Stigma Measures

Fear of HIV transmission through casual (and, in reality, not contagious) contact and refusal to interact with people living with HIV constitute the principal dimension of stigma that quantitative studies have measured. Survey items gauging this dimension of stigma measure the following two indicators:

1. Percent of a population expressing fear of contracting HIV from casual/non-invasive contact with people living with HIV.
2. Percent of a population who wish to avoid casual contact with people living with HIV due to fear of contagion.

Typical items related to the first indicator measure the survey respondent’s fear of being infected with HIV if they, for example, touch people living with HIV, or share utensils with them. Items used to measure the second indicator gauge respondents’ desires to avoid people living with HIV or keep distance between themselves because of fear of contagion, such as being unwilling to hug or buy food from someone with HIV. Recommended items for measuring these two indicators in surveys of the general public are as follows:

Please tell me if you are afraid, not afraid, or not sure of becoming infected with HIV if you OR You could become infected with HIV if you:

• Hug a person with HIV.
• Share a drinking glass with a person with HIV.
• Work next to a person with HIV.
• Care for a person with HIV.

Would you buy fresh vegetables from a shopkeeper or vendor if you knew that this person had the AIDS virus?
Would you rather not touch someone with HIV because you are scared of infection?

In research specific to the healthcare setting, recommended questions on inappropriate fears of contagion are as follows:

In response to the following situations, please indicate if you have, do not have, or do not know if you have fear of HIV transmission:

• Taking the blood pressure of a person with HIV.
• Changing the bed linens of a person with HIV.
• Changing the clothes of a person with HIV.

In some situations, a research goal may be to understand the prevalence of reasonable fears of HIV transmission among health workers as compared to inappropriate fears of contagion through non-invasive contact. In these cases, questions may also be asked about healthcare workers’ fears of HIV transmission during invasive procedures or procedures that put health workers at risk of needle sticks.

Among people living with HIV, items can be used to determine their personal perceptions of inappropriate fears of contagion among the people they interact with. Recommended measures are as follows:

Indicate your agreement or disagreement with each statement:

• Some people avoid touching me once they know I have HIV.
• People have physically backed away from me when they learn I have HIV.
• People seem afraid of me once they learn I have HIV.

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

Back to OR Toolkit Home Page
Back to AIDSQuest Home Page