Rebecca Long, a Masters student in Carlow IT, is writing her thesis for an MA in Child, Youth & Family Studies, and is looking at the realities of living with Cystic Fibrosis in Ireland for children and young people. Rebecca wants to develop creative resources and supports that will empower this age group to tell their story and to better understand how C.F. impacts on their lives.

Rebecca would like to know more about the day to day lives of families living with experiences of C.F. in Ireland. To do this she has come up with a series of surveys;

• The first is for adults who support children and young people living with C.F. in a family context.
• There is a survey for children aged between 10 and 14 living with C.F.
• A third is for teenagers aged between 15 and 18 living with C.F.
• The fourth survey is for children aged between 10 and 14 who has a sibling or siblings living with C.F.
• And the final survey is for teenagers aged between 15 and 18 who has a sibling or siblings living with C.F.

In addition to the surveys Rebecca is also holding some online focus group sessions to give people who want to participate a chance to talk about their experiences. One session is for parents and guardians, another for children aged between 10 and 14 (with parental supervision and permission), and the final session is for teenagers aged between 15 and 18 (also with parental permission).

Speaking about her research, Rebecca says;

"C.F. is a well-researched condition, but I feel that there’s a gap when it comes to hearing the voices of children and young people living with C.F., and their families, in that research. I hope my thesis project starts to fill this gap."

Recruitment for this project is now closed, thank you to everyone who expressed an interest in taking part.

CFI will share results of the research when complete. 

Further information on the research is available below