Transition From Pediatric to Adult Services: Challenges for Family Caregivers of Young Adults With Traumatic Brain Injury

Abstract

Family caregivers are the main source of support for survivors of traumatic brain injury (TBI) while they transition from pediatric to adult care service and support systems. Yet there is little research that examines the needs of these caregivers during the transition phase. The aim of this qualitative phenomenological study was to examine the lived experiences of family caregivers of young adults with TBI who had recently transitioned from services for children and adolescents to adult care service and supports. The study sample comprised 15 family caregivers of young adult TBI survivors who had transitioned to adult services in the last 5 years. They were recruited from two large hospitals and a caregiver support center in a city in Western Canada. Semistructured interviews were conducted with the caregivers and the data were analyzed using Colaizzi’s approach in developing an essential structure of the phenomenon of caregiving. Fifteen themes emerged from the analysis and these are discussed under two broad domains: (a) caregivers’ experiences and challenges with their relative at the time of transition; (b) caregivers’ challenges with services and supports systems during transition. Findings suggest that there is a wide gap between what caregivers need and what is available to them to support their young adult relative through the transition process and beyond. Most caregivers reported that the transition phase is overwhelming and has a profound and pervasive impact on their lives. Implications of the findings and recommendations for policy and practice are discussed.