AIDSQuest: The HIV/AIDS Survey Library
HIV Research Domains: Topic L Stigma and Discrimination

Overview
One of the main challenges to the successful implementation of HIV programs is HIV-related stigma. In countries throughout the world, fear, ignorance, and misconceptions have resulted in stigmatization of people living with HIV or those associated with them. This negative response has resulted in people being unwilling to reveal their status, or to get tested for HIV. Inability to inform others may deprive infected persons of the support and care of their family, and the benefit of available information, support, counseling, and treatment services.

Despite the scope and severity of the problem, there is little consensus on how to mitigate stigma and discrimination. Nor is it clear how best to measure stigma in surveys. It is a difficult and abstract concept, and measures for stigma are still under development.

Understanding the distinction between perceived and enacted stigma is important. Perceived stigma refers to negative attitudes toward a person living with HIV. Enacted stigma refers to discriminatory behaviors because of HIV status. Main causes of stigma may include fear of contagion or death, as well as negative views toward certain behaviors, e.g., having sex with multiple partners. Measurement should address both issues and interventions to address each may be different. 

Internalized stigma is another important concept. When stigma is internalized by people living with HIV, they can take on and believe negative views directed toward people living with HIV in society. This may result in depression or isolation from society.

Experiences of stigma can be different for men and women. Women are often blamed for the deaths of their husbands from AIDS, for example. Surveys that aim to understand stigma may wish to take gender-specific issues into account.

As with other types of questions, it is important to keep comparability in mind when designing a survey. This is especially true if you are going to ask similar questions within the same survey, collect more than one round of data (e.g., pre-and post-tests), or if you will want to compare your results to other studies. Stigma questions can be asked in different ways. For example:

"Nurses with HIV should not be allowed to work in hospitals" and "I would not be treated by a nurse who had HIV."

While both statements attempt to measure stigma via attitudes about people living with HIV, the meaning of each statement is different, and responses to each could not be directly compared.

A detailed report describing various strategies to measure stigma and discrimination has been included as appendix C.

Examples of questions relating to stigma have been selected from the following questionnaires:

1. Stigma and discrimination

• Horizons—Refining Interventions to Improve the well-being of AIDS-affected Children
• MEASURE DHS+—AIDS Module
• UNAIDS/MEASURE Evaluation—HIV/AIDS Prevention Indicator Survey
• FHI—Behavioral Surveillance Surveys
• Herek et al.—Public Reaction to AIDS
• Berger—HIV Stigma Scale
• ICRW—Tanzania Stigma Indicator and Community Endline: Individual Questionnaire
• Horizons—Reducing HIV/AIDS-related Stigma and Discrimination in the Healthcare Setting in Vietnam: Hospital Worker Survey
• Horizons—Reducing HIV/AIDS-related Stigma and Discrimination in the Healthcare Setting in Vietnam: PLHA Survey
• Horizons Program—Improving Hospital Environment for HIV Clients in India