Key reasons for why stigma persists are a lack of in-depth knowledge of HIV/AIDS, which allows fears of casual transmission to endure; strong norms about ‘improper' and "proper" sex and its association with HIV; and a lack of recognition of stigmatising attitudes and behaviour. The data shows how widespread stigma impedes programmatic efforts for HIV prevention, testing and disclosure, as well as care, support and treatment. For example, stigma leads to reluctance to be tested for HIV and limited disclosure of positive test results, while condom use or discussing safe sex are considered indications of HIV infection or immoral behaviours. Similarly, available care and support is accompanied by judgmental attitudes and isolating behaviour, which can result in PLWHA delaying care until absolutely necessary.

The study points to five critical elements to be incorporated in stigma-reduction interventions:

1. Create greater recognition about stigma and discrimination

The data shows there is often a gap between people's good intentions not to stigmatise, and their stigmatising attitudes and actions. Even when people are aware of stigma, they often do not recognise the harm it does, and their own role in either enacting or reducing stigma. Therefore, sensitisation is needed, including among those working in HIV/AIDS programmes, on 1) the existence of HIV stigma; 2) the forms it takes in our attitudes, language and behaviour; 3) the fact we should all take action because stigma is harmful to ourselves, our families and our communities; and 4) the fact that we can all make a difference by changing our own attitudes and actions.

2. Foster in-depth, applied knowledge about all aspects of HIV/AIDS through a participatory and interactive process

Gaps in knowledge and a lack of in-depth information about HIV/AIDS fuel the fear of casual transmission, leading to stigmatising actions and the belief that PLWHA are non-productive community members. Hence, interventions need to provide up-to-date, accurate, and in-depth information about all aspects of HIV/AIDS, particularly 1) how HIV is, and is not transmitted; 2) the difference between HIV and AIDS; 3) what it means to live with HIV, including the fact that opportunistic infections are treatable; 4) the longevity of a person with HIV; 5) that PLWHA are productive members of society; and 6) how to care for and support PLWHA.

This information needs to be provided through an interactive, participatory process, which allows people to examine their own experiences, concerns, and perceptions of risky situations and actually apply new knowledge in their daily lives.

3. Provide safe spaces to discuss the values and beliefs underlying stigma

Interventions to reduce stigma need to tackle difficult and often taboo issues. Our data suggests that interventions cannot tackle stigma without offering spaces for individuals and communities to:

• openly discuss sexual taboos and sexuality safely;
• voice and discuss the fear of death, particularly of premature, disfiguring and painful death; and
• discuss and understand the context of social inequity, especially the interaction of gender and poverty with stigma (see Box).

By providing a safe and non-threatening space, interventions can open up discussion and begin the long-term process of enabling individuals to adopt non-stigmatising principles, values and norms.

4. Find common language to talk about stigma

Programmers, policymakers and researchers need to use terms for stigma that are common in the communities they work in. If a common language does not exist, we need to invest in learning how to talk about stigma within that community. Where equivalent terms for stigma do not already exist in the vernacular, pictures, vignettes and stop-start dramas can be useful techniques to stimulate discussion.

5. Ensure a central role for PLWHA

PLWHA have a central role in stigma reduction at any intervention level. Bearing the brunt of stigma, PLWHA have the life experience and knowledge needed to design appropriate stigma-reduction responses. Several of the underlying causes of stigma identified in our study – fears of and misconceptions about casual transmission of HIV; the belief that PLWHA are different; and the belief that HIV equals immediate death and disability, rendering PLWHA non-useful members of a family or community – point to the critical role PLWHA have in dispelling the myths that allow stigma to persist.

Priority groups for targeting

While all individuals and groups have a role in reducing stigma, our study suggests policymakers and programmers should start with certain priority groups:

Tools for taking action

In addition to identifying these five key target groups, the study also uncovered a gap in available tools for NGOs and communities to address stigma. The research findings led to the collaborative development of a stigma-reduction toolkit – Understanding and Challenging HIV Stigma: Toolkit for Action – designed to create and deepen understanding of, and build capacity to address stigma. The toolkit is designed for participatory learning – sharing feelings, experiences, analysing issues, solving problems, planning and taking action. It can be downloaded from a website (www.changeproject.org) and is already in use in Africa.

Given the complexity of stigma, reducing stigma and discrimination faces many challenges, but many entry points for change exist that interventions can immediately build on.