Stigma Measures

Enacted stigma most often encompasses discrimination that takes place at an institution (e.g., being refused healthcare) and interpersonal discrimination (e.g., no longer being invited to community gatherings). Enacted stigma can be measured by survey items that address the following indicator:

Percent of people who personally know someone who has experienced/people living with HIV who have experienced AIDS-related discrimination.

Discrimination is usually measured by asking respondents to report observed stigma, rather than a respondent's own discriminatory behaviors, in order to minimize under-reporting. To reduce the possibility that respondents might refer to the same incidents of enacted stigma reported by the media or well-known throughout a community, recommended items ask about whether the respondent personally knows anyone who has experienced AIDS-related discrimination. Items measuring observed discrimination are recommended to utilize relatively long time horizons (most commonly 12 months), since observable acts of discrimination may not occur with great frequency.

When measuring discrimination, it can be difficult to determine whether reported discriminatory behaviors result from broad institutional factors (such as laws or company policies) or from personal attitudes and choices on the part of individuals. For example, a study on AIDS-related discrimination in Beijing, China, found that hospital and government policies around provision of care and testing were the major source of discriminatory behaviors, even though reported acts of discrimination were at the level of individual interactions between people living with HIV and health workers (Yang et al. 2005). In addition to conducting surveys that measure the prevalence of discrimination in a community, qualitative methods are useful for investigating the bases and origins of discrimination.

Surveys of the general public can use the following recommended items for measuring enacted stigma:

Do you personally know someone who has had the following happen to him/her in the past 12 months because of having HIV?

• Excluded from a social gathering.
• Abandoned by spouse/partner.
• Verbally abused or teased.
• Been physically assaulted.
• Been fired from work.
• Had property taken away.
• Been denied health services.

Similarly, for research in health care settings, there are a number of survey items that can be used to measure discrimination of people living with HIV. Two types of questions for health care workers are common: observing colleagues treating patients with HIV differently than other patients, and personally having treated patients with HIV differently. Because of concerns about social desirability bias and reporting personal discrimination, it is recommended to ask about having observed discrimination among colleagues. Examples of items measuring discrimination in health care settings include:

In the past 12 months, have you seen or observed the following happen in this health facility because a client was known to have or was suspected of having HIV?

• Receiving less care/attention than other patients.
• Using latex gloves for performing noninvasive exams on clients suspected of having HIV.
• Because a patient is HIV-positive, a senior health care provider assigned the client to a junior provider.
• Health care providers gossiping about a client’s HIV status.

Finally, for research with people living with HIV, personal experiences of enacted stigma can be measured using the following recommended survey items:

In the last 12 months, have you [fill in from list below] because of your HIV status?

• Been excluded from a social gathering.
• Been abandoned by your spouse/partner.
• Been verbally abused or teased.
• Been physically assaulted.
• Been fired from your work.
• Had property taken away.
• Been denied health services.

Yang, Y. et al. 2005. “Institutional and structural forms of HIV-related discrimination in health care: A study set in Beijing,” AIDS Care 17(Suppl. 2): S129–S140.

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Domains of stigma and discrimination

Measures for inappropriate fear of contagion and resulting avoidance of people living with HIV

Measures for negative judgments of people living with HIV

Measures for enacted stigma (discrimination)

Measures for compounded/layered stigma

Measures for other aspects of stigma

How to use the survey items

Methodological issues for data collection

An example: Developing a stigma index in India

Example of a survey module

Additional survey items

HIV Stigma Scale

Working Report Measuring HIV Stigma: Results of a Field Test in Tanzania

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