“I Have Eight Different Files at Eight Different Places”: Perspectives of Youths and Their Family Caregivers on Transitioning from Pediatric to Adult Rehabilitation and Community Services

Abstract

Introduction: The number of young adults (youth) living with childhood-onset disabilities, and requiring transitional support to adult community and rehabilitation services, is increasing. We explored facilitators and barriers to accessing and sustaining community and rehabilitation services during the transition from pediatric to adult care. Methods: A qualitative descriptive study was conducted in Ontario, Canada. Data were collected through interviews with youth (n = 11) and family caregivers (n = 7). The data were coded and analyzed using thematic analysis. Results: Youth and caregivers face many types of transitions from pediatric to adult community and rehabilitation services, e.g., those related to education, living arrangements, and employment. This transition is marked by feelings of isolation. Supportive social networks, continuity of care (i.e., same care providers), and advocacy all contribute to positive experiences. Lack of knowledge about resources, changing parental involvement without preparation, and a lack of system responses to evolving needs were barriers to positive transitions. Financial circumstances were described as either a barrier or facilitator to service access. Conclusions: This study demonstrated that continuity of care, support from providers, and social networks all contribute markedly to the positive experience of transitioning from pediatric to adult services for individuals with childhood-onset disabilities and family caregivers. Future transitional interventions should incorporate these considerations.

Young adults' perception of transition from paediatric to adult care

“…During the transition, this collaboration ended, and for AYAs with multiple conditions and disabilities, healthcare transitions were held separately from each other instead of as one synchronised process. 37 Several participants described mistrust among the adult HCPs' competence. This was based on the experiences that the contact with healthcare services and previously made decisions regarding medications and treatments were questioned by the HCPs.…”

“…In paediatric healthcare, clinics and HCPs often collaborate closely with the patient in focus. During the transition, this collaboration ended, and for AYAs with multiple conditions and disabilities, healthcare transitions were held separately from each other instead of as one synchronised process 37 …”