Convivendo com a Aids e seu tratamento : experiência de portadores e familiares
Autor(a) principal: | |
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Data de Publicação: | 2007 |
Tipo de documento: | Dissertação |
Idioma: | por |
Título da fonte: | Repositório Institucional da Universidade Estadual de Maringá (RI-UEM) |
Texto Completo: | http://repositorio.uem.br:8080/jspui/handle/1/2357 |
Resumo: | The objective of this study was to understand the aspects that influence patients with Aids and their relatives whether or not to take part in antiretroviral therapy. It is an exploratorydescriptive study, of a qualitative nature, undertaken with 10 bearers of HIV/Aids, monitored at the Specialized Care Service (SCS) for Aids in Campo Mourão, Paraná State, and their respective family caretakers. Data was collected in two stages, during the months of June 2006 and April 2007, using SCS document sources to describe the users, and two interview scripts - one for people living with Aids and another for their caretakers. The interviews, of the semi-structured type, were conducted individually with the patient, and later with the relative, in the home, according to the availability of both subjects and researchers. They lasted on average 40 minutes, and were recorded after consent was given. When selecting subjects, the fact that they attended the data collection stages along with their family caretaker was taken in consideration. The Thematic Analysis, according to (MINAYO, 2004) was used as reference for data analysis. The development of the study followed the ethical precepts underlined by Resolution n° 196/96, and the project was approved by the Committee of Ethics in Research with human beings of the State University of Maringá (decision 208/2006). Seven men and three women took part in the study, with ages between 26 and 60; seven were married, two were in stable unions and one was divorced. In regard to education, six of them had completed middle school and four had graduated from high school. As for the caretakers, nine were companions and one was a sister of the subject; they were between 25 and 60 years old, had little formal education and none of them were officially employed, although two of them worked as cleaning ladies, but without formal work registration. The analysis of the interviews allowed the identification of two broad categories: a) The impact of the discovery of positive status for the bearer and his/her family, showing that in spite of the current strategy by the National Program for STDs/Aids of valuing prevention, out of the 10 interviewees, seven found out their positive HIV status after the occurrence of opportunistic diseases, two women during prenatal care and only one at the Center for Testing and Counseling. This category is comprised of the following sub-categories: Being diagnosed as an HIV/Aids bearer - an unexpected fatality; The calm after the storm: Feelings upon the discovery of the positive diagnosis and the challenges of living with Aids, which evidence the influence of the condition of being a bearer of HIV/Aids in their conceptions of health and the changes in the bearer's daily life as an adaptation to the diagnosis of HIV; b) Participation and non-participation in antiretroviral therapy: two faces of the same existence, which shows the bearer living with HIV/Aids in his/her daily life, with emotional, financial, physical and even religious difficulties, factors that interfere in the process of participation in ARV therapy, and that gave origin to the following sub-categories: Facilitating and dissuading factors for participation; The patient creating strategies to facilitate participation; The importance of religiosity and a social network as conditions for participation. In views of the results and having worked for 10 years in the Specialized Service Clinic, I can say that even when rendering humanized care along with a multidisciplinary team, I never expected to find such evident results of non-participation, with important flaws between the care rendered in the form of instructions and the care that is learned and put in practice by patients. The results demonstrate that the human being should be instructed within his/her bio-psycho-socialspiritual context, in a continuous learning process between the caretaker and person being cared for. |
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Convivendo com a Aids e seu tratamento : experiência de portadores e familiaresAIDSDoençaEnfermagemCuidado familiarAdesãoBrasil.FamilyParticipationAIDSBrazil.Ciências da SaúdeEnfermagemThe objective of this study was to understand the aspects that influence patients with Aids and their relatives whether or not to take part in antiretroviral therapy. It is an exploratorydescriptive study, of a qualitative nature, undertaken with 10 bearers of HIV/Aids, monitored at the Specialized Care Service (SCS) for Aids in Campo Mourão, Paraná State, and their respective family caretakers. Data was collected in two stages, during the months of June 2006 and April 2007, using SCS document sources to describe the users, and two interview scripts - one for people living with Aids and another for their caretakers. The interviews, of the semi-structured type, were conducted individually with the patient, and later with the relative, in the home, according to the availability of both subjects and researchers. They lasted on average 40 minutes, and were recorded after consent was given. When selecting subjects, the fact that they attended the data collection stages along with their family caretaker was taken in consideration. The Thematic Analysis, according to (MINAYO, 2004) was used as reference for data analysis. The development of the study followed the ethical precepts underlined by Resolution n° 196/96, and the project was approved by the Committee of Ethics in Research with human beings of the State University of Maringá (decision 208/2006). Seven men and three women took part in the study, with ages between 26 and 60; seven were married, two were in stable unions and one was divorced. In regard to education, six of them had completed middle school and four had graduated from high school. As for the caretakers, nine were companions and one was a sister of the subject; they were between 25 and 60 years old, had little formal education and none of them were officially employed, although two of them worked as cleaning ladies, but without formal work registration. The analysis of the interviews allowed the identification of two broad categories: a) The impact of the discovery of positive status for the bearer and his/her family, showing that in spite of the current strategy by the National Program for STDs/Aids of valuing prevention, out of the 10 interviewees, seven found out their positive HIV status after the occurrence of opportunistic diseases, two women during prenatal care and only one at the Center for Testing and Counseling. This category is comprised of the following sub-categories: Being diagnosed as an HIV/Aids bearer - an unexpected fatality; The calm after the storm: Feelings upon the discovery of the positive diagnosis and the challenges of living with Aids, which evidence the influence of the condition of being a bearer of HIV/Aids in their conceptions of health and the changes in the bearer's daily life as an adaptation to the diagnosis of HIV; b) Participation and non-participation in antiretroviral therapy: two faces of the same existence, which shows the bearer living with HIV/Aids in his/her daily life, with emotional, financial, physical and even religious difficulties, factors that interfere in the process of participation in ARV therapy, and that gave origin to the following sub-categories: Facilitating and dissuading factors for participation; The patient creating strategies to facilitate participation; The importance of religiosity and a social network as conditions for participation. In views of the results and having worked for 10 years in the Specialized Service Clinic, I can say that even when rendering humanized care along with a multidisciplinary team, I never expected to find such evident results of non-participation, with important flaws between the care rendered in the form of instructions and the care that is learned and put in practice by patients. The results demonstrate that the human being should be instructed within his/her bio-psycho-socialspiritual context, in a continuous learning process between the caretaker and person being cared for.O objetivo do estudo foi compreender os aspectos que influenciam pacientes com Aids e seus familiares na adesão ou não-adesão à terapêutica anti-retroviral. Trata-se de um estudo descritivo-exploratório, de natureza qualitativa, desenvolvido junto a 10 indivíduos portadores do HIV/Aids acompanhados pelo Serviço de Atendimento Especializado em Aids (SAE) da cidade de Campo Mourão - PR e seus respectivos cuidadores familiares. Os dados foram coletados em duas etapas, nos meses de junho de 2006 e abril de 2007, utilizando fontes documentais do SAE para descrever os usuários, e dois roteiros de entrevista, um aplicado às pessoas portadoras de Aids e outro a seus cuidadores. As entrevistas, do tipo entrevista semi-estruturada, foram realizadas individualmente com o portador e, posteriormente, com o familiar, no domicílio, de acordo com a disponibilidade dos informantes e da pesquisadora. Elas tiveram a duração média de 40 minutos e, mediante prévio consentimento, foram gravadas. Na seleção dos informantes considerou-se como condição eles comparecerem ao serviço durante o período destinado à coleta de dados acompanhados dos respectivos cuidadores familiares. Para a análise dos dados utilizou-se como referencial a Análise Temática, conforme Minayo (2004). O desenvolvimento do estudo obedeceu aos preceitos éticos disciplinados pela Resolução n° 196/96, e o projeto foi aprovado pelo Comitê de Ética em Pesquisa com Seres Humanos da Universidade Estadual de Maringá (Parecer 208/2006). Fizeram parte do estudo dez indivíduos (sete homens e três mulheres), com idades entre 26 e 60 anos, sendo sete casados, dois em estado de união consensual e um desquitado. Em relação à escolaridade, seis haviam completado o Ensino Fundamental e quatro o Ensino Médio. Quanto aos(às) cuidadores(as), nove eram companheiros(as) e uma era irmã do portador; tinham idade entre 25 e 60 anos e baixa escolaridade, e nenhum estava no mercado formal de trabalho (duas mulheres trabalhavam como domésticas, porém sem registro em carteira). A análise dos depoimentos permitiu a identificação de duas grandes categorias. A primeira está apresentada sob o título "Impacto da descoberta da sorologia positiva para o portador e sua família", e nela se mostra que, apesar da atual estratégia do Programa Nacional de DST/Aids de valorização da prevenção, dos 10 entrevistados, sete se descobriram portadores após a ocorrência de doenças oportunistas, duas mulheres durante o pré-natal e somente um no Centro de Testagem e Aconselhamento. Esta categoria está constituída por três subcategorias, representadas pelos subtítulos: 1) Descobrindo-se portador de HIV/Aids - uma fatalidade não esperada; 2) Depois da tempestade vem a bonança: Sentimentos diante da descoberta da sorologia positiva; e 3) Os percalços da convivência com a Aids, em que se mostra a interferência da condição de ser portador de HIV/Aids em suas concepções sobre saúde e as mudanças ocorridas no cotidiano para a adaptação ao diagnóstico do HIV pelo portador. A segunda categoria está sob o título "Adesão e não-adesão à terapêutica anti-retroviral: as duas faces de uma mesma vivência", em que se mostra o portador de HIV/Aids convivendo, no cotidiano, com dificuldades emocionais, financeiras, físicas e até religiosas. Esses fatores interferem no processo de adesão à terapêutica ARV e deram origem às subcategorias denominadas: 1) "Fatores facilitadores e dificultadores da adesão"; 2) "O paciente criando estratégias para facilitar a adesão"; 3) "A importância da religiosidade e da rede social como condição para a adesão". Diante dos resultados encontrados e de 10 anos de trabalho no Serviço de Ambulatório Especializado, posso dizer que, mesmo prestando um cuidado humanizado junto com a equipe multidisciplinar, nunca esperava encontrar resultados tão evidentes de não-adesão, com falhas importantes entre o cuidado prestado na forma de orientações e o cuidado apreendido e colocado em prática pelos entrevistados. Os resultados demonstram que o ser humano deve ser trabalhado dentro do seu contexto biopsicosocioespiritual, em um processo continuo de aprendizado entre o cuidador e o ser cuidado.107 fUniversidade Estadual de MaringáBrasilPrograma de Pós-Graduação em EnfermagemUEMMaringáDepartamento de EnfermagemSônia Silva MarconEdir Nei Teixeira Mandu - UMTMagda Lucia Fêlix de Oliveira - UEMSilva, Ana Lúcia Cardoso Nogueira da2018-04-10T19:15:35Z2018-04-10T19:15:35Z2007info:eu-repo/semantics/publishedVersioninfo:eu-repo/semantics/masterThesishttp://repositorio.uem.br:8080/jspui/handle/1/2357porinfo:eu-repo/semantics/openAccessreponame:Repositório Institucional da Universidade Estadual de Maringá (RI-UEM)instname:Universidade Estadual de Maringá (UEM)instacron:UEM2018-04-10T19:15:35Zoai:localhost:1/2357Repositório InstitucionalPUBhttp://repositorio.uem.br:8080/oai/requestopendoar:2024-04-23T14:55:23.682201Repositório Institucional da Universidade Estadual de Maringá (RI-UEM) - Universidade Estadual de Maringá (UEM)false |
dc.title.none.fl_str_mv |
Convivendo com a Aids e seu tratamento : experiência de portadores e familiares |
title |
Convivendo com a Aids e seu tratamento : experiência de portadores e familiares |
spellingShingle |
Convivendo com a Aids e seu tratamento : experiência de portadores e familiares Silva, Ana Lúcia Cardoso Nogueira da AIDS Doença Enfermagem Cuidado familiar Adesão Brasil. Family Participation AIDS Brazil. Ciências da Saúde Enfermagem |
title_short |
Convivendo com a Aids e seu tratamento : experiência de portadores e familiares |
title_full |
Convivendo com a Aids e seu tratamento : experiência de portadores e familiares |
title_fullStr |
Convivendo com a Aids e seu tratamento : experiência de portadores e familiares |
title_full_unstemmed |
Convivendo com a Aids e seu tratamento : experiência de portadores e familiares |
title_sort |
Convivendo com a Aids e seu tratamento : experiência de portadores e familiares |
author |
Silva, Ana Lúcia Cardoso Nogueira da |
author_facet |
Silva, Ana Lúcia Cardoso Nogueira da |
author_role |
author |
dc.contributor.none.fl_str_mv |
Sônia Silva Marcon Edir Nei Teixeira Mandu - UMT Magda Lucia Fêlix de Oliveira - UEM |
dc.contributor.author.fl_str_mv |
Silva, Ana Lúcia Cardoso Nogueira da |
dc.subject.por.fl_str_mv |
AIDS Doença Enfermagem Cuidado familiar Adesão Brasil. Family Participation AIDS Brazil. Ciências da Saúde Enfermagem |
topic |
AIDS Doença Enfermagem Cuidado familiar Adesão Brasil. Family Participation AIDS Brazil. Ciências da Saúde Enfermagem |
description |
The objective of this study was to understand the aspects that influence patients with Aids and their relatives whether or not to take part in antiretroviral therapy. It is an exploratorydescriptive study, of a qualitative nature, undertaken with 10 bearers of HIV/Aids, monitored at the Specialized Care Service (SCS) for Aids in Campo Mourão, Paraná State, and their respective family caretakers. Data was collected in two stages, during the months of June 2006 and April 2007, using SCS document sources to describe the users, and two interview scripts - one for people living with Aids and another for their caretakers. The interviews, of the semi-structured type, were conducted individually with the patient, and later with the relative, in the home, according to the availability of both subjects and researchers. They lasted on average 40 minutes, and were recorded after consent was given. When selecting subjects, the fact that they attended the data collection stages along with their family caretaker was taken in consideration. The Thematic Analysis, according to (MINAYO, 2004) was used as reference for data analysis. The development of the study followed the ethical precepts underlined by Resolution n° 196/96, and the project was approved by the Committee of Ethics in Research with human beings of the State University of Maringá (decision 208/2006). Seven men and three women took part in the study, with ages between 26 and 60; seven were married, two were in stable unions and one was divorced. In regard to education, six of them had completed middle school and four had graduated from high school. As for the caretakers, nine were companions and one was a sister of the subject; they were between 25 and 60 years old, had little formal education and none of them were officially employed, although two of them worked as cleaning ladies, but without formal work registration. The analysis of the interviews allowed the identification of two broad categories: a) The impact of the discovery of positive status for the bearer and his/her family, showing that in spite of the current strategy by the National Program for STDs/Aids of valuing prevention, out of the 10 interviewees, seven found out their positive HIV status after the occurrence of opportunistic diseases, two women during prenatal care and only one at the Center for Testing and Counseling. This category is comprised of the following sub-categories: Being diagnosed as an HIV/Aids bearer - an unexpected fatality; The calm after the storm: Feelings upon the discovery of the positive diagnosis and the challenges of living with Aids, which evidence the influence of the condition of being a bearer of HIV/Aids in their conceptions of health and the changes in the bearer's daily life as an adaptation to the diagnosis of HIV; b) Participation and non-participation in antiretroviral therapy: two faces of the same existence, which shows the bearer living with HIV/Aids in his/her daily life, with emotional, financial, physical and even religious difficulties, factors that interfere in the process of participation in ARV therapy, and that gave origin to the following sub-categories: Facilitating and dissuading factors for participation; The patient creating strategies to facilitate participation; The importance of religiosity and a social network as conditions for participation. In views of the results and having worked for 10 years in the Specialized Service Clinic, I can say that even when rendering humanized care along with a multidisciplinary team, I never expected to find such evident results of non-participation, with important flaws between the care rendered in the form of instructions and the care that is learned and put in practice by patients. The results demonstrate that the human being should be instructed within his/her bio-psycho-socialspiritual context, in a continuous learning process between the caretaker and person being cared for. |
publishDate |
2007 |
dc.date.none.fl_str_mv |
2007 2018-04-10T19:15:35Z 2018-04-10T19:15:35Z |
dc.type.status.fl_str_mv |
info:eu-repo/semantics/publishedVersion |
dc.type.driver.fl_str_mv |
info:eu-repo/semantics/masterThesis |
format |
masterThesis |
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http://repositorio.uem.br:8080/jspui/handle/1/2357 |
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por |
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openAccess |
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Universidade Estadual de Maringá Brasil Programa de Pós-Graduação em Enfermagem UEM Maringá Departamento de Enfermagem |
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Universidade Estadual de Maringá Brasil Programa de Pós-Graduação em Enfermagem UEM Maringá Departamento de Enfermagem |
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Repositório Institucional da Universidade Estadual de Maringá (RI-UEM) - Universidade Estadual de Maringá (UEM) |
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