Saturday, 14 January 2006 - 8:30 AM

Understanding HIV Stigma and Disclosure among Older Adults Living with HIV/AIDS

Charles A. Emlet, PhD, University of Washington, Tacoma.

Background: This mixed-methods study interviewed 25 older adults 50 years and older living with HIV/AIDS in Western Washington. The study was based on the theoretical work of Goffman (1963), and expanded by Herek and colleagues (1998) to define HIV stigma as prejudice, discounting, discrediting and discrimination that are directed at people perceived to have HIV or AIDS. Stigma has been recognized as a phenomenon that can be felt (internal) or enacted (external). All participants provided sociodemographic information as well as completing the CES-D, a 40 item HIV stigma scale and completing a semi-structured interview. Results: Subject ranged in age from 50-72 years (M=56.12, SD 5.74). Sixty percent of the subjects were White, 36% African American and 4% Non-White Hispanic. Over half (52%) lived alone with 28% living with their spouse/partner. Subjects were evenly divided between those exposed to HIV through male to male sex (36%) and heterosexual exposure (36%), while 16% identified injection drug use as the means of exposure. Nearly three quarters (72%) were retired either from age or disability and 76% have been diagnosed with AIDS. Sixty percent have received Medicaid in the past 12 months. Thirty-six percent of those interviewed had CES-D scores indicating depressive symptoms. Depression was significantly correlated with overall stigma (r = .645 p<.01), while scores on the negative self image subscale (r = .758, p<.01) and personalized stigma scale (r = .634, p<.01) were also significant. While stigma scores (both overall and subscores) did not differ by gender, or HIV exposure, African Americans had significantly higher scores than their White counterparts on the overall stigma score [t(22) = -2.92, p = .008], the personalized stigma scale [t(22) = -2.65, p = .015], the disclosure scale [t(22) - -2.21, p = .038], the negative self-image scale [t(22) = -3.25, p = .004], and public attitude scale [t(22) = -2.61, p = .016]. Overall the highest (most pronounced) aspect of stigma for individuals in this study was associated with disclosure followed by public attitudes. Qualitative data, supports the varied experiences of these older persons related to disclosure, negative self attitudes and personalized stigma. For example, Eric (age 72) stated “you don't want people to know you have this dreaded disease” while Wayne (age 59) simply stated “I feel I'm radioactive”. The qualitative experience also reinforces that stigma is more complex that simply internal (felt) or external (enacted). The method of disclosing HIV status ranged from intentional to accidental to a violation of confidentiality. Discussion: Older adults with HIV/AIDS experience high levels of stigma from others in the community as well as discriminatory practices related to disclosure and confidentiality. Subgroups, such as older, HIV-infected African Americans may be at greater risk for discriminatory practices. Aging as well as HIV service providers need to recognize the potential harm that continues to exist from HIV stigma and develop methods for individual interventions as well as broader societal change.


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