Recommendations for research

The committee has made the following recommendations for research.

1 Transition support for young adults

What approaches to providing transition support for those who move from child to adult services are effective and/or cost‑effective?

Why this is important

Many transition policies exist and there are well‑established local models for supporting and improving transition. These models are usually context‑ and service‑specific and very few have been tested for their clinical and cost effectiveness. There is much evidence about the nature and magnitude of the problems of transition from children's to adults' services but very little on what works. Although there were gaps in effectiveness evidence across both children's and adults' services, the committee agreed that research could usefully focus in particular on transition interventions in adult services and on young adults receiving a combination of different services.

2 The role of families in supporting young adults discharged from children's services

What is the most effective way of helping families to support young people who have been discharged from children's services (whether or not they meet criteria for adult services)?

Why this is important

Families and carers often feel left out once the young person moves to adults' services, which can cause them considerable distress and uncertainty. The young person may themselves ask for their family not to be involved so families may also undergo a 'transition' in their involvement in the care of the young person. Alternatively, the young person may want their family involved after they move to adults' services.

We need to understand how best to support and help families and carers through the transition period. A very important subgroup in this regard is young people with long‑term conditions who are leaving care, and who are therefore less likely to have consistent and long‑term support from parents or carers. How can foster carers, social workers or personal advisers in leaving care services best support young people transitioning from children's to adult healthcare services?

3 The role of primary care in supporting young people discharged from children's services

What are the most effective ways for primary care services to be involved in planning and implementing transition, and following‑up young people after transfer (whether or not they meet criteria for adult services)?

Why this is important

Some young people leaving children's services will not have access to the support or services previously available to them (for example physiotherapy) even when their needs for these services remain unchanged. Other young people will not be considered eligible for adult services. Young people in care who are placed outside their local authority are likely to both change providers and GPs during transition. We did not identify any studies researching the role of primary care during transition for any of these groups.

4 The consequences and costs of poor transition

What are the consequences and the costs of young people with ongoing needs not making a transition into adult services, or being poorly supported through the process?

Why this is important

Many young people with ongoing needs fall through the transition gap or disengage with services at this point. Their outcomes remain unknown and are a serious cause for concern. We need longitudinal studies on the consequences of poor or no transition and the costs of unmet need as a result of poor transition.

5 Support to carers and practitioners to help young people's independence

What is the most effective way to help carers and practitioners support young people's independence?

Why this is important

An identified barrier to planned and purposeful transitions into adults' services is supporting adults holding young people back. Both parents and practitioners may prefer young people to stay on longer in children's services and not feel able to support their transfer on to adults' services.

6 Supporting young people to manage their conditions

What is the relationship between transition and subsequent self‑management?

Why this is important

Self‑management is part of being independent, and so is a part of developmental transition to adulthood. The most effective models of self‑management, and whether these are generic or disease‑specific, still need to be established. Some transition programmes include training in self‑management, others do not. Although growing independence is part of the transition into adulthood, personalised healthcare and helping people self‑manage tends to be variable. Further research is needed to understand how self‑management training can be built into transition planning and preparation for young people.

7 Transition in special groups: young offenders institutions

What is the most effective way of supporting young offenders in transition from children's to adults' health and social care services?

Why this is important

Young offenders tend to be vulnerable, with multiple problems. There are concerns that they tend to undergo particularly poor transitions into adult services. There is a lack of evidence for this group, despite documented high need and poor outcomes.

8 Transition in special groups: looked‑after young people

What is the most effective way of supporting care leavers in transition from children's to adults' health services?

Why this is important

The role of birth parents in the management of childhood‑onset long‑term physical and mental health conditions is essential at many levels and continues throughout transition. For young people in local authority care, even if they have had a stable placement or social worker during their time in children's services, transition is a period when their social care support is likely to change.

The status of the health service user changes at age 18, when the primary receiver of information is the young person, not their social worker or foster carer. There is a need for research on how health and social care services can better collaborate with the young person during transition, respecting their need for privacy but also enabling inter‑agency communication when this is agreed by the young person.

  • National Institute for Health and Care Excellence (NICE)