HIV & AIDS related stigma still exists in many communities in the world. Stigma perpetuates discrimination and this is a key contributor to the spread of HIV & AIDS in the world today. Africa carries the heaviest burden of the disease, with 60% of the world's total of infected people. A universal social attribute, such as stigma, that fuels the spread of HIV & AIDS is bound to affect African communities more than other communities around the globe. Interestingly, communities of African descent in the Diaspora are similarly affected due to similar socioeconomic status as well as cultural practices inherent in most African communities.(2)
Historically, African communities tend to be among the most marginalized in every society. As a consequence, stigma severely affects this population. Stigmatisation leads to social differences and inequalities of class, race, gender and sexuality. Stigma produces social relations exacerbating power hierarchies further marginalizing already social excluded groups. Stigma perpetrates social labels that radically change the way people are viewed and view themselves. It is a diverse and complex phenomenon with ramifications on a variety of social dimensions bringing with them often harmful consequences. Many people living with HIV & AIDS are exposed to stigma(s), and live in isolation and are thus denied services due to that associated with the disease. Stigma reinforces pre-existing negative assumptions, beliefs and prejudices and can thus seriously affect services such as voluntary counselling and testing. This CAI brief sets out the components and expounds upon the ramifications of stigma around HIV & AIDS.
Root "causes" of stigma - fear, denial, shame
The causes of stigma in the HIV pandemic are rooted in the fears associated with HIV & AIDS. Many people, particularly in vulnerable populations around the world, are steeped in surroundings characterised by an unnecessary fear of HIV & AIDS. Studies in African communities have shown how attributes such as stigma, suffering, and shame are preventing efforts to fight the disease.(3) Many still associate HIV infection with instant death, even in communities with more acute endemic diseases such as malaria. Closely related to the fear of death is the denial in many communities of the existence of the disease. Often the cause of death due to AIDS is not disclosed at funerals or in the obituaries, obscuring the reality of the epidemic. Family members are ashamed to disclose the cause of death as AIDS. It is common to hear the relation of someone who died identify the cause of death as witchcraft or poisoning.
The myths associated with HIV & AIDS in many communities perpetuate the growth of stigma. Common beliefs, misconceptions and folk explanations further reinforce both disinformation and denial. For example, many youths feel that they are invincible and that nothing bad will happen to them; many more still believe that HIV does not cause AIDS. Many people live in denial, or fail to disclose their HIV status, in order to protect their families from social condemnation.
Fear of the unknown which is the driving force of both ignorance and stigma itself. In addition, many people think the infection is contagious and therefore associate it with diseases such as the common cold. There is a lack of understanding about HIV transmission.
Consequently, people living with HIV & AIDS are discriminated against due to many factors, among them the fact that HIV & AIDS is a life-threatening disease that is incurable. The disease is also associated with a degradation of the body which may result in disfiguring. In cultures particularly dedicated to celebrating life, fear associated with death and HIV & AIDS results in people living with it being shunned. For many years, many societies have associated HIV & AIDS with homosexuality, injection drug use, promiscuity and prostitution. As a consequence, the disease has been perceived by religious groups as punishment for moral failings, thus inflicting guilt on those infected and affected. Negative stereotypes reinforce stigma and discrimination.
Gender stigma and discrimination
Stigma affects vulnerable groups most, particularly women. Due to existing societal gender inequalities, women are often economically, culturally and socially disadvantaged as compared to men. Women lack equal access to treatment, financial support and education on HIV & AIDS. Cultural standards for female versus male sexual behaviours differ. It is often believed that promiscuous women deserve to become infected, while promiscuous men are merely proving their manhood. Gender power dynamics assert themselves in sexual partnerships. Condoms are seen as an indicator of non-monogamous behaviour, and are deemed ‘non-permissible' between married couples especially. If they propose the use of condoms, for instance, many women face abuse and abandonment by husbands, some of whom were their source of infection. Furthermore, pregnant women with HIV suffer multiple layers of stigma. The degree and intensity of stigma generally increases within additional vulnerable groups, such as sex workers or injection drug users.
The power of the media
Media play a role in the definition and dissemination, as well as the eradication, of stigma. As such, there is positive media and negative media. HIV & AIDS more often than not receives negative publicity through the use of disempowering terms such as "victim," "sufferer," "carrier" of AIDS even when people have not developed full-blown AIDS. The media portrays and conveys images of hopelessness and helplessness of and to those infected and affected by the disease. Negative media will always exaggerate messages hence perpetuating stigma and discrimination of those infected and affected.
Impact of stigma, denial and discrimination on combating HIV & AIDS
The forms of stigma and discrimination around HIV & AIDS are diverse: they range from partner abandonment, accusations of infidelity and isolation to total rejection by family and friends. The surrounding community as well, might resort to physical violence, graffiti, name calling and destruction of property as acts of stigmatising an HIV-positive person, and his or her family. Systemic discrimination is exhibited through denied employment, firing, breaches of confidentiality, isolation and rejection. Service providers can also use file tagging, marking of wards or service areas; and staff may be unwilling to work with patients or clients and also engage in breaching confidentiality as matters of stigma.
Stigma impedes the fight against HIV & AIDS. It causes reluctance to disclose, thus promoting secrecy, finally arguably abetting transmission. It drives the epidemic underground. Health seeking is minimised and preventative measures are left used. No open discussions about HIV & AIDS take place when stigma prevails in a community. Pervasive stigma also prevents identification of so-called AIDS-orphans promotes oppression of women.
Interventions to reduce HIV & AIDS
Although much research has been conducted on ways of reducing stigma, many gaps still remain. Some areas that need to be addressed include the relation to scale and duration of impact and gendered impact of stigma reduction interventions. Stigma causes undue stress to individuals living with HIV & AIDS and is an impediment to effective care and management of the disease.(4) At the same time, those individuals who have just been diagnosed have internalised stigma that further distances them from accessing support services:(5) even where they would, many people living with HIV & AIDS are unable to access antiretroviral therapy (ART) thus hampering follow up efforts by care providers.
Yet several interventions have been attempted in the fight against stigma.(6) Many begin with - and are based on - academic research. Some studies addressed the issue of tolerance and coping mechanisms of people living with HIV & AIDS in the general population, for example, to seek means to increase such tolerance and ability to cope. Strategic intervention to educate all stakeholders should continue.
Education is the tool that will reduce stigma from communities in order to reduce escalation of HIV & AIDS. Ignorance is always a barrier to advancing any knowledge. In order to overcome this barrier, the correct questions must be asked, such as why is the epidemic escalating despite all the efforts by stakeholders? Do we have the right information? Do we know all the confounding factors? Do we know that stigma is a barrier? Are all stakeholders ready to build the courage to defeat stigma? Education is key. Studies have shown that when people have been prepared through the right education they will be more willing to get tested, to seek treatment and to change their behaviours. They will be less affected by stigma, shame and guilt,(7) and able to contribute to an equally more tolerant society.
Successful structural and social marketing interventions that aim to reduce stigma will drastically reduce resistance against seeking voluntary counseling and testing among other services. Governments as well as community organisations, advocacy groups and churches need to work together for effective change. In particular, Governments need to re-examine laws that perpetuate stigma against HIV & AIDS. Such laws include those that require compulsory screening and testing and specifically for "risk groups," notification of HIV & AIDS cases, restriction of one's rights to anonymity and confidentiality and restricted rights to movement of those infected. While some countries such as the USA (8) and China (9) recently lifted the ban on entry for people testing positive, there are still other countries that have not done so and need to follow their example. Such Government action needs to be backed up by other stakeholders, especially affected communities through education and advocacy.
In order to reduce HIV-related discrimination, there is need to understand and act on social attributes such as stigma that continue to plague many communities of African descent around the world. The discrimination and devaluation of identity associated with HIV-related stigma are created by individuals out of fear and denial. Strong leadership and political will with commitment at local, national and international levels are a prerequisite in ending HIV-related stigma.
Finally, supporting people of African descent in their various capacities e.g. community work, care provision and research will empower the community to fight HIV & AIDS whether they reside on the Continent or in the Diaspora.
Written by: Jacobet Edith Wambayi, PhD (1) of Consultancy Africa Intelligence
(1) Jacobet Edith Wambayi is an External Consultant in Consultancy Africa Intelligence's HIV & AIDS Unit (email@example.com).
(2) Lawson E. et. Al, "HIV/AIDS Stigma, Fear and Discrimination: Community/ies In The Lives of African and Caribbean People Living With HIV In Toronto," Abstract, Can J Infect Dis Med Micro Biol 16(SA): S45A.
(3) Margaret A. Chesney, 'HIV/AIDS Stigma: An Impediment to Public Health', Americaqn Behavioural Scientist.
(5) Rachel S. Lee, Arlene Kochman, Kathleen J. Sikkema, "Internalized Stigma Among People Living with HIV-AIDS", AIDS and Behavior Volume 6, No. 4 (December 2002): 309-319.
(6) Lisanne Brown, Kate Macintyre, Lea Trujillo, "Interventions to Reduce HIV/AIDS Stigma: What Have We Learned", AIDS Education and Prevention Volume: 15, Issue: 1.
(7) S C Kalichman and L C Simbayi, "HIV testing attitudes, AIDS stigma, and voluntary HIV counselling and testing in a black township in Cape Town, South Africa," via personal correspondence with Seth C Kalichman, Department of Psychology, 406 Babbidge Road, University of Connecticut, Storrs, CT 06269, USA; firstname.lastname@example.org.
(8) 'US lifts HIV/AIDS immigration ban', BBC News, 4 January 2010, http://news.bbc.co.uk/2/hi/8438865.stm.
(9) 'China lifts entry ban n HIV/AIDS foreigners', Xinhua, 28 April 2010, http://www.chinadaily.com.