Research focus

Research focus: the transition from child to adult care

This digest summarises three studies that seek to explore or prevent the gap between child and adult health services for young people with long term conditions.

This digest summarises three studies that seek to explore or prevent the gap between child and adult health services for young people with long term conditions.

Transition from child to adult care – ‘It’s not a one-off event’: development of benchmarks to improve the experience

This work aimed to develop a clinical benchmarking tool to support the comparison and sharing of good practice in the transition of young people (YP).

Development benchmarks
development benchmarks Picture: iStock

A qualitative approach was adopted. Primary data were collected through focus groups with healthcare professionals (n=36) and national experts (n=21), and workshops with YP age 14 to 20 years (n=9) and parents (n=9). Data were analysed using content analysis. Secondary data were collected by searching national policies and guidelines. 

A three stage process was followed. The first involved the initial development of factors and indicators of best practice from the primary and secondary data; these were distributed and reviewed by workshop participants. In the second stage, workshop participants were asked to provide examples of best and poor practice for each benchmark.

In the final stage, the benchmarks were distributed for comment to focus group and workshop participants. 

Eight factors and their associated indicators of best practice were developed: moving to manage a health condition as an adult, support for gradual transition, co-ordinated child and adult teams, YP friendly services, written documentation, parents, assessment of ‘readiness’, and involvement of the GP. The authors recommend the use of these benchmarks to inform both system level strategies and evaluation programmes.

Aldiss S, Ellis J, Cass H et al (2015) Journal of Pediatric Nursing. 30, 638-647

An e-health intervention to support the transition of young people with long-term illnesses to adult healthcare services: design and early use

The aim was to co-design a website to support young people (YP) with long term conditions (LTCs) in their transition to adult services in Ireland. Participants who had taken part in an earlier project exploring the information and e-health technology needs of young people between 14 and 25 years old with diabetes, cystic fibrosis or congenital heart disease were invited to take part. 

Using e-learning to support transitioning Picture: iStock

The website was developed in three phases. In the first, a co-design group was set up that included five young people who were to review the content and layout of the site. Two advisory groups were established that included healthcare professionals, parents and expert patient groups. 

In the second phase participatory workshops with 12 young people and four one-to-one interviews were conducted. These found a preference for information that was trustworthy, empowering, colourful, easily downloaded, and written in non-patronising language. Young people also expressed a preference for digital testimonials and advice about becoming more independent, managing LTCs, preparing for transition, and the difference between child and adult services.

In the third stage, the website was created and tested for usability by the co-design group. The site was launched in December 2013. Preliminary feedback suggests 100 visits per week.

Coyne I, Prizeman G, Sheehan A et al (2016) Patient Education and Counselling. 90, 1496-1504.

The experiences and impact of transition from child to adult healthcare services for young people with type 1 diabetes: a systematic review

This systemic review examined the impact of transition on health outcomes and behaviours in young people (YP) with type 1 diabetes and investigated the experiences of transition from the perspectives of YP, parents and healthcare providers. 

Assessing the transition for children with Type 1 diabetes Picture: iStock

Bibliographic databases were searched for papers that reported primary research focusing on type 1 diabetes between January 2001 and June 2014. Papers were included if they compared outcomes after transition with corresponding outcomes in child services or with a comparison group and reported outcomes and/or experiences during or after transition.

Forty-three papers met the inclusion criteria. There were mixed results in terms of change in glycaemic control and diabetes-related hospitalisations, but all studies assessing attendance found worse attendance post-transition. Data on experiences reported young people and parents experienced greater difficulty in accessing and maintaining diabetes healthcare.

Young people were required to develop self-management and advocacy skills to navigate the transition and adult services, but not all were adequately prepared.

Studies assessing the outcomes of participants who attended transition programmes, compared to those who did not, found no change in or improved glycaemic control, better attendance rates and fewer hospitalisations post transition. The authors recommend well designed randomised controlled trials are developed to assess this relationship.

Sheehan A, While A, Coyne I (2015) Diabetic Medicine. 32, 440-458.

Compiled by Caroline McGraw, lecturer at City, University of London

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