Down syndrome diagnosis news reactions in parents perception

Detalhes bibliográficos
Autor(a) principal: Bianchi, Bruna
Data de Publicação: 2021
Outros Autores: Spinazola, Cariza De Cássia, Galvani, Márcia Duarte
Tipo de documento: Artigo
Idioma: por
Título da fonte: Revista Educação Especial (UFSM)
Texto Completo: http://periodicos.ufsm.br/educacaoespecial/article/view/37804
Resumo: The birth of a child is part of a family's life cycle. Since its conception, the child is already the result of a series of expectations. The aim of this research was to describe and analyze the reactions of parents of children with Down syndrome (DS) to the news of the diagnosis of the syndrome and the support received for the care of the child. The design of this research was a mixed approach of a descriptive nature. It was used for data collection: a semi-structured interview script with paternal characterization. Participated in the research 10 parents (men) of children diagnosed with DS in the age group from 0 to 6 years old. The contact with the parents took place through an Institute for the coexistence of people with DS in a city in the interior of the state of São Paulo. Data collection with parents took place on the premises of the Institute or at the residence of the participants themselves. Content analysis was performed with the categorization of qualitative data from the interviews. The results showed that in terms of how the news of DS was given, most parents received the news after the child's birth. Regarding changes in the way they received the news, two parents reported that it could be different, doctors could be more subtle. For support for care, it is noted that part of the parents received personal and financial support for the care of their children. The study showed that the moment of news needs to be reassessed by professionals, and that interventions should focus on children and families.
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spelling Down syndrome diagnosis news reactions in parents perceptionReacciones de la noticia del diagnóstico del síndrome de Down en la percepción de los padresReações da notícia do diagnóstico da síndrome de Down na percepção paternaSpecial EducationParentsDown's syndrome.Educación Especiallos padressindrome de Down.Educação EspecialPaissíndrome de Down.The birth of a child is part of a family's life cycle. Since its conception, the child is already the result of a series of expectations. The aim of this research was to describe and analyze the reactions of parents of children with Down syndrome (DS) to the news of the diagnosis of the syndrome and the support received for the care of the child. The design of this research was a mixed approach of a descriptive nature. It was used for data collection: a semi-structured interview script with paternal characterization. Participated in the research 10 parents (men) of children diagnosed with DS in the age group from 0 to 6 years old. The contact with the parents took place through an Institute for the coexistence of people with DS in a city in the interior of the state of São Paulo. Data collection with parents took place on the premises of the Institute or at the residence of the participants themselves. Content analysis was performed with the categorization of qualitative data from the interviews. The results showed that in terms of how the news of DS was given, most parents received the news after the child's birth. Regarding changes in the way they received the news, two parents reported that it could be different, doctors could be more subtle. For support for care, it is noted that part of the parents received personal and financial support for the care of their children. The study showed that the moment of news needs to be reassessed by professionals, and that interventions should focus on children and families.El nacimiento de un niño es parte del ciclo de vida de una familia. Desde su concepción, el niño ya es el resultado de una serie de expectativas. El objetivo de esta investigación fue describir y analizar las reacciones de los padres de niños con síndrome de Down (SD) a la noticia del diagnóstico del síndrome y el apoyo recibido para el cuidado del niño. El diseño de esta investigación fue un enfoque mixto de carácter descriptivo. Se utilizó para la recolección de datos: un guión de entrevista semiestructurado con caracterización paterna. Participaron en la investigación 10 padres (hombres) de niños diagnosticados con SD en el grupo de edad de 0 a 6 años. El contacto con los padres se realizó a través de un Instituto para la convivencia de personas con SD en una ciudad del interior del estado de São Paulo. La recogida de datos con los padres se llevó a cabo en las instalaciones del Instituto o en la residencia de los propios participantes. El análisis de contenido se realizó con la categorización de los datos cualitativos de las entrevistas. Los resultados mostraron que, en términos de cómo se dio la noticia del síndrome de Down, la mayoría de los padres recibieron la noticia después del nacimiento del niño. En cuanto a los cambios en la forma en que recibieron la noticia, dos padres informaron que podría ser diferente, los médicos podrían ser más sutiles. Para el apoyo al cuidado, se observa que parte de los padres recibió apoyo personal y económico para el cuidado de sus hijos. El estudio mostró que el momento de la noticia debe ser reevaluado por profesionales y que las intervenciones deben centrarse en los niños y las familias.O nascimento de uma criança faz parte do ciclo de vida de uma família. Desde a sua concepção, a criança já é fruto de uma série de expectativas. O objetivo desta pesquisa foi descrever e analisar as reações dos pais de crianças com síndrome de Down (SD) diante da notícia do diagnóstico da síndrome e os apoios recebidos para os cuidados do (a) filho (a). O delineamento da presente pesquisa foi de abordagem mista, de cunho descritivo. Foi utilizado para coleta dos dados: um roteiro semiestruturado de Entrevista de caracterização paterna. Participaram da pesquisa 10 pais (homens) de crianças diagnosticadas com SD na faixa etária de 0 a 6 anos de idade. O contato com os pais ocorreu por meio de um Instituto de convivência de pessoas com SD em uma cidade do interior do estado de São Paulo. A coleta de dados com os pais ocorreu nas dependências do Instituto ou na residência dos próprios participantes. Foi realizada a análise de conteúdo com a categorização dos dados qualitativos das entrevistas. Os resultados apontaram que no quesito maneira como a notícia da SD foi dada, a maioria dos pais recebeu a notícia após o nascimento da criança. Em relação a mudanças na maneira como receberam a notícia, dois pais relataram que poderia ser diferente, os médicos poderiam ser mais sutis. Para o apoio para cuidados, nota-se que parte dos pais recebeu apoio pessoal e financeiro para os cuidados dos filhos. O estudo mostrou que o momento da notícia precisa ser reavaliado pelos profissionais, e que as intervenções devem focar nas crianças e nas famílias. Universidade Federal de Santa Maria2021-03-23info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdftext/htmlhttp://periodicos.ufsm.br/educacaoespecial/article/view/3780410.5902/1984686X37804Special Education Magazine; Revista Educação Especial, v. 34, 2021 – Publicação Contínua; e16/1-23Revista de Educación Especial; Revista Educação Especial, v. 34, 2021 – Publicação Contínua; e16/1-23Revista Educação Especial; Revista Educação Especial, v. 34, 2021 – Publicação Contínua; e16/1-231984-686Xreponame:Revista Educação Especial (UFSM)instname:Universidade Federal de Santa Maria (UFSM)instacron:UFSMporhttp://periodicos.ufsm.br/educacaoespecial/article/view/37804/pdfhttp://periodicos.ufsm.br/educacaoespecial/article/view/37804/htmlCopyright (c) 2021 Revista Educação Especialinfo:eu-repo/semantics/openAccessBianchi, BrunaSpinazola, Cariza De CássiaGalvani, Márcia Duarte2023-04-04T16:50:06Zoai:ojs.pkp.sfu.ca:article/37804Revistahttps://periodicos.ufsm.br/educacaoespecialPUBhttp://cascavel.ufsm.br/revistas/ojs-2.2.2/index.php/educacaoespecial/oaieducacaoespecial@smail.ufsm.br||clenioberni@gmail.com1984-686X1808-270Xopendoar:2023-04-04T16:50:06Revista Educação Especial (UFSM) - Universidade Federal de Santa Maria (UFSM)false
dc.title.none.fl_str_mv Down syndrome diagnosis news reactions in parents perception
Reacciones de la noticia del diagnóstico del síndrome de Down en la percepción de los padres
Reações da notícia do diagnóstico da síndrome de Down na percepção paterna
title Down syndrome diagnosis news reactions in parents perception
spellingShingle Down syndrome diagnosis news reactions in parents perception
Bianchi, Bruna
Special Education
Parents
Down's syndrome.
Educación Especial
los padres
sindrome de Down.
Educação Especial
Pais
síndrome de Down.
title_short Down syndrome diagnosis news reactions in parents perception
title_full Down syndrome diagnosis news reactions in parents perception
title_fullStr Down syndrome diagnosis news reactions in parents perception
title_full_unstemmed Down syndrome diagnosis news reactions in parents perception
title_sort Down syndrome diagnosis news reactions in parents perception
author Bianchi, Bruna
author_facet Bianchi, Bruna
Spinazola, Cariza De Cássia
Galvani, Márcia Duarte
author_role author
author2 Spinazola, Cariza De Cássia
Galvani, Márcia Duarte
author2_role author
author
dc.contributor.author.fl_str_mv Bianchi, Bruna
Spinazola, Cariza De Cássia
Galvani, Márcia Duarte
dc.subject.por.fl_str_mv Special Education
Parents
Down's syndrome.
Educación Especial
los padres
sindrome de Down.
Educação Especial
Pais
síndrome de Down.
topic Special Education
Parents
Down's syndrome.
Educación Especial
los padres
sindrome de Down.
Educação Especial
Pais
síndrome de Down.
description The birth of a child is part of a family's life cycle. Since its conception, the child is already the result of a series of expectations. The aim of this research was to describe and analyze the reactions of parents of children with Down syndrome (DS) to the news of the diagnosis of the syndrome and the support received for the care of the child. The design of this research was a mixed approach of a descriptive nature. It was used for data collection: a semi-structured interview script with paternal characterization. Participated in the research 10 parents (men) of children diagnosed with DS in the age group from 0 to 6 years old. The contact with the parents took place through an Institute for the coexistence of people with DS in a city in the interior of the state of São Paulo. Data collection with parents took place on the premises of the Institute or at the residence of the participants themselves. Content analysis was performed with the categorization of qualitative data from the interviews. The results showed that in terms of how the news of DS was given, most parents received the news after the child's birth. Regarding changes in the way they received the news, two parents reported that it could be different, doctors could be more subtle. For support for care, it is noted that part of the parents received personal and financial support for the care of their children. The study showed that the moment of news needs to be reassessed by professionals, and that interventions should focus on children and families.
publishDate 2021
dc.date.none.fl_str_mv 2021-03-23
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
format article
status_str publishedVersion
dc.identifier.uri.fl_str_mv http://periodicos.ufsm.br/educacaoespecial/article/view/37804
10.5902/1984686X37804
url http://periodicos.ufsm.br/educacaoespecial/article/view/37804
identifier_str_mv 10.5902/1984686X37804
dc.language.iso.fl_str_mv por
language por
dc.relation.none.fl_str_mv http://periodicos.ufsm.br/educacaoespecial/article/view/37804/pdf
http://periodicos.ufsm.br/educacaoespecial/article/view/37804/html
dc.rights.driver.fl_str_mv Copyright (c) 2021 Revista Educação Especial
info:eu-repo/semantics/openAccess
rights_invalid_str_mv Copyright (c) 2021 Revista Educação Especial
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
text/html
dc.publisher.none.fl_str_mv Universidade Federal de Santa Maria
publisher.none.fl_str_mv Universidade Federal de Santa Maria
dc.source.none.fl_str_mv Special Education Magazine; Revista Educação Especial, v. 34, 2021 – Publicação Contínua; e16/1-23
Revista de Educación Especial; Revista Educação Especial, v. 34, 2021 – Publicação Contínua; e16/1-23
Revista Educação Especial; Revista Educação Especial, v. 34, 2021 – Publicação Contínua; e16/1-23
1984-686X
reponame:Revista Educação Especial (UFSM)
instname:Universidade Federal de Santa Maria (UFSM)
instacron:UFSM
instname_str Universidade Federal de Santa Maria (UFSM)
instacron_str UFSM
institution UFSM
reponame_str Revista Educação Especial (UFSM)
collection Revista Educação Especial (UFSM)
repository.name.fl_str_mv Revista Educação Especial (UFSM) - Universidade Federal de Santa Maria (UFSM)
repository.mail.fl_str_mv educacaoespecial@smail.ufsm.br||clenioberni@gmail.com
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