“We Sometimes Hold on to Ours” – Professionals’ Views on Factors that both Delay and Facilitate Transition to Adult Care

Abstract

BackgroundThe transition from child to adult services is a crucial time in the health of young people who may potentially fall into a poorly managed “care gap.” Health service provision, which fails to meet the needs of young people and families at this time of significant change, may result in deterioration in health or disengagement with services, which can have negative long-term consequences. Developing transitional care packages has become a focus of activity in the United Kingdom and elsewhere. Indeed, policy documents have been trying to guide practice for many years, with some variable success. There is much work still to be done, particularly around how guidance and the sharing of best practice, when combined can result in a change in practice.ObjectiveThis study aimed to explore the views of professionals involved in transitional care, the process of transition in their services, and the barriers and facilitators to transition.MethodsThis was a qualitative study using focus group methodology. Four focus groups were carried out, attended by 36 health professionals across child and adult services. They had expertise in working with young people with various health conditions and disabilities. Transcripts were analyzed using qualitative content analysis.ResultsEight key factors that impact on transition emerged from the data. These included factors associated with the patient group (such as age, health condition, having complex needs) as well as factors associated with services (such as the availability of equivalent services within adult care and the links between child and adult team).ConclusionIt is imperative that health professionals consider the population they are working with when planning transitional care and take into account the factors which can lead to delayed transition, so that this can be avoided if possible. Numerous examples of initiatives to facilitate more timely transition were shared: these have been reflected in our “Benchmarks for Transition from Child to Adult Health Services.” We offer these benchmarks to inform and guide the practice of others and illustrate their potential for use in the context of the findings shared here.

Instruments Measuring Self-Care in Children and Young Adults With Chronic Conditions: A Systematic Review

“…In Italy, 91.8% of children aged 0–14 are in good health, 9.6% have one or more chronic conditions, 1.6% suffer from two or more chronic illnesses ( 9 ). In addition, children with complex conditions have to deal with multiple transitions across providers and care settings ( 10 ), and those requiring technology support and home care bear even higher costs ( 11 – 13 ). Furthermore, long-term chronic conditions have a strong impact on wellbeing and require ongoing management over a period of years or decades ( 14 ).…”

Transition From Pediatric to Adult Care by Young Adults With Chronic Granulomatous Disease: The Patient's Viewpoint

“…It should build on the strengths that have been previously identified in this study including the participants’ independence in making and attending appointments and refilling medications 21 . It is also crucial that the program assess and address the potential barriers that AYA encounter such as not having adequate knowledge about the disease process.…”

Gathering expert opinion to inform benchmarks to support transitional care

“…In this article, we report from professionals who formed group (a). Findings from the other groups are reported elsewhere (Aldiss et al, 2015(Aldiss et al, , 2016. Aims 1.…”

“…However, there is an increasing amount of information available to help practitioners achieve seamless transition; for example, practical guidance, position statements and pathways (Betz, 2017;Noyes et al, 2014;Suris and Akre, 2015), resources (e.g. Ready Steady Go (Nagra et al, 2015)), and now the benchmarks (available via www.transitionstudy.co.uk): informed by the expert opinion reported here, combined with evidence from young people, parents, health professionals and policy (Aldiss et al, 2015(Aldiss et al, , 2016. The benchmarks (Table 2) offer a straightforward, practical 'tool' for services to measure themselves against to see how they are doing; we would suggest that they could help services begin to identify and close some of the missing links and provide a platform to share successful practice initiatives, with the ultimate goal of improving and individualizing transitional care.…”