Young People with IBD: identity, illness perceptions & transition
Research type
Research Study
Full title
Young People with Inflammatory Bowel Disease: their relationship with their disease, identity and illness perceptions
IRAS ID
141793
Contact name
Alenka Brooks
Contact email
Sponsor organisation
Sheffield Teaching Hospitals NHS Foundation Trust
Research summary
Inflammatory Bowel Disease (IBD) affects one in 350 people in the UK with 25% of IBD diagnosed under the age of 16. Adolescence is a key time for developing ones own identity, completing education, gaining employment and becoming an autonomous individual. Living with IBD during adolescence can have a major impact on all these elements. It is also during this period when young people with IBD need to move (‘transition’) from child services into adult services.
The aims of the study are to understand young peoples’ experiences of living with IBD, to explore adolescents’ illness perceptions (these are their beliefs about the cause, identity, consequences, timeline and cure/controllability of their IBD), quality of life and psychological well-being and to examine whether these perceptions change over time.
Patients will be recruit young people in local child and adult IBD services, aged between 16 and 21, with confirmed diagnoses of IBD. The research will consist of 2 related phases:
Phase 1: 2 sets of in-depth individual interviews to explore experiences of living with IBD. Topics covered will include receiving a diagnosis, how the illness impacts on being a young person, identity, feelings about the illness and ways of coping. A further set of interviews in those who have undegone transition into adult care will cover themes of relationships with staff, timing decisions, social support, transfer of responsibility, and self-management.
Phase 2: We will conduct a questionnaire-based survey about illness perceptions, quality of life, disease activity, psychological well-being, health risk behaviours and adherence to medication and demographic data. We will also ask the participants to complete the same questionnaires 12 months later.
It is hoped that these results will inform how we provide and organise care for IBD patients to better engage young people in adult services and improve their long-term outcomes.
REC name
North East - Tyne & Wear South Research Ethics Committee
REC reference
14/NE/0024
Date of REC Opinion
30 Jan 2014
REC opinion
Further Information Favourable Opinion