This research brings together evidence from a systematic review, an ethnographic field study, and a machine learning analysis to triangulate the effects of self-care towards the end of life. This project will explore the role that socioeconomic inequalities can have on health inequalities at the end of life including access to palliative care, quality of life and out-of-pock cost.
Background
Self-care is increasingly part of how we live and die with disease, with greater capabilities for digital health and the recent COVID-19 pandemic encouraging the in-home management and remote monitoring of disease. Although much is known about self-care in the early to moderate stages of chronic disease, it is unclear how self-care operates towards, and at the end of life.
Project Aims
With regard to self care for adults in the community in the last years of life, the following questions will be asked:
- What techniques are used to practice self care?
- What criteria do patients, family members, and practitioners use to evaluate best practices of self care?
- What forms and configurations (inequalities) of social, economic, and intellectual capital enable or hinder self care?
- How does the practice of self care relate to the nature and timing of service use towards the end of life?
- How does self care affect quality of life and cost towards the end of life?
Project Activity
This project has completed the systematic review (pending publication) and completed the ethnographic fieldwork. The project team are currently working on the machine learning analysis looking at health inequalities of care use at the end of life. They have secured statistical support from the Department of Public Health and Primary Care to assist with this analysis.
Anticipated Impact
Summaries of the qualitative work has already been sent to participating research sites with a view on how to improve their support for safe self-care for patient populations approaching death. The project team aims to publish three consecutive papers pertinent to the topic of self-care (one of which is under review). These papers shall form discrete review, qualitative, and quantitative publications.
Who is involved?
- Corresponding: Joshua Gallagher, University of Cambridge
- Principle Investigator: Professor Stephen Barclay (Theme Lead for Palliative and End-of-Life Care, ARC East of England), University of Cambridge
- Professor Mike Kelly, University of Cambridge
- Dr Robbie Duschinsky, University of Cambridge.
Papers/resources associated with this project
"Self-care towards the end of life: A systematic review and narrative synthesis on access, quality and cost" - SAGE Palliative Medicine (pending review).
Contact
Joshua Gallagher, jjmg4@cam.ac.uk
