Rede de apoio à criança e ao adolescente com hemofilia: a integração saúde/escola
Data
2018-04-25
Autores
Raposo, Renata Nunes 
Orientadores
Ferreira, Beatriz Jansen
Tipo
Dissertação de mestrado
Título da Revista
ISSN da Revista
Título de Volume
Resumo
A Hemofilia é um distúrbio de coagulação do sangue. Importantes aspectos
psicossociais perpassam por todos os ciclos de vida do hemofílico e sua família,
dentre eles a inserção na vida escolar. Esta pesquisa pautou-se na perspectiva de
análise da escola inclusiva enquanto rede de apoio para a criança/adolescente
hemofílica. O contexto da pesquisa se deu nas escolas do município de São Paulo e
Grande São Paulo catalogadas pelo Serviço de Hemofilia do Hospital São Paulo
(HSP) e o público-alvo foi composto por gestores, professores e familiares dos
usuários. A pesquisa teve o desenho qualitativo, com caráter exploratório e
descritivo. Para a coleta de dados foram utilizadas entrevistas individuais
semiestruturadas, sendo tratadas pela Análise de Conteúdo na modalidade temática.
Foram construídos três eixos: desafios da escola enquanto rede de apoio para a
criança/adolescente com hemofilia, ações intersetoriais e outras estratégias
fortalecedoras para a escola enquanto rede de apoio para a criança/adolescente
com hemofilia e a centralidade do conhecimento sobre a doença na perspectiva do
acolhimento e inclusão da criança/adolescente com hemofilia, que evidenciaram a
família como principal fonte de informação sobre hemofilia, a falta de integração
entre os atores da escola, o não reconhecimento da escola enquanto integrante
ativa da rede de apoio, assim como as dificuldades de inclusão de uma doença com
baixa prevalência e suas marcas, tais como: desinformação, medo e superproteção.
Evidenciou-se também a falta de integração entre o Serviço de Hemofilia e Outras
Coagulopatias Hereditárias do HSP e as escolas por ele atendidas e a inexistência
de ações intersetoriais entre Secretaria de Educação e Saúde.
Hemophilia is a blood clotting disorder. Important psychosocial aspects permeate all hemophiliac and their families’ life cycles, including the insertion into school life. This research was based on the perspective of an analysis of inclusive school as a support network for the hemophilic child/adolescent. The context of the research was of the schools of São Paulo and Great São Paulo area, cataloged by the Hemophilia Service of Hospital São Paulo (HSP), and the target audience was composed of managers, teachers and family members. The research had the qualitative design, with an exploratory and descriptive character. For the data collection, semi-structured individual interviews were used, being treated by Content Analysis in the thematic modality. Three axes were constructed: school challenges as a support network for the child/adolescent with hemophilia, intersectoral actions and other strategies to strengthen the school as a support network for the child/adolescent with hemophilia and the centrality of knowledge concerning the disease in perspective of the hosting and inclusion of the child/adolescent with hemophilia, which evidenced the family as the main source of information regarding hemophilia, the lack of integration among the school actors, the non-acknowledgment of the school as an active member of the support network, as well as the difficulties of including a disease with low prevalence and its impacts, such as: misinformation, fear and overprotection. There was also evidence of a lack of integration between the Hemophilia Service and Other Hereditary Coagulopathies of the HSP and the schools it serves and the inexistence of intersection actions between the Education and the Healthcare Secretariats.
Hemophilia is a blood clotting disorder. Important psychosocial aspects permeate all hemophiliac and their families’ life cycles, including the insertion into school life. This research was based on the perspective of an analysis of inclusive school as a support network for the hemophilic child/adolescent. The context of the research was of the schools of São Paulo and Great São Paulo area, cataloged by the Hemophilia Service of Hospital São Paulo (HSP), and the target audience was composed of managers, teachers and family members. The research had the qualitative design, with an exploratory and descriptive character. For the data collection, semi-structured individual interviews were used, being treated by Content Analysis in the thematic modality. Three axes were constructed: school challenges as a support network for the child/adolescent with hemophilia, intersectoral actions and other strategies to strengthen the school as a support network for the child/adolescent with hemophilia and the centrality of knowledge concerning the disease in perspective of the hosting and inclusion of the child/adolescent with hemophilia, which evidenced the family as the main source of information regarding hemophilia, the lack of integration among the school actors, the non-acknowledgment of the school as an active member of the support network, as well as the difficulties of including a disease with low prevalence and its impacts, such as: misinformation, fear and overprotection. There was also evidence of a lack of integration between the Hemophilia Service and Other Hereditary Coagulopathies of the HSP and the schools it serves and the inexistence of intersection actions between the Education and the Healthcare Secretariats.
Descrição
Citação
CUNHA, Renata Raposo Rede de apoio à criança e ao adolescente com hemofilia: a integração saúde/escola. 2018. 166 f. Dissertação (Mestrado Profissional) - Escola Paulista de Medicina, Universidade Federal de São Paulo, São Paulo, 2018.