Supporting young people to live well with IBD
Research type
Research Study
Full title
Supporting young people to live well with Inflammatory Bowel Disease
IRAS ID
268658
Contact name
Lou Atkinson
Contact email
Sponsor organisation
Aston University
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
Inflammatory bowel disease (IBD) is a term used to describe two debilitating chronic conditions: Crohn’s disease and Ulcerative colitis. Such conditions are characterised by intermittent and unpredictable gastrointestinal symptoms that are often difficult to manage. Young people are required to engage in a variety of complex behaviours, including adhering to a daily treatment routine involving taking medication and lifestyle behaviours, in order to manage their condition. To understand the challenges of living with IBD for young people and families and what service users would want or need from an intervention to help them address these causes, interviews will firstly be conducted with health professionals. Secondly, focus groups and interviews will be conducted with young people with IBD and with parents of young people with IBD. Information will be elicited on how IBD affects the young person’s life, beliefs about the condition and its treatment, factors that make treatment adherence difficult, beliefs about the most effective treatments to support treatment adherence and views on acceptable and engaging future interventions. Participants will be approximately 12-15 young people aged 13-18 years with IBD, 12-15 parents of young people (aged 13-18 years) with IBD, and 10 IBD health professionals. Participants will be identified and recruited through the Gastroenterology department at Birmingham Children’s Hospital (BCH) which has a large cohort of IBD patients, as well as an established and successful parent-patient panel. The charity Crohn’s and Colitis UK will also assist in the recruitment of young people and parents. Interviews will be conducted either face-to-face or via telephone/Skype. Face-to-face interviews will take place at BCH, Aston University or a location of the participants choosing. The focus groups will be facilitated at BCH or Aston University. Informed consent will be obtained from all participants prior to the collection of any data. With permission, interviews and focus groups will be recorded and the recordings transcribed and analysed using a thematic framework approach. To prevent others being able to identify participants based on the responses that are given each participant will be given a pseudonym.
REC name
London - Bloomsbury Research Ethics Committee
REC reference
20/LO/0106
Date of REC Opinion
13 Mar 2020
REC opinion
Further Information Favourable Opinion