Young adults' perception of transition from paediatric to adult care

Abstract Aim Medical advancements will lead to more children with long‐term illnesses and/or disabilities undergoing the transition to adult care. Previous studies show that many young adults are unprepared for this transition, and might suffer from loss of follow‐up. This study aimed to investigate the post‐transfer experiences of the transition among young adults with long‐term illnesses and/or disabilities. Methods A qualitative descriptive design was used. Three semi‐structured focus group interviews were conducted with 15 participants (18–25 years of age) recruited via patient organisations focusing on children and young adults with disabilities and/or long‐term illnesses. The interviews were analysed with conventional content analysis. Results One theme emerged: limbo, defined as an indefinite experience without knowing when or even if something would happen, or whether they would be overlooked. The theme rested on four categories: transition experiences, organisational aspects, influence on daily life, and self‐management. Conclusion Areas for improvement were identified across the entire transition that is, in the preparation, transfer, and post‐transfer stages. Our findings indicate a limited understanding among healthcare providers (HCPs) that the transition continues until the young adult has been fully integrated into adult care.