title: Parents in transition: Experiences of parents of young people with a liver transplant transferring to adult services.
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.
authors.affiliation: Liver Unit, Birmingham Children's Hospital NHS Foundation Trust, Birmingham, UK.
authors.forename: J
authors.initials: J
authors.lastname: Wright
authors.affiliation: Liver Unit, Birmingham Children's Hospital NHS Foundation Trust, Birmingham, UK.|University of Birmingham, Birmingham, UK.
authors.forename: L
authors.initials: L
authors.lastname: Elwell
authors.affiliation: Centre for Musculoskeletal Research, University of Manchester, Manchester, UK.
authors.forename: J E
authors.initials: JE
authors.lastname: McDonagh
authors.affiliation: Liver Unit, Birmingham Children's Hospital NHS Foundation Trust, Birmingham, UK.
authors.forename: D A
authors.initials: DA
authors.lastname: Kelly
authors.affiliation: Critical Care and Cardiorespiratory Division, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
authors.forename: J
authors.initials: J
authors.lastname: Wray
mesh_terms: D000293:Adolescent; D000328:Adult; D017028:Caregivers; D005260:Female; D006801:Humans; D017093:Liver Failure / Q000601:surgery*; D016031:Liver Transplantation; D008297:Male; D010290:Parents; D036301:Qualitative Research; D012017:Referral and Consultation; D012648:Self Care; D060305:Transition to Adult Care; D055815:Young Adult
keywords: liver transplant; parents; transition