Palliative care and homelessness: reflections on a co-produced qualitative research study

People experiencing homelessness often don't have access to the palliative and end-of-life care they may need. To understand how this can be improved, it is important to collaborate with people with lived experience of homelessness when carrying out research. This can add more depth and insight from experience and ultimately create better evidence to improve systems, services and experiences. Since the publication of the TIFFIN recommendations, which support co-production in the field of palliative care and homelessness research, we have implemented these within our research. The current paper describes reflections from team members on a co-produced research project exploring attitudes to death cafes among people with lived experience of homelessness. These learnings could support wider implementation of safe, meaningful co-production in this field, with implications for co-produced research in other fields.

We provide a summary of how we implemented the TIFFIN recommendations in the death cafe study, and reflections and learnings from all four team members on this process and on working collaboratively. All team members kept a diary throughout the project. These diaries logged thoughts and reflections pertaining to the research process and involvement. Entries were not scheduled; team members could add to them as they felt necessary. Verbal, group reflections were also gathered at several points during the research.

The TIFFIN recommendations helped us co-produce a research project. Aspects which were particularly important were building rapport between team members and facilitating equitable approaches to involvement. For this project, navigating institutional attitudes and resistance was not a major issue, which may be linked to the established relationships between partner organizations.