RESUMO
BACKGROUND: Experiential knowledge can aid in designing research by highlighting what an idea looks like from a patient and carer perspective. Experiential knowledge can be emotional, and this can create challenges at formal research meetings. OBJECTIVE: The aim of this study was to consider the role of emotions in public involvement. METHODS: This is a conceptual review informed by relevant literature and reflection within the author team. A structured Scopus search was conducted in November 2021 and December 2022, identifying 18 articles that presented findings from patient and public involvement (PPI) research related to 'emotion'. We complemented the search with theory-generating articles related to the role of emotion and emotional labour in human life. FINDINGS: Study findings from the structured search were tabulated to identify recurring themes; these were as follows: emotional connections to the research topic can cause stressful as well as cathartic experiences of PPI, 'emotional work' is part of PPI when people are contributing with their experiential knowledge and the emotional aspect of 'lived experience' needs to be recognised in how PPI is planned and facilitated. These points were considered in relation to theoretical works and experiences within the author team. DISCUSSION: 'Emotion work' is often required of public collaborators when they contribute to research. They are asked to contribute to research alongside researchers, with knowledge that often contains emotions or feelings. This can be both upsetting and cathartic, and the environment of the research study can make the experience worse or better. CONCLUSIONS: The emotional component of experiential knowledge can be challenging to those invited to share this knowledge. It is imperative that researchers, research institutions and health and care professionals adjust research meeting spaces to show an awareness of the emotional labour that is involved in PPI. PATIENT OR PUBLIC CONTRIBUTION: This review was initiated after a meeting between carers and family members of residents in care homes and researchers. The review is co-written by a group of three researchers and three carers and family members. Regular online meetings were held during the draft stages to incorporate people's views and ideas. Data extracted from the review were presented to the group of public collaborators in a variety of formats (e.g., posters, slideshows, text and verbally) to facilitate shared sense-making and synthesis of the literature.
