Roles and Dynamics within Community Mental Health Systems During the COVID-19 Pandemic: A Qualitative Systematic Review and Meta-Ethnography.

Globally, COVID-19 had an immense impact on mental health systems, but research on how community mental health (CMH) systems and services contributed to the pandemic mental health response is limited. We conducted a systematic review and meta-ethnography to understand the roles of CMH services, determinants of the quality of CMH care, and dynamics within CMH systems during COVID-19. We searched and screened across five databases and appraised study quality using the CASP tool, which yielded 27 qualitative studies. Our meta-ethnographic process used Noblit and Hare's approach for synthesizing findings and applying interpretive analysis to original research. This identified several key themes. Firstly, CMH systems played the valuable pandemic role of safety nets and networks for the broader mental health ecosystem, while CMH service providers offered a continuous relationship of trust to service users amidst pandemic disruptions. Secondly, we found that the determinants of quality CMH care during COVID-19 included resourcing and capacity, connections across service providers, customized care options, ease of access, and human connection. Finally, we observed that power dynamics across the CMH landscape disproportionately excluded marginalized groups from mainstream CMH systems and services. Our findings suggest that while the pandemic role of CMH was clear, effectiveness was driven by the efforts of individual service providers to meet demand and service users' needs. To reprise its pandemic role in the future, a concerted effort is needed to make CMH systems a valuable part of countries' disaster mental health response and to invest in quality care, particularly for marginalized groups.

What is quality in long covid care? Lessons from a national quality improvement collaborative and multi-site ethnography.

BACKGROUND: Long covid (post covid-19 condition) is a complex condition with diverse manifestations, uncertain prognosis and wide variation in current approaches to management. There have been calls for formal quality standards to reduce a so-called "postcode lottery" of care. The original aim of this study-to examine the nature of quality in long covid care and reduce unwarranted variation in services-evolved to focus on examining the reasons why standardizing care was so challenging in this condition. METHODS: In 2021-2023, we ran a quality improvement collaborative across 10 UK sites. The dataset reported here was mostly but not entirely qualitative. It included data on the origins and current context of each clinic, interviews with staff and patients, and ethnographic observations at 13 clinics (50 consultations) and 45 multidisciplinary team (MDT) meetings (244 patient cases). Data collection and analysis were informed by relevant lenses from clinical care (e.g. evidence-based guidelines), improvement science (e.g. quality improvement cycles) and philosophy of knowledge. RESULTS: Participating clinics made progress towards standardizing assessment and management in some topics; some variation remained but this could usually be explained. Clinics had different histories and path dependencies, occupied a different place in their healthcare ecosystem and served a varied caseload including a high proportion of patients with comorbidities. A key mechanism for achieving high-quality long covid care was when local MDTs deliberated on unusual, complex or challenging cases for which evidence-based guidelines provided no easy answers. In such cases, collective learning occurred through idiographic (case-based) reasoning, in which practitioners build lessons from the particular to the general. This contrasts with the nomothetic reasoning implicit in evidence-based guidelines, in which reasoning is assumed to go from the general (e.g. findings of clinical trials) to the particular (management of individual patients). CONCLUSION: Not all variation in long covid services is unwarranted. Largely because long covid's manifestations are so varied and comorbidities common, generic "evidence-based" standards require much individual adaptation. In this complex condition, quality improvement resources may be productively spent supporting MDTs to optimise their case-based learning through interdisciplinary discussion. Quality assessment of a long covid service should include review of a sample of individual cases to assess how guidelines have been interpreted and personalized to meet patients' unique needs. STUDY REGISTRATION: NCT05057260, ISRCTN15022307.

Children's cognition and attitudes during long-term cancer treatment: an ethnographic study.

BACKGROUND: Cancer treatment for children is typically long-term and difficult, and the experience is unique for each child. When designing child-centred care, individuals' values and preferences are considered equally important as the clinical evidence; therefore, understanding children's thoughts and attitudes while they receive long-term treatment could offer valuable insights for better clinical practice. METHODS: We conducted long-term consecutive participatory observations and interviews with seven children, who were hospitalised and receiving cancer treatment for the first time. The daily observational data on those children's discourses, behaviours and interactions with health professionals were systematically collected and thematically examined. The analysis was expanded to explore significant narratives for each child to capture their narrative sequence over time. RESULTS: The initial analysis identified 685 narrative indexes for all observation data, which were categorised into 21 sub-codes. Those sub-codes were assembled into five main themes by thematic analysis: making promises with health professionals, learning about the treatment procedures through participation, taking care of oneself, increasing the range of activities one can perform and living an ordinary life. CONCLUSION: We observed a forward-looking attitude toward understanding cancer, accepting treatment and looking forward to the future among children undergoing in-hospital cancer treatment. In addition, the children developed cognitively, affectively and relationally throughout cancer treatment processes. These findings have implications for better clinical practice in child-centred care, including children's participation in shared decision-making in paediatric oncology.

Older adults experience of transition to the community from the emergency department: a qualitative evidence synthesis.

AIM: Older adults comprise a growing proportion of Emergency Department (ED) attendees and are vulnerable to adverse outcomes following an ED visit including ED reattendance within 30 days. Interventions to reduce older adults' risk of adverse outcomes following an ED attendance are proliferating and often focus on improving the transition from the ED to the community. To optimise the effectiveness of interventions it is important to determine how older adults experience the transition from the ED to the community. This study aims to systematically review and synthesise qualitative studies reporting older adults' experiences of transition to the community from the ED. METHODS: Six databases (Academic Search Complete, CINAHL, MEDLINE, PsycARTICLES, PsycINFO, and Social Science Full Text) were searched in March 2022 and 2023. A seven-step approach to meta-ethnography, as described by Noblit and Hare, was used to synthesise findings across included studies. The methodological quality of the included studies was appraised using the 10-item Critical Appraisal Skills Programme (CASP) checklist for qualitative research. A study protocol was registered on PROSPERO (Registration: CRD42022287990). FINDINGS: Ten studies were included, and synthesis led to the development of five themes. Unresolved symptoms reported by older adults on discharge impact their ability to manage at home (theme 1). Limited community services and unresolved symptoms drive early ED reattendance for some older adults (theme 2). Although older adults value practical support and assistance transporting home from the ED this is infrequently provided (theme 3). Accessible health information and interactions are important for understanding and self-managing health conditions on discharge from the ED (theme 4). Fragmented Care between ED and community is common, stressful and impacts on older adult's ability to manage health conditions (theme 5). A line of argument synthesis integrated these themes into one overarching concept; after an ED visit older adults often struggle to manage changed, complex, health and care needs at home, in the absence of comprehensive support and guidance. DISCUSSION/ CONCLUSION: Key areas for consideration in future service and intervention development are identified in this study; ED healthcare providers should adapt their communication to the needs of older adults, provide accessible information and explicitly address expectations about symptom resolution during discharge planning. Concurrently, community health services need to be responsive to older adults' changed health and care needs after an ED visit to achieve care integration. Those developing transitional care interventions should consider older adults needs for integration of care, symptom management, clear communication and information from providers and desire to return to daily life.

Tensions experienced by case managers working in home care for older adults in Quebec: first level analysis of an institutional ethnography.

BACKGROUND: Case managers play a vital role in integrating the necessary services to optimise health-related goals and outcomes. Studies suggest that in home care, case managers encounter tensions in their day-to-day work, that is, disjuncture between what they should do, in theory, and what they actually do, in practice. However, direct exploration of these tensions is lacking. As such, this study aimed to describe the tensions encountered by case managers in public home care for older adults in Quebec and their influence on day-to-day work. METHODS: An institutional ethnography was conducted through observations of work, interviews and a survey with case managers working in home care in Quebec. Data were analysed using institutional ethnography first-level analysis procedures. This included mapping the work sequences as well as identifying the tensions experienced by case managers through the words they used. RESULTS: Three main tensions were identified. First, case managers perceive that, despite working to return hospitalised older adults at home safely, their work also aims to help free up hospital beds. Thus, they often find themselves needing to respond quickly to hospital-related inquiries or expedite requests for home care services. Second, they are supposed to delegate the care to "partners" (e.g., private organisations). However, they feel that they are in effect managing the quality of the services provided by the "partners." Consequently, they go to great lengths to ensure that good care will be provided. Finally, they must choose between meeting organisational requirements (e.g., reporting statistics about the work, documenting information in the older adults' file, doing mandatory assessments) and spending time providing direct care. This often leads to prioritising direct care provision over administrative tasks, resulting in minimal reporting of essential information. CONCLUSION: The results are discussed using the three lenses of professional practice context analyses (i.e., accountability, ethics, and professional-as-worker) to formulate recommendations for practice and research. They suggest that, despite their important role, case managers have limited power in home care (e.g., with partners, with the hospital).

Ambiguous personhood: Paradoxes of social belonging in Danish nursing home care.

In oldest old age (generally considered to be from 85 years onwards), personhood is often called into question, impacting well-being as a result. Based on ethnographic fieldwork, this article examines the well-being of oldest old nursing home residents at the intersections of ageism, fraying personhood and fragile social belonging in Danish nursing home care. In Denmark personhood hinges on both independence and social belonging; or "fællesskab." We examine how these concepts are practiced in nursing home care. Taking its starting point in the distinction between the "inside world" of the nursing home and the "real world" outside, the article examines how processes of othering occur in nursing home care, imperilling resident personhood and opportunities for social belonging. We consider how oldest old residents navigate social belonging, finding it in turn life-sustaining and vexatious. We argue that tacit ageism permeates the nursing home, to the detriment of resident well-being, despite the best intentions of an aged care system that is structured to specifically maintain personhood.

What are the key influences and challenges around weight management faced by patients in UK adult secure mental health settings? A focused ethnographic approach.

OBJECTIVES: Excess weight is highly prevalent in secure (forensic) mental health services and impacts negatively on patients' physical and mental health. This study sought to identify the key influences and challenges around weight management in UK adult secure mental health settings. DESIGN: Qualitative focused ethnography. Analysis of written fieldnotes was undertaken through a combined inductive and deductive approach, informed by thematic analysis. SETTING: Low secure male mental health ward and associated patient activities and events, in a National Health Service Trust delivering mental health, intellectual disability and neurorehabilitation services in the UK. PARTICIPANTS: 12 males (primarily white British) on the low secure ward; additional male participants from low and medium secure services, who took part in group events and activities; and multidisciplinary low and medium secure services staff. Approximately 23 hours of observation were undertaken over a 6-month period from April 2022. RESULTS: Secure mental healthcare delivered an environment predisposing patients to excessive weight gain and sedentary behaviour, which was often perceived as inevitable. Key themes highlighted the heightened salience of food in secure settings; inadequacy of catered hospital food and shortcomings of alternative food options; limited physical activity opportunities; and a ward culture that was not conducive to healthy behaviours. Perceptions and behaviour towards the ethnographer were primarily positive and accepting. CONCLUSIONS: Weight management in secure services is a complex challenge. In future, whole setting-based interventions to promote healthy weight are likely to be required. These should integrate physical and mental health, incorporate underpinning determinants such as adequate staffing and a culture promoting weight management, and involve both patients and staff.

Extra/ordinary medicine: Toward an anthropology of primary care.

Primary care is at the forefront of healthcare delivery. It is the site of disease prevention and health management and serves as the bridge between communities and the health care system As ethnographers of primary care, in this article we discuss what is gained by situating anthropological inquiry within primary care. We articulate how anthropologists can contribute to a better understanding of the issues that emerge in primary care. We provide a review of anthropological work in primary care and offer empirical data from two ethnographic case studies based in the United States, one focused on social risk screening in primary care and the other examining the diagnosis and care of people with dementia in primary care. Through these cases, we demonstrate how research of and within primary care can open important avenues for the study of the multidimensionality of primary care. This multidimensionality is apparent in the ways the medical field addresses the social and structural experiences of patients, scope of practice and disciplinary boundaries, and the intersection of ordinary and extraordinary medicine that emerge in the care of patients in primary care.

Fluid professional boundaries: ethnographic observations of co-located chiropractors, osteopaths and physiotherapists.

BACKGROUND: Chiropractors, osteopaths and physiotherapists (COPs) can assess and manage musculoskeletal conditions with similar manual or physical therapy techniques. This overlap in scope of practice raises questions about the boundaries between the three professions. Clinical settings where they are co-located are one of several possible influences on professional boundaries and may provide insight into the nature of these boundaries and how they are managed by clinicians themselves. OBJECTIVES: To understand the nature of professional boundaries between COPs within a co-located clinical environment and describe the ways in which professional boundaries may be reinforced, weakened, or navigated in this environment. METHODS: Drawing from an interpretivist paradigm, we used ethnographic observations to observe interactions between 15 COPs across two clinics. Data were analysed using reflexive thematic analysis principles. RESULTS: We identified various physical and non-physical 'boundary objects' that influenced the nature of the professional boundaries between the COPs that participated in the study. These boundary objects overall seemed to increase the fluidity of the professional boundaries, at times simultaneously reinforcing and weakening them. The boundary objects were categorised into three themes: physical, including the clinic's floor plan, large and small objects; social, including identities and discourse; and organisational, including appointment durations and fees, remuneration policies and insurance benefits. CONCLUSIONS: Physical, social, organisational related factors made the nature of professional boundaries between COPs in these settings fluid; meaning that they were largely not rigid or fixed but rather flexible, responsive and subject to change. These findings may challenge patients, clinicians and administrators to appreciate that traditional beliefs of distinct boundaries between COPs may not be so in co-located clinical environments. Both clinical practice and future research on professional boundaries between COPs may need to further consider some of these broader factors.

Navigating Confidentiality Dilemmas in Student Support: An Institutional Ethnography Informed Study.

Introduction: School-level student support programmes provide students with pastoral care and support for academic, wellbeing and other issues often via a personal tutor (PT). PT work is a balancing act between respecting the confidential information divulged by students and doing what is expected in terms of accountability and duty of care. We aimed to explore how tutors manage this tension, with the aim of advancing understanding of student support programmes. Methods: This qualitative study was informed by an Institutional Ethnography approach. We conducted 11 semi-structured interviews with PTs from one medical school in Singapore. We considered how they worked in relation to relevant national and institutional-level policy documents and reporting guidelines. Data collection and analysis were iterative. Results: We crafted two composite accounts to illustrate the dilemmas faced by PTs. The first depicts a PT who supports student confidentiality in the same way as doctor-patient confidentiality. The second account is a PT who adopted a more mentoring approach. Both tutors faced confidentiality challenges, using different strategies to "work around" and balance tensions between accountability and maintaining trust. PTs were torn between school and student expectations. Discussion: Fostering trust in the tutor-student relationship is a priority for tutors but tensions between confidentiality, accountability and governance sometimes make it difficult for tutors to reconcile with doing what they think is best for the student. A more nuanced understanding of the concept of confidentiality may help support PTs and ultimately students.

Learning to teach with patients and caregivers: a focused ethnography.

BACKGROUND: Little is known about what happens when patients and caregivers are involved in an academic setting as co-teachers and how healthcare professionals approach a new model of partnership-based teaching. This study aimed to explore the learning and behavioural patterns of a group of healthcare professionals who were learning to teach with patients and caregivers as co-teachers in a post-graduate course. METHODS: A focused ethnographic study involving 11 health professionals was conducted. Data were collected through participatory observation during the course, individual semi-structured interviews, and a follow-up focus group. Taxonomic analysis was performed. RESULTS: Three categories were identified: 'group', 'role of narration' and 'applying co-teaching with patients and caregivers '. Specifically, heterogeneity, absence of hierarchies, and balanced relationships characterised the group dynamic and promoted partnership. Narration played a key role both in learning and in healthcare professionals' relationship with patients and caregivers and promoted emotional skills and self-awareness. Project planning and lessons simulations were essential aspects of the implementation process. CONCLUSIONS: This focused ethnography helped further understanding of the context of a specific project involving patients and caregivers as co-teachers in healthcare professional education. The development of emotional skills and self-awareness are the main learning patterns of co-teaching, and interprofessionalism and balanced relationships are the basis of the behavioural patterns. These patterns facilitated the involvement of patients and caregivers in health education.

[Suicide and medical practices: Assessing the way of life among Colombian coffee-growing rural men in mental health care]. / Suicidio y prácticas médicas: la valoración del modo de vida de hombres campesinos caficultores colombianos en la atención de la salud mental.

The aim was to understand the way of life and self-care practices in mental health among adult male farmers living in a municipality in the Risaralda department, located in the coffee axis of Colombia, marked by a high incidence of suicides. An ethnographic study was conducted between March and December 2021, employing a combination of methods including interviews, participant observation, document review, and field diaries. Economic and social aspects undergoing transformations were identified, impacting gender roles, family dynamics, and caregiving possibilities for these men. By observing how men discuss their suffering and the resources available to address it, it can be concluded that mental health practices function more as self-care resources, while health services often provide symptom-based care, neglecting attentive listening. These findings are valuable for shaping services and life care strategies that align with the conditions of rural men in Colombia.

El objetivo fue conocer el modo de vida y las prácticas de autocuidado en salud mental de los hombres adultos campesinos, que viven en un municipio del departamento de Risaralda en el eje cafetero de Colombia con alta incidencia de suicidios. Entre marzo y diciembre de 2021, se realizó un estudio etnográfico, haciendo uso de una combinación de métodos: entrevistas, observación participante, revisión documental y diario de campo. Se identificaron aspectos económicos y sociales cuyas transformaciones han afectado los roles de género, las dinámicas familiares y las posibilidades de cuidado para los hombres. Al observar cómo los hombres hablan de su sufrimiento y de los recursos con que cuentan para atenderlo, puede concluirse que las prácticas de salud mental se encuentran más bien como recursos de autoatención y los servicios de salud ofrecen atención basada en síntomas del cuerpo, de modo que abandonan la escucha. Estos hallazgos son útiles para pensar servicios y estrategias de cuidado de la vida que se adapten a las condiciones de hombres campesinos en Colombia.

Crafting Ethnographic Relationships During the COVID-19 Pandemic in Germany Using Voice-Based Technologies.

Drawing on a two-year ethnography of care practices during the COVID-19 pandemic in Germany, we discuss the affordances of voice-based technologies (smartphones, basic mobile phones, and landline telephones) in collecting ethnographic data and crafting relationships with participants. We illustrate how such technologies allowed us to move with participants, eased data collection through the social expectations around their use, and reoriented our attention to the multiple qualities of sound. Adapting research on the performativity of technology, we argue that voice-based technologies integrated us into participants' everyday lives while also maintaining physical distance in times of infectious sociality.

Wider institutional research cultures and their influence on patient and public involvement and engagement in health research - An institutional ethnography.

Focus on patient and public involvement and engagement (PPIE) is increasing in health policy and research governance. PPIE is considered by some to be a democratic right, and by others to be a way to improve health care and research outcomes and implementation. Most recently, policy makers, funders and (clinical) research institutions are making PPIE a strategic requirement for health research urging researchers to invite patients and relatives into their research activities. Our study is based in a Danish university hospital where PPIE has been introduced as one of five strategic research goals. We investigated how researchers experienced this new practice and how their research practices connect to the wider context of the Danish health care system. Ten cases were studied during a year using observations, interviews, and document analysis. As our method of inquiry, we used institutional ethnography to look at researchers' work from their perspective and to understand how PPIE practices are part of a larger institutional research culture reaching far beyond the individual. We found that current research culture has implications for the selection of patients and relatives and for what they are asked to do. Researchers who experienced that PPIE outcomes aided their existing research practices felt motivated. Researchers who engaged patients and relatives before it was a strategy, were ideologically driven and their approaches resulted in an increased diversity of inclusion and researcher assimilation. These findings add to the current knowledge on PPIE practices and help us understand that further development towards collaborative research practices require a change in key performance indicators and training and perhaps call for attention to our shared acceptance of knowledge generation in research.

Why is hospital discharge so difficult? Reconsidering patient trajectories in theory and practice: Insights from an ethnographic study of transitions in hip fracture care.

This paper combines translational mobilisation theory and assemblage thinking to elaborate the patient trajectory concept. Deploying ethnographic research on transitions in hip fracture care in Wales (2014-2016), it describes and explains the structures and logics that condition transition interfaces, how transition infrastructures enact patients and with what effects. Comparative analysis of transition in three distinctive assemblages offers new insights into the challenges of hospital discharge and opportunities for research and improvement.

Embodied decisions unfolding over time: a meta-ethnography systematic review of people with cancer's reasons for delaying or declining end-of-life care.

BACKGROUND: Barriers to accessing hospice and palliative care have been well studied. An important yet less researched area is why people approaching the end-of-life decline a referral when they are offered services. This review focused on synthesising literature on patients in the last months of life due to a cancer diagnosis who have declined a referral to end-of-life care. METHODS: Six academic databases were systematically searched for qualitative literature published between 2007 and 2021. Two researchers independently reviewed and critically appraised the studies. Using meta-ethnographic methods of translation and synthesis, we set out to identify and develop a new overarching model of the reasons patients decline end-of-life care and the factors contributing to this decision. RESULTS: The search yielded 2060 articles, and nine articles were identified that met the review inclusion criteria. The included studies can be reconceptualised with the key concept of 'embodied decisions unfolding over time'. It emphasises the iterative, dynamic, situational, contextual and relational nature of decisions about end-of-life care that are grounded in people's physical experiences. The primary influences on how that decision unfolded for patients were (1) the communication they received about end-of-life care; (2) uncertainty around their prognosis, and (3) the evolving situations in which the patient and family found themselves. Our review identified contextual, person and medical factors that helped to shape the decision-making process. CONCLUSIONS: Decisions about when (and for some, whether at all) to accept end-of-life care are made in a complex system with preferences shifting over time, in relation to the embodied experience of life-limiting cancer. Time is central to patients' end-of-life care decision-making, in particular estimating how much time one has left and patients' embodied knowing about when the right time for end-of-life care is. The multiple and intersecting domains of health that inform decision-making, namely physical, mental, social, and existential/spiritual as well as emotions/affect need further exploration. The integration of palliative care across the cancer care trajectory and earlier introduction of end-of-life care highlight the importance of these findings for improving access whilst recognising that accessing end-of-life care will not be desired by all patients.

Representations of an Ebola 'outbreak' through Story Technologies.

BACKGROUND: Attempts to understand biosocial phenomena using scientific methods are often presented as value-neutral and objective; however, when used to reduce the complexity of open systems such as epidemics, these forms of inquiry necessarily entail normative considerations and are therefore fashioned by political worldviews (ideologies). From the standpoint of poststructural theory, the character of these representations is at most limited and partial. In addition, these modes of representation (as stories) do work (as technologies) in the service of, or in resistance to, power. METHODS: We focus on a single Ebola case cluster from the 2013-2016 outbreak in West Africa and examine how different disciplinary forms of knowledge production (including outbreak forecasting, active epidemiological surveillance, post-outbreak serosurveys, political economic analyses, and ethnography) function as Story Technologies. We then explore how these technologies are used to curate 'data,' analysing the erasures, values, and imperatives evoked by each. RESULTS: We call attention to the instrumental-in addition to the descriptive-role Story Technologies play in ordering contingencies and establishing relationships in the wake of health crises. DISCUSSION: By connecting each type of knowledge production with the systems of power it reinforces or disrupts, we illustrate how Story Technologies do ideological work. These findings encourage research from pluriversal perspectives and advocacy for measures that promote more inclusive modes of knowledge production.

Conceptualisations of "good care" within informal caregiving networks for older people in rural South Africa.

Good care in social policy statements is commonly implied as familial and person-centred, provided by family members and focused on upholding the autonomy, dignity and respect of the care recipient. Policy consideration of the relational nature of caregiving, the sociomaterial determinants of good care, the practical knowledge of caregivers and responsibilities of the state, is limited. Drawing on the ethics of care theory and a care ecology framework, which conceptualises the dynamic interactions between formal and informal care "systems," we analysed ethnographic data of the interactions of 21 caregivers and their older care recipients in South Africa to understand how they conceptualised good care. Conceptualisations of good care included: having the right, altruistic and reciprocal, motivations; providing care frequently and consistently; and demonstrating hope for a better future through practical action. Caregivers also considered restricting autonomy a feature of good care, when doing so was perceived to be in the care recipient's best interest. Conceptualisations of good care were influenced by but also countered policy and cultural ideals. When they subverted policy values and practices, by overriding autonomy, for instance, caregivers' conceptualisations reflected their practical experiences of caregiving amidst gross material inadequacies, underpinned by deficiencies in the formal care system. We highlight the need for policies, interventions and theories of care that focus broadly on the care ecology and particularly on the "carescape" (formal care system). We advocate relational approaches that consider and balance the needs, desires and rights of caregivers and care recipients, and recognise caregivers' experiential knowledge, rather than person-centred approaches that focus exclusively on the care recipient.

Exploring fathers' experiences of caring for a child with complex care needs through ethnography and arts-based methodologies.

BACKGROUND: Although the number of children living with complex care needs (CCN) is increasing worldwide, there is limited data on the experience of fathers caring for children with CCN. This paper reports on findings specific to fathers' experiences of caring for their child with CCN and highlights recommendations provided for parents of children with CCN, service providers, and policymakers. The findings emerged from a larger study designed to examine how Canadian families of children with CCN participate in society. METHODS: We used the qualitative research approach of ethnography and arts-based methodologies (ecomaps and photovoice) as well as purposive and snowball sampling techniques. Four parents were engaged as advisors and twenty-nine fathers participated in interviews (all were married or in a relationship; age range of 28 to 55 years). In line with an ethnographic approach, data analysis involved several iterative steps including comparing data from the first, second, and third set of interviews and refining themes. RESULTS: One overarching theme, striving to be there for the child with CCN, was identified. Five supporting themes further exemplified how fathers strived to be there for their child: 1) contributing to the parental team through various roles; 2) building accessibility through adaptation; 3) engaging in activities with the child; 4) expressing admiration and pride in their children; and 5) meaning making. Recommendations for parents included making and nurturing connections and asking for help while recommendations for healthcare and social service providers included communicating authentically with families and listening to parents. Fathers also indicated that leadership and funding for programs of families of children with CCN should be priorities for policymakers. CONCLUSIONS: In addition to documenting fathers' active involvement in their child's care and development, our findings provide new insights into how fathers make participation in everyday life accessible and inclusive for their children. Study findings also point to 1) priority areas for policymakers (e.g., accessible physical environments); 2) factors that are critical for fostering collaborative care teams with fathers; and 3) the need for complex care teams in the adult health care system. Implications for those providing psychosocial support for these families are noted as well as knowledge gaps worthy of future exploration such as the role of diversity or intersectionality in fathering children with CCN.