Programmes to support paediatric to adult healthcare transitions for youth with complex care needs and their families: A scoping review

  • Shelley Doucet
    Centre for Research in Integrated Care University of New Brunswick Saint John New Brunswick Canada
  • Jennifer Splane
    Centre for Research in Integrated Care University of New Brunswick Saint John New Brunswick Canada
  • Alison Luke
    Centre for Research in Integrated Care University of New Brunswick Saint John New Brunswick Canada
  • Kathryn E. Asher
    Centre for Research in Integrated Care University of New Brunswick Saint John New Brunswick Canada
  • Sydney Breneol
    School of Nursing Dalhousie University Halifax Nova Scotia Canada
  • Jackie Pidduck
    IWK Health Centre Halifax Nova Scotia Canada
  • Amy Grant
    Nova Scotia Health Authority Halifax Nova Scotia Canada
  • Emilie Dionne
    St. Mary's Research Centre & Family Medicine McGill University Montreal Quebec Canada
  • Cathie Scott
    University of Calgary Calgary Alberta Canada
  • Lisa Keeping‐Burke
    Department of Nursing and Health Sciences University of New Brunswick Saint John New Brunswick Canada
  • Jessie‐Lee McIsaac
    Faculty of Education and Department of Child and Youth Study Mount Saint Vincent University Halifax Nova Scotia Canada
  • Jan Willem Gorter
    Pediatric Rehabilitation Medicine University Medical Centre Utrecht Utrecht The Netherlands
  • Janet Curran
    School of Nursing Dalhousie University Halifax Nova Scotia Canada

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<jats:title>Abstract</jats:title><jats:sec><jats:title>Background</jats:title><jats:p>An increasing number of children have complex care needs (CCN) that impact their health and cause limitations in their lives. More of these youth are transitioning from paediatric to adult healthcare due to complex conditions being increasingly associated with survival into adulthood. Typically, the transition process is plagued by barriers, which can lead to adverse health consequences. There is an increased need for transitional care interventions when moving from paediatric to adult healthcare. To date, literature associated with this process for youth with CCN and their families has not been systematically examined.</jats:p></jats:sec><jats:sec><jats:title>Objectives</jats:title><jats:p>The objective of this scoping review is to map the range of programmes in the literature that support youth with CCN and their families as they transition from paediatric to adult healthcare.</jats:p></jats:sec><jats:sec><jats:title>Methods</jats:title><jats:p>The review was conducted in accordance with the Joanna Briggs Institute's methodology for scoping reviews. A search, last run in April 2021, located published articles in PubMed, CINAHL, ERIC, PsycINFO and Social Work Abstracts databases.</jats:p></jats:sec><jats:sec><jats:title>Results</jats:title><jats:p>The search yielded 1523 citations, of which 47 articles met the eligibility criteria. A summary of the article characteristics, programme characteristics and programme barriers and enablers is provided. Overall, articles reported on a variety of programmes that focused on supporting youth with various conditions, beginning in the early or late teenage years. Financial support and lack of training for care providers were the most common transition program barriers, whereas a dedicated transition coordinator, collaborative care, transition tools and interpersonal support were the most common enablers. The most common patient‐level outcome reported was satisfaction.</jats:p></jats:sec><jats:sec><jats:title>Discussion</jats:title><jats:p>This review consolidates available information about interventions designed to support youth with CCN transitioning from paediatric to adult healthcare. The results will help to inform further research, as well as transition policy and practice advancement.</jats:p></jats:sec>

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