Grant: Doctoral Research Award: Canada Graduate Scholarships

About 4,400 children in Canada are born with a heart defect called congenital heart disease (CHD) each year. Although over 90% of these children now live to adulthood, they need more health services and face more challenges than those without CHD. The transition from pediatric-to-adult healthcare is a big challenge for youth with CHD (YCHD) aged 16 to 25. During this time, YCHD must navigate new healthcare settings and take more responsibility for managing their health. Without support, over half of YCHD may experience gaps in their adult care, putting them at risk for poor health outcomes. Currently, we do not know what the best transition care supports for YCHD are and how they should be provided. Research is needed to fill these gaps. My research will follow the Intervention Mapping framework to learn which supports should be used in a new pediatric-to-adult transition care program from the perspectives of YCHD, care partners (family and friends), and healthcare providers. In Study 1, I will identify the health and quality-of-life priorities of YCHD and care partners in the transition care period using a creative method called body mapping and a review of research on their priorities. In Study 2, I will collaborate with YCHD and care partners on a second research review identifying evidence-based strategies that can help achieve their health and quality of life priorities. In Study 3, YCHD, care partners, and healthcare providers will determine which strategies from Study 2 are the most preferred by patients and the most practical to deliver in the healthcare system. Balancing patient and care partner preferences with practical limitations, I will outline a transition care program that draws from research to support YCHD and their care partners through the transition care period. Future work will continue co-building this program in partnership with YCHD and their care partners, creating a product ready for testing and future implementation across Canada.