1) The role of knowledge about HIV and AIDS and fear surrounding it
Across all four countries, people were still afraid that HIV can be transmitted through ordinary, daily interactions with people living with HIV and AIDS. Even though the particulars varied in each setting, people are preoccupied with unlikely modes of transmission. Usually, the fear is that HIV could be transmitted by mosquitoes or through non-invasive contact with blood, sweat, diarrhea or other bodily fluids, but sometimes the “what if scenarios” were quite far-fetched. For example, in Ethiopia, there was a fear that raw chicken eggs could transmit the virus, if hens came upon and pecked at used condoms.
Fear of transmission leads directly to stigma such as the avoidance or isolation of persons living with HIV and AIDS. Sometimes even healthcare workers shared this fear of patients —even though they know how HIV is transmitted, they lacked confidence about how HIV is not transmitted.
Ogden and Nyblade believe that the fear of transmission from casual transmission, and the various “what if scenarios” are the result of 1) the lack of specific, in-depth information about HIV transmission, 2) fear-based public messaging, and 3) the evolving nature of knowledge about HIV and AIDS.
Even though people know that HIV is spread through bodily fluids, this is vague and leaves room for people to extend what they know about other infections to HIV. “Without a greater depth of knowledge about how HIV is, and is not, transmitted, and direct explanations from trustworthy sources as to why HIV cannot be transmitted in the same way as TB, diarrhoea, or malaria, doubt will remain that it can be,” write Ogden and Nyblade. “Given the consequences of contracting HIV, as long as even the slightest doubt remains about the possibility of transmission through everyday contact, the choice will be made to, where possible, avoid contact with people with HIV.”
This fear of HIV transmission is amplified when public health campaigns focus primarily on negative images of sick and dying people with HIV and AIDS, as well as by sensationalised media reports about risk-taking behaviour or infected persons purposefully exposing others.
Finally, since HIV disease is a relatively recent phenomenon and knowledge about it is continually evolving, people worry that the current information about transmission might be wrong. Media reports about rare routes of transmission invariably reinforce the view that `expert` information is wrong.
2) The role of values, norms, and moral judgment
The link between stigma and morality is an ancient one and is apparent in the original definition of the word, which meant a mark or physical sign of something bad. For example, in the Bible, stigma goes back as far as Genesis, when God “marked” Cain after he murdered his brother Abel. Most traditions have similar beliefs that illness is the result of some transgression or sin or social evil. This leads people to see the ill as deserving of their plight.
Departing somewhat from the ICRW stigma report, its easy to blame religion for stigma — but the tendency to stigmatise the ill is so universal, it likely predates the development of faith and value systems. Several studies have postulated that stigma evolved as a mechanism to avoid disease — triggering specific emotions such as disgust or fear when encountering the ill, forming negative attitudes about them and behaviours such as avoidance or discrimination (Park, Faulkner and Schaller; Kurzban & Leary; Neuberg, Smith and Asher). Stigmatisation has been documented in non-human primates as well. For example, Jane Goodall observed that chimpanzees avoided other chimpanzees who had lost the use of some of their limbs as the result of polio.
“Whatever its roots, the tendency to associate illness with moral impropriety is a central contributing factor to HIV and AIDS-related stigma,” write Ogden and Nyblade. “This stigma is exacerbated by the seriousness of the illness, its mysterious nature, and its association with behaviours that are either illegal or socially sensitive (e.g., sex, prostitution, and drug use). Also relevant is the perception that HIV infection is the product of personal choice: that one chooses to engage in “bad” behaviours that put one at risk and so it is “one’s own fault” if HIV infection ensues.”
In addition, there was a tendency across contexts to create a continuum between guilt and innocence related to “how” someone got infected. On the innocent side of the continuum are children, followed by health workers infected by treating their patients; while on the guilty end are the drug users and sex workers. Given that sex work and drug use are already socially unacceptable, the “guilty” infected are doubly stigmatised.
An HIV-infected woman could be near either end of the continuum, depending upon whether she is believed to have become infected while faithful to her husband (innocent) or otherwise (guilty). The role of gender was another key similarity across all contexts. “Women generally bear the strongest brunt of this type of stigma,” write Ogden and Nyblade. “The reason underlying this seems to be that women in all of these settings are expected to uphold the moral traditions of their societies. HIV is regarded as evidence that they have failed to fulfil this important social function.”