Sharing a child’s diagnosis of cystic fibrosis with others
Research type
Research Study
Full title
What are the experiences of parents in sharing their child’s diagnosis of cystic fibrosis, following newborn screening, with others?
IRAS ID
144565
Contact name
Jane Chudleigh
Contact email
Sponsor organisation
Kings College London
Research summary
This is a mixed quantitative/qualitative research project to understand the experiences of parents in sharing their child’s diagnosis of cystic fibrosis (CF), following newborn screening (NBS), with others. Approximately 40 eligible families, parents of children with cystic fibrosis, will be given a questionnaire with the aim of understanding when, how and with whom the diagnosis was shared, difficulties experienced in sharing the information and responses from those it was shared with.
The primary objective of the study is to understand when, how and with whom the diagnosis was shared, difficulties experienced in sharing the information including how prepared or under prepared they felt (both emotionally and in terms of knowledge about the condition) and responses from those it was shared with.
The secondary objective is to use this information to produce an information booklet which will help prepare parents more fully for this process and provide healthcare professionals with recommendations as to how they can give more support and guidance in this area.
The proposed study population is parents of children diagnosed with CF as a result of newborn screening in the UK who are under the care of Royal Brompton and Harefield Foundation Trust (RBHT). Each family will receive notification of the study a week before their child’s clinic appointment at RBHT. Informed consent will be obtained a week later at clinic. The questionnaire will consist of 27 multiple choice/short answer and open ended questions and take around 20 minutes to complete. Where possible, both parents will complete a questionnaire.
REC name
North West - Greater Manchester East Research Ethics Committee
REC reference
14/NW/0274
Date of REC Opinion
6 May 2014
REC opinion
Further Information Favourable Opinion