Facilitating transition from children's to adult services for young adults with life-limiting conditions (TASYL): Programme theory developed from a mixed methods realist evaluation.

BACKGROUND

Improvements in care and treatment have led to more young adults with life-limiting conditions living beyond childhood, necessitating a transition from children's to adult services. Given the lack of evidence on interventions to promote transition, it is important that those creating and evaluating interventions develop a theoretical understanding of how such complex interventions may work.

OBJECTIVES

To develop theory about the interventions, and organisational and human factors that help or hinder a successful transition from children's to adult services, drawing on the experience, knowledge, and insights of young adults with life-limiting conditions, their parents/carers, and service providers.

DESIGN

A realist evaluation using mixed methods with four phases of data collection in the island of Ireland. Phase one: a questionnaire survey of statutory and non-statutory organisations providing health, social and educational services to young adults making the transition from children's to adult services in Northern Ireland and one Health Services Executive area in the Republic of Ireland. Phase two: interviews with eight young adults. Phase three: two focus groups with a total of ten parents/carers. Phase four: interviews with 17 service providers. Data were analysed seeking to explain the impact of services and interventions, and to identify organisational and human factors thought to influence the quality, safety and continuity of care.

RESULTS

Eight interventions were identified as facilitating transition from children's to adult services. The inter-relationships between these interventions supported two complementary models for successful transition. One focused on fostering a sense of confidence among adult service providers to manage the complex care of the young adult, and empowering providers to make the necessary preparations in terms of facilities and staff training. The other focused on the young adults, with service providers collaborating to develop an autonomous young adult, whilst actively involving parents/carers. These models interact in that a knowledgeable, confident young adult who is growing in decision-making abilities is best placed to take advantage of services - but only if those services are properly resourced and run by staff with appropriate skills. No single intervention or stakeholder group can guarantee a successful transition. Rather, service providers could work with young adults and their parents/carers to consider desired outcomes, and the range of interventions, in light of the organisational and human resources available in their context. This would allow them to supplement the organisational context where necessary and select interventions that are more likely to deliver outcomes in that context.