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.

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.

'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.

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.

Conceptualizing violence in nursing home policy: A citizenship perspective.

Violence is a pervasive, yet often hidden, issue within nursing homes, affecting residents, family members and care workers. Critical exploration of embedded understandings of violence within public policies can provide important insights into how violence is viewed and addressed in nursing home environments as well as the implications of violence for different groups and alternative ways of framing and addressing violence. To this end, this study explored how violence is conceptualized within 45 nursing home policy texts from two Canadian provinces - Manitoba and Nova Scotia. Using a critical policy analysis approach and a citizenship lens, we identified four dominant constructions of policy 'targets' associated with specific rights and conceptualizations of violence. Policy documents construct residents as either vulnerable and in need of protection or as challenging and requiring behavior management. Care workers are constructed as either clinical risk managers, responsible for mitigating violence, or as employees with rights and responsibilities. Overall, violence prevention policies governing nursing homes are fragmented and convey conflicting conceptualizations of violence, associated with divergent rights and responsibilities. Our findings highlight the need for comprehensive violence prevention policies that affirm the rights of nursing home residents and care workers alike.

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.

Imperfect Solutions to the Neoliberal Problem of Public Aging: A Critical Discourse Analysis of Public Narratives of Long-Term Residential Care.

Public representations of long-term residential care (LTRC) facilities have received limited focus in Canada, although literature from other countries indicates that public perceptions of LTRC tend to be negative, particularly in contexts that prioritize aging and dying in place. Using Manitoba as the study context, we investigate a question of broad relevance to the Canadian perspective; specifically, what are current public perceptions of the role and function of long-term care in the context of a changing health care system? Through critical discourse analysis, we identify four overarching discourses dominating public perceptions of LTRC: the problem of public aging, LTRC as an imperfect solution to the problem, LTRC as ambiguous social spaces, and LTRC as a last resort option. Building on prior theoretical work, we suggest that public perceptions of LTRC are informed by neoliberal discourses that privilege individual responsibility and problematize public care.

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.

Cultivating mutuality: A qualitative study of community end-of-life care in Hong Kong.

In Hong Kong, death and dying are identified as a crucial public health issue, and as the healthcare system has developed, there has been a shift of some care for dying people and their families to cross-disciplinary collaboration in community settings. This shift enhances the salience of social relationships in non-medical forms of community-based end-of-life (EOL) care. The purpose of this paper is to contribute to knowledge about relational development in this regard. Abductive grounded theory methodology was used to examine the complex dynamics and mechanisms involved in cultivating mutuality between dying people (and their families) and volunteers and professionals in two community-based EOL social service agencies in Hong Kong. Qualitative data were collected between June and December 2019 using in-depth interviews with 14 agency practitioners and two theoretically sampled service users. Theoretical coding followed open coding to reach theoretical saturation. Cultivating mutuality was found to entail processes of finding social commonalities (and hiding differences), immersing in routines, supporting actualisation (granting the wishes of dying persons and their families) and engaging with clients' emotions (encouraging emotional release, demonstrating emotional involvement and actively listening). Findings offered a novel symbolic interactive and relational understanding of community EOL care practice. Contributions include theorising social processes in an intermediate stage of social capital and compassionate community development.

A realist review of the home care literature and its blind spots.

RATIONALE, AIMS AND OBJECTIVES: There is a large body of literature from all over the world that describes, analyzes, or evaluates home care models and interventions. The present article aims to identify the practical lessons that can be gained from a systematic examination of that literature. METHOD: We conducted a three-step sequential search process from which 113 documents were selected. That corpus was then narratively analysed according to a realist review approach. RESULTS: A first level of observation is that there are multiple blind spots in the existing literature on home care. The definition and delimitation of what constitutes home care services is generally under-discussed. In the same way, the composition of the basket of care provided and its fit with the need of recipients is under-addressed. Finally, the literature relies heavily on RCTs whose practical contribution to decisions or policy is disputable. At a second level, our analysis suggests that three mechanisms (system integration, case management and relational continuity) are core characteristics of home care models' effectiveness. CONCLUSION: We conclude by providing advice for supporting the design and implementation of stronger home care delivery systems. Our analysis suggests that doing so implies a series of sequential steps: identify what system-level goals the model should achieve and which populations it should serve; identify what type of services are likely to achieve those goals in order to establish a basket of services; and finally, identify the best ways and specific means to effectively and efficiently provide those services. Those same steps can also support ex-post evaluations of existing home care systems.

"Uncivilized children" or "victims of dementia": Interpretations of aggression in older assisted living tenants.

This study explores interpretations of interpersonal aggression involving older adults, through an analysis of semi-structured interview data from 13 assisted living (AL) tenants and 19 AL service and/or care workers. Differing relations (tenant-tenant and tenant-worker) shape the kinds of tenant actions experienced as problematic and/or aggressive. Tenants and workers invoke communal living, aging, and dementia as explanatory frames, in part to mitigate victimization experiences through normalization and neutralization. This was more prominent among workers, who are less able to enact empowering responses as they sought to keep working in difficult circumstances. Structural constraints, and the power and social hierarchies that contribute to victimization, generate interpretive responses that obscure fulsome and contextualized understandings of the problem while further reinforcing oppressive discourses including a sense of the inevitability of aggression in older adults-especially those living with dementia.

Cette étude explore les interprétations de l'agression interpersonnelle impliquant des adultes plus âgés, à travers une analyse des données d'entretiens semi-structurés de 13 locataires de résidences assistées (RA) et de 19 travailleurs de services et/ou de soins RA. Des relations différentes (locataire-locataire et locataire-travailleur) façonnent les types d'actions des locataires vécues comme problématiques et/ou agressives. Les locataires et les travailleurs invoquent la vie en communauté, le vieillissement et la démence comme cadres explicatifs, en partie pour atténuer les expériences de victimisation par la normalisation et la neutralisation. Ce phénomène est plus marqué chez les travailleurs, qui sont moins à même d'adopter des réponses autonomisantes lorsqu'ils cherchent à continuer à travailler dans des circonstances difficiles. Les contraintes structurelles, ainsi que le pouvoir et les hiérarchies sociales qui contribuent à la victimisation, génèrent des réponses interprétatives qui obscurcissent les compréhensions complètes et contextualisées du problème tout en renforçant les discours oppressifs, y compris le sentiment de l'inévitabilité de l'agression chez les personnes âgées - en particulier celles qui vivent avec la démence.

More than just a task: intimate care delivery in the nursing home.

Purpose: Intimate care procedures, such as bathing and toileting, are often regarded as simple, humble tasks. However, the provision of such care transforms a very private, personal activity into a social process. Understanding this complex process and the psychological impact it has on those providing and receiving care is critical in order to mitigate potential distress. The purpose of this study to examine the experience of delivering and receiving intimate personal care in the NH.Methods: A focused ethnographic approach with participant observation, semi-structured interviews, focus groups and drop-in sessions, document review, and field notes. Data were analysed using constant comparative analysis.Results: Quality care in this context is predicated on the care provider recognition of the emotional impact of care delivery on the care recipient. Our analysis identified that the overarching theme, of providing quality person-centred intimate care, requires creating and maintaining a relational space that promotes integrity.Conclusions: The provision of intimate personal care consists of a complex interplay at the level of resident/care provider interaction (micro level); health care organization (meso level); and policy (macro level). Each of these levels interacts with and influences the other two. The components identified in our model may provide the basis from which to further examine resident experiences of quality intimate personal care.

Caregiver identity in care partners of persons living with mild cognitive impairment.

Research on caregiver identity in the context of memory impairment has focused primarily on more advanced stages of the cognitive impairment trajectory (e.g., dementia caregivers), failing to capture the complex dynamics of early caregiver identity development (e.g., MCI; mild cognitive impairment caregivers). The aim of this study was to develop a nuanced understanding of how caregiver identity develops in family and friends of persons living with MCI. Using constructivist grounded theory (ConGT), this study explored caregiver identity development from 18 in-depth interviews with spouses (n = 13), children (n = 3), and friends (n = 2) of persons recently diagnosed with MCI. The overarching themes influencing MCI caregiver identity development included MCI changes, care-related experiences, "caregiver" interpretation, and approach/avoidance coping. These themes influenced how participants primarily identified, represented as I am a caregiver, I am not a caregiver, or liminality (i.e., between their previous identity and a caregiver identity). Irrespective of their current self-identification, all conveyed thinking about their "future self," as providing more intensive care. MCI caregiver identity development in family and friends is a fluid and evolving process. Nearly all participants had taken on care tasks, yet the majority of these individuals did not clearly identify as caregivers. Irrespective of how participants identified, they were engaging in care, and would likely benefit from support with navigating these changes and their new, ambiguous, and evolving roles.

Stories of violence and dementia in mainstream news media: Applying a citizenship perspective.

In this article, we analyze how mainstream news media frames violence in relation to dementia and the consequences of different frames for people living with dementia and their carers. Conceptually, the goal is to bring literature on citizenship and aggression into dialog with each other. Empirically, a total of 141 regional and national English-language mainstream Canadian news media articles (2008-2019) with a focus on dementia, violence, and aggression were analyzed. Analytically, we examine how different actors are portrayed as victims or perpetrators; how their histories (identities, belonging, and exclusion) are told; how dementia is used to explain events; and what types of expert knowledge and authorities are introduced to make sense of stories of violence in relationships of care. Our analysis points to the implications of media narratives for people with dementia as well as carers and researchers seeking to address stigma and call for change.

Aggression and Older Adults: News Media Coverage across Care Settings and Relationships.

Systematic, in-depth exploration of news media coverage of aggression and older adults remains sparse, with little attention to how and why particular frames manifest in coverage across differing settings and relationships. Frame analysis was used to analyze 141 English-language Canadian news media articles published between 2008 and 2019. Existing coverage tended towards stigmatizing, fear-inducing, and biomedical framings of aggression, yet also reflected and reinforced ambiguity, most notably around key differences between settings and relations of care. Mainstream news coverage reflects tensions in public understandings of aggression and older adults (e.g., as a medical or criminal issue), reinforced in particular ways because of the nature of news reporting. More nuanced coverage would advance understanding of differences among settings, relationships, and types of actions, and of the need for multifaceted prevention and policy responses based on these differences.

p53 Is Not Required for High CIN to Induce Tumor Suppression.

Chromosomal instability (CIN) is a hallmark of cancer. While low levels of CIN can be tumor promoting, high levels of CIN cause cell death and tumor suppression. The widely used chemotherapeutic, paclitaxel (Taxol), exerts its anticancer effects by increasing CIN above a maximally tolerated threshold. One significant outstanding question is whether the p53 tumor suppressor is required for the cell death and tumor suppression caused by high CIN. Both p53 loss and reduction of the mitotic kinesin, centromere-associated protein-E, cause low CIN. Combining both genetic insults in the same cell leads to high CIN. Here, we test whether high CIN causes cell death and tumor suppression even in the absence p53. Despite a surprising sex-specific difference in tumor spectrum and latency in p53 heterozygous animals, these studies demonstrate that p53 is not required for high CIN to induce tumor suppression. Pharmacologic induction of high CIN results in equivalent levels of cell death due to loss of essential chromosomes in p53+/+ and p53-/- cells, further demonstrating that high CIN elicits cell death independently of p53 function. IMPLICATIONS: These results provide support for the efficacy of anticancer therapies that induce high CIN, even in tumors that lack functional p53.

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.