Interventions to Reduce HIV/AIDS Stigma: What Have We Learned?

From the Executive Summary

Stigma is a common human reaction to disease. Throughout history many diseases have carried considerable stigma, including leprosy, tuberculosis, cancer, mental illness, and many STDs. HIV/AIDS is only the latest disease to be stigmatized.

This paper reviews 21 interventions that have explicitly attempted to decrease AIDS stigma both in the developed and developing countries and 9 studies that aim to decrease stigma related with other diseases. The studies selected met stringent evaluation criteria in order to draw common lessons for future development of interventions to combat stigma. This paper assesses published and reported studies through comparison of audiences, types of interventions, and methods used to measure change.

Target audiences include both those living with or suspected of living with a disease and perpetrators of stigma. All interventions reviewed target subgroups within these broad categories. Types of programs include: general information-based programs, contact with affected groups, coping skills acquisition, and counseling approaches. A limited number of scales and indices were used as indicators of change in AIDS stigma.

Key Results

• While it may be unrealistic to think that we can eliminate stigma altogether, the studies reviewed here show that we can do something about stigma and that it can be reduced through a variety of intervention strategies including information, counseling, coping skills acquisition, and contact.
• Among studies with a control or comparison group that received the standard of care - information only - adding another intervention strategy such as counseling or coping skills acquisition was effective in changing attitudes and behaviors. While the added interventions as a whole reduced stigma when compared to control or comparison groups, those studies that tested several different modes of the same strategy (e.g., different approaches to providing information or coping skills acquisition) generally found no differences between intervention groups.
• Many of the interventions tried in developing countries were community-based, compared to most of the interventions in the United States, which were aimed at individuals (students or the assumed “at-risk” subgroups). This may partly be a reflection of the types of strategies tested, but this preference given to community-based approaches in developing countries may reflect an understanding that stigma must be dealt with at both a collective and individual level. In many parts of sub-Saharan Africa, where many of the studies reviewed took place, everyone is at risk.
• The majority of interventions that took place in developing countries were not evaluated rigorously. Cross-sectional data, non-probability, and small convenience samples were often used to try to measure change in attitudes or beliefs. It is generally not possible to tell from the studies how stigma is being measured. Two studies use a stigma-scale to measure the concept of “tolerance” toward an HIV-positive person. Several other studies assessed tolerance through hypothetical situations such as willingness to sit beside/eat with/share utensils with a person living with HIV/AIDS (PLHA).
• Finally, few studies assessed sustained changes in stigma-related attitudes and behaviors overtime. Most post-intervention tests were conducted immediately after the intervention, and none of the studies looked at the possible long-term impact of the interventions.

Recommendations for Future Research

This review identifies the following gaps in our knowledge of how to reduce stigma:

• First, relatively few interventions to reduce AIDS stigma have been conducted (or at least rigorously evaluated, documented, and published) in developing countries. Many more interventions need to be tested. If future research is to benefit and learn from past interventions, the results of these studies need to be widely disseminated.
• Second, not all types of interventions have been tested in all settings or populations. For example, inducing empathy for PLHA through direct contact has proven successful in reducing stigma and increasing positive attitudes in the United States However, we do not know much about how well this approach works in developing countries. Consider, for example, how many PLHA there are living in many communities in Africa, and yet stigma remains despite their presence.
• The authors were surprised to find only two examples of national level effects (and only one in India that was truly a national campaign) to combat stigma. We expected to find more studies on the effect of mass media campaigns on stigma, but if they do exist, they have not been documented in the published literature.
• This review tells us that stigma can be reduced, at least in the short term and on a small scale. But we need programs that scale up efforts to combat stigma. We need evidence of comprehensive programs that use multiple channels and target entire communities including health workers and PLHA. In such comprehensive programs, once stigma has been reduced, does it remain at a low level? Another gap appears to be the few interventions targeting the young.
• Finally, the increased access to drugs within the context of developing countries may have important effects on stigma and must be documented. In effect “What drives stigma” is an especially important and complex question given the rapidly changing and dynamic situation that surrounds the epidemic.

ERT included paper – was not in the scan results