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      Youth engagement in mental health research: A systematic review

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          Abstract

          Introduction

          Patient engagement in youth mental health research has the potential to inform research on the interventions, services and policies that will benefit youth. At present, there is little evidence to guide mental health researchers on youth engagement. This systematic review aims to describe the impacts of youth engagement on mental health research and to summarize youth engagement in mental health research.

          Methods

          We searched the following databases: MEDLINE, EMBASE and PsycINFO, using a combination of subject headings, keywords and synonyms for the concepts ‘patient engagement’, ‘youth’ and ‘mental health’. Articles that described engaging youth in mental health research were included. Two reviewers performed the study selection. Study characteristics, research activities performed by youth, impacts of youth engagement, challenges, and facilitators to engagement and recommendations for youth engagement described by authors were extracted. Quality appraisal involved determining the level of engagement of youth and the stage(s) of research where youth were involved.

          Results

          The database search returned 2836 citations, 151 full‐text articles were screened and 16 articles, representing 14 studies, were selected for inclusion. Youth were involved at nearly all stages of the research cycle, in either advisory or co‐production roles. Youth engagement impacts included enhancing relevant research findings, data collection and analysis and dissemination to academic and stakeholder audiences. Both youth and academic researchers reported personal development across many domains. One negative impact reported was the increase in funding and resources needed for engagement. We produced a list of 35 recommendations under the headings of training, youth researcher composition, strategy, expectations, relationships, meeting approaches and engagement conditions.

          Conclusions

          This study provides an understanding of the impacts and recommendations of youth engagement in mental health research. The findings from this study may encourage researchers to engage youth in their mental health research and support youth engagement in funding applications.

          Patient and Public Contribution

          We consulted three youths with experience being engaged in mental health research about the review findings and the discussion. One youth designed a visual representation of the results and provided feedback on the manuscript. All youth's input informed the way the findings were presented and the focus of the discussion.

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          Most cited references47

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          The PRISMA 2020 statement: an updated guideline for reporting systematic reviews

          The Preferred Reporting Items for Systematic reviews and Meta-Analyses (PRISMA) statement, published in 2009, was designed to help systematic reviewers transparently report why the review was done, what the authors did, and what they found. Over the past decade, advances in systematic review methodology and terminology have necessitated an update to the guideline. The PRISMA 2020 statement replaces the 2009 statement and includes new reporting guidance that reflects advances in methods to identify, select, appraise, and synthesise studies. The structure and presentation of the items have been modified to facilitate implementation. In this article, we present the PRISMA 2020 27-item checklist, an expanded checklist that details reporting recommendations for each item, the PRISMA 2020 abstract checklist, and the revised flow diagrams for original and updated reviews.
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            JBI Manual for Evidence Synthesis

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              Patient engagement in research: a systematic review

              Background A compelling ethical rationale supports patient engagement in healthcare research. It is also assumed that patient engagement will lead to research findings that are more pertinent to patients’ concerns and dilemmas. However; it is unclear how to best conduct this process. In this systematic review we aimed to answer 4 key questions: what are the best ways to identify patient representatives? How to engage them in designing and conducting research? What are the observed benefits of patient engagement? What are the harms and barriers of patient engagement? Methods We searched MEDLINE, EMBASE, PsycInfo, Cochrane, EBSCO, CINAHL, SCOPUS, Web of Science, Business Search Premier, Academic Search Premier and Google Scholar. Included studies were published in English, of any size or design that described engaging patients or their surrogates in research design. We conducted an environmental scan of the grey literature and consulted with experts and patients. Data were analyzed using a non-quantitative, meta-narrative approach. Results We included 142 studies that described a spectrum of engagement. In general, engagement was feasible in most settings and most commonly done in the beginning of research (agenda setting and protocol development) and less commonly during the execution and translation of research. We found no comparative analytic studies to recommend a particular method. Patient engagement increased study enrollment rates and aided researchers in securing funding, designing study protocols and choosing relevant outcomes. The most commonly cited challenges were related to logistics (extra time and funding needed for engagement) and to an overarching worry of a tokenistic engagement. Conclusions Patient engagement in healthcare research is likely feasible in many settings. However, this engagement comes at a cost and can become tokenistic. Research dedicated to identifying the best methods to achieve engagement is lacking and clearly needed.
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                Author and article information

                Contributors
                Role: Post‐doctoral Fellowerin.mccabe@ucalgary.ca
                Role: Research Assistant
                Role: Masters Student
                Role: Youth Researcher
                Role: Masters Student
                Role: Masters Student
                Role: Associate Professor
                Role: Associate Professor
                Journal
                Health Expect
                Health Expect
                10.1111/(ISSN)1369-7625
                HEX
                Health Expectations : An International Journal of Public Participation in Health Care and Health Policy
                John Wiley and Sons Inc. (Hoboken )
                1369-6513
                1369-7625
                16 November 2022
                February 2023
                : 26
                : 1 ( doiID: 10.1111/hex.v26.1 )
                : 30-50
                Affiliations
                [ 1 ] Department of Pediatrics, School of Public Policy University of Calgary Calgary Alberta Canada
                [ 2 ] Department of Medicine, School of Public Policy University of Calgary Calgary Alberta Canada
                [ 3 ] Department of Community Health Sciences University of Calgary Calgary Alberta Canada
                [ 4 ] Department of Biology, Faculty of Science and Technology Mount Royal University Calgary Alberta Canada
                [ 5 ] Department of Social Policy and Health, School of Public Policy University of Calgary Calgary Alberta Canada
                [ 6 ] Department of Pediatrics, Community Health Sciences University of Calgary Calgary Alberta Canada
                Author notes
                [*] [* ] Correspondence Erin McCabe, PhD, MScPT, Department of Pediatrics, School of Public Policy, University of Calgary, Calgary, AB, Canada. 

                Email: erin.mccabe@ 123456ucalgary.ca

                Author information
                https://orcid.org/0000-0003-3171-3065
                https://orcid.org/0000-0002-0202-5952
                Article
                HEX13650
                10.1111/hex.13650
                9854331
                36385452
                0de432f8-2886-4099-92ad-47f3fea9c8d6
                © 2022 The Authors. Health Expectations published by John Wiley & Sons Ltd.

                This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

                History
                : 21 October 2022
                : 29 July 2022
                : 22 October 2022
                Page count
                Figures: 2, Tables: 6, Pages: 21, Words: 10089
                Funding
                Funded by: Kids Brain Health Network
                Funded by: Canadian Institutes for Health Research
                Award ID: Tier II Canada Research Chair in Disability Policy
                Funded by: Alberta Children's Hospital Research Institute
                Categories
                Review Article
                Review Articles
                Custom metadata
                2.0
                February 2023
                Converter:WILEY_ML3GV2_TO_JATSPMC version:6.2.3 mode:remove_FC converted:20.01.2023

                Health & Social care
                co‐design,community‐based research,mental health,mental health services,patient and public involvement,patient engagement,youth engagement

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