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

2009; Escola Nacional de Saúde Pública, Fundação Oswaldo Cruz; Volume: 25; Issue: 6 Linguagem: Inglês

10.1590/s0102-311x2009000600004

ISSN

1678-4464

Autores

Marilyn Kay Nations, Geison Vasconcelos Lira, Ana María Fontenelle Catrib,

Tópico(s)

Complementary and Alternative Medicine Studies

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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