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

Abstract

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.

“We know that our voices are valued, and that people are actually going to listen”: co-producing an evaluation of a young people’s research advisory group

“…Skilled facilitation, and time and resources to do this well were identified as key to the success of the group. This echoes an emerging literature on the importance of facilitation in effective public involvement, including as a catalyst for discussion, reflection and relationship building [ 15 ] and in the process of providing feedback [ 17 ]. But investment in facilitation, as well as recognition of the skills and expertise involved, is also essential [ 37 ].…”

Who are we missing? Self‐selection bias in nonsuicidal self‐injury research

“…Participants also report experiencing both positive (e.g., self‐understanding, helping others, and interest) and negative (e.g., personal experiences, awareness of others' suffering) experiences taking part in mental health research (Hasking et al, 2015). These findings support recent calls for greater inclusion of people with NSSI lived experience in all aspects of the research process (Knowles et al, 2022; Lewis & Hasking, 2019).…”

A systematic review and meta‐ethnography to explore people's experiences of psychotherapy for self‐harm

“…Contrastingly, those who have participated in therapeutic interventions for self‐harm consistently report that reduction in frequency of typical self‐harming behaviours are alone, not enough to indicate improvement to their lives and mental well‐being (Owens et al, 2020). Likewise, research concerning client's treatment outcome priorities for self‐harm interventions found that reducing self‐harm was a lower priority compared to other outcomes such as establishing a safer or more accepting environment for disclosure (Knowles et al, 2022). This study found that when the therapy requires patients to confront or eradicate self‐harming behaviours before trust has been established, a conflict can occur within the therapeutic relationship that can lead patients to withhold information or disengage from the therapy.…”