A qualitative study exploring youth's experiences of hospital- and integrated community-based mental health services: the YouthCan IMPACT initiative.

BACKGROUND: Approximately 20% of Canadian youth (12-25 years) experience mental health and substance use (MHSU) concerns, with the majority not receiving timely evidence-informed care. The YouthCan IMPACT study was a pragmatic randomized controlled trial (pRCT) of an integrated youth services model. The pRCT compared integrated collaborative care teams (the intervention) to youth outpatient hospital psychiatric services (the treatment as usual control). We embedded a qualitative study within the pRCT to explore youth's perceptions and experiences of the intervention and the control services. METHODS: Youth participants (14-17 years) were recruited to the study within an ongoing pRCT from hospitals. Youth were purposively sampled from the broader pRCT sample based on sex assigned at birth and pRCT arm (intervention or control group). To capture service experience across a range of follow-up intervals, youth were eligible to participate in the study if they had completed a six-month or a 12-month assessment within the pRCT. Semi-structured interviews were conducted with n = 44 youth between January 2018 and December 2019 (n = 22 intervention and n = 22 control participants). The interview focused on access; needs and preferences; decision-making; and satisfaction, among other domains. Two coders thematically analyzed the groups separately. Coding differences were resolved through discussion with the research team. RESULTS: Participants in both study arms articulated their service experiences around the themes of dignity, respect, and autonomy in care. Participants felt valued and respected when they receive tailored, consistent services; comprehensive information; were able to develop a supportive, collaborative relationship with the service provider; and used their voice in their care plan. They reported improved satisfaction, improvement in mental health status, and usefulness of services. Some youth within the hospital setting experienced services that were inappropriate, inefficient, and poorly coordinated. These experiences adversely affected youth's dignity, respect, and autonomy. CONCLUSIONS: This study is the first embedded qualitative study globally within a pRCT that explores experiences of an integrated collaborative care team model and standard hospital care. The study adds to the limited evidence base on dignity, respect, and autonomy within youth MHSU services. Determining how youth experience services in community-based and hospital settings is critical as it helps reduce treatment gaps. TRIAL REGISTRATION: Clinicaltrials.gov NCT02836080. Registration date 2016-07-14.