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

J. Wright, Laura Elwell, Janet Mcdonagh, D A Kelly, J. Wray

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Predictors of successful transition from paediatric 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 paediatric liver transplant recipients (15.2-25.1 years) participated in semi-structured interviews. Interviews were analysed using Interpretative Phenomenological Analysis.

Analysis revealed three key themes: ‘emotional impact of transplantation’, ‘protection versus 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 emphasise their role in transition and guide the transfer of self-management skills from parent to young person.
Original languageEnglish
JournalPediatric transplantation
Issue number1
Early online date27 Jul 2016
Publication statusPublished - 1 Feb 2017


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