim of the study design population, groups, sampling type of intervention and telerehabilitation involved and duration/ intensity study variables (study tool) barriers and challenges of using interventions arighi (2021), italy to describe the digital divide of a population of patients with dementia contacted by telemedicine during the lockdown due to the covid-19 pandemic and to understand which factors can influence telemedicine successfulness (i.e., demographic and cognitive data of the subjects, presence, and generation of caregivers) interventional study sample: people with dementia (n= 108) from an alzheimer's centre groups: video televisits (n=78) and telephone tele-visits (n=34) sampling: convenience sampling non-pharmacological intervention (tele-visit) telemedicine visits using microsoft teams for follow-up care to patients with dementia. duration/ intense: not given quantitative measurements: medical history cognition (mmse) lack of devices with internet: 23.5% (n=8), connection issues: 76.4% (n=26) the results can be affected by the time and frequency of contacts benaque (2020), spain to assess the major challenges with the unexpected disruption of the normality of the interventional study sample: people with dementia; or cognitive impairment or without signs of cognitive impairment (n=350) non-pharmacological intervention (tele-conference) telemedicine videoconference. quantitative measurements: health status (using a checklist) some patients and families were reluctant to telemedicine. some others did not have devices. ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 256 health system, caused by the covid-19 outbreak and its consequences. to assess the rapid evolving from face-to-face consultation to telemedicine consultation, and the outcomes of this transition. from a memory unit and on follow-up sampling: convenience sampling if videoconference was not possible, telephone conversation) duration/ intense: weekly visits / for 16 weeks estimated the average number of visits causes for not doing virtual consultations brandão (2021), brazil to examine the feasibility of an intergenerational remote intervention program designed to promote the wellbeing and social connection of vulnerable older adults, mainly people with aphasia and dementia during the covid‐19 pandemic in the south of brazil. a mixed‐ method design of the study assessing the feasibility and acceptability of the interventional program sample: older adults with stroke‐induced cognitive impairments, dementia, and individuals without any neurological conditions (n=34) dementia reported mild to moderate 5 (20.8%). non-pharmacological intervention (online inter-disciplinary program) zoom sessions under 3 themes for 3 months: communication, memory and imagination. artistic activities included dancing, clowning, storytelling, and cooking. interactions were made through video calls using whatsapp and zoom duration: 3 months quantitative measurements: depression (gds), anxiety (geriatric anxiety inventory) qualitative measurements participative observations of group sessions participants’ perceptions of the program hearing difficulties, position the tablet correctly to capture face and gestures. technological problems (e.g., activating the microphone and camera, “troubleshoot”, experiencing abrupt disconnection) cognitive challenges (memory and executive difficulties, such as forgetting meetings and not checking messages) ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 257 capozzo (2020), italy to evaluate whether the assessment of people with ftd using telemedicine is feasible and acceptable during the covid-19 pandemic. interventional study sample: people with ftd (n=32) and their caregivers. (participants were enrolled within the “slap-dem study”, a population-based study) sampling: convenience sampling non-pharmacological intervention (tele-medicine assessment) multidisciplinary tele-medicine assessment (using tele/cell phone) duration/ intensity: 1 week consultation; 60-90 minutes televisits quantitative measurements: demographic data clinical assessment data frontotemporal dementia ratings (cdr-ftd) signs/symptoms of covid-19 infection qualitative measurements: participants’ opinions of the telemedicine interview inability of tele-medicine physician to perform both a physical and neurological examination, the difficulties in the evaluating some items (e.g., language assessment), unavailability of devices, and the inability to provide any support due to the outbreak restrictions. di lorito (2021), england to identify participants in early dementia that video delivery program worked, which was designed for promoting activity, independence, and stability to highlight this program’s benefits and its challenges. follow up qualitative study. sample: people with dementia (n=5) and their caregivers (n=5) from a previously established exercise and functional activities of daily living program sampling: purposive sample non-pharmacological intervention (activity therapy) sensory stimulation intervention the praised through a video consultation platform called as q health. praised is a tailored program of physical, dual-task exercises, and functional activities of daily living delivered. qualitative measurements: experience about the praised users’ poor it skills and resources. ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 258 duration/ intensity: four months duraperez (2022), spain to explore the impact of the covid-19 outbreak on cognition, quality of life, perceived health status, and depression in older people with mild cognitive impairment or dementia cohort study sample: participants with mild cognitive impairment or mild dementia (n=151) sampling: sample from previously established two randomised control trials non-pharmacological intervention (tele-medicine assessment) assessment of cognition, quality of life, perceived health status, and depression using telephones duration/ intensity: six months quantitative measurements: demographic data cognition (mmse), quality of life (qol-ad), depression (gds), stress (pss). health perceptionmanagement (ie, change in living arrangements due to lockdown, presence of covid-19 symptoms, frequency of access to covid-19 information); coping-stress tolerance (ie, selfperceived mental health and well-being and mood); self-perceived alterations in usual sleep patterns. technology enthusiasm and technology anxiety (techph). none ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 259 the use of information technology (smartphone, tablet, television, laptop) and their uses (informative, cognitive, entertainment, and socialization). qualitative measurements: copingstress tolerance, activity-exercise, and role-relationships gareri, 2022 italy to evaluate whether outpatient and home care services with remote monitoring and consultation could mitigate the impact of the covid-19 pandemic on the mental and affective status, perceived wellbeing, and personal capabilities of outpatient and home care patients with interventional study sample: ambulatory outpatients (n=52) and home care patients (38) receiving care from the centre for cognitive disorders and dementia sampling: convenience sampling non-pharmacological intervention (tele-consultation) routine visits via video call duration/ intensity: three months quantitative measurements: cognition (mmse), functional capabilities (adl, iadl), comorbidities and their impact on patients’ health (cirs), mood (gds), perceived quality (euroqol-5d) possible behavioural disorders (e.g., aggression and irritability), changes in sleep, dietary and bowel habits living arrangement, presence of carer, food purchasing none ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 260 cognitive disorders the use of personal protective equipment, the need for workers or patients to quarantine in the event of suspected/ overt sars-cov-2 infection, effects of social distancing, psychological reactions to isolation goodmancasanova (2021), spain to explore the impact of confinement on the physical and mental health and well-being of communitydwelling older people with mild cognitive impairment or mild dementia, to provide television-based and telephonebased health and social support, and to study the effects of a television-based assistive integrated technology (tvassistdem). randomized clinical trial sample: communitydwelling older adults with mild cognitive impairment or mild dementia (n=93) from tv-assistdem study groups: intervention group (n=47, 51%) and control group (n=46, 49%) sampling: sample from previously establish randomized experimental sample and control group non-pharmacological intervention (activity therapy) cognitive intervention/ sensory stimulation intervention tv-assistdem to support health and social status, improve the qol and provide relief to caregiver (e.g., memory games, videos of physical activity, enables the communication with loved ones, information provision) the researchers interviewed the participants using the telephonebased survey. during each interview, when necessary, health information, updates in tvassistdem and counselling was provided by the health professionals regarding covid-19. quantitative measurements: functional health patterns (gordon’s functional health patterns) knowledge of the covid-19 situation and health and social services qualitative measurements: experiences of copingstress tolerance, exercise, and rolerelationship patterns potential limitations include gathering limited information from a single call, overloading with excessive information or long-time interviews ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 261 duration/ intention: follow-up visits at 6 and 12 months/ mean duration of the telephone calls: 12 minutes and 4 seconds lai (2020), hong kong to evaluate whether supplementary tele-health via videoconferencing platforms could bring additional benefits to carerecipient with neurocognitive disorder and their spousal caregivers at home. pretest posttest interventional study sample: of people with neurocognitive disorder and their caregiver (n= 60 dyads) from an activity daycare centre for older adults sampling: convenience sampling non-pharmacological intervention (tele-communication intervention) carers in the intervention and control groups received a weekly care service via telephone (relevant to older adults’ wellbeing of community living, focusing on healthy ageing, psychosocial needs, and physical well-being) care recipients and caregiver in the intervention group received (both) weekly health services delivered through video communication duration/ intensity: weekly telephone (30 minutes per session). quantitative measurements: a) cognition (chinese versions of moca) memory and behavior problem (rmbpc) quality of life (qolad) none lai (2022), taiwan to evaluate the effects of the tele-health intervention program on home-dwelling persons with dementia or mild nonrandomized two groups, pretestposttest sample: participants with mild cognitive impairment (n=1) or mild dementia (n=17) and their informal carers (10 and 8 in experimental and non-pharmacological intervention (tele-health intervention) health promotional activities for the experimental group duration/ intensity: 8 weeks quantitative measurements: neuropsychiatric symptoms (npi-q) none ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 262 cognitive impairment and on their primary carers during the covid-19 pandemic interventional study control groups, respectively) sampling: convenience sampling lima (2021), india to design, develop, and pilot testing of a multimodal robotic framework fusing verbal (contextual speech) and nonverbal (facial expressions) social cues, aimed to improve engagement in human-robot interaction and ultimately facilitate mental health telemedicine during and beyond the covid-19 pandemic. intervention development study sample: designing phaseuser centre design for: a) an expression recognition task with healthy participants (n=15) in the united kingdom, b) qualitative interviews for optimizing the design acceptability and cultural appropriateness to south india with people with dementia and their caregiver, professionals, and robotics researchers (n=?), c) emotion recognition tasks with people with dementia (n=14) and healthy older adults (n=26) testing of telerehabilitation intervention: people with dementia in south india (n=1) non-pharmacological intervention (assistive technology) development, designing and feasibility testing of using a robotic tele-medicine system to support the mental health of people with dementia in south india. testing with individuals living with dementia: interactions between the robot and participant included presenting the robot, discussing newspaper articles, and listening to music. duration/ intensity: 3 robotassisted cognitive engagement sessions (in testing with one person with dementia) designing phaseuser experience: emotion recognition user experience (ueq) testing with people with dementia: user observation (face scalemodified and ome-modified) network connection leads o lags and distortion of voice during remote human-robot sessions, dependency on the same network for clinicians and people with dementia, problems in streaming music, lack of a synthetically generated robot’s voice instead of a recognisable human one (may interfere with the acceptability of the robot) ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 263 sampling: convenience sampling panerai (2021), italy to assess the efficacy of telephone support for patients who had benefited from previous rehabilitation interventions in an institute and who were required to stay at home because of the public health restrictions adopted during the covid-19 outbreak. to assess changes in stress in their primary carers. non randomized interventional comparison study sample: patients with neurodegenerative disorders groups: experimental group (n=14) and control group (n=13) their caregiver were divided into group one and group two. (the included participants were previously diagnosed as alzheimer’s disease, vascular dementia, ftd, mixed dementia or other types of dementia). sampling: participants were divided into the groups based on their preference to participate in the intervention study nonpharmacological intervention (cognitive intervention) telephone-based reality orientation therapy [rot] duration/ intensity: 10 sessions over four weeks quantitative measurements: baseline data cumulative illness rating (cirs) activities of daily living (katz index of independence in activities of daily living) and lawton instrumental activities of daily living scale) mood (ham-d, csdd) neuropsychiatric symptoms (npi–q) cognition (telephonemmse) none ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 264 vellani, (2022) canada to determine the feasibility, preliminary efficacy, and acceptability of the voice your values, a tailored advance care planning intervention. pilot study sample: communitydwelling older people with mild dementia and more than 65 years or older enrolled as a caregiver trusted individual (friend or family) dyad (n=21 dyads) sampling: none reported non-pharmacological intervention (videoconferencing intervention) sharing participants’ perspectives on living with dementia provision of tailored education, and coaching to think about, and share participants’ values and wishes for future care related to being in a terminal and/or vegetative state duration/ intensity: two sessions feasibility did not report in this article quantitative measurements acceptability: tei experience with videoconferencing: vep-q, vep-r qualitative measurements diary log: acceptability and experience with videoconferencing network issues due to living in rural areas and winter storms environmental factors such as unexpected visitors (e.g., mail delivery) or smoke alarms notes: adl, activities of daily living; cirs, cumulative illness rating scale; cdr-ftd, clinical dementia rating scale–frontotemporal dementia; csdd, cornell scale for depression in dementia; euroqol-5d, euro quality of life; ftd, frontotemporal lobar dementia; gds, geriatric depression scale; ham-d, hamilton rating scale for depression; iadl, instrumatal activites on daily living; mmse, mini mental state examination; moca, montreal cognitive assessment; ome, observational measure of engagement; praised, promoting activity, independence and stability in early dementia; pss, percived stress scale; ome, observational measure of engagement; rmbpc, revised memory and behavior problem checklist; rot, reality orientation therapy; techph, the instrument for measuring older people’s attitudes toward technology; tei, treatment evaluation inventory, tv-assistdem, television-based assistive integrated service; veq-p, virtual experience questionnaire-participants; veq-r, virtual experience questionnaire-researcher, ueq, user experience questionnaire ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 265 table 2. technologies and purpose of tele-rehabilitation study technology of telerehabilitation other technologies involved purposes of telerehabilitation results of tele-rehabilitation intervention quality appraisal score* arighi et al. (2021) video call using microsoft team if failed, phone call sending microsoft teams and contacting participants via mail and phone calls to monitor and provide dementiaspecific care this study reported that the successful tele-visits rate was 68.5%, and failed tele-visits rate was 31.5%. successful tele-visits for patients with young carers was 80%, and for patients with the same generation and young carers was 95%. among patients with young carers, tele-visit without the presence of young carer successful tele-visit was 49%, with the presence of young carer successful tele-visit was 86%. the presence of a carer of young carer significantly influenced tele-visit success (p < 0.001, or 5.14, confidence interval 1.98–13.38). 2 benaque et al. (2020) video-conference platforms (whatsapp, skype, teams, facetime) if impossible, over the phones none. to monitor and provide dementiaspecific care among scheduled visits, 71% were videoconferencing, and 29% were telephone calls. videoconferences were conducted using whatsapp (86%), skype (12%) and facetime (2%). 75% of televisits were equal to or better than face-to-face consultations (perception of health professionals). after week 16, 78% of the planned tele-visits were conducted. 1 brandão (2021), brazil zoom sessions whatsapp groups for sending reminders whatsapp video for conducting sessions in the first month and calling the participants regularly to provide supportive care for people with dementia family members supported the participants during sessions. pets also participated, which was a fun activity. home utensils were also used and it engaged the participants in meaningful social sensory experiences. a virtual mate circle was included in the sessions and it offerd a virtual hot tea drink for the participants. sensory challenges for digital inclusion included hearing difficulties, positioning the tablet correctly, 4 ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 266 and difficulties in learning to activate the microphone and camera to troubleshot technological problems. cognitive challenges for digital inclusion were related to memory and executive difficulties (forgot meetings and did not check messages). participants perceived the program as supportive. feelings of belonging, feelings of connectedness and perceived learning were achieved. playful living program was feasible in terms of recruitment, retention, attrition, and acceptability for brazilian older adults with and without stroke and dementia induced cognitive impairments. capozzo et al. (2020) patients refused video. therefore, telephonebased assessment was conducted the evaluation survey via email or whatsapp to monitor and provide dementiaspecific care 88% of respondents were satisfied with the clinical interview made by the neurologist. 90% of them expressed their willingness to continue teleconsultation. 88% were reported about saving money by avoiding travelling. significant worsening was reported in behaviour (56% of respondents), language (47%), cognitive functions (53%), sleep disturbances (25%), and swallowing problems (9%) than the previous visit. a mild worsening of bradykinesia and limb rigidity was reported by 32% of participants than the previous visit. among the participants, no significant worsening since was reported for nutritional or respiratory changes tan the previous evaluation 1 di lorito et al. (2021) a video-calling platform using computers, tablets or smartphones inviting the participants to the intervention; and evaluating the intervention outcome via phone call, email, video calling to provide supportive care for people with dementia during the tele-interviews, the informants of the study revealed their perceptions and experiences over the exercise program as follows. the presence of a caregiver in a home is a key to face potential risks of exercises. video sessions enhance rapport and connectedness and allow to identify non-verbal cues. during the video session, 5 ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 267 the therapist did exercises with the client, therefore, the therapist became a modal. video sessions allow the therapist to facilitate progress and assess the improvement. it became a motivation for the care receiver. video sessions are not valuable as face-toface sessions due to not having a meaningful human connection. video sessions are not familiar or not easy to learn for older people than the younger generation. dura-perez et al. (2022) telephone none to monitor and provide dementiaspecific care to control covid-19 infection to provide supportive care for people with dementia the pandemic did not significantly impact cognition, quality of life, or mood. the impact of perceived stress was in a moderate level. 3 ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 268 gareri et al. (2022) telephone-based video call (whatsapp or face-time or, skype) use of ipad or laptop to monitor and provide dementiaspecific care to control covid-19 infection slightly worsening in activities in daily living, cognition, and the quality of life. behavioural changes (24.4%), with new-onset or worsening of anxiety and insomnia (17.7%) alzheimer’s dementia presented a greater worsening of the quality of life vascular dementia demonstrated a significant loss in instrumental activities in daily life 3 goodmancasanova et al. (2020) television-based assistive integrated technology (memory game, video visualization/ video calls) telephone base evaluations to monitor and provide dementiaspecific care to control covid-19 infection to provide supportive care for people with dementia intervention respondents performed more memory exercises than control respondents [52% (n=24) vs 17.4% (n=8); p<.001]. intervention group respondents kept pets and plants lower than control group [4% (n=2) vs 22% (n=10); p=0.01]. there were no significant differences between the intervention and control groups in variables associated with covid-19 (knowledge of covid19 situation, health services and social services). there were no differences in health management, mental health, well-being, or sleeping problems between the intervention group and the control group. 2 lai et al. (2020) experimental group: telephone and video communication apps (zoom, whatsapp, or facetime via mobile device) none to monitor and provide dementiaspecific care intervention group (video-conferencing) reported higher and largely stable cognitive functioning (in moca) than the control group (telephone only). moca scores was significantly higher in the intervention group at study’s end [moca: f(1,58) = 17.97, p <0.001, hp 2 = 0.24]. 2 ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 269 both experiment and control group: telephone to provide supportive care memory and behavior problem changes were not reported following the intervention. the intervention group did not show a falling trend in qol, which was observed in the control group. the intervention group enjoyed a higher qol than the control group. qol-ad scores were significantly higher in the intervention group at study’s end [qol-ad: f(1,58) = 5.54, p <0.05, hp 2 = 0.09]. however, controlling baseline difference had rendered the post-test group difference in qolad no longer significant [f(1,57) = 2.44, p = 0.12, hp 2 = 0.04]. a high proportion (16 of 17) of care recipients with “pre-ncd” moca scores in the control group had attained the moca criterion for mild ncd in the study period. this trend was not seen in the intervention group. concerning the interaction between care recipient and carer, an association of moderate effect size was detected in the intervention group (measured based on study outcomes), but not in the control group. lai et al. (2022) digitally delivered, synchronous distance teaching class: experimental group telephone-based teaching: control group online survey (mode not reported) to provide supportive care the tele-health intervention program significantly increased the well-being of the participants. the participants in the experimental group had a significantly higher npi intensity score than those in the control group. the mean scores of the npi intensity decreased in the experimental group either an upward or an invariable trend in the control group. 2 lima et al. (2021) hybrid-face robotic system none to provide supportive care regarding the pilot testing with 1 person of dementia, in all three sessions, the participant (n=1) rated mood as “very happy” on the pre and post measures of the face scale before and after each 2 ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 270 session. the duration of engagement with the robot from session 1 (9 min 35 s) to session 3 (18 min 1 s) was longer. the participant had no difficulty talking to the robot. the participant was never disruptive during any of the sessions. panerai et al. (2021) telephone none to monitor and provide dementiaspecific care comparison of differences in pretest-posttest scores for the experiment group compared with control groups revealed that there was a significant decrease of npi-q (medium effect size for frequency and large effect size for severity) and both depression scales (csdd and ham-d) (a large effect sizes). furthermore, there was a significant increase of mmse (a large effect size) in the experimental group than in the control group. within group pretest–posttest comparisons, there was a significant improvement in the experimental group with a large effect size for depression (ham– d, z = 2.98, p = .0028, r = .80), neuropsychiatric symptoms (npi–q frequency, z = 2.52, p = .011, r = .67; npi–q severity, z = 2.80, p = .005, r = .75), and cognition (mmse, z = 3.23, p = .0012, r = .86). no significant differences were found in the control group for any of the measures. 4 vellani et al (2022) microsoft teams none to monitor and provide dementiaspecific care all participants reported the program as acceptable (tei, 54.7±8.9) they rated the video and sound quality as high and experienced minimum lags in the video older adults who lived with their trusted individuals were more likely to find the intervention acceptable compared to those who did not live with their trusted individuals (t = 3.559, p = 0.001, β = 0.323) this study was the first opportunity to participate in advance care planning. they learnt what to expect with the progression of dementia and how to prepare for it. 3 ihtp, 2(2), 240-271, 2022 cc by-nc-nd 4.0 issn 2563-9269 271 they had a chance to clarify their own thoughts about future care when the person with dementia is terminally ill or in a vegetative state and unable to speak for themselves participants’ opinions on videoconferencing were predominantly positive: it saved their time and cost during the covid-19 notes: * using mmat, mixed methods appraisal tool (total scores: 5)