723 - Caregiver Experiences After Pediatric TBI: Insights on Confidence and Quality of Life

Objectives: Caregivers of individuals with traumatic brain injury (TBI) face the complex challenge of navigating shifting responsibilities and emotional demands as they support the patient through recovery. Numerous studies have documented physical, emotional, and practical implications of the caregiver role, including impact on health-related quality of life. While most research focuses on adult TBI, pediatric-onset TBI is less studied. This study explored the experiences of caregivers supporting children with TBI, using focus groups and surveys to examine caregiver confidence, support, and quality of life. 

Design: Focus groups were conducted with caregivers of children with TBI (6+ months post-injury). A study-specific survey was developed using cognitive debriefing and Patient-Reported Outcomes Measurement Information System (PROMIS) CareQOL subscales (caregiver strain, feeling trapped, and emotional suppression), administered using RedCap. Thematic analysis and descriptives were used to analyze qualitative and quantitative data, respectively.  

Results: Focus groups included 22 caregivers, identifying three key themes: burden of lone caregiving, understanding individual needs, and trust. Forty-three caregivers completed the survey. Reported levels of caregiver strain, feeling trapped, and emotional suppression were similar to those seen in adult TBI caregiving. Over 60% had experienced times when they lacked confidence in others’ care for their child. About 11.7% felt “not at all” or “only slightly” confident in current caregiving support, and 9.3% had no additional caregivers. Only 27.9% felt very confident in others’ care. Many caregivers reported being moderately (27.9%) or extremely (37.2%) worried about safety with less familiar caregivers. Perceived support showed a bimodal distribution: 30.2% reported very little support, another 30.2% felt well supported.

Conclusions: Caregivers experience feelings of strain, feeling trapped, and emotional suppression after pediatric TBI. Trust and understanding of the child’s needs are key to ensuring caregivers are not alone in supporting a child after TBI. Future research is needed to develop tools and interventions to facilitate shared caregiving.