Managing cystic fibrosis alongside children’s schooling: Family, nurse and teacher perspectives

Abstract

The treatment regimen for children with cystic fibrosis (CF) is vast and is usually undertaken in the family home. Managing CF coincides with other important family routines such as children’s participation in education. There is a dearth of research that considers family routines that may influence, and be influenced by how CF is managed. To address this gap, this patient-led study examined how families manage CF alongside children’s education in England. Semi-structured interviews were conducted with 14 participants comprising 5 children and young people with CF, 4 parents, 2 CF nurse specialists and 3 teachers. The results revealed that CF routines were organized to minimize disruption to education, although families experienced challenges in meeting all daily health and education demands. Families chose between children doing their treatments or participating in school activities when doing both were not feasible. Treatments were sometimes a barrier to education participation and children’s learning. Families found treatment routines restrictive upon children’s friendships. Education is a priority for families, which affects how they manage CF. CF clinical teams should consider bidirectional influences between important family routines and families’ management of CF, when planning appropriate treatment regimens.