Department of Sociology and Anthropology, Baruch College, City University of New York, One Bernard Baruch Way, New York, NY, USA;
J Int AIDS Soc. 2013 Oct 8;16:17978. doi: 10.7448/IAS.16.1.17978.
Antiretroviral therapy (ART) has rendered HIV and AIDS a chronic condition for individuals in many parts of the world. Adherence, however, is integral to achieving chronicity. Studies have shown both relatively high ART adherence rates in sub-Saharan Africa and the importance of community home-based care (CHBC) to facilitating this process. In light of diminished HIV and AIDS funding globally and increased reliance on CHBC throughout Africa, a better understanding of how CHBC may strengthen ART adherence is essential to improving patients' quality of life, tending to the needs of care supporters and achieving healthier populations.
This article reports findings from a qualitative study of a CHBC organiztion serving an estimated 2500 clients in rural Swaziland. Semi-structured questionnaires with 79 HIV-positive clients [people living with HIV and AIDS (PLWHA)] yielded data on diverse aspects of being HIV positive, including insights on whether and how PLWHA perceived care supporters to facilitate ART adherence in a high stigma and structurally impoverished setting.
Ninety-two percent of participants said their health had improved since care supporters came into their lives. A major finding was that an estimated 53% of participants said they would have died, a few from suicide had the care supporter never intervened. More than one in four participants (27.9%) sought HIV testing after a care supporter began visiting them. Nearly a third (31%) commenced ART after and largely as a consequence of care supporter intervention. Approximately one in four (23%) reported that their care supporter had helped them to disclose their HIV-positive status to family members. Twenty-seven percent said they had felt discouraged or had been discouraged from taking ART by members of their family or community.
General inductive analysis of participant reports suggested two social mechanisms of CHBC impact on ART adherence: (i) cultivating client-care supporter "talk" to enhance treatment uptake and literacy, reduce felt stigma and challenge social pressures to desist from ART and (ii) real-time interactions between clients and care supporters whereby the care "relationship" was itself the "intervention," providing lay counsel, material and financial assistance, and encouragement when clients suffered stigma, side effects and other obstacles to adherence. These social dynamics of adherence generally fall outside the purview of conventional clinical and public health research.
PLWHA reports of care supporter practices that enabled ART adherence demonstrated the pivotal role that CHBC plays in many PLWHA lives, especially in hard to reach areas. Relative to clinic personnel, care supporters are often intensely engaged in clients' experiences of sickness, stigma and poverty, rendering them influential in individuals' decision-making. This influence must be matched with on-going training and support of care supporters, as well as a clear articulation with the formal and informal health sectors, to ensure that PLWHA are correctly counselled and care supporters themselves supported. Overall, findings showed that PLWHA experiences of CHBC should be captured and incorporated into any programme aimed at successfully implementing the Joint United Nations Programme on HIV and AIDS (UNAIDS) Treatment 2.0 agenda Pillar 4 (increasing HIV testing uptake and care linkages) and Pillar 5 (strengthening community mobilization).
抗逆转录病毒疗法（ART）已使许多地区的艾滋病毒和艾滋病成为一种慢性病。然而，坚持治疗是实现慢性化的关键。研究表明，在撒哈拉以南非洲地区，ART 的坚持率相对较高，同时社区家庭护理（CHBC）对促进这一过程也很重要。鉴于全球艾滋病毒和艾滋病资金减少，以及非洲各地对 CHBC 的依赖增加，更好地了解 CHBC 如何加强 ART 坚持治疗对于改善患者的生活质量、满足护理支持者的需求以及实现更健康的人群至关重要。
本文报告了对一家为斯威士兰农村地区约 2500 名客户提供服务的 CHBC 组织进行的定性研究的结果。对 79 名艾滋病毒阳性患者[艾滋病毒感染者和艾滋病患者（PLWHA）]进行了半结构化问卷调查，这些患者提供了有关他们感染艾滋病毒的不同方面的数据，包括他们是否以及如何感知护理支持者在高污名和结构贫困环境中促进他们坚持接受 ART 治疗。
92%的参与者表示，自护理支持者进入他们的生活以来，他们的健康状况有所改善。一个主要发现是，约 53%的参与者表示，如果没有护理支持者的干预，他们可能已经死亡，其中一些人可能会自杀。超过四分之一的参与者（27.9%）在护理支持者开始拜访他们之后进行了 HIV 检测。近三分之一（31%）的参与者在护理支持者的干预下开始接受 ART 治疗，而且主要是因为护理支持者的干预。约四分之一（23%）的参与者报告说，他们的护理支持者帮助他们向家人透露了自己的艾滋病毒阳性状况。27%的人表示，他们的家人或社区成员曾让他们感到沮丧或劝阻他们接受 ART 治疗。
对参与者报告的一般归纳分析表明，CHBC 对 ART 坚持治疗的影响有两种社会机制：（i）培养客户与护理支持者之间的“对话”，以提高治疗的接受率和知识水平，减少感到的污名，并挑战社会压力，促使他们不停止 ART 治疗；（ii）客户与护理支持者之间的实时互动，护理“关系”本身就是“干预”，为客户提供非专业建议、物质和财务援助，并在客户遭受污名、副作用和其他坚持治疗障碍时提供鼓励。这些坚持治疗的社会动态通常不在传统临床和公共卫生研究的范围内。
PLWHA 报告的护理支持者实践，使他们能够坚持接受 ART 治疗，这表明 CHBC 在许多 PLWHA 的生活中发挥着关键作用，特别是在难以到达的地区。与诊所人员相比，护理支持者通常更深入地参与到客户的疾病、污名和贫困经历中，使他们在个人决策中具有影响力。这种影响力必须与对护理支持者的持续培训和支持以及与正式和非正式卫生部门的明确协调相匹配，以确保正确地为 PLWHA 提供咨询，并为护理支持者提供支持。总的来说，研究结果表明，应该了解 PLWHA 对 CHBC 的体验，并将其纳入任何旨在成功实施联合国艾滋病规划署（UNAIDS）艾滋病毒和艾滋病联合方案（UNAIDS）2.0 议程支柱 4（增加 HIV 检测率和护理联系）和支柱 5（加强社区动员）的方案。
