Improving transitions from pediatric to adult healthcare for youth/young adults with complex care needs and their families
Care providers across settings and sectors are often ill-equipped for the successful transition of youth/young adults with complex care needs (CCN) from pediatric to adult healthcare across North America. These are the 15-18% of pediatric patients who are the highest volume users of health, social, and educational care systems, and who often experience discontinuity during transitions in care. This study explores the experiences and needs of these youth/young adults with CCN, their caregivers, and care providers prior to, during, and after transitions from pediatric to adult healthcare in an Atlantic Canadian province. This needs-assessment uses a mixed-methods, cross-sectional design to collect data through self-report surveys and semi-structured interviews. The survey will produce demographic data, as well as data from open-ended questions exploring the service needs of youth/young adults with CCN, through the lens of the patient, caregiver, and care provider. Interview data will provide in-depth information on the experiences and diverse needs of these individuals during the transition process. Data collection is scheduled to close in September 2020.
Findings will provide local organizations with tools to better facilitate convenient and integrated care; provide information on what interventions, programs, and policies could support transitions in care; and provide future direction to improve services through a transition strategy for youth/young adults with CCN. This project will build on existing partnerships among various stakeholders, including youth/young adults with CCN and their families that will yield family-centered integrated healthcare approaches in New Brunswick, thus leading to measurable economic and social impact through service and policy improvements. I am the Nominated-Principal Investigator of this one-year study funded by the New Brunswick Innovation Foundation (NBIF) ($35,000).