Anneliese Levy, Freelance Health Information Writer and Researcher, with an MSc in Health Psychology
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). Crohn's Disease and Ulcerative Colitis are the two main forms of IBD, and are lifelong conditions that start in childhood and both cause inflammation of the digestive system, but have broader physical and psychosocial effects.
Around 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. New guidelines from the British Society of Gastroenterology advise that transition should be a gradual process that young people are prepared for. For young people who don’t feel ready for this transition, 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 wellbeing and contribute to clinical effectiveness, safety and patient experience. 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, and 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.
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.”
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.