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The Experiences of Young Liver Patients Transferring From Children’s to Adult Services and Their Support Needs for a Successful Transition

Toft, Alex; Taylor, Rachel; Claridge, Lee; Clowes, Charlotte; Ferguson, James; Hind, Jonathon; Jones, Rebecca; McClean, Patricia; McKiernan, Patrick; Samyn, Marianne; Coad, Jane

Authors

Alex Toft

Rachel Taylor

Lee Claridge

Charlotte Clowes

James Ferguson

Jonathon Hind

Rebecca Jones

Patricia McClean

Patrick McKiernan

Marianne Samyn

JANE COAD Jane.Coad@nottingham.ac.uk
Professor of Children and Family Nursing



Abstract

© 2018, NATCO. All rights reserved. Background: The period of transition from pediatric to adult services represents a time when young people need support, information, and appropriate care in order to successfully move. It is a period that is associated with nonadherence and disengagement with care. Objective: To explore the experiences of young liver transplant recipients transitioning to adult services and determine what they require in order to achieve a successful move. The research also explored the possibility of using a mobile phone application (app) as a tool to support transition. Design: Qualitative approach using novel arts-based focus groups and one-to-one interviews. Participants: Twenty-one young people aged 16 to 25 years, 16 health-care professionals involved in their care, and 7 young people as follow-up. Participants used services provided by the 3 liver centers in England (Leeds, Birmingham, and London). Results: Data highlighted the variability of transition pathways in England for young people moving from child to adult health services. The results showed that they required clear information regarding transition processes including specific medical information and that there was a shortfall in such information. Support was required in the form of a designated transition coordinator or similar specialist who could act as a point of reference and guidance throughout the process. Transitions needed to be individualized and based upon transition readiness rather than age, although the research showed that age cut-offs were still used. Conclusion: Young people welcomed apps to provide information, reminders, contacts, and connections. Future research should explore the efficacy of such apps.

Citation

Toft, A., Taylor, R., Claridge, L., Clowes, C., Ferguson, J., Hind, J., …Coad, J. (2018). The Experiences of Young Liver Patients Transferring From Children’s to Adult Services and Their Support Needs for a Successful Transition. Progress in Transplantation, 28(3), 244-249. https://doi.org/10.1177/1526924818781567

Journal Article Type Article
Acceptance Date May 1, 2018
Online Publication Date Jun 13, 2018
Publication Date Sep 1, 2018
Deposit Date Oct 1, 2019
Journal Progress in Transplantation
Print ISSN 1526-9248
Electronic ISSN 2164-6708
Peer Reviewed Peer Reviewed
Volume 28
Issue 3
Pages 244-249
DOI https://doi.org/10.1177/1526924818781567
Public URL https://nottingham-repository.worktribe.com/output/2729387
Publisher URL https://journals.sagepub.com/doi/10.1177/1526924818781567