Abstract
Previous research has highlighted a lack of continuity of care when young people with a neurodevelopmental condition make the transition from children's to adult specialist healthcare services. A lack of planning, consistency, and availability of adult services has been found to lead to; increased anxiety, poor health outcomes, reduced support and some young people not receiving healthcare. The majority of transition research has focused on what health professionals consider important in the transition process, rather than focusing on the experiences of the young people and those closest to them. Our objective was to gather evidence from young people (and their families) who had experienced transition from children's to adult specialist healthcare services through semi-structured interviews. Volunteers were recruited from two London boroughs. All young people were aged between 18 and 25 years with a neurodevelopmental condition (Attention Deficit Hyperactivity Disorder, Autism Spectrum Disorder and/or an Intellectual Disability). Overall, we interviewed six young people with support from a family member. Five further family members were interviewed on behalf of the young person. In total, ten semi-structured interviews were transcribed verbatim and analysed using Interpretative Phenomenological Analysis. Four themes emerged from the analysis: (a) Parents as advocates, (b) Availability of adult's specialist health and social care services, (c) Lack of information sharing and (d) Transition as a binary, abrupt change. Our findings suggest the transition experience could be improved by changing service specifications to incorporate assessment and handover across the age range of 16-20 years. Additionally, statutory services should understand and provide the coordination role now offered by parents in transition. We suggest future research could evaluate the feasibility of a patient-owned online information sharing tool with information about relevant services for young people and their families.