The role of Emotions in Patient and Public Involvement in health research; A literature review and practice recommendations

Article type
Authors
Liabo K1, Asare L1, Ruthen P1, Burton J1, Staunton P1, Day J1
1University of Exeter, Exeter, Devon, United Kingdom
Abstract
Background

Patient and Public involvement (PPI) is an established component of evidence synthesis yet aspects of the practice of PPI are not yet fully understood. Some of the experiences that bring both patients and researchers to Patient and Public Involvement (PPI) can be highly emotive and many commonly reviewed topics in evidence synthesis speak to the personal experiences of those involved. Emotions in formal research meetings can feel uncomfortable and there is uncertainty about how to accommodate them.

Objective

To investigate the role that emotions play in PPI, and to generate practical suggestions for incorporating this knowledge into PPI for evidence synthesis.

Methods

This narrative review examined the role of emotions in PPI. A search was conducted, using SCOPUS, from inception to 2022 using terms for the concepts of PPI and Emotions. Searches were complemented with studies identified elsewhere, primarily theory-generating articles or literature from other areas than health.

Results

We included18 studies which revealed several themes surrounding emotions in patient and public involvement, such as the challenges brought about from emotions in PPI, the benefits of encouraging emotional contributions in PPI, and the role that researchers can have in managing emotions in PPI. We present practice recommendations for researchers, co-produced with PPI members, to enable space for emotions in PPI collaborations. These include acknowledging and supporting emotional contributions in evidence synthesis research.

Conclusions

Emotions can play an important role in PPI, but this can be challenging for both public members and researchers. Meetings should be facilitated in a way that appropriately supports and acknowledges the emotional work of sharing knowledge to support evidence synthesis.

Relevance to patients

Making room for a range of emotions is an important aspect of PPI in evidence synthesis research, so that reviews can be conducted in a manner which does justice to the topics that speak to patient and public collaborators’ experiences.