Parental Experiences of CFTR Medication
Research type
Research Study
Full title
Parent’s experiences of their child starting Cystic Fibrosis transmembrane conductance regulator (CFTR) modulator therapy
IRAS ID
321325
Contact name
Hannah Edwards
Contact email
Sponsor organisation
University of East Anglia
Duration of Study in the UK
1 years, 2 months, 28 days
Research summary
Cystic Fibrosis (CF) is a life limiting genetic condition, which affects approximately 10,800 people in the United Kingdom. People with CF struggle with a range of difficulties including reduced lung function and difficulties absorbing nutrients from food. Treatment for CF has traditionally been invasive and time consuming. Parents of children with CF quickly become experts in the care of their children and work closely with the multi-disciplinary CF team to support their child’s health and wellbeing. Parents of children with CF are known to experience high levels of stress as well as high levels of anxiety and depression.
A new tablet-based treatment called Cystic Fibrosis transmembrane conductance regulator (CFTR) modulator therapy has been made available on the NHS. This treatment targets the cause of CF symptoms and although it is not a cure, is expected to revolutionise the lives of people with CF. Large research studies looking into how well CFTR modulator therapy works have already found it to improve the physical health of people with CF.
This qualitative study aims to explore what it is like for parents of a child with CF to start this medication. We hope that by focusing on the parents we can explore the impact of the medication on more than the physical health of the child and in doing so understand how they can be best supported.
Eight to 10 parents of children with CF will be invited to take part in interviews about their experiences. These interviews will be recorded and then transcribed so they can be analysed.
Analysis will focus on parent's journey to getting and starting this medication and how they made sense of this. The study’s findings will be written up in a report and used for an information booklet for other parents who are starting this same journey.
REC name
HSC REC A
REC reference
23/NI/0020
Date of REC Opinion
16 Mar 2023
REC opinion
Further Information Favourable Opinion