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

Translated Title
Estigma, metáforas deformadoras e experiência moral de pacientes com hanseníase multibacilar em Sobral, Ceará, Brasil
Abstract

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.

More information

Type
Journal Article
Author
Nations MK
Lira GV
Catrib AMF
Year of Publication
2009
Journal
Cadernos de saude publica
Volume
25
Issue
6
Number of Pages
1215-24
Date Published
2009 Jun
Language
eng
ISSN Number
1678-4464
Call Number
NATIONS 2009
DOI
10.1590/s0102-311x2009000600004
Alternate Journal
Cad Saude Publica
Publication Language
eng