Caregiver Experiences and Resource Gaps Following Pediatric Traumatic Brain Injury: A Qualitative Analysis

Abstract

This qualitative study explored caregivers’ experiences navigating their child’s recovery following pediatric traumatic brain injury (TBI) and identified barriers and facilitators to accessing healthcare, educational, and community resources after hospital discharge. Semi-structured virtual interviews were conducted with caregivers of children with a history of TBI from Ohio and other U.S. states. Interviews were transcribed verbatim and analyzed using thematic analysis. Among the 13 caregivers, 69% were female, and 92% were White. Three themes emerged: (1) caregivers as primary navigators of fragmented systems; (2) the impact of recovery on family life and well-being; and (3) the need for personalized, longitudinal support throughout recovery. Caregivers described assuming primary responsibility for coordinating services across healthcare, rehabilitation, insurance, education, and community systems with limited guidance during care transitions. They also reported emotional exhaustion, social isolation, financial strain, and the ongoing demands of advocating for their children’s changing needs. Although supportive clinicians, care coordinators, and community organizations facilitated recovery, families continued to face challenges accessing information, coordinating services, and navigating available resources. Findings underscore the need for longitudinal, family-centered models of care that extend beyond current standards. Centralized, technology-enabled navigation may reduce caregiver burden by improving information access, care coordination, and personalized support throughout recovery.