Title: Exploring Caregiver Experiences with Navigating and Securing Residential Care for Children with Intensive Needs

Objectives: Residential Care (RC) is a vital intervention for children with high acuity needs who cannot be safely cared for in the home. Issues with accessing RC in the United States and internationally are longstanding due to complicated service systems, costs, and policies aimed at minimizing utilization. Limiting utilization and access to RC has consequences for families and children who require higher-level interventions resulting in prolonged stress and instability, heightened risk for victimization and trauma, and delayed treatment. Families of children with high acuity needs are amongst the most vulnerable yet, little effort has been made to understand their experiences with accessing RC services and the impacts of these lived experiences. Drawing upon an adaptation of Hainstock’s (2017) Caregiver Journey Framework, this study describes caregivers’ experiences with accessing RC for their children with high-acuity needs.

Method: Using a multiple case-study design, 30 caregivers shared their experiences with accessing RC for their children. Additionally, 30 service providers were interviewed to explore their experiences with helping caregivers access RC. Breaking the process into four phases, participants described 1) precursors to seeking RC and their experiences with 2) navigating the system 3) their child’s transition into RC, and 4) their preparation for their children’s discharge and post-discharge experiences.

Results: Results show a complicated, emotionally charged process for caregivers navigating the RC system. Several themes emerged: 1) Challenging Behaviors & Safety Concerns: Caregivers considered RC placement only after dealing with behaviors beyond their ability to manage for years—such as aggression, self-harm, and sexual misbehavior. These behaviors affected the child, stressed family dynamics, and raised concerns about family member’s safety and mental health. 2) Barriers to Accessing Services: Caregivers faced long waits and difficulty navigating systems with limited support. The scarcity of resources, lack of information, and stigma surrounding RC contributed to these challenges. 3) Eligibility and Systemic Limitations: Fixed eligibility criteria failed to account for the full spectrum of children’s needs, preventing those with more complex needs from accessing appropriate services. This highlighted the rigidity of the system, which does not allow for the flexibility that families need. 4) High Turnover and "Compassion Fatigue": Caregivers expressed frustration with case manager and staff turnover leading to a lack of continuity in care. 5) Inadequate Aftercare: The lack of reliable support for post-discharge planning perplexed caregivers. While some appreciated the involvement of service providers in preparing for discharge, most were left without follow-up services.

Conclusion: Findings suggest that most caregivers faced significant barriers securing necessary care for their children. System inefficiency, limited resources, and lack of support need to be addressed to improve services for these families. A primary outcome of this study is to give caregivers a voice in a process of critical importance to their families’ wellbeing and shed light on challenges and opportunities to support families seeking services.