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.
['Paz-Lourido|Berta|B|', 'Negre|Francisca|F|', 'de la Iglesia|Begoña|B|', 'Verger|Sebastià|S|']
D002648:Child D004493:Education D005260:Female D017144:Focus Groups D006304:Health Status D006801:Humans D007407:Interviews as Topic D008297:Male D010290:Parents D036301:Qualitative Research D011788:Quality of Life D035583:Rare Diseases D000070777:School Teachers D012574:Schools D063508:Social Discrimination D013030:Spain
Quality of life Children Rare diseases School aged population