Background Co-research promotes involvement of individuals with relevant lived experience as equal members of a research team. Recently, the importance of co-research within palliative and end of life care has been highlighted. However, few recommendations exist regarding best practice for involving people from inclusion health groups as co-researchers in palliative and end of life care research (i.e., people from socially excluded groups, who typically experience multiple disadvantages that contribute to poor health).
Aim To identify and synthesise qualitative literature outlining barriers and facilitators for involving people from four inclusion health groups (individuals with lived experience of: homelessness, substance use disorders, incarceration or exchanging sex for money) in palliative and end of life care research.
Methods Rapid review with qualitative evidence synthesis. Three electronic databases were searched (2012 – 2022).Data was extracted from the perspectives of both academic researchers and lived experience co-researchers, including both first order-data (quotes from individuals with lived experience), and second order data (original authors’ interpretations). Analysis followed thematic synthesis methodology.
Results Three eligible papers were identified. Two involved individuals with experience of incarceration, and one involved people with experience of homelessness. This corresponded to eighteen individuals with lived experience. Challenges for involvement included: facilitating appropriate reimbursement; overcoming stigma and reluctance to share power; protection vs. patronisation; how lived experience affects positionality (bias and scepticism); and the emotional burden of research. Benefits included: advanced level of insight, two-way learning opportunities and the relatability of lived experience co-researchers.
Conclusions There are few, good quality studies offering insight into barriers and facilitators for lived experience co-researcher involvement in palliative and end of life care research. Greater understanding of and recommendations for safe and impactful inclusion is needed to support and encourage researchers to involve people from inclusion health groups as co-researchers in palliative and end of life care research.
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