Accessing primary health care services for transition-aged young adults with cerebral palsy; perspectives of young adults, parents, and physicians

Abstract Background Young adults with childhood-onset disabilities experience challenges with accessing age appropriate primary health care services as they transition from pediatric to adult health care services. They often experience a negative impact on their health with associated long-term health and social concerns, disease complications and increased use of emergency services once transitioned to adult services. This is particularly challenging for youth with cerebral palsy (CP) due the complexity of their medical needs. The aim of this study was to explore experiences with accessing or providing primary care services for transitioned-aged young adults with CP from young adult, parent, pediatrician and primary care physician perspectives. Methods A qualitative descriptive design was conducted to identify the challenges and facilitators for transitioned aged young adults with accessing primary, adult care services. Semi-structured interviews were conducted with 16 participants within the circle of care (4 adults with CP, 4 parents, 4 pediatricians and 4 primary healthcare physicians) for individuals with CP in Toronto, Canada. Interviews were audio-recorded and transcribed verbatim. Qualitative analysis guided both the data collection and the data analysis processes. Results Data analysis revealed that all participant groups reported transition challenges with respect to accessibility, the suitability of some primary care environments for caring for individuals with complex care needs, gaps in seamless care, and limited time and funding when receiving or providing primary care services to young adults with CP. Discussion There is a greater demand for adult healthcare providers now to deliver services for adults with childhood onset disabilities. Transition-aged young adults with CP and complex medical needs have increased challenges with accessing primary care services. Considering the following would improve primary care services transition for this population with complex medical needs: ongoing partnering between pediatric and adult health care streams to promote seamless care; connection to team-based primary care services where family physicians, subspecialties and interprofessional practitioners work together to provide joint care planning; salary compensation for increased service needs due to medical complexity; accessible sites; and development of guidelines for transitioning youth/young adults with complex care needs.