Perspectiva materna sobre variáveis familiares e serviços oferecidos aos filhos com síndrome de Down e/ou autismo

Detalhes bibliográficos
Autor(a) principal: Spinazola, Cariza de Cássia
Data de Publicação: 2020
Tipo de documento: Tese
Idioma: por
Título da fonte: Repositório Institucional da UFSCAR
Texto Completo: https://repositorio.ufscar.br/handle/ufscar/13760
Resumo: This research was divided into two studies, the aims of these studies are: 1: (a) identifying and comparing the needs, the social support and the parent satisfaction of preschool children aged zero to six and elementary school aged six to nine with Down´s syndrome and autism; (b) identifying and comparing the family system of preschool children aged zero to six and of elementary school aged six to nine with Down´s syndrome or autism; (c) describing and comparing the families opinion about the services offered to their preschool children from zero to six years old with Down´s syndrome and (d) correlating the variables. The aim of study 2 was: to identify and compare the needs, the social support and the parental satisfaction of children with Down´s syndrome or autism. The mothers were divided into two groups, G1 (EI) consisting of 20 mothers of children with Down´s syndrome or autism matriculated in early childhood education and G2 (EF) mothers of children with Down´s syndrome or autism matriculated in elementary school until the third year. Contact with the mothers through five municipal schools for early childhood and elementary school and three groups for the families. The tools used in this study were: Family system characterization questionnaire, Family needs questionnaire, Social support questionnaire, Parental satisfaction questionnaire and a semi-structured interview script. The data collected were quantitative and qualitative. The quantitative data were used to make a comparison between the groups using the t-test, and the qualitative data were analyzed though elaboration of categories. It was used Person´s correlation test to correlate the quantitative data. Correspondingly, the comparison between the groups demonstrated that G1 (EI) showed higher information requirements on how to deal with their children, a greater number of people to count on a higher level of satisfaction with the support received. G2 (EF) showed greater need for time to speak with the children´s therapists and teachers. When it comes to school services, in both groups there are still children who do not receive special education assistance and, in most cases, the school does not accomplish referrals to public services or answer parents´ questions. In terms of support networks, both groups indicated the need for specialized professionals and financial backing. For services, most mothers appeal to private institutions or/and associate public and private. It was also related as a positive point in the majority of attention and the manner professionals deal with children at school. When comparing study 2, it was demonstrated that mothers of children with DS, in comparison with the mothers of children with autism, presented a greater need for information about the way the child grows and develops. Still, the mothers of children with autism had needs in issues involving explaining their children´s situation and paying expenses for therapists and other services. The data highlight the importance of more effective support networks for families of children matriculated in public school system and provide relevant subsides for public policies, programs and actions, especially at the municipal level.
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spelling Spinazola, Cariza de CássiaCia, Fabianahttp://lattes.cnpq.br/5999108571365402http://lattes.cnpq.br/05082859707784262021-01-23T12:39:04Z2021-01-23T12:39:04Z2020-06-03SPINAZOLA, Cariza de Cássia. Perspectiva materna sobre variáveis familiares e serviços oferecidos aos filhos com síndrome de Down e/ou autismo. 2020. Tese (Doutorado em Educação Especial) – Universidade Federal de São Carlos, São Carlos, 2020. Disponível em: https://repositorio.ufscar.br/handle/ufscar/13760.https://repositorio.ufscar.br/handle/ufscar/13760This research was divided into two studies, the aims of these studies are: 1: (a) identifying and comparing the needs, the social support and the parent satisfaction of preschool children aged zero to six and elementary school aged six to nine with Down´s syndrome and autism; (b) identifying and comparing the family system of preschool children aged zero to six and of elementary school aged six to nine with Down´s syndrome or autism; (c) describing and comparing the families opinion about the services offered to their preschool children from zero to six years old with Down´s syndrome and (d) correlating the variables. The aim of study 2 was: to identify and compare the needs, the social support and the parental satisfaction of children with Down´s syndrome or autism. The mothers were divided into two groups, G1 (EI) consisting of 20 mothers of children with Down´s syndrome or autism matriculated in early childhood education and G2 (EF) mothers of children with Down´s syndrome or autism matriculated in elementary school until the third year. Contact with the mothers through five municipal schools for early childhood and elementary school and three groups for the families. The tools used in this study were: Family system characterization questionnaire, Family needs questionnaire, Social support questionnaire, Parental satisfaction questionnaire and a semi-structured interview script. The data collected were quantitative and qualitative. The quantitative data were used to make a comparison between the groups using the t-test, and the qualitative data were analyzed though elaboration of categories. It was used Person´s correlation test to correlate the quantitative data. Correspondingly, the comparison between the groups demonstrated that G1 (EI) showed higher information requirements on how to deal with their children, a greater number of people to count on a higher level of satisfaction with the support received. G2 (EF) showed greater need for time to speak with the children´s therapists and teachers. When it comes to school services, in both groups there are still children who do not receive special education assistance and, in most cases, the school does not accomplish referrals to public services or answer parents´ questions. In terms of support networks, both groups indicated the need for specialized professionals and financial backing. For services, most mothers appeal to private institutions or/and associate public and private. It was also related as a positive point in the majority of attention and the manner professionals deal with children at school. When comparing study 2, it was demonstrated that mothers of children with DS, in comparison with the mothers of children with autism, presented a greater need for information about the way the child grows and develops. Still, the mothers of children with autism had needs in issues involving explaining their children´s situation and paying expenses for therapists and other services. The data highlight the importance of more effective support networks for families of children matriculated in public school system and provide relevant subsides for public policies, programs and actions, especially at the municipal level.A presente pesquisa foi dividida em dois estudos, sendo os objetivos do estudo 1: (a) identificar e comparar as necessidades, o suporte social e a satisfação parental das famílias de crianças pré-escolares de zero a seis anos e do ensino fundamental de seis a nove anos com síndrome de Down ou autismo; (b) identificar e comparar o sistema familiar de crianças pré-escolares de zero a seis anos e do ensino fundamental de seis a nove anos com síndrome de Down ou autismo; (c) descrever e comparar a opinião das famílias sobre os serviços oferecidos aos seus filhos pré-escolares de zero a seis anos e do ensino fundamental de seis a nove anos com síndrome de Down ou autismo e (d) correlacionar as variáveis. O objetivo do estudo 2 foi: identificar e comparar as necessidades, o suporte social e a satisfação parental das famílias de crianças com síndrome de Down e autismo. As mães foram divididas em dois grupos, sendo o G1 (EI) formado por 20 mães de crianças com síndrome de Down ou autismo matriculadas na educação infantil e o G2 (EF) 20 mães de crianças com síndrome de Down ou autismo matriculadas no ensino fundamental até o terceiro ano. O contato com as mães ocorreu por meio de cinco escolas municipais de educação infantil e ensino fundamental e três grupos para famílias. Os instrumentos utilizados na pesquisa foram: Questionário de caracterização do sistema familiar, Questionário de necessidades familiares, Questionário de suporte social, Questionário de satisfação parental e um roteiro de entrevista semiestruturado. Os dados coletados foram quantitativos e qualitativos. Com os dados quantitativos foi realizada comparação entre os grupos por meio do teste- t e os qualitativos foram analisados por meio de elaboração de categorias. Para correlacionar os dados quantitativos foi utilizado o teste de correlação de Pearson. Como resultados, a comparação entre os grupos indicou que o G1(EI) apresentou maiores necessidades de informações sobre a maneira de lidar com os filhos, maior número de pessoas com quem contar e maior nível de satisfação com o suporte recebido. O G2 (EF) mostrou maior necessidade de tempo para falar com terapeutas e professores dos filhos. Ao que se refere aos serviços da escola, em ambos os grupos ainda há crianças que não recebem atendimento da educação especial e na maioria dos casos a escola não realiza encaminhamentos para serviços públicos ou esclarecem dúvidas dos pais. No quesito redes de apoio ambos os grupos mencionaram necessidade de profissionais especializados e apoio financeiro. Em relação aos serviços, a maioria das mães recorrem aos particulares e ou associam públicos e particulares. Também foi relatado como ponto positivo em sua maioria a atenção e maneira que os profissionais tratam os filhos na escola. Na comparação do estudo 2, demonstrou-se que as mães de crianças com SD, em comparação com as mães de crianças com autismo apresentaram maiores necessidades de informações sobre a maneira como a criança cresce e se desenvolve. Já, as mães de crianças com autismo, apresentaram necessidades nas questões que envolvem explicar a situação dos filhos e ajuda para pagar despesas com terapeutas e outros serviços. Os dados salientam a importância de redes de apoio mais efetivas para famílias de crianças matriculadas na rede pública e traz subsídios relevantes para políticas públicas, programas e ações principalmente a nível municipal.Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES)CAPES: Código de Financiamento 001porUniversidade Federal de São CarlosCâmpus São CarlosPrograma de Pós-Graduação em Educação Especial - PPGEEsUFSCarAttribution-NonCommercial-NoDerivs 3.0 Brazilhttp://creativecommons.org/licenses/by-nc-nd/3.0/br/info:eu-repo/semantics/openAccessEducação EspecialFamíliaAutismoSíndrome de DownSpecial EducationFamilyAutismDown ́s syndromeCIENCIAS HUMANAS::EDUCACAO::TOPICOS ESPECIFICOS DE EDUCACAO::EDUCACAO ESPECIALPerspectiva materna sobre variáveis familiares e serviços oferecidos aos filhos com síndrome de Down e/ou autismoMaternal perspective on family variables and services offered to children with Down syndrome and / or autisminfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/doctoralThesisreponame:Repositório Institucional da UFSCARinstname:Universidade Federal de São Carlos (UFSCAR)instacron:UFSCARORIGINALTESE_Cariza_Spinazola_2020..pdfTESE_Cariza_Spinazola_2020..pdfTese versão finalapplication/pdf1879086https://{{ getenv "DSPACE_HOST" "repositorio.ufscar.br" }}/bitstream/ufscar/13760/4/TESE_Cariza_Spinazola_2020..pdf4535425ea0687338c6f5e3e3b60cc6a3MD54Carta autorização para autodepósito.pdfCarta autorização para autodepósito.pdfCarta autorização ( orientadora)application/pdf294368https://{{ getenv "DSPACE_HOST" "repositorio.ufscar.br" }}/bitstream/ufscar/13760/2/Carta%20autoriza%c3%a7%c3%a3o%20para%20autodep%c3%b3sito.pdf856975f07b2a31c0e2b9d6c859044b49MD52CC-LICENSElicense_rdflicense_rdfapplication/rdf+xml; charset=utf-8811https://{{ getenv "DSPACE_HOST" "repositorio.ufscar.br" }}/bitstream/ufscar/13760/5/license_rdfe39d27027a6cc9cb039ad269a5db8e34MD55TEXTTESE_Cariza_Spinazola_2020..pdf.txtTESE_Cariza_Spinazola_2020..pdf.txtExtracted texttext/plain295297https://{{ getenv "DSPACE_HOST" "repositorio.ufscar.br" }}/bitstream/ufscar/13760/6/TESE_Cariza_Spinazola_2020..pdf.txt86012a217966d511eb1249bff20e6c90MD56Carta autorização para autodepósito.pdf.txtCarta autorização para autodepósito.pdf.txtExtracted texttext/plain1872https://{{ getenv "DSPACE_HOST" "repositorio.ufscar.br" }}/bitstream/ufscar/13760/8/Carta%20autoriza%c3%a7%c3%a3o%20para%20autodep%c3%b3sito.pdf.txt34c4d416d10b58066772cf7cd86102c2MD58THUMBNAILTESE_Cariza_Spinazola_2020..pdf.jpgTESE_Cariza_Spinazola_2020..pdf.jpgIM Thumbnailimage/jpeg7757https://{{ getenv "DSPACE_HOST" "repositorio.ufscar.br" }}/bitstream/ufscar/13760/7/TESE_Cariza_Spinazola_2020..pdf.jpg7390589ec258fdbe0c8b8869f7294038MD57Carta autorização para autodepósito.pdf.jpgCarta autorização para autodepósito.pdf.jpgIM Thumbnailimage/jpeg13425https://{{ getenv "DSPACE_HOST" "repositorio.ufscar.br" }}/bitstream/ufscar/13760/9/Carta%20autoriza%c3%a7%c3%a3o%20para%20autodep%c3%b3sito.pdf.jpgfc6bb6a57e90874f7d5d25c93a04e927MD59ufscar/137602021-01-24 03:13:39.629oai:repositorio.ufscar.br:ufscar/13760Repositório InstitucionalPUBhttps://repositorio.ufscar.br/oai/requestopendoar:43222021-01-24T03:13:39Repositório Institucional da UFSCAR - Universidade Federal de São Carlos (UFSCAR)false
dc.title.por.fl_str_mv Perspectiva materna sobre variáveis familiares e serviços oferecidos aos filhos com síndrome de Down e/ou autismo
dc.title.alternative.eng.fl_str_mv Maternal perspective on family variables and services offered to children with Down syndrome and / or autism
title Perspectiva materna sobre variáveis familiares e serviços oferecidos aos filhos com síndrome de Down e/ou autismo
spellingShingle Perspectiva materna sobre variáveis familiares e serviços oferecidos aos filhos com síndrome de Down e/ou autismo
Spinazola, Cariza de Cássia
Educação Especial
Família
Autismo
Síndrome de Down
Special Education
Family
Autism
Down ́s syndrome
CIENCIAS HUMANAS::EDUCACAO::TOPICOS ESPECIFICOS DE EDUCACAO::EDUCACAO ESPECIAL
title_short Perspectiva materna sobre variáveis familiares e serviços oferecidos aos filhos com síndrome de Down e/ou autismo
title_full Perspectiva materna sobre variáveis familiares e serviços oferecidos aos filhos com síndrome de Down e/ou autismo
title_fullStr Perspectiva materna sobre variáveis familiares e serviços oferecidos aos filhos com síndrome de Down e/ou autismo
title_full_unstemmed Perspectiva materna sobre variáveis familiares e serviços oferecidos aos filhos com síndrome de Down e/ou autismo
title_sort Perspectiva materna sobre variáveis familiares e serviços oferecidos aos filhos com síndrome de Down e/ou autismo
author Spinazola, Cariza de Cássia
author_facet Spinazola, Cariza de Cássia
author_role author
dc.contributor.authorlattes.por.fl_str_mv http://lattes.cnpq.br/0508285970778426
dc.contributor.author.fl_str_mv Spinazola, Cariza de Cássia
dc.contributor.advisor1.fl_str_mv Cia, Fabiana
dc.contributor.advisor1Lattes.fl_str_mv http://lattes.cnpq.br/5999108571365402
contributor_str_mv Cia, Fabiana
dc.subject.por.fl_str_mv Educação Especial
Família
Autismo
Síndrome de Down
topic Educação Especial
Família
Autismo
Síndrome de Down
Special Education
Family
Autism
Down ́s syndrome
CIENCIAS HUMANAS::EDUCACAO::TOPICOS ESPECIFICOS DE EDUCACAO::EDUCACAO ESPECIAL
dc.subject.eng.fl_str_mv Special Education
Family
Autism
Down ́s syndrome
dc.subject.cnpq.fl_str_mv CIENCIAS HUMANAS::EDUCACAO::TOPICOS ESPECIFICOS DE EDUCACAO::EDUCACAO ESPECIAL
description This research was divided into two studies, the aims of these studies are: 1: (a) identifying and comparing the needs, the social support and the parent satisfaction of preschool children aged zero to six and elementary school aged six to nine with Down´s syndrome and autism; (b) identifying and comparing the family system of preschool children aged zero to six and of elementary school aged six to nine with Down´s syndrome or autism; (c) describing and comparing the families opinion about the services offered to their preschool children from zero to six years old with Down´s syndrome and (d) correlating the variables. The aim of study 2 was: to identify and compare the needs, the social support and the parental satisfaction of children with Down´s syndrome or autism. The mothers were divided into two groups, G1 (EI) consisting of 20 mothers of children with Down´s syndrome or autism matriculated in early childhood education and G2 (EF) mothers of children with Down´s syndrome or autism matriculated in elementary school until the third year. Contact with the mothers through five municipal schools for early childhood and elementary school and three groups for the families. The tools used in this study were: Family system characterization questionnaire, Family needs questionnaire, Social support questionnaire, Parental satisfaction questionnaire and a semi-structured interview script. The data collected were quantitative and qualitative. The quantitative data were used to make a comparison between the groups using the t-test, and the qualitative data were analyzed though elaboration of categories. It was used Person´s correlation test to correlate the quantitative data. Correspondingly, the comparison between the groups demonstrated that G1 (EI) showed higher information requirements on how to deal with their children, a greater number of people to count on a higher level of satisfaction with the support received. G2 (EF) showed greater need for time to speak with the children´s therapists and teachers. When it comes to school services, in both groups there are still children who do not receive special education assistance and, in most cases, the school does not accomplish referrals to public services or answer parents´ questions. In terms of support networks, both groups indicated the need for specialized professionals and financial backing. For services, most mothers appeal to private institutions or/and associate public and private. It was also related as a positive point in the majority of attention and the manner professionals deal with children at school. When comparing study 2, it was demonstrated that mothers of children with DS, in comparison with the mothers of children with autism, presented a greater need for information about the way the child grows and develops. Still, the mothers of children with autism had needs in issues involving explaining their children´s situation and paying expenses for therapists and other services. The data highlight the importance of more effective support networks for families of children matriculated in public school system and provide relevant subsides for public policies, programs and actions, especially at the municipal level.
publishDate 2020
dc.date.issued.fl_str_mv 2020-06-03
dc.date.accessioned.fl_str_mv 2021-01-23T12:39:04Z
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dc.identifier.citation.fl_str_mv SPINAZOLA, Cariza de Cássia. Perspectiva materna sobre variáveis familiares e serviços oferecidos aos filhos com síndrome de Down e/ou autismo. 2020. Tese (Doutorado em Educação Especial) – Universidade Federal de São Carlos, São Carlos, 2020. Disponível em: https://repositorio.ufscar.br/handle/ufscar/13760.
dc.identifier.uri.fl_str_mv https://repositorio.ufscar.br/handle/ufscar/13760
identifier_str_mv SPINAZOLA, Cariza de Cássia. Perspectiva materna sobre variáveis familiares e serviços oferecidos aos filhos com síndrome de Down e/ou autismo. 2020. Tese (Doutorado em Educação Especial) – Universidade Federal de São Carlos, São Carlos, 2020. Disponível em: https://repositorio.ufscar.br/handle/ufscar/13760.
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