What is it like to live with Inflammatory Bowel Disease?
Research type
Research Study
Full title
The Lived Experience of Adolescents with Inflammatory Bowel Disease
IRAS ID
211267
Contact name
Hannah Crook
Contact email
Sponsor organisation
University of East Anglia
Duration of Study in the UK
1 years, 8 months, 29 days
Research summary
Inflammatory Bowel Disease (IBD), which includes Ulcerative Colitis and Crohn’s Disease, effects 1 in 250 people in the UK and is most likely to be diagnosed within adolescent years (10 to 19 years of age). Someone with IBD can experience stomach pain, diarrhoea, fatigue and a delay in puberty. It is a disease that comes and goes without warning and can be treated with medication and, in some cases, surgery. It is helpful to understand what it is like for someone living with a chronic disease, such as IBD. This is because it helps others to understand what it is like and helps services tailor their care and support to patient needs.
Previous research has helped us to understand what it is like for an adult living with IBD. Research has also compared children with IBD to children without a health problem, or with other health problems, to see if there are any differences in difficulties. While this helps us to understand more about the impact of having IBD, it doesn’t tell us what it is like for an adolescent living with IBD. This study aims to address this. It will use interview data from adolescents with IBD to understand their lived experience and the sense they make of their IBD. This research will give a voice to adolescents with IBD and it is important that this is heard by others. It will also add to the theory and could help paediatric services have a better understanding of how to help an adolescent living with IBD.
REC name
Yorkshire & The Humber - Leeds West Research Ethics Committee
REC reference
18/YH/0002
Date of REC Opinion
26 Jan 2018
REC opinion
Favourable Opinion