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Strengthening mental health research outcomes through genuine partnerships with young people with lived or living experience: A pilot evaluation study
BACKGROUND: Despite increasing support for stakeholder inclusion in research, there is limited evaluative research to guide safe (i.e., youth‐friendly) and meaningful (i.e., non‐tokenistic) partnerships with young people with lived experience of mental ill‐health in research. This paper describes a...
Autores principales: | , , , , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
John Wiley and Sons Inc.
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10349217/ https://www.ncbi.nlm.nih.gov/pubmed/37195575 http://dx.doi.org/10.1111/hex.13777 |
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author | Lee, Grace Yeeun McKenna, Sarah Song, Yun Ju C. Hutcheon, Alexis Hockey, Samuel J. Laidler, Rachael Occhipinti, Jo‐An Perry, Claudia Lindsay‐Smith, Tara Ramsay, Annabel Choi, Skye Feirer, Dakota Shim, Andrew W. Cottle, Jessica Mukherjee, Anith New, Joshua Yu, Rebecca Scott, Elizabeth Mary Freebairn, Louise Hickie, Ian Bernard |
author_facet | Lee, Grace Yeeun McKenna, Sarah Song, Yun Ju C. Hutcheon, Alexis Hockey, Samuel J. Laidler, Rachael Occhipinti, Jo‐An Perry, Claudia Lindsay‐Smith, Tara Ramsay, Annabel Choi, Skye Feirer, Dakota Shim, Andrew W. Cottle, Jessica Mukherjee, Anith New, Joshua Yu, Rebecca Scott, Elizabeth Mary Freebairn, Louise Hickie, Ian Bernard |
author_sort | Lee, Grace Yeeun |
collection | PubMed |
description | BACKGROUND: Despite increasing support for stakeholder inclusion in research, there is limited evaluative research to guide safe (i.e., youth‐friendly) and meaningful (i.e., non‐tokenistic) partnerships with young people with lived experience of mental ill‐health in research. This paper describes a pilot evaluation and iterative design of a Youth Lived Experience Working Group (LEWG) protocol that was established by the Youth Mental Health and Technology team at The University of Sydney's Brain and Mind Centre, based on the results of two studies. METHODS: Study one consisted of a pilot evaluation of the extent to which youth partners felt empowered to contribute, to qualitatively explore how LEWG processes could be improved. Youth partners completed online surveys, and results were shared over two LEWG meetings in 2021 to empower youth partners to collectively identify actions of positive change regarding LEWG processes. These meetings were audio‐recorded and transcripts were subsequently coded using thematic analysis. Study two assessed whether LEWG processes and proposed improvements were acceptable and feasible from the perspective of academic researchers via an online survey in 2022. RESULTS: Quantitative and qualitative data collected from nine youth partners and 42 academic researchers uncovered initial learnings regarding facilitators, motivators, and barriers to partnering with young people with lived experience in research. Implementing clear processes for youth partners and academic researchers on effective partnership strategies, providing training opportunities for youth partners to develop research skills, and providing regular updates on how youth partner contributions led to research outcomes were identified as key facilitators. CONCLUSIONS: This pilot study provides insight into a growing international field on how to optimise participatory processes so that researchers and young people with lived experience can be better supported and engaged to make meaningful contributions to mental health research. We argue that more transparency is needed around participatory research processes so that partnerships with young people with lived experience are not merely tokenistic. CONSUMER CONTRIBUTIONS: Our study has also been approved by and reflects the concepts and priorities of our youth lived experience partners and lived experience researchers, all of whom are authors of this paper. |
format | Online Article Text |
id | pubmed-10349217 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | John Wiley and Sons Inc. |
record_format | MEDLINE/PubMed |
spelling | pubmed-103492172023-07-16 Strengthening mental health research outcomes through genuine partnerships with young people with lived or living experience: A pilot evaluation study Lee, Grace Yeeun McKenna, Sarah Song, Yun Ju C. Hutcheon, Alexis Hockey, Samuel J. Laidler, Rachael Occhipinti, Jo‐An Perry, Claudia Lindsay‐Smith, Tara Ramsay, Annabel Choi, Skye Feirer, Dakota Shim, Andrew W. Cottle, Jessica Mukherjee, Anith New, Joshua Yu, Rebecca Scott, Elizabeth Mary Freebairn, Louise Hickie, Ian Bernard Health Expect Original Articles BACKGROUND: Despite increasing support for stakeholder inclusion in research, there is limited evaluative research to guide safe (i.e., youth‐friendly) and meaningful (i.e., non‐tokenistic) partnerships with young people with lived experience of mental ill‐health in research. This paper describes a pilot evaluation and iterative design of a Youth Lived Experience Working Group (LEWG) protocol that was established by the Youth Mental Health and Technology team at The University of Sydney's Brain and Mind Centre, based on the results of two studies. METHODS: Study one consisted of a pilot evaluation of the extent to which youth partners felt empowered to contribute, to qualitatively explore how LEWG processes could be improved. Youth partners completed online surveys, and results were shared over two LEWG meetings in 2021 to empower youth partners to collectively identify actions of positive change regarding LEWG processes. These meetings were audio‐recorded and transcripts were subsequently coded using thematic analysis. Study two assessed whether LEWG processes and proposed improvements were acceptable and feasible from the perspective of academic researchers via an online survey in 2022. RESULTS: Quantitative and qualitative data collected from nine youth partners and 42 academic researchers uncovered initial learnings regarding facilitators, motivators, and barriers to partnering with young people with lived experience in research. Implementing clear processes for youth partners and academic researchers on effective partnership strategies, providing training opportunities for youth partners to develop research skills, and providing regular updates on how youth partner contributions led to research outcomes were identified as key facilitators. CONCLUSIONS: This pilot study provides insight into a growing international field on how to optimise participatory processes so that researchers and young people with lived experience can be better supported and engaged to make meaningful contributions to mental health research. We argue that more transparency is needed around participatory research processes so that partnerships with young people with lived experience are not merely tokenistic. CONSUMER CONTRIBUTIONS: Our study has also been approved by and reflects the concepts and priorities of our youth lived experience partners and lived experience researchers, all of whom are authors of this paper. John Wiley and Sons Inc. 2023-05-17 /pmc/articles/PMC10349217/ /pubmed/37195575 http://dx.doi.org/10.1111/hex.13777 Text en © 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd. https://creativecommons.org/licenses/by/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited. |
spellingShingle | Original Articles Lee, Grace Yeeun McKenna, Sarah Song, Yun Ju C. Hutcheon, Alexis Hockey, Samuel J. Laidler, Rachael Occhipinti, Jo‐An Perry, Claudia Lindsay‐Smith, Tara Ramsay, Annabel Choi, Skye Feirer, Dakota Shim, Andrew W. Cottle, Jessica Mukherjee, Anith New, Joshua Yu, Rebecca Scott, Elizabeth Mary Freebairn, Louise Hickie, Ian Bernard Strengthening mental health research outcomes through genuine partnerships with young people with lived or living experience: A pilot evaluation study |
title | Strengthening mental health research outcomes through genuine partnerships with young people with lived or living experience: A pilot evaluation study |
title_full | Strengthening mental health research outcomes through genuine partnerships with young people with lived or living experience: A pilot evaluation study |
title_fullStr | Strengthening mental health research outcomes through genuine partnerships with young people with lived or living experience: A pilot evaluation study |
title_full_unstemmed | Strengthening mental health research outcomes through genuine partnerships with young people with lived or living experience: A pilot evaluation study |
title_short | Strengthening mental health research outcomes through genuine partnerships with young people with lived or living experience: A pilot evaluation study |
title_sort | strengthening mental health research outcomes through genuine partnerships with young people with lived or living experience: a pilot evaluation study |
topic | Original Articles |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10349217/ https://www.ncbi.nlm.nih.gov/pubmed/37195575 http://dx.doi.org/10.1111/hex.13777 |
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