Measuring Stigma
Measures for negative judgments of people living with HIV

Excerpted from Evidence-based Generic Tools for Operational Research on HIV, Carla Makhlouf Obermeyer (ed.), 2008 (forthcoming), Geneva: World Health Organization.

Assumptions and judgments are made about the moral conduct of people living with HIV, and these judgments are manifested in stigmatizing attitudes (Ogden and Nyblade 2005; Policy Project 2003; Pulerwitz et al. 2004). Such valuations represent an important domain of stigma and discrimination. Survey items exploring this dimension of stigma are used to measure the following indicator:

• Percent of a population who express negative judgments and blame toward people living with HIV.

This dimension has been less frequently measured than the fear of casual contact (Nyblade and MacQuarrie 2006), but a variety of promising survey items have been developed to measure feelings of blame and judgment toward people living with HIV. The items related to this dimension of stigma tend to ask about the following topics: whether HIV infection is a punishment, if the person infected is to blame, and if the infection brings shame upon the person and those associated with him/her.

Recommended negative value judgment items for use in surveys with the “general population” are as follows:

Indicate your agreement or disagreement with each statement:

• AIDS is a punishment for bad behavior.
• AIDS is a punishment from God.
• A person with HIV must have done something wrong.
• People who got HIV through sex or drug use have gotten what they deserve.
• People with HIV should be ashamed of themselves.

Healthcare workers can also express value judgments toward people living with HIV, so it is recommended that studies in the healthcare setting also include the types of items listed above.

Perceptions and experiences of negative value judgments by community members can also be measured from the perspective of people living with HIV, using the following recommended survey items:

Indicate your agreement or disagreement with each statement:

• People have told me that getting HIV is what I deserve for how I lived my life.
• When people learn you have HIV, they look for flaws in your character.
• Most people believe that a person who has HIV is dirty.
• Most people think that a person with HIV is disgusting.

Finally, it is important to examine self-directed negative value judgments among people living with HIV, or “internalized stigma,” with the following indicator:

• Percent of people living with HIV reporting internalized stigma.

Various aspects of internalized stigma can be measured using the following recommended survey items:

Indicate your agreement or disagreement with each statement:

• I sometimes feel worthless because I am HIV-positive.
• I feel guilty because I have HIV.
• I feel I am not as good a person as others because I have HIV.
• Having HIV makes me feel that I'm a bad person.

In the past 12 months, have you ever found yourself avoiding or isolating yourself from friends or family because of your HIV status?