“It’s natural to look for a source”: A qualitative examination of alternative beliefs about HIV and AIDS in Cape Town,South Africa

Abstract

This article highlights how African men and women in South Africa account for the plausibility of alternative beliefs about the origins of HIV and the existence of a cure. This study draws on the notion of a “street-level epistemology of trust”—knowledge generated by individuals through their everyday observations and experiences—to account for individuals’ trust or mistrust of official claims versus alternative explanations about HIV and AIDS. Focus group respondents describe how past experiences, combined with observations about the power of scientific developments and perceptions of disjunctures in information, fuel their uncertainty and skepticism about official claims. HIV prevention campaigns may be strengthened by drawing on experiential aspects of HIV and AIDS to lend credibility to scientific claims, while recognizing that some doubts about the trustworthiness of scientific evidence are a form of skeptical engagement rather than of outright rejection.

Keywords

alternative beliefs conspiracy theories focus groups HIV South Africa trust young adults

1. Introduction

Treichler (1999) observed that HIV has spawned two epidemics, “simultaneously an epidemic of a transmissible lethal disease and an epidemic of meanings or signification” (p. 11). While the first epidemic is understood to spread through blood, through needles, between lovers, and between mothers and their children, the second epidemic is expressed in people’s beliefs and explanations about where HIV comes from, how it spreads, what constitutes the best form of treatment, and whether it can be cured. Sperber (1985) suggested that “the human mind is susceptible to cultural representations, in the way the human organism is susceptible to diseases,” asking, “why are some representations more successful in a human population, more contagious, more ‘catching’ than others?” (p. 74). In South Africa, the country with the highest number of people living with HIV, alternative beliefs about HIV—such as the man-made origins of the virus or the secret existence of a cure—remain “catching” (Bogart et al., 2011; Grebe and Nattrass, 2012; Nattrass, 2012; Tun et al., 2012). These beliefs appear to be on the rise; in a recurrent South African study, fewer respondents could correctly identify certain misconceptions about HIV, including the existence of a cure for AIDS, the role of witchcraft, and the idea that sex with a virgin can cure AIDS, in 2008 than could in 2005 (Shisana et al., 2009). Such alternative beliefs can undermine trust in and engagement with HIV prevention and treatment initiatives. Belief in the man-made origin of HIV is associated with lower likelihood of condom use (Bogart et al., 2011; Grebe and Nattrass, 2012; Tun et al., 2012) and HIV testing (Bogart et al., 2008; Tun et al., 2012) and lower uptake of antiretroviral (ARV) medication (Lennon and Kalichman, 2012). These associations make understanding such beliefs an important component of responding to the epidemic in South Africa.

One dominant framework for understanding alternative beliefs about HIV and AIDS is as conspiracy theories (Grebe and Nattrass, 2012; Nattrass, 2012; Tun et al., 2012). Defined as “a skeptical, paranoid, obsessive practice of scanning for signs and sifting through bits of evidence for the missing link” (Stewart, 1999), such beliefs arise, it is argued, to service certain psychological needs of those who endorse alternative explanations. Denial of HIV science, in this formulation, “is a buffering mechanism that gives a person time to adjust before facing the threat” (Kalichman, 2014: 18). This interpretation has been criticized for representing alternative beliefs as an individual or collective pathology or as the result of a deficit of knowledge (Kaler, 2009). Framing alternative beliefs as the result of “crippled epistemologies” (Hardin, 2002) hardly indicates that there may be rational reasons for such beliefs to have formed. Furthermore, by interpreting skepticism about scientific claims as conspiracy beliefs, some studies unintentionally obscure the extent to which many individuals express doubts about HIV science as agnostics rather than as committed conspiracy theorists. Categorizing alternative beliefs primarily as conspiracy theories excludes beliefs situated along the spectrum between full trust and complete mistrust, including skepticism and doubt.

Another interpretation of alternative beliefs suggests that they function as a “cultural immune system” (Bangerter and Eicher, 2013), providing a rational outlet for “laypersons to symbolize, and so make sense of, the material, psychological, and social threat that an infectious outbreak constitutes” (Bangerter, 2014: 2). Drawing on social representations theory (Moscovici, 1984), which highlights how “socially shared beliefs or representations serve the ideological needs of particular groups” (Bangerter and Eicher, 2013: 102), alternative beliefs are seen as lay responses to the threat posed by a disease outbreak (Falade, 2014; Mayor et al., 2013). Part of this response can directly blame at specific out-groups or elites (Joffe and Haarhoff, 2002; Washer and Joffe, 2006). In developing these beliefs, individuals are attempting to “orientate themselves and master the material and social world they live in” (Sammut and Howarth, 2014: 1799). This framework usefully draws attention to the broader significance of disease events for a particular group. However, this framework echoes the conceptualization of alternative beliefs as conspiracy theories by viewing these beliefs primarily as symbols of something else. In doing so, it may shift analytic focus away from more substantive concerns, such as perceived disjunctures between scientific facts and lay observations.

A final interpretation views alternative beliefs as “counter-narratives,” tools to challenge power “through the articulation of oppositional ideas about dominant scientific knowledge” (Mackenzie, 2011: 492). Such tools are necessary to enable marginalized people to push back against official narratives (Farmer, 1992). They reflect the manner in which historical experience is “embodied,” meaning “the way in which individual and collective histories are transcribed into individual and collective bodies” (Fassin, 2007: 65). In South Africa, this directs attention towards experiences of colonial abuse and apartheid (Fassin, 2007), the influence of former President Thabo Mbeki’s AIDS denialism (Geffen, 2010; Nattrass, 2012), the particular anxieties and insecurities born of economic and social globalization (Niehaus and Jonsson, 2005; Sanders and West, 2003), and daily experiences of discrimination and marginalization (Fassin, 2007; Fassin and Schneider, 2003). Although these explanations emphasize past contextual factors—such as previous experiences of marginalization—that shape current perceptions of trust in official narratives, they often fall short of identifying exactly how past experiences continue to account for distrust of scientific orthodoxy and the prevalence of alternative beliefs about HIV and AIDS. A similar weakness accompanies explanations for alternative beliefs as “responses to a nascent modernity”; in such analyses, it becomes difficult to identify “the different things that might be resisted, or commented upon” (Leach and Fairhead, 2007: 34). As time elapses since the end of the apartheid era and Mbeki’s presidency, assumptions about the current roots of distrust about HIV and AIDS science in South Africa should be questioned and, if necessary, updated (Dickinson, 2014).

In short, all three existing interpretations enact alternative beliefs as buffering mechanisms, used by individuals to create space between their reality and the threat of disease. Alternative beliefs, in these formulations, symbolize the need to neutralize the threat of disease by positing vast conspiracies, to externalize the threat to individual or collective identities by blaming others, or to contest official explanations of the threat by drawing on experiences of marginalization. These reinforce other scholars’ suggestion that with regard to explanations for infectious diseases, “a limited set of explanatory patterns exist and that these explanatory patterns serve in large part to symbolically make sense of disease outbreaks” (Bangerter and Eicher, 2013: 103). While these symbolic tendencies are established in previous studies of lay explanations for infectious disease (Joffe and Bettega, 2003; Mackenzie, 2011) and can be discerned in some data from this study, this article demonstrates that an important additional explanatory pattern exists that focuses attention on how individuals come to trust scientific claims. An ongoing trend in public understanding of science studies highlights the importance of public trust in science in mediating people’s beliefs and behaviors in relation to health issues, including vaccination (Falade, 2014; Larson and Heymann, 2010; Liao and Fielding, 2014; Siegrist and Zingg, 2014), participation in clinical trials (DeMauro et al., 2014), medication adherence (Cuffee et al., 2013), and engagement and retention in care (Graham et al., 2010). This focus illustrates the growing recognition that “members of the public are not passive recipients of information, but are engaged in active sensemaking, and trust is an important component of this sensemaking process” (Bangerter, 2014: 3). Guided by an emphasis on trust, a central question in the study of alternative beliefs then becomes, “What processes are individuals undertaking to evaluate the trustworthiness of various official claims about HIV and AIDS?” This study draws on the notion of a “street-level epistemology of trust,” referring to “the knowledge—good or bad—that a person develops through ordinary life experiences” (Hardin, 2004: 114) to account for individuals’ trust or mistrust of official claims versus alternative explanations about HIV and AIDS. Hardin (1992) focuses attention on “the ways the individual comes to know or believe relevant things, such as how trustworthy another person is” (pp. 154–155) by drawing on their own empirical sources of knowledge. Although there is an established tradition highlighting the lay empirical sources used to inform perceptions of who and what is trustworthy in relation to scientific claims (Irwin and Wynne, 1996; Wynne, 1992), to date, this tradition has rarely focused on beliefs about HIV and AIDS. This study draws attention to the utility of this conceptualization for studies of alternative explanations about HIV and AIDS, highlighting how respondents root their questions, doubts, and skepticism toward official claims about HIV in their own observations and experiences.

2. The study

Setting and sample

South Africa has the largest proportional population of people living with HIV, with national antenatal prevalence reaching roughly 30% (United Nations General Assembly Special Session (UNGASS), 2012). Khayelitsha township, where this research was undertaken, is approximately 30 km from Cape Town and has a population of 406,779 (in 2005). Over 95% of its inhabitants identify as African, and 96.8% speak Xhosa as their first language. Khayelitsha remains socio-economically marginalized; approximately 70% of its residents still live in informal houses, and over 50% of residents are unemployed.

This qualitative study is nested within a larger project, the Cape Area Panel Study (CAPS) of young adults living in Cape Town. In 2009, questions about alternative beliefs were included in the fifth wave of the CAPS (n = 2905). The methods used to draw the probability sample of the fifth wave of the CAPS are detailed in Grebe and Nattrass (2012). All CAPS respondents gave permission to be contacted for follow-up research, and in 2010, participants were contacted by phone and the purposes of the qualitative study outlined. A total of 10 focus group discussions (FGDs) with African respondents (n = 47), 5 with men and 5 with women, were conducted. Focus groups were restricted to African CAPS respondents both because they were more likely to endorse alternative beliefs than other demographic groups and because the African population in South Africa has the highest HIV prevalence, making obstacles to reaching this group, such as distrust of HIV science, of particular concern. Focus groups were selected to provide a more natural setting to observe discussions between participants (Kitzinger, 1994).

To capture the diversity of perspectives among the study population, sampling was purposive, based on a modified maximum variation sampling method (Patton, 1990: 172), and informed by respondents’ answers to four questions from the CAPS survey, using a 6-point Likert scale ranging from “strongly agree” to “strongly disagree,” with an additional option of “don’t know”:

HIV was deliberately created by humans.

There is a cure for AIDS, but it is being kept a secret from some people.

AIDS was created by scientists in America.

AIDS was invented to kill Black people.

Based on their answers, respondents were grouped into one of three different categories: respondents who answered “strongly agree” or “agree” to all of these questions were categorized as “endorsers”; respondents who answered “strongly disagree” or “disagree” to all the questions were labeled “non-endorsers”; and people who answered “neither agree nor disagree” were categorized as “uncertain” (Table 1).

Table 1.

Focus group respondents by category.

	Male (n)	Female (n)	Total (n)
Endorsers	8	5	13
Non-endorsers	8	17	25
Uncertain	9	0	9
Total	25	22	47

Four different types of focus groups were conducted. In order to compare findings across focus groups comprising individuals with similar views, the first three were composed exclusively of individuals from the three categories discussed above—(1) endorser, (2) non-endorser, and (3) uncertain. To ascertain the nature of discussions between people with a mixture of viewpoints, a fourth type of focus group included a blend of endorser and non-endorser participants and was called “mixed.” All were conducted in Xhosa by a trained female or male research assistant from the University of Cape Town and lasted 1.5–2 hours. They were semi-structured and explored beliefs about the credibility of scientific information about HIV and AIDS, as well as specific beliefs about the origins, spread, and treatment of HIV and AIDS.

Socio-demographic characteristics of participants are presented in Table 2. Participants were all Africans from South Africa, with roughly equal numbers of men and women. The mean age was 24 years, and the mean monthly income was approximately 3800 ZAR, equivalent to US$514 in 2010. Over a quarter of respondents belonged to households where there was not enough to eat on some days, and only a fifth of respondents (21.28%) reported their financial situation was “comfortable.” Over half of the participants had some high school education, and slightly over one-third had completed high school at the time of data collection; 42.55% reported being employed.

Table 2.

Socio-demographic characteristics of focus group participants (n = 47).

Characteristic		n
Age (years)
Range	20–29	47
Mean	24.26	47
Monthly income (ZAR)
Mean	3827.78	18
Don’t know, refused to answer		29
	Percentage
Sex
Male	53.19	25
Female	46.81	22
Ethnicity
African	100	47
Highest education
Some high school	53.19	25
Completed high school	36.17	17
Post-secondary education/training	10.64	5
Employment status
Employed	42.55	20
Days where there was not enough to eat in household
0	68.09	32
1–5	17.02	8
More than 5	10.64	5
Don’t know	4.26	2
Household financial situation
Very comfortable	0	0
Comfortable	21.28	10
Getting by	36.17	17
Poor	19.15	9
Very poor	23.4	11
Refused/don’t know	0	0

All participants were provided free transportation and lunch and received a 50 rand voucher for a local food store, the community-established standard for research participation. All participants completed a consent form indicating that they understood the study and agreed to be recorded. Ethical approval for this research was obtained from the University of Cape Town and the London School of Economics and Political Science.

Analysis

FGDs were transcribed verbatim and translated into English. A random sample of five transcripts were back-translated to verify the accuracy of translation. Anonymity was preserved by assigning a number to each participant at the beginning of each discussion and asking each participant to refer to themselves by that number throughout. Analysis was guided by the inductive principles of grounded theory (Strauss and Corbin, 1990) in order to generate codes directly in response to the statements and meanings of respondents “without any particular commitment to specific kinds of data, lines of research, or theoretical interests” (Strauss, 1987). In keeping with this methodology, data analysis was iterative. All transcripts were entered into qualitative analysis software (NVivo 10). After the first few transcripts had been analyzed using open-coding (i.e. identification and categorization of recurring patterns), emerging themes were presented to both focus group facilitators to compare their interpretations and impressions of data (Denzin and Lincoln, 1998). Following this, the coding tree was refined. Transcripts were then re-analyzed using axial coding (i.e. re-examination of categories to see how they are linked; Strauss and Corbin, 1990). In doing so, three dominant themes emerged from the data. The validity and reliability of the study results were enhanced by the employment of purposive sampling using a maximum variation strategy (Patton, 1990) and the discussion of preliminary findings with focus group facilitators.

3. Results

Respondents discussed various alternative beliefs about HIV and AIDS—focusing in particular on the origins of the virus or the existence of a cure. In their comments, respondents rearticulated concerns captured by the survey statements “HIV was deliberately created by humans,” “HIV was created by scientists in America,” “There is a cure for AIDS but it is being kept a secret from some people,” and “AIDS was invented to kill Black people.” Several themes emerged from discussions, including beliefs about the power of scientists and scientific developments, perspectives on attributions of blame, and perceived inconsistencies or disjunctures in scientific claims.

Science, poverty, and power

In discussing the origins of HIV, some respondents suggested scientists had experimented in laboratories, creating a new virus that was then spread to African people. In these explanations, scientists were framed as all-powerful, capable of interfering in people’s lives with both positive and negative results. As one respondent expressed,

I think it [HIV] is something that came from scientists—I mean this thing came from them. Because each and every thing that happens—it’s them. I mean the food we eat, everything that’s done—planting and so forth—it comes from? It comes from them. (N4 male endorser, 11 August 2010)

Another respondent spoke of an origin theory involving accidental cross-contamination in a laboratory: “What I’ve also heard is that blood samples were mixed up in a lab and then whatever combination happened and then this virus came into being …” (N3 female mixed, 8 July 2010). To explain the plausibility of these beliefs about scientific experimentation, respondents frequently referenced poverty and inequality. One man explained that while he believed scientists in the West had created HIV, it came to be in Africa through the same process that brought low-cost, high-yield foods:

[The mealie] was produced in the lab … And people who buy big and cheap food, you see this big cob of mealie and it’s cheap, it’s the Black person who’ll buy that because they are struggling. That’s why it comes to Black people. That’s why I shift this [HIV] to scientists. (N3 male endorser, 11 August 2010)

The role of scientists was also highlighted in speculation about the existence of a cure for HIV infection. Some respondents saw it as incomprehensible that a cure would not have been discovered yet, largely because of their observation that scientists had been working on a cure for so many years that their failure seemed implausible: “The way in which they are advanced in the sciences and yet they have still not found a cure for something that is killing people like this—is unbelievable” (N5 male uncertain, 27 August 2010). Others remarked that if ARVs could “slow the disease down,” it should only be a matter of dosage to cure HIV-positive individuals. Some respondents wondered why scientists had not yet acted on this seemingly obvious insight.

Respondents endorsed one of several possibilities to explain the lack of a cure. Some believed that a cure existed, but was being kept exclusively for people who could afford it. As with discussions about the origins of the virus, scientists were viewed as competent individuals who would not fail at developing a cure if they had genuinely tried. A female non-endorser stated that wealth was key to accessing a cure: “So I believe somewhere, somehow it [a cure] exists, but you just have to be rich in order to get access to that medicine” (N3 female non-endorse, 12 August 2010). Other respondents thought that a cure did not yet exist because scientists from Western countries did not have a sufficient incentive for pharmaceutical research, as one respondent insisted: “Only 5 or 10% of Europeans were infected” (N5 male uncertain, 27 August 2010). Declaring “AIDS was invented for business,” a male endorser offered a further explanation that a cure did not exist because it was far more lucrative to treat people forever than to eliminate demand for ARVs:

If you look now there are so many brilliant people in the world who can actually come up with that cure. Maybe some have already come with it. And you look at this ARVs thing—they say it slows it down so that it doesn’t have strength, but then if you look closely they can make something that can end it. And then you think that, if they have made that medicine and AIDS is eradicated—and then the one who came up with the idea—I mean people will go once per time to him and you will be cured and you will then not have to go back and buy again and then business goes down in that way. (N2 male mixed, 28 August 2010)

A variation of this explanation was that a cure had already been made available to babies and women, in the form of prevention of mother to child transmission (PMTCT). One male non-endorser posited that scientists were saving children from infection:

Which means that they [scientists] have sympathy for the baby—and that baby’s future is still bright. And you are grown up—so you die. I mean really they can make it—to ensure that the baby doesn’t get it. (N5 male mixed, 28 August 2010)

At the same time, this respondent suggested scientists were making a profit by exploiting the rest of the population:

And I mean if they can create things like that—you see now they are coming out with these things slowly—they start with children and then they come to the ladies. Which means that if they could combine all these ideas we could have a cure. But as he’s said—it’s business. (N5 male mixed, 28 August 2010)

As seen in the above quotations, some alternative beliefs about HIV and AIDS drew on accumulated observations from past and present experiences, particularly the intentions underpinning scientific developments. In this context, respondents framed Africans as vulnerable to the spread of disease through scientific experimentation and thought scientists viewed African lives as less valuable than European ones. Respondents also perceived unequal access to treatment as partially explained by privilege and prosperity. Beliefs about the man-made origin of the virus or the secret existence of a cure were therefore underpinned by respondents’ observations about power, privilege, and the lack of a satisfactory or conclusive explanation for the source of the disease or the absence of a cure.

The absence of blame and conspiracy

Despite the discussions about the role of scientists discussed above, few participants argued that HIV originated in a deliberate plot, even those who had previously endorsed alternative beliefs about HIV in the CAPS survey. Rather, the majority were far more likely to view the virus as an accidental byproduct of scientific experimentation. One respondent expressed optimism about scientists’ intentions:

I want to say their reasons were not to kill people, or maybe they were trying to cure, but they created this disease—HIV came about—but not that they had intentions to kill people. (Male mixed, 15 August 2010)

Others reinforced the view that the virus was accidentally created:

N4:

I mean I don’t think doctors would let you, if they know this thing can be spread, they’d let you be free for other people even though they know it can be spread.

N5:

I don’t think they knew it was a disease. That’s what I think. They were experimenting on whatever they were experimenting on. So I think so. (Female mixed, 21 August 2010)

As with discussions about the origins of HIV, few respondents endorsed the idea of maliciousness when it came to the presence or absence of a cure. The exchange below illustrates some respondents’ perceptions about the pragmatism of scientists:

N4:

And I don’t think that a person—who would know that they have a cure for HIV—that they would just sit down with it. Even though they know that a person who makes ARVs gets paid a lot. Would that person just sit there with that medicine and starve—knowing that it will help?

N3:

And that person can be a millionaire. (Female mixed, 21 August 2010)

In her observations about scientists’ financial incentives, this respondent underscored her trust in scientists as non-malevolent actors. The tendency to view scientists as non-malicious though pragmatic individuals continued even among individuals characterized as “endorsers,” who one might have expected would endorse a more malevolent conspiratorial view. Many endorsers expressed open-mindedness about the origins of HIV. For instance, one male endorser sought an explanation for how and why the virus has affected some people and not others:

And then what happens when a problem arises, as we are seated here and say something happens to this building and it happens to all of us and I get injured alone—or something happens to me—I will ask, “Why me alone?” I’ll have to establish why I was the only one injured—how was I seated? And investigate and see that “okay I was seated under the light and it struck me.” You see? So what is happening is that, since this affects Black people a lot, this HIV, why doesn’t it affect them [white people] a lot? That’s why—it’s natural to look for a source or whomever did something when something happens. (N3 male endorser, 11 August 2010)

Notable in this respondent’s comment was the absence of blame; he sought clarification about who could be infected with HIV without emphasizing the need to assign guilt. In short, throughout discussions, respondents discussed their uncertainty regarding the origin of the virus or the existence of a cure without positing a deliberate plot or pointing to a specific source of blame.

Observed disjunctures in information

As seen above, few respondents explained their beliefs about the origins of the virus or the existence of a cure by either attributing blame or positing a secret conspiracy of elites. Instead, for many respondents, their suspicions arose from disjunctures between their own observations and official scientific claims. The ability to prevent mother-to-child transmission was often cited as a source of significant confusion: some respondents felt there was a direct contradiction between official claims that HIV is transmitted via blood and the possibility of PMTCT, as one female endorser explained:

I am sick and my boyfriend is sick and then we make a child—you realize that those sperms are infected too and they make this baby—so how did that baby survive that? That’s what drives me crazy, I won’t lie. How did that baby survive yet we are both sick? And that baby was surrounded by that infected person’s blood? (N4 female mixed, 18 August 2010)

Others viewed PMTCT as either impossible or a sort of “cure in disguise,” reasoning that it could only be a matter of adjusting ARV dosage to treat adults. A non-endorser respondent voiced the belief that scientists’ ability to treat an unborn baby constituted a cure:

Because look, a person with AIDS can sleep with another person with AIDS and then the child that they give birth to will be born without it [HIV]—and that is why I am saying that they are still fooling us in that way. Because how can two people with AIDS have sex and make a baby that doesn’t have it? (N4 male mixed, 28 August 2010)

A further perceived contradiction between official statements and lay observations arose in discussions about President Jacob Zuma’s HIV status. Respondents highlighted ample evidence that Zuma had unprotected sex, citing several well-publicized out-of-wedlock affairs and pregnancies. They also drew on Zuma’s rape case, where he infamously said that rather than use a condom, he had showered after having sex with an HIV-positive woman in order to prevent infection (Evans and Wolmarans, 2006), and yet they observed that Zuma had subsequently announced the results of his public HIV test as negative (Timse, 2010). A female non-endorser noted, “This thing of brother JZ [Jacob Zuma] confuses me, because he is also the same one who said he showered. And thereafter he didn’t contract HIV!” (N2 female non-endorser, 12 August 2010). Another respondent raised the question of whether Zuma was hiding his positive status, suggesting, “Maybe Zuma already knows he is positive and he just wants to die. Maybe he is in that group of people already” (N1 female non-endorser, 12 August 2010).

Some respondents wondered whether Zuma’s controversial “shower” was in fact effective in preventing infection, and some respondents questioned whether a shower after sex could prevent them from infection. As one male endorser advised,

They should have explained that clearly as to what Zuma did to actually not get HIV from that girl … or even when you go shower—because that leaves us with a question mark. It’s not clear even now. (N3 male endorser, 11 August 2010)

In summary, many beliefs that could be considered “alternative” to official scientific claims were rooted in disjunctures between respondents’ own observations and certain scientific claims about HIV. Respondents held scientists’ abilities in high esteem, believing them technically capable of manufacturing a virus even as they were seen as having more benevolent intentions. The scientific assertion that a cure does not yet exist was also challenged by respondents’ overly optimistic assessments of scientists’ capacity to develop treatments for disease. Rather than interpret the absence of a cure as an indication of science’s failure to date, respondents read this as evidence of a hidden treatment. This belief was bolstered by conflation between a preventative method and a cure because of uncertainty about how exactly PMTCT works.

4. Discussion

This study explores alternative beliefs about HIV held by young African adults from Khayelitsha, South Africa. In their discussions of the origins of the virus and the existence of a cure, respondents highlighted the salience of several existing explanations for alternative beliefs, drawing on past and present experiences of marginalization and alluding to the ambivalent South African experience of scientific development and economic globalization. Although South Africans now live in a post-apartheid democratic country, many still experience and observe injustices that can fuel speculations about disparities in access to health care (Niehaus and Jonsson, 2005; Saethre and Stadler, 2013). In discussing the origins of the virus, respondents cited fears of untested scientific developments being passed along to the most economically vulnerable populations and of the tremendous yet opaque power of scientific research. The exact mechanism for transmission of disease was not specified in these discussions; rather, it was the very uncertainty of scientific development that inspired respondents’ doubts. In keeping with other South African studies, respondents ventured explanations about the forces that buffeted them about but remained invisible (Niehaus and Jonsson, 2005; Steinberg, 2008), echoing Ellis and Haar’s (2004) observation that there is “a profound ambiguity in the ideas people have about the true nature of the power that emanates from the West” (p. 46). On one hand, some respondents viewed scientists as the architects of the HIV virus in a laboratory experiment, while at the same time scientists were seen as being capable of, and committed to, developing a cure. These observations highlight the mixture of “antipathy and respect” that can characterize many people’s approaches to biomedicine (Leach and Fairhead, 2007: 31).

Importantly, although some respondents related their distrust of official facts about HIV to observed inequalities and injustices, these results also suggest that the experience of abuse and discrimination in South Africa has not created an a priori expectation of duplicity and conspiracy among most respondents. Perceptions of outright maliciousness were almost entirely absent, and contrary to previous studies in other settings (Joffe, 2011; Joffe and Bettega, 2003; Stadler, 2003), blame for the epidemic was rarely focused on specific out-groups such as foreigners. This may be because, as suggested by Mayor et al. (2013), blaming distant others for disease may be less common when a threat is both local and commonly present, as is currently the case with HIV in South Africa. Rather than blaming others, respondents evaluated the likelihood of malicious scientific conspiracy against their own experiences and observations and ended up defending the intentions of those in the scientific elite.

These results suggest that respondents foregrounded the trustworthiness of certain official claims about HIV and AIDS in the context of their own observable evidence (Fischer, 2005; Waters, 1997; Williams et al., 2009; Wynne, 2006). When evidence arising from these “street-level epistemologies of trust” (Hardin, 1992) clashed with scientific assertions, respondents were often uncertain about what was trustworthy. As was the case in Wynne’s (1992) study, where respondents “monitored and constructed evidence on this trustworthiness factor” (pp. 282–283) from an array of empirical observations, participants expressed sincere doubts about what was trustworthy when they observed a gap in logic between facts endorsed by biomedical HIV science and their own personal experiences. These findings are consistent with similar findings of disjunctures about HIV in other studies (Connors, 1995; Niehaus and Jonsson, 2005). For instance, a young woman queried, “… this guy who is believed to be suffering from AIDS: his girlfriend died of AIDS but he still looks healthy … Why is he not sick? This gives us doubts pertaining to AIDS; it confuses me” (Posel et al., 2007: 143). Steinberg’s (2008) protagonist Sizwe insisted,

And as for AIDS, the umlungus [white people] definitely have a cure. I know absolutely for sure that they do. And they are holding it back. The umlungus are so clever. It is not possible that they don’t have a cure. (p. 307)

Despite these instances, the focus on disjunctures in information has often occupied a peripheral position in studies of alternative beliefs about HIV and AIDS specifically and lay perceptions of disease in general (Niehaus and Jonsson, 2005; Posel et al., 2007). Far more often, alternative beliefs are primarily viewed as serving various psychological or symbolic functions. For instance, Kalichman (2014) attributes alternative beliefs to the denial that results as a “natural coping response to threatening and traumatic experiences,” suggesting that “individuals most vulnerable to misinformation spread by AIDS denialists may, therefore, be persons who are in the midst of coping with an HIV diagnosis” (p. 18). Explanations for lay beliefs about the origins of AIDS in Zambia attribute them to an “identity-protective process”; by blaming “the Other” for the origin and prevalence of HIV and AIDS, individuals seek to lessen their fear of stigma and of risk (Joffé, 1999; Joffe and Bettega, 2003). Lay perceptions of collectives such as healthcare providers and the government during the 2009 outbreak of influenza A H1N1 are similarly explained as serving “symbolic functions to help laypersons make sense of the uncertainty involved in a disease outbreak” (Wagner-Egger et al., 2011: 461).

Although it is important to consider the symbolic meaning of disease outbreaks for affected populations, this study focuses attention on the extent to which alternative beliefs reflect careful empirical observations about how politics, the economy, and public health are experienced in contemporary South Africa. The data suggest respondents are actively engaging with the logic and rationale of science by drawing on readily available sources of information. As a result, their questions or uncertainties stem less from their rejection of scientific claims or their search for buffering mechanisms than from their skeptical engagement with biomedical assertions (Larson and Heymann, 2010). These results build on existing research recognizing that “the public are not passive recipients of messages from public health officials, but have strong and valid opinions about health care and health issues” (Henrich and Holmes, 2011: 11). Rather than representing individual’s concerns about the trustworthiness of science as irrational or ignorant, this study echoes previous research to suggest that respondents’ decision making demonstrates “an attenuated and fluctuating process of weighing up different sources of information in light of their experience” (Sim et al., 2011: 509).

As further evidence that alternative beliefs among this population transcend particular psychological or social characteristics, a compelling finding of this study was that although the focus groups were stratified by type to compare different views and perspectives, there were greater similarities than differences across groups. For instance, while one might have expected respondents who strongly endorsed alternative beliefs about HIV on the CAPS survey to blame scientists or malicious government plots for the spread of HIV, this was not generally the case during discussions. Deliberate and malevolent conspiracy beliefs about the creation of HIV were raised far less often by endorser respondents than stories about HIV originating in some kind of imperfect scientific exploration by curious, albeit financially self-interested, scientists. That respondents who seemed strongly conspiratorial in the CAPS survey expressed more ambivalence and agnosticism in the focus groups reinforces the notion that doubts and mistrust within this population may be more dynamic than indicated by solely quantitative studies. This assertion is further supported by the fact that some alternative beliefs were raised by non-endorser respondents. This would not be the first time that different methods in studies on alternative beliefs have yielded contrasting results (Rodlach, 2006); such discrepancies are a reminder that methodological issues should be carefully considered when designing future studies to measure the prevalence of alternative beliefs.

By supporting the conceptualization of alternative beliefs as linked to individuals’ analyses of the trustworthiness of scientific claims rather than as entrenched conspiracy theories, these findings also carry important implications for interventions designed to build trust with target populations. If those who distrust the scientific consensus about HIV and AIDS are viewed as committed conspiracy theorists, unlikely to concede and uninterested in alternative viewpoints, there are few opportunities for policy makers and researchers to engage with them. If, however, individuals are considered to be expressing ambivalence and skepticism about HIV science rather than outright rejection, it raises the possibility that thoughtfully designed interventions may find traction.

A further significant finding is that alternative beliefs are rooted in common areas of confusion and distrust pertaining to the origins of HIV and the existence of a cure. This should encourage those designing interventions to respond to concerns about the trustworthiness of science as a central rather than peripheral priority. This recommendation builds on existing studies that urge interventions to address sensitive historical legacies among certain populations (Larson and Ghinai, 2011; Larson and Heymann, 2010; Nattrass, 2012), while pointing to the importance of recognizing alternative beliefs not only as symbols of broader concerns but also as tangible articulations of ongoing uncertainty and distrust (Leach and Fairhead, 2007). Respondents in this study sincerely and consistently requested further clarity on key aspects of HIV science that remained perplexing or incongruous. To treat these alternative beliefs as solely symbolic concerns, then, would be a disservice to this population and remove potential points of leverage to build trust and credibility with these individuals (Larson and Heymann, 2010; Sim et al., 2011).

The importance of responding to substantial queries about scientific facts transcends particular country contexts or disease outbreaks. In response to expressed concerns about the biased nature of government recommendations for pharmaceutical products in Canada, Henrich and Holmes (2011) recommend “providing information about the pharmaceutical industry: how it is regulated and the nature of the relationship between pharmaceutical companies and the government” (p. 11). A similar recommendation emerged in Sim et al.’s (2011) study of the decision-making process about H1N1 vaccine among Polish and Scottish pregnant women, in which “the information emanating from official sources did not address women’s predominant and detailed concerns about the pandemic, or the side-effects of the vaccine.” In response, the authors counsel “explicitly addressing uncertainty and acknowledging areas where there has been no opportunity to accumulate evidence” (p. 510).

The findings of this study should be interpreted in the context of several limitations. It is likely that since data were collected in 2010, alternative beliefs about HIV among this population have continued to evolve. Data presented in this study should be viewed, therefore, as a snapshot of alternative beliefs at one point in time, subject to reformulation as circumstances and experiences change. This study was also conducted with a small sample, and as such, these findings cannot be generalized to the wider population of South Africa. Nonetheless, the fact that respondents across all groups highlighted areas of ongoing confusion suggests that clarifying the origins of HIV and the existence of a cure is still a significant and fundamental point of interest for many in South Africa. Indeed, responding to these questions and doubts could be foundational to subsequent acceptance of other aspects of HIV science. These results serve as an example of how scientific facts are continually reviewed and reinterpreted with available “street-level” evidence.

Footnotes

Acknowledgements

I would like to thank the respondents of the study for their participation, Thobani Ncapayi and Ncedeka Mbune for their assistance with the research, as well as Nicoli Nattrass, Brendan Maughan-Brown, Eduard Grebe, Stephanie Nixon, Tony Barnett, Hakan Seckinelgin, Peter A. Newman, and Scott Naysmith for feedback and support throughout the project.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by the Canadian Institutes for Health Research.

Author biography

Clara Rubincam completed her PhD in Social Policy at the London School of Economics and Political Science. Since 2013, she has been a postdoctoral fellow in the Canadian HIV Vaccine Initiative Team in Social and Behavioral Research on HIV Vaccines at the University of Toronto, working primarily on the social acceptability of vaccines for specific populations.

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