Designing a library of lived experience for mental health (LoLEM): protocol for integrating a realist synthesis and experience based codesign approach

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 sup...

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Main Authors: Mike Slade, Jo Rycroft-Malone, Steven H Jones, Fiona Lobban, Sarah Powell, Hameed Khan, Paul Marshall, John Barbrook, Grace Collins, Sheena Foster, Zoe Glossop, Clare Inkster, Paul Jebb, Rose Johnston, Christopher Lodge, Karen Machin, Erin Michalak, Lesley Whittaker
Format: Article
Language:English
Published: BMJ Publishing Group 2023-03-01
Series:BMJ Open
Online Access:https://bmjopen.bmj.com/content/13/3/e068548.full
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author Mike Slade
Jo Rycroft-Malone
Steven H Jones
Fiona Lobban
Sarah Powell
Hameed Khan
Paul Marshall
John Barbrook
Grace Collins
Sheena Foster
Zoe Glossop
Clare Inkster
Paul Jebb
Rose Johnston
Christopher Lodge
Karen Machin
Erin Michalak
Lesley Whittaker
author_facet Mike Slade
Jo Rycroft-Malone
Steven H Jones
Fiona Lobban
Sarah Powell
Hameed Khan
Paul Marshall
John Barbrook
Grace Collins
Sheena Foster
Zoe Glossop
Clare Inkster
Paul Jebb
Rose Johnston
Christopher Lodge
Karen Machin
Erin Michalak
Lesley Whittaker
author_sort Mike Slade
collection DOAJ
description 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.
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spelling doaj.art-e5157f56729e47248369d47cae31b1642023-08-11T05:15:07ZengBMJ Publishing GroupBMJ Open2044-60552023-03-0113310.1136/bmjopen-2022-068548Designing a library of lived experience for mental health (LoLEM): protocol for integrating a realist synthesis and experience based codesign approachMike Slade0Jo Rycroft-Malone1Steven H Jones2Fiona Lobban3Sarah Powell4Hameed Khan5Paul Marshall6John Barbrook7Grace Collins8Sheena Foster9Zoe Glossop10Clare Inkster11Paul Jebb12Rose Johnston13Christopher Lodge14Karen Machin15Erin Michalak16Lesley Whittaker17Faculty of Medicine and Health Sciences, Nord University, Namsos, NorwayFaculty of Health and Medicine, Lancaster University, Lancaster, UKSpectrum Centre, Division of Health Research, Lancaster University, Lancaster, UKSpectrum Centre, Division of Health Research, Lancaster University, Lancaster, UKLancaster Medical School, Lancaster University, Lancaster, UKDivision of Health Research, Lancaster University, Lancaster, UKSpectrum Centre, Division of Health Research, Lancaster University, Lancaster, UKLancaster University Library, Lancaster University, Lancaster, UKFreelance participatory artist, Lancaster, UKDivision of Health Research, Lancaster University, Lancaster, UKSpectrum Centre, Division of Health Research, Lancaster University, Lancaster, UKHealth Education England North West, Manchester, UKPatient Experience, Engagement & Safeguarding, Lancashire and South Cumbria NHS Foundation Trust, Preston, UKSpectrum Centre, Division of Health Research, Lancaster University, Lancaster, UKSpectrum Centre, Division of Health Research, Lancaster University, Lancaster, UKSpectrum Centre, Division of Health Research, Lancaster University, Lancaster, UKDepartment of Psychiatry, The University of British Columbia, Vancouver, British Columbia, CanadaPatient Experience, Engagement & Safeguarding, Lancashire and South Cumbria NHS Foundation Trust, Preston, UKIntroduction 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.https://bmjopen.bmj.com/content/13/3/e068548.full
spellingShingle Mike Slade
Jo Rycroft-Malone
Steven H Jones
Fiona Lobban
Sarah Powell
Hameed Khan
Paul Marshall
John Barbrook
Grace Collins
Sheena Foster
Zoe Glossop
Clare Inkster
Paul Jebb
Rose Johnston
Christopher Lodge
Karen Machin
Erin Michalak
Lesley Whittaker
Designing a library of lived experience for mental health (LoLEM): protocol for integrating a realist synthesis and experience based codesign approach
BMJ Open
title Designing a library of lived experience for mental health (LoLEM): protocol for integrating a realist synthesis and experience based codesign approach
title_full Designing a library of lived experience for mental health (LoLEM): protocol for integrating a realist synthesis and experience based codesign approach
title_fullStr Designing a library of lived experience for mental health (LoLEM): protocol for integrating a realist synthesis and experience based codesign approach
title_full_unstemmed Designing a library of lived experience for mental health (LoLEM): protocol for integrating a realist synthesis and experience based codesign approach
title_short Designing a library of lived experience for mental health (LoLEM): protocol for integrating a realist synthesis and experience based codesign approach
title_sort designing a library of lived experience for mental health lolem protocol for integrating a realist synthesis and experience based codesign approach
url https://bmjopen.bmj.com/content/13/3/e068548.full
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