Transition from children’s to adult services for adolescents/young adults with life-limiting conditions: developing realist programme theory through an international comparison

Helen Kerr , Kimberely Widger, Geraldine Cullen-Dean, Jayne Price, Peter O'Halloran

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Abstract

Background:
Managing transition of adolescents/young adults with life-limiting conditions from children’s to adult services has become a global health and social care issue. Suboptimal transitions from children’s to adult services can lead to measurable adverse outcomes. Interventions are emerging but there is little theory to guide service developments aimed at improving transition. The Transition to Adult Services for Young Adults with Life-limiting conditions (TAYSL study) included development of the TASYL Transition Theory, which describes eight interventions which can help prepare services and adolescents/young adults with life-limiting conditions for a successful transition. We aimed to assess the usefulness of the TASYL Transition Theory in a Canadian context to identify interventions, mechanisms and contextual factors associated with a successful transition from children’s to adult services for adolescents/young adults; and to discover new theoretical elements that might modify the TASYL Theory.

Methods:
A cross-sectional survey focused on organisational approaches to transition was distributed to three organisations providing children’s services to adolescents with life-limiting conditions in Toronto, Canada. This data was mapped to the TASYL Transition Theory to identify corresponding and new theoretical elements.

Results:
Invitations were sent to 411 potentially eligible health and social care professionals with 56 responses from across the three participating sites. Results validated six key interventions, partially supported two others, and identified one new intervention: effective communication between healthcare professionals and the adolescent/young adult and their parents/carers. There was very strong support for three of the eight interventions: early start to the transition process; developing adolescent/young adult autonomy throughout the transition process; and the crucial role of parents/carers. There was also support for the need for a number of contextual factors as a lack of staff knowledge regarding adult services was identified in children’s services, and an issue of having adequate time to provide transition services centred on the adolescent/young adult.

Conclusions:
The Transition Theory travelled well between Ireland and Toronto, indicating its potential to guide both service development and research in different contexts. Future research could include research with adult service providers; qualitative work to further explicate mechanisms and contextual factors; and use the theory prospectively to develop and test new or modified interventions to improve transition.
Original languageEnglish
Pages (from-to)1-11
Number of pages11
JournalBMC palliative care
Volume19
Issue number115
DOIs
Publication statusPublished - 30 Jul 2020

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