Correntes de solidariedade? grupos de apoio a pacientes com doenças inflamatórias intestinais no Facebook

Detalhes bibliográficos
Autor(a) principal: Ribeiro, Bruna Angélica Casonato
Data de Publicação: 2024
Outros Autores: Donadone, Julio Cesar
Tipo de documento: Tese
Idioma: por
Título da fonte: Repositório Institucional da UFSCAR
Texto Completo: https://repositorio.ufscar.br/handle/ufscar/19682
Resumo: Science advances with discoveries that allow man to extend his lifespan and, in this sense, issues of life and death are frequently under discussion, including research related to diseases, in some cases contemplating chronic diseases, which reflect a primordial human need. , an understanding of the disease and its impacts on society. Receiving a diagnosis of an Inflammatory Bowel Disease is complex. But after all, how is it possible to lead a “normal” life, exercising my old roles in society, before the diagnosis? Did this whirlwind of emotions, fears and anxieties happen to all patients? How and in which space could I be heard without prejudice and judgment about my new life? Facebook has been a platform for people residing on the network that allows for the existence of a large number of communities designed to discuss issues related to health, making it necessary to understand how they work and how the information obtained is used. Thus, the main contribution of this study was to present the basic characteristics of support groups for patients with Crohn's Disease, focusing on users and their posts. An exploratory research was carried out focused on identifying discussion groups on Facebook regarding Crohn's Disease. As they are closed communities, two groups were selected, one consisting of more than 2,700 average members by a doctor specializing in inflammatory bowel diseases and the other consisting of a high number of members, of more than 14,600, therefore, the choice was made. Based on the criteria of visibility and empirical research. Data collection corresponded to the period from December 2022 to March 2023. Discourse analysis of posts and comments from the two secret groups was used as a data collection instrument. This research includes several themes related to patients' use of Facebook that can support self-management of the disease. In both groups, the most discussed topics in the posts were medications, symptoms and exams. However, the most relevant posts and comments in the groups differ significantly, demonstrating the presence and relevance of emotional work and the “rules of feelings”.
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spelling Ribeiro, Bruna Angélica CasonatoDonadone, Julio Cesarhttp://lattes.cnpq.br/7643906508178259http://lattes.cnpq.br/6643009478731523https://orcid.org/0000-0001-6681-15172024-05-20T11:53:42Z2024-05-20T11:53:42Z2024-05-07https://repositorio.ufscar.br/handle/ufscar/19682Science advances with discoveries that allow man to extend his lifespan and, in this sense, issues of life and death are frequently under discussion, including research related to diseases, in some cases contemplating chronic diseases, which reflect a primordial human need. , an understanding of the disease and its impacts on society. Receiving a diagnosis of an Inflammatory Bowel Disease is complex. But after all, how is it possible to lead a “normal” life, exercising my old roles in society, before the diagnosis? Did this whirlwind of emotions, fears and anxieties happen to all patients? How and in which space could I be heard without prejudice and judgment about my new life? Facebook has been a platform for people residing on the network that allows for the existence of a large number of communities designed to discuss issues related to health, making it necessary to understand how they work and how the information obtained is used. Thus, the main contribution of this study was to present the basic characteristics of support groups for patients with Crohn's Disease, focusing on users and their posts. An exploratory research was carried out focused on identifying discussion groups on Facebook regarding Crohn's Disease. As they are closed communities, two groups were selected, one consisting of more than 2,700 average members by a doctor specializing in inflammatory bowel diseases and the other consisting of a high number of members, of more than 14,600, therefore, the choice was made. Based on the criteria of visibility and empirical research. Data collection corresponded to the period from December 2022 to March 2023. Discourse analysis of posts and comments from the two secret groups was used as a data collection instrument. This research includes several themes related to patients' use of Facebook that can support self-management of the disease. In both groups, the most discussed topics in the posts were medications, symptoms and exams. However, the most relevant posts and comments in the groups differ significantly, demonstrating the presence and relevance of emotional work and the “rules of feelings”.A ciência avança com descobertas que permitem ao homem prolongar seu tempo de vida e, nesse sentido, questões de vida e morte estão frequentemente em discussão, incluindo as pesquisas relacionadas a doenças, em alguns casos contemplando as doenças crônicas, que refletem uma necessidade humana primordial, a de compreensão da doença e de seus impactos na sociedade. Receber o diagnóstico de uma Doença Inflamatória Intestinal é complexo. Mas afinal, como é possível levar uma vida “normal”, exercendo meus antigos papéis na sociedade, antes do diagnóstico? Esse turbilhão de emoções, medos e ansiedades aconteceriam com todos os pacientes? Como e em qual espaço eu poderia ser ouvida sem preconceitos e julgamentos sobre a minha nova vida? O Facebook tem sido uma plataforma para as pessoas estarem em rede que possibilita a existência de grande número de comunidades destinadas a discutir assuntos relacionados à saúde, fazendo-se necessário entender como elas funcionam e de que forma são utilizadas as informações obtidas. Desta forma, a contribuição principal deste estudo foi a de apresentar as características básicas de grupos de apoio a pacientes com Doença de Crohn, concentrando-se nos usuários e em suas postagens. Foi realizada uma pesquisa exploratória visando identificar grupos de discussão no Facebook referentes à Doença de Crohn. Por se tratar de comunidades fechadas foram selecionados dois grupos, sendo um composto por mais de 2.700 membros mediado por um médico especialista em doenças inflamatórias intestinais e o outro composto por um número elevado de membros, de mais de 14.600, portanto, a escolha deu-se pelos critérios de visibilidade e de pesquisa empírica. A coleta de dados correspondeu ao período de dezembro de 2022 a março de 2023. Como instrumento de coleta de dados foi utilizada a análise de discursos das postagens e comentários dos dois grupos secretos. Esta pesquisa identificou diversos temas relacionados ao uso do Facebook pelos pacientes que podem apoiar a autogestão da doença. Em ambos os grupos os temas das postagens mais abordados foram os medicamentos, os sintomas e os exames. Porém, as postagens e comentários mais relevantes nos grupos divergem significativamente demonstrando a presença e relevância do trabalho emocional e as “regras de sentimentos”.Não recebi financiamentoporUniversidade Federal de São CarlosCâmpus São CarlosPrograma de Pós-Graduação em Ciência, Tecnologia e Sociedade - PPGCTSUFSCarAttribution 3.0 Brazilhttp://creativecommons.org/licenses/by/3.0/br/info:eu-repo/semantics/openAccessDoenças inflamatórias intestinaisDoença de CrohnGrupos de apoioSuportePacienteCIENCIAS HUMANASCorrentes de solidariedade? grupos de apoio a pacientes com doenças inflamatórias intestinais no FacebookChains of solidarity? support groups for patients with inflammatory bowel diseases on Facebookinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/doctoralThesisreponame:Repositório Institucional da UFSCARinstname:Universidade Federal de São Carlos (UFSCAR)instacron:UFSCARORIGINALTese finalizada com aprovação.pdfTese finalizada com aprovação.pdfTeseapplication/pdf3495622https://repositorio.ufscar.br/bitstream/ufscar/19682/1/Tese%20finalizada%20com%20aprova%c3%a7%c3%a3o.pdfa70186dcabc7a590687cbd9e37255fccMD51CC-LICENSElicense_rdflicense_rdfapplication/rdf+xml; charset=utf-8913https://repositorio.ufscar.br/bitstream/ufscar/19682/2/license_rdf3185b4de2190c2d366d1d324db01f8b8MD52ufscar/196822024-05-20 11:56:50.07oai:repositorio.ufscar.br:ufscar/19682Repositório InstitucionalPUBhttps://repositorio.ufscar.br/oai/requestopendoar:43222024-05-20T11:56:50Repositório Institucional da UFSCAR - Universidade Federal de São Carlos (UFSCAR)false
dc.title.por.fl_str_mv Correntes de solidariedade? grupos de apoio a pacientes com doenças inflamatórias intestinais no Facebook
dc.title.alternative.eng.fl_str_mv Chains of solidarity? support groups for patients with inflammatory bowel diseases on Facebook
title Correntes de solidariedade? grupos de apoio a pacientes com doenças inflamatórias intestinais no Facebook
spellingShingle Correntes de solidariedade? grupos de apoio a pacientes com doenças inflamatórias intestinais no Facebook
Ribeiro, Bruna Angélica Casonato
Doenças inflamatórias intestinais
Doença de Crohn
Grupos de apoio
Suporte
Paciente
CIENCIAS HUMANAS
title_short Correntes de solidariedade? grupos de apoio a pacientes com doenças inflamatórias intestinais no Facebook
title_full Correntes de solidariedade? grupos de apoio a pacientes com doenças inflamatórias intestinais no Facebook
title_fullStr Correntes de solidariedade? grupos de apoio a pacientes com doenças inflamatórias intestinais no Facebook
title_full_unstemmed Correntes de solidariedade? grupos de apoio a pacientes com doenças inflamatórias intestinais no Facebook
title_sort Correntes de solidariedade? grupos de apoio a pacientes com doenças inflamatórias intestinais no Facebook
author Ribeiro, Bruna Angélica Casonato
author_facet Ribeiro, Bruna Angélica Casonato
Donadone, Julio Cesar
author_role author
author2 Donadone, Julio Cesar
author2_role author
dc.contributor.authorlattes.por.fl_str_mv http://lattes.cnpq.br/6643009478731523
dc.contributor.authororcid.por.fl_str_mv https://orcid.org/0000-0001-6681-1517
dc.contributor.author.fl_str_mv Ribeiro, Bruna Angélica Casonato
Donadone, Julio Cesar
dc.contributor.advisor1Lattes.fl_str_mv http://lattes.cnpq.br/7643906508178259
dc.subject.por.fl_str_mv Doenças inflamatórias intestinais
Doença de Crohn
Grupos de apoio
Suporte
Paciente
topic Doenças inflamatórias intestinais
Doença de Crohn
Grupos de apoio
Suporte
Paciente
CIENCIAS HUMANAS
dc.subject.cnpq.fl_str_mv CIENCIAS HUMANAS
description Science advances with discoveries that allow man to extend his lifespan and, in this sense, issues of life and death are frequently under discussion, including research related to diseases, in some cases contemplating chronic diseases, which reflect a primordial human need. , an understanding of the disease and its impacts on society. Receiving a diagnosis of an Inflammatory Bowel Disease is complex. But after all, how is it possible to lead a “normal” life, exercising my old roles in society, before the diagnosis? Did this whirlwind of emotions, fears and anxieties happen to all patients? How and in which space could I be heard without prejudice and judgment about my new life? Facebook has been a platform for people residing on the network that allows for the existence of a large number of communities designed to discuss issues related to health, making it necessary to understand how they work and how the information obtained is used. Thus, the main contribution of this study was to present the basic characteristics of support groups for patients with Crohn's Disease, focusing on users and their posts. An exploratory research was carried out focused on identifying discussion groups on Facebook regarding Crohn's Disease. As they are closed communities, two groups were selected, one consisting of more than 2,700 average members by a doctor specializing in inflammatory bowel diseases and the other consisting of a high number of members, of more than 14,600, therefore, the choice was made. Based on the criteria of visibility and empirical research. Data collection corresponded to the period from December 2022 to March 2023. Discourse analysis of posts and comments from the two secret groups was used as a data collection instrument. This research includes several themes related to patients' use of Facebook that can support self-management of the disease. In both groups, the most discussed topics in the posts were medications, symptoms and exams. However, the most relevant posts and comments in the groups differ significantly, demonstrating the presence and relevance of emotional work and the “rules of feelings”.
publishDate 2024
dc.date.accessioned.fl_str_mv 2024-05-20T11:53:42Z
dc.date.available.fl_str_mv 2024-05-20T11:53:42Z
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dc.publisher.none.fl_str_mv Universidade Federal de São Carlos
Câmpus São Carlos
dc.publisher.program.fl_str_mv Programa de Pós-Graduação em Ciência, Tecnologia e Sociedade - PPGCTS
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