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\u27s 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 developedworld, 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 economicconsequences. In this article, we specifically examine how Canada’s Compassionate Care Benefit (CCB) - acontributory benefits social program aimed at informal P/EOL caregivers - operates as a public health response insustaining informal caregivers providing P/EOL care, and whether or not it adequately addresses known aspects ofcaregiver 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 wereconducted with Canadian informal P/EOL caregivers in 5 different provinces, pertaining to the strengths andweaknesses of the CCB and the general caregiving experience. Interview data was coded with Nvivo software andemerging themes were identified by the research team, with such findings published elsewhere. The purpose ofthe present analysis was identified after comparing the findings to the literature specific to caregiver burden andpublic 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 areimplicated in their burden experience: gender, income and social status, working conditions, health and socialservices, social support network, and personal health practises and coping strategies. They recognized the need forimproving the CCB to better address these determinants.Conclusions: This study, from the perspective of family caregivers, demonstrates that the CCB is not living up toits full potential in sustaining informal P/EOL caregivers. Effort is required to transform the CCB so that it may fulfillthe potential it holds for serving as one public health response to caregiver burden that forms part of a healthypublic policy that addresses the determinants of this burden

“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

Abstract 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

Placing the intersection: A qualitative exploration of formal and informal palliative caregiving in the home

Currently over 259,000 Canadians die each year, yet only 15 percent access palliative care services prior to death. This reality raises significant concerns regarding the awareness, accessibility, and meaningfulness of these services for dying Canadians and their families. It also signals a need to examine lived experiences of palliative caregiving in order to gain a better understanding of what needs exist and what barriers may be influencing Canadians’ access to this important care. As equity of access to health care is a main interest of health geographers, I address this need by seeking the experiential perspectives of those who work on the front-lines of providing palliative care in Canada, with a specific focus on the province of British Columbia. Using semi-structured interviews and ethnographic fieldnotes from three research studies, I undertake four diversity- or intersectional-based analyses that employ a relational concept of ‘place’ to explore experiences of palliative caregiving in the homecare context. Findings from the analyses reveal that differences exist among palliative family caregivers and, importantly, that these differences intersect to impact caregivers’ needs and patients’ access to palliative care services and supports. By employing a relational concept of place, the findings show how Canadian palliative caregivers’ opportunities, choices, decisions, and outcomes are shaped by where and how they are situated. As such, this dissertation disrupts the common notion in policy and practice that Canadian palliative caregivers are a homogeneous group with similar needs and thus require similar supports. Furthermore, the analytic findings offer specific implications for and research contributions to the geographies of care and caregiving, palliative caregiving policy, and homecare nursing practice. Considering Canada’s rapidly aging population and impending increased need for palliative care in the coming years, this dissertation contributes knowledge that can help to inform decision-makers and health care administrators of ways to enhance services, improve access, and ultimately, better meet the needs of all dying Canadians and their family caregivers

Evaluating Canada\u27s compassionate care benefit: a geographic perspective

Equity of access to health services is a main interest of health geographers. Recently, consideration has extended to policy-relevant analyses that forward spatial implications. In 2004, the Compassionate Care Benefit (CCB) was implemented to provide income assistance and job security to insured Canadians who take temporary leave from employment to care for a dying person. However, since it was introduced, uptake of the CCB has been significantly low. The development and implementation of a ‘spatially informed’ knowledge translation strategy can result in the identification of more efficient information-sharing pathways in order to increase needed awareness about the CCB, while examining how Canadians experience and understand the program across various geographic ‘scales’ assists with illuminating challenges and inequities to access. Such geographic perspectives contribute valuable knowledge to program evaluation, which, ultimately can better inform decision-makers on how to more effectively meet the needs of program users and other stakeholders

Jumping into the unkown: the stress of female newcomers\u27 adjustment to life in Toronto and their implications for delivering primary mental health care

Following migration to Canada, female newcomers must endure a process of resettlement that often is accompanied by considerable stress, creating vulnerability towards related disorders and mental ill-health. Due to socio-cultural and linguistic barriers, women are more likely than men to experience feelings of isolation and distress during this resettlement process. Therefore, it is important to ensure that mental health care is accessible for them. This study examines sources of mental stress and distress female newcomers experience in adjusting to a new place, Toronto, and to a new health care system. Importantly, this adjustment is framed as a process that occurs over time and place. As part of a larger community-based participatory action research study, this analysis draws upon 30 semi-structured interviews conducted with female newcomers from 4 cultural-linguistic groups. Thematic findings indicate major sources of stress in adjusting to life in Toronto include: navigation, concerns regarding personal safety, adapting to a new lifestyle, and finding and maintaining employment. In adjusting to Canada\u27s health care system, sources of stress include: learning how to access care; not having access to specialists; and adapting to a new culture of care. Conclusions consider implications of these findings for delivering primary mental health care

Session 5: Concern for Animal Care and Safekeeping as a Barrier to Leaving Abusive Relationships: Experiences of Intimate Partner Violence and Animal Welfare Service Providers

There is a clear link between intimate partner violence (IPV) and animal abuse, with such forms of violence often co-occurring (see Monslave, Ferreira, & Garcia, 2017 for a review). There is also mounting evidence that concern for animal care and safekeeping impacts the decision of whether to leave IPV relationships and seek shelter support (e.g., Ascione et al., 2007; Barrett, Fitzgerald, Stevenson, & Cheung, 2017). Barriers to animal care and safekeeping when seeking refuge may be especially pronounced in rural and northern areas, but few studies have examined this context to date (Wuerch, Giesbrecht, Price, Knutson, & Wach, 2017). The present study addresses this gap by examining the experiences of animal welfare and IPV service providers living in urban, rural, and northern communities in Saskatchewan, Canada. Two online surveys were distributed among animal welfare and IPV service providers across the province. Survey questions aimed to examine (a) whether concerns for the care and safety of companion animals and livestock are barriers to leaving IPV situations in Saskatchewan; and (b) existing supports and services in Saskatchewan that provide animal safekeeping services for individuals leaving IPV situations. A total of 32 animal welfare representatives and 51 IPV service representatives completed the online surveys (N = 83). Following completion of the online surveys, 12 participants were contacted to participate in semi-structured telephone interviews. Our results support previous research suggesting that concern for animal care and safekeeping impacts IPV survivors’ decisions to remain with or return to an abusive partner, as well as whether to seek shelter support (e.g., Ascione et al., 2007; Barrett et al., 2017; Hartman et al., 2018; Wuerch et al., 2017). Most IPV service providers (95.92%) reported that the safety and safekeeping of animals impacts individuals’ ability, planning, and decision to leave abusive partners, with many (77.55%) being personally aware of situations where this was the case. Many IPV service providers reported asking survivors seeking refuge about safety of animals during the intake process (65.31%) and helping to find temporary safekeeping for animals (56.25%) if needed; however, most animal welfare providers reported that, at present, there was not adequate access to animal safekeeping supports in their area (73.08%). Various challenges to helping find temporary safekeeping for animals were reported: IPV shelters not allowing animals, difficulty housing livestock, concern regarding anonymity of animal foster homes, animals not being up-to-date with vaccinations, certain programming only being available in urban areas, lack of transportation for animals from rural areas, and financial barriers. Suggestions for improving their ability to support individuals with animal safekeeping included: interagency collaboration, implementing a structured referral process for animal care and safekeeping, creating emergency funding for animal care and safekeeping, ensuring anonymity of animal foster homes, including a space for animals in IPV shelters, and creating facilities to house livestock. Our results have important implications for improving policies and practices related to IPV and animal care. Further research is warranted to inform and improve the development and implementation of national support services and resources

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.Gender, Race, Sexuality and Social Justice, Institute forSocial Work, School ofOther UBCNon UBCArts, Faculty ofReviewedFacult