CF and the gut: what adults would tell their younger selves. Version 1
Research type
Research Study
Full title
Exploring the lived experience of adults with Cystic Fibrosis: what they would tell their younger selves about the CF gut
IRAS ID
218231
Contact name
Laurie Cave
Contact email
Sponsor organisation
University of Leeds
Clinicaltrials.gov Identifier
RDL#113414, Research Data Leeds (data management)
Duration of Study in the UK
0 years, 4 months, 26 days
Research summary
Title: Exploring the lived experience of adults with Cystic Fibrosis: what they would tell their younger selves about the CF gut\n\nWhat questions will the study answer?\nThe study will explore how adults with cystic fibrosis (CF) make sense of how CF affects their gut. We would like to learn about their experiences and how they developed their knowledge and understanding. There may have been something that particularly helped or there may be things they wish they had known sooner. We would like them to share their insights to answer the question: ‘what would they tell their younger selves about the CF gut?’. These insights will then inform development of an intervention for children with CF, which will focus on confidence and skills to manage this aspect of their CF.\n\nWho can take part?\nAdults with CF aged 20-30 years who were diagnosed with CF in childhood and who use pancreatic enzyme replacement therapy. Dietitians at a single Regional Adult CF Unit will invite people to take part when they attend outpatient clinic or the ward. If interested, they will be given written information and can contact, or with their permission, be contacted by, a researcher from the University of Leeds to discuss the study. \n\nWhat will it involve?\nFor those agreeing to take part, it will involve one face-to-face interview with a researcher, that will last up to one hour and will be audio-recorded. This would be planned to take place at a convenient time whilst on the ward, during the second week of a standard two-week admission at the Regional Adult CF Unit. The recorded interviews would then be written out, with all personal information removed, and looked at in detail to answer the study question. Those interviewed will be able to receive a summary of the study findings. \n[Study duration: March – July 2017]\n\n
REC name
South West - Cornwall & Plymouth Research Ethics Committee
REC reference
17/SW/0042
Date of REC Opinion
15 Feb 2017
REC opinion
Favourable Opinion