Challenging Dogma - Spring 2008

...Using social sciences to improve the practice of public health

Friday, April 18, 2008

Know Stigma: Why the “Know Your Status” Campaign in Lesotho was bound for failure – Sonali Padhi

Currently, about one in four people in Lesotho has HIV or AIDS and by 2021 that figure is expected to rise to one in three (1). This epidemic has taken a devastating toll on the country that now has an average life expectancy of 39 years for men and 44 years for women (1). Without the HIV/AIDS burden the average life expectancy would be 70 years (1). This alarming discrepancy has forced the government of Lesotho to take action against the epidemic. The latest program is the “Know Your Status” campaign, which started in 2005. The campaign employed community-based workers to go door-to-door offering voluntary, confidential HIV/AIDS testing. The “Know Your Status” campaign in Lesotho claimed that by 2007, all Basotho would know their HIV status, but it did not achieve this goal because it failed to address the issues of stigma, confidentiality, treatment adherence, and the root cause of the problem.
Stigma Theory
There is a stigma associated with HIV and AIDS in Lesotho for several reasons. To begin, HIV and AIDS are relatively new concepts in Lesotho. The first documented AIDS case in Lesotho was in 1986, but the government did not initiate an AIDS program until ten years later (2). Accurate surveillance techniques on HIV prevalence and incidence rates were not in place until 2000 and government–sponsored condom distribution did not start until 2001 (2). And the first antiretroviral therapy program was not started until 2001 (2). Due to these factors, HIV and AIDS were not extensively discussed in Lesotho until the year 2000. The discussion started mostly in the capital city and slowly disseminated to the districts and then the rural areas. In the meantime, rumors, myths, and misinformation spread more quickly on what the disease was, how it was contracted, and how the disease progressed. Even now, people do not die of AIDS. They die from a “cough”, a “cold”, maybe tuberculosis. Even though, Basotho people attend funerals every Saturday, no one talks about the real killer, AIDS. This is due to the social stigma. Once someone is known to have the disease, he or she can be shunned from his or her community or even from his or her family (3). Sometimes the whole family is shunned. The Basotho are terrified of being tested because being labeled as HIV positive, in their eyes, is a death sentence, socially, even if not physically. When I was living in Lesotho, I asked my Sesotho language tutor why she had not been tested and she said, “If I get tested and I am positive everyone will know. People will be afraid to eat the food I serve, they will not come to my house anymore, I will be ostracized and I cannot afford to live like that. I would rather not know and just die.”
One reason the “Know Your Status” campaign failed is that it did not address this issue of social stigma in its design. Lesotho is a small country of about 1.8 million people (4). About 70% of the people live in the rural mountainous areas, in villages (5). These villages are very tight-knit and families are in close contact with one another. Even in the capital city, Maseru, where about 500,000 Basotho live, the community is quite close and news can travel very fast (5). Due to this dynamic, confidentiality is a hard concept to enforce. The campaign employed people from the villages to conduct door-to-door testing. This means that your neighbor that you may go to church with every Sunday would know your HIV status. Moreover, the villages are not very private as the housing, rondovals, are often very close to each other. Therefore, the community-based worker may be overheard by neighbors. Lastly, health centers, clinics, and hospitals are often one per village area and the HIV treatment facilities are separate from the rest of the medical services. Therefore, if you go to receive HIV treatment or to be tested, it is likely that you will run in to your neighbors and they may be able to determine what treatment you are seeking by what area you enter. The campaign did not address the fact that confidentiality is not present in Lesotho and community members fear the stigma associated with being HIV positive.
Social stigma is a large issue in Lesotho, as it is in most cultures. Scrambler’s Hidden Distress Model postulates that people with stigmatized conditions fear social isolation and discrimination and may conceal their status to avoid these consequences (6). HIV is absolutely a stigmatized condition in Lesotho and this model states that HIV-positive people in Lesotho may pretend to be HIV-negative to avoid the social consequences. If the Basotho felt they could conceal their status once they were tested for HIV, they may still be tested and then hide their results. However, because they feel that confidentiality is not present they may avoid testing all together to appear as a non-stigmatized member of the community (3). The campaign sent workers directly to people’s doors to be tested without discussing the stigma issues that people have around HIV testing. This method not only avoided the stigma issue, but actually may have intensified fears of discrimination and social isolation.
Intention is not linked to behavior
Another shortcoming of the campaign is that it rested on the Health Belief Model. It assumed that if individuals knew about the perceived severity and susceptibility of HIV/AIDS they would want to know their status. However, it is clear that intention is not linked to behavior (7). People act based on emotions, fears, and non-rational thought (8). The Basotho people are bombarded with messages via billboards, street signs, and graffiti about the risks of HIV, the importance of knowing your status, and statistics about treatment and death related to HIV/AIDS. They know that HIV/AIDS is a serious, deathly disease and the sooner they know their status, the better their chances are for survival. They know that one in four Basotho have HIV and that they are very susceptible to the disease depending on their lifestyle. This knowledge should lead a person to be tested, but emotions get in the way. The Basotho are intending to know their status, but it is a large leap from intention to behavior. The campaign assumed that people knew the risks of HIV; therefore, they would want to be tested. The campaign assumed, as the Health Belief Model postulates, that intention is directly linked to behavior. But the campaign needed to create that link from intention to behavior.
Furthermore, the campaign assumed that once people knew their status they would seek treatment and maintain treatment. The campaign did not provide treatment adherence protocols or assure that HIV positive people sought treatment. The Transtheoretical Model states that an individual can move backwards through the stages of change (9). For example, a HIV positive person can move from action (receiving treatment) all the way back to pre-contemplation (should I be taking treatment) before they move to maintenance (continuing treatment). Once again, intention is not linked to behavior. Once the HIV positive person knows their status they may intend to seek treatment, but that link needs to be made. The “Know Your Status” campaign could have created that link by providing treatment counselors or creating a check-in process for HIV-positive people.
Root Cause of HIV/AIDS was not addressed
Lastly, the campaign rested on a false assumption of the HIV/AIDS issue. The campaign was formed based on the assumption that the root of the HIV/AIDS issue was that people did not have the resources or access to be tested. However, the root problem is actually lack of prevention and risky behavior. The campaign did nothing to include prevention activities such as condom use, sexual education, and encouraging a change in risky behaviors such as having sex with multiple partners or having unprotected sex. Studies have demonstrated that treatment and prevention must go hand in hand for a campaign to be effective (10). If the campaign had included prevention strategies in addition to the door-to-door testing, it may have been more successful. Instead, the campaign focused on providing access to HIV testing, which most Basotho already have (11). While it may be a far trip to the local health center, the distance is not the discouraging factor. Basotho are used to walking for days to access health care facilities and most of their daily needs, if they live in the mountains. Creating proximity or ease of testing will not solve the epidemic. To combat the epidemic the campaign needs to incorporate prevention into its testing strategies.
A Better Approach is Possible
The campaign could have addressed these issues of social stigma, confidentiality, treatment adherence, and the root cause of the problem through a variety of tactics. The social stigma issue could have been addressed by offering formalized pre-testing counseling. This pre-testing counseling could have educated the people on what it means to live with HIV/AIDS, transmission methods, treatment options, and dispel some of the myths and rumors they may have heard. The confidentiality issue could have been addressed by embracing a more realistic concept of shared confidentiality. The Prime Minister of Lesotho has publicly stated, “The notion of shared confidentiality is more suitable to the HIV and AIDS context in Lesotho, where as more and more Basotho know their status, they will be more able to care for and support one another, as well as protect themselves and their partners, and thereby break down the walls of secrecy and denial, which feed the social stigma and discrimination (12).” The campaign could have incorporated support groups or treatment counselors into the treatment process to ensure treatment adherence. If an individual tested positive, they could meet with a support group or their treatment counselor to discuss the reality of treatment and provide a check-in process to ensure that the individual maintains the treatment protocol. The root cause of the problem is a difficult issue, but one that needs to be addressed. The campaign should have included a dialog on changes in risky behavior. Until Basotho start talking about the dangers of multiple partners, unprotected sex, and sex at a young age, these behaviors will not change.
In conclusion, the “Know Your Status” campaign failed because it did not take into account the issues of social stigma, confidentiality, treatment adherence, and the root cause of the problem. The campaign could have been more successful if it had incorporated pre-testing counseling to alleviate issues of stigma, embraced a more realistic concept of shared confidentiality, provided treatment support groups or counselor to assure adherence, and included prevention strategies to address the behavior changes needed to combat the HIV/AIDS epidemic. The people of Lesotho should know their status, but that knowledge is not enough.
References
UNAIDS 2007 AIDS Epidemic Update December 2007.
Avert. HIV and AIDS in Lesotho. United Kingdom: http://www.avert.org/aids-lesotho.htm
The International Community of Women Living with HIV/AIDS. Positive women's workshops in Swaziland and Lesotho. United Kingdom: http://www.icw.org/node/129.
Population Reference Bureau. Lesotho Statistics. United States: http://www.prb.org/Countries/Lesotho.aspx
Rural Poverty Portal. Rural Poverty in Lesotho. United Kingdom: http://www.ruralpovertyportal.org/english/regions/africa/lso/index.htm
Alonzoa AA and Reynolds NR. Stigma, HIV and AIDS: An exploration and elaboration of a stigma trajectory. Social Science & Medicine 1995; 41:303-315.
Marks DF. Healthy psychology in context. Journal of Health Psychology 1996; 1:7-21.
Ogden J. Some problems with social cognition models: a pragmatic and conceptual analysis. Health Psychology 2003: 22:424-428.
Prochaska JO, Redding CA, Harlow LL, Rossi JS. The Transtheoretical Model of Change and HIV Prevention: A Review. Health Education & Behavior 1994; 21:471-486.
Russel S. Gates calls for emphasis on HIV prevention. San Francisco Chronicle, August 2006 (http://www.sfgate.com)
H. Marseille E, Hofmann P, Kahn J. HIV prevention before HAART in sub-Saharan Africa. The Lancet 2002; 359:1851-1856.
World Health Organization. WHO applauds Lesotho Prime Minister for leading universal voluntary HIV testing drive. Switzerland: http://www.who.int/3by5/newsitem6/en/

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1 Comments:

  • At April 23, 2008 at 9:16 PM , Blogger Matthew said...

    You identify the root of the problem as lack of prevention and risky behavior. You also note social stigma as a separate problem. I would argue that these issues are very much interconnected; Stigma can often lead to risky behavior.
    Also, in response to the section, "A better approach is possible," I think reducing social stigma, as you have pointed out in your paper, is very hard to alleviate. You mention pre-test counseling as a potential remedy. My concern is that you are attempting to alter deep seeded social norms and perceptions about HIV. How would voluntary pre-test counseling increase the rates of individuals who know their status? If individuals were reluctant to get tested before, they might be even less likely to be willing to sit through a counseling session prior to the actual test. Also, if you attempt to change social norms by altering perceptions one person at a time, it could become a very slow and inefficient process.

     

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