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

Abstract

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.

Healthcare transition for adolescents and young adults with long‐term conditions: Qualitative study of patients, parents and healthcare professionals’ experiences

“…Hence, parents’ lack of attendance at adult clinic appointments may be a source of information discontinuity and have adverse effects on YAs’ condition management (Allen, Channon, Lowes, Atwell, & Lane, ; Lewis & Noyes, ). Interventions need to focus on collaboration between paediatric and adult services to develop an autonomous YA with the necessary self‐management skills while actively involving parents (Kerr, Price, Nicholl, & O'Halloran, ). Continued parental involvement with adolescents with diabetes is beneficial if there is gradual, supported and negotiated handover of responsibilities for self‐management (Byrne‐Davis, Salmon, Gravenhorst, Eden, & Young, ).…”

A cross-sectional survey of services for young adults with life-limiting conditions making the transition from children’s to adult services in Ireland

“…The aim of the larger research study was to identify the factors associated with a successful transition from children's to adult services for young adults with life-limiting conditions (TASYL study) and used a mixed methods approach. The study had four phases of data collection, and the findings of the full research study are reported elsewhere [19]. Phase one involved the distribution of a survey questionnaire survey to health, social, education and nonstatutory organisations providing transition services to young adults with life-limiting conditions to identify current practices and is the focus of this paper.…”

“…Forbes et al [25] suggest the professional transition model which relates to the availability of a supportive individual, such as a transition coordinator, is particularly suitable for young adults with a shorter life expectancy. Despite this, the survey results indicate that, with the exception of the hospices, most organisations in the statutory health and social care sector were unlikely to take this approach even though it is well supported in the wider literature [19,26].…”

“…Question: In relation to your organisation, at what age does the young person usually begin the transition process and formally transfer to adult services? In the Republic of Ireland, the transition process usually began at age 16 (range [12][13][14][15][16][17][18][19] and in Northern Ireland at age 14 (range 12-18). In both countries, transfer to adult services was Question: Which of the following categories for illness trajectory do the young people/young adults with life-limiting conditions who are using your service fall into?…”

“…This suggests a lack of preparation for key aspects of a successful transition such as effective communication between services and inter-agency working [26]. An early start to the transition process is recommended as a foundation for effective transition [19,26], with a consensus that this should commence when the young person is 13/14 years [12,16,34,35]. In Northern Ireland, the usual age was 14 years, and in the Republic of Ireland, age 16 years.…”