Adapting a codesign process with young people to prioritize outcomes for a systematic review of interventions to prevent self-harm and suicide
Open accessAbstract
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. PATIENT OR PUBLIC CONTRIBUTION: Young people with lived experience were codesigners of the outcomes, and their feedback informed iterative changes to the study methods.
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Young people identified a range of coping skills and a safe environment as important in recovery/recovering from self-harm (Knowles 2022).
“For the purpose of this review, young people identified a range of coping skills and a safe environment as important in recovery/recovering from self-harm (Knowles 2022).”
From Prevention of self-harm and suicide in young people up to the age of 25 in education settings (2024) · cites this paper as Knowles 2022
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- Authors
- Knowles, S., Sharma, V., Fortune, S., Wadman, R., Churchill, R., & Hetrick, S.
- Affiliations
- University of York (GB)
- University of Auckland (NZ)
- Corresponding author
- Knowles, Sarah
- Venue
- Health Expectations
- Publisher
- Wiley
- Published
- 2022-05-06
- Volume
- 25
- Issue
- 4
- Pages
- 1393-1404
- ISSN
- 1369-6513 (ISSN-L)
- 1369-7625
- PMC
- PMC9327872
- OpenAlex
- W4229002032
- Cited by
- 49
- References
- 40
- Citations by year
- 2026: 9 · 2025: 12 · 2024: 18 · 2023: 7 · 2022: 3
- FWCI
- 1.93
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- Health Expectations (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- White Rose Research Online (University of Leeds, The University of Sheffield, University of York) (submittedVersion)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Minerva Access (University of Melbourne) (submittedVersion, cc-by)
- ResearchSpace (University of Auckland) (submittedVersion, cc-by)
- Topics
- Health Sciences › Health Professions › General Health Professions › Mental Health and Patient Involvement
- Social Sciences › Sociology and Political Science › Delphi Technique in Research
- Social Sciences › Psychology › Clinical Psychology › Suicide and Self-Harm Studies
- Keywords
- co-design, youth, self-harm prevention, suicide prevention, outcome prioritization, lived experience, participatory research, coping, disclosure, stigma, personas, outcome measurement
- MeSH terms
- Suicide Prevention, Adolescent, United Kingdom, Health Priorities, Humans, New Zealand, Patient Participation, Self-Injurious Behavior, Program Development, Treatment Outcome
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