Exploring experiences of young people with cystic fibrosis
Research type
Research Study
Full title
Exploring experiences of young people with cystic fibrosis: reproductive health conversations and shared decision-making
IRAS ID
364672
Contact name
Rhiannon Phillips
Contact email
Sponsor organisation
Cardiff Metropolitan University
Duration of Study in the UK
0 years, 6 months, 30 days
Research summary
Cystic Fibrosis is a genetic condition that affects the CFTR protein, which helps salt and water move in and out of cells. Changes to the CFTR protein causes an excess of mucus to be formed in the lungs, digestive system and other organs. The introduction of CFTR modulator therapies has improved health and life expectancy for people with Cystic Fibrosis (PwCF). Consequently, more PwCF are considering starting a family.
CF is associated with reproductive complications, due to physiological changes to the male reproductive system and potential female sub-fertility. Pregnancy and parenthood can be challenging for PwCF because of the potential for declining health, the effects of medications on pregnancy, and the challenges of caring for a baby. In addition, unplanned pregnancies can result in poorer outcomes. Therefore, individuals of reproductive potential with CF need to understand the possible implications of childbearing and be equipped to make informed choices regarding their reproductive health. Reproductive health decisions are complex and sensitive for this population and women have expressed a need for further support.
Both clinicians and PwCF have acknowledged the need for reproductive health conversations to start in adolescence. However, research into supporting reproductive health-related conversations between young people and healthcare providers has been largely conducted in the USA and therefore factors unique to the UK healthcare system are unknown. In addition, the transition between paediatric and adult healthcare services and the need to form relationships with new healthcare providers can be challenging for both young people and their caregivers.This study will explore the experiences of young people with CF (YpwCF) and parents of YPwCF in the UK regarding reproductive health conversations and reproductive health-related information needs of through this transitional period using qualitative interviews. Additionally, participants will be asked for their thoughts on a shared decision-making tool, MyVoice:CF.
REC name
London - Camden & Kings Cross Research Ethics Committee
REC reference
26/LO/0185
Date of REC Opinion
18 May 2026
REC opinion
Further Information Favourable Opinion