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Parents in transition: Experiences of parents of young people with a liver transplant transferring to adult services

Wright, J; Elwell, L; McDonagh, JE; Kelly, DA; Wray, J; (2017) Parents in transition: Experiences of parents of young people with a liver transplant transferring to adult services. Pediatric Transplantation , 21 (1) , Article e12760. 10.1111/petr.12760. Green open access

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Abstract

Predictors of successful transition from pediatric to adult services include ability to self-manage and engage with healthcare services. Parents have a key role in healthcare management throughout childhood and adolescence including encouraging development of self-management skills in their children. Transition to adult services can be challenging for parents and young people, yet parents' views regarding transition remain largely unexplored. Nine parents of pediatric liver transplant recipients (15.2-25.1 yr) participated in semistructured interviews. Interviews were analyzed using IPA. Analysis revealed three key themes: "emotional impact of transplantation," "protection vs. independence," and "ending relationships and changing roles." Parents expressed the dichotomous nature of the desire to promote independence in their child while still maintaining control and protection, and discussed how changing roles and relationships were difficult to navigate. Parents are important facilitators of young people's development of self-management skills for successful transfer to adult services. Parents should be supported to move from a "managerial" to a "supervisory" role during transition to help young people engage independently with the healthcare team. Findings support the development of interventions for parents to emphasize their role in transition and guide the transfer of self-management skills from parent to young person.

Type: Article
Title: Parents in transition: Experiences of parents of young people with a liver transplant transferring to adult services
Location: Denmark
Open access status: An open access version is available from UCL Discovery
DOI: 10.1111/petr.12760
Publisher version: https://doi.org/10.1111/petr.12760
Language: English
Additional information: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions.
Keywords: Liver transplant, parents, transition, Adolescent, Adult, Caregivers, Female, Humans, Liver Failure, Liver Transplantation, Male, Parents, Qualitative Research, Referral and Consultation, Self Care, Transition to Adult Care, Young Adult
UCL classification: UCL
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Population Health Sciences > Institute of Cardiovascular Science
URI: https://discovery-pp.ucl.ac.uk/id/eprint/10069255
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