"You can't die here": an exploration of the barriers to dying-in-place for structurally vulnerable populations in an urban centre in British Columbia, Canada.

BACKGROUND: One measure of quality in palliative care involves ensuring people approaching the end of life are able to receive care, and ultimately die, in the places they choose. Canadian palliative care policy directives stem from this tenet of autonomy, acknowledging that most people prefer to die at home, where they feel safe and comfortable. Limited research, however, considers the lack of 'choice' people positioned as structurally vulnerable (e.g., experiencing extreme poverty, homelessness, substance-use/criminalization, etc.) have in regard to places of care and death, with the option of dying-in-place most often denied. METHODS: Drawing from ethnographic and participatory action research data collected during two studies that took place from 2014 to 2019 in an urban centre in British Columbia, Canada, this analysis explores barriers preventing people who experience social and structural inequity the option to die-in-place. Participants include: (1) people positioned as structurally vulnerable on a palliative trajectory; (2) their informal support persons/family caregivers (e.g., street family); (3) community service providers (e.g., housing workers, medical professionals); and (4) key informants (e.g., managers, medical directors, executive directors). Data includes observational fieldnotes, focus group and interviews transcripts. Interpretive thematic analytic techniques were employed. RESULTS: Participants on a palliative trajectory lacked access to stable, affordable, or permanent housing, yet expressed their desire to stay 'in-place' at the end of life. Analysis reveals three main barriers impeding their 'choice' to remain in-place at the end of life: (1) Misaligned perceptions of risk and safety; (2) Challenges managing pain in the context of substance use, stigma, and discrimination; and (3) Gaps between protocols, policies, and procedures for health teams. CONCLUSIONS: Findings demonstrate how the rhetoric of 'choice' in regard to preferred place of death is ethically problematic because experienced inequities are produced and constrained by socio-structural forces that reach beyond individuals' control. Ultimately, our findings contribute suggestions for policy, programs and practice to enhance inclusiveness in palliative care. Re-defining 'home' within palliative care, enhancing supports, education, and training for community care workers, integrating palliative approaches to care into the everyday work of non-health care providers, and acknowledging, valuing, and building upon existing relations of care can help to overcome existing barriers to delivering palliative care in various settings and increase the opportunity for all to spend their end of life in the places that they prefer.

"Once you open that door, it's a floodgate": Exploring work-related grief among community service workers providing care for structurally vulnerable populations at the end of life through participatory action research.

BACKGROUND: At the end of life, people experiencing structural vulnerability (e.g. homelessness, poverty, stigmatization) rely on community service workers to fill gaps in access to traditional palliative services. Although high levels of burnout are reported, little is known about these workers' experiences of grief. AIM: To explore community service workers' experiences of grief to identify ways of providing more tailored, meaningful, and equitable supports. DESIGN: A community-based participatory action research methodology, informed by equity perspectives, was employed. SETTING/PARTICIPANTS: In an urban center in western Canada, community service worker (primary) participants (n = 18) were engaged as members of an action team. A series of 18 action cycles took place, with secondary participants (n = 48) (e.g. palliative, social care, housing support, etc.) being recruited throughout the research process. Focus groups (n = 5) and evaluative interviews (n = 13) with participants were conducted. Structured observational field notes (n = 34) were collected during all team meetings and community interventions. Interpretive thematic analysis ensued through a collaborative and iterative process. RESULTS: During initial meetings, action team participants described experiences of compounding distress, grief, and multiple loss. Analysis showed workers are: (1) grieving as family, not just providers; (2) experiencing complex layers of compounded grief; and (3) are fearful to open the "floodgates" to grief. CONCLUSIONS: Findings contribute to our understanding on the inequitable distribution of grief across society. A collective and material response is needed, including witnessing, acknowledging and valuing the grief process; facilitating community wellness, collective grieving, and advocacy; and providing training and tools in a palliative approach to care.

"We are to be like machines fill the bed before it gets cold": Exploring the emotional geographies of healthcare providers caring for dying residents in long-term care facilities.

The end-of-life context is imbued with emotions, with death and dying transforming everyday places, like long-term care facilities, into entirely new emotional topographies that can evoke profound effects on those who live and work within these settings. Despite their significant role, healthcare providers' emotions and their interconnections with 'place' have received relatively little attention from researchers, including geographers of care and caregiving. This secondary thematic analysis attempts to address this notable gap by exploring the emotional geographies of healthcare providers caring for dying residents in four long-term care facilities in western Canada. By drawing upon interview and focus group data with administrators (n = 12) and direct care provider (n = 80) participants, findings reveal that experiences of caring for dying residents were often charged with negative emotions (e.g., distress, frustration, grief). These emotions were not only influenced by social and physical aspects of 'place', but the temporal process of caring for a dying resident, which included: (1) Identifying a resident as in need of a palliative approach to care; (2) Actively dying; and (3) Following a resident's death. Findings indicate that providers' emotions shifted in scale at each of these temporal phases, ranging from association with the facility as a whole to the micro-scale of the body. Broader structural forces that influence the physical and social place of long-term care facilities were also found to shape experiences of emotional labor among staff. With an increasing number of deaths occurring within long-term care facilities throughout the Global North, such findings contribute critical experiential knowledge that can inform policy and programs on ways to help combat staff burnout, facilitate worker satisfaction, and foster resilience among long-term care providers, ensuring they receive the necessary supports to continue fulfilling this valuable caring role.

"Everybody in this community is at risk of dying": An ethnographic exploration on the potential of integrating a palliative approach to care among workers in inner-city settings.

OBJECTIVE: At the end of life, the need for care increases. Yet, for structurally vulnerable populations (i.e., people experiencing homelessness and poverty, racism, criminalization of illicit drug use, stigma associated with mental health), access to care remains highly inaccessible. Emerging research suggests that enhancing access to palliative care for these populations requires moving care from traditional settings, such as the hospital, into community settings, like shelters and onto the street. Thus, inner-city workers (ICWs) (e.g., housing support and community outreach) have the potential to play pivotal roles in improving access to care by integrating a "palliative approach to care" in their work. METHOD: Drawing upon observational field notes and interview data collected for a larger critical ethnographic study, this secondary thematic analysis examines ICWs' (n = 31) experiences providing care for dying clients and garners their perspectives regarding the constraints and facilitators that exist in successfully integrating a palliative approach to care in their work. RESULTS: Findings reveal three themes: (1) Approaches, awareness, and training; (2) Workplace policies and filling in the gaps; and (3) Grief, bereavement, and access to supports. In brief, ICWs who draw upon harm reduction strategies strongly parallel palliative approaches to care, although more knowledge/training on palliative approaches was desired. In their continuous work with structurally vulnerable clients, ICWs have the opportunity to build trusting relationships, and over time, are able to identify those in need and assist in providing palliative support. However, despite death and dying is an everyday reality of ICWs, many described a lack of formal acknowledgement by employers and workplace support as limitations. SIGNIFICANCE OF RESULTS: Findings contribute promising practices for enhancing equitable access to palliative care for society's most vulnerable populations by prioritizing front-line workers' perspectives on how best to integrate a palliative approach to care where structurally vulnerable populations live and die.

Caregiving at the margins: An ethnographic exploration of family caregivers experiences providing care for structurally vulnerable populations at the end-of-life.

BACKGROUND: People experiencing structural vulnerability (e.g. homelessness, poverty, racism, criminalization of illicit drug use and mental health stigma) face significant barriers to accessing care at the end-of-life. 'Family' caregivers have the potential to play critical roles in providing care to these populations, yet little is known regarding 'who' caregivers are in this context and what their experiences may be. AIM: To describe family caregiving in the context of structural vulnerability, to understand who these caregivers are, and the unique challenges, burdens and barriers they face. DESIGN: Critical ethnography. SETTING/PARTICIPANTS: Twenty-five family caregivers participated. Observational fieldnotes and semi-structured interviews were conducted in home, shelter, transitional housing, clinic, hospital, palliative care unit, community-based service centre and outdoor settings. RESULTS: Family caregivers were found to be living within the constraints of structural vulnerability themselves, with almost half being street family or friends. The type of care provided varied greatly and included tasks associated with meeting the needs of basic survival (e.g. finding food and shelter). Thematic analysis revealed three core themes regarding experiences: Caregiving in the context of (1) poverty and substance use; (2) housing instability and (3) challenging relationships. CONCLUSION: Findings offer novel insight into the experiences of family caregiving in the context of structural vulnerability. Engaging with family caregivers emerged as a missing and necessary palliative care practice, confirming the need to re-evaluate palliative care models and acknowledge issues of trust to create culturally relevant approaches for successful interventions. More research examining how 'family' is defined in this context is needed.

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.

Awareness as a dimension of health care access: exploring the case of rural palliative care provision in Canada.

OBJECTIVES: In Canada, the rural elderly population is increasing in size, as is their need for palliative care services in these settings. This analysis aims to identify awareness-associated barriers to delivering rural palliative care services, along with suggestions for improving service delivery from the perspective of local health care providers. METHODS: A total of 40 semi-structured interviews with various formal and informal health care providers were conducted in four rural and/or remote Canadian communities with limited palliative care resources. Interview data were thematically coded using Penchansky and Thomas' five dimensions of access (i.e. availability, (geographic) accessibility, accommodation, acceptability and affordability). Saurman's recently added sixth dimension of access - awareness - was also identified while coding and subsequently became the primary focus of this analysis. RESULTS: Identified barriers to palliative care awareness and suggestions on how to enhance this awareness, and ultimately palliative care delivery, corresponded with three key themes arising from the data: limited palliative care knowledge/education, communication and coordination. Participants recognized the need for more palliative care education, open lines of communication and better coordination of palliative care initiatives and local resources in their communities. CONCLUSIONS: These findings suggest that identifying the barriers to palliative care awareness in rural communities may be foundational to addressing barriers to the other five dimensions of access. A thorough understanding of these three areas of awareness knowledge, communication and coordination, as well as the connections between them, may help enhance how rural palliative care is delivered in the future.

Hospitals, clinics, and palliative care units: Place-based experiences of formal healthcare settings by people experiencing structural vulnerability at the end-of-life.

The process of dying pronounces inequities, particularly for structurally vulnerable populations. Extending recent health geography research, we critically explore how the 'places' of formal healthcare settings shape experiences of, and access to, palliative care for the structurally vulnerable (e.g., homeless, substance users). Drawing on 30 months of ethnographic data, thematic findings reveal how symbolic, aesthetic, and physical elements of formal healthcare 'places' intersect with social relations of power to produce, reinforce, and amplify structural vulnerability and thus, inequities in access to care. Such knowledge may inform decision-makers on ways to enhance equitable access to palliative care for some of societies' most vulnerable population groups.

Death Is a Social Justice Issue: Perspectives on Equity-Informed Palliative Care.

All too often, palliative care services are not responsive to the needs of those who are doubly vulnerable, being that they are both in need of palliative care services and experiencing deficits in the social determinants of health that result in complex, intersecting health and social concerns. In this article, we argue for a reorientation of palliative care to explicitly integrate the premises of health equity. We articulate the philosophical, theoretical, and empirical scaffolding required for equity-informed palliative care and draw on a current study to illustrate such an approach to the care of people who experience structural vulnerabilities.

Revisiting the use of 'place' as an analytic tool for elucidating geographic issues central to Canadian rural palliative care.

In 2010, Castleden and colleagues published a paper in this journal using the concept of 'place' as an analytic tool to understand the nature of palliative care provision in a rural region in British Columbia, Canada. This publication was based upon pilot data collected for a larger research project that has since been completed. With the addition of 40 semi-structured interviews with users and providers of palliative care in four other rural communities located across Canada, we revisit Castleden and colleagues' (2010) original framework. Applying the concept of place to the full dataset confirmed the previously published findings, but also revealed two new place-based dimensions related to experiences of rural palliative care in Canada: (1) borders and boundaries; and (2) 'making' place for palliative care progress. These new findings offer a refined understanding of the complex interconnections between various dimensions of place and palliative care in rural Canada.

Palliating inside the lines: The effects of borders and boundaries on palliative care in rural Canada.

We draw lines to divide our world into specific places, territories, and categories. Although borders and boundaries are dynamic and socially constructed, their existence creates many broad impacts on our lives by geographically distinguishing between groups (e.g., us/them; here/there; inside/outside) at various scales from the national down to the personal spaces of the individual. Particularly, borders and boundaries can be used to define a variety of differing spaces such as the familial, social, economic, political, as well as issues of access - including access to health services. Despite the implicit connection between borders, boundaries, and health, little research has investigated this connection from a health geography perspective. As such, this secondary thematic analysis contributes to addressing this notable gap by examining how borders and boundaries are experienced and perceived to impact access to palliative care in rural Canada from the perspectives of the formal and informal providers of such care. Drawing upon data from qualitative interviews (n = 40) with formal and informal palliative caregivers residing in four different rural Canadian communities, five forms of borders and boundaries were found to directly impact care delivery/receipt: political; jurisdictional; geographical; professional; and cultural. Implicitly and explicitly, participants discussed these borders and boundaries while sharing their experiences of providing palliative care in rural Canada. We conclude by discussing the implications of our findings for palliative care in rural Canada, while also emphasizing the need for more health geography, and related social science, researchers to recognize the significance of borders and boundaries in relation to health and healthcare delivery. Lastly, we emphasize the transferability of these findings to other health sectors, geographical settings, and disciplines.

Identifying socio-environmental factors that facilitate resilience among Canadian palliative family caregivers: a qualitative case study.

OBJECTIVE: In Canada, friends and family members are becoming increasingly responsible for providing palliative care in the home. This is resulting in some caregivers experiencing high levels of stress and burden that may ultimately surpass their ability to cope. Recent palliative care research has demonstrated the potential for caregiver resilience within such contexts. This research, however, is primarily focused on exploring individual-level factors that contribute to resilience, minimizing the inherent complexity of this concept, and how it is simultaneously influenced by one's social context. Therefore, our study aims to identify socio-environmental factors that contribute to palliative family caregiver resilience in the Canadian homecare context. METHODS: Drawing on ethnographic fieldnotes and semistructured interviews with family caregivers, care recipients, and homecare nurses, this secondary analysis employs an intersectionality lens and qualitative case study approach to identify socio-environmental factors that facilitate family caregivers' capacity for resilience. Following a case study methodology, two cases are purposely selected for analysis. RESULTS: Findings demonstrate that family caregiver resilience is influenced not only by individual-level factors but also by the social environment, which sets the lived context from which caregiving roles are experienced. Thematic findings of the two case studies revealed six socio-environmental factors that play a role in shaping resilience: access to social networks, education/knowledge/awareness, employment status, housing status, geographic location, and life-course stage. SIGNIFICANCE OF RESULTS: Findings contribute to existing research on caregiver resilience by empirically demonstrating the role of socio-environmental factors in caregiving experiences. Furthermore, utilizing an intersectional approach, these findings build on existing notions that resilience is a multidimensional and complex process influenced by numerous related variables that intersect to create either positive or negative experiences. The implications of the results for optimizing best homecare nursing practice are discussed.

An intersectionality-based policy analysis framework: critical reflections on a methodology for advancing equity.

INTRODUCTION: In the field of health, numerous frameworks have emerged that advance understandings of the differential impacts of health policies to produce inclusive and socially just health outcomes. In this paper, we present the development of an important contribution to these efforts - an Intersectionality-Based Policy Analysis (IBPA) Framework. METHODS: Developed over the course of two years in consultation with key stakeholders and drawing on best and promising practices of other equity-informed approaches, this participatory and iterative IBPA Framework provides guidance and direction for researchers, civil society, public health professionals and policy actors seeking to address the challenges of health inequities across diverse populations. Importantly, we present the application of the IBPA Framework in seven priority health-related policy case studies. RESULTS: The analysis of each case study is focused on explaining how IBPA: 1) provides an innovative structure for critical policy analysis; 2) captures the different dimensions of policy contexts including history, politics, everyday lived experiences, diverse knowledges and intersecting social locations; and 3) generates transformative insights, knowledge, policy solutions and actions that cannot be gleaned from other equity-focused policy frameworks. CONCLUSION: The aim of this paper is to inspire a range of policy actors to recognize the potential of IBPA to foreground the complex contexts of health and social problems, and ultimately to transform how policy analysis is undertaken.

Examining the language-place-healthcare intersection in the context of Canadian homecare nursing.

Currently, much of the western world is experiencing a shift in the places where care is provided, namely from institutional settings like hospitals to diverse community settings such as the home. However, little is known about how language and the physical and social aspects of place interact to influence how health-care is delivered and experienced in the home environment. Drawing on ethnographic participant observations of homecare nursing visits and semi-structured interviews with Canadian family caregivers, care recipients and nurses, the intersection of language, place and health-care was explored in this secondary analysis. Our findings reveal four themes: homecare nurses view themselves as 'guests'; home environments facilitate the development of nurse-client relationships; nurses adapt healthcare language to each home environment; and storytelling and illness narratives largely prevail during medical interactions in the home. These findings demonstrate the spatiality of language and how the home environment informs decisions regarding language use. Furthermore, these findings exemplify how language and place mutually influence the experiences and delivery of home health-care. We conclude by discussing the importance of considering the language-place-healthcare intersection in order to gain a better understanding of medical exchanges in places and the associated implications for optimizing best nursing practice.

Critically examining diversity in end-of-life family caregiving: implications for equitable caregiver support and Canada's Compassionate Care Benefit.

INTRODUCTION: Family (i.e., unpaid) caregiving has long been thought of as a 'woman's issue', which ultimately results not only in gendered, but also financial and health inequities. Because of this, gender-based analyses have been prioritized in caregiving research. However, trends in current feminist scholarship demonstrate that gender intersects with other axes of difference, such as culture, socio-economic status, and geography to create diverse experiences. In this analysis we examine how formal front-line palliative care providers understand the role of such diversities in shaping Canadian family caregivers' experiences of end-of-life care. In doing so we consider the implications of these findings for a social benefit program aimed at supporting family caregivers, namely the Compassionate Care Benefit (CCB). METHODS: This analysis contributes to a utilization-focused evaluation of Canada's CCB, a social program that provides job security and limited income assistance to Canadian family caregivers who take a temporary leave from employment to provide care for a dying family member at end-of-life. Fifty semi-structured phone interviews with front-line palliative care providers from across Canada were conducted and thematic diversity analysis of the transcripts ensued. RESULTS: Findings reveal that experiences of caregiving are not homogenous and access to services and supports are not universal across Canada. Five axes of difference were commonly raised by front-line palliative care providers when discussing important differences in family caregivers' experiences: culture, gender, geography, lifecourse stage, and material resources. Our findings reveal inequities with regard to accessing needed caregiver services and resources, including the CCB, based on these axes of difference. CONCLUSIONS: We contend that without considering diversity, patterns in vulnerability and inequity are overlooked, and thus continually reinforced in health policy. Based on our findings, we demonstrate that re-framing categorizations of caregivers can expose specific vulnerabilities and inequities while identifying implications for the CCB program as it is currently administered. From a policy perspective, this analysis demonstrates why diversity needs to be acknowledged in policy circles, including in relation to the CCB, and seeks to counteract single dimensional approaches for understanding caregiver needs at end-of-life. Such findings illustrate how diversity analysis can dramatically enhance evaluative health policy research.

Canada's Compassionate Care Benefit: is it an adequate public health response to addressing the issue of caregiver burden in end-of-life care?

BACKGROUND: An increasingly significant public health issue in Canada, and elsewhere throughout the developed world, pertains to the provision of adequate palliative/end-of-life (P/EOL) care. Informal caregivers who take on the responsibility of providing P/EOL care often experience negative physical, mental, emotional, social and economic consequences. In this article, we specifically examine how Canada's Compassionate Care Benefit (CCB)--a contributory benefits social program aimed at informal P/EOL caregivers--operates as a public health response in sustaining informal caregivers providing P/EOL care, and whether or not it adequately addresses known aspects of caregiver burden that are addressed within the population health promotion (PHP) model. METHODS: As part of a national evaluation of Canada's Compassionate Care Benefit, 57 telephone interviews were conducted with Canadian informal P/EOL caregivers in 5 different provinces, pertaining to the strengths and weaknesses of the CCB and the general caregiving experience. Interview data was coded with Nvivo software and emerging themes were identified by the research team, with such findings published elsewhere. The purpose of the present analysis was identified after comparing the findings to the literature specific to caregiver burden and public health, after which data was analyzed using the PHP model as a guiding framework. RESULTS: Informal caregivers spoke to several of the determinants of health outlined in the PHP model that are implicated in their burden experience: gender, income and social status, working conditions, health and social services, social support network, and personal health practises and coping strategies. They recognized the need for improving the CCB to better address these determinants. CONCLUSIONS: This study, from the perspective of family caregivers, demonstrates that the CCB is not living up to its full potential in sustaining informal P/EOL caregivers. Effort is required to transform the CCB so that it may fulfill the potential it holds for serving as one public health response to caregiver burden that forms part of a healthy public policy that addresses the determinants of this burden.

Perspectives from the frontlines: palliative care providers' expectations of Canada's compassionate care benefit programme.

Recognising their valuable role as key informants, this study examines the perspectives of front-line palliative care providers (FLPCP) regarding a social benefit programme in Canada designed to support family caregivers at end-of-life, namely the Compassionate Care Benefit (CCB). The CCB's purpose is to provide income assistance and job security to family caregivers who take temporary leave from employment to care for a dying family member. Contributing to an evaluative study that aims to provide policy-relevant recommendations about the CCB, this analysis draws on semi-structured interviews undertaken in 2007/2008 with FLPCPs (n = 50) from across Canada. Although participants were not explicitly asked during interviews about their expectations of the CCB, thematic content analysis revealed 'expectations' as a key finding. Through participants' discussions of their knowledge of and familiarity with the CCB, specific expectations were identified and grouped into four categories: (1) temporal; (2) financial; (3) informational; and (4) administrative. Findings demonstrate that participants expect the CCB to provide: (1) an adequate length of leave time from work, which is reflective of the uncertain nature of caregiving at end-of-life; (2) adequate financial support; (3) information on the programme to be disseminated to FLPCPs so that they may share it with others; and (4) a simple, clear, and quick application process. FLPCPs hold unique expertise, and ultimately the power to shape uptake of the CCB. As such, their expectations of the CCB contribute valuable knowledge from which relevant policy recommendations can be made to better meet the needs of family caregivers and FLPCPs alike.

Spatially informed knowledge translation: informing potential users of Canada's Compassionate Care Benefit.

Implemented in 2004 by the Canadian government, the Compassionate Care Benefit (CCB) program aims to provide income assistance and job security to caregivers who decide to take temporary leave from their employment to care for a terminally ill family member at risk of dying. Reports have cited numerous challenges with respect to the benefit's successful uptake, including the major obstacle of a general lack of awareness regarding the program's existence. Based on this knowledge, the present analysis aims to consider local contexts and potential barriers through engagement with the knowledge-to-action (KTA) cycle. Using an innovative and spatially informed three-step mixed-method analysis, we identify: (1) who likely CCB-eligible family caregivers are; (2) where these individuals' households are located; and (3) how best to get information about the CCB to them. Melding the findings from the three analytic steps generates a tailored path from which an information dissemination strategy can be guided (the intended action). Results indicate that targeted dissemination efforts undertaken outside of urban cores are likely to be most efficient in reaching potential or current CCB-eligible family caregivers. This strategy should be implemented through multiple formats and venues via two information pathways: (1) from key professionals to family caregivers and (2) from the community to the general public. Through employing a spatial perspective, these findings engage and usefully contribute to the KTA cycle process. Future involvement in the cycle will entail translating these findings for use in a decision-making context in order to implement an intervention. This approach can also be applied to other health and social programs where lack of awareness exists or for targeted interventions that require identifying specific populations.