Co‐designing for quality: Creating a user‐driven tool to improve quality in youth mental health services

BACKGROUND: Although high quality mental health care for children and youth is a goal of many health systems, little is known about the dimensions of quality mental health care from users' perspectives. We engaged young people, caregivers and service providers to share experiences, which shed light on quality dimensions for youth mental health care. METHODS: Using experience-based co-design, we collected qualitative data from young people aged 16-24 with a mental disorder (n = 19), identified caregivers (n = 12) and service providers (n = 14) about their experiences with respect to youth mental health services. Experience data were collected using multiple approaches including interviews, a suite of online and smartphone applications (n = 22), and a co-design event (n = 16) and analysed to extract touch points. These touch points were used to prioritize and co-design a user-driven prototype of a questionnaire to provide feedback to service providers. FINDINGS: Young people, caregiver and service provider reports of service experiences were used to identify aspects of care quality at eight mental health service contact points: Access to mental health care; Transfer to/from hospital; Intake into hospital; Services provided; Assessment and treatment; Treatment environment; and Caregiver involvement in care. In some cases, low quality care was harmful to users and their caregivers. Young people co-designed a prototype of a user-driven feedback questionnaire to improve quality of service experiences that was supported by service providers and caregivers at the co-design event. CONCLUSION: By using EBCD to capture in-depth data regarding experiences of young people, their caregivers and service providers, study participants have begun to establish a baseline for acceptable quality of mental health care for young people.