Experiences of receiving an adult diagnosis for Cystic Fibrosis (V1)
Research type
Research Study
Full title
Experiences of individuals who receive an adult diagnosis of Cystic Fibrosis: An Interpretative Phenomenological Analysis
IRAS ID
218536
Contact name
Elizabeth Oliver
Contact email
Sponsor organisation
University of Leicester
Duration of Study in the UK
1 years, 6 months, 28 days
Research summary
Experiences of individuals who receive an adult diagnosis of Cystic Fibrosis: An Interpretative Phenomenological Analysis
Cystic Fibrosis (CF) is a life-shortening, inherited disorder, which affects lung functioning, food absorption and, for some, fertility. Currently, no cure exists for CF and treatment involves intensive, time-consuming daily regimens, including physiotherapy, diet supplements, antibiotics and regular clinic visits.
Over 90% of individuals are diagnosed with CF by three months old but a small number are not diagnosed until adulthood. Coming to terms with a CF diagnosis, including the shortened life expectancy, which is currently around 47 years, and incorporating the daily treatments in to already established lives is very difficult. Many adults feel shock, fear and isolation, particularly as information and resources are often aimed at young children and parents rather than adults. There is a lack of research in to the psychological effects and needs of adults diagnosed with CF, which needs to be addressed to ensure adults are offered the support and information they need by services.
By interviewing between six and eight individuals who received a diagnosis of CF as an adult, this research aims to understand from their perspective what it was like to receive this diagnosis, the impact it had on their psychological wellbeing and the support they received around diagnosis. The interviews will be fully transcribed and analysed using Interpretative Phenomenological Analysis (IPA).
The research findings will be relevant to Clinical Psychologists and other professionals who work with individuals who receive an adult diagnosis of CF. The findings may be used to inform services about how to better support adults diagnosed with CF, to produce better resources for those individuals and overall to help improve the psychological wellbeing of adults diagnosed with CF.
This research is funded by the University of Leicester and undertaken by a Trainee Clinical Psychologist.
REC name
South Central - Berkshire Research Ethics Committee
REC reference
17/SC/0119
Date of REC Opinion
7 Mar 2017
REC opinion
Favourable Opinion