Self-care towards the end of life

Background Self-care is widely promoted as a means of managing chronic disease, reducing healthcare costs, and improving patient outcomes. However, its application towards the end of life, a period marked by increasing frailty, dependency, and shifting care priorities, remains underexplored. Policies advocating self-care emphasise patient empowerment through technology and remote monitoring, yet the assumption that self-care remains feasible, and beneficial, in the final stages of life requires investigation. While self-care has been linked to improved quality of life and reduced healthcare utilisation in earlier disease stages, its impact at the end of life is less clear. Understanding how self-care is experienced, its effects on patients, and the role of socioeconomic disparities in shaping self-care practices is critical to ensuring that it remains meaningful and equitable for patients and their families. Aims My thesis aims to examine self-care towards the end of life by addressing three research questions: (i) how is self-care experienced by patients, families, and healthcare professionals; (ii) what are the effects of self-care on patients; and (iii) how does socioeconomic status relate to self-care. Methods I used a multimethods approach, integrating systematic review, quantitative analysis, and qualitative research. My systematic review and narrative synthesis provides an overview of existing literature on self-care in home settings, identifying knowledge gaps. I then conducted a quantitative analysis of nationally representative survey datasets from England, USA, and Europe to investigate the financial implications of self-care, particularly out-of-pocket expenditures and the risk of catastrophic financial costs. My qualitative component consisted of a longitudinal interview study of ten patients, their families, and related healthcare professionals in two regions of England, using interviews, observations, and photographic data to explore their lived experiences of self-care. Findings My findings from the systematic review highlighted that self-care becomes increasingly burdensome towards the end of life and that its effects on care use, quality, and cost remain unclear. Results from my quantitative analyses demonstrated that wealthier individuals are more likely to self-fund their care, and those with higher education face a greater risk of catastrophic out-of-pocket expenditure. My qualitative research revealed that patients did not conceptualise their actions as self-care but instead framed them as "coping" or "getting on with it." Self-care was found to be a relational practice, shaped by family support, financial resources, personal experiences, and the material conditions of the home. While self-care allowed patients to maintain valued daily practices, it was also experienced as a necessity rather than a choice, with socioeconomic disparities influencing the ability to self-care independently. Conclusion Synthesising findings across the thesis, my research reconceptualises self-care as a distinct, socially situated practice shaped by material, social, and economic factors. It challenges the dominant policy narrative of self-care as an individual responsibility and highlights the extent to which self-care depends on available resources and support. By positioning self-care within a practice theory framework, this thesis reframes it as a practice that is collectively enabled, rather than expected of individuals alone. My findings call for future research and policy to acknowledge the broader conditions that make meaningful self-care possible and sustainable as life nears its end.

Name dc:type.qualificationname

Doctor of Philosophy (PhD)

Level dc:type.qualificationlevel

Doctoral

Grantor dc:publisher.institution

University of Cambridge

Year dc:date.issued

2025

Author dc:creator

• Gallagher, Joshua

Advisors dc:contributor.advisor

• Barclay, Stephen
• Kelly, Mike
• Duschinsky, Robbie

• death
• dying
• end-of-life care
• palliative care
• self-care
• self-management
• self-monitoring

Licence

• https://apollo8-f-pro.lib.cam.ac.uk/bitstreams/f54785a9-bbeb-4751-8a33-cf9d5807684c/download
• http://purl.org/NET/rdflicense/allrightsreserved

DOI dc:identifier.doi

https://doi.org/10.17863/CAM.119022

OAI identifier oai:identifier

oai:www.repository.cam.ac.uk:1810/385414