Cuidado à criança e ao adolescente com deficiência visual : experiência da família

Detalhes bibliográficos
Autor(a) principal: Barbieri, Mayara Caroline
Data de Publicação: 2016
Tipo de documento: Dissertação
Idioma: por
Título da fonte: Repositório Institucional da UFSCAR
Texto Completo: https://repositorio.ufscar.br/handle/ufscar/7757
Resumo: Visual impairment classification varies from low visual loss to total absence of vision. There are many alterations in the routine of children and teenagers who suffer with visual impairment, changing their independency, the way they do everyday activities and the relationship with other people, changing their family lives too. Based on this, we found the necessity and motivation to do this research, which aims to study the experiences of visual impaired children and teenagers. This is a qualitative and descriptive research conducted in two cities, with the Symbolic Interactionism as theoretical reference. In the city A, the identification of the families was done using the data supplied by the Secretaria Estadual de Educação do Estado de São Paulo (the official government institution for education in the state of Sao Paulo). In the city B, we obtained the data from an institution for people with visual impairment; eighteen families were interviewed, and the total number of participants was 61. Data were collected using semi-structured interviews, genogram and ecomap. They were recorded and conducted in their homes or in the institution; the research was approved by the University research ethics committee number: 1.034.350. The narrative analysis was used as the methodological reference to make the interpretation of the interviews and understand the trajectory of the families. For a better comprehension, the results were divided in themes, categories and subcategories and organized in three articles for the data analysis. The trajectory starts with the perception of the first signs of visual impairment and the surprise with the diagnosis. After, the families have to adapt their routines in order to facilitate patient’s life. Among the adaptations, there is the use of treatment resources, the necessity to adapt and accept the condition, to protect and to understand the limits to overprotection. The school environment was described as difficult and traumatic in the city A. The social support received by the family may not be characterized as social network, but as a social support. For the families who live in the city B, the support from a specialized organization was essential to deal with visual impairment. We may conclude that it is necessary the qualification of education and health professionals to modify the reality of these families. This research may support improvements in current public health policies and create new ones for the inclusion of visual impaired patients
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spelling Barbieri, Mayara CarolineDupas, Gisellehttp://lattes.cnpq.br/9461883918498554http://lattes.cnpq.br/46672295542537252016-10-10T18:33:34Z2016-10-10T18:33:34Z2016-02-15BARBIERI, Mayara Caroline. Cuidado à criança e ao adolescente com deficiência visual : experiência da família. 2016. Dissertação (Mestrado em Enfermagem) – Universidade Federal de São Carlos, São Carlos, 2016. Disponível em: https://repositorio.ufscar.br/handle/ufscar/7757.https://repositorio.ufscar.br/handle/ufscar/7757Visual impairment classification varies from low visual loss to total absence of vision. There are many alterations in the routine of children and teenagers who suffer with visual impairment, changing their independency, the way they do everyday activities and the relationship with other people, changing their family lives too. Based on this, we found the necessity and motivation to do this research, which aims to study the experiences of visual impaired children and teenagers. This is a qualitative and descriptive research conducted in two cities, with the Symbolic Interactionism as theoretical reference. In the city A, the identification of the families was done using the data supplied by the Secretaria Estadual de Educação do Estado de São Paulo (the official government institution for education in the state of Sao Paulo). In the city B, we obtained the data from an institution for people with visual impairment; eighteen families were interviewed, and the total number of participants was 61. Data were collected using semi-structured interviews, genogram and ecomap. They were recorded and conducted in their homes or in the institution; the research was approved by the University research ethics committee number: 1.034.350. The narrative analysis was used as the methodological reference to make the interpretation of the interviews and understand the trajectory of the families. For a better comprehension, the results were divided in themes, categories and subcategories and organized in three articles for the data analysis. The trajectory starts with the perception of the first signs of visual impairment and the surprise with the diagnosis. After, the families have to adapt their routines in order to facilitate patient’s life. Among the adaptations, there is the use of treatment resources, the necessity to adapt and accept the condition, to protect and to understand the limits to overprotection. The school environment was described as difficult and traumatic in the city A. The social support received by the family may not be characterized as social network, but as a social support. For the families who live in the city B, the support from a specialized organization was essential to deal with visual impairment. We may conclude that it is necessary the qualification of education and health professionals to modify the reality of these families. This research may support improvements in current public health policies and create new ones for the inclusion of visual impaired patientsA classificação da deficiência visual (DV) abrange desde a perda visual leve até a ausência total de visão. Inúmeras modificações ocorrem no cotidiano de crianças e adolescentes com DV, alterando a independência, a maneira como realizam as atividades de vida diária e até as interações estabelecidas com o outro. Essa realidade acarreta modificações na vida familiar. Assim, surgiu a necessidade e motivação para realizar essa pesquisa que objetivou apreender a experiência de famílias de crianças e adolescentes com deficiência visual. Pesquisa qualitativa e descritiva, realizada em dois municípios, que utilizou como referencial teórico o Interacionismo Simbólico. No município A, a identificação das famílias foi realizada a partir do cadastro das matrículas de crianças e adolescentes com DV fornecido pela Secretaria Estadual de Educação do Estado de São Paulo. Já no município B contatamos uma instituição que fornece apoio para as pessoas com DV. Entrevistouse 18 famílias, totalizando 61 participantes. A coleta de dados ocorreu por meio de entrevista semiestruturada e com a confecção do Genograma e Ecomapa; foram gravadas em áudio e realizadas no domicílio ou na instituição de apoio. A pesquisa foi aprovada pelo Comitê de Ética em Pesquisa sob o parecer número: 1.034.350. A análise de narrativa foi adotada como referencial metodológico para a interpretação das entrevistas e assim foi compreendida a trajetória vivenciada pelas famílias. Para a compreensão os resultados foram divididos em temas, categorias e subcategorias. Os resultados foram estruturados em três artigos científicos que representam a análise dos dados. A trajetória é iniciada com a percepção dos primeiro sinais da DV, e com a surpresa da revelação do diagnóstico. Essa notícia faz com que a família busque adaptações nas atividades diárias para que o cotidiano do membro com deficiência visual seja facilitado. Dentre as adaptações realizadas pela família esteve relacionada aos recursos de tratamento, a necessidade de aceitar a condição e respeitar as peculiaridades da pessoa com DV e a necessidade da família em supervisionar e buscar conhecer o limiar entre a proteção e superproteção. A relação e experiência no ambiente escolar também foram destacadas no município A como difíceis e traumáticas. O apoio social que a família acessa para sustentação frente a DV ainda não pode ser caracterizado como rede social, mas sim como apoio social advindo de algumas pessoas. Para as famílias residentes no município B o apoio exercido por uma instituição especializada foi essencial para enfrentarem e se instrumentalizarem frente a DV de seus membros. Assim, o estudo sinaliza que modificações nas práticas dos profissionais da saúde e da educação são necessárias para aprimorar a realidade dessas famílias. A pesquisa pode subsidiar a melhoria de políticas públicas já existentes e criar novas voltada para a melhoria da rede de apoio e da inclusão social das pessoas com DV.Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES)Fundação de Amparo à Pesquisa do Estado de São Paulo (FAPESP)porUniversidade Federal de São CarlosCâmpus São CarlosPrograma de Pós-Graduação em Enfermagem - PPGEnfUFSCarPessoas com deficiência visualCriança com deficiênciaBaixa visãoEnfermagem familiarRelações familiaresVisual impaired personsDisabled childrenVision, lowFamily nursingFamily relationsActivities of daily livingChronic diseaseCIENCIAS DA SAUDE::ENFERMAGEMCuidado à criança e ao adolescente com deficiência visual : experiência da famíliainfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/masterThesisOnlineinfo:eu-repo/semantics/openAccessreponame:Repositório Institucional da UFSCARinstname:Universidade Federal de São Carlos (UFSCAR)instacron:UFSCARORIGINALDissMCB.pdfDissMCB.pdfapplication/pdf2497670https://{{ getenv "DSPACE_HOST" "repositorio.ufscar.br" }}/bitstream/ufscar/7757/1/DissMCB.pdf4b1147172520363a23311ff22cdc5528MD51LICENSElicense.txtlicense.txttext/plain; charset=utf-81957https://{{ getenv "DSPACE_HOST" "repositorio.ufscar.br" }}/bitstream/ufscar/7757/2/license.txtae0398b6f8b235e40ad82cba6c50031dMD52TEXTDissMCB.pdf.txtDissMCB.pdf.txtExtracted texttext/plain346261https://{{ getenv "DSPACE_HOST" "repositorio.ufscar.br" }}/bitstream/ufscar/7757/3/DissMCB.pdf.txtd81ab0a8e7aa28fb5ceba91fd4d59d72MD53THUMBNAILDissMCB.pdf.jpgDissMCB.pdf.jpgIM Thumbnailimage/jpeg6103https://{{ getenv "DSPACE_HOST" "repositorio.ufscar.br" }}/bitstream/ufscar/7757/4/DissMCB.pdf.jpg8bd4394a4635c916b34e4c205c96c28eMD54ufscar/77572019-09-11 02:27:48.009oai:repositorio.ufscar.br:ufscar/7757TElDRU7Dh0EgREUgRElTVFJJQlVJw4fDg08gTsODTy1FWENMVVNJVkEKCkNvbSBhIGFwcmVzZW50YcOnw6NvIGRlc3RhIGxpY2Vuw6dhLCB2b2PDqiAobyBhdXRvciAoZXMpIG91IG8gdGl0dWxhciBkb3MgZGlyZWl0b3MgZGUgYXV0b3IpIGNvbmNlZGUgw6AgVW5pdmVyc2lkYWRlCkZlZGVyYWwgZGUgU8OjbyBDYXJsb3MgbyBkaXJlaXRvIG7Do28tZXhjbHVzaXZvIGRlIHJlcHJvZHV6aXIsICB0cmFkdXppciAoY29uZm9ybWUgZGVmaW5pZG8gYWJhaXhvKSwgZS9vdQpkaXN0cmlidWlyIGEgc3VhIHRlc2Ugb3UgZGlzc2VydGHDp8OjbyAoaW5jbHVpbmRvIG8gcmVzdW1vKSBwb3IgdG9kbyBvIG11bmRvIG5vIGZvcm1hdG8gaW1wcmVzc28gZSBlbGV0csO0bmljbyBlCmVtIHF1YWxxdWVyIG1laW8sIGluY2x1aW5kbyBvcyBmb3JtYXRvcyDDoXVkaW8gb3UgdsOtZGVvLgoKVm9jw6ogY29uY29yZGEgcXVlIGEgVUZTQ2FyIHBvZGUsIHNlbSBhbHRlcmFyIG8gY29udGXDumRvLCB0cmFuc3BvciBhIHN1YSB0ZXNlIG91IGRpc3NlcnRhw6fDo28KcGFyYSBxdWFscXVlciBtZWlvIG91IGZvcm1hdG8gcGFyYSBmaW5zIGRlIHByZXNlcnZhw6fDo28uCgpWb2PDqiB0YW1iw6ltIGNvbmNvcmRhIHF1ZSBhIFVGU0NhciBwb2RlIG1hbnRlciBtYWlzIGRlIHVtYSBjw7NwaWEgYSBzdWEgdGVzZSBvdQpkaXNzZXJ0YcOnw6NvIHBhcmEgZmlucyBkZSBzZWd1cmFuw6dhLCBiYWNrLXVwIGUgcHJlc2VydmHDp8Ojby4KClZvY8OqIGRlY2xhcmEgcXVlIGEgc3VhIHRlc2Ugb3UgZGlzc2VydGHDp8OjbyDDqSBvcmlnaW5hbCBlIHF1ZSB2b2PDqiB0ZW0gbyBwb2RlciBkZSBjb25jZWRlciBvcyBkaXJlaXRvcyBjb250aWRvcwpuZXN0YSBsaWNlbsOnYS4gVm9jw6ogdGFtYsOpbSBkZWNsYXJhIHF1ZSBvIGRlcMOzc2l0byBkYSBzdWEgdGVzZSBvdSBkaXNzZXJ0YcOnw6NvIG7Do28sIHF1ZSBzZWphIGRlIHNldQpjb25oZWNpbWVudG8sIGluZnJpbmdlIGRpcmVpdG9zIGF1dG9yYWlzIGRlIG5pbmd1w6ltLgoKQ2FzbyBhIHN1YSB0ZXNlIG91IGRpc3NlcnRhw6fDo28gY29udGVuaGEgbWF0ZXJpYWwgcXVlIHZvY8OqIG7Do28gcG9zc3VpIGEgdGl0dWxhcmlkYWRlIGRvcyBkaXJlaXRvcyBhdXRvcmFpcywgdm9jw6oKZGVjbGFyYSBxdWUgb2J0ZXZlIGEgcGVybWlzc8OjbyBpcnJlc3RyaXRhIGRvIGRldGVudG9yIGRvcyBkaXJlaXRvcyBhdXRvcmFpcyBwYXJhIGNvbmNlZGVyIMOgIFVGU0NhcgpvcyBkaXJlaXRvcyBhcHJlc2VudGFkb3MgbmVzdGEgbGljZW7Dp2EsIGUgcXVlIGVzc2UgbWF0ZXJpYWwgZGUgcHJvcHJpZWRhZGUgZGUgdGVyY2Vpcm9zIGVzdMOhIGNsYXJhbWVudGUKaWRlbnRpZmljYWRvIGUgcmVjb25oZWNpZG8gbm8gdGV4dG8gb3Ugbm8gY29udGXDumRvIGRhIHRlc2Ugb3UgZGlzc2VydGHDp8OjbyBvcmEgZGVwb3NpdGFkYS4KCkNBU08gQSBURVNFIE9VIERJU1NFUlRBw4fDg08gT1JBIERFUE9TSVRBREEgVEVOSEEgU0lETyBSRVNVTFRBRE8gREUgVU0gUEFUUk9Dw41OSU8gT1UKQVBPSU8gREUgVU1BIEFHw4pOQ0lBIERFIEZPTUVOVE8gT1UgT1VUUk8gT1JHQU5JU01PIFFVRSBOw4NPIFNFSkEgQSBVRlNDYXIsClZPQ8OKIERFQ0xBUkEgUVVFIFJFU1BFSVRPVSBUT0RPUyBFIFFVQUlTUVVFUiBESVJFSVRPUyBERSBSRVZJU8ODTyBDT01PClRBTULDiU0gQVMgREVNQUlTIE9CUklHQcOHw5VFUyBFWElHSURBUyBQT1IgQ09OVFJBVE8gT1UgQUNPUkRPLgoKQSBVRlNDYXIgc2UgY29tcHJvbWV0ZSBhIGlkZW50aWZpY2FyIGNsYXJhbWVudGUgbyBzZXUgbm9tZSAocykgb3UgbyhzKSBub21lKHMpIGRvKHMpCmRldGVudG9yKGVzKSBkb3MgZGlyZWl0b3MgYXV0b3JhaXMgZGEgdGVzZSBvdSBkaXNzZXJ0YcOnw6NvLCBlIG7Do28gZmFyw6EgcXVhbHF1ZXIgYWx0ZXJhw6fDo28sIGFsw6ltIGRhcXVlbGFzCmNvbmNlZGlkYXMgcG9yIGVzdGEgbGljZW7Dp2EuCg==Repositório InstitucionalPUBhttps://repositorio.ufscar.br/oai/requestopendoar:43222019-09-11T02:27:48Repositório Institucional da UFSCAR - Universidade Federal de São Carlos (UFSCAR)false
dc.title.por.fl_str_mv Cuidado à criança e ao adolescente com deficiência visual : experiência da família
title Cuidado à criança e ao adolescente com deficiência visual : experiência da família
spellingShingle Cuidado à criança e ao adolescente com deficiência visual : experiência da família
Barbieri, Mayara Caroline
Pessoas com deficiência visual
Criança com deficiência
Baixa visão
Enfermagem familiar
Relações familiares
Visual impaired persons
Disabled children
Vision, low
Family nursing
Family relations
Activities of daily living
Chronic disease
CIENCIAS DA SAUDE::ENFERMAGEM
title_short Cuidado à criança e ao adolescente com deficiência visual : experiência da família
title_full Cuidado à criança e ao adolescente com deficiência visual : experiência da família
title_fullStr Cuidado à criança e ao adolescente com deficiência visual : experiência da família
title_full_unstemmed Cuidado à criança e ao adolescente com deficiência visual : experiência da família
title_sort Cuidado à criança e ao adolescente com deficiência visual : experiência da família
author Barbieri, Mayara Caroline
author_facet Barbieri, Mayara Caroline
author_role author
dc.contributor.authorlattes.por.fl_str_mv http://lattes.cnpq.br/4667229554253725
dc.contributor.author.fl_str_mv Barbieri, Mayara Caroline
dc.contributor.advisor1.fl_str_mv Dupas, Giselle
dc.contributor.advisor1Lattes.fl_str_mv http://lattes.cnpq.br/9461883918498554
contributor_str_mv Dupas, Giselle
dc.subject.por.fl_str_mv Pessoas com deficiência visual
Criança com deficiência
Baixa visão
Enfermagem familiar
Relações familiares
topic Pessoas com deficiência visual
Criança com deficiência
Baixa visão
Enfermagem familiar
Relações familiares
Visual impaired persons
Disabled children
Vision, low
Family nursing
Family relations
Activities of daily living
Chronic disease
CIENCIAS DA SAUDE::ENFERMAGEM
dc.subject.eng.fl_str_mv Visual impaired persons
Disabled children
Vision, low
Family nursing
Family relations
Activities of daily living
Chronic disease
dc.subject.cnpq.fl_str_mv CIENCIAS DA SAUDE::ENFERMAGEM
description Visual impairment classification varies from low visual loss to total absence of vision. There are many alterations in the routine of children and teenagers who suffer with visual impairment, changing their independency, the way they do everyday activities and the relationship with other people, changing their family lives too. Based on this, we found the necessity and motivation to do this research, which aims to study the experiences of visual impaired children and teenagers. This is a qualitative and descriptive research conducted in two cities, with the Symbolic Interactionism as theoretical reference. In the city A, the identification of the families was done using the data supplied by the Secretaria Estadual de Educação do Estado de São Paulo (the official government institution for education in the state of Sao Paulo). In the city B, we obtained the data from an institution for people with visual impairment; eighteen families were interviewed, and the total number of participants was 61. Data were collected using semi-structured interviews, genogram and ecomap. They were recorded and conducted in their homes or in the institution; the research was approved by the University research ethics committee number: 1.034.350. The narrative analysis was used as the methodological reference to make the interpretation of the interviews and understand the trajectory of the families. For a better comprehension, the results were divided in themes, categories and subcategories and organized in three articles for the data analysis. The trajectory starts with the perception of the first signs of visual impairment and the surprise with the diagnosis. After, the families have to adapt their routines in order to facilitate patient’s life. Among the adaptations, there is the use of treatment resources, the necessity to adapt and accept the condition, to protect and to understand the limits to overprotection. The school environment was described as difficult and traumatic in the city A. The social support received by the family may not be characterized as social network, but as a social support. For the families who live in the city B, the support from a specialized organization was essential to deal with visual impairment. We may conclude that it is necessary the qualification of education and health professionals to modify the reality of these families. This research may support improvements in current public health policies and create new ones for the inclusion of visual impaired patients
publishDate 2016
dc.date.accessioned.fl_str_mv 2016-10-10T18:33:34Z
dc.date.available.fl_str_mv 2016-10-10T18:33:34Z
dc.date.issued.fl_str_mv 2016-02-15
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dc.identifier.citation.fl_str_mv BARBIERI, Mayara Caroline. Cuidado à criança e ao adolescente com deficiência visual : experiência da família. 2016. Dissertação (Mestrado em Enfermagem) – Universidade Federal de São Carlos, São Carlos, 2016. Disponível em: https://repositorio.ufscar.br/handle/ufscar/7757.
dc.identifier.uri.fl_str_mv https://repositorio.ufscar.br/handle/ufscar/7757
identifier_str_mv BARBIERI, Mayara Caroline. Cuidado à criança e ao adolescente com deficiência visual : experiência da família. 2016. Dissertação (Mestrado em Enfermagem) – Universidade Federal de São Carlos, São Carlos, 2016. Disponível em: https://repositorio.ufscar.br/handle/ufscar/7757.
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Câmpus São Carlos
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dc.publisher.initials.fl_str_mv UFSCar
publisher.none.fl_str_mv Universidade Federal de São Carlos
Câmpus São Carlos
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