Jen Balfe, a researcher in the RCSI University of Medicine and Health Sciences, mother of two and a person with Cystic Fibrosis (pwCF) was awarded a grant by the Irish Research Council in conjunction with Cystic Fibrosis Ireland for a project called ‘Exploring the experiences of people with Cystic Fibrosis and the healthcare professionals involved in their care during the pre-conception to post-partum period’. 

Since the introduction of Highly Effective Modulator Therapies like Kalydeco and Kaftrio, pwCF have been experiencing a greater quality of life, fewer exacerbations and pregnancy rates in women with CF have increased. The rising numbers of pwCF becoming pregnant has highlighted the need for more information and resources to help pwCF and their healthcare teams as they navigate a pregnancy journey. 

Whilst studies in the area of pregnancy and fertility with CF have increased internationally, there is a lack of data as to how pwCF experience a pregnancy journey whilst living in Ireland. In fact we know very little about how pwCF experience accessing and utilising fertility and pregnancy services in Ireland and very little about how the healthcare teams involved in their care experience delivering care to pwCF during this time. This is the first study of its kind in Ireland which seeks to examine the enablers and barriers to care for pwCF and their teams. 

Jen and her team are interested in finding out what people with CF and their teams think and experience when on a pregnancy journey/providing care to a pwCF on a pregnancy journey. 

Any person with CF (greater than 18 years) who has accessed fertility/maternity services in Ireland in the last 10 years or any healthcare professional with recent experience of providing care to pwCF during the pre-conception to post-partum period can participate in the study. 

What will the study involve: 

• An introductory call/email to introduce the study and arrange a suitable time for an interview 
• To ensure the safety of participants with CF and adhere to cross infection guidelines, interviews with pwCF will all take place online. Where possible interviews with healthcare professionals will also take place online. 
• People with CF will be given the opportunity to prepare/brainstorm their interview by completing a short ‘timeline’ at home in advance of the interview. This is to assist in the preparation for the interview and is entirely optional. Timelines have been shown to help memory recall and prepare the participant for discussing a topic. 
• This initial interview will inform future surveys and analysis of the experience of pwCF and their healthcare teams and will also help in the future creation of resources for pwCF in Ireland and beyond. 

If you are interested in sharing your experiences and wish to get involved please click on the link below to register your interest.

Alternatively you can contact Jen by email at jenbalfe21@rcsi.ie or via twitter @CFExpectations.