Effects of Racial Identity, Socioeconomics, and Stigma on the Experience of Those Effected by Leprosy in Minas Gerais, Brazil Público
Conner, Bailey (Spring 2019)
Published
Abstract
Brazil has the second highest rate of leprosy, worldwide, and incidence has had no significant decrease in recent years. Novel insight, approaches, and perspectives to the issue are necessary to address this disease. Perceptions of racial identity, socioeconomics, and stigma are often overlooked in colloquial discourse regarding those affected by leprosy. This project intended to assess the role sociocultural factors in patient’s experiences with leprosy. Ultimately, these findings could contribute to an improvement in patient care, treatment options, and policies impacting those living with leprosy. A series of twelve interviews and three oral histories were conducted at a clinical diagnostic center, Hospital Eduardo de Menezes, and former leprosarium, Santa Isabel; both in, and around, the city of Belo Horizonte, Brazil. Interviews focused on, but not were not limited to, topics such as perceived racism, experiences with providers, experiences of socioeconomic factors affecting access to care, and effects of stigma when accessing care. Participant responses highlighted that their experiences were collectively shaped by their racial identity, income, and stigma. Race was expected to have a much more profound effect on patient experience, but this was not the case. Across all participants, socioeconomics and primarily stigma, had much more impactful effects on patient experiences. While the largest amount of respondent variation occurred between those treated within the colony and those treated as outpatients, perception of stigma appeared across the board as having a negative effect on patient experiences. A heightened focus on addressing leprosy-related stigma among clinicians and locals would enhance medical training, improve patient and provider experiences, and ultimately reduce stigma against those affected by leprosy. Additionally, novel and intersectional approaches to leprosy—specifically combining biological and sociocultural focuses—are needed to bolster the narratives of those affected, and ultimately improve control and treatment.
Table of Contents
Table of Contents
Chapter 1: Introduction..........................................................................................1
Chapter 2: Literature Review.................................................................................6
Methodology…………………………………………………………………….25
Chapter 3: Results................................................................................................ 28
Chapter 4: Discussion and Conclusion.................................................................39
Implications……………………………………………………………………..46
References............................................................................................................48
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