Abstract
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 stakeholders. Ongoing research on its impact on transition readiness is underway.
Highlights
The management of pediatric chronic disease is complex due to the intricacies of treatment, the attention required for disease monitoring, and the interplay between physical health, psychosocial wellbeing, and developmental status
While the transition period can be a difficult time for adolescents with chronic health conditions, parents face challenges in understanding their changing role and how to support their children
After the initial design was completed, the Guide and Road Map were presented to the McMaster Children’s Hospital (MCH) Family Advisory Council (FAC) along with key members of hospital administration
Summary
The management of pediatric chronic disease is complex due to the intricacies of treatment, the attention required for disease monitoring, and the interplay between physical health, psychosocial wellbeing, and developmental status. These challenges are heightened as adolescents transition from child-centered to adult-oriented healthcare systems. This transition period is marked by higher symptom burden, morbidity and mortality, and poor medical adherence [1,2,3]. The transition period poses unique challenges to parents and caregivers ( referred to as “parents”), as they struggle to define new roles and responsibilities in their child’s care [5].
Sign-in/Register to view highlights & summary Sign-in/Register to access full text options 
Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
