Designing a Library of Lived Experience for Mental Health (LoLEM): Protocol for integrating a realist synthesis and Experience Based Codesign approach

Lobban, Fiona; Marshall, Paul; Barbrook, John; Collins, Grace; Foster, Sheena; Glossop, Zoe; Inkster, Clare; Jebb, Paul; Johnston, Rose; Khan, Hameed; Lodge, Chris; Machin, Karen; Michalak, Erin; Powell, Sarah; Rycroft-Malone, Jo; Slade, Mike; Whittaker, Lesley; Jones, Steve

Abstract

Introduction: People with lived expertise in managing mental health challenges can be an important source of knowledge and support for other people facing similar challenges, and for carers to learn how best to help. However, opportunities for sharing lived expertise are limited. Living libraries support people with lived expertise to be ‘living books’, sharing their experiences in dialogue with ‘readers’ who can ask questions. Living libraries have been piloted worldwide in health-related contexts but without a clear model of how they work or rigorous evaluation of their impacts. We aim to develop a programme theory about how a living library could be used to improve mental health outcomes, using this theory to codesign an implementation guide that can be evaluated across different contexts.

Methods and analysis: We will use a novel integration of realist synthesis and experience-based codesign (EBCD) to produce a programme theory about how living libraries work and a theory and experience informed guide to establishing a library of lived experience for mental health (LoLEM). Two workstreams will run concurrently: (1) a realist synthesis of literature on living libraries, combined with stakeholder interviews, will produce several programme theories; theories will be developed collaboratively with an expert advisory group of stakeholders who have hosted or taken part in a living library and will form our initial analysis framework; a systematic search will identify literature about living libraries; data will be coded into our analysis framework, and we will use retroductive reasoning to explain living libraries’ impacts across multiple contexts. Individual stakeholder interviews will help refine and test theories; (2) data from workstream 1 will inform 10 EBCD workshops with people with experience of managing mental health difficulties and health professionals to produce a LoLEM implementation guide; data from this process will also inform the theory in workstream 1.

Ethics and dissemination: Ethical approval was granted by Coventry and Warwick National Health Service Research Ethics Committee on 29 December 2021 (reference number 305975). The programme theory and implementation guide will be published as open access and shared widely through a knowledge exchange event, a study website, mental health provider and peer support networks, peer reviewed journals and a funders report.

PROSPERO registration details CRD42022312789.

Citation

Lobban, F., Marshall, P., Barbrook, J., Collins, G., Foster, S., Glossop, Z., …Jones, S. (2023). Designing a Library of Lived Experience for Mental Health (LoLEM): Protocol for integrating a realist synthesis and Experience Based Codesign approach. BMJ Open, 13(3), Article e068548. https://doi.org/10.1136/bmjopen-2022-068548

• Journal Article Type: Article
• Acceptance Date: Feb 23, 2023
• Online Publication Date: Mar 8, 2023
• Publication Date: 2023-02
• Deposit Date: Mar 1, 2023
• Publicly Available Date: Mar 1, 2023
• Journal: BMJ Open
• Electronic ISSN: 2044-6055
• Publisher: BMJ Publishing Group
• Peer Reviewed: Peer Reviewed
• Volume: 13
• Issue: 3
• Article Number: e068548
• DOI: https://doi.org/10.1136/bmjopen-2022-068548
• Public URL: https://nottingham-repository.worktribe.com/output/17939913
• Publisher URL: https://bmjopen.bmj.com/content/13/3/e068548