Department of Sociology, University of Alberta, 5-25 HM Tory Building, Edmonton, Alberta T6G 2H4, Canada.
Soc Sci Med. 2018 Aug;211:175-182. doi: 10.1016/j.socscimed.2018.06.025. Epub 2018 Jun 27.
Despite access to antiretroviral testing and treatment, high rates of mortality among HIV infected infants and young children persist, often because they are diagnosed too late to benefit from treatment. Most research assumes that treatment delays are a proxy indicator for ongoing HIV-related stigma. My argument is different. Instead I argue that secrecy and truth-telling are socially produced; that is I consider how gendered and intergenerational dynamics regulate how and to whom secrets should be shared. In this article I draw on two years of ethnographic fieldwork (2008-2010) in Northern Malawi with 35 HIV positive children, their primary caregivers, as well as multiple interviews with their extended therapy networks [N = 96] and community stakeholders [N = 72] to examine how social hierarchies influenced the timing of an HIV diagnosis for infected infants. My findings indicate that it is neither necessary nor strategically advantageous for some women to disclose their HIV status to their husbands. Rather, grandparents play pivotal roles at facilitating HIV disclosure between intimate partners, which in turn leads to timely HIV diagnoses for infected children. This article contributes to a body of literature that questions the usefulness of the concept of "stigma" for understanding late presentation for ART among infants and children.
尽管可以进行抗逆转录病毒检测和治疗,但艾滋病毒感染的婴儿和幼儿的死亡率仍然很高,这通常是因为他们被诊断得太晚,无法从治疗中受益。大多数研究假设治疗延迟是与艾滋病毒相关的耻辱感持续存在的替代指标。我的论点则不同。相反,我认为保密性和说实话是社会产生的;也就是说,我考虑了性别和代际动态如何调节秘密应该与谁分享以及如何分享。在本文中,我利用 2008 年至 2010 年在马拉维北部进行的为期两年的民族志实地调查(共 35 名艾滋病毒阳性儿童、他们的主要照顾者,以及对他们的扩大治疗网络[96 人]和社区利益攸关方[72 人]的多次采访),研究社会等级制度如何影响受感染婴儿的艾滋病毒诊断时间。我的研究结果表明,对于一些女性来说,向丈夫透露其艾滋病毒状况既没有必要,也没有战略优势。相反,祖父母在促进伴侣之间的艾滋病毒披露方面发挥着关键作用,这反过来又导致受感染儿童及时进行艾滋病毒诊断。本文为质疑“耻辱感”这一概念在理解婴儿和儿童接受抗逆转录病毒治疗时的迟报现象的有用性的文献提供了补充。