Understanding CF and you

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Researchers need your help to understand how cystic fibrosis can impact individuals, the family and everyday life, and the support that’s missing that could make a difference.

The study, funded by the Cystic Fibrosis Trust, is designed to help researchers learn more about what life is like for people with CF and their families, part of a wider project exploring the interaction between mental health and physical health.

Based at the UCL Great Ormand Street Institute of Child Health, the team is looking for people with CF age 11 years and over, as well as siblings and parents, to talk about how CF can affect areas such as school or work, family life and mental health, among others.

Susan Moore, Interim Head of Information and Support at the Cystic Fibrosis Trust said: “We know that CF is a complex condition, and that it can impact life in a wide variety of ways. This study will help us better understand how we can adapt the resources and services we offer to support our community, and make a life unlimited by cystic fibrosis possible.”

Mhairi McKenzie, a PhD student on the team, said: “This research will help to make the voices of those with cystic fibrosis and their families heard. We hope that this research will help to make the impact of cystic fibrosis on the whole family clearer, and inspire the development of support services which match the needs of individuals from their perspective.”

The qualitative study takes the form of a short questionnaire followed by a longer interview by phone, skype or in person, to explore the needs, challenges and aspirations of those affected by cystic fibrosis.

Help with this research

If you want to get involved, or have any questions, contact the team at ICH.CFstudy@ucl.ac.uk, or phone 07756 339965. If you take part you will receive a £10 Amazon voucher for your time, and travel expenses if you choose to do it in person.

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