“Are we genuinely going to have our voices heard?” The experience of co-producing a blended intervention to prevent relapse in obsessive-compulsive disorder: a qualitative study on the perspectives of experts by lived experience

Josie Millar, Nina Higson-Sweeney, Tom Jenkins, Erin Waites, Sophie Minns

Research output: Contribution to journalArticlepeer-review

Abstract

Introduction
Co-production involves researchers, practitioners and people with lived experience working in a collaborative manner, with shared power. The potential benefits of co-production are well documented. However, there is little research describing the experience of having been involved in co-production from the perspective of Experts By Lived Experience (EBLE). The aim of the present study is to explore the experiences of EBLE of obsessive-compulsive disorder (OCD) on their involvement in co-producing a blended intervention to prevent relapse for OCD.

Methods
Five EBLE took part in semi-structured interviews enquiring about their experiences of co-producing a relapse prevention intervention. Reflexive thematic analysis was used to analyse the data.

Results
Four themes were developed: (1) Welcome but unexpected therapeutic benefits; (2) The parameters of a safe space; (3) Genuine co-production brings meaningful change; and (4) Navigating the challenging terrain of co-production.

Conclusions
Overall, EBLE reported their involvement in the co-production process to have had positive impacts on both the development of the intervention and their own personal recovery journey. EBLE valued the safety created within the group, and the importance this had for allowing them to speak open and honestly about their experiences and the difficulties that can arise with the nature of the work.
Original languageEnglish
Article number906
JournalBMC Psychiatry
Early online date18 Dec 2024
DOIs
Publication statusPublished - 18 Dec 2024

Data Availability Statement

The datasets generated and analysed during the current study are not publicly available due preservation of confidentiality and anonymity of the participants but are available from the corresponding author on reasonable request.

Acknowledgements

The authors would like to acknowledge and thank all of the Experts By Lived Experience that took part in the steering group and the current study. The authors would like to thank Abigail Bradley and Yi Zhang for their help in reviewing and editing the transcripts for accuracy.

Funding

This project was supported by the Academy of Medical Sciences UK Springboard Award [SBF006\1121].

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