Caring for People on the Margins: An Institutional Ethnographic Exploration of Community Palliative Care Work for People who are Precariously Housed
Date
2023-09-15
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Abstract
People experiencing homelessness have more barriers accessing healthcare than the general population. Challenges are worsened when people become ill and require end-of-life care (EOLC). Some barriers to EOLC for this population include discrimination, service providers who lack knowledge about homelessness, and fewer opportunities to voice care preferences. As part of a developing palliative equity movement, small teams have been created to provide better EOLC for people experiencing homelessness. While much research explores homelessness and healthcare, to date, none investigates the social organization of these teams amidst the mainstream system. This research addresses this gap by exploring how one of these small teams, the Community Allied Mobile Palliative Partnership (CAMPP), interacts with clients, structures their work, hooks into the mainstream healthcare system, and is institutionally accountable to a broader philanthropic funding structure in Calgary, Canada. This project uses institutional ethnography (IE) as its guiding mode of inquiry. From the standpoint of CAMPP clients, IE promotes understanding of how this team’s work is put together, produced, legitimized, and challenged while operating in the interstices of the mainstream healthcare system. With over 100 hours of observations, document reviews, and 21 client and service provider interviews, this research recasts the reader’s view from taken for granted medical models of palliative care toward the social realities of people at society’s margins and how the CAMPP team embeds these needs into their care model. Grounded in client accounts, this project illustrates how the mainstream system is structured to create challenges for people facing economic marginalization warranting a service like the CAMPP team. Paying close attention to language, this study shows how CAMPP is shaped by and reshapes the palliative care discourse to include social factors, mobilizing the widely recognized model of “harm reduction”. Lastly, this project describes how the CAMPP team is funded and their perceptions of the sustainability of their program. This study has implications for policymakers, community programs, researchers, and people experiencing homelessness by making visible how teams like CAMPP provide care “at the margins” of dissolution while caring for people “at the margins” of society.
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institutional ethnography, palliative care, homelessness, houselessness, end-of-life care
Citation
Petruik, C. R. (2023). Caring for people on the margins: an institutional ethnographic exploration of community palliative care work for people who are precariously housed (Doctoral thesis, University of Calgary, Calgary, Canada). Retrieved from https://prism.ucalgary.ca.