This post originally appeared on the Patient Information Forum and Division of Health Psychology (British Psychological Society Website ) in 2017

Transition to an adult care system for teenagers with a chronic disease can have a long-term impact on their future physical and psychosocial health.

I’ve recently completed a project for the charity Crohn’s and Colitis UK, developing resources aimed at young people with Inflammatory Bowel Disease (IBD).

What is Inflammatory Bowel Disease (IBD)?

Crohn’s Disease and Ulcerative Colitis are the two main forms of IBD, lifelong conditions that start in childhood and both cause inflammation of the digestive system, but have broader physical and psychosocial effects.

1000 young people with IBD in the UK per year make the move from the safety of their paediatric team, to the big wide world of adult care. Guidelines from the British Society of Gastroenterology advise that transition should be a gradual process that young people are prepared for.

How can health information help?

Many young people don’t feel ready for transition, and written information can help them acquire the knowledge and self-management skills they need to thrive in the adult service.

As a health information writer with a health psychology background I feel that good quality health information can be an intervention in itself. The Patient Information Forum back me up - there is evidence that health information can improve well-being and contribute to clinical effectiveness, safety and patient experience.  

Working with health psychology

Health psychologists can help improve the development of health information by promoting and advising on a participatory, qualitative approach to its development. For example, as a basis for this project I carried out in depth interviews with teenagers.

Harry, aged 16 has Crohn’s Disease, for him the prospect of moving to the adult care team was daunting:

“I feel a bit sad, because I’ve been with my doctor since I was 10, he knows me and I feel like I have built trust.”

Like Harry, many young people are worried about transition. Unfortunately, some may not yet be ready to thrive in an adult health care system, which relies on independence, autonomy and shared decision making.

Themes emerging from the interviews I conducted included fears about medical procedures, differences in communication, and navigating the system. These are therefore directly addressed in the new resource Transition: Moving to adult care.

User-generated health content

Guided by research evidence demonstrating that teenagers see distinct value in user-generated health content a series of blogs were produced as part of the project. Based on the in depth interviews I conducted, these were a different way to make practical use of qualitative research, and tapped into young people’s eagerness for first-hand accounts they can relate to and learn from.

Nick, 22 has ulcerative colitis,

“I’ve come from not really wanting to acknowledge the fact that I’ve got IBD, and not really wanting anyone to know, to being more open about it and researching it myself.”

What can health psychologists do?

Health psychologists can help champion a shift that the Patient Information Forum also promotes  - empowering a younger generation of health service users to assert control over their own health, creating patient’s equipped with self-management skills moving into adulthood and beyond.