The stigma of HIV

HIV stigma is reinforced when it is linked to the fear of infection
African, Netherlands Antillean and Surinamese communities

The second stigma survey addresses the experiences of stigma in the African, Netherlands Antillean and Surinamese communities in the Netherlands. HIV positive people from this group have more problems with HIV stigmatisation than homosexual men.

HIV positive people experience a lot more trouble than everybody realised as a result of stigma. For African, Netherlands Antillean and Surinamese communities the results were more alarming and serious than for homosexual men. As previously, this survey was carried out by Maastricht University and Erasmus University Rotterdam and was commissioned by the Aids Fonds (AIDS Fund) in cooperation with the Hiv Vereniging Nederland (Dutch HIV Association). This was the first time that people with HIV were questioned directly about the stigma they experience. The report entitled 'HIV-related Stigma in the Netherlands' is also available in English online. In the first article (see Hivnieuws 117), I described the part of the report that concerned the 667 HIV positive people who were recruited by the Hiv Vereniging and by HIV counsellors. The second study in this report focussed on African, Netherlands Antillean and Surinamese communities in the Netherlands. This survey investigated the experiences of 42 HIV positive people from these communities and compared the answers with those from 52 HIV negative people from the same communities. It was soon revealed that heterosexual HIV positive people usually are more troubled with social stigma than are homosexual men.

Social stigma is a serious social condemnation of personal characteristics or convictions that go against the 'norms' of a certain culture. Social stigma of a certain group often leads to marginalisation — a process whereby people's social status is reduced. This can lead to exclusion from participation in (social) group processes and often results in financial poverty. It then becomes harder or altogether impossible for people to take part in activities or groups in which they would like to.

Qualitative research
The survey of homosexual men was quantitative (measuring; counting responses), aimed at the questionnaire. The second survey of the ethnic communities was qualitative (investigative, descriptive), aimed deeper at the content of the responses. That means that people were questioned more thoroughly and personal interviews took place with the two separate categories of participants in the study. The first group consisted of African, Netherlands Antillean and Surinamese HIV positive people (the HIV positive group), while the second group consisted of HIV negative participants from the same communities. In total, 43 HIV positive and 52 HIV negative people participated in these in-depth interviews.
The researchers also indicated that it was very difficult to persuade Netherlands Antillean women to be interviewed. Both Surinamese groups consisted of 47% men and 53% women. The surveyed group revealed that there were more highly educated Netherlands Antilleans and Africans than Surinamese people. What was remarkable was the great number of single people in all groups, the Netherlands Antilleans being the most at 90%. In comparison to the white, homosexual men, fewer people in these groups had a paying job. However, a number of Africans and Surinamese were still students. In this study, only in the Netherlands Antillean group were 60% of the HIV positive people homosexual.

Dividing up the questions
The HIV positive people were asked about their experiences with stigma, what were the consequences for them, and how they were trying to deal with it. They were also questioned as to how they thought stigma within their groups of origin could be decreased, and how they dealt with telling other people that they had HIV. The HIV negative people were asked about their personal opinions and feelings on HIV and people with HIV. They were asked how they thought about opinions and feelings about HIV and HIV positive people within their community and about the seriousness and infectiousness of HIV. And they were also asked about their level of knowledge of HIV, and how they thought the stigma within their communities could be decreased.

Taboos and fear of infection cause stigma to persist
Because the participants were thoroughly and personally questioned, the results were more meaningful. There is a strong taboo attached to HIV in these communities. In this regard, the fact that HIV is related to sex plays an important role; after all you usually get HIV through unsafe sexual contact. The study revealed that the degree of infectiousness of HIV assumed by the participants and the supposed seriousness of the infection strongly influences the HIV-related stigma within these communities. This also applies to the extent to which they think the person with HIV is, him- or herself, 'to blame' for the infection. Thus the stigma is reinforced by associating HIV with unconventional behaviour, such as promiscuity and homosexuality. These opinions are additionally enhanced by the taboos that occur in these communities anyway: taboos about talking about sex, gay sex and HIV. For the most part this is 'not done' in these communities. Silence as a result of a taboo, causes the taboo to persist and thus the stigma as well. And with it also, the individual suffering of the HIV positive people within these groups.

Openness is an even greater problem
Because HIV is a disease that, in most cases, can be concealed quite well, HIV positive people in this group are troubled by the question: when to tell whom that you have HIV. Although the patterns in these groups for doing or not doing this can change from person to person, most people have a number of pro- and con-exposure arguments, which they use as situations change. Openness about one's HIV status more often occurs when the person being spoken to is trusted, when support is needed in keeping the secret and when social or financial support is needed from one's own network. Naturally there are also other reasons: the beginning of a new romance or when needing to warn someone in order to limit risky sexual behaviour. Openness about HIV status is less likely when the person in question fears stigmatisation, or is embarrassed about the HIV infection (thus internalising the taboos of his or her own community). But also when someone has had bad experiences in the past about being open, or has witnessed the way people reacted to other HIV positive people. What also occurs more in these groups is that some HIV positive people keep their HIV status concealed so as to spare others from worrying about them. Or to prevent the others from being stigmatised because he or she knows somebody who is HIV positive. Another reason that often emerges is that the HIV positive person thinks that HIV status is a private matter that does not need to be shared with anyone else. Also in this approach confrontations can be avoided.

Manifestations of stigma
This study illustrated to an even greater degree how HIV stigma can undermine social relationships and support. Therefore stigma is a great influence on the well-being and the psychosocial functioning of HIV positive people.
The manifestation of stigma in the above mentioned communities were: evasive behaviour by friends and acquaintances, rejection, abandonment, physical distancing while being in one room with the same person, excessive protection measures (washing cups and disinfecting everything the HIV person has touched), gossiping, looking down upon the HIV positive person, disrespectfulness, negative and hurtful remarks, but also denial.
These phenomena occur in different social environments: within the family, within a circle of friends but also in the company of other HIV positive people and even while receiving health care!

Stigma negatively affects health
The second study also proved how stigma influences human relations in a real and very negative way. Stigma can cause the social networks of HIV positive people in these communities to crumble. Their circle of friends and acquaintances shrinks. It is more difficult for HIV positive people to find new relationships, partners and particularly romantic relationships. Furthermore, stigma causes a lot of internal pain, sadness, loneliness, anger and frustration. It also appears that stigma is internalised more vigorously in these groups. This is not surprising, in itself; it involves relatively small and close communities in the otherwise white Dutch society. This alone should enhance the solidarity with other group members. But the same can be said of the negative opinions that thrive in these communities. For example, for some HIV positive people in these communities it is a relief to take one pill a day containing all three HIV inhibitors since in this way they are able to disguise it as medicine for a headache or something else. Stigma in these communities also appears to negatively influence personal health since it has an adverse effect on therapy loyalty.

Adapt, don't attract attention
Finally, the research showed that HIV positive people try to deal with stigma in different ways. In most cases, the participants in the study did not try to change the social reality of the stigma. They preferred to attempt to 'adapt', to find their way within the circumstances in which they found themselves. The ways in which they tried to do this were to concentrate on other things or on other people as much as possible, blaming stigmatising remarks on the ignorance of others, choosing not to focus too much on one's own HIV status (or not identifying too much with it) and accepting that HIV-related stigma is part of having HIV. However, most HIV positive people chose to avoid stigmatising people and stigmatising situations, and associate with other HIV positive people.

Swiss Auxiliaries?
It is not only in the gay community that the fight against stigma must be high on the agenda. The researchers noted that prevention campaigns of the past might have had an unintentional stigmatising effect. For the above-mentioned groups, the problems are aggravated because everything having to do with sex is under heavier taboos than what is normal in the Netherlands. Both studies reveal that HIV stigma has strong and clear consequences for the self-respect and the mental-emotional well-being of HIV positive people. That is not beneficial for a normal life with HIV. Nor is it for prevention. In these groups it would be very helpful in the prevention of HIV when taboos can be discussed and when better information about sex, STDs and HIV can be provided (including information about things which do not cause HIV). And all of this should be maintained for a longer period of time. We think in doing this it is very important to familiarise these groups with the Swiss point of view concerning the relation between viral load and infectiousness. When people are more aware about the conditions whereby HIV is easily transmissible and the conditions whereby it is considerably less contagious (combination therapy, therapy loyalty and the absence of other STDs), then combination therapy can be used as a means to reduce stigma. After all, HIV people who are loyal to their therapy protect others because the medication drastically reduces infectiousness. This awareness is directly linked to reducing the old stigma, which unfortunately is still to a large degree present within these groups. The Hiv Vereniging and the Nederlandse Vereniging van Aidsbehandelaren (Dutch Association of Physicians in AIDS) can play an important role in accomplishing this, providing it is implemented carefully.


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