How does housing affect end-of-life care and bereavement in low-income communities? A qualitative study of the experiences of bereaved individuals and service providers in the United Kingdom

Abstract

Background: Access to affordable, appropriate housing is one of the key social determinants of health, affecting well-being across the lifecourse. However, beyond a recognition that housing quality is linked to place of death, little is known about the ways in which housing status impacts social, emotional, and practical aspects of dying and bereavement. Method: The Checking Out project is a qualitative study aiming to explore the ways in which socio-economic status impacts people’s experiences of, and attitudes towards, death, dying, and bereavement in the United Kingdom. Qualitative interviews were carried out with 14 bereaved individuals with experience of poverty at end of life or in bereavement, and 15 professionals supporting individuals in low-income communities. Interviews were conducted via phone/video call, and data include experiences of end of life and bereavement both before and during the pandemic. Transcripts were examined using thematic analysis. Results: Housing emerged as an important factor affecting people’s experiences, with 7 of the 14 bereaved individuals and all except 1 of the professionals discussing housing-related issues. Participants described ways in which unsuitable housing and housing insecurity impacted practical aspects of dying but also emotional and social well-being at end of life. Housing-related issues affected both patients and their families, though families found it difficult to air these concerns when their relative was dying. Conclusion: The paper demonstrates how trusted professionals are able to advocate or address the issues faced by bereaved individuals and suggests implications for policy and practice. A greater awareness of the potential impact of housing status across public services, including healthcare practitioners, welfare support, and housing providers, could better support patients and practitioners to address these issues proactively. Housing providers and policy-makers should be included as key partners in collaborative public health approaches to palliative care.

Reflecting on choices and responsibility in palliative care in the context of social disadvantage

“…An issue that has arisen from recent research in the United Kingdom concerns the ethical, professional, and practical challenges experienced by people providing palliative care in the context of socioeconomic disadvantage and how they should respond. [8][9][10][11] Finding a way to support healthcare professionals to acknowledge and unpack some of these challenges and tensions is urgently needed, particularly given the pervasive social inequalities in the United Kingdom, including at the end of life. 1,[11][12][13][14] Within and beyond the United Kingdom, this objective is relevant for colonised and ethnically marginalised peoples who are affected by racism and cultural marginalisation within the palliative care context.…”

“…There may also be challenges building trusting relationships with people who have a rational and reasonable mistrust of services because of prior experiences. 8 , 10 This requires professionals to be skilled and motivated to negotiate a way through complicated situations, where existing systems and structures may be more of a hindrance than a help.…”

“…Extracts from research studies. 8,10,15 immune from this effect. As articulated by Rowley et al 1 in their paper on poverty at the end-of-life, there is an expectation within palliative care that 'people will make choices which align with normative understandings of good ways to die' (p. 7).…”