Children with medical conditions may experience significant challenges in education, of which there is often low awareness within schools. Yet, there is a dearth of research into cystic fibrosis (CF) and education. Research about CF commonly takes a medicalised or psychological standpoint and therefore the educational experiences of children and young people with condition are largely unknown. Educational research has focused on children with varying medical conditions, although most studies regard them as a homogenous group. CF remains distinctive from other conditions because it is invisible, it has an erratic profile, and a vast regime of treatments are needed in order to manage symptoms on a daily basis.
The impact of CF upon the educational experiences of children and young people with the condition is a neglected research area. The study has begun to address this research gap. As an adult who has CF, this cross-disciplinary education and health study benefitted from an ‘insider’ research approach, which exemplifies the value of experiential knowledge. The research employed a two-phased, mixed methods design and drew upon an ecological, biopsychosocial approach to take account of the interacting systems in which children participate. First, questionnaires were administered to 75 school-aged individuals with CF at a large regional paediatric CF centre. Second, online interviews took place with 5 children and young people, and telephone or face-to-face interviews were conducted with parents, teachers and CF nurse specialists.
The findings demonstrated that children’s needs are obscured in the school setting and they often experience low teacher awareness and understanding of the condition. Subsequently, children and young people may be subjected to vulnerable educational circumstances. The research informs developments in the education of children and young people with CF through the identification of their specific needs and challenges, and recommendations for educationally supportive practice.
