30 research outputs found

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

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    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. Conclusions The Transition Theory travelled well between Ireland and Toronto, indicating its potential to guide both service development and research in different contexts. Future research could include studies with adult service providers; qualitative work to further explicate mechanisms and contextual factors; and use the theory prospectively to develop and test new or modified interventions to improve transition

    Towards a Developmental Framework of Consumer and Carer Participation in Child and Adolescent Mental Health Services

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    Objective: This paper examines the concept of consumer participation in the context of developmental changes in parent/child relationships and associated differences in the utilization of child and adolescent mental health services. Method: Existing definitions and characteristics of mental health service delivery for children and young people are examined to answer the question,"Who is the consumer in the context of clinical services for young clients and their parents, and does this change with the child or young person's developmental stage?". Results: As children, young people and parents utilize services in this area of mental health, the roles of consumer and carer need redefinition to accommodate both young clients and parents as consumers, and parents also as carers. Conclusion: The proposed framework addresses the changing roles of parents and young clients from infancy to early adulthood to guide consumer and carer participation strategies. If child and adolescent mental health services are to apply a developmental perspective and engage both young clients and parents as 'consumers', they need to address challenges related to the differences in expectations and capacities of young clients and parents, to the complexity associated with dual roles, and to promoting meaningful participation
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