“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.

Experiences of patients with anorexia nervosa during the transition from child and adolescent mental health services to adult mental health services

“…The participants viewed their developmental stage as more important for a successful transition than age. This is in line with findings of other studies conducted on transitions between CAMHS and AMHS [9,17,31] and in contrast to the clinical guidelines that guide therapists to collaborate with patients and relatives to find the optimal time for the transition [37]. The present study describes how the participants felt as though they were treated more as a patient than an individual when not included in the decisions made about their transition.…”

“…As in our study, Cleverley, Lenters [31] underlined how the participants already are in a stressful situation and in need of a more individually adapted transition. Many participants thought that the transition would be better in the early 20s, when their lives were more stable.…”

“…Good preparation was followed by less stress and fewer feelings of uncertainty. Exploring the transition from the perspectives of 21 participants treated by the mental health services, Cleverley, Lenters [ 31 ] described the transition as “objectively terrifying” and the lack of preparation as “overwhelmingly present.” In the current study, it is unclear whether the experienced cultural and philosophical differences in approaches, was uncommunicated or not understood by the participants. Nonetheless, Winston, Paul [ 16 ] underlined the importance of discussing the differences between the services explicitly, with both the participants and their families.…”

Mixed-methods study protocol for an evaluation of the mental health transition navigator model in child and adolescent mental health services: the Navigator Evaluation Advancing Transitions (NEAT) study

“…[1][2][3][4][5][6][7][8] Youth and their caregivers often experience the transition from child and adolescent mental health services (CAMHS) to community or adult mental health services (AMHS) negatively, 9 10 specifically having a lack of information about post-CAMHS transition mental healthcare, being left out of the transition discussions, and not feeling prepared for the transition. 11 It is not surprising then that up to 60% of youth get disconnected from mental healthcare during this transition, leading to avoidable negative…”

“… 1–8 Youth and their caregivers often experience the transition from child and adolescent mental health services (CAMHS) to community or adult mental health services (AMHS) negatively, 9 10 specifically having a lack of information about post-CAMHS transition mental healthcare, being left out of the transition discussions, and not feeling prepared for the transition. 11 It is not surprising then that up to 60% of youth get disconnected from mental healthcare during this transition, leading to avoidable negative mental health and social outcomes, wasted healthcare resources and unnecessary cost expenditures. 3 5 12 These experiences have led policy-makers, administrators and other key stakeholders, including youth and their caregivers, to demand interventions to support more effective transitions.…”