Background Despite improved biological understanding and lay education about HIV disease, persons living with HIV (PLWH) continue to perceive discrimination. Fears of contamination, assumptions of promiscuity, insurance concerns, and even condemnation by the medical profession are likely contributors. Nondisclosure is one coping mechanism but is not always practical and itself might be maladaptive. Nevertheless, efforts to decrease discrimination are appropriate, and strategies to do so might best be known by those discriminated against.
Methods A voluntary, IRB-approved questionnaire was offered to patients presenting to the University of Kentucky HIV clinic. In addition to demographic information, participants were asked, “Do you ever feel discriminated against? If so, how?” Then they were asked, “What do you recommend to help decrease discrimination?” The anonymous responses were then analyzed with regard to offered demographic variables and classified into themes using grounded response theory. Two independent reviewers (T.N.W., R.K.S.) initially classified responses, with disparities resolved by a third reviewer (A.R.H.).
Results Of the 100 surveys delivered, 73 were returned. Demographic information finds: mean age 39.3 ± 8.5 (23-69), 84% men, 76% homosexual or bisexual, 89% Caucasian, and 60% contracted HIV from male-to-male sex, but 23% do not know their HIV risk factor. Sixty-one completed the discrimination item, with 46% answering affirmatively. Nearly all of the respondants to the item regarding recommendations mentioned “education” (31/44). Other themes to emerge included increasing experience with or exposure to PLWH, discovery of a cure or a “miracle,” and several expressed avoidant strategies or otherwise little hope of decreasing discrimination (eg, “stay away from people” and “infect everyone”). Again, many of the negative respondants (11/33) indicated nondisclosure as the reason for escaping discrimination. There were no significant correlations between demographic variables and feelings of discrimination or proposed solutions.
Conclusions The data reaffirm that feelings of discrimination are indeed prevalent and that PLWH may not diclose their HIV status as a result. In this sample, the majority believe that widespread education about the disease may help attenuate the stigma. Possible explanations and areas for further research should be directed toward educating a possibly misinformed public about HIV and AIDS.
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