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Why is there stigma related to HIV and AIDS?

x002HIV/AIDS-related stigma is not a straightforward phenomenon as attitudes towards the epidemic and those affected vary massively. Even within one country reactions to HIV/AIDS will vary between individuals and groups of people. Religion, gender, sexuality, age and levels of AIDS education can all affect how somebody feels about the disease. AIDS-related stigma is not static. It changes over time as infection levels, knowledge of the disease and treatment availability vary.




Kiren Kaur, 37, has come to terms with HIV she contracted from her husband in 1997. The HIV positive status, per se, is not difficult to deal with. But dealing with the stigma that comes with it is an excruciating experience. 'My HIV status does not bother me any more,' she told IPS at the global conference on AIDS that concludes in Vienna Jul. 23. 'It is the double stigma that I face as a widow and an openly HIV positive person that is painful. It is stigma that prevents me from enjoying an intimate relationship (with my family).'

Kaur was 24 years old when her husband died in her arms of AIDS. She suspects he contracted HIV before marrying her.

'My husband was depressed after he was told he had AIDS and he did not talk much. He did not say how he got HIV and I did not ask,' says Kaur, who is a Bangkok-based coordinator for Women of Asia Pacific Network of People Living with HIV/AIDS, a support group.

Kaur's in-laws blamed her for her husband's death. She was forced to return to her parents. For many years, she was too depressed to do anything. Her HIV positive status was holding her back, but in 2004, Kaur agreed to set up a support group at a hospital in Kuala Lumpur.

That opened up a slew of other avenues. She became a member of the Kuala Lumpur AIDS Support Services Society (KLASS), another support group, and got the opportunity to travel to Bangkok to attend the International AIDS Conference on a scholarship partly funded by the University Malaya Medical Centre.



'Today I have a great career and I am happy but I still dream of falling in love and having children,' Kaur said.

What holds her back from realising her dream is social stigma.

While a great deal of success has been achieved in both the prevention and treatment of HIV, stigma and discrimination constitute the greatest barriers in dealing effectively with the epidemic, according to the United Nations Development Fund for Women (UNIFEM).

A combination of shame and fear leads HIV positive people to delay testing. It deters them from seeking early treatment and care, and encourages reckless sexual behaviour without contraceptives. Stigma is also known to affect the economic well being of HIV positive people.

In Asia, the spread of HIV is exacerbated by stigma and discrimination.

'Our part of the world continues to be shrouded in fairy tales. People strongly believe that our culture is self-regulatory, that young women have sex only after marriage and that men do not have sex with men,' Dr. Nafis Sadik, United Nations Special Envoy for HIV/AIDS in Asia and the Pacific told IPS. 'There is a total lack of awareness. Most women don't know about the use of condoms or about childbirth. Many people still think that AIDS is transmitted through a handshake.'

Research shows that illiterate women are four times more likely not to know how to prevent the contraction of HIV. Out of 875 million illiterate people in the world, 66 percent are women.



World Health Organisation (WHO) statistics reveal that HIV is the leading cause of mortality and disease among women of childbearing age between 15 years and 19 years worldwide.

Early marriage increases the risk of HIV infection. In Bangladesh, Ethiopia, India and Nigeria, 40 percent of women are married before the age of 15. And most women don't have any knowledge about the virus.

Only 1.2 percent women in Indonesia who are married or living with a partner use condoms. That number is 1.3 percent in Thailand, 8.3 percent in Vietnam and 5.2 percent in India.

Eastern Europe and Central Asia are the world's fastest growing epidemic region. The infection is expanding rapidly in the Baltic States, the Russian Federation and several Central Asian republics, fuelled by high rates of injecting drug use among young people.

In Southern Africa, the average HIV prevalence among young women aged between 15 and 25 is three times higher than among men of the same age. In sub-Saharan Africa, 60 percent of people living with HIV are women.

'As a woman, I am really happy to hear about microbicides (substances which reduce the risk of HIV infection), but as a HIV positive woman, it is too late for me. HIV positive women still have sex. If you have access to a female condom, you can protect your partner, and you can protect yourself from unwanted pregnancy,' said Carol Nawina Nyrienda, national coordinator of the Community Initiative for TB, HIV/AIDS and Malaria in Zambia.



Nyrienda contracted HIV from her husband. She advocates the use of female condoms because she says women can no longer take the risk of depending on male partners to keep them safe.


 

Different contexts of HIV-related stigma


In 2003, when launching a major campaign to scale-up treatment in the developing world the World Health Organization (WHO) claimed that:

As HIV/AIDS becomes a disease that can be both prevented and treated, attitudes will change, and denial, stigma and discrimination will rapidly be reduced.



It is difficult to assess the accuracy of this statement as levels of stigma are hard to measure. A number of small-scale studies have however been conducted, with fairly positive results. A study of 1,268 adults in Botswana found that stigmatising attitudes had lessened three years after the national programme providing universal access to treatment was introduced. The study concluded that although improving access to antiretroviral treatment may be a factor in reducing stigma, it does not eliminate stigma altogether and does not lessen the fear of stigma amongst HIV positive people.4

The fact that stigma remains in developed countries such as America, where treatment has been widely available for over a decade, also indicates that the relationship between HIV treatment and stigma is not straightforward. An estimated 27% of Americans would prefer not to work closely with a woman living with HIV5.



Stigma may also vary depending on the dominant transmission routes in the country or region. In sub-Saharan Africa, for example, heterosexual sex is the main route of infection, which means that AIDS-related stigma in this region is mainly focused on promiscuity and sex work.

"Because it is about sex, in my country they then automatically think you got it because you have been loose…you are not anything better than a prostitute… they don’t believe you didn’t get it any other way.”African woman in the UK



This woman’s experience reveals the multi-layered nature of stigma. Within her quote she reveals being stigmatised but perhaps unknowingly accepting of the stigma against infected sex workers.

In Western countries where injecting drug use and sex between men have been the most common sources of infection, it is these behaviours that are highly stigmatised.

Women with HIV or AIDS may be treated very differently from men in some societies where they are economically, culturally and socially disadvantaged. They are sometimes mistakenly perceived to be the main transmitters of sexually transmitted diseases (STDs). Men are more likely than women to be 'excused' for the behaviour that resulted in their infection.

"Even a married woman who has been infected by her husband will be accused by her in-laws… In such a male-dominated society no-one ever accepts that the man is actually the one who did something wrong… It is even harder on women since it is seen as a fair result of their sexual misbehaviour."HIV-positive woman, Lebanon



The effects of stigma


"The epidemic of fear, stigmatization and discrimination has undermined the ability of individuals, families and societies to protect themselves and provide support and reassurance to those affected. This hinders, in no small way, efforts at stemming the epidemic. It complicates decisions about testing, disclosure of status, and ability to negotiate prevention behaviours, including use of family planning services."





AIDS-related stigma has had a profound effect on the epidemic’s course. The WHO cites fear of stigma and discrimination as the main reason why people are reluctant to be tested, to disclose HIV status or to take antiretroviral drugs.9 One study found that participants who reported high levels of stigma were more than four times more likely to report poor access to care.10 These factors all contribute to the expansion of the epidemic (as a reluctance to determine HIV status or to discuss or practice safe sex means that people are more likely to infect others) and a higher number of AIDS-related deaths. An unwillingness to take an HIV test means that more people are diagnosed late, when the virus has already progressed to AIDS, making treatment less effective and causing early death.

The widespread fear of stigma is held accountable for the relatively low uptake of prevention of mother-to-child transmission (PMTCT) programmes in countries where treatment is free. In the case of Botswana, for example, despite the fact that the service is available at every antenatal centre in the country, only 26% of pregnant women availed themselves of the opportunity to protect their unborn children. Over half refused to take a test, and nearly half of those who tested positive did not go on to accept treatment

"I am afraid of giving my disease to my family members—especially my youngest brother who is so small. It would be so pitiful if he got the disease. I am aware that I have the disease so I do not touch him—I talk with him only. I don’t hold him in my arms now." - Woman in Vietnam



Self-stigma and fear of a negative community reaction can hinder efforts to address the AIDS epidemic by perpetuating the wall of silence and shame surrounding the epidemic.

Stigma also exacerbates problems faced by children orphaned by AIDS. AIDS orphans may encounter hostility from their extended families and community, and may be rejected, denied access to schooling and health care, and left to fend for themselves.


Types of HIV/AIDS-related stigma and discrimination


AIDS-related stigma can lead to discrimination such as negative treatment and denied opportunities on the basis of their HIV status. This discrimination can occur at all levels of a person's daily life, for example, when they wish to travel, use healthcare facilities or seek employment.
Government

A country’s laws, rules and policies regarding HIV can have a significant effect on the lives of people living with the virus. Discriminatory practices can alienate and ostracise people living with HIV, reinforcing the stigma surrounding the disease.



In 2008, UNAIDS reported that 67% of countries now have some form of legislation in place to protect people living with HIV from discrimination14. However, Ban Ki-moon, Secretary-General of the United Nations, believes that ‘almost all permit at least some form of discrimination’.15

There are many ways that governments can actively discriminate against people or communities with (or suspected of having) HIV/AIDS. Many of these laws have been justified on the grounds that the disease poses a public health risk. Below are some examples of government level stigma and discrimination against people living with HIV/AIDS:

President Museveni of Uganda supports the national policy of dismissing or not promoting members of the armed forces who test HIV positive.16
The Chinese government advocates compulsory HIV testing for any Chinese citizen who has been living outside of the country for more than a year.17
The UK legal system can prosecute individuals who pass the virus to somebody else, even if they did so without intent.

Healthcare

In healthcare settings people with HIV can experience stigma and discrimination such as being refused medicines or access to facilities, receiving HIV testing without consent, and a lack of confidentiality. Such responses are often fuelled by ignorance of HIV transmission routes amongst doctors, midwives, nurses and hospital staff. That medical staff should perhaps have a better understanding of HIV makes discrimination in healthcare settings all the more damaging.

Lack of confidentiality has been repeatedly mentioned as a particular problem in health care settings. Many people living with HIV/AIDS do not get to choose how, when and to whom to disclose their HIV status. Studies by the WHO in India, Indonesia, the Philippines and Thailand found that 34% of respondents reported breaches of confidentiality by health workers.

Doctors in healthcare setting in resource-poor areas with limited or no drugs have reported a frustration with the lack of options for treating people with HIV/AIDS, who were seen as 'doomed' to die.20 This frustration may mean that AIDS patients are not prioritised or are actively discriminated against. Fear of exposure to HIV as a result of lack of protective equipment is another factor fuelling discrimination among doctors and nurses in under-resourced clinics and hospitals.




Stigma and discrimination in healthcare settings are not confined to developing countries. Below an HIV positive woman in London, UK tells of her experience with an NHS dentist:

“I have a dental problem and I go to this clinic, and I go there, two maybe three times. So eventually I told them about my condition. They explained that I would have to be the last appointment of the day. I have been to that room, and sat on that chair, and the same doctor examined me as before, but after I told them I was HIV positive. So I went for the last appointment of the day last week, they covered the chair, the light, the doctors were wearing three pairs of gloves…”



A review of research into stigma in health care settings advocated a multi-pronged approach to tackling it, requiring action on the individual, environmental and policy levels. Health care workers need to be made aware of the negative effect that stigma can have on the quality of care patients receive; they should have accurate information about the risk of HIV infection, the misperception of which can lead to stigmatising actions; and they should also be encouraged to not associate HIV with immoral behaviour. Facilities should have sufficient equipment and information so health workers can carry out universal precautions and prevent exposure to HIV.22

Policies within health care settings can also be effective in reducing stigma. Such programmes would involve participatory methods like role play and group discussion, as well as training on stigma and universal precautions. The involvement of people living with HIV could lead to a greater understanding of patients’ needs and the negative effect of stigma.


Employment

In the workplace, people living with HIV may suffer stigma from their co-workers and employers, such as social isolation and ridicule, or experience discriminatory practices, such as termination or refusal of employment. Fear of an employer’s reaction can cause a person living with HIV anxiety:

"It is always in the back of your mind, if I get a job, should I tell my employer about my HIV status? There is a fear of how they will react to it. It may cost you your job, it may make you so uncomfortable it changes relationships. Yet you would want to be able to explain about why you are absent, and going to the doctors.”HIV positive woman UK



“Though we do not have a policy so far, I can say that if at the time of recruitment there is a person with HIV, I will not take him. I'll certainly not buy a problem for the company. I see recruitment as a buying-selling relationship. If I don't find the product attractive, I'll not buy it.”A Head of Human Resource Development, India




Restrictions on travel and stay

Many countries have laws that restrict the entry, stay and residence of people living with HIV. Almost sixty countries, territories and areas have restrictions that specifically apply to HIV or AIDS based on positive status alone. This number does not include those countries where the legislation uses language such as "contagious" or "transmissible diseases" if HIV and AIDS are not mentioned specifically.

UNAIDS has identified around a dozen restrictions applying to HIV-positive people regarding entry, stay and residence.

Five require a declaration of HIV status which can result in HIV-positive people being denied entry or stay, or the need for discretionary approval. Until the 4th of January 2010 the United States restricted all HIV positive people from entering the country, whether they were on holiday or visiting on a longer-term basis.26

Twenty-two countries including Egypt, Russia, and South Korea deport foreigners based on their positive status alone.

Some countries have policies that could violate confidentiality of status if, for example, a stamp is required on a waiver or passport in order to gain entry or stay. Students living with HIV are barred from applying to study in certain countries including Malaysia and Syria.

A database maintained by the German AIDS Federation, the European AIDS Treatment Group and the International AIDS Society, presents updated information on such travel restrictions (if there are any) in 196 countries: www.hivtravel.org.

This information is also presented in a UNAIDS document which UN country members were asked to verify: ‘Mapping of restrictions on the entry, stay and residence of people living with HIV’.

Deportation of people living with HIV has potentially life threatening consequences if they have been taking antiretroviral drugs. If they are deported to a country that has limited treatment provision, this could lead to drug resistance and death. Alternatively, people living with HIV may face deportation to a country where they would be subject to even further discrimination. As Human Rights Watch has pointed out, this practice could contravene international law.

Community

Community level stigma and discrimination towards people living with HIV/AIDS is found all over the world. A community’s reaction to somebody living with HIV/AIDS can have a huge effect on that person’s life. If the reaction is hostile a person may be ostracised and discriminated against and may be forced to leave their home, or change their daily activities such as shopping, socialising or schooling.

"At first relations with the local school were wonderful and Michael thrived there. Only the head teacher and Michael's personal class assistant knew of his illness… Then someone broke the confidentiality and told a parent that Michael had AIDS. That parent, of course, told all the others. This caused such panic and hostility that we were forced to move out of the area. Michael was no longer welcome at the school. Other children were not allowed to play with him - instead they jeered and taunted him cruelly. One day a local mother started screaming at us to keep him away from her children and shouting that he should have been put down at birth…. Ignorance about HIV means that people are frightened. And frightened people do not behave rationally. We could well be driven out of our home yet again.”British woman describing the experience of her foster son in a British school





Community-level stigma and discrimination can manifest as ostracism, rejection and verbal and physical abuse. It has even extended to murder. AIDS related murders have been reported in countries as diverse as Brazil, Colombia, Ethiopia, India, South Africa and Thailand. In December 1998, Gugu Dhlamini was stoned and beaten to death by neighbours in her township near Durban, South Africa, after speaking openly on World AIDS Day about her HIV status.

Family

In the majority of developing countries families are the primary caregivers when somebody falls ill. There is clear evidence that families play an important role in providing support and care for people living with HIV and AIDS. However, not all family responses are positive. HIV-infected members of the family can find themselves stigmatised and discriminated against within the home. There is concern that women and non-heterosexual family members are more likely than children and men to be mistreated.

“When I was in hospital, my father came once. Then he shouted that I had AIDS. Everyone could hear. He said: this is AIDS, she’s a victim. With my brother and his wife I wasn’t allowed to eat from the same plates, I got a plastic cup and plates and I had to sleep in the kitchen. I was not even allowed to play with the kids.”HIV-positive woman, Zimbabwe



A Dutch survey of people living with HIV found that stigma in family settings - in particular avoidance, exaggerated kindness and being told to conceal one's status - was a significant predictor of psychological distress. This was believed to be due to the absence of unconditional love and support, which families are expected to provide.


The way forward


HIV-related stigma and discrimination severely hamper efforts to effectively fight the HIV and AIDS epidemic. Fear of discrimination often prevents people from seeking treatment for AIDS or from admitting their HIV status publicly. People with (or suspected of having) HIV may be turned away from healthcare services and employment, or refused entry to a foreign country. In some cases, they may be forced from home by their families and rejected by their friends and colleagues. The stigma attached to HIV/AIDS can extend to the next generation, placing an emotional burden on those left behind.

Denial goes hand in hand with discrimination, with many people continuing to deny that HIV exists in their communities. Today, HIV/AIDS threatens the welfare and wellbeing of people throughout the world. At the end of the 2008, 33 million people were living with HIV with two million having died from AIDS-related illness that year. Combating stigma and discrimination against people who are affected by HIV/AIDS is a vital ingredient for preventing and controlling the global epidemic.

So how can progress be made in overcoming this stigma and discrimination? How can we change people's attitudes to AIDS? A certain amount can be achieved through the legal process. In some countries people living with HIV lack knowledge of their rights in society. They need to be educated, so they are able to challenge the discrimination, stigma and denial that they encounter. Institutional and other monitoring mechanisms can enforce the rights of people with HIV and provide powerful means of mitigating the worst effects of discrimination and stigma.

"We can fight stigma. Enlightened laws and policies are key. But it begins with openness, the courage to speak out. Schools should teach respect and understanding. Religious leaders should preach tolerance. The media should condemn prejudice and use its influence to advance social change, from securing legal protections to ensuring access to health care."Ban Ki-moon, Secretary-General of the United Nations



However, no policy or law can alone combat HIV/AIDS related discrimination. Stigma and discrimination will continue to exist so long as societies as a whole have a poor understanding of HIV and AIDS and the pain and suffering caused by negative attitudes and discriminatory practices. The fear and prejudice that lie at the core of the HIV/AIDS discrimination need to be tackled at the community and national levels, with AIDS education playing a crucial role. A more enabling environment needs to be created to increase the visibility of people with HIV/AIDS as a 'normal' part of any society. The presence of treatment makes this task easier; where there is hope, people are less afraid of AIDS; they are more willing to be tested for HIV, to disclose their status, and to seek care if necessary. In the future, the task is to confront the fear-based messages and biased social attitudes, in order to reduce the discrimination and stigma of people living with HIV and AIDS.



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