Conflicting realities experienced by children with life-limiting and life-threatening conditions when transitioning to adult health services

Abstract

Aims: The aim of this study was to report a secondary qualitative analysis exploring the cultural and practical differences that young people and parents experience when transitioning from children's to adult services. Background: Despite two decades of research and quality improvement initiatives, young people with life-limiting and life-threatening conditions still find transition unsatisfactory. Design: Secondary analysis: 77 qualitative interviews with children and young people (20), parents (35), siblings (1), professionals (21). Methods: Qualitative framework analysis completed 2017. Findings: Six conflicting realities were identified: Planning to live and planning to die with different illness trajectories that misaligned with adult service models; being treated as an adult and the oldest “patient” in children's services compared with being treated as a child and the youngest “patient” in adult services; being a “child” in a child's body in children's services compared with being a “child” in an adult's body in adult services for those with learning impairments; being treated by experienced children's professionals within specialist children's services compared with being treated by relatively inexperienced professionals within generalist adult services; being relatively one of many with the condition in children's services to being one of very few with the condition in adult services; meeting the same eligibility criteria in children's services but not adult services. Conclusion: Inequity and skills deficits can be addressed through targeted interventions. Expanding age-specific transition services, use of peer-to-peer social media, and greater joint facilitation of social support groups between health services and not-for-profit organizations may help mitigate age dilution and social isolation in adult services.