|Stigma and discrimination are of concern to AIDS programmes for two main reasons. First, because they can make life unbearable for those who live with the disease. And secondly, because they affect prevention and care efforts. People who have been exposed to HIV through their behaviour or that of their partner may be unwilling to be tested or to change their behaviour in any way for fear of being suspected of being HIV-infected. If they are indeed infected, they may continue to spread the virus and will not be able to access adequate care. There are many ways that stigma can undermine prevention and care efforts. An HIV-positive woman may know that breastfeeding carries a risk of transmitting the virus to her infant, for example. But she may refuse alternative feeding methods (even when they are provided at no cost) because bottle feeding will brand her as HIV-infected and carry the risk that she will be thrown out of the family. Where stigma is high, people may avoid an HIV test that could provide an entry point for necessary care and support. Active discrimination has consequences for prevention, too. If a person is fired from their job because they are HIV-infected, they may have to resort to survival strategies such as selling sex, which further fuel the epidemic.
Programmes aim to combat active discrimination by changing laws to support those living with HIV and AIDS and by ensuring those laws are enforced. They seek to change attitudes towards infected people and their families. More supportive attitudes should translate into more supportive behaviour, transforming a hostile world into one that is compassionate and constructive. They seek to break the silence surrounding the disease, partly by involving people living with HIV and their communities in an active response. More open discussion, it is hoped, will reduce the fears and misconceptions that reinforce high-risk behaviour.
|Stigma and discrimination, but especially the former, are among the most difficult aspects of the epidemic to quantify. It is perhaps for this reason that, while many prevention and care programmes have the reduction of stigma and the fostering of more supportive attitudes as a stated objective, virtually none has developed a reliable way of measuring this most intangible of phenomena. In the first place, no clear definitions exist of stigma or the qualities that characterise it, and if something cannot be clearly defined, then it cannot be accurately measured.
While some stigmatising attitudes and discriminatory practices are all too obvious, others remain largely hidden. There is no clear relationship between attitudes and behaviour in this context. What people actually do in the face of something as frightening as AIDS may well differ from what they say they would do, and the discrepancy seems to run in different directions. Some studies have found, for example, that people expressing very negative attitudes to those infected with HIV actually provide supportive care for an HIV-infected relative in their own home. On the other hand, some people who deny any negative attitudes towards people with HIV may actively discriminate against them in specific settings, such as the provision of health care.
Interventions designed to reduce discriminatory attitudes may have a more rapid and/or profound effect on reported attitudes than on the embedded attitudes that drive an individual's behaviour. Decades of human rights campaigning in the United States have, for instance, greatly reduced the proportion of people who openly admit to being racially prejudiced. Whether this change in stated attitudes is reflected in a similarly large reduction in active discrimination is open to doubt.
To complicate matters still further, active discrimination is sometimes difficult to discern. It can take highly visible forms such as being fired from a job. But it can also make itself felt in the failure to provide services available to other members of society, or even the absence of compassion and supportive advice from church or community leaders.
It is difficult to collect information about behaviour towards those with HIV. Partly because of stigma itself, the HIV status of people who are in fact infected is rarely openly acknowledged, even within their own families. So most questions that attempt to measure stigma focus on hypothetical situations, such as the willingness to care for a relative with AIDS, or beliefs about whether people with HIV should be permitted to continue working with others. It is not clear to what extent hypothetical willingness to care for a sick family member is matched in practice, or, indeed, to what extent it is a useful indicator of social stigma. Other hypothetical questions such as a willingness to be tested for HIV have been shown to be very poor predictors of actual behaviour, possibly precisely because of the magnitude of social stigma. However, for want of anything better, hypothetical questions about people's attitudes are likely to remain central to attempts to track changes in negative attitudes towards people with HIV.
Measures of discrimination have tended to be of the yes/no variety. "Does legislation exist to protect against..." In some measures, there is also an attempt to judge whether or not the legislation is enforced. This may be useful in identifying important gaps and areas for programme effort; it is of limited use, however, in the regular monitoring and evaluation of national AIDS programmes. Composite indicators of these yes/no questions are nearly impossible to interpret. A gain in passing legislation in one area may be counteracted by a backsliding in enforcement in another. It is noted that the AIDS Programme Effort Index (API) will partly measure the extent to which the legal system protects the human rights of HIV-infected persons.