LAUSR

Transition of adolescents and young adults within healthcare services has become increasingly important as more children are surviving into adulthood with long-term conditions. Yet limited empirical evidence exists regarding transition experiences. Transition is not simply about a physical transfer to another service as involves multiple components and medical, psychosocial, developmental, educational and vocational needs. Successful transition to adult services requires a person-centred, developmental, psychosocial, flexible, multidisciplinary, coordinated approach. We undertook the first Irish study to examine needs and perspectives in relation to healthcare transition for adolescents and young adults with the following long-term conditions: diabetes, cystic fibrosis, and congenital heart disease. Using a qualitative inductive approach we carried out semi-structured interviews with adolescents and young adults aged 14–25 years (n= 47), parents (n= 36) and health professionals (n= 34) which was part of a larger mixed-methods study on transition. We accessed adolescents before transition and then a different sample who had made the transition within same disease group. The sample was obtained from two children’s hospitals and four general hospitals in Ireland. Ethical approval was obtained from relevant ethics committees. Findings revealed that transition occurred between the ages of 16 and early 20s depending on the service. None of the hospitals had a transition policy and transition practices varied considerably. Adolescents worried about facing the unknown, communicating and trusting new staff and self-management. Transition process was smooth for some young adults, whilst others experienced very abrupt transfer. Parents desired greater involvement in the transition process with some perceiving a lack of recognition of the importance of their role. In paediatric services, nurses made great efforts to engage adolescents who struggled with treatment adherence and clinic attendance. Whereas after transfer, little effort was made to engage young adults if there were lapses in care, as this was generally considered the young person’s prerogative. This study has revealed that transitioning to adult care is challenging for many AYAs, irrespective of their condition, due to unmet needs in relation to information, transition preparation, and development of self-management skills. The degree to which the shift in responsibility had occurred prior to transition to adult services appeared to influence successful transition to new roles for adolescents and young adults and their parents. Interventions need to address the renegotiation of responsibility between AYAs and parents using a developmental framework over a period of time rather than a one-off ‘chat’.