Background: Involvement of end users in the production of reviews has mostly been limited to consultative review of researcher-authored protocols with involvement in outcome identification far less common. To address this gap, for a recent Cochrane review on suicide and self-harm prevention interventions in education settings, we collaborated with young people (YP) to co-design review outcomes that were relevant to them.
Objectives: The key objectives were to understand how our co-designed outcomes compared to outcomes that are usually included in self-harm intervention trials and the extent to which YP have been involved in the design and conduct of the trials included in the review.
Methods: Five participatory co-design workshops were completed with 32 YP, to co-design outcomes and reflect on how these outcomes compared to those measured in self-harm intervention and prevention interventions. The co-designed outcomes included in the review were better or more coping skills and safer environments (i.e. more acceptance and understanding at home/school). We did not further refine these into more narrowly defined outcomes through the researcher/clinician lens but took a scoping approach and included all constructs relevant to them.
Results: YP offered notably different views about what the most important review outcomes should be, emphasizing the broad diversity of experience and recovery. Importantly, the outcomes that they co-designed highlighted significant idiosyncrasy in what YP perceive as helpful and pointed to important targets of intervention. They also highlighted the importance of moving away from clinical, deficit-based and individually focused outcomes to more holistic and strengths-based outcomes. In the 51 trials included in the review, a large range of constructs relevant to the co-designed outcomes were used. However, very few trials measured the impact of improvements in these constructs on self-harm. Involvement of YP in designing these trials varied significantly but was very limited in most studies. Conclusion: The findings clearly elucidate the lack of alignment between what recovery from self-harm means (in terms of outcomes) for young people between YPs and researchers. Thus, involvement of YP in the ‘upstream’ stage of research is essential to ensure that review outcomes measure what is actually relevant to them.