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Topic

Seeing, Engaging, and Supporting Caregiving at the End of Life in Contexts of Homelessness

Social Dimensions of Health

Date & location

• Wednesday, March 25, 2026
• 9:30 A.M.
• Virtual Defence

Examining Committee

Supervisory Committee

• Dr. Kelli Stajduhar, School of Nursing, ̽��ϵ�� (Supervisor)
• Dr. Marilou Gagnon, School of Nursing, UVic (Co-Supervisor)
• Dr. Ryan McNeil, School of Medicine, Yale University (Outside Member)

External Examiner

• Dr. Mary Ellen Macdonald, Department of Medicine, Dalhousie University

Chair of Oral Examination

• Dr. Amanda Bates, Department of Biology, UVic

Abstract

Caregiving is a potentially universal experience as many of us have offered and received care or will in the future. Yet, these experiences are made different by the social, political, economic, legal, and health systems in which caregiving takes place, shaped by systems of privilege and oppression like classism, structural racism, colonialism, sexism, cisgenderism, heterosexism, ableism, and ageism. Palliative care research is increasingly focused on considering inequities, in particular, inequities that are embedded in palliative care systems, policies, frameworks, services, and practices. Homelessness is a site to examine these inequities whereby not having a stable place to live is associated with higher rates of acute and chronic health conditions, increased mortality rates, and a life expectancy of nearly half that of the housed population. As people facing homelessness approach the end of life, accessing palliative and end-of-life care becomes even more difficult due to structural and social barriers. Assumptions embedded within palliative care systems that people have safe homes, financial and social support – including biologically- or legally-related (i.e., bio-legal) family caregivers who are willing and able to provide unpaid care – continues to produce inequities in access to and quality of care at the end of life. 

In Canada, most palliative and end-of-life care is provided by family caregivers whose unpaid care is increasingly relied upon due to population aging and pressures on the formal healthcare system. Decades of research has revealed the experiences and burdens faced by family caregivers in palliative care highlighting the significant social, mental, emotional, physical, and financial strain. Yet, there is very little research about who provides care for people facing homelessness at the end of life especially when the family networks expected to be there (i.e., nuclear, bio-legal) are limited, absent, or strained. This dissertation addresses a gap in the empirical evidence describing caregiving among people who are facing homelessness at the end of life, their experiences and barriers faced, and the broader implications for policy, practice and programming, and research. 

This dissertation focuses on system gaps caused not by deficits in people, but on the assumptions embedded in our systems about who or who should provide care at the end of life and beliefs about how that care happens or should happen. In Chapter 1, I focus on the background of the problem, research purpose and objectives, and in Chapter 2, I offer a discussion of my positionality, theoretical perspectives, and methodological approach. In Chapter 3, I apply these perspectives to the research itself, outlining my research process from developing the research questions to evaluating the work. In Chapter 4, I explore dominant, Western conceptualizations of family (i.e., nuclear, bio-legal) and then family formation among people who are unrelated, biologically or legally, to one another in the concept of ‘fictive kinship’. In Chapter 5, I draw on primary research including 300 hours of participant observation and 44 interviews over a 27-month period (Aug 2022 – Nov 2024) with Equity-Oriented Palliative Care (EOPC) team members, clients of these teams, their caregivers, and other service providers to offer an analysis of the key challenges faced by caregivers who are bio-legally unrelated in contexts of homelessness. In Chapter 6, I illuminate a less recognized but important role of EOPC teams’ work in supporting caregiving and caregivers of people living with life-limiting conditions in contexts of homelessness. In my final chapter, Chapter 7, I summarize findings from this dissertation and then focus on three thematic areas to offer implications for policy, programming and practice, and research.