Crianças com distrofia muscular na educação infantil: experiências e desafios
Arquivos
Data
2021-10-27
Autores
Oliveira, Fabiana Aparecida de [UNIFESP]
Orientadores
Carvalho, Maria de Fátima [UNIFESP]
Tipo
Tese de doutorado
Título da Revista
ISSN da Revista
Título de Volume
Resumo
Esta pesquisa situa-se no campo dos estudos sobre a inclusão de crianças com deficiência e doença crônica na educação infantil. Nesse sentido, almeja identificar e compreender desafios e experiências relacionados à presença de crianças com distrofia muscular congênita nessa etapa na educação básica. Assume, para tanto, como referencial teórico-metodológico, a psicologia histórico-cultural, com destaque para as contribuições de Vigotski centradas, sobretudo, na gênese social do desenvolvimento humano, no papel dos contextos educacionais e das interações estabelecidas em seu interior como fonte privilegiada para a promoção de aprendizagem e desenvolvimento de todas as crianças. A pesquisa contempla uma revisão da literatura nacional sobre a temática distrofia muscular, empreendida tanto na esfera da saúde, buscando colocar em evidência suas principais características e sintomas, bem como no campo da educação, revelando um cenário de escassa produção sobre esse assunto. Em seu cerne, conta com uma imersão em campo, mais precisamente em uma escola pública situada na cidade de Guarulhos, centrada em observação participante junto a um grupo do Estágio II, onde está matriculada uma criança de 5 anos com distrofia muscular congênita e deficiência física. A análise dos dados selecionados aponta para a ausência de investigações sobre crianças com distrofia muscular na educação infantil, pontua, como desafios, a partir da imersão em campo, a ausência de recursos de acessibilidade que permitam que a criança usufrua plenamente de todos os ambientes escolares, colocando em evidência o contexto de precariedade em que as crianças público-alvo da educação especial são recebidas na educação infantil. No campo das experiências, ao analisar as relações, interações e mediações ali estabelecidas, nas quais assumimos uma dimensão partícipe, destacam-se o papel do professor como agente organizador daquele meio e central para a ampliação efetiva das possibilidades de participação dessas crianças, aspectos que coadunam com a potencialização e emergência de sua aprendizagem e desenvolvimento. A investigação aponta, também, para a necessidade de políticas públicas que oportunizem condições concretas de acessibilidade, bem como possibilitem a ampliação da formação inicial e continuada de educadores em um perspectiva de educação inclusiva.
ABSTRACT This research is in the studies field about the children inclusion with disabilities and chronic illness in early childhood education. Thus, it aims to identify and comprehend challenges and experiences related to children with congenital muscular dystrophy in basic schooling education. It assumes, therefore, as a theoretical-methodological framework, the cultural-historical psychology, with emphasis on Vigotski’s contributions centered, above all, by the social genesis of human development, in the role of educational contexts and interactions established within them as the privileged to source for the promotion of learning and all children's development. This research includes a national literature review about muscular dystrophy theme, undertaken both in the health sphere, to highlight its main characteristics and symptoms, just as in the education area, revealing a scarce production scenario about this subject. Besides, it has immersion in the field, more precisely in a public school located in the Guarulhos city, focused on participant observation with a II Stage group, where a 5-year-old child with congenital muscular dystrophy and physical disability is enrolled. Selected data analysis points to a lack of investigation about children with muscular dystrophy in early childhood education, showing as challenges, from field immersion, deprivation accessibility resources for a child to fully enjoy all school environments, highlighting the precarious context in which children target, audience from special education, are received in early childhood education. In the experiences field, analyzing relationships, interactions, and established mediations, in which we assume a participative dimension, we stand out the role educator as an organizing agent in this environment and central effective expansion of this child's participation possibilities, aspects that fit together with the enhancement and urgency from their learning and development. The investigation also points to the need for public policies that provide concrete conditions for accessibility, as well as enable the expansion of initial and continuing education for educators in an inclusive education perspective.
ABSTRACT This research is in the studies field about the children inclusion with disabilities and chronic illness in early childhood education. Thus, it aims to identify and comprehend challenges and experiences related to children with congenital muscular dystrophy in basic schooling education. It assumes, therefore, as a theoretical-methodological framework, the cultural-historical psychology, with emphasis on Vigotski’s contributions centered, above all, by the social genesis of human development, in the role of educational contexts and interactions established within them as the privileged to source for the promotion of learning and all children's development. This research includes a national literature review about muscular dystrophy theme, undertaken both in the health sphere, to highlight its main characteristics and symptoms, just as in the education area, revealing a scarce production scenario about this subject. Besides, it has immersion in the field, more precisely in a public school located in the Guarulhos city, focused on participant observation with a II Stage group, where a 5-year-old child with congenital muscular dystrophy and physical disability is enrolled. Selected data analysis points to a lack of investigation about children with muscular dystrophy in early childhood education, showing as challenges, from field immersion, deprivation accessibility resources for a child to fully enjoy all school environments, highlighting the precarious context in which children target, audience from special education, are received in early childhood education. In the experiences field, analyzing relationships, interactions, and established mediations, in which we assume a participative dimension, we stand out the role educator as an organizing agent in this environment and central effective expansion of this child's participation possibilities, aspects that fit together with the enhancement and urgency from their learning and development. The investigation also points to the need for public policies that provide concrete conditions for accessibility, as well as enable the expansion of initial and continuing education for educators in an inclusive education perspective.
Descrição
Citação
OLIVEIRA, Fabiana Aparecida de Melo. Crianças com distrofia muscular na educação infantil: experiências e desafios. 2021. Tese (Doutorado) - Programa de Pós Graduação em Educação e Saúde na Infância e na Adolescência. Universidade Federal de São Paulo - UNIFESP, Guarulhos, 2021