amfAR, The Foundation for AIDS Research

Measuring Stigma in HIV/AIDS

Jeffrey Laurence, M.D.


October 10, 2008—Last month’s research update reviewed the recent efforts of amfAR grantees Drs. Robert Remien and Jennifer Sayles to understand the origins of stigma among people with HIV/AIDS and how it affects their lives. Such stigma has led to depression, limited participation in HIV testing, discouraged disclosure of HIV serostatus to sexual partners, and inhibited initiation of lifesaving HIV medications or adherence to such treatments. Writing in the September issue of AIDS and Behavior, Dr. Sayles and colleagues at UCLA extend this work to the design of a new method to assess stigma in light of advances in HIV therapy.

Common measures used to quantify both stigma and the impact of specific interventions on stigma were developed before the era of highly active antiretroviral treatment. As a result, they may not satisfactorily capture stigma and the disclosure concerns that arise in the context of HIV medication use and in healthcare settings. Nor have common measures of stigma been evaluated among people living with HIV as a chronic disease. Many of these measures were also developed and tested primarily among white men. To counter that imbalance, Sayles’s group sought direct input from HIV-positive women and men from a variety of ethnic and racial backgrounds.

Following interviews with 202 people living with HIV/AIDS, Sayles’s group produced a 28-item measure of “internalized” stigma—stigma as perceived and experienced by the subject. These 28 items could be grouped into four categories: stereotypes; disclosure concerns; social relationships; and self-acceptance issues. Participants described a wide range of ways that HIV-related stigma affected their lives, including, “People assume I slept around because I have HIV,” and “People think that you can’t be a good parent if you have HIV.” In terms of social relationships, participants said that “People treat me as less than human now that I have HIV.”

Although Dr. Sayles’s research is in the early stage of development, some interesting patterns have already emerged. In general, items addressing HIV as a chronic illness, disclosure concerns in the context of care and treatment, and perceptions or experiences of stigmatization by healthcare providers had the greatest impact in their respective categories. In terms of gender and race, higher internalized stigma was seen among heterosexuals compared to men who have sex with men, while the transgender population experienced the highest levels of stigma in relation to stereotyping and social relationships. African Americans reported higher stigma compared to whites for all measures except social relationships. Unique themes related to parenting also arose. The hope is that many investigators will take advantage of these standardized measures to explore stigma in HIV/AIDS, and seek ways to diminish or eliminate it.

Dr. Laurence is amfAR’s senior scientific consultant.