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揭示卢旺达尼亚马舍克区受 Podoconiosis 影响人群所经历的多重污名化现象。

Uncovering intersecting stigmas experienced by people affected by podoconiosis in Nyamasheke district, Rwanda.

机构信息

Centre for Gender Studies, College of Arts and Social Sciences, University of Rwanda, Kigali, Rwanda.

Centre for Global Health Research, Global Health and Infection Department, Brighton and Sussex Medical School, University of Sussex, Brighton, United Kingdom.

出版信息

PLoS Negl Trop Dis. 2024 Oct 21;18(10):e0012603. doi: 10.1371/journal.pntd.0012603. eCollection 2024 Oct.

Abstract

BACKGROUND

Podoconiosis is a stigmatising neglected tropical condition, but the nature of podoconiosis stigma has not been fully explored. There is a growing understanding that the experience of stigma is intersectional, yet no research has been done on this matter in relation to podoconiosis. The aim of this paper is to contribute to the understanding of podoconiosis-related stigma by illustrating how multiple individuals' positionalities intersect to shape the experience of stigma due to podoconiosis.

METHODS

We used qualitative research to explore the experience of stigma among people affected by podoconiosis. Data were gathered using participant observation, interviews, focus group discussions and participatory methods. A total of 59 participants, including patients, local leaders, community health workers, and family members, were purposively selected to participate in this study.

FINDINGS

We identified three features in which stigma related to podoconiosis was grounded. These were bodily deformation, illness contamination and bodily weakness. The experience of stigma was shaped by the convergence of multiple individual positionalities and identities. Social positionalities and identities based on socio-economic, gender, age and illness status intersected to shape podoconiosis stigma.

CONCLUSION

Our study demonstrates that the experience of stigma due to podoconiosis is intersectional, going beyond biological features of podoconiosis. The stigma experienced by affected individuals is complex, and shaped by the convergence of social structures and many individual identities such as socio-economic status, gender, disability and age. This understanding is crucial to analysing stigma related to podoconiosis, or other NTDs, and for designing interventions that address stigma that arise from biological aspects of disease and social factors simultaneously. Such holistic interventions can significantly improve the well-being of those affected by podoconiosis.

摘要

背景

Podoconiosis 是一种有耻辱感的被忽视的热带病,但 podoconiosis 耻辱感的性质尚未得到充分探索。人们越来越认识到耻辱感是交叉的,但尚未就这一问题在 podoconiosis 方面开展任何研究。本文的目的是通过说明由于 podoconiosis 而导致的耻辱感如何因多个个体的位置相交而形成,从而为理解 podoconiosis 相关的耻辱感做出贡献。

方法

我们使用定性研究来探索受 podoconiosis 影响的人所经历的耻辱感。使用参与式观察、访谈、焦点小组讨论和参与性方法收集数据。共有 59 名参与者,包括患者、当地领导、社区卫生工作者和家庭成员,被有目的地选中参加这项研究。

结果

我们确定了三个与 podoconiosis 相关的耻辱感的特征。这些特征是身体变形、疾病污染和身体虚弱。耻辱感的经历是由多个个体位置和身份的交汇形成的。基于社会经济、性别、年龄和疾病状况的社会位置和身份相互交叉,形成了 podoconiosis 耻辱感。

结论

我们的研究表明,由于 podoconiosis 而产生的耻辱感是交叉的,不仅仅局限于 podoconiosis 的生物学特征。受影响个体所经历的耻辱感是复杂的,是由社会结构和许多个人身份(如社会经济地位、性别、残疾和年龄)的交汇形成的。这种理解对于分析与 podoconiosis 或其他 NTD 相关的耻辱感以及设计同时针对疾病的生物学方面和社会因素引起的耻辱感的干预措施至关重要。这种整体干预措施可以显著改善受 podoconiosis 影响的人的幸福感。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/1451/11527326/1610663f1878/pntd.0012603.g001.jpg

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