What is the purpose of this study?
We know that Ireland has the highest rate of cystic fibrosis per capita in the world (Cystic Fibrosis Ireland, n.d.) and it is estimated 1 in 19 people carry the gene for cystic fibrosis in Ireland (HSE n.d.).
Many studies have been carried out that look into areas such as exercise and diet. There are limited studies looking into the effects of CF on daily life for adults with CF and for those on CF modulators or not. There is also limited research comparing the lived experience, daily life, and one’s activities between people on modulator therapies and those not. No study (that we are aware of) has looked at this topic in the Irish context.
Who is organising and funding this study?
This study is a project being completed by Kelli Murphy as part of her final year project (thesis) and is supervised by Dr. Sinead Hynes. The study is supported by the University of Galway and CF Ireland.
Why am I being asked to take part?
You have been asked to take part because you can share vital information about your experience with cystic fibrosis in your everyday life e.g., building relationships, travelling, developing a career, socialising, etc., and how you manage these challenges.
You can take part in this study if you are:
- Over the age of eighteen.
- Have a cystic fibrosis diagnosis
What can I expect if I agree to take part?
An interview either in-person (tutorial rooms in Áras Moyola building on the University of Galway campus will be available for booking), via videocall e.g., Zoom, Microsoft Teams or phone if needed. The interview will take approximately 30-45 minutes, depending on how different topics are discussed during the interview.
Where can I get further information?
If you would like to take part in this study, please download and read the full Information Leaflet below. If you have any further questions about the study or if you want to opt out of the study, you can rest assured it won't affect the quality of treatment you get in the future.
If you need any further information now or at any time in the future, please contact:
Name: Kelli Murphy
Academic Supervisor: Dr. Sinéad Hynes
Address: Áras Moyola, University of Galway, Upper Newcastle Road
Phone No: 091495624