Why is the research needed?
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.
What are we doing?
Our research aims to identify current experiences of palliative and end-of-life care within Travelling communities, while also exploring the perspectives of community organisations and healthcare professionals. It will examine potential solutions for change, with a particular focus on how primary care can be improved to better meet community needs. The study will also gather views from community members, organisations, and professionals on how existing services can be strengthened and made more effective.
This project will interview with 15 to 25 participants, including people from Gypsy, Traveller, and Roma communities, members of travelling community-based organisations, and healthcare professionals with experience of caring for these groups. Participants will be recruited through existing networks and community-based organisations. Interviews and focus groups will be used to gather perspectives, and framework analysis will integrate findings, enabling comparisons across stakeholder groups. Data analysis will begin shortly after interviews start, allowing key topics to be explored in more depth as the study progresses.
How are we working with communities, services and organisations?
Gypsy and Traveller community members will be recruited via community-based organisations. Healthcare professionals and academic participants will be recruited through pre-existing non-NHS networks or by personal communication from the research team.
What will the impact and benefits of this research be?
The intention with this research is that we will identify where changes might be made within palliative and end of life care. The finings regarding how best to undertake collaborative research with Gypsy and Traveller communities will help to guide future research in this area.
What do we have planned for knowledge mobilisation and implementation?
Plan for publication with associated social media activity to disseminate findings. This work will help guide future research rather than result in service change that is ready for implementation.
Related papers, outputs and resources
Manuscript currently in production
Who is involved?
- Principal Investigator: Dr Kathryn Dixon, University of Cambridge
- Dr Anna Spathis, University of Cambridge
- Professor Stephen Barclay, University of Cambridge
- Professor Ewen Speed, University of Essex
Get in contact
Email Dr Kathryn Dixon at kcd23@medschl.cam.ac.uk.
Project MH57
Project PEOLC50
Project PEOLC49
Project PEOLC48
Project PEOLC47
Project PEOLC46