Exploring the Expectations, Experiences, and the Role of Compassionate Virtual Peer Navigation for Pre-Transition Youth with Childhood-Onset Disabilities (Preprint)

BACKGROUND As a result of advances in pediatric medicine, more youth with conditions such as autism spectrum disorder (ASD), cerebral palsy (CP), and acquired brain injury (ABI) are surviving and living longer, leading to an increase in the number of youth living with childhood-onset disabilities. This trend has created an urgent need to consider approaches to support effective transitional care for individuals with lifelong disabilities. To date, few studies have directly engaged pre-transition youth and families to explore their transition experiences and expectations for the transition from pediatric to adult healthcare. Even fewer have looked at how compassion can be integrated into transition strategies, such as virtual peer navigation programs. OBJECTIVE This study aimed to explore: (i) the expectations for the transition from pediatric to adult healthcare, (ii) the experiences with transition planning and opportunities for embedding compassion; and (iii) perceptions of how virtual peer navigation could support compassionate transitions from the pediatric to the adult healthcare system, from the perspective of pre-transition youth diagnosed with ASD, CP and childhood-onset ABI, family caregivers and healthcare providers. METHODS A qualitative descriptive design was used. Twenty-six semi-structured interviews were conducted with pre-transition youth (aged 12 to 17) with ABI, ASD or CP (n=6), parents of youth diagnosed with ABI, ASD or CP (n=9) and healthcare providers (n=11). Interview data were coded and analyzed using reflexive thematic analysis. RESULTS Through semi-structured interviews, five themes were constructed. Parents described the transition from pediatric to adult healthcare as an overwhelming emotional process, expressing anxiety both over navigating an unfamiliar healthcare system and the implications of losing long-term relationships with trusted healthcare providers. Many families found themselves abruptly cut off from their longstanding care teams with no formal handover process in place to guide them. Further, as youth began to transition out of pediatric care, families faced unexpected out-of-pocket costs for therapies, equipment, and specialized support. Participants endorsed developing a virtual peer navigation program to address transition challenges, citing its potential to facilitate a smoother transition to adulthood. Study participants viewed virtual peer navigation as an opportunity to deliver tailored information and provide compassionate support from peers with lived experience. CONCLUSIONS Pre-transition youth with childhood-onset disabilities and parents expressed a strong interest in using a virtual peer navigation program and recognized its potential benefits in easing the transition to adulthood. The results of this study also highlight the mitigating role of compassion during the transition to adulthood and how virtual peer navigation can support compassionate transitions from pediatric to adult healthcare systems. Future work should focus on developing and evaluating training protocols and matching strategies for peer navigators, as well as assessing how virtual peer navigation programs can be integrated into formal care pathways to promote equitable and compassionate transitions.