EMBED – Experiences of MultimorBidity at the EnD of life
Research type
Research Study
Full title
An exploration of the experiences of healthcare and support in the last year of life for people with multiple long-term conditions and those close to them: through the lens of bereaved caregivers
IRAS ID
334826
Contact name
Sarah P Bowers
Contact email
Sponsor organisation
University of St Andrews
Duration of Study in the UK
3 years, 0 months, 22 days
Research summary
The number of people dying with multiple long-term conditions (multimorbidity, the co-existence of ≥2 long-term conditions), is predicted to rise. People with multiple long-term conditions describe high levels of uncertainty around their care and are known to have a high level of need as they approach the end of life. Care for people with multiple long-term conditions, particularly those without cancer, has been shown to be poorly coordinated which further feeds into the uncertainty people then experience.
We need to better understand what care at the end of life is like for people with multiple long-term health conditions. We will interview bereaved caregivers of people who died in Fife with two or more long-term health conditions to learn what healthcare and support was provided at the end of life, what influenced their decision-making about using services and the impact this had on end-of-life experience for people with multiple long-term health conditions. Interviews will enquire about the caregiver's one experiences and their knowledge of the experience of their loved one. Potential participants will be approached via social media, however if required we may also ask some NHS staff to identify people who may be interested in participating.
Understanding the benefits and challenges of accessing and using healthcare in the last year of life will ultimately allow more tailored design of healthcare services for this population in the future. This study will also have benefits in identifying where future research should be focused.
This research has benefitted from the input of our Public Advisory Group in its design, and will continue to benefit from their future input for analysing and sharing our findings more widely.
REC name
North of Scotland Research Ethics Committee 2
REC reference
23/NS/0142
Date of REC Opinion
19 Dec 2023
REC opinion
Favourable Opinion