Influence of schooling on the health-related quality of life of children with rare diseases

BACKGROUND: Although participation of children with rare diseases in school is considered beneficial, it poses new challenges for the educational system, but also for the affected children and their families. The aim of this study is to identify which aspects of the schooling experience may have an impact on the health-related quality of life of children with rare diseases. METHOD: A qualitative study was conducted using the social-critical paradigm as theoretical perspective. Participants (n = 28) included children with rare diseases (n = 8), parents (n = 12) and school staff (n = 8). Data was obtained through in-depth interviews and focus groups and analysed through discourse analysis as methodological orientation. RESULTS: Participants’ discourses placed value on the social benefits of inclusion of children with rare diseases in schooling. Discourses also highlighted how the low numbers of children with rare diseases and the delay, or lack, of a clear diagnosis are among the difficulties experienced in the pursuit of the adaptations that children and teachers need to promote a healthy and normalized school experience. The issues identified in their health-related quality of life were summarized in seven categories: Attendance, Knowledge, Participation, Acceptance, Discrimination, Safety, Health-Related Support. CONCLUSION: Children with rare diseases remain, in many cases, invisible at the educational level due to the low numbers of children affected, limiting the kind of resources available to the child and teaching staff. This situation requires inter-disciplinary and inter-sector measures between health services and educational environments to articulate a comprehensive approach focused on children’s clinical needs.