Care of people at the end of their lives in the rural and coastal communities of the South West Peninsula of England
| ISRCTN | ISRCTN64949421 |
|---|---|
| DOI | https://doi.org/10.1186/ISRCTN64949421 |
| Integrated Research Application System (IRAS) | 355730 |
| National Institute for Health and Care Research (NIHR) | 167160 |
| Sponsor | University of Plymouth |
| Funder | National Institute for Health and Care Research |
- Submission date
- 31/03/2026
- Registration date
- 22/04/2026
- Last edited
- 22/04/2026
- Recruitment status
- Recruiting
- Overall study status
- Ongoing
- Condition category
- Other
Plain English summary of protocol
Background and study aims
People living in rural and coastal areas can find it harder to get the care they need at the end of their lives. This study aims to understand how end of life care is provided in Devon, Cornwall and Somerset and how it can be improved. The research team will look at what works well, what does not, and why. The study uses a realist evaluation approach and includes interviews, surveys, case studies, data analysis and workshops with people involved in end of life care.
Who can participate?
The study includes adults aged 18 years or over who live or work in rural or coastal parts of Devon, Cornwall or Somerset. Participants may be people who are in the last 12 months of life, family members who are caring for someone or who have been bereaved, or professionals working in health, social care or the voluntary sector. All participants must be able to give informed consent and communicate in English, with support if needed.
What does the study involve?
Participants may be invited to take part in interviews, focus groups or observations as part of case studies. Some people may be involved in surveys or workshops. The research team will also look at existing NHS data to better understand differences in care. The exact activities will depend on which part of the study participants are involved in.
What are the possible benefits and risks of participating?
Taking part may not give a direct benefit, but it offers an opportunity to share experiences and help improve end of life care for people living in rural and coastal communities. Some participants may find discussing end of life experiences upsetting. Support will be offered, and people can stop taking part at any time.
Where is the study run from?
The study is run from the University of Plymouth. Research activities take place across Devon, Cornwall and Somerset, including several hospices such as St Luke’s Hospice Plymouth, St Margaret’s Hospice Care, North Devon Hospice, Mount Edgcumbe Hospice, Rowcroft Hospice and Hospiscare.
When is the study starting and how long is it expected to run for?
The study began recruiting on 20 February 2026 and is expected to run until January 2028.
Who is funding the study?
National Institute for Health and Care Research (UK).
Who is the main contact?
Dr Susie Pearce, susie.pearce@plymouth.ac.uk
Contact information
Principal investigator, Scientific
University of Plymouth
Intercity Place
Plymouth
PL4 6AB
United Kingdom
 ORCID ID |
0000-0003-0177-5732 |
|---|---|
| Phone | +44 7791796021 |
| susie.pearce@plymouth.ac.uk |
Public
University of Plymouth
Intercity Place
Plymouth
PL4 6AB
United Kingdom
| Phone | +44 7731664168 |
|---|---|
| gina.kallis@plymouth.ac.uk |
Study information
| Primary study design | Observational |
|---|---|
| Observational study design | Participatory realist study including case studies |
| Scientific title | Care of people at the end of their lives in the rural and coastal communities of the South West Peninsula of England: A participatory realist evaluation |
| Study objectives | |
| Ethics approval(s) |
1. Approved 28/11/2025, University of Plymouth Faculty of Health Staff Research Ethics and Integrity Committee (University of Plymouth, Drake Circus, Plymouth, PL4 8AA, United Kingdom; no telephone number provided; research.ethics@plymouth.ac.uk), ref: Project Ids: 6647 & 6574 2. Approved 19/11/2025, Wales REC 6 (Castlebridge 4, 15-19 Cowbridge Road East, Cardiff, CF11 9AB, United Kingdom; no telephone number provided; Wales.REC6@wales.nhs.uk), ref: 25/WA/0309 |
| Health condition(s) or problem(s) studied | People at the end of life, family members and professionals |
| Intervention | The study will use a participatory realist approach with four work packages (WP) which will run concurrently across 28 months. WP1. 12 Case studies across the 6 geographical networks for EoL care and 6 population groups including interviews with patients, family, health care and voluntary sector professionals; focused ethnographies; and focus groups. WP 2. Survey with EoL leads across the UK, and 30 – 35 interviews with local and national stakeholders, EoL care policy analysis, systematic review of global innovations to address challenges to providing EoL care in rural and coastal areas. WP3. Analysis of routine data collected using local and national data sets. WP4. Synthesis of WP 1-3. Six workshops will take place with stakeholder groups to support development and refinement of programme theory, stakeholder involvement, knowledge exchange, and policy impact. |
| Intervention type | Other |
| Primary outcome measure(s) |
|
| Key secondary outcome measure(s) | |
| Completion date | 31/01/2028 |
Eligibility
| Participant type(s) | |
|---|---|
| Age group | Mixed |
| Lower age limit | 18 Years |
| Upper age limit | 105 Years |
| Sex | All |
| Target sample size at registration | 320 |
| Key inclusion criteria | 1. Male or female. Aged 18 years or over 2. Patients and family members must live in a rural or coastal location within the SW Peninsula (Devon, Cornwall, Somerset). 3. Able and willing to provide informed consent 4. Able to communicate in English (or with support if translation is needed) 5. Patients must be towards the end of life (within the last 12 months) (Harding and Higginson 2010) 6. Family members must be bereaved or currently caring for someone approaching the end of life (and six weeks since bereavement) 7. Professionals must be working within primary, community, acute, social care or voluntary sector services supporting people at the end of life 8. Professionals must be based within one of the identified geographical or population case study areas |
| Key exclusion criteria | 1. Aged under 18 years 2. Not living or working in a rural or coastal location within the SW Peninsula (Devon, Cornwall, Somerset) 3. Unable and unwilling to provide informed consent 4. Unable to communicate in English (or with support if translation is needed) 5. Patients not towards the end of life 6. Professionals based outside the identified geographical or population case study areas |
| Date of first enrolment | 20/02/2026 |
| Date of final enrolment | 31/01/2028 |
Locations
Countries of recruitment
- United Kingdom
- England
- Northern Ireland
- Scotland
- Wales
Study participating centres
Turnchapel
Plymouth PL9 9XA
Plymouth
PL9 9XA
England
Heron Drive
Taunton
TA1 5HA
Taunton
TA1 5HA
England
Deer Park Road
Barnstaple
EX32 0HU
England
St. Austell
PL26 6AB
England
Torquay
TQ2 5LS
England
Exeter
EX2 5JJ
England
Results and Publications
| Individual participant data (IPD) Intention to share | No |
|---|---|
| IPD sharing plan summary | Not expected to be made available |
| IPD sharing plan |
Editorial Notes
01/04/2026: Trial's existence confirmed by NHS HRA.
