Experiences of young adults with cerebral palsy in pediatric care transitioning to adult care.

Abstract

To increase understanding regarding the experiences and values of young adults with cerebral palsy (CP), and their caregivers, regarding pediatric rehabilitation-related care, including perceived barriers and potential facilitators to transition to adult care. This was a qualitative descriptive study that used 20 semi-structured interviews (13 caregivers and seven patient-caregiver dyads). We identified four major themes: (1) the value and security of long-term relationships; (2) feeling 'rudderless' navigating the logistics of transition; (3) differences in pediatric versus adult models of care; and (4) perceived lack of provider expertise and comfort in adult care settings. Young adults with CP who had not yet transitioned to adult rehabilitation care and their caregivers placed high value on provider relationships and expertise, advanced planning, communication, and coordination of care. Identified barriers and potential facilitators to the transition to adult rehabilitation care reflected the uncertainty that accompanies leaving an established healthcare relationship. Challenges related to the logistics of this transition, differences in models of care, and perceived lack of provider comfort and expertise in adult care settings were also noted. Our findings could be used to develop and study patient-centered and family-centered transition processes for individuals with CP to promote age-appropriate and developmentally appropriate lifespan care.