'My biggest fear was that people would reject me once they knew my status...': stigma as experienced by patients in an HIV/AIDS clinic in Johannesburg, South Africa
'My biggest fear was that people would reject me once they knew my status...': stigma as experienced by patients in an HIV/AIDS clinic in Johannesburg, South Africa
复制标题
DOI：
10.1111/j.1365-2524.2009.00881.x
复制
发表时间：
2010-03-01
影响因子：
2.4
通讯作者：
Walker, Liz
中科院分区：
文献类型：
--
作者：
Gilbert, Leah;Walker, Liz
病耻感不是一个新概念；然而，在南非艾滋病毒/艾滋病的背景下，它仍然非常重要。人们普遍认为，与艾滋病毒/艾滋病有关的耻辱损害了该疾病患者的福祉。本文是一项更大的研究的一部分，该研究旨在了解与南非抗逆转录病毒治疗（ART）的提供和结果相关的社会和文化复杂性。它探讨和分析接受抗逆转录病毒治疗的患者如何感知和经历耻辱，以及耻辱如何影响他们对这一流行病的行为以及他们对这一流行病的理解。这些数据是通过2007年6月至11月期间在南非约翰内斯堡资源有限的一家艾滋病毒/艾滋病诊所对44名患者进行的深入面对面访谈收集的。调查结果表明，感觉和预期的耻辱程度是强烈的，影响到艾滋病毒/艾滋病感染者的各个方面，特别是披露和治疗。参与本研究的接受抗逆转录病毒治疗的艾滋病毒阳性患者的经历中弥漫着耻辱感。与艾滋病毒/艾滋病相关的强烈耻辱可能威胁到抗逆转录病毒治疗的价值，从而影响艾滋病毒/艾滋病感染者的日常生活。这项研究表明，艾滋病流行三十年来，污名化仍然是艾滋病毒/艾滋病患者经历的一个核心特征。在进行这项研究的诊所中，艾滋病毒/艾滋病被视为一种慢性疾病，通过不断获得抗逆转录病毒治疗，可以逐渐得到控制。然而，这种方法并不被许多持高度污名化观点的家庭成员、邻居和雇主所认同。
Stigma is not a new concept; however, it remains highly significant in the context of HIV/AIDS in South Africa. There is wide consensus that HIV/AIDS-related stigma compromises the well-being of people living with the disease. This paper is part of a larger study that seeks to understand the social and cultural complexity related to the provision and outcomes of antiretroviral therapy (ART) in South Africa. It explores and analyses how patients on ART perceived and experienced stigma and how it has shaped their behaviour towards, as well as their understanding of the epidemic. The data have been collected by means of in-depth face-to-face interviews, conducted between June and November 2007, with a sample of 44 patients in an HIV/AIDS clinic in a resource-limited setting in Johannesburg, South Africa. The findings reveal that the level of felt and anticipated stigma is intense and affects all dimensions of living with HIV/AIDS, particularly disclosure and treatment. Stigma permeates the experience of HIV-positive people on ART who participated in this study. The intensity of HIV/AIDS-related stigma can threaten to compromise the value of ART, thus impacting on the daily lives of people living with HIV/AIDS (PLWHA). This study suggests that three decades into the epidemic, stigmatisation remains a core feature of the patient experience of HIV/AIDS. In the clinic in which this research was conducted, HIV/AIDS was regarded as a chronic condition increasingly manageable by ongoing access to ART. However, this approach was not shared by many family members, neighbours and employers who held highly stigmatised views.