September 15, 2009
Combating HIV stigma is no easy feat. More than 25 years into the HIV pandemic, it's a problem that is still prevalent around the world. And as a recent report outlines in vivid detail, even health care settings are rife with HIV stigma and discrimination, particularly in resource-poor countries.
The report, written by researchers at the International Center for Research on Women and published in the Journal of the International AIDS Society in August, illustrates exactly how common HIV stigma is among health care providers in the developing world. But it also shows how fighting stigma among providers can dramatically improve the quality of care given to their HIV-positive patients. The authors provide concrete examples of what health care providers can do to help.
As part of the report, the writers reviewed numerous studies whose findings highlight how stigma affects HIV-positive people around the world. They found that for many people with HIV, stigma is a serious barrier to getting the care they need. In Jamaica and Botswana, for instance, researchers found that fear of discrimination by health workers led many people to seek HIV testing and treatment services only when they were already quite sick, well after the point when medical interventions would be most effective.
Even when people find the courage to access care, the report added, adherence is often a struggle in a world where being HIV positive is not socially acceptable and only limited support is provided.
In a striking example from South Africa, researchers found that some HIV-positive people were so concerned about being publicly identified as having HIV that they ground their antiretrovirals into an unrecognizable powder or stopped taking them altogether.
The report also notes that many HIV-positive people only seek care far from where they live for fear of being seen, or due to worry that doctors or nurses in their own community might let their status slip to the public.
Unfortunately, the authors found evidence that these fears are far from irrational. For instance, in a Nigerian study of nurses and laboratory technicians, 35 percent felt that HIV-positive people deserved having HIV as punishment for their "sexual misbehaviors."
In addition, a study in Tanzania found a series of discriminatory behaviors on the part of health care workers towards their HIV-positive patients. Some of these slights were relatively minor, such as gossip. But others were much more severe, including the disclosure of patients' HIV status and outright neglect or denial of care. The reported noted that similar problems were seen in studies in Ethiopia, India and elsewhere.
The report offered three main explanations for the HIV stigma that is held by many health care workers in developing countries:
The report emphasizes that the key to fighting stigma is knowledge. Studies in Mexico, Ethiopia, Nigeria and Tanzania revealed that a lack of understanding regarding how HIV is transmitted (and how health workers can protect themselves) led many health care providers to become fearful of getting HIV from infected people. The writers emphasize that this has to change. When people understand that HIV is not casually transmitted, they tend to relax and become less fearful of people with HIV, the report noted. For caregivers, that means they are able to provide better care.
The report's writers emphasize that understanding the negative consequences of stigma improves patient-provider interactions. For example, they said that health care workers need to understand that publicly discussing a specific person's HIV status or wearing gloves when they're unnecessary are stigmatizing actions. These small actions reinforce the idea that people with HIV are dangerous or immoral, and make people with HIV more hesitant to seek care.
Several studies have also shown that the quality of care for HIV-positive patients increases dramatically once health care settings make reducing HIV stigma a priority.
One study in Vietnam, for instance, showed that, after a stigma-reduction intervention, health care workers were more careful in their use of universal precautions and less likely to single out HIV-positive patients. The study also found that patients were more likely to get tested for HIV, suggesting HIV prevention benefits in addition to improved care for people with HIV.
The International Center for Research on Women paper gives details about how hospitals and other health care settings can craft effective anti-stigma policies that will educate and guide the providers who work there. The authors recommend using techniques such as training sessions that provide information on HIV transmission basics, universal safety precautions, stigma awareness and other issues.
However, while these methods work well throughout the world, the authors noted that they are most effective when backed up by a social and political system that emphasizes non-judgmental HIV care.
In Brazil, where there is universal access to antiretroviral medications for people with HIV who need them, researchers have documented positive relationships between HIV-positive people and their health care providers: HIV-positive people in Brazil are more likely to seek care and treatment, and also become actively involved in medical decisions.
The International AIDS Society (IAS) has teamed up with several non-governmental organizations to raise awareness of HIV stigma.
In 2007, IAS and the French group AIDES launched the "If I Were Positive" campaign. At the International AIDS Conference in 2008 (AIDS 2008), they expanded the program's goals to fight against discriminatory travel bans and launched the Web site HIVtravel.org.
IAS also worked with the company Smart + Strong (owners of Poz.com) on the project Infected and Affected: Portraits of a Community Combating Stigma, which photographs diverse responses from people from around the world as they discuss HIV stigma.
However, despite these efforts, HIV stigma remains a serious problem around the world. It may take many more years to change this situation, but by becoming aware of stigma and actively working against it, health care providers -- and everyone else -- can make a huge difference in the lives of people with HIV, particularly in developing countries.