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Misconceptions about AIDS in Africa: Ours and Theirs
- 1. The Malawi Diffusion and Ideational Change Project www.malawi.pop.upenn.edu Professor Jere Behrman, University of Pennsylvania Dr. Agnes Chimbiri, University of Malawi Professor Hans-Peter Kohler, University of Pennsylvania Professor Susan Watkins, University of Pennsylvania & CCPR, UCLA Dr. Eliya Zulu, African Population and Health Research Centre, Nairobi, Kenya The MDICP has been supported by the Rockefeller Foundation and NIH
- 2. Misconceptions That Matter: Ours and Theirs
- 3. Our Misconceptions About Responses to AIDS in Rural Malawi • They don’t talk about AIDS or sex • They either deny the AIDS epidemic or are fatalistic about prevention • They are afraid to be tested because they will be stigmatized • Young single women are particularly vulnerable because they are poor, passionless and powerless.
- 5. Malawi Data Surveys –Longitudinal panel interviewed in 1998, 2001, 2004 and 2006 –Rural sample in 3 districts –Includes males and females, adults and adolescents –Sample sizes: • 1998 and 2001, approximately 2500 • 2004 approximately 4000, (added new spouses & 1500 adolescents to rejuvenate the sample)
- 6. Data Quality • Reporting: Miller, Zulu & Watkins 2000: systematic discrepancies in reports of monogamously married husbands and wives • Validity--Hewett & Mensch 2007, Pop Council, ACASI, adolescents; • Reliability--Bignami 2003 duplicate interviews • Attrition—Alderman et al 2000, Anglewicz et al forthcoming • Sample representativeness—Bignami et al 2003, Anglewicz et al forthcoming • Interviewer effects—Onyango 2007
- 7. Related Quantitative Studies • Intrafamilial transfers (Weinreb 2002) • Faith-based orgs (Trinitapoli,Lungo, Manda, Phiri 2007; Regnerus & Trinitapoli 2007) • Expectations (Delavande & Kohler 2007) • Incentives (Kohler, Thornton in process) • Trust & Transfers (Chao, Kohler) • Sexual networks (Helleringer, Kohler) • VCT & ART (Fleming, Yeatman, Angotti, in process)
- 8. Biomarkers –2004 and 2006 for HIV and other sexually transmitted infection –Testing in homes –Results in tents or at home
- 9. Consequences of morbidity & mortality 2008-2012 • 2 more survey rounds • biomarker-assessed health status (HIV, CRP, TfR, EBV and glyc. hemoglobin) • short-run nutritional status (BMI) • anthropometric indicators of early-life conditions (height, leg-length, • Testosterone 2D:4D digit ratios);
- 10. Qualitative Data – Interviews • With randomly selected subsamples of the survey respondents • Interviews with clergy • Ad hoc interviews & participant observation • Data quality—mobile men – Ethnographic field journals Sources: Many of the interviews and field journals (anonymized for confidentiality) are available on www.malawi.pop.upenn. See also Watkins and Swidler 2007 for the ethnographic methods.
- 11. History of Prevention Efforts • 1980s: blood screening but little else, even in urban areas • 1994—2001: – President leads an AIDS march in 1994 – permits government officials to work with donors on AIDS policy, – permits donors to market condoms – Increasing newspaper coverage • 2002: Govt finalizes an “integrated behavior change intervention strategy”
- 12. Talking about AIDS & Sex
- 13. Conventional Wisdom – Malawi Council of Churches 2001: Workshop with the theme “Break the Silence” – Muula, A. & Mfutso-Bengo, J. 2004, Nursing Ethics : "A culture of silence and resistance to change is prevalent in Malawi.” – Mtika, Collins, 2005, Daily Times: “That disease of silence is what is killing us.”
- 14. • Poster at office of NAC 2001. “It’s Time to Stop being Shy”: three men, one with his eyes covered and “I don’t want to see it”, another w/his mouth covered, “I can’t speak about AIDS”, another with his ears covered, “I can’t hear it.” Then “Why don’t we talk about AIDS [AIDS in red]. We all know someone who has died of AIDS. It’s time we began talking about AIDS. Because we can save lives that way.” • At the bottom, “It’s time to change–Let’s talk about AIDS”.
- 19. Three women talking About AIDS
- 20. Talking about AIDS • After we greeted each other, Mrs. Bruce said to me that I did well to come and mourn for Miss Baidon because she would have killed all the people of V___ and other men from the outside areas. Miss Baidon has died of AIDS as a salary or gift for what she was doing.
- 21. • Her friend who [wore] a traditional suit, green in colour and the white sandals answered. She said that the death of Miss Baidon has concerned her very much because she was sleeping with her husband. She had been quarreling with her husband for a long time because of her and her marriage was near to an end. Her husband was challenging her that he could divorce her and marry Miss Baidon.
- 22. • About the AIDS disease, the woman said that her husband was advised at the church by the church elders and the Nkhoswes [traditional marriage counselors] that these days life is difficult because there is no time for enjoyment since there is the AIDS disease. Having one woman and depend on her is a very good thing because you can save your life and your children’s life….Though her husband changed his behaviour but the woman was still worrying….
- 23. • Now if [Miss Baidon] was infected during that time that she was moving with her husband, it is openly that her husband was also infected and if he was infected it also means that she is also infected with that AIDS therefore she will just die for nothing.
- 24. • Her husband will kill an innocent woman like her. The woman was very worried a lot because she has children and she was saying that her children will suffer a lot if their parents will die because they are very young…. She began crying and I told her that she must stop crying because [she] had no evidence that she was also infected or not.
- 26. Social Autopsies – Symptoms – Medical history – Sexual biography • Source: Watkins, Santow, Bracher, Biruk 2006
- 28. Responses to the epidemic • Are “they” in denial?
- 29. Worried about getting AIDS Source: Table 1, K.P. Smith, S.C. Watkins. Perceptions of risk and strategies for prevention: responses to HIV/AIDS in rural Malawi. Social Science & Medicine 60 (2005) 652 649–660 Women 1998 (N = 878) Men 1998 (N = 675) Very Worried 61% 52% Moderately worried 22% 21% Not at all worried 17% 27%
- 30. • Are “they” fatalistic”?
- 31. Not fatalistic • Strategies of Prevention – ABC’s – Unexpected strategies • Source: Watkins 2004, PDR
- 32. Increase in justification for divorce Women 1998 (N = 878) Women 2001 (N = 878) Divorce justified if think husband has AIDS 16% 28% Table 2 K.P. Smith, S.C. Watkins. Perceptions of risk and strategies for prevention: responses to HIV/AIDS in rural Malawi. Social Science & Medicine 60 (2005) 652 649–660
- 33. ** = p<.05, * = p<.1 (robust: adjusted for clustering on respondent)Reniers, Georges. “Marital strategies for managing exposure to HIV in rural Malawi.” Forthcoming, Demography 0.01.02.03.04 0 10 20 30 marriage duration <= 1990 >1990 by year of marriage (adj.for marriage order) Smoothed divorce hazard
- 34. • Note that although the local strategies do not provide complete protection for all individuals, they will help some to avoid infection. Thus, they have the potential to reduce HIV transmission in the aggregate and thereby to slow and perhaps reverse the epidemic.
- 36. • Yoder & Matinga, 2004 – Interviewed VCT counselors – Interviewed 200 individuals asking would they like to be tested (hypothetical) – Concluded that Malawians not ready for testing • Afraid of stigma • Afraid because expected to be found positive and would die from the shock
- 37. MDICP 2004 • Testing in homes by nurses trained by the UNC lab • Tests for – HIV – Chlamydia, gonorrhea, trich Sources: Obare-Onyango 2007; Thornton et al 2005; Thornton 2006; compare with Yoder and Matinga
- 38. • 91% agreed to be tested
- 40. Receiving results • Receiving results: – Social event – Two-thirds received their results • Lab delays – Great happiness among 93%, esp. those who thought they were infected but found they were not – Sources: Thornton 2006, Obare-Onyango 2007
- 41. Talking about AIDS revisited • Disclosing HIV test result to a spouse: • In 2006, 86% of women and 92% of men reported disclosing their 2004 result to their spouse • Women: There are significant differences in disclosing HIV test result by actual HIV status for women. : 67% of HIV+ women told their test result to their spouse, compared with 86% of HIV negative women. • There are no significant differences by HIV status for men- over 90% of both HIV positive and HIV negative men reported disclosing their test result to their spouse.
- 42. Confirmation from spouse • Among husbands men who state that they disclosed their HIV status to their wife, only 4.4% of the wives disagree. Among women only 2.3% of husbands disagree. • By HIV status: A larger percentage of HIV positive respondents disagree with their spouse’s claim of disclosure. – Perhaps due to small sample sizes, these differences are not statistically significant.
- 43. Vulnerability of women • HIV + in 2004: – Men: 5.6% – Women: 7.9% Non-response analysis: Onyango 2007
- 44. Are young women more vulnerable? • Adolescents 15-19 HIV+ – Males=0.4% – Females=1.0%
- 45. Young single women? • HIV+, Women 15-24 – Unmarried Married • 1.50 % 6.17% • See also microsimulations of infection at lst marriage, Bracher, Santow and Watkins 2003
- 46. Probable explanations • Unmarried women • Unmarried men
- 47. Disease of women’s poverty-- or disease of men’s wealth? • “Poor, passionless, powerless women” • Men with money Sources: Tawfik & Watkins 2007; Swidler and Watkins, 2007; Poulin 2006 (for adolescents)
- 48. Their misconceptions –a short list • Probabilities of HIV transmission • Duration from infection to AIDS symptoms
- 50. Overestimating subjective likelihood of infection • Survey question: How likely do you think it is that you are currently HIV+? – Only about 10% of respondents who say it is highly likely that they are infected are correct Source: Anglewicz 2007; Anglewicz & Kohler 2007
- 51. Overestimating transmission probabilities • Survey question: If you have unprotected intercourse once with an HIV+ person, how likely are you to become HIV+? – Over 90% said “certain” or “highly likely”
- 52. Consequences of “our misconceptions” • IEC programs: if begin by believing that people don’t talk about AIDS, won’t ask them what they say • Misdirect efforts to what they already know • Don’t provide information on what don’t know • Behavior change programs: if don’t know what they are actually doing • Misdirect efforts to what they are already trying to do • Can’t learn where programs might actually help (e.g. re divorce) • Agency: if believe that uneducated rural people can’t do anything on their own, miss opportunities to support them in their efforts • Testing: if use hypothetical questions, can’t know what people will actually do
- 53. Discussion: “Our” misconceptions about “Their” Misconceptions” • “Their misconceptions” was based on conventional wisdom circulating in the prevention community • Wrong for rural Malawi
- 54. A misconception that matters • Overestimation of HIV transmission • Consequences: – Little incentive to adopt ABCs or other prevention approaches? – Barrier to VCT?
- 55. Recommendations • For us: – Skepticism about conventional wisdom – better research as a foundation for interventions • For rural Malawians: – Dissemination of correct & complete epidemiological information
- 56. Thanks
Hinweis der Redaktion
- This paper is based on a decade of research in rural Malawi that has produced a large number of papers. These are listed on the project web site, where many of the papers are posted. If there is a paper that is listed but not posted, let me know and I’ll send it to you. The data are also available on the project website, so that you can replicate our analyses
- The international community has responded to the AIDS epidemic in SSA with an outpouring of humanitarian policies and programs. I think much of this effort may be misdirected because it is based on our misconceptions about what is needed: we’ve tried to fix things that don’t need fixing, but haven’t noticed the things that do. I’m going to talk today only about the setting I know best, rural Malawi, based on analyses of the huge amount of data we have collected over the past decade. Since most policies and programs throughout the area are formulated and funded on a regional, and sometimes global, scale, it may be the case that effort and money has been misdirected elsewhere—but only detailed evidence, which I haven’t been able to find, would show that. Nonetheless, I hope that by documenting our, and their, misconceptions about AIDS in rural Malawi, others will be motivated to collect the necessary data.
- Since in my presentation I will not be able to provide exhaustive evidence for each misconception, I’m going to begin by briefly listing the major sets of data we have collected over the past decade in order to convince you that I know what I’m talking about—the Trust Me defense. More precise work is in papers by members of the MDICP team, and I’ll cite the sources.
- Many of the authors of these and other papers were graduate students who participated in field work and then went on to write their dissertations using the data they helped to collect: I hope that I’ll be able to attract some of the students in the audience to do the same!
- All samples are from rural Malawi. The first four are built on the core MDICP sample, shown in the last slide; the other three use different samples.
- The point here is that at the time our study begins, in 1998, prevention programs were few and far between. There was some dissemination, however, of basic information about the epidemiology of HIV. In a survey conducted in a rural area in 1993, 99% of men and women knew that AIDS was transmitted sexually and 95% said there was no cure for AIDS. Most respondents knew that you could be infected but look healthy and most said that AIDS could be prevented: Malawi has a long history of STDs (gonorrhea, syphilis, etc) so once they knew that HIV was transmitted sexually, they knew that it could be prevented by abstinence, fidelity and condom use, even before prevention programs start talking about the ABCs of prevention. .
- 1 st Misconception—people don’t talk about AIDS because of taboos, so there were campaigns to “Break the Silence”.
- The conventional wisdom is that people don’t talk about AIDS or sex. This led to lots of program efforts to “break the silence”.
- These newspaper articles and this poster are from 2001 to 2005. People began dying of AIDs in rural Malawi in the mid-late 1990s, so the poster is right, they all did know someone who has died of AIDS—and moreover, it was likely to be a relative, friend or neighbor whom they had seen change from healthy to thin and sick. By the time of our lst survey, in 1998, the respondents were attending 3-4 funerals a month, it is very unlikely a priori that they wouldn’t have talked about why these people died, about AIDS. And indeed they did—in 1998, well before the campaign to Break the Silence, we also asked people with how many they had talked about AIDS, the average was 3-4. And this, as you’ll see later, is likely to be an underestimate. It’s difficult to talk about AIDS without talking about sex if you know that HIV is sexually transmitted, and as early as 1993, a survey in Malawi showed that almost everyone did indeed know that HIV was transmitted sexually. Moreover, of course, sex is the stuff of scandal and gossip, it’s fun to talk about.
- These women aren’t talking at the moment the picture was taken, but they surely were before we arrived with a camera. They also talk at the market, walking to the grain mill, or just visiting a neighbor.
- These men hanging out at a small trading center look more like they’ve just been talking. When I tell new supervisors that our study is about gossip in social networks, they assume I’m talking about women. When I say No, men gossip also, they disagree, saying No, “men discuss”. But it turns out, of course, that men talk a lot about AIDS—and sex.
- How can we learn what they are saying about AIDS and sex? Hard to find out with standard approaches—survey doesn’t provide enough time, in semi-structured interviews they are laconic (see Zulu and Chepngeno 2003), focus groups are particularly poor at getting at this. So we tried a different approach, ethnographic field journals to give us an idea of what people say in natural settings, when they are chatting with each other about AIDS and sex, rather than when they are talking to an interviewer in a project t-shirt with a clipboard or a tape recorder. How can we find out what the women and men are saying to each other?
- We asked some people living in or near our research sites to be our “ears”, to simply listen to what people say about AIDS in the course of their daily lives, and then to write it down in field journals in the evening. Handwritten, then typed and sent to me. Now about 700 of these, starting in 1999, so can see change. Our field assistants are form 4 graduates, they work for us as interviewers when we are in the field I the summer, and then go back to being subsistence farmers or selling in the little markets. Their field journals are Being anonymized for public use, and coded for assessing themes and data quality. In some cases we can compare what is said in the journals with our other data. For example, the journals give the sense of profound worry about AIDS, which is supported by survey data.
- I’m going to show you an excerpt from a journal that illustrates what sort of data are in the journals and the sorts of things people say about AIDS. News has gotten around the village that a member of the community has died, the journalist knows her and is walking to the funeral when she meets two other women going to the funeral. She knows one of them, but the other is a stranger to her. Nevertheless, the stranger confides her urgent concerns, seeking advice from the other two.
- Miss Baidon, the deceased, was a well-known prostitute--in another journal, by another journalist, she is called a “veteran prostitute”. She started to become ill and “retired”, people could see as her body changed and one illness followed another.
- It’s clear that the wife knows about her husband’s infidelity. Although newspaper articles often describe women as socialized to defer to men, and especially to their husband, this women, like many others we overhear in the journal, is neither passive for deferential—she quarreled with him. .
- The woman may also have talked with her church elders and the traditional elders about her husband, since they give him advice. And it appears that he followed it. Still, she worries that it was too late—as she understands the epidemiology of HIV, he would surely have been infected by the prostitute and then certainly it would have been transmitted to her.
- Situations like this are very difficult for those who are living through them, especially those who are married. What should this woman do? . In this case the advice her friends give is, I think, much like the advice that a health professional would have given—that before she does anything drastic she should get tested. But suppose she is tested and finds she is still negative? What then should she do? One solution is to persuade her husband to use condoms every single time they have sex. There’s lots of evidence that women in Malawi are pretty good at getting their way, so maybe she could. But from our data, neither women nor men want to use condoms in marriage—and who could blame them? 30 years of condom use stretching out ahead of you? I doubt that health professionals would have any better advice than frriends, relatives and neighbors who acutely experience the difficulties of living with AIDS.
- A favorite topic is AIDS, and it’s hard to talk about AIDS without talking about sex.
- One common stimulus to talking about both AIDS and sex is when people see or hear about someone whose body status has changed, or when there is news of a funeral—as with the “veteran prostitute”. They then try to diagnose AIDS, pooling local knowledge to see if the illness or death is due to AIDS, in what we call “social autopsies”, or “social post mortems”. They often begin by describing the symptoms. Then, because they know the symptoms of AIDS are the same as the symptoms of other diseases, like TB and malaria, they act like good empiricists—they consider evidence to confirm or reject the diagnosis. The evidence comes from their local knowledge about the medical history and the sexual history of the person who is ill or who died. This local knowledge is often remarkably detailed—they how long the symptoms have been present, what treatments the person had, whether these were at a hospital or from a traditional healer, and even who paid forit. The sexual biographies are also a crucial part of the social postmortem, and again, these are remarkably detailed—so and so had a partner Jennifer who died of AIDS, or she married a man whose first wife had died of AIDS. Extramarital affairs are the stuff of gossip and scandal, in Malawi as elsewhere: Malawians are fond of saying “there is no secret under the sun”. In interviews conducted by Linda Tawfik with a subsample of the survey respondents, women were asked whether they knew any married women who had affairs, and then how they knew this. About a third of the respondents said they did know at least one woman. Some of them had been told by the woman herself, some by someone else, who then told the respondent (and perhaps many others), and some just observed—”I saw them coming and going.” Not only that, when the interviewer asked whether the couple used condoms, we learn that some did and some didn’t. The journals are also full of stories about a man or a woman caught in flagrante, “red-handed”—typically, neighbors know about the affair and tell the innocent spouse where and when the adulterous couple meet. Among men, there are conversations where the talk about sex is even more explicit, and sometimes quite raunchy—positions, the size of the partner’s clitoris, etc. In summary, it’s quite clear both from the survey data and from the journals that there is a lot of talk about AIDS and about sex, going back to 1998, well before the campaign to “break the silence” began.
- WHO tracks several “misconceptions”: surveys all over SSA report the % of respondents with “comprehensive AIDS knowledge”, including rejecting three misconceptions—that HIV is transmitted by mosquitoes, that it is transmitted by sharing plates, and that a healthy-looking person could not be HIV+. Yet in the social autopsies, when someone is diagnosed with AIDS it is never considered to be due to mosquitoes or sharing plates. People may not reject these misconceptions on a survey, but in rural Malawi they reject them in practice, when it counts. This is likely to be the same elsewhere: we analyzed UNAIDS data on these misconceptions vs HIV prevalence, by country, there’s virtually no association.
- The ethnographic journals project began in 1999, just a few years after deaths from AIDS began to be evident in the villages. At that there, there were certainly people who debate whether AIDS is really a new disease, or whether it is really witchcraft or just a new name for a traditional illness associated with improper sexual behavior. The arguments can be quite lively. By the early 2000s, hoever, virtually everyone is convinced that AIDS is a new disease, it is here and it has no cure. When friends, relatives and neighbors are getting thin, suffering from diarrhea, TB and other opportunistic infections, it’s not surprising that there would be little denial. Relatives may not want to announce AIDS as the cause of death at a funeral, perhaps out of propriety, but those walking to the funeral have already made the diagnosis.
- Seeing friends and neighbors is likely to lead people to worry about their own situation, and indeed they are. The survey data show that more than half are very worried, and more than two-thirds are either very worried or moderately worried. I’ve presented the survey results from 1998, to make clear that this worry goes back nearly a decade, again, well before there were widespread and intensive efforts to sensitize people about AIDS.
- They are clearly worried—but are they fatalistic?
- Lot of talk at boreholes and trading centers, even on buses, about strategies of prevention, before the govt’s integrated behavior change intervention policy started promoting the ABCs (and in any case, people already knew that these were the ways to prevent gonorrhea and other STIs). However, since AIDS, unlike the other STIs, had no cure, abstinence, fidelity and condom use become more salient and urgent as the epidemic spreads. Some continue to say that AIDS can’t be prevented, we will all die, but the ethnographic journals are full of debates about the best way to prevent AIDS. The main objection to the ABCs is that in their strict form they aren’t realistic. Thus, people try to adapt the ABCs in a way that will work for them. One approach is to modify the ABCs—not perfect abstinence and fidelity but fewer partners and more careful partner selection, based on the detailed local knowledge about sexual histories of neighbors; although consistent condom use is initially rejected, over time it comes to be seen as sensible to use condoms with commercial sex workers. Other strategies are new, i.e. they are not promoted by the international prevention community. This means that surveys didn’t ask about them, we only learned about them through our “ears” in the villages, from the ethnographic journals. One alternative strategy is to turn to religion for social support in resisting temptations or to drink (which they believe makes you muddle-headed so you forget your resolutions to be faithful). A second unexpected strategy is to divorce a spouse you think is infected . Again, there is survey data to support the local importance of these strategies.
- This is one of the questions that we initially put on the survey because we wanted to look at women’s autonomy. But after we learned from the journals that divorce was considered a prevention strategy, we looked more closely at the relationship between divorce and AIDS. Here we see a change in attitudes. The proportion saying that divorce is justified in case of adultery is even higher, probably because they think that since if one spouse is infected the other is certain to be, --as in the story following the death of the “veteran prostitute”—there’s no need to divorce, it’s too late.
- Divorce is difficult—it really takes a husband and a wife to even barely support a household in rural Malawi. So we might expect that people talk about it but don’t do it. Here, however, we see a change in practice: divorce occurs earlier in the marriage. And I expect that when we get the next rounds of our survey so that we can extend the red line, we’ll find it’s higher. We do know, however, that divorcing a spouse suspected to be adulterous is efficacious: s.An analysis by Reniers that includes a parameter for divorce and an interaction with the suspcian of adultery shows that sticking to a spouse suspected ofdultery increases a woman’s risks of infection by 64%. Divorce in the absence of perceived adultery (i.e. the direct effect of divorce) increases exposure to HIV more than threefold. The interaction effect ( EMA x divorced ), on the other hand, is negative, which indicates that divorcing an unfaithful spouse acts as a buffer against infection.Reniers also shows that In the longer term, however, divorce may incfrease infection due to the risks associated with searching for a new spouse. spouse and taking one’s chances on the marriage market may be counterproductive, resulting in increased rather than diminished exposure to HIV (particularly for women).
- It’s not the point of this presentation to say that the local strategies work. but I suspect they can work. Prevalence has stabilized in Malawi, as in several other countries, we don’t know why but it’s plausible that the local strategies contributed.
- The international prevention community has paid much attention to stigma and, as a result, so has the government of Malawi. Stigma is expected to have many consequences (e.g. employment, care of PLWAs), although I have not been able to find ANY rigorous evidence for this—it’s either anecdotes about individuals of interviews with people in PLWA support groups, clearly a biased sample—if a rural person is in a support group, it’s very likely because she or he was stigmatized. We find, however, very little evidence of isolating PLWAs or refusing to care for them (and of course, employment discrimination is not an issue when most are subsistence farmers on their own land or small-scale traders). Here I will focus on only one aspect of the conventional wisdom, that stigma inhibits testing. VCT is thought to be an important prevention technology (altho again the evidence is very weak and contradictory). Shortly before we tested for the lst time in
- Incentives: Because we were worried about stigma—a recent paper by Yoder and Matinga had concluded that Malawians were not ready to be tested because they were afraid of stigma, or that they would die from the shock of a positive result—we offered incentives to get their results.
- People may be worried about being stigmatized or dying from the shock of a positive result, but but it’s clear that that did not keep them from being tested when the test was actually provided conveniently, rather than a hypothetical questions (suggests that hypothetical questions are not a good way to evaluate acceptability of a new approach). .
- Near the tents in which results were given there are people waiting to get their own results—although the counseling is indeed private (no one can hear or see), people are not worried that others in their community know that they have been tested or came for their results. Although some who were tested received the result that they were positive, the nurses and interviewers at the testing sites saw no one leaving the tent looking worried or crying—although they must have been upset, they were quite capable of hiding their emotions.
- Social event: Receiving results was a social event in the sense that people often came with others—sometimes there were groups of 5-10 coming together. Lab delays: Two thirds received their results, suggesting that they did want to know their status. Because of the lab delays, some who were tested had died, were too sick to come, had moved, were away temporarily. In 2006 we again tested for HIV, and again 91% agreed to be tested; this time we used rapid blood tests, so virtually everyone wanted to, and did, get their results. Happiness: I’ll return to the issue of happiness later.
- It’s one thing to talk about other people becoming thin and dying because of AIDS, another thing to say that you yourself are positive. Yet there was a remarkable amount of disclosure about the results to spouses, relatives and friends. Is this too good to be true? Perhaps respondents are lying?
- Much attention in the international and national prevention community is given to what is believed to be the particular vulnerability of women to HIV. Ratios such as these have provided the evidentiary basis for targeting vulnerable women, and particularly young single women. It’s true that HIV transmission rates in studies of serodiscordant couples are higher from men to women than VV. But is that all we need to know?
- Young women do appear to be more likely to be infected, over twice as likely. . BUT again, is this all we need to know?
- There is now considerable evidence, both from Malawi and elsewhere in the region, that marriage is a major risk factor for HIV (see Bracher, Santow and Watkins , 2003, in Demographic_Research.org, an online journal, and Auvert et al, 2001, AIDS, Supplement 1, who also found marriage to be a risk factor in other countries).
- Unmarried women: sex infrequent and partners mostly young unmarried men (not “sugar daddies”, that’s a myth. For young men, sex is infrequent until they are old enough to have the resources to buy small gifts for chibwenzi, or, more importantly, to be able to pay CSWs.
- Women’s poverty blamed for the epidemic, leads them to transactional sex, don’t have power to say no or to negotiate condom use, don’t like sex. But research in rural Malawi by Poulin shows that they do have power to reject proposals, and they do so; also have power to end sexual relationships, and they do. Also research by Tawfik and Watkins: about a third of married women have extramarital partners because want money (for lotions as well as food), about 1/3 for sex (“husband is useless”), about a third for revenge for husband’s infidelity, “it’s democracy”. See also Mishra et al, 2007, AIDS, which analyzes several DHS surveys in sub-Saharan Africa, including the Malawi DHS. Analyzing individual-level data, they find HIV associated with wealth, not poverty. Reason to believe that AIDS is a disease of wealth as well—men’;s wealth. Richest countries (Safrica, Botswana) have highest prevalence. Malawi De3mographic and health survey 2004 shows prevalence highest among the wealthiest and among the most educated.
- As noted earlier, by the time of Tavrow’s 1993 study, people knew the fundamentals of the epidemiology of HIV transmission and prevention: that it was sexually transmitted, that a healthy-looking person could nonetheless be infected, that HIV could be prevented and that there was no cure for AIDS. In early 2006, ART began to be available in the rural areas for the first time, and people know that this is not a cure either—one will live longer, but will still die of AIDS. What they do not know, however, is that HIV is difficult to transmit.
- Many were surprised by their test results: in another paper, which accounts for the great happiness in the villages as people learned them.
- The common overestimation of transmission probabilities is also evident in the ethnographic field journals: a common saying is that “people who lie together die together”. This is is clearly a misconception: the actual transmission results, based on longitudinal studies of discordant couples, show that transmission probabilities are far lower, on the order of 1/1000 per act of unprotected intercourse with an infected person, about 8/1000 if one of them has an untreated STD, and a bit higher during the period of high viral load following initial infection or at the end-stage, when symptoms of AIDS appear.
- The conventional wisdom was probably based on imagination, introspection and/or anecdotes, rather than systematic research. Certainly some people are in denial or fatalistic, even now. But most are not. And in an aggregate phenomenon such as an epidemic, it matters what “most” know and do. Only carefully collected data and rigorous analyses can determine this. But if you believe the conventional wisdom, you won’t ask “how many people did you talk with about AIDS”, or collect ethnographic journals to find out what they say to each other rather than to an interviewer.
- The widespread misconception about the infectiousness of the HIV virus, however, has consequences. Most importantly, many people incorrectly think that they are infected, and thus may have little incentive to adopt prevention measures that are perceived to be difficult, such as strictly following the ABCs or divorcing a spouse. It is also likely that this misconception is a barrier to seeking voluntary counseling and testing, widely believed in the prevention community to be an important weapon of prevention. We coded the ethnographic journals for conversations about VCT: by far the most important reason for not testing that people gave to each other was “why get tested, I know I am positive.” As the results of our home-based testing showed, this does not keep most people who thought they were positive from getting tested. On the other hand, we made testing easy for them by bringing it to them, so that there were no costs in terms of transportation or opportunity costs in terms of labor.
- Our research shows that for most of our misconceptions about “them”, the rural Malawians, both survey data and qualitative data are consistent in showing that the conventional wisdom is wrong. But this conventional wisdom almost certainly inhibited systematic research, just as rural Malawian’s overestimate of the likelihood they were infected almost certainly inhibited their seeking VCT. The specific results for Malawi may not be generalizable elsewhere: while the conventional wisdom is similar, the response to the epidemic probably depends on local factors, particularly the stage of the epidemic: if prevalence is low, or if people haven’t yet begun to die from AIDS, there is likely to be less talk about AIDS, and possibly more stigma. But a generalization that I think does hold is that good research matters: I think much well-meat effort and many dollars have been devoted to telling people things that they already knew or that weren’t important for their ability to formulate and implement their own strategies of prevention.