Living with Leprosy: The perception of patients about the stigma of the disease
Autor(a) principal: | |
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Data de Publicação: | 2022 |
Outros Autores: | , |
Tipo de documento: | Artigo |
Idioma: | por |
Título da fonte: | Research, Society and Development |
Texto Completo: | https://rsdjournal.org/index.php/rsd/article/view/31558 |
Resumo: | Leprosy is a chronic infectious disease that causes skin lesions and damage to peripheral nerves, which can lead to physical disabilities. Patients carry stigmas and prejudices due to the history and beliefs attributed to the disease, which can cause suffering, affecting self-esteem and impairing their socialization. This study analyzed the presence or absence of stigma related to leprosy from the reports of patients who were in outpatient follow-up and participated in a group for the disease. It also looked at whether participation in the group helped in any way with treatment. Participants: 53 men and women, with a mean age of 55.5 years. Design: exploratory qualitative and quantitative descriptive analysis. Instruments: telephone interviews conducted by two guiding questions: “how does the disease affect your life and how did the host group help you”. Results: 62.3% of the participants reported experiencing prejudice and/or withdrawal from friendships since they received the diagnosis of leprosy. There were reports of decreased self-esteem after sequelae of the disease and withdrawal from acquaintances and family members who were afraid of contagion. The majority (96.2%) of the participants reported that the group helped during the treatment of leprosy. Reception groups in the format of a waiting room in health units can help to improve information and knowledge about leprosy, reducing prejudice and improving the way of dealing with treatment. The lack of information about the disease proves to be a factor that contributed to the maintenance of the stigma that leprosy carries. |
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Living with Leprosy: The perception of patients about the stigma of the disease Vivir con Lepra: La percepción de los pacientes sobre el estigma de la enfermedadConvivendo com a Hanseníase: A percepção de pacientes sobre o estigma da doençaLeprosyDermatologyPsychologySocial stigma.LepraDermatologíaPsicologíaEstigma social. HanseníaseDermatologiaPsicologiaEstigma social.Leprosy is a chronic infectious disease that causes skin lesions and damage to peripheral nerves, which can lead to physical disabilities. Patients carry stigmas and prejudices due to the history and beliefs attributed to the disease, which can cause suffering, affecting self-esteem and impairing their socialization. This study analyzed the presence or absence of stigma related to leprosy from the reports of patients who were in outpatient follow-up and participated in a group for the disease. It also looked at whether participation in the group helped in any way with treatment. Participants: 53 men and women, with a mean age of 55.5 years. Design: exploratory qualitative and quantitative descriptive analysis. Instruments: telephone interviews conducted by two guiding questions: “how does the disease affect your life and how did the host group help you”. Results: 62.3% of the participants reported experiencing prejudice and/or withdrawal from friendships since they received the diagnosis of leprosy. There were reports of decreased self-esteem after sequelae of the disease and withdrawal from acquaintances and family members who were afraid of contagion. The majority (96.2%) of the participants reported that the group helped during the treatment of leprosy. Reception groups in the format of a waiting room in health units can help to improve information and knowledge about leprosy, reducing prejudice and improving the way of dealing with treatment. The lack of information about the disease proves to be a factor that contributed to the maintenance of the stigma that leprosy carries.La lepra es una enfermedad infecciosa crónica que provoca lesiones en la piel y daños en los nervios periféricos, lo que puede provocar discapacidades físicas. Los pacientes cargan con estigmas y prejuicios debido a la historia y creencias atribuidas a la enfermedad, lo que puede causarles sufrimiento, afectando su autoestima y perjudicando su socialización. Este estudio analizó la presencia o ausencia de estigma relacionado con la lepra a partir de los relatos de pacientes que estaban en seguimiento ambulatorio y participaban de un grupo de acogida de la enfermedad. También analizó si la participación en el grupo ayudó de alguna manera con el tratamiento. Participantes: 53 hombres y mujeres, con una edad media de 55,5 años. Diseño: análisis descriptivo cualitativo y cuantitativo exploratorio. Instrumentos: entrevistas telefónicas realizadas mediante dos preguntas orientadoras: “cómo afecta la enfermedad a tu vida y cómo te ayudó el grupo de acogida”. Resultados: El 62,3% de los participantes relató experimentar prejuicios y/o alejamiento de las amistades desde que recibieron el diagnóstico de lepra. Hubo relatos de disminución de la autoestima tras secuelas de la enfermedad y retraimiento de conocidos y familiares que temían el contagio. La mayoría (96,2%) de los participantes informó que el grupo ayudó durante el tratamiento de la lepra. Los grupos de acogida en formato de sala de espera en las unidades de salud pueden ayudar a mejorar la información y el conocimiento sobre la lepra, reduciendo los prejuicios y mejorando la forma de afrontar el tratamiento. La falta de información sobre la enfermedad resulta ser un factor que contribuyó al mantenimiento del estigma que acarrea la lepra.A hanseníase é uma doença infecciosa crônica que causa lesões de pele e danos aos nervos periféricos podendo gerar incapacidades físicas. Os pacientes carregam estigmas e preconceitos devido a história e crenças atribuídas à doença, podendo causar sofrimento, afetando a autoestima e prejudicando sua socialização. Este teve como objetivo analisar a presença ou não do estigma relacionado à hanseníase a partir do relato de pacientes que estavam em seguimento ambulatorial e participaram de grupo de acolhimento para a doença. Também observou se a participação no grupo ajudou de alguma forma no tratamento. Participantes: 53 homens e mulheres, com média de idade de 55,5 anos. Delineamento: análise qualitativa exploratória e descritiva quantitativa. Instrumentos: entrevistas telefônicas conduzidas por duas perguntas norteadoras: “como a doença afeta sua vida e como o grupo de acolhimento o ajudava”. Resultados: 62,3% dos participantes relataram perceber sofrer preconceito e/ou afastamento de amizades desde que receberam o diagnóstico de hanseníase. Verificou-se relatos de diminuição da autoestima após sequelas da doença e de afastamento de conhecidos e familiares que tinham medo do contágio. A maioria (96,2%) dos participantes relataram que o grupo ajudou durante o tratamento da hanseníase. Grupos de acolhimento no formato de sala de espera em unidades de saúde podem auxiliar a melhorar a informação e o conhecimento sobre a hanseníase, diminuindo o preconceito e melhorando a maneira de enfrentar o tratamento. A falta de informação sobre a doença demonstra ser um fator que contribuiu para a manutenção do estigma que a hanseníase carrega.Research, Society and Development2022-06-30info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfhttps://rsdjournal.org/index.php/rsd/article/view/3155810.33448/rsd-v11i8.31558Research, Society and Development; Vol. 11 No. 8; e59211831558Research, Society and Development; Vol. 11 Núm. 8; e59211831558Research, Society and Development; v. 11 n. 8; e592118315582525-3409reponame:Research, Society and Developmentinstname:Universidade Federal de Itajubá (UNIFEI)instacron:UNIFEIporhttps://rsdjournal.org/index.php/rsd/article/view/31558/26830Copyright (c) 2022 Letícia George Camalionte; Maria Rita Polo Gascón; Maria Ângela Bianconcini Trindadehttps://creativecommons.org/licenses/by/4.0info:eu-repo/semantics/openAccessCamalionte, Letícia GeorgeGascón, Maria Rita PoloTrindade, Maria Ângela Bianconcini2022-07-01T13:34:06Zoai:ojs.pkp.sfu.ca:article/31558Revistahttps://rsdjournal.org/index.php/rsd/indexPUBhttps://rsdjournal.org/index.php/rsd/oairsd.articles@gmail.com2525-34092525-3409opendoar:2024-01-17T09:47:51.436225Research, Society and Development - Universidade Federal de Itajubá (UNIFEI)false |
dc.title.none.fl_str_mv |
Living with Leprosy: The perception of patients about the stigma of the disease Vivir con Lepra: La percepción de los pacientes sobre el estigma de la enfermedad Convivendo com a Hanseníase: A percepção de pacientes sobre o estigma da doença |
title |
Living with Leprosy: The perception of patients about the stigma of the disease |
spellingShingle |
Living with Leprosy: The perception of patients about the stigma of the disease Camalionte, Letícia George Leprosy Dermatology Psychology Social stigma. Lepra Dermatología Psicología Estigma social. Hanseníase Dermatologia Psicologia Estigma social. |
title_short |
Living with Leprosy: The perception of patients about the stigma of the disease |
title_full |
Living with Leprosy: The perception of patients about the stigma of the disease |
title_fullStr |
Living with Leprosy: The perception of patients about the stigma of the disease |
title_full_unstemmed |
Living with Leprosy: The perception of patients about the stigma of the disease |
title_sort |
Living with Leprosy: The perception of patients about the stigma of the disease |
author |
Camalionte, Letícia George |
author_facet |
Camalionte, Letícia George Gascón, Maria Rita Polo Trindade, Maria Ângela Bianconcini |
author_role |
author |
author2 |
Gascón, Maria Rita Polo Trindade, Maria Ângela Bianconcini |
author2_role |
author author |
dc.contributor.author.fl_str_mv |
Camalionte, Letícia George Gascón, Maria Rita Polo Trindade, Maria Ângela Bianconcini |
dc.subject.por.fl_str_mv |
Leprosy Dermatology Psychology Social stigma. Lepra Dermatología Psicología Estigma social. Hanseníase Dermatologia Psicologia Estigma social. |
topic |
Leprosy Dermatology Psychology Social stigma. Lepra Dermatología Psicología Estigma social. Hanseníase Dermatologia Psicologia Estigma social. |
description |
Leprosy is a chronic infectious disease that causes skin lesions and damage to peripheral nerves, which can lead to physical disabilities. Patients carry stigmas and prejudices due to the history and beliefs attributed to the disease, which can cause suffering, affecting self-esteem and impairing their socialization. This study analyzed the presence or absence of stigma related to leprosy from the reports of patients who were in outpatient follow-up and participated in a group for the disease. It also looked at whether participation in the group helped in any way with treatment. Participants: 53 men and women, with a mean age of 55.5 years. Design: exploratory qualitative and quantitative descriptive analysis. Instruments: telephone interviews conducted by two guiding questions: “how does the disease affect your life and how did the host group help you”. Results: 62.3% of the participants reported experiencing prejudice and/or withdrawal from friendships since they received the diagnosis of leprosy. There were reports of decreased self-esteem after sequelae of the disease and withdrawal from acquaintances and family members who were afraid of contagion. The majority (96.2%) of the participants reported that the group helped during the treatment of leprosy. Reception groups in the format of a waiting room in health units can help to improve information and knowledge about leprosy, reducing prejudice and improving the way of dealing with treatment. The lack of information about the disease proves to be a factor that contributed to the maintenance of the stigma that leprosy carries. |
publishDate |
2022 |
dc.date.none.fl_str_mv |
2022-06-30 |
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/31558 10.33448/rsd-v11i8.31558 |
url |
https://rsdjournal.org/index.php/rsd/article/view/31558 |
identifier_str_mv |
10.33448/rsd-v11i8.31558 |
dc.language.iso.fl_str_mv |
por |
language |
por |
dc.relation.none.fl_str_mv |
https://rsdjournal.org/index.php/rsd/article/view/31558/26830 |
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https://creativecommons.org/licenses/by/4.0 info:eu-repo/semantics/openAccess |
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https://creativecommons.org/licenses/by/4.0 |
eu_rights_str_mv |
openAccess |
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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. 8; e59211831558 Research, Society and Development; Vol. 11 Núm. 8; e59211831558 Research, Society and Development; v. 11 n. 8; e59211831558 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 |
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1797052796243017728 |