This project aims to understand the palliative and end of life care experiences of people from Travelling communities, specifically in relation to care from primary care healthcare professionals such as GPs or district nurses and community palliative care services.
Travelling communities are collectively Europe’s largest minority ethnic group. They experience worse health outcomes than non-travelling communities. Previous research looking at palliative and end of life care in these groups has identified barriers to accessing care. These can include lack of cultural awareness by healthcare professionals whereby the needs of Travellers are not known and not provided. These needs include a central role for family at the end of life so that large numbers of family members visit a dying person. Previous research identified that people from Travelling communities can feel the need to hide their ethnicity in the healthcare setting, for fear of being treated differently. Tensions between Travellers and healthcare professionals have also been found, in relation to specific ways to improve palliative and end of life care experiences, with both groups not always agreeing on the changes needed. Most of the research in this area so far has focused on experiences, rather than potential solutions. There has also been a focus on hospice and hospital care. This new project aims to bring the focus back to primary care level (GP and district nurses) and consider Traveller experiences of primary care led palliative care, and how we can make changes to address the needs of these communities.
Summary of Project:
This project will involve interviews with 15 to 25 people. Participants will be people from Gypsy, Traveller or Roma communities, members of Travelling community-based organisations, and healthcare professionals who have experience caring for people from these communities. Participants will be contacted via existing networks and community members via community-based organisations. Analysis of the interview data will start shortly after interviews begin, so that any key topics can be explored further in subsequent interviews.
- What are the unmet palliative and end of life care needs of Travelling communities?
- How can we work together to improve primary care led palliative care in these communities?
- Identify the current experiences of palliative and end of life care within Travelling communities.
- Investigate the views of Travelling community organisations and healthcare professionals regarding palliative and end of life care.
- Identify the potential solutions for change, specifically focusing on how changes can be made in a primary care setting to improve experiences of palliative and end of life care within Travelling communities.
- To find out how people from these communities, and organisations and healthcare professionals that work with them, think we could improve the services that currently exist.
- Submit protocol for project to Research Ethics Committee (university-level)
- Recruit participants and conduct interviews
- Transcription of interviews
- Framework analysis
- Transcription and coding will start soon after interviews commence to enable updating of the interview topic guide as the study progresses
- Write up of results
- Discussion of findings with PPI group to begin planning project involving co-design of service change in primary care led palliative care
Anticipated or actual outputs
Anticipated outputs include a peer-reviewed research study and a proposal for a doctoral project involving co-designed service change in primary-care led palliative care for people from Travelling communities. The results of this study will be used to springboard PPIE prior to doctoral project design.
Who is involved?
- Dr Kathryn Dixon (PI and corresponding author, University of Cambridge)
- Dr Anna Spathis (University of Cambridge)
- Professor Stephen Barclay (University of Cambridge)
- Professor Ewen Speed (University of Essex)