Experiences of People with Cystic Fibrosis and their Families
Research type
Research Study
Full title
Experiences of Living with Cystic Fibrosis; The impact on children, young people, adults and their families
IRAS ID
219455
Contact name
Roz Shafran
Contact email
Sponsor organisation
UCL Great Ormond Street Institute of Child Health
Duration of Study in the UK
2 years, 8 months, 1 days
Research summary
Cystic Fibrosis is a progressive, genetically inherited condition in which thick mucus builds up in the lungs, pancreas and other organs. This can cause persistent infections, lung damage and eventually organ failure. Despite recent advances in research, management of the condition involves complex, time consuming (2-4 hours a day) treatment. We will be investigating the impact of the condition and the extensive treatment required on various aspects of the lives of both the patients themselves, and their families.
Semi-structured interviews will be carried out with three different groups; young people with CF (11-25yrs), adults with CF (26yrs+) and siblings of patients with CF (11-25yrs). A self-completion questionnaire with a mix of closed and open questions will be given to parents of any individual with CF. Each participant will also be asked to complete a Quality of Life (QoL) measure. There will be 20 participants in each group.
We will address areas of limited research, such as the impact of CF on a younger patient’s educational achievement and school/university life, the experience of transitioning from child to adult care and the effects of having a sibling with CF. Once these populations are better understood, more useful and effective support services and interventions can be subsequently developed.
The majority of published studies on this topic focus on participants from one clinic, however, we aim to recruit from multiple locations across the UK. Participants will be recruited from Great Ormond Street Hospital (GOSH) and through CF Trust Clinics based at various NHS institutions. Once written informed consent has been given by the participant (and parent/guardian, depending on age), semi-structured interviews will be conducted, lasting a maximum of 1 hour. The qualitative interviews will then be transcribed verbatim and analysed using qualitative thematic analysis.
The research is being funded by the CF Trust.
REC name
London - Bromley Research Ethics Committee
REC reference
17/LO/0348
Date of REC Opinion
20 Apr 2017
REC opinion
Further Information Favourable Opinion