HTLV: a stigmatizing infection?

Detalhes bibliográficos
Autor(a) principal: Ionara Ferreira da Silva Garcia
Data de Publicação: 2019
Outros Autores: Élida Azevedo Hennington
Tipo de documento: Artigo
Idioma: eng
por
Título da fonte: Cadernos de Saúde Pública
Texto Completo: https://cadernos.ensp.fiocruz.br/ojs/index.php/csp/article/view/6953
Resumo: HTLV is a virus that affects human T-cells. Brazil is the country of the world with the largest absolute number of HTLV cases. Estimates by the Ministry of Health point to 700,000 to 2 million infected Brazilians. The majority are asymptomatic carriers, but some persons may develop degenerative neurological conditions such as tropical spastic paraparesis, in addition to leukemia and lymphoma. The forms of transmission and clinical manifestations such as progressive motor incapacity, genitourinary disorders, in addition to restriction of maternal breastfeeding, impact daily life and can lead to social discrimination and stigma. The stigma denotes violation of social norms and reinforces prejudice and inequalities. This article aims to discuss the concept of stigma and its repercussions on persons living with HTLV. The discussion is based on a literature review on the theme and the authors’ experience with care for persons affected by the infection and illness. The study found that both HTLV carrier status and HTLV-related illness can be stigmatizing for individuals, who feel inferior for being infected with a potentially serious and even fatal disease, although incompletely understood and loaded with derogatory stereotypes. This situation can have negative repercussions on access to health services, treatment adherence, and pursuit of rights. Public policies should help mitigate such stigmatization, ensuring the rights of individuals in a situation of vulnerability due to HTLV in order from them to live as protagonists in the exercise of their civil rights.
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spelling HTLV: a stigmatizing infection?HTLV: uma infecção estigmatizante?HTLVSocial StigmaPrejudiceCommunity ParticipationHTLVEstigma SocialPreconceitoCidadaniaHTLV is a virus that affects human T-cells. Brazil is the country of the world with the largest absolute number of HTLV cases. Estimates by the Ministry of Health point to 700,000 to 2 million infected Brazilians. The majority are asymptomatic carriers, but some persons may develop degenerative neurological conditions such as tropical spastic paraparesis, in addition to leukemia and lymphoma. The forms of transmission and clinical manifestations such as progressive motor incapacity, genitourinary disorders, in addition to restriction of maternal breastfeeding, impact daily life and can lead to social discrimination and stigma. The stigma denotes violation of social norms and reinforces prejudice and inequalities. This article aims to discuss the concept of stigma and its repercussions on persons living with HTLV. The discussion is based on a literature review on the theme and the authors’ experience with care for persons affected by the infection and illness. The study found that both HTLV carrier status and HTLV-related illness can be stigmatizing for individuals, who feel inferior for being infected with a potentially serious and even fatal disease, although incompletely understood and loaded with derogatory stereotypes. This situation can have negative repercussions on access to health services, treatment adherence, and pursuit of rights. Public policies should help mitigate such stigmatization, ensuring the rights of individuals in a situation of vulnerability due to HTLV in order from them to live as protagonists in the exercise of their civil rights.El HTLV es un virus que afecta a las células T humanas. Brasil es el país con el mayor número absoluto de casos de HTLV en el mundo. Las estimaciones del Ministerio de Salud indican que existen entre 700 mil y 2 millones de personas infectadas. La mayoría son portadores asintomáticos, sin embargo, algunas personas pueden llegar a desarrollar cuadros neurológicos degenerativos como la paraparesia espástica tropical, además de leucemia y linfoma. Las formas de transmisión y manifestaciones clínicas como incapacidad motora progresiva, disturbios genitourinarios, además de la restricción en la lactancia materna, tienen un impacto en las personas afectadas y pueden causar discriminación social y estigma. El estigma denota una violación de las normas sociales y refuerza el prejuicio y las desigualdades. El objetivo de este artículo es discutir el concepto de estigma y su repercusión en personas que conviven con el HTLV. Se trata de una reflexión basada en la revisión de la literatura sobre el tema y en la vivencia de la atención a personas afectadas por la infección y enfermedad. Se constató que ser portador del virus o enfermar, a consecuencia de la infección por el HTLV, puede ser estigmatizante para individuos que se sienten subestimados al ser atacados por una enfermedad potencialmente grave e incluso fatal, todavía poco conocida y cargada de estereotipos despreciativos. Esta situación puede repercutir negativamente en el acceso a los servicios de salud, en la adhesión al tratamiento y en la búsqueda de derechos. Las políticas públicas deben contribuir a mitigar la estigmatización, asegurando el derecho de los individuos en situación de vulnerabilidad por el HTLV para que vivan como protagonistas en el ejercicio de su ciudadanía.O HTLV é um vírus que afeta as células T humanas. O Brasil é o país com o maior número absoluto de casos de HTLV no mundo. Estimativas do Ministério da Saúde apontam entre 700 mil e 2 milhões de pessoas infectadas. A maioria são portadores assintomáticos, porém algumas pessoas podem vir a desenvolver quadros neurológicos degenerativos como a paraparesia espástica tropical, além de leucemia e linfoma. As formas de transmissão e manifestações clínicas como incapacidade motora progressiva, distúrbios geniturinários, além da restrição ao aleitamento materno impactam o cotidiano e podem ser geradores de discriminação social e estigma. O estigma denota violação das normas sociais e reforça o preconceito e as desigualdades. O objetivo deste artigo é discutir o conceito de estigma e sua repercussão em pessoas que convivem com o HTLV. Trata-se de uma reflexão baseada na revisão da literatura sobre o tema e na vivência do atendimento a pessoas afetadas pela infecção e adoecimento. Constatou-se que ser portador do vírus ou adoecer em decorrência da infecção pelo HTLV pode ser estigmatizante para indivíduos que se sentem inferiorizados ao serem acometidos por uma doença potencialmente grave e até mesmo fatal, ainda pouco conhecida e carregada de estereótipos depreciativos. Essa situação pode repercutir negativamente no acesso aos serviços de saúde, na adesão ao tratamento e na busca por direitos. As políticas públicas devem contribuir para mitigar a estigmatização, assegurando o direito de indivíduos em situação de vulnerabilidade pelo HTLV viverem como protagonistas no exercício de sua cidadania.Reports in Public HealthCadernos de Saúde Pública2019-11-11info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersiontext/htmltext/htmlapplication/pdfapplication/pdfhttps://cadernos.ensp.fiocruz.br/ojs/index.php/csp/article/view/6953Reports in Public Health; Vol. 35 No. 11 (2019): NovemberCadernos de Saúde Pública; v. 35 n. 11 (2019): Novembro1678-44640102-311Xreponame:Cadernos de Saúde Públicainstname:Fundação Oswaldo Cruz (FIOCRUZ)instacron:FIOCRUZengporhttps://cadernos.ensp.fiocruz.br/ojs/index.php/csp/article/view/6953/15106https://cadernos.ensp.fiocruz.br/ojs/index.php/csp/article/view/6953/15107https://cadernos.ensp.fiocruz.br/ojs/index.php/csp/article/view/6953/15108https://cadernos.ensp.fiocruz.br/ojs/index.php/csp/article/view/6953/15109Ionara Ferreira da Silva GarciaÉlida Azevedo Henningtoninfo:eu-repo/semantics/openAccess2024-03-06T15:29:38Zoai:ojs.teste-cadernos.ensp.fiocruz.br:article/6953Revistahttps://cadernos.ensp.fiocruz.br/ojs/index.php/csphttps://cadernos.ensp.fiocruz.br/ojs/index.php/csp/oaicadernos@ensp.fiocruz.br||cadernos@ensp.fiocruz.br1678-44640102-311Xopendoar:2024-03-06T13:07:58.180175Cadernos de Saúde Pública - Fundação Oswaldo Cruz (FIOCRUZ)true
dc.title.none.fl_str_mv HTLV: a stigmatizing infection?
HTLV: uma infecção estigmatizante?
title HTLV: a stigmatizing infection?
spellingShingle HTLV: a stigmatizing infection?
Ionara Ferreira da Silva Garcia
HTLV
Social Stigma
Prejudice
Community Participation
HTLV
Estigma Social
Preconceito
Cidadania
title_short HTLV: a stigmatizing infection?
title_full HTLV: a stigmatizing infection?
title_fullStr HTLV: a stigmatizing infection?
title_full_unstemmed HTLV: a stigmatizing infection?
title_sort HTLV: a stigmatizing infection?
author Ionara Ferreira da Silva Garcia
author_facet Ionara Ferreira da Silva Garcia
Élida Azevedo Hennington
author_role author
author2 Élida Azevedo Hennington
author2_role author
dc.contributor.author.fl_str_mv Ionara Ferreira da Silva Garcia
Élida Azevedo Hennington
dc.subject.por.fl_str_mv HTLV
Social Stigma
Prejudice
Community Participation
HTLV
Estigma Social
Preconceito
Cidadania
topic HTLV
Social Stigma
Prejudice
Community Participation
HTLV
Estigma Social
Preconceito
Cidadania
description HTLV is a virus that affects human T-cells. Brazil is the country of the world with the largest absolute number of HTLV cases. Estimates by the Ministry of Health point to 700,000 to 2 million infected Brazilians. The majority are asymptomatic carriers, but some persons may develop degenerative neurological conditions such as tropical spastic paraparesis, in addition to leukemia and lymphoma. The forms of transmission and clinical manifestations such as progressive motor incapacity, genitourinary disorders, in addition to restriction of maternal breastfeeding, impact daily life and can lead to social discrimination and stigma. The stigma denotes violation of social norms and reinforces prejudice and inequalities. This article aims to discuss the concept of stigma and its repercussions on persons living with HTLV. The discussion is based on a literature review on the theme and the authors’ experience with care for persons affected by the infection and illness. The study found that both HTLV carrier status and HTLV-related illness can be stigmatizing for individuals, who feel inferior for being infected with a potentially serious and even fatal disease, although incompletely understood and loaded with derogatory stereotypes. This situation can have negative repercussions on access to health services, treatment adherence, and pursuit of rights. Public policies should help mitigate such stigmatization, ensuring the rights of individuals in a situation of vulnerability due to HTLV in order from them to live as protagonists in the exercise of their civil rights.
publishDate 2019
dc.date.none.fl_str_mv 2019-11-11
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dc.language.iso.fl_str_mv eng
por
language eng
por
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https://cadernos.ensp.fiocruz.br/ojs/index.php/csp/article/view/6953/15107
https://cadernos.ensp.fiocruz.br/ojs/index.php/csp/article/view/6953/15108
https://cadernos.ensp.fiocruz.br/ojs/index.php/csp/article/view/6953/15109
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dc.publisher.none.fl_str_mv Reports in Public Health
Cadernos de Saúde Pública
publisher.none.fl_str_mv Reports in Public Health
Cadernos de Saúde Pública
dc.source.none.fl_str_mv Reports in Public Health; Vol. 35 No. 11 (2019): November
Cadernos de Saúde Pública; v. 35 n. 11 (2019): Novembro
1678-4464
0102-311X
reponame:Cadernos de Saúde Pública
instname:Fundação Oswaldo Cruz (FIOCRUZ)
instacron:FIOCRUZ
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institution FIOCRUZ
reponame_str Cadernos de Saúde Pública
collection Cadernos de Saúde Pública
repository.name.fl_str_mv Cadernos de Saúde Pública - Fundação Oswaldo Cruz (FIOCRUZ)
repository.mail.fl_str_mv cadernos@ensp.fiocruz.br||cadernos@ensp.fiocruz.br
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