Department of Community & Environmental Sociology, University of Wisconsin-Madison, United States.
Soc Sci Med. 2018 Mar;201:9-17. doi: 10.1016/j.socscimed.2018.01.021. Epub 2018 Feb 2.
This paper analyzes the effects of antiretroviral therapy (ART) on the social worlds of people living with HIV and ART (PLHA) in rural northern Zambia. Studies have demonstrated high rates of ART adherence over a range of sites in southern Africa. Drawing on a year of ethnographic research conducted in Zambia's Mukungule chiefdom between 2006 and 2008, this study investigates expectations of this exemplary adherence, and experiences of treatment failure. Motivated by the life and AIDS-related death of a Mukungule resident, Grace, it moves beyond asking "what made initial cohorts of African PLHA exceptionally adherent?" to raise the pressing question of "what happens next?" Previous scholarship addressing this question has analyzed how PLHA navigate the competing moral and political economies of local kinship and social networks and global HIV/AIDS initiatives. Scholars have emphasized the afterlives of access and adherence, looking beyond survival to what "the good life" means for PLHA, and placing PLHA at the center of action and analysis. This paper flips that script, by focusing on the stories that Grace's death spurred Mukungule residents to share. It shows how attention to and analysis of stories told not just about, but by members of PLHA's kinship and social networks, are critical to developing a more robust understanding of exemplary adherence and treatment failure. Such understanding critically depends on paying more attention to how those living with and caring for PLHA (and especially their families) facilitate PLHA's pursuit of good and "normal" lives - not just while, but also through, pursuing their own.
本文分析了抗逆转录病毒疗法(ART)对赞比亚北部农村地区 HIV 感染者和接受抗逆转录病毒疗法者(PLHA)的社会世界的影响。研究表明,在南部非洲的一系列地点,接受抗逆转录病毒治疗者的依从率都很高。本研究基于 2006 年至 2008 年在赞比亚的 Mukungule 酋长领地进行的为期一年的民族志研究,调查了对这种典范性依从的期望,以及治疗失败的经历。受 Mukungule 居民 Grace 的生活和艾滋病相关死亡的启发,本研究超越了“是什么让最初的非洲 PLHA 人群表现出异常的依从性?”这一问题,提出了一个紧迫的问题:“接下来会发生什么?”以前的研究分析了 PLHA 如何在当地亲属关系和社交网络以及全球艾滋病毒/艾滋病倡议的竞争道德和政治经济中进行导航。学者们强调了准入和依从性的后续影响,超越了生存,探讨了“美好生活”对 PLHA 的意义,并将 PLHA 置于行动和分析的中心。本文扭转了这一局面,关注 Grace 之死促使 Mukungule 居民分享的故事。它展示了如何关注和分析不仅是关于,而且是由 PLHA 的亲属关系和社交网络成员讲述的故事,对于更深入地了解典范性依从和治疗失败至关重要。这种理解的关键在于更加关注那些与 PLHA 一起生活和照顾他们的人(尤其是他们的家人)如何促进 PLHA 追求美好和“正常”的生活——不仅在追求自己的生活时,而且在追求 PLHA 的生活时也是如此。