A number of studies have provided evidence that stigma is associated with delays in HIV testing by people who are at high risk of being infected with HIV. The stigma is rooted in prejudices involving gender, sexuality, illness, and race. Organizations serving people living with HIV disease face important questions regarding stigma. How can they provide for patients who live with the very real threat of being ostracized?
HIV stigma, treatment and prevention | aidsmap
How can they help individuals cope with stigma? What can they do to help prevent or eliminate HIV-related stigma? The well-known social anthropologist Erving Goffman pioneered the study of stigma. Goffman is widely credited with providing the theoretical underpinnings that frame most stigma research. In his landmark book Stigma: Notes on the Management of Spoiled Identity , Goffman described stigma as "an attribute that is deeply discrediting within a particular social interaction. According to Goffman, a person who is stigmatized is "reduced in our minds from a whole and usual person to a tainted, discounted one.
Certain kinds of diseases carry more stigma than do others. According to Goffman and other researchers, diseases associated with the highest degree of stigma share common attributes: 4 , 5 , 6. HIV infection fits this profile. First, people infected with HIV are often blamed for their condition. Second, although HIV is treatable, it is nevertheless an incurable and progressive disease. Third, HIV transmission is not well understood by many in the general population. HIV-related stigma manifests itself in a variety of ways, which may be segmented into the following categories:.
The devaluation of identity and discrimination associated with HIV-related stigma do not occur naturally. Rather, they are created by individuals and communities who, for the most part, generate the stigma as a response to their own fears. HIV-infected individuals, their loved ones, and even their caregivers are often subjected to rejection by their social circles and communities when they need support the most. They may be forced out of their homes, lose their jobs, or be subjected to violent assault.
For those reasons, HIV-related stigma must be recognized and addressed as a life-altering issue.
Toolkit: Understanding and challenging HIV stigma in the MENA region
Gregory M. Herek, Ph. As early as , Herek observed that people diagnosed with HIV are viewed more negatively than people diagnosed with other incurable diseases. He also noted that gay men and injection drug users are disproportionately susceptible to HIV-related stigma and discrimination. Yet, people who acquired HIV through no action of their own are often referred to as "innocent" or "blameless.
Stigma may extend to professionals working on behalf of people with HIV disease as well as to volunteers and other caregivers. Hate crimes are criminal actions intended to harm or intimidate people because of their race, ethnicity, sexual orientation, religion, or other minority group status. A random-digit-dialing telephone survey conducted by Herek and John Capitanio sought to measure the extent of HIV stigma in the U. The authors found that When asked whether people living with AIDS should be separated from the general population, Herek and Capitanio conducted a similar follow-up telephone survey in , and a third in They wrote, "In our survey, for example, Following a telephone survey, Herek and colleagues concluded that some expressions of stigma declined during the s.
However, despite reductions in stigma, one-fifth of those surveyed in feared people with AIDS and one-fourth felt uncomfortable having contact with people with AIDS. Another finding underscored the power of stigma to extend to the economic realm: Nearly one-third said they would avoid shopping at a neighborhood grocery known to be owned by a person with AIDS. Disclosure of HIV positivity may provoke violence in intimate relationships.
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Abnormal bowel movements, characterised by loose, watery or frequent stools, three or more times a day. Many people find this term stigmatising as it suggests information which is normally kept secret. A serious disease caused by a parasite that commonly infects a certain type of mosquito which feeds on humans. People who get malaria are typically very sick with high fevers, shaking chills, and flu-like illness. Additionally, the stigmatised often blame themselves.
Some of the most complete and current data on the subject come from a four-country study, in which Dr.
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Even though the particulars varied in each setting, people are preoccupied with unlikely modes of transmission. For example, in Ethiopia, there was a fear that raw chicken eggs could transmit the virus, if hens came upon and pecked at used condoms. Sometimes even healthcare workers shared this fear of patients —even though they know how HIV is transmitted, they lacked confidence about how HIV is not transmitted. Even though people know that HIV is spread through bodily fluids, this is vague and leaves room for people to extend what they know about other infections to HIV.
This fear of HIV transmission is amplified when public health campaigns focus primarily on negative images of sick and dying people with HIV and AIDS, as well as by sensationalised media reports about risk-taking behaviour or infected persons purposefully exposing others. Finally, since HIV disease is a relatively recent phenomenon and knowledge about it is continually evolving, people worry that the current information about transmission might be wrong.
The link between stigma and morality is an ancient one and is apparent in the original definition of the word, which meant a mark or physical sign of something bad.
Most traditions have similar beliefs that illness is the result of some transgression or sin or social evil. This leads people to see the ill as deserving of their plight. Departing somewhat from the ICRW stigma report, its easy to blame religion for stigma — but the tendency to stigmatise the ill is so universal, it likely predates the development of faith and value systems. Stigmatisation has been documented in non-human primates as well. For example, Jane Goodall observed that chimpanzees avoided other chimpanzees who had lost the use of some of their limbs as the result of polio.
On the innocent side of the continuum are children, followed by health workers infected by treating their patients; while on the guilty end are the drug users and sex workers. An HIV-infected woman could be near either end of the continuum, depending upon whether she is believed to have become infected while faithful to her husband innocent or otherwise guilty.
The role of gender was another key similarity across all contexts. HIV is regarded as evidence that they have failed to fulfil this important social function.
Ogden and Nyblade divide stigma into four loosely defined groups: physical, social, verbal and institutional. And where no HIV programmes exist, they may also receive poorer care from the health sector. We just give them medicines We also treat small children here, so we give [HIV] infected people no injections at all. It should only be expected that people with HIV and AIDS would also start to stigmatise themselves, since they share the same belief systems as the rest of the community and are constantly subjected to the cruel, thoughtless, and hurtful actions of others.
Some of the commonly observed forms of internalised stigma in the ICRW research included loss of hope, feelings of worthlessness even suicidal feelings and inferiority, and belief that they no longer had a future. Many people with HIV drop out of school or give up on long term plans. People internalising stigma also isolate themselves from society, friends and family.
Understanding and challenging HIV/AIDS stigma
Bond describes this latter phenomenon in more detail see link. Stigma affects prevention in a variety of ways. For example, it allows the uninfected to deny their own risk of infection and perhaps not take adequate precautions to protect themselves. Condoms themselves have acquired a strong stigma through their close association with HIV in the press and health promotion campaigns.
HIV and AIDS-related stigma also discourages people to get tested or when they do get tested, from returning for their test results. People especially avoid clinics known to be HIV testing sites.