Opportunities and challenges in involving people with lived experience of inclusion health as co-researchers in palliative and end of life research: a rapid review and thematic synthesis

Abstract

Background Co-research is a collaborative approach to research, promoting involvement of individuals with lived experience of a research area as experts by experience. Recently, the importance of co-research within palliative and end of life care (PEoLC) has been highlighted, yet few recommendations exist regarding best practice for involving inclusion health groups (i.e., groups that are socially excluded, typically experiencing multiple disadvantages that contribute to poor health outcomes). Aims To identify and synthesise qualitative literature outlining barriers and facilitators for involving four inclusion health groups (individuals with lived experience of: homelessness, substance use disorder, incarceration or exchanging sex for money) in PEoLC research, from the perspectives of both the researchers and individuals with lived experience. Methods This report is a rapid review with thematic synthesis methodology. Three electronic databases were searched (2012–30th August 2022). Thematic synthesis was used to generate themes across qualitative studies. Results Three qualitative studies were eligible for inclusion. Two involved individuals with lived experience of incarceration, and one lived experience of homelessness. No papers outlined best-practice guidance for co-research; all offered reflections on the co-research process. Challenges for involvement included: facilitating appropriate reimbursement; overcoming stigma; fear of tokenism; pre-conceived views and the emotional burden of research. Successes and benefits included: advanced level of insight, a two-way learning opportunity and relatability of lived experience co-researchers. Conclusions This review did not identify any best-practice guidance for co-production of PEoLC research with inclusion health groups. There are few, good quality, qualitative studies offering insight into challenges and facilitators for lived experience co-researcher involvement. Further research and formal policy development is required to produce formal best-practice guidance to support safe, impactful inclusion in PEoLC research. Plain English Summary It is important that researchers work together with people who have lived experience of the topic they are researching. Palliative care is specialised medical care for people living with a terminal illness. There is some collaboration between researchers and people with lived experience in palliative and end-of-life care research. However, some groups of people have been excluded. This includes people experiencing homelessness, or people with drug or alcohol addictions. This review aimed to understand what works and what doesn’t work when involving four excluded groups in palliative and end-of-life research. These groups were people experiencing homelessness, those who had spent time in prison, people with drug or alcohol disorders, and people who exchanged sex for money. This review used a shortened methodology, which allowed it to be done quickly. Three online academic databases (Medline, PubMed, PsychINFO) were searched for research projects: three papers were included in the review. No clear guidance for working with these groups was found. Analysis identified themes across papers. Challenges for collaboration included: appropriate payment methods; overcoming stigma; fear of being talked down to,; assumptions made before meeting people, and the potential of becoming upset. Successes and benefits included: better understanding of the research topic, the opportunity to learn from one another, and how research participants could relate to lived experience co-researchers. There are few, good quality papers, but more research is needed to produce guidance to support safe, impactful collaboration.

Rapid reviews methods series: guidance on rapid qualitative evidence synthesis

“…Thematic synthesis: first choice method for rQES. 45 For example, in their rapid QES Crooks and colleagues 44 used a thematic synthesis to understand the experiences of both academic and lived experience coresearchers within palliative and end of life research. 45 Framework synthesis: alternative where a suitable framework can be speedily identified.…”

“…The CQIMG endorses three types of synthesis; thematic synthesis, framework synthesis and meta-ethnography (box 1). 43 44 Rapid QES favour descriptive thematic synthesis45 or framework synthesis,46 47 except when theory generation (meta-ethnography48 49 or analytical thematic synthesis) is a priority (table 2, item R17).…”

Involving lived experience in regional efforts to address gambling-related harms: going beyond ‘window dressing’ and ‘tick box exercises’

“…Lived Experience (LE), or “knowing from experience”, refers to people’s direct or indirect experiential knowledge of an issue or service [ 1 ]. LE involvement in mental health services and research is longstanding [ 2 , 3 ] and recognised as important in public health [ 4 – 7 ], where it echoes established approaches to public involvement and asset-based community development [ 8 ]. The emphasis on knowledge in LE distinguishes it from Patient and Public Involvement and Engagement (PPIE), although PPIE can be an engagement route for involving ‘experts by Lived Experience’, or ‘people with Lived Experience’ (PLE).…”

Involving people with lived experience of homelessness in palliative and end of life care research: key considerations from experts in the field

“…However, the critical overlap of these two fields is yet to be considered. A recent rapid review by this research team identified only three papers reflecting on co-production of palliative care research for inclusion health groups [ 30 ]. Within this, only one paper discussed involvement of PWLE homelessness [ 31 ].…”