Transitioning between paediatric and adult healthcare services : a qualitative study of the experiences of young people with spinal cord injuries and parents/caregivers

Objectives Healthcare transition (HCT) interventions are pivotal to paediatric rehabilitation. However, there has been limited research focusing on HCT in young people with spinal cord injury (SCI). To date, little has been reported on key factors that may contribute to a positive or negative transition experience and what, if any, are the gaps in the transition process. This study explored the experiences of transition from paediatric to adult healthcare for young people with SCI and parents/caregivers in pursuit of co-designing and developing an intervention to support transition. Design, setting and participants This qualitative study forms part of the planning phase of a larger participatory action research project. It supports obtaining a rich understanding of the phenomenon and the issues and actions necessary to achieve change. Semi-structured individual interviews were conducted online between April and June 2021 with young people with SCI and parents/ caregivers who had transitioned or were preparing for the transition from paediatric to adult healthcare in NSW, Australia. The interviews were analysed using an inductive reflexive thematic analysis approach. Results The study recruited nine participants, five young people with SCI and four parents/caregivers. The interviews provided invaluable insight into young people with SCI and their parents’/caregivers’ experiences of HCT. As HCT experiences were often less than optimal and needs were not adequately met, some recommendations were offered. These included a coordinated and streamlined handover from paediatric to adult healthcare providers, and a ‘one-stop shop’ for young people with SCI and their parents/caregivers to access transition information, such as how it occurs, who to call for ongoing support and advice, and tips on how to transition successfully. Conclusion Providing a coordinated and streamlined handover process as well as access to more contextrelated information could improve the transition experiences of young people with SCI and parents/ caregivers, resulting in improved health outcomes and greater independence. Trial registration ACTRN12621000500853.