"We Don't Know What to Do With an Adult" A Qualitative Study of Cerebral Palsy Transition Gaps

To increase our understanding of the transition experiences and care gaps of young adults with cerebral palsy (CP) who recently transitioned to adult-based care.

Qualitative descriptive study using semistructured interviews.

Adult-based CP specialty clinic.

Eligible adults with CP were between the ages of 18 and 40 years, English speaking, and seen in the adult CP clinic at least once. Caregivers were eligible if they were the primary support person for an adult with CP who met study criteria and were English speaking. Participants were purposefully sampled to promote diversity of demographic background and level of functional mobility. The total number of participants in our study was N=27.

Not applicable.

Themes associated with participants' transition and care gap experiences.

Of the 21 interviews completed, there were 7 adult with CP interviews, 9 caregiver interviews (1 with 2 caregivers), and 5 dyadic interviews with both adult with CP and caregiver (27 participants total). Adults with CP who participated or were represented by their caregiver(s) (N=21) ranged between 20 and 37 years old with relatively equal men and women, as well as functional level, representation. This included 6 participants who identified as non-White (29%), 5 who identified as Hispanic (24%), and 2 from rural communities (10%). We identified 4 major themes related to transition and care gap experiences (1) the value of transition preparation and discussion; (2) the need for supportive, coordinated care; (3) struggling through gaps in care during the transition; and (4) the importance of and challenges to ensuring lifespan care.

Young adults with CP face complex challenges in the transition to adulthood, including inadequate preparation and a lack of adult-based services to meet their needs. Adults with CP who have successfully established adult-based CP care and their caregivers value support in transferring to adult care and access to CP-specific care throughout the lifespan.