A Study into the Impact of Cystic Fibrosis on Healthy Siblings
Research type
Research Study
Full title
A Grounded Theory Study into the Impact of Cystic Fibrosis Diagnosed by Newborn Screening on Healthy Siblings
IRAS ID
168541
Contact name
Jane Chudleigh
Contact email
Sponsor organisation
King's College London
Duration of Study in the UK
0 years, 5 months, 10 days
Research summary
Cystic Fibrosis (CF) is one of the most common life-limiting inherited diseases in the UK. Since 2007, infants born in the UK have been universally tested for the disease through the NHS Newborn Screening Programme. This research project aims to explore how CF affects healthy siblings. Children and young people aged 7 to 17 years old who have a sibling diagnosed with CF by Newborn Screening will be selected to have a semi-structured interview lasting approximately 30 minutes. The results will be analysed using a grounded theory model of data analysis. It is hoped that the results of this study will help to inform healthcare workers in order to support families and healthy siblings.
REC name
London - Chelsea Research Ethics Committee
REC reference
15/LO/0642
Date of REC Opinion
18 May 2015
REC opinion
Further Information Favourable Opinion