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.