Literature DB >> 19503952

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

Marilyn K Nations1, Geison Vasconcelos Lira, Ana Maria Fontenelle Catrib.   

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.

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Year:  2009        PMID: 19503952     DOI: 10.1590/s0102-311x2009000600004

Source DB:  PubMed          Journal:  Cad Saude Publica        ISSN: 0102-311X            Impact factor:   1.632


  8 in total

Review 1.  Leprosy in the 21st century.

Authors:  Cassandra White; Carlos Franco-Paredes
Journal:  Clin Microbiol Rev       Date:  2015-01       Impact factor: 26.132

2.  Experiences of living with leprosy: A systematic review and qualitative evidence synthesis.

Authors:  Norana Abdul Rahman; Vaikunthan Rajaratnam; George L Burchell; Ruth M H Peters; Marjolein B M Zweekhorst
Journal:  PLoS Negl Trop Dis       Date:  2022-10-05

3.  Meaning of leprosy for people who have experienced treatment during the sulfonic and multidrug therapy periods.

Authors:  Karen da Silva Santos; Cinira Magali Fortuna; Fabiana Ribeiro Santana; Marlene Fagundes Carvalho Gonçalves; Franciele Maia Marciano; Silvia Matumoto
Journal:  Rev Lat Am Enfermagem       Date:  2015 Jul-Aug

4.  A Cluster-Randomized Controlled Intervention Study to Assess the Effect of a Contact Intervention in Reducing Leprosy-Related Stigma in Indonesia.

Authors:  Ruth M H Peters; Marjolein B M Zweekhorst; Joske F G Bunders; Wim H van Brakel
Journal:  PLoS Negl Trop Dis       Date:  2015-10-20

5.  Changing stigmatisation of leprosy: an exploratory, qualitative life course study in Western Nigeria.

Authors:  Bassey Ebenso; James Newell; Nick Emmel; Gbenga Adeyemi; Bola Ola
Journal:  BMJ Glob Health       Date:  2019-03-07

6.  Patients help other patients: Qualitative study on a longstanding community cooperative to tackle leprosy in India.

Authors:  Seong Hye Jung; Hee Won Han; Hyeonseok Koh; Soo-Young Yu; Nobutoshi Nawa; Ayako Morita; Ken Ing Cherng Ong; Masamine Jimba; Juhwan Oh
Journal:  PLoS Negl Trop Dis       Date:  2020-01-13

7.  The meaning of leprosy and everyday experiences: an exploration in cirebon, indonesia.

Authors:  Ruth M H Peters; Mimi Lusli; Beatriz Miranda-Galarza; Wim H van Brakel; Marjolein B M Zweekhorst; Rita Damayanti; Francisia S S E Seda; Joske F G Bunders
Journal:  J Trop Med       Date:  2013-03-20

8.  Factors Contributing to the Delay in Diagnosis and Continued Transmission of Leprosy in Brazil--An Explorative, Quantitative, Questionnaire Based Study.

Authors:  Mary Henry; Noêmi GalAn; Katherine Teasdale; Renata Prado; Harpreet Amar; Marina S Rays; Lesley Roberts; Pedro Siqueira; Gilles de Wildt; Marcos Virmond; Pranab K Das
Journal:  PLoS Negl Trop Dis       Date:  2016-03-15
  8 in total

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