{"id":2015,"date":"2011-05-17T12:59:20","date_gmt":"2011-05-17T12:59:20","guid":{"rendered":"http:\/\/www.faceofmalawi.com\/?p=2015"},"modified":"2011-05-17T12:59:20","modified_gmt":"2011-05-17T12:59:20","slug":"asking-god-about-the-date-you-will-die-hiv-testing-as-a-zone-of-uncertainty-in-rural-malawi","status":"publish","type":"post","link":"https:\/\/new.faceofmalawi.com\/index.php\/2011\/05\/17\/asking-god-about-the-date-you-will-die-hiv-testing-as-a-zone-of-uncertainty-in-rural-malawi\/","title":{"rendered":"Asking God about the date you will die: HIV testing as a zone of uncertainty in rural Malawi"},"content":{"rendered":"\n
\"\"Amy Kaler1<\/sup> and Susan Watkins2<\/sup><\/div>\n
1<\/sup>University of Alberta. Email: akaler@ualberta.ca<\/a><\/div>\n

2<\/sup>University of Pennsylvania\/UCLA. Email: swatkins@ccpr.ucla.edu<\/a><\/p>\n

Abstract<\/strong><\/div>\n
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Testing for HIV is becoming more available in Africa. Global advocates of testing see it as key to AIDS prevention. However, testing is not always perceived as a good thing by people at risk. Here, we consider testing from the perspective of people in a high-prevalence community. Using qualitative data from rural Malawi, we show that the decision to test is not as straightforward as suggested in the testing advocacy literature, but is marked by uncertainty and ambivalence. Reluctance to test is connected to the perception that testing inevitably leads to a positive diagnosis, and subsequent deterioration and death. This fear is in turn linked to overestimation of the transmissibility of HIV. We recommend that testing advocates address this concern that being tested means having a death sentence pronounced, and emphasize the benefits of testing for the majority who are HIV-negative, as well as the minority who are HIV-positive.<\/div>\n
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1. Introduction<\/strong><\/div>\n<\/div>\n
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In the past few years testing for HIV has become widely available in sub-Saharan Africa. International organizations and national governments promote testing by making it accessible and free, and by energetic campaigns encouraging citizens to seek it out. From the perspective of testing advocates it is a valuable, even critical, addition to the arsenal of HIV prevention activities. Specifically, proponents of testing expect that those who are positive will be motivated to ensure that they do not transmit their infection to others, while those who learn they are negative will be motivated to be even more risk-averse.<\/div>\n
The availability of testing, however, is not always perceived as an unambiguously good thing by the millions in Sub-Saharan Africa who are unaware of their serostatus. People who believe they have never risked infection may see no need for testing, and they may be right. Those who believe they are certain to have contracted the virus may also see no need for testing — for, in effect, \u201casking God about the date you will die.\u201d<\/div>\n
In this paper we consider testing from the perspective of ordinary people in a high-prevalence region, the same people whom the global HIV prevention community believes will most benefit from it. Using a set of ethnographic journals written by local field assistants living in rural Malawi, we show that when people talk informally with each other about AIDS, issues of risk, behavior change, and agency are perceived as neither simple nor self-evident, but are marked by great uncertainty.3<\/a><\/sup> Neither the public health nor the social science literature deals well with uncertainty. Much like the policy statements disseminated by the global AIDS community and reflected in official Malawian documents, most publications on AIDS in African communities, especially those oriented to influencing programs or policies, produce definite, unequivocal statements. \u201cAIDS orphans are a growing problem in the community\u201d or \u201cyoung people have negative attitudes towards condom use\u201d (to name two of the current preoccupations in the literature) are presented as unambiguous truths, as certainties. In contrast, the ambivalence and equivocation that we find in AIDS-talk in rural communities in Malawi does not often find expression in policies and programs. Ambivalence and equivocation, however, may be a more accurate reflection of the realities of AIDS in rural Malawi than definite and positive statements4<\/a><\/sup>.<\/div>\n
We draw a parallel between responses to HIV testing and previous responses to the epidemic itself, in order to suggest that the uncertainty that now characterizes talk about testing in rural Malawi may come to be resolved. Previous work using ethnographic journals showed that early in the epidemic there was great uncertainty about whether it was possible to prevent HIV by changing one\u2019s behavior (Kaler 2004a<\/a>; Watkins 2004<\/a>]).5<\/a><\/sup> Men in particular appeared to be divided on the question of whether or not behavior change to reduce one\u2019s risk of contracting HIV was worth the effort (Kaler 2004a<\/a>). The effort involved in switching to condom use or struggling against one\u2019s desires for sex appeared large to them, and the benefits uncertain, as one might have already contracted the virus from earlier risky sex. In any case it was widely perceived that even those who had so far escaped infection were still likely to die of AIDS, either because HIV infection and death were fated, whether by God or destiny, or because of the power of natural urges.<\/div>\n
Subsequently, however, that uncertainty about HIV prevention largely vanished. The possibility of catching HIV and dying has come to be seen as a result of willful disregard of danger \u2013 now that everyone knows about HIV and AIDS-related information is everywhere, putting oneself at risk of HIV is a deliberate act, undertaken in full knowledge of the possible consequences. An example illustrates. Here the field assistant and two other men are discussing their lives and loves as they farm:<\/p>\n
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B. said that \u2026 nine months had passed since he had sex with his sexual partners in Thyolo [a town in the east of Malawi] without using condoms. He said that nowadays he is looking after his life properly and has a healthy life, and if he had already caught it [HIV], let it be the only virus which entered into his body and he didn\u2019t want to add [more viruses] for life is so precious nowadays. He said that \u2026 he will not say he is not going to be having sex, but he said he [will be] using \u2018brake pads\u2019 [condoms]!<\/div>\n
K. said that taking [getting] AIDS nowadays is by choice. He said that there are lots of messages concerning AIDS and people who follow them are the ones who stay longer in life without dying of it. He continued saying that taking AIDS nowadays is by the choice of the man for there are many condoms that are distributed free of charge and if you want to buy them in shops, \u2026 you can afford it, for it\u2019s cheap. (Simon 060106).<\/div>\n<\/blockquote>\n<\/div>\n
This transformation in discourse was accomplished through frequent and often intense discussions in local social networks. These interactions with friends, relatives and neighbors now emphasize that prevention is feasible and effective, so much so that speakers criticize those who they believe have contracted AIDS because they ignored the government\u2019s prevention messages and the good advice of their friends, relatives and neighbors.<\/div>\n
There are, however, new sources of uncertainty. The institutional and therapeutic context has changed, as it has in other high-prevalence countries in sub-Saharan Africa. There are new possibilities for testing and treatment, and new messages announcing that it is important to \u201cknow your status\u201d so that you can be counseled on how to \u201clive positively\u201d with HIV. As we will show in this paper these new possibilities and the accompanying directives from the international prevention community and the Government of Malawi have generated new zones of uncertainty. Although talk about testing now displays the ambivalence and equivocation that formerly coalesced around behavior change to prevent infection, that same talk may eventually resolve the uncertainty about testing.<\/div>\n
The ethnographic journals show that the existence of testing was a topic of conversation by 2002. Then it was considered as a theoretically possible course of action, but one that was located in cities, geographically and conceptually distant from everyday life. By 2005 the expansion of testing facilities and the provision of free antiretroviral drugs had made testing and treatment much more concrete. At the same time, however, these new options generated new debates. In the excerpt below, a field assistant overheard two men chatting on a bus. The first man says he is on his way to get a HIV test, the second one postulates a positive HIV diagnosis, the first replies that the advantage of the diagnosis is that one can be advised \u201con medical grounds\u201d what to do.<\/p>\n
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The whole story started when these two started to ask each other where they were going. The first gentlemen said he was going to Blantyre to buy goods for his shop while the other one said he was going to Zomba for voluntary counseling and testing.<\/div>\n
Then the other man asked him, while puzzled, saying \u201c[why] have one\u2019s blood tested, why [not] just staying [without testing]? If one has got HIV\/AIDS he will start to get sick, [there is no need] to go and have one\u2019s blood tested. \u2026 I cannot go for blood test because once they tell me at the hospital that I am HIV positive that means I am already dead and there is nothing I can do in my life because I will know for sure that no matter what, my life is gone, so it is better just to stay without knowing your blood status\u201d. His friend [said] \u201cWhat do you mean by saying once you are found HIV positive you will do nothing?\u201d He answered back confidently \u201cI cannot work hard in everything, like making plans for my future life or doing development work at my home, or finding means to get money \u2026 since I [would] know already that I am HIV positive and dead\u201d.<\/div>\n
His friend \u2026 shook his head in disagreement. \u2026 \u201cI think you are very much far [away from the truth] in your mind by what you are saying about voluntary counseling and testing. \u2026 Let\u2019s suppose one is found with HIV, you are advised on what foods to eat, you are also advised on medical grounds and how you can avoid spreading the disease to others and also how you can avoid increasing the virus in your body just for you to stay long period of time before you die. And if one followed the instructions given at the VCT, he can stay for over twenty years with HIV before he starts suffering and dies, not that once you are found HIV positive it means you\u2019re dead\u201d. (Chikondi_050212)<\/div>\n<\/blockquote>\n<\/div>\n
Before 2003 none of the field assistants reported more than one or two conversations about testing in a year. These often referred to announcements on the radio or in the newspapers or to people who went to the city, were tested, and died soon after. By 2004 we begin to see more references to relatives and friends in the village who had been tested, and by 2006 we begin to read of people who were once thin and dying of AIDS but are now seen to be plump and healthy due to the new medicines.<\/div>\n
Before presenting further local perspectives on testing, we briefly describe the perspectives of the global AIDS community and the Government of Malawi, followed by a description of our data and analytic methods and then our analysis. We show that there is considerable uncertainty about testing in rural Malawi, both within individuals who are ambivalent about the goodness of testing and across the wider community, as some argue for testing and others against it. As testing becomes more ordinary we expect that the discourse in local social networks about the \u201cgoodness of testing\u201d and \u201cthe badness of testing\u201d will change, just as earlier uncertainty about the possibility of behavior change has largely been resolved in these communities. Our larger, and we believe more generalizable point, is that what appear to distant advocates as certainties may not be perceived as certain by the recipients of their advice. Thus programs and policies based on confident assertions may not be as effective as those that identify and respond to evidence of uncertainty.<\/div>\n<\/div>\n<\/div>\n
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2. HIV testing and the fight against AIDS<\/strong><\/div>\n<\/div>\n
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The vast expansion of opportunities for Voluntary Counseling and Testing (VCT) in rural Malawi is a consequence of the prominence of advocates of VCT in the global AIDS prevention community and the response of international donor organizations to advocates\u2019 calls for vastly increased funding. The public statements promoting testing are confident, just as earlier calls for behavior change through abstinence, fidelity and condom use had been. The World Health Organization has made testing the first of its strategic priorities for tackling HIV, ahead of prevention, treatment expansion, strengthening national health systems and better epidemiological information (WHO 2007<\/a>). In 2003 Kevin DeCock, director of the WHO Department of HIV\/AIDS, declared that \u201cUniversal voluntary knowledge of HIV serostatus should be a prevention goal\u201d and that \u201cfacilitation of HIV testing is central to responding effectively to the epidemic in Africa\u201d (De Cock et al. 2003<\/a>:1847). Shortly thereafter UNAIDS and WHO issued a joint statement on testing, asserting that \u201camong the interventions that play a pivotal role in both prevention and treatment, testing and counseling stand out as paramount\u201d (UNAIDS\/WHO 2004<\/a>). This position on the critical importance of testing has been maintained up to the present, as in UNAIDS\u2019 recent policy brief on testing:<\/p>\n
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UNAIDS and WHO are supporting a major expansion of access to HIV testing and counseling through the scaling up of client-initiated testing and counseling services and through the expansion of provider-initiated testing and counseling services in health care settings. Such efforts are not only necessary to improve the health of individuals, they are also necessary to achieve universal access to prevention, treatment, care and support and to mount effective responses against HIV. (UNAIDS 2008<\/a>)<\/div>\n<\/blockquote>\n<\/div>\n
The Gates Foundation, the largest funder of HIV programming in the world, has called for expansion of testing to be an integral part of scaling-up treatment, and leading multilateral organizations have concurred (GHPWG 2004<\/a>).<\/div>\n
Many African leaders in AIDS prevention have also publicly expressed great confidence in the expansion of testing. Karim, Karim, and Baxter, for example, argue with no caveats that testing should be the cornerstone of a comprehensive AIDS prevention and treatment program for South Africa (Karim et al. 2003<\/a>:1499). In South Africa, AIDS organizations even launched a national contest to win 100,000 Rand, which required proof of testing to enter.<\/div>\n
The Government of Malawi echoed such calls for increased testing even before testing facilities were available to the 85% of the population that lives in the rural areas. Long before rural Malawians could have a reasonable hope of getting tested, after attending a United Nations summit on AIDS the Minister of Health distributed a press release saying that VCT must be available and accessible to all (Banda 2001<\/a>). In Malawi\u2019s application to the Global Fund for AIDS, Tuberculosis and Malaria, VCT was justified as seen as a basis for entry into support services for those with AIDS, but also as \u201c\u2026a strategy for change of sexual lifestyle for the prevention of HIV infection\u2026.\u201d (Republic of Malawi n.d.<\/a>: 24).<\/div>\n
The media brought VCT to the attention of citizens, both through coverage of official statements and through feature articles and opinion pieces. An analysis of all surviving newspaper articles on AIDS published in one of Malawi\u2019s major newspapers, The Daily Times,<\/em> found 8 articles on VCT in 2001 and 2002, with titles such as \u201cAIDS and Us: Testing and HIV\u201d, \u201cAIDS and Us: Living With HIV\u201d and \u201cAIDS and Us: What HIV Counseling Is\u201d (Chisi 2001a<\/a>, 2001b<\/a>, 2001c<\/a>).6<\/a><\/sup> Newspapers are available in rural Malawi, and press coverage is mentioned in the earliest conversations about testing and treatment, which begin to appear in our ethnographic data at that time.<\/div>\n
Malawi was one of the first two countries to receive support from the Global Fund. By late 2004 and early 2005 testing began to be available in the rural areas, first at district hospitals and then at clinics. Access expanded rapidly, such that by mid-2006 there were 325 facilities with the capacity to test for HIV and 1505 trained counselors (Republic of Malawi 2006<\/a>: 20). The Ministry of Health initiated a \u201cTesting Week\u201d in 2006, during which testing was also available at an additional 324 temporary outreach sites (Republic of Malawi 2006<\/a>, Table 5, p.21). The theme of the campaign was \u201cPlan Your Future: Go for HIV Testing Today.\u201d (Republic of Malawi 2006<\/a>).<\/div>\n
The rationale presented in the planning documents for Testing Week was that it would be first, a gateway to treatment, and second, an opportunity to deliver prevention messages to those who were infected and those who were negative:<\/p>\n
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The benefits of knowing one\u2019s HIV sero-status are now well known and [more] easily accessible than at any other point in time since the epidemic was known in this country in 1985. HIV testing is an entry point to access highly active antiretroviral therapy if that person is found HIV positive and is eligible. Antiretroviral therapy has dramatically improved the quality and duration of life for many Malawians living with HIV and may also reduce the risk for transmission by decreasing the viral load. HIV testing also affords one an opportunity to access other key HIV and AIDS care, support and preventive services. (Republic of Malawi 2006<\/a>:2)<\/div>\n<\/blockquote>\n<\/div>\n
At this time HIV prevalence in Malawi was approximately 12%; thus the vast majority of Malawians were HIV-negative. Yet the benefits of testing for those who were not HIV-positive received short shrift in the document, which stated simply that:<\/p>\n
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For the majority \u2026 who are not infected, HIV testing and counselling will assist in reducing risk behaviour for HIV infection (Republic of Malawi 2006<\/a>: 26).<\/div>\n<\/blockquote>\n<\/div>\n
Along similar lines, in launching the Testing Week campaign, the Minister of Health said that \u201cHIV\/Aids prevention efforts could come to naught if people do not come forward for treatment because they do not know they carry the virus.\u201d That only 15% of sexually active Malawians knew their results, she added, \u201cposes a great threat to prevention efforts\u2026\u201d (Mail and Guardian 2006<\/a>). The educational material used to train counsellors for Testing Week also reinforced the message that \u201cpositives\u201d should receive more attention than \u201cnegatives\u201d. (Ministry of Health 2007<\/a>).7<\/a><\/sup> As we discuss below, the prioritizing of \u201cpositives\u201d over \u201cnegatives\u201d has significant and probably unintended consequences for individual Malawians considering testing.<\/div>\n
Despite the confident statements above, behind the scenes there is less robust certainty that testing should be a top priority for containing the epidemic. Within the research community there is no consensus on whether knowing one\u2019s serostatus changes risk behavior for the better: (for reviews, see Auerbach et al. 2005<\/a>; Obermeyer and Osborn 2007<\/a>; Yeatman 2007<\/a>). Responding to an article in The Lancet<\/em> that called for universal testing in developing countries (Bunnell and Chrutich 2008<\/a>), James Shelton concludes that the effects of VCT on sexual behavior have been modest (Shelton 2008<\/a>). There is also a vigorous debate at the international level over the modalities of testing: should it be initiated by providers as a routine part of health care or should it continue to be initiated by the individual? Those who advocate routine testing emphasize the importance of testing as a gateway to treatment for those who are positive, whereas those who oppose routine testing argue that it would overwhelm already-strained health facilities in poor countries, that it could intensify stigma and violence (again, a speculation that focuses on the positives), and that it violates a human right \u201cnot to know\u2019 one\u2019s status (for a review, see Bass 2006<\/a>; for the social consequences of routine opt-out testing in Malawi, see Angotti et al. 2009<\/a>).<\/div>\n
In contrast to these debates in the international community, among policy makers in Malawi there seems to have been little controversy about the benefits of testing. The only hint of ambivalence about the value of testing that we have found are rumors that circulated among stakeholders that those who had learned from testing that they were positive were then retaliating by deliberately infecting others; the National AIDS Commission and UNICEF-Malawi took this possibility seriously enough to commission a study (Dzilankhulani et al 2005<\/a>; Morah 2007<\/a>8<\/a><\/sup>).<\/div>\n<\/div>\n<\/div>\n
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3. Data<\/strong><\/div>\n<\/div>\n
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In 1997 Watkins and several colleagues began a longitudinal research project, the Malawi Diffusion and Ideational Change Project (MDICP), on the role of social networks in influencing responses to the AIDS epidemic in rural Malawi. After the first wave of the core survey in 1998, the researchers had a great deal of quantitative data about the composition and structure of the social networks in which rural Malawians talked about AIDS. They had not, however, learned much about the content of the social conversations – what people said to each other about AIDS or their strategies for avoiding infection and death \u2014 and semi-structured interviews conducted in 1999 to address these questions were disappointing. The researchers thus improvised. They asked several high school graduates who had worked as short-term survey interviewers for the MDICP and who lived in or near the sample villages to be participant-observers as they went about their daily routines. If they overheard anything concerning AIDS they were to make mental notes of what people said and did, and then write their recollections in commonplace school notebooks that evening or soon thereafter. It was emphasized that they were not to interview, but rather just to listen to the talk going on around them. Approximately one-third of the interactions recounted in the journals took place in public places such as markets or child health clinics, one third while in transit, on foot, by bus or by bicycle, and one-third in other locations.9<\/a><\/sup><\/div>\n
More than 900 journals, covering thousands of conversations, have been written by a total of 22 field assistants since 1999 and subsequently typed and coded.10<\/a><\/sup> The field assistants\u2019 close networks, the ones in which they routinely spend most time, are homophilous in terms of social characteristics, as are close networks elsewhere (McPherson et al. 2001<\/a>), but many of the conversations they overhear have a very diverse cast of characters. For example, the most prolific of the female field assistants is on many committees in her community and sometimes attends regional or national meetings of these groups; the male field assistants often hang out in a nearby trading center, at the bus stop or at a bar. The women write primarily about women\u2019s conversations, the men about men\u2019s, reflecting the gendered interaction typical of the communities in which they live (Marshall 1970<\/a>).<\/div>\n
Nine female field assistants and thirteen males contributed to our corpus of texts, with three (two males, one female) contributing very frequently, 13 frequently, and six only occasionally. They write in English, a language learned in school, and use parentheses or carets (< >) to set off their explanatory comments or untranslatable expressions in the local language. We have retained idiosyncrasies in grammar and spelling, although on occasion we insert obviously missing words in brackets or make minor grammatical changes in the interest of legibility. The excerpts used here have been anonymized to remove any identifying information, and the field assistants are given pseudonyms. Each excerpt is dated in year, month, day format (e.g. Alice 040611).<\/div>\n
We have several caveats regarding this method. First, as in surveys, semi-structured interviews, and focus groups, we cannot draw a straight line between what people say and what they do. We believe that what people say to each other is different from what they say to an interviewer with a clipboard, but presentation of self is an issue in informal as well as formal settings. Second, we only know what the field assistants remembered and wrote down about what they heard. Third, because we left it up to the journalists to decide what a \u201cconversation about AIDS\u201d was, the journals include only what they considered to be \u201cabout AIDS\u201d and of interest to us.<\/div>\n
Field assistants were paid for each journal, so we were alert to the possibility of fakery. We have evaluated the journals in the light of other information (e.g. from the survey and the semi-structured interviews). In addition, because some of the more notorious characters in the area appear in the journals of more than one journalist, and some actors appear in more than one journal, we have examined internal and cross-journalist consistency. Most convincing, however, are the internal qualities of the journals, such as the relative absence of clich\u00e9d situations and characters (Kaler 2003<\/a>). We (and other readers of the journals) are struck by their quality of verisimilitude. While only extended excerpts from many journals could make this point fully convincing, it is evident as one reads these journals that only a novelist as gifted as Dickens could have created such a variety of voices, situations, incidents, and viewpoints as have our multiple field assistants.<\/div>\n<\/div>\n<\/div>\n
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