Faculty of Education, Social Sciences and Law

School of Education

Research Student: Katie Gathercole

Photo of Katie Gathercole

The educational experiences of children and young people with Cystic Fibrosis (CF).

Submission Date: September 2015

Cystic Fibrosis (CF) is an inherited condition that predominantly affects the lungs and digestive system. Symptoms include repeated chest infections and problems with the digestion and absorption of food. People with CF must complete a range of significantly time consuming therapies and treatments on a daily basis in order to manage the condition. Therefore, the experiences of children with CF in relation to their schooling are of major interest to this research.

The rationale for the study stems from knowledge that children with medical needs have an increased likelihood of experiencing certain difficulties in education. There is a paucity of educational research into CF specifically and recently it has also been recoginised that there is a lack of social research into CF issues. Consequently, the educational experiences of children and young people with the condition are largely unknown.

Given that CF has a spectrum of severity, this study does not assume that all children with CF have the same educational needs and experiences and recognises them as a heterogeneous group of individuals. Therefore, to enable a wide variety of perspectives to be explored, the study employs the use of a questionnaire with children of compulsory school age administered in one of the largest paediatric CF centres in the UK. In order to explore children’s experiences of education in more depth, interviews are also used with children, young people and other stakeholders involved in their care and schooling. The findings of the study will represent new information in a context of CF and education.


Following the completion of my undergraduate degree in 2000, I have gained a range of experience in working directly with children and their families in various settings, including mainstream schools, specialist provisions and local authority support services. The majority of these roles involved working with a number of different agencies to ensure that children were well supported and received their educational entitlement.

In 2009 I completed a MA in Special Educational Needs at the University of Leeds. After this I was awarded an ESRC studentship to pursue my PhD Research. Part of the studentship enabled me to study for the MSc in Educational Research Methods which I gained in 2012.

What motivated me to undertake PhD study?

As an adult with Cystic Fibrosis with a professional background in education I felt that I was well placed to conduct a study relating to the educational experiences of children with CF.

What makes me passionate about my subject?

The outlook for children with CF is more and more promising. Life expectancy is increasing year on year and with this, so should the achievements of those with the condition. However, we do not know if advancements in treatments are transferring positively to the achievements or aspirations of people with CF. I am passionate about education being a key to a positive future. For example, one study has shown educational attainment is a significant predictor of employment in individuals with CF, rather than the severity of the disease. However, we do not know what is happening in the education of children with the condition and I believe that to answer this question, the first place we should start is by asking children and young people with CF about their experiences.

What are my plans once I have completed my PhD?

Once I have completed my PhD I would like to focus on some key areas of interest within the results of the study and conduct further research within the area of CF and education.

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