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Qualitative Health Research
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Continuities and Discontinuities in the Experiences of Felt and Enacted Stigma Among Women With HIV/AIDS

Helen-Maria Lekas

Center for the Psychosocial Study of Health and Illness, Mailman School of Public Health, Columbia University, New York, HL11{at}columbia.edu

Karolynn Siegel

Center for the Psychosocial Study of Health and Illness, Mailman School of Public Health, Columbia University, New York

Eric W. Schrimshaw

Center for the Psychosocial Study of Health and Illness, Mailman School of Public Health, Columbia University, New York

In the post-1996 era, the effectiveness of antiviral therapies (such as highly active antiretroviral therapy [HAART]), which transformed HIV/AIDS into a more manageable disease, raised expectations that the disease’s stigma would decrease. The authors compared focused-interview data from a pre-HAART (1994 to 1996) and a HAART-era (2000 to 2003) sample of African American, Puerto Rican, and White women living with HIV/AIDS to identify changes in stigma experiences and suggest reasons for continued stigmatization. In both eras, general stereotypes about HIV/AIDS, as well as gender- and race-related stereotypes about the disease, were identified. Internalizing any of these stereotypes was a necessary and sufficient condition for feeling stigmatized. Instances of enacted stigmatization were more frequent and intense in the pre-HAART era. Nevertheless, misinformation and irrational fears of contagion, which triggered stigmatizing behavior, persisted into the HAART era. This analysis revealed that although enacted stigmatization has decreased slightly, felt stigma remains a primary adaptational challenge facing women with HIV/AIDS.

Key Words: stereotype • felt stigma • enacted stigma • discrimination • gender • race • ethnicity • HIV/AIDS • stigma consciousness

Qualitative Health Research, Vol. 16, No. 9, 1165-1190 (2006)
DOI: 10.1177/1049732306292284


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