Development of the TIFFIN recommendations for co-producing palliative and end-of-life care research with individuals with lived experience of homelessness: A qualitative study

Sage Palliative Medicine & Chronic Care

This episode features Jodie Crooks (Marie Curie, London, UK) and Dr Briony Hudson (Marie Curie, London, UK; Marie Curie Palliative Care Research Department, University College London, London, UK).

What is already known about the topic?

• Research into palliative care for people experiencing homelessness is complex and requires input from people with lived experience.
• There is a dearth of evidence and/or guidance in how to support researchers to involve people with lived experience of homelessness in palliative care research.

What this paper adds?

• Co-production of palliative and end-of-life-care research with people with lived experience of homelessness needs to be transparent, prioritise building rapport, be trauma-informed and person-centred.
• Reimbursement should always be offered to co-producers. The method of reimbursement should consider the context of involvement (i.e. the individual’s circumstances) where possible.
• There is a need to evidence the impact of involvement, to facilitate a change in research culture which prioritises hearing the voices of different groups.

Implications for practice, theory, or policy

• Involving people with lived experience of homelessness can help researchers to identify unknown unknowns within the field of palliative care: it can validate, enhance and direct research to the intricacies of their experiences.
• The TIFFIN recommendations provide guidance for how to achieve co-production within this field in a trauma informed way.

Full paper available from:

https://journals.sagepub.com/doi/full/10.1177/02692163241259667

If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:

[email protected]