Improving the paediatric to adult care transition experience: Recommendations from young adults with complex care needs

Monique Cassidy (a), Dr. Shelley Doucet (b), Dr. Alison Luke (b), Alex Goudreau (c)
(a) Dept. Interdisciplinary Studies, University of New Brunswick
(b) Dept. of Nursing and Health Sciences, University of New Brunswick
(c) UNB Libraries, University of New Brunswick

​With advancements in modern medicine, an increasing number of youth with complex care needs (CCN) now survive into adulthood. As service demands increase for this group, challenges exist on how to best facilitate meeting their high resource needs. When transitions to adult care are uncoordinated, youth with complex care needs (e.g., youth with diabetes, autism, mental health conditions) may suffer poor outcomes (e.g., costly ER admissions). To date, studies exploring how to improve the transition to adult care are primarily from perspectives other than the youth/young adults themselves. The objective of this scoping review was to identify literature capturing recommendations on how to improve the transition from pediatric to adult care from the perspective of young adults who have completed this transition. JBI methodology for scoping reviews was followed. A comprehensive search strategy was developed by a JBI trained librarian. Two independent reviewers used inclusion criteria to screen title/abstracts and full-text article results, then extracted synthesized data. Upon consensus, improvement recommendations from the youth were categorized and analyzed into pertinent themes accompanied by narrative summary. Young adults expressed need for integrated and patient-centred care. Peer-mentorship opportunities and patient navigators were recommended throughout the transition process for achieving successful outcomes. The insights learned from this review can benefit service delivery by addressing important barriers to access in the realms of health, education, and social services for youth transitioning from pediatric to adult care, while providing hope for improved transition experiences for youth who have not yet transitioned.