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HIV and AIDS stigma: Key issues to emerge

1. Factors affecting stigma and discrimination

The discussion raised the question of whether stigma and discrimination levels decrease in situations where HIV infection rates are high enough for AIDS to be ‘seen’ on the streets. According to one participant stigma in South Africa has become more entrenched as infection rates have risen, while in other countries high infection rates have seen stigma lessen.

Greater availability of treatment can also help reduce stigma in some cases (though not always) since people may be more able to ‘hide’ their HIV status.

Work with couples where one partner has HIV and the other doesn’t (discordant) was raised as an opportunity to tackle stigma in an immediate concrete way. There might be gender challenges in such instances, however, since it often takes time to reveal positive status to partners.

2. Priorities for tackling stigma and discrimination

Suggestions included the need to use a rights-based approach and to look at stigma over the longer term as a social issue. We can also learn from other health challenges like leprosy, and examine the moral issues that underpin stigma.

Approaches such as Stepping Stones – where local communities work with their own assumptions and local practices over a period of weeks in participatory workshops – are seen as a useful way to combine individual and community action on stigma.

At the same time, there is a gap between encouraging work on the ground and changes in policy. Some participants commented on the barrier of continued stigma and assumptions about developing countries by those in the North.

3. Involving those most affected by HIV and AIDS

It is vital to involve people affected by HIV and AIDS to empower a relevant response. However, participants felt it is important to differentiate between the needs of people living with HIV and AIDS, and the wider circle of those affected – and to unpack the needs of different groups.

Many face a ‘double stigma’: belonging to an already stigmatised, marginalised group, and having the additional stigma of being HIV positive. Media often portray people with HIV as victims, yet it is difficult to stand up and be identified in public when you are on the receiving end of stigma.

4. Tackling institutional discrimination

There is a need to address stigma in institutional settings, such as schools and workplaces, and to link this to both wider laws and policies, and to the interpersonal dynamics of small groups of people in each setting.

National campaigns and policy changes have an important role to play in addressing stigma at this level. In one example, staff exchanges between Indian and Ugandan organisations had made them aware of their own assumptions, through an exchange of cultural experiences.

5. Linking initiatives at community, institutional and policy levels

Defining the extent of the problem and developing a picture of what the gaps and needs are with different stakeholders is a priority in any setting.

Some participants felt that National Aids Councils/Commissions (NACs) could be a mechanism to drive integration. Others questioned the capacity of NACs to take on this role and suggested that all groups should take responsibility for action on stigma.

A number of participants’ experiences, in Guatemala and Malawi for example, highlighted gaps between what is on paper (the legal framework) and what happens on the ground. Media campaigns on stigma have also failed to connect with communities.

Even where ‘voice’ and local empowerment is encouraged, it is hard to link to wider democratic process when the society lacks spaces for dialogue. Funding patterns often made it difficult to link up beyond the specifics of particular projects. Finally, participants questioned how appropriate it was to ‘scale up’ interventions that work in very specific contexts.

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Key facts

This blog is part of the Spark discussion HIV and AIDS stigma.
This discussion includes:
-Intro: HIV and AIDS stigma
-DFID review: Tackling stigma at all levels
-Street theatre and clowning in Guatemala
-Key issues to emerge

Read more about the Spark project and other discussions