What matters most to young people and families receiving mental health treatment? A co-design approach to inform outcomes in a randomised control trial of Tuning in to Teens

Abstract

Background

Co-design approaches with young people and their families with experience of poor mental health can be used to improve the alignment between clinical trials and real-world settings. This study used a co-design methodology to incorporate the priorities of young people (10–14 years) receiving treatment in mental health services and their parents into outcome measures for a feasibility randomised control trial (RCT) of a parent-focused intervention for youth anxiety and depression (Tuning in to Teens™).

Methods

A group of young people (10–14 years, n = 5) and a group of parents (n = 7) attending Child Adolescent Mental Health Services (CAMHS) in New Zealand participated in co-design workshops. In each group, participants identified a range of important outcomes in their care. Outcomes were ranked by participants with the top outcome for each group used to construct a measure for inclusion in the RCT.

Results

Parents and young people identified a range of important outcomes in their care including improvements in daily functioning, safety, and relationships. Parents identified ‘strengthened relationships’ as their top priority for intervention while young people chose ‘being listened to more’. Based on these priorities, trial outcome measures were co-created with participants. The relationship focused outcomes contrast with more widely used symptom-based outcome measures in RCTs.

Conclusions

Co-design can be used within traditional research design in youth mental health to increase alignment in outcomes for young people and their families. The approach described in this study has the potential to be adapted and expanded to other settings.