A look at the narratives of parents of children with ASD: understanding the feelings and challenges in the search for adequate care
Autor(a) principal: | |
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Data de Publicação: | 2023 |
Outros Autores: | , , |
Tipo de documento: | Artigo |
Idioma: | por |
Título da fonte: | Revista Educação Especial (UFSM) |
Texto Completo: | http://periodicos.ufsm.br/educacaoespecial/article/view/71018 |
Resumo: | Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder, considered a public health problem due to increasing diagnosis worldwide. The present study sought to analyze, through the narratives produced to parents of children with ASD, the feelings and repercussions of the diagnosis on the family, as well as the behaviors considered appropriate in relation to care provided by health professionals. This is a descriptive exploratory research, of a qualitative nature, developed in a municipality in the interior of Rio Grande do Sul, where interviews were applied with 13 parents of children with ASD. Data were collected between March and May 2022, in houses or work theirs. For data analysis, the Content Analysis method was used, emerging four thematic categories: reactions and feelings in the face of a diagnosis, ASD and family and social repercussions, parent’s narratives regarding the care provided by health professionals, behaviors professionals considered ideal. The results indicated that the diagnosis impacts the lives of family members in different ways, arousing different feelings, requiring changes in routine and social life, as the family ends up focusing its activities according to the demands presented by the child. Among the difficulties faced by the participants, the lack of reception and support in the health services, difficulties in accessing therapies, in addition to the shortage of specialized professionals, stand out. It is concluded that effective care for the person with ASD and their family is still fragile and professionals must be trained for the demands of this increasing condition. |
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A look at the narratives of parents of children with ASD: understanding the feelings and challenges in the search for adequate careUna mirada a las narrativas de padres de niños con TEA: comprendiendo los sentimientos y desafíos en la búsqueda de una atención adecuadaUm olhar às narrativas dos pais de crianças com TEA: compreendendo os sentimentos e os desafios na busca por um atendimento adequadoTranstorno do Espectro AutistaSaúdeFamíliaAutism Spectrum DisorderHealthFamilyTrastorno del Espectro AutistaSaludFamiliaAutism Spectrum Disorder (ASD) is a neurodevelopmental disorder, considered a public health problem due to increasing diagnosis worldwide. The present study sought to analyze, through the narratives produced to parents of children with ASD, the feelings and repercussions of the diagnosis on the family, as well as the behaviors considered appropriate in relation to care provided by health professionals. This is a descriptive exploratory research, of a qualitative nature, developed in a municipality in the interior of Rio Grande do Sul, where interviews were applied with 13 parents of children with ASD. Data were collected between March and May 2022, in houses or work theirs. For data analysis, the Content Analysis method was used, emerging four thematic categories: reactions and feelings in the face of a diagnosis, ASD and family and social repercussions, parent’s narratives regarding the care provided by health professionals, behaviors professionals considered ideal. The results indicated that the diagnosis impacts the lives of family members in different ways, arousing different feelings, requiring changes in routine and social life, as the family ends up focusing its activities according to the demands presented by the child. Among the difficulties faced by the participants, the lack of reception and support in the health services, difficulties in accessing therapies, in addition to the shortage of specialized professionals, stand out. It is concluded that effective care for the person with ASD and their family is still fragile and professionals must be trained for the demands of this increasing condition.El Trastorno del Espectro Autista (TEA) es un trastorno del neurodesarrollo, considerado un problema de salud pública debido al creciente número de diagnósticos anuales, desta forma, el presente estudio buscó analizar, através de las narrativas producidas por padres de niños, comportamientos tomados como adecuado en relación con la atención brindada por los profesionales de la salud. Investigación exploratoria descriptiva cualitativa, desarrollada en un municipio del interior del estado de Rio Grande do Sul, se aplicaron entrevistas con 13 padres de niños con TEA. Los datos fueron recolectados entre marzo y mayo de 2022. Para el análisis de los datos, se utilizó método de Análisis de Contenido, emergiendo cuatro categorías temáticas: reacciones y sentimientos ante un diagnóstico, TEA y repercusiones familiares y sociales, narrativas de los padres sobre el cuidado prestado por los profesionales de la salud, comportamientos considerados ideales por los profesionales. Los resultados indicaron que el diagnóstico impacta la vida de los miembros de la familia de diferentes maneras, despertando diferentes sentimientos, requiriendo cambios en rutina y en vida social, ya que la familia termina enfocando sus actividades de acuerdo a las demandas presentadas por el niño. Entre las dificultades enfrentadas por los participantes, se destacan la falta de acogida y apoyo en los servicios de salud, dificultades para acceder a terapias, además la escasez de profesionales especializados. Se concluye que la atención efectiva la persona con TEA y su familia es frágil y los profesionales deben ser capacitados para exigencias de esta condición creciente.O Transtorno do Espectro Autista (TEA) é um transtorno do neurodesenvolvimento, considerado um problema de saúde pública devido diagnóstico crescente mundialmente. O presente estudo buscou analisar, através das narrativas produzidas pelos pais de crianças com TEA, os sentimentos e as repercussões do diagnóstico na família, bem como as condutas tidas como adequadas em relação atendimento prestados pelos profissionais de saúde. Trata-se de uma pesquisa exploratória descritiva, de caráter qualitativo, desenvolvida em um município no interior do estado do Rio Grande do Sul, onde foram aplicadas entrevistas com 13 pais de crianças com TEA. Os dados foram coletados entre março e maio de 2022, nas residências e no local de trabalho dos entrevistados. Para a análise dos dados utilizou-se o método de Análise de Conteúdo, emergindo quatro categorias temáticas: reações e sentimentos diante de um diagnóstico, o TEA e as repercussões familiares e sociais, narrativas dos pais referentes aos atendimentos prestados pelos profissionais de saúde, condutas profissionais consideradas ideais. Os resultados indicaram que o diagnóstico impacta de diversas maneiras na vida dos familiares, despertando diferentes sentimentos, requerendo alterações na rotina e na vida social, pois a família acaba centrando suas atividades conforme as demandas da criança. Dentre as dificuldades enfrentadas, destaca-se a falta de acolhimento e apoio nos serviços de saúde, dificuldades de acesso às terapias e a escassez de profissionais especializados. Conclui-se que o cuidado efetivo a pessoa com TEA e sua família ainda possui fragilidade e os profissionais devem ser capacitados para as demandas desta condição que vem aumentando.Universidade Federal de Santa Maria2023-12-06info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdftext/htmlhttp://periodicos.ufsm.br/educacaoespecial/article/view/7101810.5902/1984686X71018Special Education Magazine; Vol. 36 No. 1 (2023): Revista Educação Especial – Publicação Contínua – Qualis – A2; e63/1-25Revista de Educación Especial; Vol. 36 Núm. 1 (2023): Revista Educação Especial – Publicação Contínua – Qualis – A2; e63/1-25Revista Educação Especial; v. 36 n. 1 (2023): Revista Educação Especial – Publicação Contínua – Qualis – A2; e63/1-251984-686Xreponame:Revista Educação Especial (UFSM)instname:Universidade Federal de Santa Maria (UFSM)instacron:UFSMporhttp://periodicos.ufsm.br/educacaoespecial/article/view/71018/62623http://periodicos.ufsm.br/educacaoespecial/article/view/71018/62624Copyright (c) 2023 Revista Educação Especialhttps://creativecommons.org/licenses/by-nc/4.0info:eu-repo/semantics/openAccessRossetti, Luiza PessiWeigelt, Leni DiasChielle, Micila PiresSomavilla, Vera Elenei da Costa2024-01-23T16:52:53Zoai:ojs.pkp.sfu.ca:article/71018Revistahttps://periodicos.ufsm.br/educacaoespecialPUBhttp://cascavel.ufsm.br/revistas/ojs-2.2.2/index.php/educacaoespecial/oaieducacaoespecial@smail.ufsm.br||clenioberni@gmail.com1984-686X1808-270Xopendoar:2024-01-23T16:52:53Revista Educação Especial (UFSM) - Universidade Federal de Santa Maria (UFSM)false |
dc.title.none.fl_str_mv |
A look at the narratives of parents of children with ASD: understanding the feelings and challenges in the search for adequate care Una mirada a las narrativas de padres de niños con TEA: comprendiendo los sentimientos y desafíos en la búsqueda de una atención adecuada Um olhar às narrativas dos pais de crianças com TEA: compreendendo os sentimentos e os desafios na busca por um atendimento adequado |
title |
A look at the narratives of parents of children with ASD: understanding the feelings and challenges in the search for adequate care |
spellingShingle |
A look at the narratives of parents of children with ASD: understanding the feelings and challenges in the search for adequate care Rossetti, Luiza Pessi Transtorno do Espectro Autista Saúde Família Autism Spectrum Disorder Health Family Trastorno del Espectro Autista Salud Familia |
title_short |
A look at the narratives of parents of children with ASD: understanding the feelings and challenges in the search for adequate care |
title_full |
A look at the narratives of parents of children with ASD: understanding the feelings and challenges in the search for adequate care |
title_fullStr |
A look at the narratives of parents of children with ASD: understanding the feelings and challenges in the search for adequate care |
title_full_unstemmed |
A look at the narratives of parents of children with ASD: understanding the feelings and challenges in the search for adequate care |
title_sort |
A look at the narratives of parents of children with ASD: understanding the feelings and challenges in the search for adequate care |
author |
Rossetti, Luiza Pessi |
author_facet |
Rossetti, Luiza Pessi Weigelt, Leni Dias Chielle, Micila Pires Somavilla, Vera Elenei da Costa |
author_role |
author |
author2 |
Weigelt, Leni Dias Chielle, Micila Pires Somavilla, Vera Elenei da Costa |
author2_role |
author author author |
dc.contributor.author.fl_str_mv |
Rossetti, Luiza Pessi Weigelt, Leni Dias Chielle, Micila Pires Somavilla, Vera Elenei da Costa |
dc.subject.por.fl_str_mv |
Transtorno do Espectro Autista Saúde Família Autism Spectrum Disorder Health Family Trastorno del Espectro Autista Salud Familia |
topic |
Transtorno do Espectro Autista Saúde Família Autism Spectrum Disorder Health Family Trastorno del Espectro Autista Salud Familia |
description |
Autism Spectrum Disorder (ASD) is a neurodevelopmental disorder, considered a public health problem due to increasing diagnosis worldwide. The present study sought to analyze, through the narratives produced to parents of children with ASD, the feelings and repercussions of the diagnosis on the family, as well as the behaviors considered appropriate in relation to care provided by health professionals. This is a descriptive exploratory research, of a qualitative nature, developed in a municipality in the interior of Rio Grande do Sul, where interviews were applied with 13 parents of children with ASD. Data were collected between March and May 2022, in houses or work theirs. For data analysis, the Content Analysis method was used, emerging four thematic categories: reactions and feelings in the face of a diagnosis, ASD and family and social repercussions, parent’s narratives regarding the care provided by health professionals, behaviors professionals considered ideal. The results indicated that the diagnosis impacts the lives of family members in different ways, arousing different feelings, requiring changes in routine and social life, as the family ends up focusing its activities according to the demands presented by the child. Among the difficulties faced by the participants, the lack of reception and support in the health services, difficulties in accessing therapies, in addition to the shortage of specialized professionals, stand out. It is concluded that effective care for the person with ASD and their family is still fragile and professionals must be trained for the demands of this increasing condition. |
publishDate |
2023 |
dc.date.none.fl_str_mv |
2023-12-06 |
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/71018 10.5902/1984686X71018 |
url |
http://periodicos.ufsm.br/educacaoespecial/article/view/71018 |
identifier_str_mv |
10.5902/1984686X71018 |
dc.language.iso.fl_str_mv |
por |
language |
por |
dc.relation.none.fl_str_mv |
http://periodicos.ufsm.br/educacaoespecial/article/view/71018/62623 http://periodicos.ufsm.br/educacaoespecial/article/view/71018/62624 |
dc.rights.driver.fl_str_mv |
Copyright (c) 2023 Revista Educação Especial https://creativecommons.org/licenses/by-nc/4.0 info:eu-repo/semantics/openAccess |
rights_invalid_str_mv |
Copyright (c) 2023 Revista Educação Especial https://creativecommons.org/licenses/by-nc/4.0 |
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; Vol. 36 No. 1 (2023): Revista Educação Especial – Publicação Contínua – Qualis – A2; e63/1-25 Revista de Educación Especial; Vol. 36 Núm. 1 (2023): Revista Educação Especial – Publicação Contínua – Qualis – A2; e63/1-25 Revista Educação Especial; v. 36 n. 1 (2023): Revista Educação Especial – Publicação Contínua – Qualis – A2; e63/1-25 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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1799944197576327168 |