Understanding HIV-Related Stigma: Social and Psychological Processes
As we enter the fourth decade of the HIV epidemic, focus is increasingly being placed on the social context of HIV. More and more attention is being paid to what it means to live with HIV and to the impact of an HIV infection for people living with HIV (PLWH), their families, and their communities. An important issue in this context, and one that contributes significantly to the hidden burden of HIV, is stigma . This dissertation reports on the social and psychological processes involved in the production and experience of HIV-related stigma. It explores public and self stigma and follows recent trends in stigma research by focusing predominantly, but not exclusively, on the perspective of PLWH. The first part of this dissertation describes the results of comprehensive qualitative research conducted with African, Dutch Antillean, and Surinamese diaspora in the Netherlands. This section focuses on both the perceiver and the target of stigma by following the process
of stigmatization from the perceiver’s beliefs regarding HIV and PLWH to the subsequent manifestations of stigma, the consequences for the target, and how PLWH cope with stigma and determine whether or not to disclose to others. The second part of this dissertation explores some of the consequences of HIV-related stigma in more detail and expands the study population and sample to include all PLWH living in the Netherlands. The findings reported in this section are, in contrast to the first part of this dissertation, quantitative in nature.
1. There are more similarities than differences across contexts in the causes of stigma, the forms stigma takes, and the consequences of stigma. (this dissertation)
2. Interventions that support PLWH and train them in how to best disclose their status and cope with potential negative reactions must precede interventions that utilize PLWH as public spokesmen to break taboos and reduce stigma. (this dissertation)
3. The psychological impact of HIV-related stigma varies depending on the manifestation and the setting in which that manifestation occurs. (this dissertation)
4. Having a visible stigma is more detrimental than having a concealable stigma. (this dissertation).
5. The careful measurement, generalizable samples, experimental control, and statistical tools of good quantitative studies are precious assets. When they are combined with the up-close, deep, credible understanding of complex real-world contexts that characterize good qualitative studies, we have a very powerful mix. (Matthew Miles & Michael Huberman)
6. When research is informed only by our epistemological foundations and practice only by our personal experience, our work is limited and lacks meaning. For the sake of both effectiveness and efficiency, dialogue and cooperation between theoria and praxis is imperative.
7. The use of the term ‘ethnic minority’ has tended to assume that the dominant group within the state does not possess an ‘ethnicity’. (Floya Anthias)
8. Science, no matter how objective it may seem, is a subjective and inherently political endeavour.
9. We become just by performing just action, temperate by performing temperate actions, brave by performing brave action. (Aristotle)
10. Management is delegation. (Peter Schroder)
11. If God is really punishing people with sickness for their sins, don’t you think the perpetrators of war, terrorism, and nuclear destruction would at least get herpes? (Episcopal Bishop Paul Moore)
