2004-2 Siyam'kela

Sexual Health Exchange 2004-2

Siyam'kela: linking research and action for stigma reduction in South Africa

Ndivhuwo Masindi

Stigma and discrimination have had a negative impact on the response to HIV/AIDS in South Africa. The typical story of a South African living with HIV/AIDS is that of a coerced or manipulated HIV test, conducted without pre-test counselling. Diagnosis was often followed by a brief counselling session, mainly informing the person of impending ill health and death. People living with HIV/AIDS (PLWHA) are left to struggle with emotional devastation, anger, denial, self-blame, withdrawal, and the need for disclosure. Disclosure can lead to subsequent harassment, rejection and social exclusion on different societal levels.

Addressing HIV/AIDS-related stigma and discrimination is extremely challenging. Interventions have only slowly moved beyond documenting negative, discriminatory experiences. Policy and programmatic responses have mostly focused on addressing discrimination. As a result, overt acts of discrimination have decreased, but stigma is still common. The subtle, but pervasive nature of stigma needs theoretical understanding to inform and monitor stigma-mitigation interventions. Measuring the nuances and the ridiculing nature of stigma will allow to understand and address stigma effectively.

Siyam'kela Project: paving the way

In an effort to assist programmes to find ways to reduce HIV/AIDS stigma, the Siyam'kela Project conducted qualitative, exploratory research across South Africa with faith-based organisations (FBOs), PLWHA who had worked with the media, and workplaces. Siyam'kela means "We Are Accepting" in the Nguni language. For this project it has been interpreted as "Together We Stand". The fieldwork revealed attitudes towards HIV/AIDS and PLWHA in South Africa, and allowed distinguishing two types of stigma: enacted and internal stigma.

Enacted stigma refers to the actual experience of discrimination and stigma. It often originates from fear and perceptions of PLWHA as immoral or dirty. Consequently, PLWHA suffer rejection and avoidance by family, friends, colleagues and faith communities. Reporting on HIV/AIDS often fails to show that people from different backgrounds are vulnerable. The general perception is that HIV/AIDS is a disease of women and Africans. This is related to the fact that women are often first to discover their HIV-positive status on attending public health services; also, the impact of the disease is more visible in poor socio-economic conditions, as those who can afford antiretroviral drugs are able to hide their HIV-positive status.

Results show that PLWHA are often perceived as guilty and deserving, and judged according to a continuum of guilt and innocence. HIV-positive single women are often seen as promiscuous and therefore guilty, while HIV-positive men are usually regarded with more sympathy. Sometimes women, mostly married women, are seen as innocent.

Many PLWHA report verbal and physical abuse, and some are excluded from social opportunities. A young PLWHA may not be sent to university by his/her family because s/he is considered to be dying soon.

The fear of HIV/AIDS has created a culture of suspicion. As a result, employees working in HIV/AIDS programmes and those that are passionate about the subject are considered to be HIV-positive. Similarly, symptoms such as a persistent cough or weight loss is often associated with AIDS.

Internal stigma refers to PLWHA's shame associated with HIV/AIDS, and the fear of being stigmatised. Siyam'kela findings show that many PLWHA perceive themselves as guilty, a disappointment, and a threat to others. This internalised stigma often leads to social withdrawal and self-exclusion for self-protection. E.g., a PLWHA may not apply for a job for fear of being found HIV-positive.

In the workplace, PLWHA are often considered unproductive and a waste of resources. Hence, employers are reluctant to invest resources in HIV-positive employees. Unfortunately, many PLWHA work extremely hard to prove that they are effective in order to counteract this perception.

All these fears make disclosure of HIV-positive status a difficult choice. This drives the epidemic underground and perpetuates its silent nature, thus undermining preventive strategies and affecting health-seeking behaviour.

The research findings led to the development of information materials and tools for understanding HIV/AIDS stigma, as well as sector-specific guidelines for stigma mitigation. In response to the global lack of monitoring tools for stigma-mitigation interventions, Siyam'kela has developed indicators for measuring internal and external (enacted) HIV/AIDS stigma, as well as means of verification in different contexts.¹

Lessons learned

The research with FBOs, managers and PLWHA working with the media has enabled the project to develop specific stigma-mitigation guidelines, providing practical pointers on promoting leadership, policy development, and incorporating practical HIV/AIDS stigma-mitigation strategies into existing programmes. In addition, a review of promising practices was conducted to show what has worked, highlighting tips for replication for each sector. This has shown the following lessons:

Specific, innovative stigma-mitigation efforts are needed; for example, a "stigma audit" can help identify stigmatising attitudes and actions. For this purpose, the set of HIV/AIDS-stigma indicators mentioned can be modified for data-collection efforts in other contexts.

Raising awareness on AIDS-related stigma should involve a self-reflection process on the experience and impact of other types of stigma, such as stigma related to race, gender or sexual orientation. It is important to target institutions and individuals who can shape public perceptions, such as religious leaders, politicians, media, and traditional and community leaders, and strengthen their leadership capacity to mitigate stigma.

The use of disempowering words and images should be avoided. Words such as "guilty" and "innocent" create perceptions of fear and moral judgment. Therefore, HIV-prevention programmes should focus on high-risk behaviour, rather than high-risk social groups, as this may lead to ostracising these groups and a false perception of being immune to HIV if one does not belong to these groups.

Stigma mitigation should be mainstreamed into policy development, programme design and implementation of AIDS interventions; this can be achieved through strategic partnerships.

Actively involving PLWHA in multi-sectoral interventions can help demystify and normalise the epidemic; it is important to strengthen PLWHA's capacity to lobby for positive media coverage, as the media can shape public perceptions on HIV/AIDS.

FBOs should focus on inclusive, rather than exclusive theological reflections on God, using the Word of God as an instrument of hope and reconciliation.

In 2004, Siyam'kela will develop and test training programmes to reduce AIDS-related stigma in FBOs and the workplace. A participatory baseline study will be conducted to test and evaluate the newly developed indicators and inform the development of the training programmes, before they will be implemented.

Ndivhuwo Masindi, Siyam'kela Project Manager; Centre for the Study of AIDS; Huis and Haart Building, University of Pretoria, 0002, South Africa; tel.: +27-12-420.44.09, fax: +27-12-420.43.95, e-mail: ndivhuwo.masindi@up.ac.za, web: www.csa.za.org

1. All these materials can be found on the website www.policyproject.com/siyamkela.cfm. See also the Box.

Indicators for change

One of the outcomes of the Siyam'kela Project was the development of the publication Siyam'kela HIV/AIDS stigma indicators. A tool for measuring the progress of HIV/AIDS stigma mitigation. In this toolkit, 12 groups of stigma indicators have been operationalized, divided in two categories.

External stigma:

1 Avoidance

2 Rejection

3 Moral judgement

4 Stigma by association

5 Unwillingness to invest in PLWHAs

6 Discrimination

7 Abuse

Internal stigma:

8 Self-exclusion from services and opportunities

9 Perception of self

10 Social withdrawal

11 Overcompensation

12 Fear of disclosure

With these indicators, stigma can be measured before, during and after an intervention project, so that success of the intervention in terms of stigma mitigation can be measured.

More information: Siyam'kela HIV/AIDS stigma indicators. A tool for measuring the progress of HIV/AIDS stigma mitigation. The POLICY Project South Africa & The Centre for the Study of AIDS, University of Pretoria, www.policyproject.com/Special/SA_stigma.pdf (27 p.)