Background Despite improved biological understanding and lay education about HIV disease, a stigma persists for persons living with HIV (PLWH). Fears of contamination, assumptions of promiscuity, insurance concerns, and even condemnation by the medical profession are likely contributors to this psychological burden. Not surprisingly, social support has been inversely associated with depression, suicide, and disease outcomes. The purpose of this study is to determine the extent and characteristics of feelings of discrimination in a sample of PLWH.
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? " The anonymous responses were then analyzed with regard to offered demographic variables and classified into themes using grounded response theory. Two independent reviewers (A.R.H., D.B.) initially classified responses with disparities resolved by a third reviewer (M.J.L.).
Results Of the 123 surveys delivered, 102 (82.9%) were returned. Demographic information finds: mean age 40.6 6 9.1 (22-67); 83% men; 80% Caucasian, 15% African American, 3% Hispanic, and 1% Asian; 67% are men who have sex with men (MSM), 14% indicate high-risk heterosexual activity (HRH), 4 (4%) intravenous drug use, 2% report blood exposure, and 13% do not know their HIV risk factor; 50% have depression, and 28.4% have anxiety. Eighty-eight completed the discrimination item, with 35 (40%) answering affirmatively. Major themes to emerge (examples) include societal ("third-class citizen "), institutional ("the court systems don't understand "), ignorance ("only if people are uneducated "), medical ("nurses act weird "), interpersonal ("some are afraid to touch you "), and self-imposed feelings ("I feel like a leper "). Of the 53 negative responses, 15 (28%) suffer no discrimination because no one is aware of their disease. There were no significant correlations between demographics and feelings of discrimination.
Conclusions The data suggest that feelings of discrimination indeed persist but may actually be less than previously reported. Many who do not harbor such feelings attribute this to nondisclosure. Possible explanations of these findings are both improved societal acceptance and advances in HIV treatment. Further research is needed to better understand and eradicate discrimination against PLWH.
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