Inclusion and equity in educational services for children with rare diseases: Challenges and opportunities

Abstract

• Children with rare diseases face particular problems in the schooling process. • Delay or lack of diagnosis and poor knowledge about their chronic condition are among them. • Educational services have to establish measures to ensure equity in schooling for these children. • Non-stereotyped training is needed to improve teaching, coordination and school organization. Inclusion of children with rare diseases in school poses challenges for the educational services, teachers and other school staff. This research aimed to identify these challenges based on information provided by children with rare diseases, families and school personnel. A qualitative study was conducted using the social-critical paradigm as theoretical perspective. This study included 43 participants. Data was obtained through in-depth interviews and focus groups and analysed with discourse analysis. A total of 10 categories were identified that influence a healthy, inclusive and equal education experience in school: Diagnosis, Official recognition, Accessibility, Absences, Coordination, Curricular adaptations, Homework, Autonomy, Personnel resources, Peer support. The provision of appropriate education and care is a complex process influenced by the health condition of the individual child, the level of empowerment of families, the availability of resources and the commitment of the school and health care providers. The delay or lack of a clear diagnosis is among the challenges to obtaining the adaptations required.