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

AimsThe 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.BackgroundDespite two decades of research and quality improvement initiatives, young people with life‐limiting and life‐threatening conditions still find transition unsatisfactory.DesignSecondary analysis: 77 qualitative interviews with children and young people (20), parents (35), siblings (1), professionals (21).MethodsQualitative framework analysis completed 2017.FindingsSix 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.ConclusionInequity 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.