Social exclusion and inclusion: perception of family members living with a person with autism spectrum disorder

Detalhes bibliográficos
Autor(a) principal: Decesaro, Sofia Rebiha
Data de Publicação: 2022
Outros Autores: Lopes, Jamille Charal, Lopes, Ana Patrícia Araújo Torquato
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.
id UNIFEI_309cdaed51a2fb8085c83b26604fdf87
oai_identifier_str oai:ojs.pkp.sfu.ca:article/35103
network_acronym_str UNIFEI
network_name_str Research, Society and Development
repository_id_str
spelling 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