Experiences of young adult women who have Cystic Fibrosis
Research type
Research Study
Full title
A retrospective exploration of experiences of the developmental transitions to adulthood in young adult women who have Cystic Fibrosis.
IRAS ID
121157
Contact name
Emily Brown
Contact email
Sponsor organisation
Research & Governance Department, Oxford Health NHS Foundation Trust
Research summary
Advances in the diagnosis and treatment of Cystic Fibrosis have progressively increased; therefore more people are living through their adolescence and into their young adulthood than ever before. Adolescence is a period of great change physically, psychologically, socially and emotionally and this is particularly a time when gender differences in Cystic Fibrosis start to become apparent. The severity of Cystic Fibrosis can worsen during adolescence and research has shown that this starts earlier for females; currently in the UK males tend to outlive females with Cystic Fibrosis.
Studies have shown that men and women have different experiences of Cystic Fibrosis as they grow up. This research has mostly been carried out with both genders either during adolescence or young adulthood. However, research during the transitional period between these developmental phases has not been carried out. It is important to understand the experiences of the transition between adolescence and young adulthood and how this impacts upon, and is impacted by a chronic illness such as Cystic Fibrosis. As females experience different and more time-constrained difficulties than men do, it is also particularly important to understand how females experience these changes.
10-15 women between the ages of 20 and 30 with Cystic Fibrosis, will be recruited through two regional Cystic Fibrosis clinics. After seeking informed consent, participants will complete two short questionnaires and a semi-structured interview about their experiences of becoming young adults females with Cystic Fibrosis. Interviews will be analysed using interpretative phenomenological analysis.
This study aims to add to the literature and to highlight strengths and difficulties that women may face, which can be used to inform professionals who may be offering support to these women and to consider how to shape services going forward as improvements in treatment for Cystic Fibrosis continue to occur.
REC name
South Central - Oxford C Research Ethics Committee
REC reference
13/SC/0442
Date of REC Opinion
9 Oct 2013
REC opinion
Favourable Opinion