No evidence synthesis about me without me: Involving young people in the conduct and dissemination of a complex evidence synthesis

Walker, Erin; Shaw, Elizabeth; Nunns, Michael; Moore, Darren; Thompson-Coon, Jo

doi:10.1111/hex.13078

Cited by 12 publications

(68 citation statements)

References 10 publications

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“…Alternatives include more dialogue‐based approaches 27 or participatory codesign methods 28 . Facilitated discussions with interactive activities may be particularly suitable for working with young people 29 …”

Section: Introductionmentioning

confidence: 99%

“…28 Facilitated discussions with interactive activities may be particularly suitable for working with young people. 29 …”

Section: Introductionmentioning

confidence: 99%

“…28 Facilitated discussions with interactive activities may be particularly suitable for working with young people. 29 To inform the systematic review of suicide and self-harm prevention interventions in education settings, we aimed to work with young people to collaboratively prioritize review outcomes. We adopted an iterative approach to eliciting and exploring outcomes with young people, to enable adaptation of our methodology in response to challenges encountered.…”

Section: Introductionmentioning

confidence: 99%

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Adapting a codesign process with young people to prioritize outcomes for a systematic review of interventions to prevent self‐harm and suicide

Knowles

Sharma

Fortune

et al. 2022

Health Expectations

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Background: Research and clinical outcomes that matter to people with lived experience can significantly differ from those outcomes studied by researchers. To inform a future Cochrane review of suicide and self-harm prevention interventions, we aimed to work with young people with relevant lived experience to agree on priority outcomes.Design: Four participatory codesign workshops were completed across two sites (New Zealand, United Kingdom) with 28 young people in total. We iteratively adapted the methods over the course of the study.Results: 'Improved coping' and 'safer/more accepting environment to disclose' were the final top-rated outcomes. 'Reduction of self-harm' was considered a low priority as it could be misleading, stigmatizing and was considered a secondary consequence of other improvements. In contrast to typical research outcomes, young people emphasized the diversity of experience, the dynamic nature of improvement and holistic and asset-based framing. Methodologically, dialogue using design materials (personas) to thematically explore outcomes was effective in overcoming the initial challenge of disparate quantitative ratings.Discussion: The results will directly inform the development of a Cochrane review, enabling identification of whether and how outcomes of most importance to young people are measured in trials. Rather than producing discrete measurable outcomes that could be easily added to the systematic review, the young people challenged the academic conceptualization of outcomes, with implications for future evidence synthesis and intervention research, and for future codesign.

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Section: Introductionmentioning

confidence: 99%

“…28 Facilitated discussions with interactive activities may be particularly suitable for working with young people. 29 …”

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Adapting a codesign process with young people to prioritize outcomes for a systematic review of interventions to prevent self‐harm and suicide

Knowles

Sharma

Fortune

et al. 2022

Health Expectations

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“…No studies reported a formal impact assessment of youth engagement, although four studies explored the impacts and experiences of youth engagement in research. 15 , 28 , 36 , 37 Table 4 contains a list of the impacts of youth engagement.…”

Section: Resultsmentioning

confidence: 99%

Youth engagement in mental health research: A systematic review

McCabe

Amarbayan

Rabi

et al. 2022

Health Expectations

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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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“…Walker et al [91] Excluded Involvement of young people in research. Does not discuss higher-level involvement, including co-production.…”

Section: Simmons Et Al [80] Excludedmentioning

confidence: 99%

Co-Production within Child and Adolescent Mental Health: A Systematic Review

Norton

2021

IJERPH

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Background: Mental health services are currently experiencing much systemic and organisational change. Many countries have adopted a recovery approach to service provision through the development of national policies and frameworks. Within an Irish context, co-production has been identified as one of the four pillars required for services to become recovery orientated. However, there is a paucity of literature relating to the concept within child and adolescent mental health services. This paper aims to synthesise the peer-reviewed evidence on co-production within such services. Methods: A PRISMA compliant systematic review was undertaken. This includes how the reviewer retrieved, shortlisted, and selected studies for inclusion in the review. It outlines the inclusion/exclusion criteria and how these were further developed through the PICO framework. Finally, the methods also outline how the reviewer assessed bias and quality, as well as the process of data synthesis. Results: Two studies were included in this review, both focusing on co-production, but in different contexts within child and adolescent mental health. Two themes were identified: ‘road less travelled’ and ‘co-producing equality’. These themes and the associated sub-themes describe how co-production works in these services. Discussion: These results highlight the paucity of quality literature in co-production within child and adolescent mental health. Both studies scored poorly in terms of quality. Resulting from this review, a number of actions relating to the therapeutic environment need to be taken into account for co-production to be further implemented. Other: The reviewer has not received any funding for this paper. A protocol was not created or registered for this review.

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No evidence synthesis about me without me: Involving young people in the conduct and dissemination of a complex evidence synthesis

Abstract: This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

Cited by 12 publications

References 10 publications

Adapting a codesign process with young people to prioritize outcomes for a systematic review of interventions to prevent self‐harm and suicide

Adapting a codesign process with young people to prioritize outcomes for a systematic review of interventions to prevent self‐harm and suicide

Youth engagement in mental health research: A systematic review

Co-Production within Child and Adolescent Mental Health: A Systematic Review

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