"Objectively terrifying": a qualitative study of youth's experiences of transitions out of child and adolescent mental health services at age 18

Abstract

Background: Mental health issues presenting in childhood often persist into adulthood, usually requiring youth to transition from child and adolescent mental health services to adult mental health services at 18 years. Discontinuity of care during this transition period is well-documented and can leave youth vulnerable to adverse mental health outcomes. There is growing recognition of the need to improve transition-related care for youth leaving the child and adolescent mental health system. However, the perspectives and experiences of youth have not always been forefront in these discussions, and in particular, the perspectives of youth in the pre-transition period. This study qualitatively explores transition-related knowledge and experiences of youth both prior-to and after transition.

Methods: A purposive sample of youth aged 16-19 years was recruited from two child and adolescent mental health programs. Youth were enrolled as part of a longitudinal follow-up study and had the opportunity to opt into this study. Interviews were transcribed and coded using NVivo11 software. Main themes were distilled through descriptive analysis following the principles of directed content analysis. The study followed the principles of participatory action research, engaging youth with lived experience navigating transitions in each stage of the study.

Results: In-depth, semi-structured interviews were conducted with 14 pre-transition and 8 post-transition youth. All youth reported having either a mood and/or anxiety disorder for which the majority were receiving treatment at the time of the interview. The participants' experiences were distilled into six major themes. Youth advocated for being considered partners in transition planning and to have increased control over transition-related decisions. Youth also made specific recommendations on how to improve continuity of care during the transition process.

Conclusions: Transition planning should be individualized for each youth based on their developmental needs, transition readiness and ongoing mental health needs. Transition pathways, co-designed with youth and caregivers, should be developed to guide providers in transition best practices. Obtaining both the pre- and post-transition experiences of youth is crucial for developing a more complete of understanding of youth perspectives and implementing guidelines that improve transition quality and experiences.

Keywords: Child and adolescent psychiatry; Health transition; Mental health services; Participatory research; Thematic analysis; Transition to adult care.