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.