Understanding the experiences and needs of adolescents with IBD 2012

What is this research looking at?

Adolescence is a particularly tough stage for young people with Inflammatory Bowel Disease (IBD). It is at this age that young people are developing relationships outside the family, exploring their personal identity, completing education and moving on to employment. This means that the symptoms of IBD, the treatment, and the knock of effects of a chronic illness can have a profound effect at this time.

Adolescence is also the time when young people with IBD are being passed from children's health services to adult health services – this is called ‘transition’. Adult services tend to have a far less 'hands-on' approach in dealing with patients, and patients are expected to start taking more responsibility for their own health.  There is also less psychological support available.  From other long term conditions, we know that a large number of patients stop attending appointments once they have been transferred to adult services – thus ‘falling through the gap’.  This could have a major impact on their health and future disease outcomes. 

This research study aims to explore the experiences of adolescents living with IBD, and also their perceptions of the illness, their quality of life, and emotional well being.  The researchers want to find how these perceptions change over time, particularly after transition to adult services. 

The researchers will carry out face-to-face interviews and questionnaires with a range of young people. They hope that this will reveal how young people feel about transition, and their relationships with hospital staff.  This will give the researchers a greater understanding of the issues faced by  young people with IBD – and then this can inform how they organise and provide care for this group. 

Conclusions 

This is an ongoing study with no conclusions as yet. 

What do researchers think this could mean for people with IBD?

This research will enable young people with IBD to have their voices heard. It will ensure medical services are tailored towards patient's needs according to their age and life stage

Who's leading the research: Dr. Georgina Rowse, University of Sheffield

Our funding: £65,000 over 24 months

Official title of the application: “Adolescents with IBD: their relationship with their disease, identity and illness perceptions.”

Tags: young people