Amsterdam Institute of Social Science Research (AISSR), the Netherlands.
SAHARA J. 2013 Jul;10 Suppl 1:S17-27. doi: 10.1080/02664763.2012.755320.
Disclosure of HIV status occurs for a variety of reasons and in various contexts, such as to sexual partners to enable safer sexual choices, to health-care workers to access treatment and care services and to family and community members to gain various forms of support. The reasons for disclosure or non-disclosure are shaped by the relationships, needs and circumstances of people living with HIV (PLHIV) at the time of disclosure. The purpose of this study was to investigate and describe the act and experience of disclosure in order to understand how these experiences of disclosure impact on the lives of PLHIV on antiretroviral (ARV) treatment and influence adherence to treatment. Using a qualitative research design, I conducted an ethnographic study at and through the referral clinic at the Tygerberg Hospital in Cape Town, South Africa. Ninety-three adult patients (75 women) participated in the study, 32 of whom were visited at home to conduct semi-structured in-depth interviews, and 61 of them participated in a cross-sectional study at the referral clinic using researcher-administered questionnaires. A general inductive approach was used to analyse the data. Participants in both arms of the study disclosed mainly to family members, then partners and then to friends and other persons; only five had not disclosed to anyone at all. In deciding to disclose or not, the author began to see how patients negotiated their disclosure. From weighing up other people's reactions, to being concerned about the effect of their disclosure on their disclosure targets, to concealing one's status to evade untoward negative reactions towards themselves. Further, negotiating one's disclosure is not only about to whom or how to disclose, it also means finding good opportunities to disclose or conceiving ways of hiding one's status and/or medication from others in order to enhance access and adherence to their ARV treatment. Perceived rather than actual stigma played an important role in decisions not to disclose. Nonetheless, HIV remains a highly stigmatising disease. The author suggests that both the gains in support and the evasion of negative reactions from the disclosure will continue to drive negotiation of disclosure of one's status in order for patients to access and remain adherent to their treatment. Thus, areas of disclosure and concealment as they influence one's adherence to treatment need to be investigated further to facilitate adherence to treatment.
HIV 状况的披露出于多种原因，并在各种情况下进行，例如向性伴侣披露以做出更安全的性选择，向医疗保健工作者披露以获得治疗和护理服务，向家人和社区成员披露以获得各种形式的支持。披露或不披露的原因取决于当时 HIV 感染者（PLHIV）的关系、需求和环境。本研究的目的是调查和描述披露行为和体验，以了解这些披露经历如何影响接受抗逆转录病毒（ARV）治疗的 PLHIV 的生活，并影响他们对治疗的坚持。本研究采用定性研究设计，在南非开普敦泰格伯格医院的转诊诊所内外进行了民族志研究。93 名成年患者（75 名女性）参与了这项研究，其中 32 名在家中接受了半结构化深入访谈，61 名在转诊诊所使用研究人员管理的问卷参加了横断面研究。采用一般归纳方法分析数据。研究的两个部分的参与者主要向家庭成员、然后是伴侣、再是朋友和其他人披露；只有五个人根本没有向任何人透露过。在决定是否披露时，作者开始看到患者如何协商他们的披露。从权衡他人的反应，到担心他们的披露对披露对象的影响，再到隐瞒自己的状况以避免对自己产生不利的负面反应，作者发现，协商披露不仅仅是向谁或如何披露，还意味着寻找合适的机会披露，或构思出隐藏自己的状况和/或药物的方法，以增进他们对 ARV 治疗的获取和坚持。感知到的而不是实际的污名在不披露的决定中起着重要作用。尽管如此，HIV 仍然是一种高度污名化的疾病。作者认为，支持的增加和对披露的负面反应的回避将继续推动对自己状况的披露的协商，以使患者能够获得并坚持他们的治疗。因此，需要进一步研究披露和隐瞒的领域，以促进对治疗的坚持。
