Transition us together: development of a parent-centered toolkit to support adolescents with rheumatic disease transition to adult care

Abstract

Objectives: While the transition period can be a difficult time for adolescents with chronic health conditions, parents also face challenges in understanding their changing role and how to support their children. To date, minimal interventions have focused on supporting and empowering parents during this period. Methods: We co-created a toolkit with and for parents to help prepare them for their child's transition to adult care. The toolkit was created using an iterative process of reviewing existing resources with integrating feedback from rheumatology patients and parents. Input was sought from the Family and Youth Advisory Councils at McMaster Children's Hospital in Hamilton, Canada. Results: The two components of the toolkit include a Transition Road Map and a Parent Guide to Transition. Five domains of transition readiness were established as pillars of the Road Map. Within each domain, a checklist to achieve self-management was established. The Parent Guide was developed to highlight important information including defining transition, outlining differences between pediatric and adult care, and providing tips on helping and supporting adolescents. Conclusions: A Parent Toolkit directed at the Transition from Pediatric to Adult Rheumatology Care was developed and underwent extensive review with multiple stake-holders. Ongoing research on its impact on transition readiness is underway.