Mollison Ashley, Stajduhar Kelli I, Gagnon Marilou, McNeil Ryan
Institute on Aging and Lifelong Health, University of Victoria, BC, Canada.
School of Nursing, University of Victoria, BC, Canada.
Palliat Care Soc Pract. 2025 May 13;19:26323524251336765. doi: 10.1177/26323524251336765. eCollection 2025.
Identifying and addressing inequities in palliative care is an area of growing interest and importance. In this critical essay, we aim to challenge embedded assumptions about 'family' caregiving in white, Western systems (e.g. that of the nuclear family as carers) and focus on how the social determinants of health (SDOH; e.g. income and social protection, housing, education, food security) affect access to, and quality of, care at the end of life. More specifically, our analysis pays attention to what shapes the SDOH themselves including how racism, classism, heterosexism, and ableism become embedded and sustained in health and social institutions including palliative care. We begin by providing a brief discussion of the study of 'family' including the nuclear family standard and fictive kinship as an 'alternative' family form. Next, we focus on fictive kinship in two diverse populations - (1) street-involved youth who form street families; and (2) older adults who access care beyond nuclear families - that challenge embedded assumptions and help set a foundation for thinking about family and caregiving in contexts of inequities. Drawing on short vignettes, we then focus on emerging issues in palliative care and 'family' caregiving in contexts of homelessness and housing vulnerability. These issues include how caregivers in contexts of homelessness are, themselves, facing structural vulnerability; bio-legal family estrangement, reunification, and privileging; and how community service workers are filling both formal and informal caregiving roles. We conclude by delineating ongoing questions, research and practice gaps, and suggestions for future research in this area.
识别和解决姑息治疗中的不平等问题是一个日益受到关注且至关重要的领域。在这篇批判性文章中，我们旨在挑战西方白人体系中关于“家庭”护理的固有假设（例如核心家庭作为护理者的假设），并关注健康的社会决定因素（如收入和社会保护、住房、教育、粮食安全）如何影响临终护理的可及性和质量。更具体地说，我们的分析关注塑造健康社会决定因素本身的因素，包括种族主义、阶级主义、异性恋至上主义和能力主义如何在包括姑息治疗在内的健康和社会机构中得以根深蒂固并持续存在。我们首先简要讨论“家庭”研究，包括核心家庭标准以及拟亲属关系作为一种“替代”家庭形式。接下来，我们关注两个不同人群中的拟亲属关系——（1）形成街头家庭的街头涉入青年；（2）获得核心家庭以外护理的老年人——这些人群挑战了固有假设，并有助于为思考不平等背景下的家庭和护理奠定基础。借助简短的事例，我们随后关注无家可归和住房脆弱背景下姑息治疗及“家庭”护理中的新出现问题。这些问题包括无家可归背景下的护理者自身如何面临结构性脆弱性；生物法律层面的家庭疏远、团聚和特权问题；以及社区服务工作者如何同时承担正式和非正式护理角色。我们通过阐述该领域当前存在的问题、研究与实践差距以及对未来研究的建议来得出结论。
