Stigma, deforming metaphors and patients' moral experience of multibacillary leprosy in Sobral, Ceará State, Brazil

Detalhes bibliográficos
Autor(a) principal: Nations,Marilyn K.
Data de Publicação: 2009
Outros Autores: Lira,Geison Vasconcelos, Catrib,Ana Maria Fontenelle
Tipo de documento: Artigo
Idioma: eng
Título da fonte: Cadernos de Saúde Pública
Texto Completo: http://old.scielo.br/scielo.php?script=sci_arttext&pid=S0102-311X2009000600004
Resumo: In response to the call for a new Science of Stigma, this anthropological study investigates the moral experience of patients diagnosed with severe multibacillary leprosy. From 2003 to 2006, fieldwork was conducted in the so-called "United-States-of-Sobral", in Ceará State, Northeast Brazil. Sobral is highly endemic for leprosy, despite intensified eradication efforts and a 30% increase in primary care coverage since 1999. Of 329 active leprosy cases at two public clinics, 279 multibacillary patients were identified and six information-rich cases selected for in-depth ethnographic analysis, utilizing illness narratives, key-informant interviews, home visits, participant-observation of clinical consultations and semi-structured interviews with physicians. A "contextualized semantic interpretation" revealed four leprosy metaphors: a repulsive rat's disease, a racist skin rash, a biblical curse and lethal leukemia. Far from value-free pathology, the disease is imbued with moral significance. Patients' multivocalic illness constructions contest physicians' disease discourse. "Skin Spot Day" discriminates more than educates. Patients' "non-compliance" with effective multi-drug therapy is due to demoralizing stigma more than a rejection of care. "Social leprosy" in Northeast Brazil deforms patients' moral reputations and personal dignity.
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spelling Stigma, deforming metaphors and patients' moral experience of multibacillary leprosy in Sobral, Ceará State, BrazilLeprosyStereotypingMetaphorIn response to the call for a new Science of Stigma, this anthropological study investigates the moral experience of patients diagnosed with severe multibacillary leprosy. From 2003 to 2006, fieldwork was conducted in the so-called "United-States-of-Sobral", in Ceará State, Northeast Brazil. Sobral is highly endemic for leprosy, despite intensified eradication efforts and a 30% increase in primary care coverage since 1999. Of 329 active leprosy cases at two public clinics, 279 multibacillary patients were identified and six information-rich cases selected for in-depth ethnographic analysis, utilizing illness narratives, key-informant interviews, home visits, participant-observation of clinical consultations and semi-structured interviews with physicians. A "contextualized semantic interpretation" revealed four leprosy metaphors: a repulsive rat's disease, a racist skin rash, a biblical curse and lethal leukemia. Far from value-free pathology, the disease is imbued with moral significance. Patients' multivocalic illness constructions contest physicians' disease discourse. "Skin Spot Day" discriminates more than educates. Patients' "non-compliance" with effective multi-drug therapy is due to demoralizing stigma more than a rejection of care. "Social leprosy" in Northeast Brazil deforms patients' moral reputations and personal dignity.Escola Nacional de Saúde Pública Sergio Arouca, Fundação Oswaldo Cruz2009-06-01info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersiontext/htmlhttp://old.scielo.br/scielo.php?script=sci_arttext&pid=S0102-311X2009000600004Cadernos de Saúde Pública v.25 n.6 2009reponame:Cadernos de Saúde Públicainstname:Fundação Oswaldo Cruz (FIOCRUZ)instacron:FIOCRUZ10.1590/S0102-311X2009000600004info:eu-repo/semantics/openAccessNations,Marilyn K.Lira,Geison VasconcelosCatrib,Ana Maria Fontenelleeng2009-06-02T00:00:00Zoai:scielo:S0102-311X2009000600004Revistahttp://cadernos.ensp.fiocruz.br/csp/https://old.scielo.br/oai/scielo-oai.phpcadernos@ensp.fiocruz.br||cadernos@ensp.fiocruz.br1678-44640102-311Xopendoar:2009-06-02T00:00Cadernos de Saúde Pública - Fundação Oswaldo Cruz (FIOCRUZ)false
dc.title.none.fl_str_mv Stigma, deforming metaphors and patients' moral experience of multibacillary leprosy in Sobral, Ceará State, Brazil
title Stigma, deforming metaphors and patients' moral experience of multibacillary leprosy in Sobral, Ceará State, Brazil
spellingShingle Stigma, deforming metaphors and patients' moral experience of multibacillary leprosy in Sobral, Ceará State, Brazil
Nations,Marilyn K.
Leprosy
Stereotyping
Metaphor
title_short Stigma, deforming metaphors and patients' moral experience of multibacillary leprosy in Sobral, Ceará State, Brazil
title_full Stigma, deforming metaphors and patients' moral experience of multibacillary leprosy in Sobral, Ceará State, Brazil
title_fullStr Stigma, deforming metaphors and patients' moral experience of multibacillary leprosy in Sobral, Ceará State, Brazil
title_full_unstemmed Stigma, deforming metaphors and patients' moral experience of multibacillary leprosy in Sobral, Ceará State, Brazil
title_sort Stigma, deforming metaphors and patients' moral experience of multibacillary leprosy in Sobral, Ceará State, Brazil
author Nations,Marilyn K.
author_facet Nations,Marilyn K.
Lira,Geison Vasconcelos
Catrib,Ana Maria Fontenelle
author_role author
author2 Lira,Geison Vasconcelos
Catrib,Ana Maria Fontenelle
author2_role author
author
dc.contributor.author.fl_str_mv Nations,Marilyn K.
Lira,Geison Vasconcelos
Catrib,Ana Maria Fontenelle
dc.subject.por.fl_str_mv Leprosy
Stereotyping
Metaphor
topic Leprosy
Stereotyping
Metaphor
description In response to the call for a new Science of Stigma, this anthropological study investigates the moral experience of patients diagnosed with severe multibacillary leprosy. From 2003 to 2006, fieldwork was conducted in the so-called "United-States-of-Sobral", in Ceará State, Northeast Brazil. Sobral is highly endemic for leprosy, despite intensified eradication efforts and a 30% increase in primary care coverage since 1999. Of 329 active leprosy cases at two public clinics, 279 multibacillary patients were identified and six information-rich cases selected for in-depth ethnographic analysis, utilizing illness narratives, key-informant interviews, home visits, participant-observation of clinical consultations and semi-structured interviews with physicians. A "contextualized semantic interpretation" revealed four leprosy metaphors: a repulsive rat's disease, a racist skin rash, a biblical curse and lethal leukemia. Far from value-free pathology, the disease is imbued with moral significance. Patients' multivocalic illness constructions contest physicians' disease discourse. "Skin Spot Day" discriminates more than educates. Patients' "non-compliance" with effective multi-drug therapy is due to demoralizing stigma more than a rejection of care. "Social leprosy" in Northeast Brazil deforms patients' moral reputations and personal dignity.
publishDate 2009
dc.date.none.fl_str_mv 2009-06-01
dc.type.driver.fl_str_mv info:eu-repo/semantics/article
dc.type.status.fl_str_mv info:eu-repo/semantics/publishedVersion
format article
status_str publishedVersion
dc.identifier.uri.fl_str_mv http://old.scielo.br/scielo.php?script=sci_arttext&pid=S0102-311X2009000600004
url http://old.scielo.br/scielo.php?script=sci_arttext&pid=S0102-311X2009000600004
dc.language.iso.fl_str_mv eng
language eng
dc.relation.none.fl_str_mv 10.1590/S0102-311X2009000600004
dc.rights.driver.fl_str_mv info:eu-repo/semantics/openAccess
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv text/html
dc.publisher.none.fl_str_mv Escola Nacional de Saúde Pública Sergio Arouca, Fundação Oswaldo Cruz
publisher.none.fl_str_mv Escola Nacional de Saúde Pública Sergio Arouca, Fundação Oswaldo Cruz
dc.source.none.fl_str_mv Cadernos de Saúde Pública v.25 n.6 2009
reponame:Cadernos de Saúde Pública
instname:Fundação Oswaldo Cruz (FIOCRUZ)
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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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