Explaining adherence success in sub-Saharan Africa: an ethnographic study.

Explaining adherence success in sub-Saharan Africa: an ethnographic study.
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解释撒哈拉以南非洲的坚持成功:一项人种学研究。

DOI:
10.1371/journal.pmed.1000011
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发表时间:
2009-01-27
期刊:
影响因子:
15.8
通讯作者:
Bangsberg, David R.
Bangsberg, David R.
中科院分区:
医学1区
文献类型:
--
作者:
Ware, Norma C.;Idoko, John;Kaaya, Sylvia;Biraro, Irene Andia;Wyatt, Monique A.;Agbaji, Oche;Chalamilla, Guerino;Bangsberg, David R.

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撒哈拉以南非洲地区的艾滋病毒/艾滋病感染者通常服用了90%以上的抗逆转录病毒治疗处方剂量。这一数字超过了在北美观察到的依从性水平,消除了早期对在极端贫困环境中依从性不足的担忧。本文以撒哈拉以南非洲三个国家的民族志研究结果为基础,提供了抗逆转录病毒治疗依从性成功的解释和理论模型。采用人种学研究方法对撒哈拉以南非洲艾滋病毒感染者坚持抗逆转录病毒治疗的决定因素进行了研究。在尼日利亚乔斯的艾滋病毒治疗地点,对252名接受抗逆转录病毒治疗的人、他们的治疗伙伴和卫生保健专业人员进行了414次面对面访谈;坦桑尼亚达累斯萨拉姆;以及乌干达的姆巴拉拉。还对诊所活动进行了136次实地观察。使用类别构建和解释方法对数据进行分析。研究结果表明,接受抗逆转录病毒治疗的个体通常通过一系列旨在优先坚持治疗的深思熟虑的策略来克服坚持治疗的经济障碍:借用和“乞讨”运输资金,做出“不可能的选择”来分配有利于治疗的资源,以及“不做”。通过治疗伙伴、其他家庭成员和朋友以及卫生保健提供者提供的资源和帮助,实现了坚持治疗的优先次序。帮助者希望病人能坚持下去,并让他们知道自己的期望,让病人有责任坚持下去。患者坚持促进帮助者的善意,从而确保在未来有需要时可以获得帮助。在撒哈拉以南非洲,坚持成功可以解释为履行社会责任的一种手段,从而在基本关系中保留社会资本。利用来自尼日利亚、坦桑尼亚和乌干达的人种学数据,Norma Ware及其同事研究了为什么撒哈拉以南非洲的艾滋病药物依从性比北美高得多。自1981年以来,获得性免疫缺陷综合症(艾滋病)流行病已造成2 500多万人死亡,目前约有3 000万人(仅在撒哈拉以南非洲就有2 200万人)感染了导致艾滋病的人体免疫缺陷病毒(艾滋病毒)。艾滋病毒破坏免疫系统细胞,使受感染的人容易受到其他感染。在艾滋病流行的早期,大多数hiv感染者在十年内死亡,但在1996年,抗逆转录病毒联合疗法(ART)——一种强效药物的混合物——被开发出来。对于生活在富裕发达国家的艾滋病毒感染者来说,艾滋病毒/艾滋病已成为一种慢性病,但对于生活在低收入和中等收入国家的数百万感染者来说,艾滋病毒/艾滋病仍然是一种死刑——抗逆转录病毒疗法太贵了。2003年,这种情况被宣布为全球卫生紧急情况。今天,通过各国政府、国际组织和供资机构的共同努力,发展中国家和转型期国家中急需挽救生命的抗逆转录病毒药物的近三分之一的人获得了他们所需的免费、可靠的药物供应。为了使抗逆转录病毒药物起作用,必须定期服用。如果错过了药物剂量,病毒就会反弹,更有可能产生对抗逆转录病毒治疗的耐药性。在贫穷国家,尽管免费的抗逆转录病毒药物越来越多,但坚持抗逆转录病毒治疗的许多障碍仍然存在。这些障碍包括经济障碍(例如,前往诊所的费用和与诊所就诊相关的收入损失),以及社会、文化和行为障碍。例如,一些病人害怕被披露。其他人则收到了关于抗逆转录病毒治疗益处的相互矛盾的信息。然而,尽管人们担心发展中国家扩大抗逆转录病毒治疗的规模会受到依从性不足的困扰,但撒哈拉以南非洲的艾滋病毒/艾滋病患者通常服用了处方剂量的90%以上的抗逆转录病毒治疗,这比北美的依从性更高。在这项研究中,研究人员通过分析在尼日利亚、坦桑尼亚和乌干达进行的人种学研究的定性数据,调查了为什么抗逆转录病毒治疗依从性在撒哈拉以南非洲如此之高。定性数据通常用于解决“如何”和“为什么”的研究问题:民族志是描述和解释人类行为和文化的综合定性方法。在他们的研究中,研究人员采访了158名患者,45名治疗伙伴(帮助艾滋病毒阳性患者坚持治疗的非专业人员)和49名卫生保健工作者。患者被问及他们的抗逆转录病毒治疗经历以及他们从治疗伙伴那里得到的帮助;伴侣被问及他们提供的帮助类型以及他们对这种帮助的感受;卫生保健工作者被要求描述一次典型的诊所访问,并指出如何讨论依从性。从这些访谈和对临床会议的观察中,研究人员确定了患者及其治疗伙伴用于克服抗逆转录病毒治疗坚持的经济障碍的几种策略。其中包括借款和“乞讨”资金来支付去诊所的费用,做出“不可能的选择”来优先考虑依从性,以及“不做就做”。研究人员的分析还表明,坚持抗逆转录病毒治疗的优先次序反映了关系作为管理经济困难资源的重要性。因此,例如,他们发现治疗伙伴和卫生保健工作者期望患者坚持抗逆转录病毒治疗(通过改善患者的健康,提高他们支持自己和家人的能力),并使他们的期望为人所知,从而使患者有责任坚持治疗。反过来,病人坚持他们的治疗,以促进他们的帮助者的善意,从而确保他们继续提供帮助。这一发现为撒哈拉以南非洲地区坚持服药的成功提供了可能的解释。对抗逆转录病毒治疗的高度坚持可以解释为履行社会责任的一种手段。研究人员认为,坚持治疗不仅能改善个人健康(在资源丰富的环境中坚持治疗的主要驱动力),而且还能保留基本关系中的“社会资本”。换句话说,在撒哈拉以南非洲,坚持治疗可能会保护生活在极端贫困中的人赖以生存的人际关系。请通过本摘要的在线版本http://dx.doi.org/10.1371/journal.pmed.1000011访问这些网站。这项研究由Agnes Binagwaho和Niloo Ratnayake在PLoS Medicine Perspective上进一步讨论。信息来自美国国家过敏和传染病研究所关于HIV感染和艾滋病的信息。HIV InSite有关于HIV/艾滋病各个方面的全面信息,包括一篇关于抗逆转录病毒治疗的文章。信息来自Avert,一个国际艾滋病慈善机构。关于非洲艾滋病毒和艾滋病的情况(包括关于尼日利亚和乌干达艾滋病毒/艾滋病的详细资料)以及为数百万人提供艾滋病药物治疗的情况世界卫生组织提供关于普遍获得艾滋病毒治疗的信息(以几种语言提供)美国疾病控制和预防中心也提供关于全球努力对付艾滋病毒/艾滋病流行病的信息
Individuals living with HIV/AIDS in sub-Saharan Africa generally take more than 90% of prescribed doses of antiretroviral therapy (ART). This number exceeds the levels of adherence observed in North America and dispels early scale-up concerns that adherence would be inadequate in settings of extreme poverty. This paper offers an explanation and theoretical model of ART adherence success based on the results of an ethnographic study in three sub-Saharan African countries. Determinants of ART adherence for HIV-infected persons in sub-Saharan Africa were examined with ethnographic research methods. 414 in-person interviews were carried out with 252 persons taking ART, their treatment partners, and health care professionals at HIV treatment sites in Jos, Nigeria; Dar es Salaam, Tanzania; and Mbarara, Uganda. 136 field observations of clinic activities were also conducted. Data were examined using category construction and interpretive approaches to analysis. Findings indicate that individuals taking ART routinely overcome economic obstacles to ART adherence through a number of deliberate strategies aimed at prioritizing adherence: borrowing and “begging” transport funds, making “impossible choices” to allocate resources in favor of treatment, and “doing without.” Prioritization of adherence is accomplished through resources and help made available by treatment partners, other family members and friends, and health care providers. Helpers expect adherence and make their expectations known, creating a responsibility on the part of patients to adhere. Patients adhere to promote good will on the part of helpers, thereby ensuring help will be available when future needs arise. Adherence success in sub-Saharan Africa can be explained as a means of fulfilling social responsibilities and thus preserving social capital in essential relationships. Using ethnographic data from Nigeria, Tanzania, and Uganda, Norma Ware and colleagues examine why levels of adherence to HIV/AIDS drugs are so much higher in sub-Saharan Africa than in North America. The acquired immunodeficiency syndrome (AIDS) epidemic has killed more than 25 million people since 1981, and about 30 million people (22 million in sub-Saharan Africa alone) are currently infected with the human immunodeficiency virus (HIV), which causes AIDS. HIV destroys immune system cells, leaving infected individuals susceptible to other infections. Early in the AIDS epidemic, most HIV-infected individuals died within ten years but in 1996, combination antiretroviral therapy (ART)—a mixture of powerful drugs—was developed. For HIV-infected people living in affluent, developed countries, HIV/AIDS became a chronic disease, but for the millions of infected people living in low- and middle-income countries, HIV/AIDS remained a death sentence—ART was simply too expensive. In 2003, this situation was declared a global health emergency. Today, through the concerted efforts of governments, international organizations, and funding bodies, nearly one-third of the people in developing and transitional countries who are in immediate need of life-saving ART receive free, reliable supplies of the drugs they need. For ART to work, it must be taken regularly. If drug doses are missed, the virus can rebound and resistance to ART is more likely to develop. In poor countries, even though free antiretroviral drugs are increasingly available, many obstacles to good adherence to ART remain. These include economic obstacles (for example, the cost of traveling to clinics and the loss of earning associated with clinic attendance), and social, cultural, and behavioral barriers. Some patients fear disclosure, for example. Others receive conflicting messages about the benefits of ART. However, despite worries that the scale-up of ART provision in developing countries would be dogged by inadequate adherence, people living with HIV/AIDS in sub-Saharan Africa generally take more than 90% of their prescribed doses of ART, a better level of adherence than in North America. In this study, the researchers investigate why ART adherence is so high in sub-Saharan Africa by analyzing qualitative data from an ethnographic study done in Nigeria, Tanzania, and Uganda. Qualitative data are often used to address “how” and “why” research questions: ethnography is a comprehensive qualitative approach to describing and explaining human behavior and culture. For their study, the researchers interviewed 158 patients, 45 treatment partners (lay-people who help HIV-positive people keep to their treatment), and 49 health care workers. Patients were asked about their experiences of ART and about the help they received from their treatment partners; partners were asked about the type of help they gave and about their feelings about this help; health care workers were asked to describe a typical clinic visit and to indicate how adherence was discussed. From these interviews and observations of clinic sessions, the researchers identified several strategies used by patients and their treatment partners to overcome economic obstacles to ART adherence. These included borrowing and “begging” funds to pay for travel to clinics and making “impossible choices” to prioritize adherence, and “doing without.” The researchers' analysis also indicates that the prioritization of adherence to ART reflects the importance of relationships as a resource for managing economic hardship. So, for example, they found that treatment partners and health care workers expected patients to adhere to ART (which, by improving patients' health, improves their ability to support themselves and their families) and made their expectations known, thereby creating a responsibility among patients to adhere. Patients, in turn, adhered to their treatment to promote good will from their helpers and thus ensure their continuing help. The findings offer a possible explanation of adherence success in sub-Saharan Africa. The high level of adherence to ART can be explained as a means of fulfilling social responsibilities. Adherence, the researchers suggest, not only improves personal health (the main driver for ART adherence in resource-rich environments) but also preserves “social capital” in essential relationships. In other words, in sub-Saharan Africa, adherence to treatment may protect the relationships that individuals living in extreme poverty rely on to help them survive. Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1000011. This study is further discussed in a PLoS Medicine Perspective by Agnes Binagwaho and Niloo Ratnayake Information is available from the US National Institute of Allergy and Infectious Diseases on HIV infection and AIDS HIV InSite has comprehensive information on all aspects of HIV/AIDS, including an article about to antiretroviral therapy Information is available from Avert, an international AIDS charity, on HIV and AIDS in Africa (including detailed information on HIV/AIDS in Nigeria and Uganda) and on providing AIDS drug treatment for millions The World Health Organization provides information about universal access to HIV treatment (in several languages) The US Centers for Disease Control and Prevention also provides information on global efforts to deal with the HIV/AIDS pandemic
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