PRP109: Improving transitions to adult healthcare for youth/young adults with complex care needs (CCN) and their families

Lillian MacNeill, PhD, BA, MA; Shelley Doucet, PhD, RN; Alison Luke, PhD


Context: 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. Objective: 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. Study Design: This needs-assessment uses a mixed-methods, cross-sectional design to collect data through self-report surveys and semi-structured interviews. Setting: The survey is being distributed using an online platform, and individual interviews are being conducted via telephone. All participants reside in New Brunswick, Canada. Population Studied: Approximately 100 participants will be recruited for the online survey, while approximately 30 youth/young adults, 30 caregivers, and 30 care providers will be recruited separately for interviews. Participants must be either youth/young adults between the ages of 16 and 30 years who present with CCN and are planning/experiencing/completing a transition from pediatric to adult services; their caregivers; or their care providers. Outcome Measures: 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. Results: 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. Conclusions: 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 improve
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Catherine Hudon 11/21/2020

Very relevant! Thanks ++

Shelley Doucet 11/25/2020

Thank you Catherine!! :)

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