Living with Leprosy: The perception of patients about the stigma of the disease

Detalhes bibliográficos
Autor(a) principal: Camalionte, Letícia George
Data de Publicação: 2022
Outros Autores: Gascón, Maria Rita Polo, Trindade, Maria Ângela Bianconcini
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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spelling 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
dc.rights.driver.fl_str_mv https://creativecommons.org/licenses/by/4.0
info:eu-repo/semantics/openAccess
rights_invalid_str_mv https://creativecommons.org/licenses/by/4.0
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv 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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