"Brain Injuries Affect Everything:" Long-Term Caregiver Perspectives on Medical and Educational Needs Following Inpatient Rehabilitation for Pediatric TBI.

This qualitative study incorporates caregiver perspectives to identify their (1) experiences with medical and educational supports for their children with chronic TBI following inpatient rehabilitation and across the recovery trajectory and (2) recommendations to improve service provision for young people with TBI. Nineteen caregivers of children with complicated-mild-to-severe TBI participated in semi-structured virtual interviews. Participants were from a large Midwestern U.S. city. Researchers used reflexive thematic analysis, incorporating an experiential orientation and a deductive approach. Standards for Reporting Qualitative Research guided this process. Children were an average of 5.2 years post-injury, and age at injury ranged from 2.6 to 18.0 years, providing depth of caregiver experiences discussed in interviews. Four primary themes were identified: (1) TBI leads to lasting changes in the child, (2) the healthcare environment is overwhelming, (3) TBI forces a shift in caregiver responsibilities, and (4) school challenges persist over time. Caregivers generated concrete, experience-based recommendations, highlighting the need for increased support, resources, and education in specific areas following pediatric TBI. By centering caregiver voices across recovery, this study underscores their unique expertise in identifying system-level gaps and informing the development of interventions, services, and policies that better support children with TBI and their families over time.