Social exclusion and inclusion: perception of family members living with a person with autism spectrum disorder
Autor(a) principal: | |
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Data de Publicação: | 2022 |
Outros Autores: | , |
Tipo de documento: | Artigo |
Idioma: | eng |
Título da fonte: | Research, Society and Development |
Texto Completo: | https://rsdjournal.org/index.php/rsd/article/view/35103 |
Resumo: | Objective: Identify evidence of social inclusion and exclusion perceived by family members, due to living with a person diagnosed with Autism Spectrum Disorder (ASD). Methodology: The study was conducted following a qualitative approach, in which five families that live with a person diagnosed with ASD were part of our analysis, involving fathers (2), mothers (5), brothers (2) and grandmother (1). Data collection was carried out through recorded interviews, using the Critical Incident Technique, and data were organized using Bardin's thematic content analysis. Results: Two thematic categories emerged: “The context of autistic life and its adversities facing stigma and exclusion" and "A positive view of Autism Spectrum Disorder." The first addresses the adversities and difficulties faced in identifying the disorder and in the process of family adaptability. This category also takes into consideration society's and family's lack of knowledge about ASD, which leads to social exclusion. The second category exhibits lessons learned while living with a person diagnosed with ASD. Conclusion: Furthermore, it portrays the adaptation and growth occurred in intrafamily relationships. Therefore, daily living with a person with ASD is characterized by adversity, stigma and social exclusion. However, it also distinguishes the resilience and overcoming of family members. |
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Social exclusion and inclusion: perception of family members living with a person with autism spectrum disorderExclusión-inclusión social: percepción de los familiares que conviven con una persona con trastorno del espectro autistaExclusão-inclusão social: percepção de familiares que convivem com pessoa com transtorno do espectro autistaTrastorno del espectro autistaFamiliaExclusión socialEstigma socialEventos de cambio de vida.Transtorno do espectro autistaFamíliaExclusão socialEstigma socialExperiências de vida.Autistic spectrum disorderFamilySocial exclusionSocial stigmaLife change events.Objective: Identify evidence of social inclusion and exclusion perceived by family members, due to living with a person diagnosed with Autism Spectrum Disorder (ASD). Methodology: The study was conducted following a qualitative approach, in which five families that live with a person diagnosed with ASD were part of our analysis, involving fathers (2), mothers (5), brothers (2) and grandmother (1). Data collection was carried out through recorded interviews, using the Critical Incident Technique, and data were organized using Bardin's thematic content analysis. Results: Two thematic categories emerged: “The context of autistic life and its adversities facing stigma and exclusion" and "A positive view of Autism Spectrum Disorder." The first addresses the adversities and difficulties faced in identifying the disorder and in the process of family adaptability. This category also takes into consideration society's and family's lack of knowledge about ASD, which leads to social exclusion. The second category exhibits lessons learned while living with a person diagnosed with ASD. Conclusion: Furthermore, it portrays the adaptation and growth occurred in intrafamily relationships. Therefore, daily living with a person with ASD is characterized by adversity, stigma and social exclusion. However, it also distinguishes the resilience and overcoming of family members.Objetivo: Identificar evidencias de inclusión y exclusión social percibidas por los familiares, debido a la convivencia con una persona diagnosticada con Trastorno del Espectro Autista (TEA). Metodología: El estudio se realizó siguiendo un enfoque cualitativo, en el que cinco familias que conviven con una persona diagnosticada con TEA fueron parte de nuestro análisis, involucrando a padres (2), madres (5), hermanos (2) y abuela (1). La recolección de datos se realizó a través de entrevistas grabadas, utilizando la Técnica del Incidente Crítico, y los datos fueron organizados utilizando el análisis de contenido temático de Bardin. Resultados: Dos categorías temáticas surgieron: “El contexto de la vida autista y sus adversidades frente al estigma y la exclusión” y “Una visión positiva del Trastorno del Espectro Autista”. La primera aborda las adversidades y dificultades enfrentadas en la identificación del trastorno y en el proceso de adaptabilidad familiar. Esta categoría también toma en cuenta el desconocimiento de la sociedad y la familia sobre los TEA, lo que conduce a la exclusión social. La segunda categoría exhibe las lecciones aprendidas durante la convivencia con una persona diagnosticada con TEA. Conclusión: Además, retrata la adaptación y el crecimiento ocurrido en por lo tanto, la convivencia con una persona con TEA se caracteriza por la adversidad, el estigma y la exclusión social, pero también distingue la resiliencia y superación de los familiares.Objetivo: Identificar evidências de inclusão e exclusão sociais percebidas por membros familiares, devido à convivência com pessoa com diagnóstico de Transtorno do Espectro Autista (TEA). Metodologia: Estudo com abordagem qualitativa, no qual fizeram parte cinco famílias que convivem com pessoa com diagnóstico de TEA, sendo pais (2), mães (5), irmãos (2) e avó (1). A coleta de dados foi por meio de entrevista, gravada, utilizando-se a Técnica do Incidente Crítico. Os dados foram organizados utilizando-se à análise de conteúdo temática de Bardin. Resultados: Emergiram duas categorias temáticas: “O contexto de vida do autista e suas adversidades diante do estigma e da exclusão” e “Um olhar positivo para o Transtorno do Espectro do Autismo”. A primeira aborda as adversidades e dificuldades enfrentadas na identificação do transtorno e no processo de adaptabilidade familiar; a falta de conhecimento a respeito do TEA pela sociedade, e de membros familiares, que propiciam a ações de exclusão social. A segunda exibe o aprendizado na convivência com o TEA, a adaptabilidade e o crescimento nas relações intrafamiliares. Conclusão: Destarte, o convívio cotidiano com uma pessoa com TEA caracteriza-se com adversidades, estigma e a exclusão social. Contudo, também, distingue a resiliência e a superação dos familiares.Research, Society and Development2022-09-29info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfhttps://rsdjournal.org/index.php/rsd/article/view/3510310.33448/rsd-v11i13.35103Research, Society and Development; Vol. 11 No. 13; e100111335103Research, Society and Development; Vol. 11 Núm. 13; e100111335103Research, Society and Development; v. 11 n. 13; e1001113351032525-3409reponame:Research, Society and Developmentinstname:Universidade Federal de Itajubá (UNIFEI)instacron:UNIFEIenghttps://rsdjournal.org/index.php/rsd/article/view/35103/29504Copyright (c) 2022 Sofia Rebiha Decesaro; Jamille Charal Lopes; Ana Patrícia Araújo Torquato Lopeshttps://creativecommons.org/licenses/by/4.0info:eu-repo/semantics/openAccessDecesaro, Sofia RebihaLopes, Jamille CharalLopes, Ana Patrícia Araújo Torquato2022-10-17T13:43:46Zoai:ojs.pkp.sfu.ca:article/35103Revistahttps://rsdjournal.org/index.php/rsd/indexPUBhttps://rsdjournal.org/index.php/rsd/oairsd.articles@gmail.com2525-34092525-3409opendoar:2024-01-17T09:50:08.439868Research, Society and Development - Universidade Federal de Itajubá (UNIFEI)false |
dc.title.none.fl_str_mv |
Social exclusion and inclusion: perception of family members living with a person with autism spectrum disorder Exclusión-inclusión social: percepción de los familiares que conviven con una persona con trastorno del espectro autista Exclusão-inclusão social: percepção de familiares que convivem com pessoa com transtorno do espectro autista |
title |
Social exclusion and inclusion: perception of family members living with a person with autism spectrum disorder |
spellingShingle |
Social exclusion and inclusion: perception of family members living with a person with autism spectrum disorder Decesaro, Sofia Rebiha Trastorno del espectro autista Familia Exclusión social Estigma social Eventos de cambio de vida. Transtorno do espectro autista Família Exclusão social Estigma social Experiências de vida. Autistic spectrum disorder Family Social exclusion Social stigma Life change events. |
title_short |
Social exclusion and inclusion: perception of family members living with a person with autism spectrum disorder |
title_full |
Social exclusion and inclusion: perception of family members living with a person with autism spectrum disorder |
title_fullStr |
Social exclusion and inclusion: perception of family members living with a person with autism spectrum disorder |
title_full_unstemmed |
Social exclusion and inclusion: perception of family members living with a person with autism spectrum disorder |
title_sort |
Social exclusion and inclusion: perception of family members living with a person with autism spectrum disorder |
author |
Decesaro, Sofia Rebiha |
author_facet |
Decesaro, Sofia Rebiha Lopes, Jamille Charal Lopes, Ana Patrícia Araújo Torquato |
author_role |
author |
author2 |
Lopes, Jamille Charal Lopes, Ana Patrícia Araújo Torquato |
author2_role |
author author |
dc.contributor.author.fl_str_mv |
Decesaro, Sofia Rebiha Lopes, Jamille Charal Lopes, Ana Patrícia Araújo Torquato |
dc.subject.por.fl_str_mv |
Trastorno del espectro autista Familia Exclusión social Estigma social Eventos de cambio de vida. Transtorno do espectro autista Família Exclusão social Estigma social Experiências de vida. Autistic spectrum disorder Family Social exclusion Social stigma Life change events. |
topic |
Trastorno del espectro autista Familia Exclusión social Estigma social Eventos de cambio de vida. Transtorno do espectro autista Família Exclusão social Estigma social Experiências de vida. Autistic spectrum disorder Family Social exclusion Social stigma Life change events. |
description |
Objective: Identify evidence of social inclusion and exclusion perceived by family members, due to living with a person diagnosed with Autism Spectrum Disorder (ASD). Methodology: The study was conducted following a qualitative approach, in which five families that live with a person diagnosed with ASD were part of our analysis, involving fathers (2), mothers (5), brothers (2) and grandmother (1). Data collection was carried out through recorded interviews, using the Critical Incident Technique, and data were organized using Bardin's thematic content analysis. Results: Two thematic categories emerged: “The context of autistic life and its adversities facing stigma and exclusion" and "A positive view of Autism Spectrum Disorder." The first addresses the adversities and difficulties faced in identifying the disorder and in the process of family adaptability. This category also takes into consideration society's and family's lack of knowledge about ASD, which leads to social exclusion. The second category exhibits lessons learned while living with a person diagnosed with ASD. Conclusion: Furthermore, it portrays the adaptation and growth occurred in intrafamily relationships. Therefore, daily living with a person with ASD is characterized by adversity, stigma and social exclusion. However, it also distinguishes the resilience and overcoming of family members. |
publishDate |
2022 |
dc.date.none.fl_str_mv |
2022-09-29 |
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 |
https://rsdjournal.org/index.php/rsd/article/view/35103 10.33448/rsd-v11i13.35103 |
url |
https://rsdjournal.org/index.php/rsd/article/view/35103 |
identifier_str_mv |
10.33448/rsd-v11i13.35103 |
dc.language.iso.fl_str_mv |
eng |
language |
eng |
dc.relation.none.fl_str_mv |
https://rsdjournal.org/index.php/rsd/article/view/35103/29504 |
dc.rights.driver.fl_str_mv |
Copyright (c) 2022 Sofia Rebiha Decesaro; Jamille Charal Lopes; Ana Patrícia Araújo Torquato Lopes https://creativecommons.org/licenses/by/4.0 info:eu-repo/semantics/openAccess |
rights_invalid_str_mv |
Copyright (c) 2022 Sofia Rebiha Decesaro; Jamille Charal Lopes; Ana Patrícia Araújo Torquato Lopes https://creativecommons.org/licenses/by/4.0 |
eu_rights_str_mv |
openAccess |
dc.format.none.fl_str_mv |
application/pdf |
dc.publisher.none.fl_str_mv |
Research, Society and Development |
publisher.none.fl_str_mv |
Research, Society and Development |
dc.source.none.fl_str_mv |
Research, Society and Development; Vol. 11 No. 13; e100111335103 Research, Society and Development; Vol. 11 Núm. 13; e100111335103 Research, Society and Development; v. 11 n. 13; e100111335103 2525-3409 reponame:Research, Society and Development instname:Universidade Federal de Itajubá (UNIFEI) instacron:UNIFEI |
instname_str |
Universidade Federal de Itajubá (UNIFEI) |
instacron_str |
UNIFEI |
institution |
UNIFEI |
reponame_str |
Research, Society and Development |
collection |
Research, Society and Development |
repository.name.fl_str_mv |
Research, Society and Development - Universidade Federal de Itajubá (UNIFEI) |
repository.mail.fl_str_mv |
rsd.articles@gmail.com |
_version_ |
1797052772142546944 |