HIV/AIDS/MTCT: Stigma and discrimination

HIV/AIDS/MTCTStigma and DiscriminationField Experiences and Research from Africa, Asia & UkrainePAHO/UNICEF/WHO MeetingCuernavaca, MEXICOFebruary 5, 2002 Programme Communication, UNICEF New York Shari Cohen

HIV/AIDS/MTCT:Stigma and discrimination Based on UNICEF PMTCT communication experiences and qualitative research on HIV/AIDS/MTCT by *The Panos Global Institute on HIV/AIDS This presentation is the combined results of UNICEF’s global field experience with PMTCT communication over 20 months & a pilot study on stigma & discrimination carried out by Panos Institute The study was conducted in 2001 and utilized FGDs & key informant interviews *All quotes are from Panos research in Zambia, Burkina Faso, India & Ukraine Programme Communication, UNICEF New York Shari Cohen

Definitions • Stigma: • An attribute that is significantly discrediting (Goffman 1963) • An attribute used to set the affected person or groups apart from normalised social order, implying their devaluation • (Gilmore & Somerville 1994) • Discrimination: • Is the different and most commonly negative treatment of an individual or group because of one or more factors attributed to them Programme Communication, UNICEF New York Shari Cohen

Community Voices: • “Certain people are part of the problem…why do we give them sympathy? ...We know where the problem is. It lies with these girls flirting freely, spreading HIV…We should do away with human rights for such women…Arab states’ rules on women seem to be discriminatory but at least they control sexuality” • -Zambia- • “HIV/AIDS is a sinners disease…it affects people forsaken by God, whose major concern is pleasure of the flesh” • -Burkina Faso elders- Programme Communication, UNICEF New York Shari Cohen

Community Voices: • “This is a disease of unfaithfulness, of refusing God, of sinners & sexual wandering. It is a curse from God” • -Burkina Faso clinic user- • “HIV/AIDS is only transmitted through reckless behaviour” • -Key informant, Lusaka- • “…You only get AIDS if you sleep around” • -Zambian gov’t official- • “Sex workers & drug users are perverted elements of society…HIV/AIDS is a disease of the depraved” • -Ukraine- Programme Communication, UNICEF New York Shari Cohen

PLWHAs Speak-Out: • “I was told not to burn my husband on the funeral pyre..the smoke would pollute the air” • -Woman, India- • “They say we are immoral, that AIDS is hell on earth, that we are disciples of Satan” • -Man, Burkina Faso- • “It is easier to say you are bewitched since AIDS comes through misbehaviour…with AIDS your secret is exposed & then you are exposed to negativity” • -Man, Zambia- Programme Communication, UNICEF New York Shari Cohen

Common Themes • “AIDS is not just a disease, it’s a sanitary inspector which helps rid society of people who have led an immoral way of life” • -National Press, Kiev, Ukraine- Programme Communication, UNICEF New York Shari Cohen

Common Themes • Despite vastly different cultures, experiences & research have identified similar aspects of discrimination & stigma throughout the regions of West, East & Southern Africa, South & SE Asia & Ukraine, including: • the assumption that PLWHAs are members of a pre-determined group, regardless of whether they are or not, thereby enabling denial of the individual & general public’s vulnerability to infection • the most marginalised and excluded groups in many societies: drug users, sex workers, and men who have sex with men, bear the brunt of stigma & discrimination • stigma related to HIV/AIDS is often layered on pre-existing stigmas of sexual conduct & drug use, thereby, playing into & reinforcing existing social inequalities linked to power & domination within communities • derogatory name-calling Programme Communication, UNICEF New York Shari Cohen

Common Themes • In many countries, derogatory, stigmatising terms & slang applied to people with, or suspected of having, HIV/AIDS included: • promiscuous • men who have had sex with many women • prostitutes • those with dirty blood • those who have many affairs • the diseased • worms from the gutter • depraved • perverted • immoral • creatures or animals • sinners • those forsaken by God Programme Communication, UNICEF New York Shari Cohen

Stigma & Health Care • “Before going to the Gulf for a job, I was required to test my blood. When I went to collect the report, the lady ignored me for 30 minutes, asking me to wait aside. When people standing behind me collected their reports I demanded mine too. She shouted loudly, ‘You have AIDS, now stand aside!’ Can you imagine what happened to me? There were 25 people who just kept staring at me…” • -Man, India- Programme Communication, UNICEF New York Shari Cohen

Stigma & Health Care • “The nurse said ‘there is no need for you to have medicine because you are going to die’ ” • -Woman, Zambia- • “I was refused admission for delivery because of my HIV status. Later, when my child became ill, and the doctor learned of the status he told me to take him home as there was no treatment” • -Woman, India- Programme Communication, UNICEF New York Shari Cohen

Stigma & Health Care • The most extreme forms of stigmatisation being reported are in health care settings. This includes denial of drugs & treatment; being left in the corridor; being dealt with last; being labelled or called names; being subjected to degrading treatment; & breaches of confidentiality • Some service providers admitted that sometimes HIV/AIDS patients were not given the same services because the doctors know they are going to die, so they spend less time on them • Negative & judgmental attitudes from doctors & nurses generate anxiety & fear among HIV-positive people, often forcing PLWHAs to remain silent, fearing even worse treatment by family and friends Programme Communication, UNICEF New York Shari Cohen

Stigma & Community • “If a pregnant woman is sick and her baby is sick and dies before 3 months, then we know she is infected - This is our HIV test!” • -Male rural dweller, Zambia- • “There is stigma everywhere - in the church, at home, in the hospital.” • -PLWHA, Zambia- • “In one community, the village got together to buy train tickets & forced the entire family to leave for Mumbai” • -India- Programme Communication, UNICEF New York Shari Cohen

Stigma & Community • Both the study & field experience have shown that community plays a key role in either supporting HIV-affected families, or in most cases, in creating an environment of stigma & discrimination towards the HIV-affected • People frequently reported putting distance between themselves & those suspected of having HIV/AIDS • Not sharing food & drinking utensils, not shaking hands or sitting next to someone on the bus were all common rejections acted out by fearful communities • People with HIV/AIDS were at times openly condemned for being irresponsible & were publicly ridiculed • Most rural communities had fragmented or inaccurate knowledge & information on HIV/AIDS/MTCT Programme Communication, UNICEF New York Shari Cohen

Stigma & Family • “Once they know…they isolate you. You will be eating alone on your plate, using your own cup & spoon. Sometimes a kid by accident touches your cup or spoon and people around will scream ‘Give it to the owner! Don’t you know you can get AIDS from this person?!” • -Zambia- Programme Communication, UNICEF New York Shari Cohen

Stigma & Family • “When I tested positive, the doctors advised my husband to be tested but he refused. Everyone blamed me, calling me names, that I was a woman of loose morals & bad character; that I brought shame & bad luck on the family. Later, they threw me out of the house. My mother brought me home but my brother’s wife left the house on knowing I had HIV; so my family rented a room & I live there with my children” • -Woman, India- Programme Communication, UNICEF New York Shari Cohen

Stigma & Family • In the household setting, stigma is manifested in the form of verbal abuse, rejection, eviction & imposed restrictions on a person. • People with HIV/AIDS are subjected to blame, anger, denial, & withdrawal of treatment & care, sometimes leading to blatant neglect • Women carry the burden of care for the sick & families frequently carry a double burden - caring for the sick and maintaining secrecy to avoid community backlash & isolation • Some PLWHAs reported their biggest worry is that they will die before their children & their parents, leaving their children & their parents devastated, with nobody to care for them Programme Communication, UNICEF New York Shari Cohen

Women & Stigma • “A woman will never decide to do the testing. If she finds herself HIV-positive she is signing three deaths: psychological death, social death & physical death. • Don’t you think that is a lot?” • -Woman, Burkina Faso- Programme Communication, UNICEF New York Shari Cohen

Women & Stigma • The rights & choices of HIV-positive women are repeatedly ignored or denied • Policy frameworks to support their rights are often weak; and the needs of HIV-positive women are almost always secondary to the rest of the community • Stigma was reported everywhere to be more directed at women • Stigma surrounding MTCT prevents women from accepting testing and negatively impacts their quality of family life • In many cases, once a woman is diagnosed as HIV-positive, she faces rebuke or condemnation for wanting a child, and often is denied the right to make her own reproductive choices Programme Communication, UNICEF New York Shari Cohen

Women & Stigma • The “M” in PMTCT can foster incorrect perceptions that a women is solely at fault in transmitting HIV to her baby In some cases this enables the partner & family to refuse responsibility in providing care & support to mother & child • Many communities assume HIV-positive women must be promiscuous, making it impossible for many women to remain in their communities where they may have better access to home-based care & support, pushing them into urban poverty & often into sex work • In some communities, women who do not breastfeed their child are now assumed to be HIV-positive Programme Communication, UNICEF New York Shari Cohen

Stigma & the Workplace • “My employer told me I have a problem and I have to go back to India. Police were searching for me, I was caught and put in jail for two hours. I was given a third-class air ticket and sent back” • -India- • “Mental abuse - people need not say anything - you just feel it [discrimination]” • -Zambia- Programme Communication, UNICEF New York Shari Cohen

Stigma & the Workplace • Most HIV-positive people do not disclose their status at their workplace for fear of rejection by colleagues, and loss of their jobs • Even in places where there is legislation protecting HIV-positive workers, there is limited enforcement or legal recourse for those subjected to discrimination • Fear of workplace stigma is greatest in men • In some workplaces HIV-positive people are ostracised, isolated & gossiped about • Suspicions of HIV infection also prevents access to training & promotion • Deciding to take an HIV test is often seen as admission of infidelity or promiscuity Programme Communication, UNICEF New York Shari Cohen

Causes & Impact • Causes: • Misinformation about basic HIV/AIDS transmission & prevention creates fears, which in turn results in stigma • Communities see mass media as largely responsible for both creating & reinforcing stigma, highlighting death & high-risk groups • In clinic settings poor, unsafe working conditions & a fear of infection are cited by health workers as contributing to their often stigmatising behaviour towards PLWHAs • Other health workers identify their negative behaviours as the result of their inability to understand & manage HIV/AIDS. They see no remedy or solution to the despair surrounding the disease & many feel they don’t have the psychological resources to cope with somebody whose death is inevitable Programme Communication, UNICEF New York Shari Cohen

Causes & Impact • Impact: • Reduction of disclosure was identified, especially among men • Fear of stigmatisation has pushed the epidemic underground in some places, making people afraid of testing & mistrustful of the ability of health workers to keep results confidential • PLWHAs reported the main impact of stigma on themselves is isolation & social exclusion. All HIV-positive participants in the study said they mixed with only HIV-positive people or professionals from HIV/AIDS organisations. They experience constant fear of being discovered & enduring further isolation, remorse & guilt • Individual or family’s loss of children, property, housing, jobs • Eviction from family and/or community Programme Communication, UNICEF New York Shari Cohen

Recommendations to Address Stigma & Discrimination • Consider shifting the terminology “PMTCT” to more inclusive terms such as “PTCT - parent to child transmission”, emphasising the responsibility of both parents in HIV transmission • Increase efforts to look at HIV/AIDS holistically, as a societal issue, encompassing the broader environmental & contextual factors that contribute to HIV transmission • Make more effort to research & understand community norms, values & practices related to PMTCT issues by beginning communication with rapid, participatory research & ensuring that results are incorporated into program design • Increase participation of men, youth & PLWHAs Programme Communication, UNICEF New York Shari Cohen

Recommendations to Address Stigma & Discrimination • Assist communities in identifying realistic, feasible coping strategies for HIV/AIDS • Simple community dialogue tools have been developed & field-tested, proving that easy-to-use participatory tools can greatly assist & enhance community capacity to identify ways in which they can begin addressing HIV/AIDS & stigma, thus creating more caring & supportive communities • Increase correct understanding of basic HIV/AIDS transmission & prevention facts for general population, health care workers & teachers by promoting mutually reinforcing national & community-based communication initiatives • Address health worker fears & ensure understanding of, and access to, universal precaution supplies for all health workers Programme Communication, UNICEF New York Shari Cohen

Recommendations to Address Stigma & Discrimination • Develop clear policies on confidentiality & mechanisms for their effective implementation • Improve community-based self-help services for PLWHAs • Strengthen legal frameworks at local, national & international levels to protect the human rights of PLWHAs (particularly HIV-positive women) & HIV-affected families • Empower communities to understand & use policy and laws to obtain the care & support they require • Promote & support the rapid completion of ARV trials & increase accessibility to affordable treatment • Support legislation against mandatory HIV testing & testing without consent Programme Communication, UNICEF New York Shari Cohen

HIV/AIDS/MTCT: Stigma and discrimination