Estigma e estresse na maternagem de pessoas com transtorno do espectro do autismo

Detalhes bibliográficos
Ano de defesa: 2023
Autor(a) principal: Gabriela Brasil Mokarin
Orientador(a): Não Informado pela instituição
Banca de defesa: Não Informado pela instituição
Tipo de documento: Dissertação
Tipo de acesso: Acesso aberto
Idioma: por
Instituição de defesa: Universidade Federal de Minas Gerais
Brasil
FAF - DEPARTAMENTO DE PSICOLOGIA
Programa de Pós-Graduação em Psicologia
UFMG
Programa de Pós-Graduação: Não Informado pela instituição
Departamento: Não Informado pela instituição
País: Não Informado pela instituição
Palavras-chave em Português:
Link de acesso: http://hdl.handle.net/1843/66433
https://orcid.org/0000-0002-6857-2158
Resumo: This master's dissertation aims to provide a comprehensive description of atypical mothering experiences among mothers of children diagnosed with Autism Spectrum Disorder (ASD), with a specific focus on their encounters with stress and self-stigma. The study is centered within the Brazilian context and employs a mixed-methods approach to explore the intricacies, challenges, and coping strategies adopted by mothers of individuals with ASD, and how these experiences impact their levels of stress and self-stigma.Participants were recruited through targeted outreach on social media platforms related to ASD, utilizing an online survey created with Google Forms®. Initially, an 18-item questionnaire was distributed online through social media channels, targeting mothers of children diagnosed with ASD. Additionally, two structured scales were applied: (a) the Affiliate Stigma Scale and (b) the Parental Stress Scale (EEPa). While these scales had not been standardized, they were adapted and validated for the Brazilian Portuguese context. Subsequently, six mothers were randomly selected from the 398 participants, consisting of three with higher stress levels and three with lower stress levels, as assessed in a previous protocol. Semi-structured interviews, lasting approximately forty minutes on average, were conducted based on a prepared script. Through content analysis of the interviews, nine categories emerged in this study, including overload, health issues, support, identification, concerns, difficulties, isolation, constraints, prejudice, self-stigma, stigma, romanticization, advocacy, coping strategies, access, stress, inequality, and annulment.The results revealed that mothers play a crucial social role in advocating for the rights and appropriate treatment for their children, employing resistance strategies and social engagement. Notably, 79.8% of the interviewed mothers exhibited low levels of stress, suggesting the need for further studies encompassing the dimension of resilience in the context of constant stress. Other significant findings include the identification of 5% of the sample having children who do not attend school, uneven distribution of caregiving responsibilities between fathers and mothers, and the primary source of information being the internet, possibly without the support of formal healthcare teams. The results underscore the close association between experiences of discrimination and stigma and negative emotional consequences related to caring for children with ASD, as well as the social isolation faced by women and families in this situation.
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spelling Estigma e estresse na maternagem de pessoas com transtorno do espectro do autismoStigma and stress in mothering people with autism spectrum disorderTranstorno do Espectro Autista (TEA)MaternagemAutoestigmaPsicologia - TesesTranstornos do espectro autista - TesesStress (Psicologia) - TesesThis master's dissertation aims to provide a comprehensive description of atypical mothering experiences among mothers of children diagnosed with Autism Spectrum Disorder (ASD), with a specific focus on their encounters with stress and self-stigma. The study is centered within the Brazilian context and employs a mixed-methods approach to explore the intricacies, challenges, and coping strategies adopted by mothers of individuals with ASD, and how these experiences impact their levels of stress and self-stigma.Participants were recruited through targeted outreach on social media platforms related to ASD, utilizing an online survey created with Google Forms®. Initially, an 18-item questionnaire was distributed online through social media channels, targeting mothers of children diagnosed with ASD. Additionally, two structured scales were applied: (a) the Affiliate Stigma Scale and (b) the Parental Stress Scale (EEPa). While these scales had not been standardized, they were adapted and validated for the Brazilian Portuguese context. Subsequently, six mothers were randomly selected from the 398 participants, consisting of three with higher stress levels and three with lower stress levels, as assessed in a previous protocol. Semi-structured interviews, lasting approximately forty minutes on average, were conducted based on a prepared script. Through content analysis of the interviews, nine categories emerged in this study, including overload, health issues, support, identification, concerns, difficulties, isolation, constraints, prejudice, self-stigma, stigma, romanticization, advocacy, coping strategies, access, stress, inequality, and annulment.The results revealed that mothers play a crucial social role in advocating for the rights and appropriate treatment for their children, employing resistance strategies and social engagement. Notably, 79.8% of the interviewed mothers exhibited low levels of stress, suggesting the need for further studies encompassing the dimension of resilience in the context of constant stress. Other significant findings include the identification of 5% of the sample having children who do not attend school, uneven distribution of caregiving responsibilities between fathers and mothers, and the primary source of information being the internet, possibly without the support of formal healthcare teams. The results underscore the close association between experiences of discrimination and stigma and negative emotional consequences related to caring for children with ASD, as well as the social isolation faced by women and families in this situation.Esta dissertação de mestrado tem como objetivo geral descrever a maternagem atípica de mães que têm filhos diagnosticados com Transtorno do Espectro Autista (TEA), com foco nas vivências relacionadas ao estresse e ao autoestigma. O estudo se concentra no contexto brasileiro. Por meio de uma investigação quantitativa e qualitativa, buscamos compreender as complexidades, desafios e estratégias adotadas por mães de pessoas com TEA, e como essas experiências influenciam seu nível de estresse e autoestigma. As participantes foram selecionadas por meio de uma divulgação em redes sociais específicas sobre TEA, utilizando um formulário online no Google Forms®. Inicialmente, um questionário contendo 18 questões foi divulgado de forma online nas redes sociais, direcionado a mães de crianças diagnosticadas com TEA. Além disso, foram aplicadas duas escalas estruturadas: (a) Affiliate Stigma Scale e (b) Escala de Estresse Parental (EEPa). Embora as escalas não tenham sido normatizadas, foram adaptadas e validadas para o contexto do português brasileiro. Posteriormente, foram selecionadas aleatoriamente seis mães dentre as 398 participantes, três com níveis de estresse mais alto e três com níveis de estresse mais baixos, aferidos em protocolo aplicado em etapa anterior. As entrevistas foram conduzidas com base em um roteiro semidirigido, com duração média de quarenta minutos. Por meio de análise de conteúdo das entrevistas, foram encontradas nove categorias neste estudo, a saber: sobrecarga, adoecimento, apoio, identificação, preocupações, dificuldades, isolamento, constrangimentos, preconceito, autoestigma, estigma, romantização, militância, estratégias de enfrentamento, acesso, estresse, desigualdade e anulação. Os resultados revelaram que as mães desempenham um papel social crucial na defesa dos direitos e tratamentos adequados para seus filhos, empregando estratégias de resistência e engajamento social, sendo que 79,8% das entrevistadas apresentaram um baixo nível de estresse, o que indica necessidade de novos estudos que englobem a dimensão da resiliência no cenário de estresse constante. Outros resultados relevantes incluem a identificação de 5% da amostra com crianças que não frequentam a escola; a distribuição desigual de responsabilidades referentes ao cuidado entre pais e mães; a busca de informações, principalmente por meio da internet, possivelmente, sem o suporte de orientações formais de equipes de saúde. Os resultados evidenciaram que a vivência da discriminação e do estigma estão intimamente ligados a consequências emocionais negativas relacionadas ao cuidado de crianças com TEA, bem como ao isolamento social enfrentado por mulheres e famílias nessa situação.Universidade Federal de Minas GeraisBrasilFAF - DEPARTAMENTO DE PSICOLOGIAPrograma de Pós-Graduação em PsicologiaUFMGMaria Luísa Magalhães Nogueirahttp://lattes.cnpq.br/0658721467035688Ana Amélia Cardoso RodriguesAdriana Dias Gomide AraújoRosangela Gomes da Mota de SouzaGabriela Brasil Mokarin2024-03-22T21:40:31Z2024-03-22T21:40:31Z2023-10-04info:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/masterThesisapplication/pdfhttp://hdl.handle.net/1843/66433https://orcid.org/0000-0002-6857-2158porhttp://creativecommons.org/licenses/by-nc-nd/3.0/pt/info:eu-repo/semantics/openAccessreponame:Repositório Institucional da UFMGinstname:Universidade Federal de Minas Gerais (UFMG)instacron:UFMG2024-03-22T21:40:31Zoai:repositorio.ufmg.br:1843/66433Repositório InstitucionalPUBhttps://repositorio.ufmg.br/oairepositorio@ufmg.bropendoar:2024-03-22T21:40:31Repositório Institucional da UFMG - Universidade Federal de Minas Gerais (UFMG)false
dc.title.none.fl_str_mv Estigma e estresse na maternagem de pessoas com transtorno do espectro do autismo
Stigma and stress in mothering people with autism spectrum disorder
title Estigma e estresse na maternagem de pessoas com transtorno do espectro do autismo
spellingShingle Estigma e estresse na maternagem de pessoas com transtorno do espectro do autismo
Gabriela Brasil Mokarin
Transtorno do Espectro Autista (TEA)
Maternagem
Autoestigma
Psicologia - Teses
Transtornos do espectro autista - Teses
Stress (Psicologia) - Teses
title_short Estigma e estresse na maternagem de pessoas com transtorno do espectro do autismo
title_full Estigma e estresse na maternagem de pessoas com transtorno do espectro do autismo
title_fullStr Estigma e estresse na maternagem de pessoas com transtorno do espectro do autismo
title_full_unstemmed Estigma e estresse na maternagem de pessoas com transtorno do espectro do autismo
title_sort Estigma e estresse na maternagem de pessoas com transtorno do espectro do autismo
author Gabriela Brasil Mokarin
author_facet Gabriela Brasil Mokarin
author_role author
dc.contributor.none.fl_str_mv Maria Luísa Magalhães Nogueira
http://lattes.cnpq.br/0658721467035688
Ana Amélia Cardoso Rodrigues
Adriana Dias Gomide Araújo
Rosangela Gomes da Mota de Souza
dc.contributor.author.fl_str_mv Gabriela Brasil Mokarin
dc.subject.por.fl_str_mv Transtorno do Espectro Autista (TEA)
Maternagem
Autoestigma
Psicologia - Teses
Transtornos do espectro autista - Teses
Stress (Psicologia) - Teses
topic Transtorno do Espectro Autista (TEA)
Maternagem
Autoestigma
Psicologia - Teses
Transtornos do espectro autista - Teses
Stress (Psicologia) - Teses
description This master's dissertation aims to provide a comprehensive description of atypical mothering experiences among mothers of children diagnosed with Autism Spectrum Disorder (ASD), with a specific focus on their encounters with stress and self-stigma. The study is centered within the Brazilian context and employs a mixed-methods approach to explore the intricacies, challenges, and coping strategies adopted by mothers of individuals with ASD, and how these experiences impact their levels of stress and self-stigma.Participants were recruited through targeted outreach on social media platforms related to ASD, utilizing an online survey created with Google Forms®. Initially, an 18-item questionnaire was distributed online through social media channels, targeting mothers of children diagnosed with ASD. Additionally, two structured scales were applied: (a) the Affiliate Stigma Scale and (b) the Parental Stress Scale (EEPa). While these scales had not been standardized, they were adapted and validated for the Brazilian Portuguese context. Subsequently, six mothers were randomly selected from the 398 participants, consisting of three with higher stress levels and three with lower stress levels, as assessed in a previous protocol. Semi-structured interviews, lasting approximately forty minutes on average, were conducted based on a prepared script. Through content analysis of the interviews, nine categories emerged in this study, including overload, health issues, support, identification, concerns, difficulties, isolation, constraints, prejudice, self-stigma, stigma, romanticization, advocacy, coping strategies, access, stress, inequality, and annulment.The results revealed that mothers play a crucial social role in advocating for the rights and appropriate treatment for their children, employing resistance strategies and social engagement. Notably, 79.8% of the interviewed mothers exhibited low levels of stress, suggesting the need for further studies encompassing the dimension of resilience in the context of constant stress. Other significant findings include the identification of 5% of the sample having children who do not attend school, uneven distribution of caregiving responsibilities between fathers and mothers, and the primary source of information being the internet, possibly without the support of formal healthcare teams. The results underscore the close association between experiences of discrimination and stigma and negative emotional consequences related to caring for children with ASD, as well as the social isolation faced by women and families in this situation.
publishDate 2023
dc.date.none.fl_str_mv 2023-10-04
2024-03-22T21:40:31Z
2024-03-22T21:40:31Z
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dc.identifier.uri.fl_str_mv http://hdl.handle.net/1843/66433
https://orcid.org/0000-0002-6857-2158
url http://hdl.handle.net/1843/66433
https://orcid.org/0000-0002-6857-2158
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dc.publisher.none.fl_str_mv Universidade Federal de Minas Gerais
Brasil
FAF - DEPARTAMENTO DE PSICOLOGIA
Programa de Pós-Graduação em Psicologia
UFMG
publisher.none.fl_str_mv Universidade Federal de Minas Gerais
Brasil
FAF - DEPARTAMENTO DE PSICOLOGIA
Programa de Pós-Graduação em Psicologia
UFMG
dc.source.none.fl_str_mv reponame:Repositório Institucional da UFMG
instname:Universidade Federal de Minas Gerais (UFMG)
instacron:UFMG
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institution UFMG
reponame_str Repositório Institucional da UFMG
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repository.name.fl_str_mv Repositório Institucional da UFMG - Universidade Federal de Minas Gerais (UFMG)
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