Cystic fibrosis diagnosis in adulthood: Patients’ views Version 1
Research type
Research Study
Full title
Cystic Fibrosis (CF) diagnosis in adulthood: patients’ views on their experiences and support needs.
IRAS ID
189640
Contact name
Nisha Sharma
Contact email
Sponsor organisation
University of the West of England
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
There is limited research exploring the phenomenon of receiving a diagnosis of cystic fibrosis (CF) as an adult within the UK population. Little is known about living with an adult CF diagnosis and how these patients are supported. By undertaking this research, it will begin to build a better understanding of patients' experiences of being diagnosed with CF in adulthood and living with a chronic condition. We can start to learn about if and how patients are currently supported and how they experience this support. This may help to build evidence or inform bigger studies around if different or further support is needed, what type of support patients could benefit from, and whether this would be acceptable for patients.
This study is part of a two-part programme of mixed methods research. The first study aims to explore the ongoing experiences of people diagnosed with cystic fibrosis (CF) in adulthood, to understand the impact the condition has on their lives and to identify what their support needs are. This will be achieved through a one off semi-structured interview with patients who have been clinically diagnosed with CF in adulthood and have been diagnosed for a minimum of a year.
The second study aims to explore the attitudes of healthcare professionals providing medical care for people diagnosed with CF in adulthood in the UK, to understand what it is like for them to care for this patient group and to find out what they think patients’ needs are. This will be achieved through completing a one off questionnaire using a mix of qualitative and quantitate type questions. The appropriate ethical approval for this study will be sought from the University of the West of England.
REC name
South Central - Hampshire B Research Ethics Committee
REC reference
15/SC/0567
Date of REC Opinion
10 Oct 2015
REC opinion
Favourable Opinion