From prevention to peer support: a systematic review exploring the involvement of lived-experience in eating disorder interventions

Abstract

Purpose The current policy landscape advocates for the involvement of people with lived experience in the co-production and co-delivery of mental health services. However, evidence on how to do this safely and effectively for people with eating disorders (EDs) is lacking. The purpose of this study was to explore and synthesis the implementation of ED interventions which involved lived-experience and to evaluate the associated benefits and risks to participants. Design/methodology/approach This study will conduct a systematic review of ED interventions which involve people with lived experience of an ED. A total of seven databases and four subject-specific journals were searched using Boolean search terms. Findings The search yielded ten eligible studies. Involvement procedures were extracted which highlighted variation with some roles being continuous and active and others being isolated and passive. Qualitative results were extracted and thematically analysed which demonstrated many benefits from involving people with lived experience, such as normalisation of experiences, inspiration to recover and the sharing of insight, as well as some risks such as disingenuity and exposure to triggering content. Practical implications The implications of this review highlight the need for policy and guidance to minimise variation across procedures and implementation of co-production to ensure positive outcomes and benefits for participants, given the current landscape. More research in the benefits and risks for those involved in the delivery of the interventions is needed to ensure that co-production and peer support is delivered as safely and effectively as possible. Originality/value This was the first systematic review since 2016 (Fogarty et al., 2016) to assess peer-mentorship programmes in ED treatments, whilst expanding the remit to include wider definitions of peer-support and peer-mentorships such as co-production and co-design in research.