Summary: This project documents the service outcomes that caregivers value most. A diverse group of caregivers, representing six regions of the United States, participated in two rounds of virtual one-hour focus groups. In round 1, participants identified what they hoped to gain from using behavioral health services for themselves, their families, and their child and discussed what made services a positive experience for them. They then reported their top-three most-hoped-for outcomes. In round 2, groups validated and refined summary findings from round 1. Caregivers prioritized service quality outcomes, primarily. They expressed a desire for an accessible, respectful, and supportive treatment environment, underpinned by well-trained and culturally responsive professionals. Caregivers also desire seamless cross-sector provider collaboration and care transitions, which integrate the insights and preferences of families and children themselves to craft a customized care plan. Priority outcomes not related to service quality included hoping to gain increased knowledge, resources, and tools and techniques to support the mental health needs of their children, to see their children improve their daily functioning and for their child develop more effective interpersonal communication skills. Caregivers also reported hoping to experience less stigma related to the mental health needs of their children and to achieve personal fulfillment for themselves and their children. Research, policies, and mental health services should prioritize and be designed to address the outcomes that matter to youth and families.
Application: The lack of comprehensive data underscores the necessity to broaden our understanding of service effectiveness from the viewpoint of those directly impacted by these services. To address this need, this study draws on community-based samples of youth and young adults (YYA) and caregivers from six communities across the United States to broadly understand what outcomes matter most to the YYAs and caregivers who engage in child and youth mental health services. A secondary aim of this study was to uncover the values and beliefs underlying caregiver outcome priorities. While the overarching study examined these aims for both YYAs and caregivers, the complexity and breadth of the findings necessitated separate reports. We present the results pertinent to caregivers in this paper.
