Dying in the margins: Experiences of dying at home for people living with financial hardship and deprivation

Richards, N. , Quinn, S., Carduff, E. and Gott, M. (2024) Dying in the margins: Experiences of dying at home for people living with financial hardship and deprivation. SSM - Qualitative Research in Health, 5, 100414. (doi: 10.1016/j.ssmqr.2024.100414)

Abstract

Home dying is a policy indicator of ‘quality dying’ in many high-income countries, but there is evidence that people living in areas of higher deprivation have a reduced likelihood of dying at home. However, there is limited research which centres the views and experiences of people living with both socioeconomic deprivation and serious advanced illness. We deployed visual methods to address this gap in knowledge, focusing on barriers to, and experiences of, home dying for people experiencing poverty and deprivation in the UK. We used photovoice and professional documentary photography between April 2021 and March 2023 with eight participants with serious advanced illness, six of whom had died by the end of the study. We also worked with four bereaved family members to create digital stories. This produced a large volume of multi-modal data which we analysed using a thematic, iterative, interpretive approach. Key findings included the high costs of dying at home, the nature and impact of which were conveyed by images such as a heating thermostat set to low. Images also expressed how for some participants, the environment inside and outside the home was experienced as oppressive and alienating because of cramped, materially poor social housing, as well as urban noise, crime, mould and damp, and a lack of access to outside space. Nevertheless, the home environment was important to all participants, particularly as a site to support the continuation of their identity and autonomy, and some were explicit about wanting to remain at home for as long as possible. This study provides unique insights regarding the significant policy shift needed to improve the extent and experience of home dying for the growing number of people dying in the context of financial hardship and deprivation both in the UK, and elsewhere.

• Item Type: Articles
• Status: Published
• Refereed: Yes
• Glasgow Author(s) Enlighten ID: Quinn, Dr Samuel and Richards, Dr Naomi

Creator Roles

Richards, N.: Writing – review and editing, Writing – original draft, Supervision, Project administration, Methodology, Funding acquisition, Formal analysis, Data curation, Conceptualization
Quinn, S.: Writing – review and editing, Project administration, Investigation, Formal analysis, Data curation

• Authors: Richards, N., Quinn, S., Carduff, E., and Gott, M.
• College/School: College of Social Sciences > School of Social & Environmental Sustainability
• Journal Name: SSM - Qualitative Research in Health
• Publisher: Elsevier
• ISSN: 2667-3215
• ISSN (Online): 2667-3215
• Published Online: 11 March 2024
• Copyright Holders: Copyright © 2024 The Authors
• First Published: First published in SSM - Qualitative Research in Health 5:100414
• Publisher Policy: Reproduced under a Creative Commons license

Project Code	Award No	Project Name	Principal Investigator	Funder's Name	Funder Ref	Lead Dept
304429		Dying at the Margins: uncovering the reasons for unequal access to home dying for the socio-economically deprived	Naomi Richards	Economic and Social Research Council (ESRC)	ES/S014373/1	SSES - Interdisciplinary Studies