No decision about me, without me: Collaborating with young people in mental health research

Abstract Involving young people with lived experience in youth mental health research is important. In recognition of the value of collaborating with experts by experience, international funders are increasingly mandating that mental health research is developed by teams that include individuals fro...

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Main Authors: Alex Lloyd, Tom (Chin‐Han) Wu, Laura Lucas, Adeola Agunbiade, Romana Saleh, Pasco Fearon, Essi Viding
Format: Article
Language:English
Published: Wiley 2024-12-01
Series:JCPP Advances
Subjects:
Online Access:https://doi.org/10.1002/jcv2.12291
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author Alex Lloyd
Tom (Chin‐Han) Wu
Laura Lucas
Adeola Agunbiade
Romana Saleh
Pasco Fearon
Essi Viding
author_facet Alex Lloyd
Tom (Chin‐Han) Wu
Laura Lucas
Adeola Agunbiade
Romana Saleh
Pasco Fearon
Essi Viding
author_sort Alex Lloyd
collection DOAJ
description Abstract Involving young people with lived experience in youth mental health research is important. In recognition of the value of collaborating with experts by experience, international funders are increasingly mandating that mental health research is developed by teams that include individuals from the population of study. Yet, research into how Patient Public Involvement, specifically co‐production and co‐design, is implemented in youth mental health research is limited to date. The current review examined this question and identified common practices for collaborating with experts by experience in young people's mental health research. Academic databases were systematically searched for studies that had involved young people in mental health research, had described these activities, and had reported some demographic information about the experts by experience. From a total of 2130 studies that were screened, 37 studies were eligible for inclusion. The use of co‐production and co‐design spanned a wide range of topics, including interventions, digital support tools and psychometric studies. Interactive workshops were the primary method of engaging experts by experience, although some studies utilised interviews or focus groups. From the reviewed studies we identified common methodological practices including: Scene setting, utilising a cyclical process, ensuring appropriate engagement and recognition of the cultural context. We draw on these findings to suggest common methods for conducting co‐production and co‐design activities, and emphasise the importance of ensuring experts by experience are respected and safeguarded throughout their collaboration in research. We also outline areas that deserve future attention and development, and include a response from two young people aged 16–18 and their suggestions for improving and extending co‐production methods.
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spelling doaj-art-31a75641295f48a6b75d8d2415b89ab62024-12-26T08:11:41ZengWileyJCPP Advances2692-93842024-12-0144n/an/a10.1002/jcv2.12291No decision about me, without me: Collaborating with young people in mental health researchAlex Lloyd0Tom (Chin‐Han) Wu1Laura Lucas2Adeola Agunbiade3Romana Saleh4Pasco Fearon5Essi Viding6Clinical, Educational and Health Psychology, Psychology and Language Sciences University College London London UKClinical, Educational and Health Psychology, Psychology and Language Sciences University College London London UKClinical, Educational and Health Psychology, Psychology and Language Sciences University College London London UKYoung People's Advisory Group London UKYoung People's Advisory Group London UKClinical, Educational and Health Psychology, Psychology and Language Sciences University College London London UKClinical, Educational and Health Psychology, Psychology and Language Sciences University College London London UKAbstract Involving young people with lived experience in youth mental health research is important. In recognition of the value of collaborating with experts by experience, international funders are increasingly mandating that mental health research is developed by teams that include individuals from the population of study. Yet, research into how Patient Public Involvement, specifically co‐production and co‐design, is implemented in youth mental health research is limited to date. The current review examined this question and identified common practices for collaborating with experts by experience in young people's mental health research. Academic databases were systematically searched for studies that had involved young people in mental health research, had described these activities, and had reported some demographic information about the experts by experience. From a total of 2130 studies that were screened, 37 studies were eligible for inclusion. The use of co‐production and co‐design spanned a wide range of topics, including interventions, digital support tools and psychometric studies. Interactive workshops were the primary method of engaging experts by experience, although some studies utilised interviews or focus groups. From the reviewed studies we identified common methodological practices including: Scene setting, utilising a cyclical process, ensuring appropriate engagement and recognition of the cultural context. We draw on these findings to suggest common methods for conducting co‐production and co‐design activities, and emphasise the importance of ensuring experts by experience are respected and safeguarded throughout their collaboration in research. We also outline areas that deserve future attention and development, and include a response from two young people aged 16–18 and their suggestions for improving and extending co‐production methods.https://doi.org/10.1002/jcv2.12291co‐designco‐productiondevelopmental psychopathologyparticipatory researchPPI
spellingShingle Alex Lloyd
Tom (Chin‐Han) Wu
Laura Lucas
Adeola Agunbiade
Romana Saleh
Pasco Fearon
Essi Viding
No decision about me, without me: Collaborating with young people in mental health research
JCPP Advances
co‐design
co‐production
developmental psychopathology
participatory research
PPI
title No decision about me, without me: Collaborating with young people in mental health research
title_full No decision about me, without me: Collaborating with young people in mental health research
title_fullStr No decision about me, without me: Collaborating with young people in mental health research
title_full_unstemmed No decision about me, without me: Collaborating with young people in mental health research
title_short No decision about me, without me: Collaborating with young people in mental health research
title_sort no decision about me without me collaborating with young people in mental health research
topic co‐design
co‐production
developmental psychopathology
participatory research
PPI
url https://doi.org/10.1002/jcv2.12291
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