A look at the narratives of parents of children with ASD: understanding the feelings and challenges in the search for adequate care

Detalhes bibliográficos
Autor(a) principal: Rossetti, Luiza Pessi
Data de Publicação: 2023
Outros Autores: Weigelt, Leni Dias, Chielle, Micila Pires, Somavilla, Vera Elenei da Costa
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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spelling 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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