Background: Transition from the pediatric to adult health care system is a multi-faceted process that should include medical and psychosocial considerations. Despite the importance of ensuring successful transition and independence in the community, and the significant detrimental health outcomes related to poor transition, there has been limited implementation of effective transitional care interventions for youth with neurodevelopmental disabilities. Importantly, research has also indicated the need for transition preparation as early as 12 years of age to promote gradual self-management and enable empowerment throughout the transition process.
Aims: Thus, the overall aim of this research is to develop an online, peer navigation intervention to assist and prepare youth (i.e., ages 12-17) with neurodevelopmental disabilities, including cerebral palsy and childhood onset acquired brain injury, in their transition to the adult health care system from the perspective of youth and their family members. Methods: We will adopt a co-design and development approach, incorporating qualitative research methods. Specifically, Phase 1 will adopt a qualitative descriptive approach using semi-structured interviews with youth and their family members to understand how peer navigation could facilitate transition to the adult health care system for youth with neurodevelopmental disabilities. Using the results of Phase 1, existing components of NexJ Connected Wellness Platform will be prioritized (e.g., health library, goal setting, motivational messaging, video chat, and gamification). Prototype development and refinement will occur over a series of focus groups/working group sessions with the youth and their family members. Thematic analysis will be used for the data derived from Phases 1 and 2.
Relevance and Impact: This foundational research will lead to the development and implementation of an evidence-based, patient- and family-informed online peer navigation intervention. This intervention holds the potential to improve knowledge, self-efficacy, and preparation/readiness for accessing and using appropriate health services for youth with neurodevelopmental disabilities and their family members (i.e., parents/caregivers). The proposed research aligns with the Kids Brain Health Network (KBHN) priority thematic areas of “evidence-based interventions and treatment” and “family support”.