The Self Care Study (V1.1)
Research type
Research Study
Full title
Self Care in the Last Years of Life Study
IRAS ID
301058
Contact name
Joshua Gallagher
Contact email
Sponsor organisation
University of Cambridge
Clinicaltrials.gov Identifier
RH21518, NIHR ARC PhD Studentship
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Self care is the practice of patients to manage and monitor their own disease symptoms. It has widely been recommended by organisations such as the NHS and the World Health Organisation as a way to maintain independence whilst living with severe disease and even towards the end of life.
Despite these recommendations, no research study has looked at how self care is practiced towards the end of life, where the task of self care becomes increasingly difficult, and how self care affects people’s use of informal or professional-led care (such as hospice care).
We will use a case study approach where we invite between 8 to 10 patients to tell us about their practices of self care and overall care use over time through research interviews. We will also look into the views of these patients, and any informal care givers and healthcare professionals about self care towards the end of life.
We will interview patients identified as self caring by their healthcare provider between 1 and 3 times over the course of 2 to 4 months. We will interview informal care giver and one professional (GP, specialist nurse or community nurse) involved in each patient’s care, one time, normally after the last patient interviews.
Interviews will use questions decided beforehand that are flexible and will be recorded. All information collected will have names and places removed to make it impossible to identify who took part. The analysis will look for patterns and differences in methods and resources used by participants to self care. Findings will be shared with local service providers and the public to help improve future end-of-life care practice.
This study is part of Joshua Gallagher’s PhD thesis and is funded by his award of a National Institute for Health Research Applied Research Collaboration PhD Studentship.
REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
21/NE/0207
Date of REC Opinion
13 Jan 2022
REC opinion
Further Information Favourable Opinion