Family Experiences of Cystic Fibrosis
Research type
Research Study
Full title
What are the experiences of families in managing the dynamics around cystic fibrosis? - A qualitative photo elicitation study
IRAS ID
333858
Contact name
Rosalind Hatton
Contact email
Sponsor organisation
University of Leeds
Clinicaltrials.gov Identifier
N/A, N/A
Duration of Study in the UK
1 years, 6 months, 12 days
Research summary
This research is a single centre study based at a regional paediatric CF centre in a teaching hospital within Yorkshire, and will be a qualitative study taking approximately 12 months to complete. This research will focus on families with a child with cystic fibrosis and will explore the effect cystic fibrosis has on the whole family. Cystic fibrosis (CF) is a life-limiting condition, which often requires lengthy daily treatment routines (Gathercole, 2019). The treatment landscape of CF has changed significantly in recent years with the development of modulator drugs (De Boeck, 2020). This has likely greatly impacted on the whole family. Moreover, whilst some research has looked at the effect cystic fibrosis has on individuals, the researchers are not aware of any study looking at the family unit. To be able to offer the right support and resources, it is important to understand the impact that cystic fibrosis has on families. This study aims to recruit 3-5 families to explore this. Participants can decide which family members take part as all families are different. We will ask that at least 2 family members participate, with one of them being the child with CF. Previous research has demonstrated the usefulness of techniques such as photo elicitation – where participants choose photos to share – in opening up conversation, and we will adapt that for this study. We will ask each family member involved in the interview to prepare at least two creative items (e.g. photos / pictures / stories) that show how cystic fibrosis effects them. The family can also do this together. We will then meet with the family as a whole to discuss the creative items together. The interviews will be audio-recorded, transcribed and analysed using Interpretative Phenomenological Analysis, a popular method of analysing qualitative data that is suitable for analysing our interviews.
REC name
North East - Newcastle & North Tyneside 2 Research Ethics Committee
REC reference
24/NE/0016
Date of REC Opinion
13 Feb 2024
REC opinion
Further Information Favourable Opinion