Pérez de Villarreal Zufiaurre, Maider
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Pérez de Villarreal Zufiaurre
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Maider
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Ciencias
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I-COMMUNITAS. Institute for Advanced Social Research
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Publication Open Access Well-being in students affected by rare diseases: a didactic proposal of inclusion(Future Academy, 2019) Pérez de Villarreal Zufiaurre, Maider; Ciencias; ZientziakRare diseases (RD) or less frequent diseases affect at least 5 of 10.000 inhabitants. Due to the many disabling conditions, such as long lasting diagnostic procedures or the need of several medical treatments affecting some RD affected children in school age, they usually miss classes and need curricular adaptations. According to data from the INE, there might be 38.000 people RD affected in Navarre and 1300 disabled children, from which at least 372 children in school age could be RD affected. Schools should have the mechanisms to identify these students, as a great part would have special educational needs, derived in some cases of cognitive deficiencies, but in others, of absences forced by treatments and medical operations. Some of them also suffer from the ignorance and bullying of their peers, who scarcely understand their complicated daily routine accomplishment and the incomprehension of their teachers. The use of Cmap Tools software, together with a planned intervention based in Positive Psychology in each school from Navarre, attended by one or more RD affected child, is proposed in this article, for the creation of a Knowledge Model based on the specific RDs affecting children in Navarre. This way, a RD based Knowledge Model net could be built (regional, national and international), together with affected and non-affected students. The net would provide meaningful knowledge and could be useful for any school attended by other children suffering the same disease in Spain or other European countries, specifying the educational needs a child affected by that RD can have throughout the different educational levels. This could become a powerful international tool for normalizing RD and including affected students in the educational field, creating inclusive schools, and therefore spreading the knowledge to the social field.Publication Open Access Design of rare disease based knowledge model net (RDKMN) in schools attended by affected students, as an inclusive and didactic tool(Horizon Research Publishing, 2018) Pérez de Villarreal Zufiaurre, Maider; Psicología y Pedagogía; Psikologia eta PedagogiaRare diseases (RD) are those affecting at least 1 of 2.000 inhabitants. Many RD, induce disabling conditions and those school age affected children usually miss classes due to the complicated diagnostic procedures and the several medical treatments they need, thereafter. It is still unknown the exact number of students in this situation in Navarra (Spain), although according to data from the INE [16], there should be at least 1300 children with disabilities from which at least 372 children in school age could be RD affected. These students should be able to be identified in schools, as the vast majorities need help at some point, derived in some cases from cognitive deficiencies but in others, from their absence of classes due to health complications. Some Rare Disease Affected Students (RDAS) also suffer from bullying due to the ignorance of their peers or even teachers, towards their situation. In this paper, the use of Cmap Tools software, together with a planned intervention in each school from Navarre, attended by at least, one RDAS, is proposed for creating knowledge models based on the specific RD affecting children in Navarre. This way, a RD based Knowledge Model Net (RDKMN) could be built, together with affected and non affected students, and this meaningful knowledge could be useful for any school attended by children suffering the same disease in Spain or other European countries. This could become a powerful international inclusive and didactic tool, which could help normalizing RD and including RDAS in the educational field, creating inclusive schools, and therefore spreading the knowledge to the social field.