Revelação do diagnóstico de HIV/AIDS na infância : impactos, cotidiano e perspectivas de jovens infectados verticalmente

Detalhes bibliográficos
Autor(a) principal: Negrini, Silvia Fabiana Biason de Moura
Data de Publicação: 2017
Tipo de documento: Tese
Idioma: por
Título da fonte: Repositório Institucional da UFSCAR
Texto Completo: https://repositorio.ufscar.br/handle/ufscar/9020
Resumo: Children living with HIV / AIDS are growing and demanding new interventions and health care strategies, such as the need to know their clinical status. Recent national and international studies have sought a better understanding of the issue of disclosure of HIV / AIDS diagnosis to vertically infected children and adolescents and their consequences. The objective of this research was to understand about the contributions and limits of a diagnostic disclosure process to children infected vertically by HIV / AIDS, developed by a multidisciplinary team of a tertiary hospital and approach, from the perspective of these current young people Social relations, daily challenges and future expectations. To do so, two studies were carried out: Study 1 aimed to identify the variations in CD4 and Viral Load rates of children infected vertically by HIV / AIDS, after participating in the process of diagnosis, developed by a multidisciplinary team of a hospital Ternary school in the interior of São Paulo - Brazil, as well as if this variation is associated with variables such as: gender, age, family composition and frequency in the groups, both of the children and the parents, and Study 2 aimed to investigate the impacts in daily life, the Challenges and future expectations, after the moment of revelation and in the present, from the perspective of young people, children at the time of revelation. The research was approved by the Research Ethics Committee of the Hospital das Clínicas of the Medical School of Ribeirão Preto - USP and both studies were carried out in this place. For Study 1, data were collected in 65 charts of young people, children at the time of diagnosis. The information was recorded in a specific form and stored in a database. The results are presented in a descriptive and analytical way and, to verify the association between the variables, the "Fisher's exact test" was used. In Study 2, 17 young people, aged between 16 and 24 years participated, being 10 females and 7 males. All participants were infected with HIV by vertical transmission, they were part of the diagnostic disclosure process focused on this study, and they continue to be followed at the same health service. The instruments used were an identification form and a semi-structured interview script. For the data analysis, the Collective Subject Discourse (DSC) technique was used. The results of Study 1 show that there was an association between the participation of the caregivers in the group of the diagnostic process and the improvement in the CD4 rates of the children, besides the stabilization in the levels of viral load and CD4, after the diagnosis was revealed. The results of Study 2 point to the benefits reported by the participants regarding disclosure by the family associated with the UETDI disclosure process. Nevertheless, it was verified that it is during adolescence that the concreteness of the diagnosis is placed in their lives and, as a daily challenge, reveal the common presence of social prejudice imposed on young people with HIV. It discusses the relevance of diagnostic disclosure processes and highlights the relevance of the disclosure proposal evaluated in this study. Suggestions are suggested for the improvement of the process, especially regarding the resumption of the diagnosis and its implications in adolescence. Furthermore, the challenge of coping with prejudice as collective responsibility and with the concrete involvement of public policies is discussed.
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spelling Negrini, Silvia Fabiana Biason de MouraMatsukura, Thelma Simõeshttp://lattes.cnpq.br/5611215381682164http://lattes.cnpq.br/1932654728198678d47cd862-8412-43ee-b34f-5a19b56cdc652017-08-17T18:37:19Z2017-08-17T18:37:19Z2017-02-14NEGRINI, Silvia Fabiana Biason de Moura. Revelação do diagnóstico de HIV/AIDS na infância : impactos, cotidiano e perspectivas de jovens infectados verticalmente. 2017. Tese (Doutorado em Educação Especial) – Universidade Federal de São Carlos, São Carlos, 2017. Disponível em: https://repositorio.ufscar.br/handle/ufscar/9020.https://repositorio.ufscar.br/handle/ufscar/9020Children living with HIV / AIDS are growing and demanding new interventions and health care strategies, such as the need to know their clinical status. Recent national and international studies have sought a better understanding of the issue of disclosure of HIV / AIDS diagnosis to vertically infected children and adolescents and their consequences. The objective of this research was to understand about the contributions and limits of a diagnostic disclosure process to children infected vertically by HIV / AIDS, developed by a multidisciplinary team of a tertiary hospital and approach, from the perspective of these current young people Social relations, daily challenges and future expectations. To do so, two studies were carried out: Study 1 aimed to identify the variations in CD4 and Viral Load rates of children infected vertically by HIV / AIDS, after participating in the process of diagnosis, developed by a multidisciplinary team of a hospital Ternary school in the interior of São Paulo - Brazil, as well as if this variation is associated with variables such as: gender, age, family composition and frequency in the groups, both of the children and the parents, and Study 2 aimed to investigate the impacts in daily life, the Challenges and future expectations, after the moment of revelation and in the present, from the perspective of young people, children at the time of revelation. The research was approved by the Research Ethics Committee of the Hospital das Clínicas of the Medical School of Ribeirão Preto - USP and both studies were carried out in this place. For Study 1, data were collected in 65 charts of young people, children at the time of diagnosis. The information was recorded in a specific form and stored in a database. The results are presented in a descriptive and analytical way and, to verify the association between the variables, the "Fisher's exact test" was used. In Study 2, 17 young people, aged between 16 and 24 years participated, being 10 females and 7 males. All participants were infected with HIV by vertical transmission, they were part of the diagnostic disclosure process focused on this study, and they continue to be followed at the same health service. The instruments used were an identification form and a semi-structured interview script. For the data analysis, the Collective Subject Discourse (DSC) technique was used. The results of Study 1 show that there was an association between the participation of the caregivers in the group of the diagnostic process and the improvement in the CD4 rates of the children, besides the stabilization in the levels of viral load and CD4, after the diagnosis was revealed. The results of Study 2 point to the benefits reported by the participants regarding disclosure by the family associated with the UETDI disclosure process. Nevertheless, it was verified that it is during adolescence that the concreteness of the diagnosis is placed in their lives and, as a daily challenge, reveal the common presence of social prejudice imposed on young people with HIV. It discusses the relevance of diagnostic disclosure processes and highlights the relevance of the disclosure proposal evaluated in this study. Suggestions are suggested for the improvement of the process, especially regarding the resumption of the diagnosis and its implications in adolescence. Furthermore, the challenge of coping with prejudice as collective responsibility and with the concrete involvement of public policies is discussed.Crianças que vivem com HIV/Aids estão crescendo e demandando novas intervenções e estratégias de cuidado em saúde, tal como a necessidade do conhecimento do seu status clínico. Estudos nacionais e internacionais recentes, têm buscado uma melhor compreensão acerca da temática da revelação de diagnóstico de HIV/Aids a crianças e adolescentes infectados verticalmente e suas decorrências. O objetivo desta pesquisa foi o de compreender acerca das contribuições e limites de um processo de revelação de diagnóstico a crianças infectadas verticalmente pelo HIV/AIDS, desenvolvido por uma equipe multidisciplinar de um hospital terciário e abordar, sob a perspectiva destes atuais jovens como se dão as relações sociais, desafios cotidianos e expectativas futuras. Para tanto, realizou-se 2 Estudos: o Estudo 1 objetivou identificar as variações nas taxas de CD4 e Carga Viral de crianças infectadas verticalmente pelo HIV/AIDS, após a participação no processo de revelação de diagnóstico, desenvolvido por uma equipe multidisciplinar de um hospital terciário no interior de São Paulo – Brasil, bem como se essa variação se associa com variáveis como: sexo, idade, composição familiar e frequência nos grupos, tanto das crianças quanto dos pais e, o Estudo 2 objetivou investigar os impactos no cotidiano, os desafios e as expectativas futuras, após o momento da revelação e no presente, sob a ótica dos jovens, crianças à época da revelação. A pesquisa foi aprovada pelo Comitê de Ética em Pesquisa do Hospital das Clínicas da Faculdade de Medicina de Ribeirão Preto – USP e ambos os estudos foram realizados neste local. Para o Estudo 1 foi realizada a coleta de dados em 65 prontuários de jovens, crianças à época da revelação do diagnóstico. As informações foram registradas em formulário específico e armazenadas em banco de dados. Os resultados são apresentados de maneira descritiva e analítica e, para verificar-se a associação entre as variáveis foi utilizado o “Teste Exato de Fisher”. No Estudo 2, participaram 17 jovens, com idades entre 16 e 24 anos, sendo 10 do sexo feminino e 7 do sexo masculino. Todos os participantes foram contaminados pelo HIV por transmissão vertical, fizeram parte do processo de revelação de diagnóstico focalizado neste estudo, e, continuam sendo acompanhados no mesmo serviço de saúde. Os instrumentos utilizados foram a uma ficha de identificação e um roteiro de entrevista semiestruturado. Para a análise dos dados utilizou-se a técnica do Discurso do Sujeito Coletivo (DSC). Os resultados do Estudo 1 revelam que houve associação entre a participação dos cuidadores no grupo do processo de revelação diagnóstico e a melhora nas taxas de CD4 das crianças, além da estabilização nos níveis de carga viral e CD4, após a revelação do diagnóstico. Os resultados do Estudo 2 apontam para os benefícios relatados pelos participantes quanto à revelação ter sido feita pela família, associada ao processo de revelação da UETDI. Não obstante, verificou-se que é no período da adolescência que a concretude do diagnóstico se coloca em suas vidas e, revelam como maior desafio cotidiano, a presença comum do preconceito social imposto aos jovens soropositivos. Discute-se sobre a relevância de processos de revelação de diagnóstico e destaca-se a pertinência da proposta de revelação avaliada neste estudo. Indicam-se sugestões para o aprimoramento do processo, especialmente ao que se refere à retomada sobre o diagnóstico e suas implicações no período da adolescência. Ainda, discute-se sobre o desafio de enfrentamento relativo ao preconceito como responsabilidade coletiva e com o envolvimento concreto de políticas públicas.Coordenação de Aperfeiçoamento de Pessoal de Nível Superior (CAPES)porUniversidade Federal de São CarlosCâmpus São CarlosPrograma de Pós-Graduação em Educação Especial - PPGEEsUFSCarAIDSCriançaAdolescenteRevelaçãoDiagnósticoEducação especialChildAdolescentDisclosureDiagnosisSpecial educationCIENCIAS HUMANAS::EDUCACAORevelação do diagnóstico de HIV/AIDS na infância : impactos, cotidiano e perspectivas de jovens infectados verticalmenteinfo:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/doctoralThesisOnline60060093201651-62e3-414c-81da-17fcdc392ad9info:eu-repo/semantics/openAccessreponame:Repositório Institucional da UFSCARinstname:Universidade Federal de São Carlos (UFSCAR)instacron:UFSCARORIGINALTeseSFBMN.pdfTeseSFBMN.pdfapplication/pdf1134410https://repositorio.ufscar.br/bitstream/ufscar/9020/1/TeseSFBMN.pdfbab3e4f2e5aa811ed5e25149e4cee0b0MD51LICENSElicense.txtlicense.txttext/plain; charset=utf-81957https://repositorio.ufscar.br/bitstream/ufscar/9020/2/license.txtae0398b6f8b235e40ad82cba6c50031dMD52TEXTTeseSFBMN.pdf.txtTeseSFBMN.pdf.txtExtracted texttext/plain229576https://repositorio.ufscar.br/bitstream/ufscar/9020/3/TeseSFBMN.pdf.txt9ea5c16613cb6f5c2ed0b0fb4603864aMD53THUMBNAILTeseSFBMN.pdf.jpgTeseSFBMN.pdf.jpgIM Thumbnailimage/jpeg7650https://repositorio.ufscar.br/bitstream/ufscar/9020/4/TeseSFBMN.pdf.jpg6a67b18a859fc42792d717b357739768MD54ufscar/90202023-09-18 18:31:25.486oai:repositorio.ufscar.br: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Repositório InstitucionalPUBhttps://repositorio.ufscar.br/oai/requestopendoar:43222023-09-18T18:31:25Repositório Institucional da UFSCAR - Universidade Federal de São Carlos (UFSCAR)false
dc.title.por.fl_str_mv Revelação do diagnóstico de HIV/AIDS na infância : impactos, cotidiano e perspectivas de jovens infectados verticalmente
title Revelação do diagnóstico de HIV/AIDS na infância : impactos, cotidiano e perspectivas de jovens infectados verticalmente
spellingShingle Revelação do diagnóstico de HIV/AIDS na infância : impactos, cotidiano e perspectivas de jovens infectados verticalmente
Negrini, Silvia Fabiana Biason de Moura
AIDS
Criança
Adolescente
Revelação
Diagnóstico
Educação especial
Child
Adolescent
Disclosure
Diagnosis
Special education
CIENCIAS HUMANAS::EDUCACAO
title_short Revelação do diagnóstico de HIV/AIDS na infância : impactos, cotidiano e perspectivas de jovens infectados verticalmente
title_full Revelação do diagnóstico de HIV/AIDS na infância : impactos, cotidiano e perspectivas de jovens infectados verticalmente
title_fullStr Revelação do diagnóstico de HIV/AIDS na infância : impactos, cotidiano e perspectivas de jovens infectados verticalmente
title_full_unstemmed Revelação do diagnóstico de HIV/AIDS na infância : impactos, cotidiano e perspectivas de jovens infectados verticalmente
title_sort Revelação do diagnóstico de HIV/AIDS na infância : impactos, cotidiano e perspectivas de jovens infectados verticalmente
author Negrini, Silvia Fabiana Biason de Moura
author_facet Negrini, Silvia Fabiana Biason de Moura
author_role author
dc.contributor.authorlattes.por.fl_str_mv http://lattes.cnpq.br/1932654728198678
dc.contributor.author.fl_str_mv Negrini, Silvia Fabiana Biason de Moura
dc.contributor.advisor1.fl_str_mv Matsukura, Thelma Simões
dc.contributor.advisor1Lattes.fl_str_mv http://lattes.cnpq.br/5611215381682164
dc.contributor.authorID.fl_str_mv d47cd862-8412-43ee-b34f-5a19b56cdc65
contributor_str_mv Matsukura, Thelma Simões
dc.subject.por.fl_str_mv AIDS
Criança
Adolescente
Revelação
Diagnóstico
Educação especial
topic AIDS
Criança
Adolescente
Revelação
Diagnóstico
Educação especial
Child
Adolescent
Disclosure
Diagnosis
Special education
CIENCIAS HUMANAS::EDUCACAO
dc.subject.eng.fl_str_mv Child
Adolescent
Disclosure
Diagnosis
Special education
dc.subject.cnpq.fl_str_mv CIENCIAS HUMANAS::EDUCACAO
description Children living with HIV / AIDS are growing and demanding new interventions and health care strategies, such as the need to know their clinical status. Recent national and international studies have sought a better understanding of the issue of disclosure of HIV / AIDS diagnosis to vertically infected children and adolescents and their consequences. The objective of this research was to understand about the contributions and limits of a diagnostic disclosure process to children infected vertically by HIV / AIDS, developed by a multidisciplinary team of a tertiary hospital and approach, from the perspective of these current young people Social relations, daily challenges and future expectations. To do so, two studies were carried out: Study 1 aimed to identify the variations in CD4 and Viral Load rates of children infected vertically by HIV / AIDS, after participating in the process of diagnosis, developed by a multidisciplinary team of a hospital Ternary school in the interior of São Paulo - Brazil, as well as if this variation is associated with variables such as: gender, age, family composition and frequency in the groups, both of the children and the parents, and Study 2 aimed to investigate the impacts in daily life, the Challenges and future expectations, after the moment of revelation and in the present, from the perspective of young people, children at the time of revelation. The research was approved by the Research Ethics Committee of the Hospital das Clínicas of the Medical School of Ribeirão Preto - USP and both studies were carried out in this place. For Study 1, data were collected in 65 charts of young people, children at the time of diagnosis. The information was recorded in a specific form and stored in a database. The results are presented in a descriptive and analytical way and, to verify the association between the variables, the "Fisher's exact test" was used. In Study 2, 17 young people, aged between 16 and 24 years participated, being 10 females and 7 males. All participants were infected with HIV by vertical transmission, they were part of the diagnostic disclosure process focused on this study, and they continue to be followed at the same health service. The instruments used were an identification form and a semi-structured interview script. For the data analysis, the Collective Subject Discourse (DSC) technique was used. The results of Study 1 show that there was an association between the participation of the caregivers in the group of the diagnostic process and the improvement in the CD4 rates of the children, besides the stabilization in the levels of viral load and CD4, after the diagnosis was revealed. The results of Study 2 point to the benefits reported by the participants regarding disclosure by the family associated with the UETDI disclosure process. Nevertheless, it was verified that it is during adolescence that the concreteness of the diagnosis is placed in their lives and, as a daily challenge, reveal the common presence of social prejudice imposed on young people with HIV. It discusses the relevance of diagnostic disclosure processes and highlights the relevance of the disclosure proposal evaluated in this study. Suggestions are suggested for the improvement of the process, especially regarding the resumption of the diagnosis and its implications in adolescence. Furthermore, the challenge of coping with prejudice as collective responsibility and with the concrete involvement of public policies is discussed.
publishDate 2017
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dc.date.available.fl_str_mv 2017-08-17T18:37:19Z
dc.date.issued.fl_str_mv 2017-02-14
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dc.identifier.citation.fl_str_mv NEGRINI, Silvia Fabiana Biason de Moura. Revelação do diagnóstico de HIV/AIDS na infância : impactos, cotidiano e perspectivas de jovens infectados verticalmente. 2017. Tese (Doutorado em Educação Especial) – Universidade Federal de São Carlos, São Carlos, 2017. Disponível em: https://repositorio.ufscar.br/handle/ufscar/9020.
dc.identifier.uri.fl_str_mv https://repositorio.ufscar.br/handle/ufscar/9020
identifier_str_mv NEGRINI, Silvia Fabiana Biason de Moura. Revelação do diagnóstico de HIV/AIDS na infância : impactos, cotidiano e perspectivas de jovens infectados verticalmente. 2017. Tese (Doutorado em Educação Especial) – Universidade Federal de São Carlos, São Carlos, 2017. Disponível em: https://repositorio.ufscar.br/handle/ufscar/9020.
url https://repositorio.ufscar.br/handle/ufscar/9020
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dc.publisher.none.fl_str_mv Universidade Federal de São Carlos
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dc.publisher.program.fl_str_mv Programa de Pós-Graduação em Educação Especial - PPGEEs
dc.publisher.initials.fl_str_mv UFSCar
publisher.none.fl_str_mv Universidade Federal de São Carlos
Câmpus São Carlos
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