Stuck in Transit: A qualitative study of the transitional care needs of young people with epilepsy and juvenile idiopathic arthritis

Abstract

Transition services for young people with long-term conditions often fall short. This qualitative study explored perspectives on service features that enable effective transition in epilepsy and juvenile idiopathic arthritis. Patients, parents, clinicians and
service commissioners took part in semi-structured interviews (n = 18). Thematic analysis was used to identify key features, barriers, and facilitators of effective transition across participant groups. Analysis led to the development of nine sub-themes
which mapped to overarching domains of communication, capability, continuity and capacity. Findings include the need for age appropriate communication, the link between parental dependence, self-care and patient knowledge, the value of service
integration for continuity, and the impact of capacity on flexible and age appropriate transition services.