Education and employment: the beliefs, aspirations and experiences of young people with cystic fibrosis: a qualitative study

This research explores the educational and employment experiences of young people with Cystic Fibrosis (CF) and was carried out as two separate studies. Study one consists of a small-scale survey examining the educational and employment history of 162 patients attending the Leeds regional Adult CF centre. Analysis of the data was conducted using non-parametric (Spearman‟s) correlations, t-tests and logistic regressions. Study two consists of qualitative analysis of interviews with six young people with CF discussing educational and employment experiences and their understanding of the factors that influenced the development and attainment of aspirations. Using Grounded Theory (GT) methodology, an overall theoretical model of participants‟ experiences has been developed, providing some speculations as to why many do not fulfil their potential.

Study one found the educational attainment and employment of people with CF to be lower than those in the general population (OECD, 2011; 2008). Socioeconomic status was the factor most predictive of school leaving age, educational attainment at degree level and perceived impact of CF on education and career and disease severity and educational level the factors most predictive of employment. Findings from study two revealed several themes: physical and practical consequences of CF and in some cases the actions of others, illustrated many practical and prejudicial barriers that prevented many from attaining their educational and occupational aspirations. The reality of struggles to achieve and maintain educational and occupational performance because of CF, and worries about their health and life expectancy had a significant impact on self-belief and belief in educational and workplace providers. This lowered expectations of achieving educational and occupational success, resulting in a withdrawal from aspirations and subsequent educational and occupational attainment. It is hoped that the findings of this study will contribute to the wider CF literature and that of other chronic illnesses and disability.