Epilepsia, estigma e inclusão social/escolar: reflexões a partir de estudos de casos

Abstract

Epilepsy represents the most common chronic cerebral disorder in infancy, which usually appears during the first ten years of life. Stigma and prejudice regarding epilepsy are understood as promoting exclusion attitudes, which can even restrict children's entrance in regular schools. The aim of this study was to investigate, through a qualitative research, how teachers and parents conceive and refer to a child with epilepsy and his/her school education; and, how those children conceive their experiences. Three children with epilepsy, between ten and eleven years old were investigated. One of them was attending a special school; a second, a special class; and third child was attending a regular class. The participant's selection was made among children who were attended in a specialized ambulatory. Empirical data was obtained by semi-structured interviews with teachers and families; interviews with play activities were carried out with children. Paulo and Gabriel (assumed names) are ten years old, Isael is eleven. Paulo and Isael had their crisis controlled when they were two and eight years old, respectively. Gabriel still has seizures. Paulo attended a special school since two years old and was sent to a regular class at 5-8 y.o., then went back to a special school. Gabriel attends a special class since he was two years old. Nowadays, the city where he lives has grouped all the special classes in a same building. Isael began attending a regular class when he was eight, when his seizures ceased after surgical treatment. Data collection and analysis were conducted based on the Network of Meanings perspective. Analysis of parents and educational professionals was conducted through the construction of thematic fields: attributed meanings regarding epileptic seizures; school trajectory; stigmatization of child; future perspectives, among others. Limitations are imposed to the children due to crises, there are less restrictions after the crises cease, in the three cases. Analysis of children's interviews did not reveal many meanings related to be a child with epilepsy. They refer more frequently to questions related to their educational environment and experiences. In those three cases, the crises were not highlighted. In Paulo's case, the stigma seems to come from attendance to a special school and from his learning disabilities. In Gabriel's case, the stigma seems more related to his behavior and cognitive difficulties. In Isael's case, the stigmatization is linked to two paradoxical aspects: his learning disabilities and God's will. In themes related to school, the learning disabilities are predominantly highlighted, both by families and schools. But there is no consensus that those difficulties derive from the crises. We showed that those children's school trajectory is marked by exclusion; yet, the schools did not demonstrate interest/know-how to receive/accept them. Furthermore, the city educational system was determinant for the children's school trajectory. We conclude that we must consider the social contradi...

Prevalência dos fatores instrínsecos e extrínsecos do processo de aprendizagem em crianças com epilepsia

“…This result is possibly due to the fact that most respondents had low income, however, it is known that because of the stigma and prejudice, the diagnosis of epilepsy favors attitudes of exclusion, including restricting participation in regular schools 14 . In addition, it is also noticed that schools, in general, do not demonstrate aptitude / interest in dealing with children with epilepsy, although in many cases epilepsy is neither limiting nor disabling, because of the social group stigma, these children are placed inadvertently…”

“…The higher prevalence of age found in this study can be justified because epilepsy is the most common chronic brain disorder in childhood, being more frequent in the first ten years, meaning that children are affected on the beginning of their school life. 14 …”

“…In a study with epileptic children, it was found that 16 children (21%) had no other health problems, while 40 (79%) had other chronic diseases, neurological or behavioral problems and learning disabilities or combinations of various conditions. Importantly, children with epilepsy are particularly vulnerable to in special education (special schools or special classes), on the understanding that they have special educational needs 14 . A study 25 investigated the prevalence of using special education services for children with epilepsy and found, as a result, epilepsy frequency 30 times higher in children attending special schools or special classes within regular schools than students in regular schools.…”

“…Children with epilepsy may be subject to attitudes of social rejection, marked by the stigma and ignorance about epilepsy. These attitudes often occur in their own familiar environment and in healthcare, with restrictions on participating in activities for children without epilepsy, such as school attendance itself 14 .…”

“…It was found in a longitudinal 24 study, which followed 613 children over five years after receiving the epilepsy diagnosis, that 525 (85%) were in school and that these 315 (60%) had used some kind of service related to special education and special classes in regular or resource rooms or attending special schools. A case study 14 at the time of subjects-participants selection found that 35% of children with epilepsy were not attending to any school environment. However, it's important to mention that these children were included in those with higher degree of impairment (absence of verbal language and delayed motor development).…”