“Transition from children’s to adult services for adolescents/young adults with life-limiting conditions: developing realist programme theory through an international comparison”

Abstract

Background: Managing transition of adolescents/young adults with life-limiting conditions from children's to adult services has become a global health and social care issue. Suboptimal transitions from children's to adult services can lead to measurable adverse outcomes. Interventions are emerging but there is little theory to guide service developments aimed at improving transition. The Transition to Adult Services for Young Adults with Life-limiting conditions (TAYSL study) included development of the TASYL Transition Theory, which describes eight interventions which can help prepare services and adolescents/young adults with life-limiting conditions for a successful transition. We aimed to assess the usefulness of the TASYL Transition Theory in a Canadian context to identify interventions, mechanisms and contextual factors associated with a successful transition from children's to adult services for adolescents/young adults; and to discover new theoretical elements that might modify the TASYL Theory. Methods: A cross-sectional survey focused on organisational approaches to transition was distributed to three organisations providing services to adolescents with life-limiting conditions in Toronto, Canada. This data was mapped to the TASYL Transition Theory to identify corresponding and new theoretical elements. Results: Invitations were sent to 411 potentially eligible health care professionals with 56 responses from across the three participating sites. The results validated three of the eight interventions: early start to the transition process; developing adolescent/young adult autonomy; and the role of parents/carers; with partial support for the remaining five. One new intervention was identified: effective communication between healthcare professionals and the adolescent/young adult and their parents/carers. There was also support for contextual factors including those related to staff knowledge and attitudes, and a lack of time to provide transition services centred on the adolescent/young adult. Some mechanisms were supported, including the adolescent/young adult gaining confidence in relationships with service providers and in decision-making.

Where Do Neurodevelopmental Disorders Go? Casting the Eye Away from Childhood towards Adulthood

“…A lack of engagement with adult services may result in adverse outcomes, namely, a loss of follow-up and reduced compliance with treatment, with potentially negative consequences in both the educational and social spheres [ 181 , 182 , 183 ]. In turn, poor engagement can follow inadequate preparation for the transition process while the adolescent patient is still under childhood neuropsychiatric care or unsatisfactory transition planning [ 184 , 185 ]. Thus, a healthy, planned, coordinated, patient-centered interaction between childhood neuropsychiatrists and adult healthcare professionals seems to be essential in promoting a smooth transition process and ensuring continuity of care [ 172 ].…”

Mapping frameworks and approaches to measuring the quality of transition support services for young people with intellectual and developmental disabilities

“…Although there is not a lot of literature focused on the factors that bring about successful transition outcomes, the research that does exist suggests that key factors might include young people having experience of different jobs to help them decide what they might like to do after school (42) and good co-ordination between educational system and the labour marker (18). In transition from child to adult health services, Kerr et al (43) found validating evidence for three of the eight interventions reviewed-an early start to the transition process, developing adolescent/young adult autonomy and the role of parents/carers. The importance of effective communication between healthcare professionals and the adolescent/young adult and their parents/carers was also highlighted.…”

A ritka betegségben szenvedő gyermekek átvezetése a felnőttellátásba

“…A páciens részére segítséget kell nyújtani a megfelelő járóbeteg-gondozó és fekvőbeteg-intézmény azonosításában. Jövőbeli kórházi ellátási igényeikre is készülni kell, azaz hogy a legmegfelelőbb szakértői központba kerülhessenek [11].…”