Community perspectives on structural barriers to dying well at home in Canada.

OBJECTIVES: To analyze how structural determinants and barriers within social systems shape options for dying well at home in Canada, while also shaping preferences for dying at home. METHODS: To inform a descriptive thematic analysis, 24 Canadian stakeholders were interviewed about their views, experiences, and preferences about dying at home. Participants included compassionate community advocates, palliative care professionals, volunteers, bereaved family caregivers, residents of rural and remote regions, service providers working with structurally vulnerable populations, and members of francophone, immigrant, and 2SLGBTQ+ communities. RESULTS: Analysis of stakeholders' insights and experiences led to the conceptualization of several structural barriers to dying well at home: inaccessible public and community infrastructure and services, a structural gap in death literacy, social stigma and discrimination, and limited access to relational social capital. SIGNIFICANCE OF RESULTS: Aging in Canada, as elsewhere across the globe, has increased demand for palliative care and support, especially in the home. Support for people wishing to die at home is a key public health issue. However, while Canadian policy documents normalize dying in place as ideal, it is uncertain whether these fit with the real possibilities for people nearing the end of life. Our analysis extends existing research on health equity in palliative and end-of-life care beyond a focus on service provision. Results of this analysis identify the need to expand policymakers' structural imaginations about what it means to die well at home in Canada.

How initial policy responses to COVID-19 contributed to shaping dying at home preferences and care provision: key informant perspectives from Canada.

OBJECTIVES: In response to COVID-19's first wave, provincial governments rapidly implemented several public health directives, including isolation measures and care facility visitor restrictions, which profoundly affected healthcare delivery at the end of life and dying experiences and perceptions. The objective of this study was to identify implications of early policy changes for dying at home. METHODS: Analysis of interviews with 29 key informants with expertise in the policy and practice context of dying at home and care for those dying at home was conducted as part of a larger mixed-methods study on dying at home in Canada. RESULTS: Initial pandemic policy responses, especially visitor restrictions and limitations to home care services, shaped dying at home in relation to three themes: (1) increasing preferences and demand for, yet constrained system ability to support dying at home; (2) reinforcing and illuminating systemic reliance on and need for family/friend caregivers and community organizations, while constraining their abilities to help people die at home; and (3) illuminating challenges in developing and implementing policy changes during a pandemic, including equity-related implications. CONCLUSION: This study contributes to broader understanding of the multifaceted impacts of COVID-19 policy responses in various areas within Canadian healthcare systems. Implications for healthcare delivery and policy development include (1) recognizing the role of family/friend caregivers and community organizations in end-of-life care, (2) recognizing health inequities at the end of life, and (3) considering possible changes in future end-of-life preferences and public attitudes about dying at home and responsibility for end-of-life care.

Cumulative Disempowerment: How Families Experience Older Adults' Transitions into Long-Term Residential Care.

Although emerging research links family experiences with long-term residential care (LTRC) transitions to structural features of health care systems, existing scholarship inadvertently tends to represent the transition as an individual problem to which families need to adjust. This secondary qualitative analysis of 55 interviews with 22 family members caring for an older adult engages a critical gerontological lens. A concept of cumulative, structural empowerment informs this analysis of families' experiences across a broad continuum of older adults' moves into LTRC. Leading up to transitions, families have little power over home care services, and family members have little control over their involvement in care provision. Some families respond by making choices to refuse publicly provided service options, therein both resisting and reinforcing broader relations of power. Expectations for family involvement in LTRC placement decisions were incongruent with some families' experiences, reinforcing a sense of powerlessness compounded by the speed with which these decisions needed to be made. A broad temporal analysis of transitions highlights LTRC transitions as a process of cumulative family disempowerment connected to broader formal care structures alongside emphases on aging in place and familialism that characterize LTRC as the option of last resort.

Where would Canadians prefer to die? Variation by situational severity, support for family obligations, and age in a national study.

BACKGROUND: Death at home has been identified as a key quality indicator for Canadian health care systems and is often assumed to reflect the wishes of the entire Canadian public. Although research in other countries has begun to question this assumption, there is a dearth of rigorous evidence of a national scope in Canada. This study addresses this gap and extends it by exploring three factors that moderate preferences for setting of death: situational severity (entailing both symptoms and supports), perceptions of family obligation, and respondent age. METHODS: Two thousand five hundred adult respondents from the general population were recruited using online panels between August 2019 and January 2020. The online survey included three vignettes, representing distinct dying scenarios which increased in severity based on symptom management alongside availability of formal and informal support. Following each vignette respondents rated their preference for each setting of death (home, acute/intensive care, palliative care unit, nursing home) for that scenario. They also provided sociodemographic information and completed a measure of beliefs about family obligations for end-of-life care. RESULTS: Home was the clearly preferred setting only for respondents in the mild severity scenario. As the dying scenario worsened, preferences fell for home death and increased for the other options, such that in the severe scenario, most respondents preferred a palliative care or hospice setting. This pattern was particularly distinct among respondents who also were less supportive of family obligation norms, and for adults 65 years of age and older. CONCLUSIONS: Home is not universally the preferred setting for dying. The public, especially older persons and those expressing lower expectations of families in general, express greater preference for palliative care settings in situations where they might have less family or formal supports accompanied by more severe and uncontrolled symptoms. Findings suggest a) the need for public policy and health system quality indicators to reflect the nuances of public preferences, b) the need for adequate investment in hospices and palliative care settings, and c) continuing efforts to ensure that home-based formal services are available to help people manage symptoms and meet their preferences for setting of death.

A Social Capital Perspective on Social-Medical Collaboration in Community End-of-Life Care in Hong Kong.

Recent developments in Hong Kong end-of-life (EOL) care have shifted some caring work for dying people and their families to cross-disciplinary collaboration in community settings. Social-medical collaboration becomes especially important. This study aims to use social capital as an analytical lens to examine the processes and mechanisms of social-medical collaboration in EOL care and elucidate practice implications for engaging in the care of dying people and their families. Qualitative data were collected using in-depth interviews. Three major conceptual categories were generated through grounded theory methodology. They are (a) establishing trust through keeping clear and simple boundaries, (b) cultivating mutuality in the multi-disciplinary meeting, and (c) fostering social-medical collaboration in EOL care. Each new stage is based on the social capital accumulated in the previous one through the social interactions between professionals. Such theorization also provides insights into how to achieve effective social-medical collaboration in this context.

Home care clients: a research protocol for studying their pathways.

BACKGROUND: Enhancing non-clinical home care supports and services for older adults to live well is a strategic priority in developed countries, including Canada. Underpinning these supports and services are structures of care that are reflected in home care policies, programs and practices within jurisdictions. These approaches to care exist at multiple levels and inform interactions, perceptions, and care assessment, planning and provision, ultimately shaping the supports that are delivered. Jurisdictional differences in approaches to care mean that pathways through home care systems may differ, depending on where one lives. The goal of this study is to understand how approaches to care shape the pathways of older adult home care clients with chronic and long term conditions in two Canadian health jurisdictions. METHODS: This longitudinal mixed-methods study has three interrelated research streams informed by aspects of the socio-ecological framework. We will examine client pathways using a retrospective analysis of home care assessment data (Resident Assessment Instrument- Home Care) in two health authorities (Client/Service Data Stream). We will analyze interview data from older adult home care clients and a cluster of each client's family or friend caregiver(s), home support worker(s), care/case coordinator(s) and potentially other professionals at up to three points over 18 months using a prospective qualitative comparative case study design (Constellation Data Stream). We will review home care policies relevant to both health authorities and interview key informants regarding the creation and implementation of policies (Policy Stream). Our study will apply an integrated knowledge translation (iKT) approach that engages knowledge users in research design, analysis and interpretation to facilitate relevancy of results. DISCUSSION: Applying a mixed-method research design to understand approaches to care within and between two jurisdictions will contribute to the evidence base on older adult home care client pathways. Study results will identify how potential differences are experienced by clients and their families. An understanding of the policies will help to contextualize these findings. The iKT model will ensure that findings are useful for strategic planning and decision-making, and supporting changes in care practice.

Older Adults' Narratives of Seeking Mental Health Treatment: Making Sense of Mental Health Challenges and "Muddling Through" to Care.

Older adults who experience challenges related to mental health are unlikely to seek professional help. The voices of older adults who have navigated through mental health issues and systems of care to arrive at psychological treatment are less well understood. We conducted individual interviews with 15 adults aged 61 to 86 who sought psychological treatment. Interviews were audio-recorded, transcribed, and analyzed using narrative methods. We identified several main storylines that describe the meaning-making and treatment-seeking journeys of older adults: resistance to being labeled with mental health problems (telling stories of resistance, defining mental health issues in mysterious and uncontrollable terms, and experiencing internal role conflict); muddling through the help-seeking process (manifestations of chaos and system-level barriers); and emotional reactions to psychological treatment (hope, fear, and mistrust). Findings add to the literature base in the area of narrative gerontology, and highlight the complex experiences that older adults face when seeking psychological treatment.

Applying the concept of structural empowerment to interactions between families and home-care nurses.

Interpretations of family carer empowerment in much nursing research, and in home-care practice and policy, rarely attend explicitly to families' choice or control about the nature, extent or length of their involvement, or control over the impact on their own health. In this article, structural empowerment is used as an analytic lens to examine home-care nurses' interactions with families in one Western Canadian region. Data were collected from 75 hrs of fieldwork in 59 interactions (18 nurses visiting 16 families) and interviews with 12 nurses and 11 family carers. Generally, nurses prioritized client empowerment, and their practice with families appeared oriented to supporting their role and needs as carers (i.e. rather than as unique individuals beyond the caring role), and reinforcing the caring role through validation and recognition. Although families generally expressed appreciation for these interactions, a structural empowerment lens illustrates how the broad context of home care shapes the interpretation and practice of empowerment in ways that can, paradoxically, be disempowering for families. Opportunities to effectively support family choice and control when a client is being cared for at home are discussed.

Using a Flexible Diary Method Rigorously and Sensitively With Family Carers.

Health and social science researchers are increasingly interested in the range of new possibilities and benefits associated with diary methods, particularly using digital devices. In this article, we explore how a flexible diary method, which enables participants to choose the device (i.e., paper notebook, tablet, or computer) and medium (i.e., text, photographs, sketches) through which they narrate their experiences, can be used to promote sensitive and rigorous research engagement with family carers to people with dementia. We used a diary interview method with 10 carers over the course of 6 weeks to explore how they experience and interpret the changing behaviors of their cognitively impaired kin. We reflect on how the quality of diary data can be enhanced alongside the ethical dimensions of research with carer populations, through different forms of diary keeping, regular interaction with participants, reflexive practice, and follow-up interviews.

Fear, Defensive Strategies and Caring for Cognitively Impaired Family Members.

One topic rarely addressed in the literature on older adults and interpersonal violence is the violence that can be experienced by family carers in relationship with a person living with cognitive impairment. This violence tends to remain hidden and is rarely framed as intimate partner violence. We examine how situations of intimidation and violence invoked fear in family carers and how they interpreted and reacted to these circum- stances. Interview and diary data were collected from family members who had previously or were currently experiencing some form of aggression in caring for someone with cognitive impairment or dementia. Drawing on discussions of fear and applying the analytic lens of defensive strategies, we explore how these carers responded to situations of intimidation and violence.

Dynamin 1- and 3-Mediated Endocytosis Is Essential for the Development of a Large Central Synapse In Vivo.

UNLABELLED: Dynamin is a large GTPase crucial for endocytosis and sustained neurotransmission, but its role in synapse development in the mammalian brain has received little attention. We addressed this question using the calyx of Held (CH), a large nerve terminal in the auditory brainstem in mice. Tissue-specific ablation of different dynamin isoforms bypasses the early lethality of conventional knock-outs and allows us to examine CH development in a native brain circuit. Individual gene deletion of dynamin 1, a primary dynamin isoform in neurons, as well as dynamin 2 and 3, did not affect CH development. However, combined tissue-specific knock-out of both dynamin 1 and 3 (cDKO) severely impaired CH formation and growth during the first postnatal week, and the phenotypes were exacerbated by further additive conditional knock-out of dynamin 2. The developmental defect of CH in cDKO first became evident on postnatal day 3 (P3), a time point when CH forms and grows abruptly. This is followed by a progressive loss of postsynaptic neurons and increased glial infiltration late in development. However, early CH synaptogenesis before protocalyx formation was not altered in cDKO. Functional maturation of synaptic transmission in the medial nucleus of the trapezoid body in cDKO was impeded during development and accompanied by an increase in the membrane excitability of medial nucleus of the trapezoid body neurons. This study provides compelling genetic evidence that CH formation requires dynamin 1- and 3-mediated endocytosis in vivo, indicating a critical role of dynamin in synaptic development, maturation, and subsequent maintenance in the mammalian brain. SIGNIFICANCE STATEMENT: Synaptic development has been increasingly implicated in numerous brain disorders. Dynamin plays a crucial role in clathrin-mediated endocytosis and synaptic transmission at nerve terminals, but its potential role in synaptic development in the native brain circuitry is unclear. Using the calyx of Held, a giant nerve terminal in the mouse brainstem, we evaluated the role of dynamin in this process by using tissue-specific knock-out (KO) of three different dynamin isoforms (dynamin 1, 2, and 3) individually and in combination. Our data demonstrated that dynamin is required for the formation, functional maturation, and subsequent survival of the calyx of Held. This study highlights the important role of dynamin-mediated endocytosis in the development of central synapses in the mammalian brain.

The Emotional Labor of Personal Grief in Palliative Care: Balancing Caring and Professional Identities.

The paid provision of care for dying persons and their families blends commodified emotion work and attachments to two often-conflicting role identities: the caring person and the professional. We explore how health care employees interpret personal grief related to patient death, drawing on interviews with 12 health care aides and 13 nurses. Data were analyzed collaboratively using an interpretively embedded thematic coding approach and constant comparison. Participant accounts of preventing, postponing, suppressing, and coping with grief revealed implicit meanings about the nature of grief and the appropriateness of grief display. Employees often struggled to find the time and space to deal with grief, and faced normative constraints on grief expression at work. Findings illustrate the complex ways health care employees negotiate and maintain both caring and professional identities in the context of cultural and material constraints. Implications of emotional labor for discourse and practice in health care settings are discussed.

What family caregivers learn when providing care at the end of life: a qualitative secondary analysis of multiple datasets.

OBJECTIVE: Although growing numbers of family members provide end-of-life care for dying persons, caregivers frequently report lacking essential information, knowledge, and skills. This analysis explicates what family members learn during the process of providing end-of-life care. METHOD: Four qualitative interview studies of family caregivers to those at the end of life (n = 156) formed the basis of a secondary data analysis. RESULTS: Thematic and cross-comparative analyses found three general kinds of learning that were described-knowledge about: (1) the situation and the illness (including what to expect), (2) how to provide care, and (3) how to access help. Learning gaps, preferences, and potential inequities were identified. Further, in some instances, participant talk about "learning" appears to reflect a meaning-making process that helps them accept their situation, as suggested by the phrase "I have had to learn." SIGNIFICANCE OF RESULTS: Findings can inform the development of individualized educational programs and interventions for family caregivers.

Person-Centered Home Care: Exploring Worker-Client Relationships Using an Intersectional and Critical Disability Framework.

More research is needed into how "person-centered care" (PCC) manifests in home care (HC) worker-client relationships. Qualitative data were collected at three time points from twelve HC workers and others to better understand how approaches to care shape the pathways of older adult HC clients with chronic conditions in two Canadian health jurisdictions. This paper uses critical disability and intersectionality frameworks to highlight ways in which PCC enables social and instrumental benefits for workers' and clients. It also exposes difficulties in being flexible and developing interpersonal relationships because of HC policies. Workers also acknowledged risks when trying to prioritize client preferences, sometimes drawing distinctions between reasonable and unreasonable demands. Implications for enhanced training and support for workers around navigating flexibility and boundaries and using a relational approach to PCC are discussed, as are implications for policy-making that protect all parties.

Exploring space and practices of control in long-term residential care violence prevention strategies.

Long-term residential care (LTRC) should be a safe place to work and to live, but it can be a site of violent situations for older people and staff. In this article, we draw on critical geographies, aging, and violence research to analyze how staff perceive, manage, and control the risk of violence in LTRC. Specifically, we explore the role of space as an instrument of control in places of care; the language of risk and risk containment in these places; and how movement figures into management of the risk of violence. Data included telephone and web-based semi-structured interviews with 29 staff in two Canadian provinces from 2021 to 2023, which were analyzed inductively. LTRC staff described having access to and support from other staff as an important feature of safe places. They also emphasized visibility, opportunities to escape from violent or threatening situations, being cognizant of objects that may be used as weapons and moving some residents to other tables, rooms, or specialized units. Finally, some staff acknowledged tensions between person-centered care and protecting staff and resident safety. Our analysis raises concerns about whether the management of space, objects, and activities employed to promote safety contribute to the care and dignity of older people. By drawing attention to the role of space, place, and risk containment in managing violent situations, we illustrate the important contributions of critical geography in troubling institutional care for older people.

Family caregiver learning--how family caregivers learn to provide care at the end of life: a qualitative secondary analysis of four datasets.

BACKGROUND: Family caregivers are assuming growing responsibilities in providing care to dying family members. Supporting them is fundamental to ensure quality end-of-life care and to buffer potentially negative outcomes, although family caregivers frequently acknowledge a deficiency of information, knowledge, and skills necessary to assume the tasks involved in this care. AIM: The aim of this inquiry was to explore how family caregivers describe learning to provide care to palliative patients. DESIGN: Secondary analysis of data from four qualitative studies (n = 156) with family caregivers of dying people. DATA SOURCES: Data included qualitative interviews with 156 family caregivers of dying people. RESULTS: Family caregivers learn through the following processes: trial and error, actively seeking needed information and guidance, applying knowledge and skills from previous experience, and reflecting on their current experiences. Caregivers generally preferred and appreciated a supported or guided learning process that involved being shown or told by others, usually learning reactively after a crisis. CONCLUSIONS: Findings inform areas for future research to identify effective, individualized programs and interventions to support positive learning experiences for family caregivers of dying people.

A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions.

BACKGROUND: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for people with motor neurone disease may experience exceptional strain due to the usually rapid and progressive nature of this terminal illness. AIM: The purpose of this review is to synthesize contemporary research and provide a comprehensive summary of findings relevant to motor neurone disease family caregivers, as well as highlight some of the suggested interventions to alleviate burden and improve quality of life for this group. DESIGN: We conducted a comprehensive review of empirical research on family caregiving for people with motor neurone disease in peer-reviewed journals published in English, January 2000-April 2011. Fifty-nine studies met the inclusion criteria. RESULTS: This comprehensive literature review was consistent with previous research documenting the substantial burden and distress experienced by motor neurone disease family caregivers and revealed important points in the trajectory of care that have the potential for negative effects. The diagnosis experience, assisted ventilation, cognitive changes and end-of-life decision making create challenges within a short time. This review has also implicated the need for improvements in access to palliative care services and highlighted the absence of interventions to improve care. CONCLUSIONS: Caregiver burden and quality-of-life studies on motor neurone disease family caregivers have so far dominated the research landscape .The focus needs to be on developing interventions that provide direct practical and psychosocial supports for motor neurone disease family caregivers.

'The beauty and the less beautiful': exploring the meanings of dying at 'home' among community and practitioner representatives and advocates across Canada.

Background: Significant structural and normative pressures privilege the ideal of dying at home in Canada. At the same time, the social complexities and meanings associated with dying in particular locations remain critically unexamined. Objective: The aim of this study is to explore how diverse community members, including health and social care stakeholders, talk about preferences for locations of dying, with a particular focus on meanings of dying at home. Design: Semi-structured virtual interviews were conducted with 24 community and practitioner representatives and advocates across Canada during the Covid-19 pandemic. This included compassionate community advocates, palliative care professionals and volunteers, bereaved carers, and members of queer, rural, and immigrant communities. Participants were asked about their own preferences for location of dying and elaborated on these aspects with regard to their client population or community group. Results: Our analysis illuminates how meanings of dying at home are connected to previous experiences and perceptions of institutional care. As such, participants' perspectives are often framed as a rejection of institutional care. Dying at home also often signals potential for preserving ontological security and relational connection in the face of life-threatening illness. However, participants' expertise simultaneously informs a sense that dying at home is often unattainable. At times, this awareness underpins interpretations of both preferences and choices as contingent on considerations of the nature and type of illness, concerns about impacts on families, and available resources. Conclusion: The ideal of dying at home is nuanced by identity, relational, and structural contexts. Knowledge from this study can inform realistic and practical person-centered planning across care settings. It can also help create more representative public policy and health system quality indicators regarding a 'good death' that do not rely on or perpetuate undeveloped and unrealistic assumptions about dying, home, and family care.

Shifts in Homecare Nursing Practices and Their Implications for Families and Clients Receiving Palliative Care at Home.

Homecare nurses provide essential healthcare services at home. Changes in the nature of homecare nursing practice, however, suggest that older and frail homecare clients are less likely to have timely access to needed homecare nursing services as acute management takes priority. This has an impact on people's ability to be cared for and to die at home, a reported priority for many Canadians. This study highlights how health system changes may be constraining homecare nurses' abilities to enact care that is consistent with palliative care principles and philosophies, and calls for consideration of how shifts in homecare nursing practice have implications for families and clients receiving palliative care at home.

Legitimising and rationalising in talk about satisfaction with formal healthcare among bereaved family members.

While there is a fair amount of knowledge regarding substantive features of end of life care that family members desire and appreciate, we lack full understanding of the process whereby family members formulate care evaluations. In this article we draw on an analysis of interview data from 24 bereaved family members to explicate how they interpret their experiences and formulate evaluations of end of life care services. Most participants wove between expressing and legitimising dissatisfaction, and qualifying or diffusing it. This occurred through processes of comparisons against prior care experiences and expectations, personalising (drawing on personal situations and knowledge), collectivising (drawing on conversations with and observations of others) and attempting to understand causes for their negative care experiences and to attribute responsibility. The findings suggest that dissatisfaction might be diffused even where care is experienced negatively, primarily through the acknowledgement of mitigating circumstances. To a lesser extent, some participants attributed responsibility to the 'system' (policy and decision-makers) and individual staff members. The findings are discussed in relation to the theoretical understanding of satisfaction and evaluation processes and how satisfaction data might inform improvements to care quality.