Incorporating the voice of young people in mental health research: reflections from three lived experience advisory panels in Latin America

Abstract Background Involving people with lived experience in research has been increasingly recognised as a priority. This article details the development and implementation of three Lived Experience Advisory Panels (LEAP) and reports their evaluation of the experience. The LEAPs involved young peo...

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Main Authors: Liliana Hidalgo-Padilla, Daniela Ramirez-Meneses, Karen Ariza-Salazar, Santiago Cesar Lucchetti, Natividad Olivar, Diliniya Stanislaus Sureshkumar, Catherine Fung, Luis Ignacio Brusco, Carlos Gómez-Restrepo, José Miguel Uribe-Restrepo, Stefan Priebe, Francisco Diez-Canseco
Format: Article
Language:English
Published: BMC 2025-04-01
Series:Research Involvement and Engagement
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Online Access:https://doi.org/10.1186/s40900-025-00703-5
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author Liliana Hidalgo-Padilla
Daniela Ramirez-Meneses
Karen Ariza-Salazar
Santiago Cesar Lucchetti
Natividad Olivar
Diliniya Stanislaus Sureshkumar
Catherine Fung
Luis Ignacio Brusco
Carlos Gómez-Restrepo
José Miguel Uribe-Restrepo
Stefan Priebe
Francisco Diez-Canseco
author_facet Liliana Hidalgo-Padilla
Daniela Ramirez-Meneses
Karen Ariza-Salazar
Santiago Cesar Lucchetti
Natividad Olivar
Diliniya Stanislaus Sureshkumar
Catherine Fung
Luis Ignacio Brusco
Carlos Gómez-Restrepo
José Miguel Uribe-Restrepo
Stefan Priebe
Francisco Diez-Canseco
author_sort Liliana Hidalgo-Padilla
collection DOAJ
description Abstract Background Involving people with lived experience in research has been increasingly recognised as a priority. This article details the development and implementation of three Lived Experience Advisory Panels (LEAP) and reports their evaluation of the experience. The LEAPs involved young people from Latin America with experiences of emotional distress, aimed at advising a youth mental health research programme. Methods Online meetings were conducted within each LEAP in Bogotá, Lima and Buenos Aires to gather feedback at different stages of the programme. Additional activities included a Joint LEAP meeting and a focus group to explore the members’ experiences of LEAP participation. Results During the LEAP meetings, 25 members (Bogotá n = 9, Lima n = 10, Buenos Aires n = 6) provided feedback on study data collection tools and materials, recruitment and dissemination strategies, and discussed preliminary results, which were significant in shaping study materials and processes. They valued the comfort and connection with researchers and peers during discussions about mental health topics, as well as the opportunity to inform a large-scale project with their lived experiences. However, challenges in the recruitment and engagement led to fluctuating participation, while socioeconomic and cultural barriers may have influenced access. Conclusions The implementation of the LEAPs is an example of involving young Latin Americans with experiences of emotional distress in research. Future efforts should focus on overcoming structural limitations and fostering equitable collaboration, emphasising the need for youth perspectives in mental health research, particularly in low- and middle-income countries.
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spelling doaj-art-d543f6c2c8b74f4dae925f2a4cc3b4482025-08-20T02:17:59ZengBMCResearch Involvement and Engagement2056-75292025-04-0111111110.1186/s40900-025-00703-5Incorporating the voice of young people in mental health research: reflections from three lived experience advisory panels in Latin AmericaLiliana Hidalgo-Padilla0Daniela Ramirez-Meneses1Karen Ariza-Salazar2Santiago Cesar Lucchetti3Natividad Olivar4Diliniya Stanislaus Sureshkumar5Catherine Fung6Luis Ignacio Brusco7Carlos Gómez-Restrepo8José Miguel Uribe-Restrepo9Stefan Priebe10Francisco Diez-Canseco11CRONICAS Center of Excellence in Chronic Diseases, Universidad Peruana Cayetano HerediaCRONICAS Center of Excellence in Chronic Diseases, Universidad Peruana Cayetano HerediaDepartment of Clinical Epidemiology and Biostatistics, Pontificia Universidad JaverianaDepartment of Psychiatry and Mental Health, Faculty of Medicine, University of Buenos AiresDepartment of Psychiatry and Mental Health, Faculty of Medicine, University of Buenos AiresUnit for Social and Community Psychiatry, Wolfson Institute of Population Health, Queen Mary University of LondonUnit for Social and Community Psychiatry, Wolfson Institute of Population Health, Queen Mary University of LondonDepartment of Psychiatry and Mental Health, Faculty of Medicine, University of Buenos AiresDepartment of Clinical Epidemiology and Biostatistics, Pontificia Universidad JaverianaDepartment of Psychiatry and Mental Health, Pontificia Universidad JaverianaCentre for Psychosocial Medicine, University of HamburgCRONICAS Center of Excellence in Chronic Diseases, Universidad Peruana Cayetano HerediaAbstract Background Involving people with lived experience in research has been increasingly recognised as a priority. This article details the development and implementation of three Lived Experience Advisory Panels (LEAP) and reports their evaluation of the experience. The LEAPs involved young people from Latin America with experiences of emotional distress, aimed at advising a youth mental health research programme. Methods Online meetings were conducted within each LEAP in Bogotá, Lima and Buenos Aires to gather feedback at different stages of the programme. Additional activities included a Joint LEAP meeting and a focus group to explore the members’ experiences of LEAP participation. Results During the LEAP meetings, 25 members (Bogotá n = 9, Lima n = 10, Buenos Aires n = 6) provided feedback on study data collection tools and materials, recruitment and dissemination strategies, and discussed preliminary results, which were significant in shaping study materials and processes. They valued the comfort and connection with researchers and peers during discussions about mental health topics, as well as the opportunity to inform a large-scale project with their lived experiences. However, challenges in the recruitment and engagement led to fluctuating participation, while socioeconomic and cultural barriers may have influenced access. Conclusions The implementation of the LEAPs is an example of involving young Latin Americans with experiences of emotional distress in research. Future efforts should focus on overcoming structural limitations and fostering equitable collaboration, emphasising the need for youth perspectives in mental health research, particularly in low- and middle-income countries.https://doi.org/10.1186/s40900-025-00703-5Lived experienceParticipationPublicPatient participationMental healthAmericas
spellingShingle Liliana Hidalgo-Padilla
Daniela Ramirez-Meneses
Karen Ariza-Salazar
Santiago Cesar Lucchetti
Natividad Olivar
Diliniya Stanislaus Sureshkumar
Catherine Fung
Luis Ignacio Brusco
Carlos Gómez-Restrepo
José Miguel Uribe-Restrepo
Stefan Priebe
Francisco Diez-Canseco
Incorporating the voice of young people in mental health research: reflections from three lived experience advisory panels in Latin America
Research Involvement and Engagement
Lived experience
Participation
Public
Patient participation
Mental health
Americas
title Incorporating the voice of young people in mental health research: reflections from three lived experience advisory panels in Latin America
title_full Incorporating the voice of young people in mental health research: reflections from three lived experience advisory panels in Latin America
title_fullStr Incorporating the voice of young people in mental health research: reflections from three lived experience advisory panels in Latin America
title_full_unstemmed Incorporating the voice of young people in mental health research: reflections from three lived experience advisory panels in Latin America
title_short Incorporating the voice of young people in mental health research: reflections from three lived experience advisory panels in Latin America
title_sort incorporating the voice of young people in mental health research reflections from three lived experience advisory panels in latin america
topic Lived experience
Participation
Public
Patient participation
Mental health
Americas
url https://doi.org/10.1186/s40900-025-00703-5
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