SIERRA LEONE: Stigma and fear prevent uptake of vital services

By, Emily Bell, IRIN PlusNews, October 30, 2006

FREETOWN, 26 October (PLUSNEWS) - Stigma against HIV/AIDS and fear of learning one's status are slowing the uptake of free testing and treatment services in Sierra Leone.

The focus of the national response so far has been on increasing people's awareness of the basic facts of HIV/AIDS. But the concept of voluntarily discovering one's HIV status is largely alien, despite the availability of free testing at all district hospitals and a number of sites in the capital, Freetown. Most people only learn what their HIV status is after being referred for testing by their doctor.

According to a national HIV seroprevalence survey published this year, an estimated 1.5 percent of the country's roughly five million people are HIV positive.

Widespread stigma is also preventing those who know they are positive from accessing treatment services and seeking support from family and friends.

Antiretroviral (ARV) drugs are available free of charge in Sierra Leone, but the government's treatment programme is unlikely to meet its target of reaching 2,000 people by the end of 2006. Currently, only 1,178 people are receiving ARVs at public health facilities.

Arnold Macauley, acting director of the HIV/AIDS Care and Support Association (HACSA), recalled receiving his positive test result in the company of his HIV-negative fiancée in 2005 and being told by the counsellor that "this is the disease you get from being promiscuous".

The misconception that HIV can only be contracted through promiscuous behaviour or illicit sex is one of many reasons the disease is stigmatised in Sierra Leone, he said. Other mistaken beliefs include the idea that HIV is linked to bestiality or is only spread by homosexual acts.

According to Macauley, the media has not helped to dispel myths about how the virus is transmitted or the view that people living with HIV are a "living curse". As a result, self-stigmatisation is a significant problem for people living with the virus and the focus of one of HACSA's main interventions. Through skills training and confidence building, the organisation encourages positive living for infected people, even down to simply taking pride in their physical appearance.

Mariama is one of five counsellors at Connaught Hospital in central Freetown who see between 20 and 25 clients a day, most of them medical referrals.

She recalled meeting a woman suffering from an AIDS-related illness during her first nursing job in 2003. The words, "HIV POSITIVE, BE CAREFUL" were written in bold on her notes. Mariama took on the case when she realised that nobody else was prepared to, only to be challenged by her colleagues for doing so.

"It was then I decided to go into HIV nursing," she said. "The most stressful side of the job is when somebody who is young and healthy turns out to be positive, or if there is a discordant couple [one positive and one negative], although we are trained to prepare everybody for either outcome, and not to assume anything when a client walks in the door."

But the general public remains unconvinced and mistrustful of the benefits of testing. Many suspect the reliability of the results or fear they will be made public.

Dr Brima Kargbo, director of the National AIDS Secretariat (NAS), emphasised that Sierra Leone's HIV/AIDS programme was still relatively new and learning from the experiences of other countries. He felt that people would only learn to trust the system if they actually went for an HIV test.

"We are trying to encourage more agencies to become involved in social marketing of HIV testing," he said. "And if we can secure further funding from the World Bank, we would like to see a model of door-to-door mobilisation, as accessibility to testing sites is still a major barrier in some districts."

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Source: http://www.plusnews.org/aidsreport.asp?reportid=6499

SAO TOME AND PRINCIPE: Stigma hobbles HIV/AIDS fight

By, Integrated Regional Information Networks, October 30, 2006

SAO TOME, 25 October (PLUSNEWS) - When Maria (not her real name) took the brave step of speaking to the media in Sao Tome about her HIV-positive status, she had no idea what she was letting herself in for.

Although she had her back turned to the cameras, her voice was not disguised and it did not take long for people in her community to identify her. "After that, everyone knew it was me - at least, they thought it was me," she told PlusNews.

The stigma attached to being HIV positive in the tiny twin-island state of Sao Tome and Principe is huge. No one living with the virus has so far gone public about his or her status, and health workers say that discrimination presents the biggest challenge to curbing the spread of the epidemic.

"This is our biggest problem at the moment. If we don't start accepting that AIDS is a normal disease like others, we are going to make things even harder," said Dr Alzira do Rosario, coordinator of Sao Tome's national AIDS programme.

Do Rosario has to deliver antiretrovirals (ARVs) to some of her patients, who refuse to fetch them from the hospital for fear of being identified and marginalised.

"People who are infected don't want to show their face, not even to visit a doctor. But if they don't, they can get to the terminal phase of the illness, and by then it's too late. It also makes it harder to educate people and get people to change their behaviour," she said.

Television and radio spots about HIV/AIDS are broadcast daily in Sao Tome, where the rate of HIV infection is an estimated 1.5 percent, but the campaign has so far done little to change attitudes towards people living with the virus.

"The government should arrange an area for them [HIV-positive people], where they can live apart from the rest of society," said a 27-year-old man from Sao Tome, the capital. "If they are not going to be apart, their faces should be shown on television so that everyone else knows not to get involved with them. Lots of people who are HIV positive are contaminating others intentionally."

Others say people living with HIV should have their faces stamped so they can be easily identified, and should not be allowed to work.

Maria lost her job as a domestic worker when her boss heard rumours that she was HIV positive; she is struggling to bring up her two children, one of whom is also infected.

"Someone told my boss that I had AIDS, and that I could make him sick by infecting his razor or something," she said. "He went on holiday to Portugal and when he came back he told me he didn't need a maid anymore. He didn't say anything else or mention HIV."

Medicos do Mundo, a nongovernmental organisation providing medical relief in Sao Tome, offers free, anonymous testing and disseminates information about the disease. Its coordinator for the two islands, Manuela Castro, told PlusNews that anti-AIDS messages had been slow in getting through to the population of about 170,000.

"There is a lack of information and a lot of misinformation going around," she said. "People still believe that you can catch HIV by touching a person, being stung by a mosquito or using the same toilet as someone who is HIV positive."

There is no organisation to support people living with the disease. Do Rosario has tried repeatedly to bring her HIV-positive patients together but, with the exception of Maria, no one ever turns up.

Maria and the father of her child split up after she and her son tested positive for HIV. She told her mother about her test results, but they have not discussed it since. Today, her only support comes from a friend who lives on the other side of the island, whom she visits occasionally, and Do Rosario.

"I go to discos, I have a normal life, I have friends. I don't feel sad; I am very strong, very concentrated. But I do feel very lonely," Maria said. "When I feel down, I go and speak to my best friend. She lives very far away, but from time to time I go and talk to her to get it off my chest. She gives me strength."

Maria's HIV-positive son is almost ten and has been on ARVs for several years, but he does not go to school and suffers verbal abuse in the area where he lives - neighbours shout that he has AIDS and tell him to stay out of their yards.

Maria feels trapped by her situation and wants to leave Sao Tome for Angola, where she thinks life will be easier.

"I have family in Luanda. They don't know anything about me and I have heard that there, if you are HIV positive, there is no problem," she said. "Here, I'm never going to be able to do anything, I can't take a single step."

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Source: http://www.plusnews.org/AIDSreport.asp?ReportID=6491

Uganda: Let's Study Stigma No More

INCREASING DISCRIMINATION against teachers infected with HIV, the virus that causes Aids, in Uganda is a reversal of victories registered against the disease.

A teacher discussing this development with The EastAfrican recently, summed up the gravity of the matter, "Sometimes teachers who die as a result of HIV/Aids do not get their terminal benefits. Can you tell me why?"

Elinah Kasubo, one of the few primary school teachers that have gone public about their HIV status in Uganda, suggests that the government should create a scheme for HIV/Aids affected teachers to assist the relatives they leave behind.

In an interview with The EastAfrican conducted in a quiet classroom, where she was preparing reports from the end of term at Naguru Katale Primary School in Kampala, Kasubo expresses displeasure at the time wasted when patients go to pick up antiretroviral (ARV) drugs from government hospitals.

She said, "It takes a whole day lining up for ARVs in government hospitals because there are many of us. When you miss out, you are asked to come back the following day. Headteachers in government schools may allow you to take time off to go for treatment, but that is not the case with private schools."

She says she has experienced the horrors of being stigmatised since she came to know that she had the virus in 2000.

"Stigma is something than can shorten the life of a person affected by HIV/Aids," she says.

Out of her own experience she advises, "Sometimes it helps you to deal with stigma when you interact with others with the same problem. But if you sit at home and start lamenting it, it eats you up. Through interaction you learn of others who have far bigger problems than yourself."

The 35-year-old trained teacher revealed that it was not easy for her to come to terms with the fact that she was a victim. "I couldn't cope, but eventually I had to accept it and learnt to live with it. I learnt that I had HIV/Aids after a test following an on-and-off fever. Counselling thereafter enabled me to live positively."

Kasubo, who has been on ARVs since 2005 and gets regular treatment at the Home Care Unit in Mengo Hospital, says it is difficult to persuade a man to go for a test.

A teacher since 1992, Kasubo says many teachers are reluctant to come out into the open about their HIV status because their immediate bosses may not understand.

The stigma caused by HIV/Aids escalates teacher absenteeism as they want to be away from school whenever they have no lessons. This is meant to reduce their contact time with fellow teachers and students, whom they perceive to be pointing fingers at them.

A 2005 survey titled, HIV/Aids and Teacher Absenteeism: Dynamics in the School Environment commissioned and funded by Action Aid International Uganda, says that while HIV positive teachers might be present at school, they often exhibit signs of constant worry.

Another form of stigmatisation related to teacher absenteeism is that because their job security is threatened by their condition, they have to strain to prove their ability to their bosses. "This is in a bid to save themselves from being retrenched or laid off," the report says.

Several focus group discussions with teachers and, in some cases, interviews with school administrators revealed that the manner in which managers handled absenteeism of HIV positive teachers was very stigmatising, says the report.

Teachers pointed out that harassment by school management kept teachers' morale low.

An unnamed male secondary school from Bushenyi District was quoted saying, "In one school I worked in, an HIV-positive teacher strained to work extra hard in order to impress the head teacher to avoid being laid off. One day he collapsed and died shortly after reaching hospital.

"In my school, teachers do not speak out, they don't disclose their status, they suffer silently for fear of victimisation," a female primary school teacher in Kampala said. "There have been at least three cases of teachers being laid off because of the headteacher found out, or may be suspected, that they were HIV-positive. This unfortunately happened even where the teachers were still strong enough to work."

"I know of at least three headteachers who recommended that their HIV positive teachers be transferred at a time they were bedridden, a Bushenyi district education officer revealed.

Among the numerous ways in which HIV/Aids has affected the education sector is through keeping a large number of teachers absent from work.

In some cases teachers through being differently affected or infected have been absent for more than two school terms, and yet have received little help to enable them to resume their duties. Coupled with this is the psychosocial effect that many teachers suffer from; while they may be physically present at school, and in classrooms, they are "spiritually absent."

"This has far reaching effects on the teachers, fellow teachers but perhaps most important, the learners who are the primary beneficiaries of the teacher's, service especially now as focus has been progressively shifting from quantity and physical access towards quality of education," the report observes.

Reacting to the Action Aid report the Assistant Commissioner for Personnel in the Ministry of Education, John Baptist Ssemakula, said, "The issue of stigma is something that has to be addressed over time because it is related to attitude change. It is not like switching a machine on and off. It requires enhanced and continuous sensitisation through clear and smooth provision of scientifically-proven information to demystify the conceptual minds of the public."

UGANDA NATIONAL TEACHERS Union secretary general Teopista Birungi said, "We are using this report to launch advocate campaigns to assist those teachers that have been infected and affected by HIV/Aids."

The Unesco Education Global Monitoring Report 2006 says that the HIV/Aids pandemic is the main cause of teacher shortages and absenteeism, especially in Africa.

"In the best-case scenario, Zambia, Tanzania and Kenya, would each have lost 600 teachers to HIV/Aids in 2005. In Mozambique, HIV/Aids-related teacher absenteeism is likely to have cost $3.3 million in 2005, plus $300,000 for additional teacher training," says the report.

A 2003 UN country team study suggested that further research should "highlight the indirect costs of the epidemic, such as those resulting from teachers being unable to teach, and human-hours being lost due to attending funerals, ensuring that employers make contingency plans to replace essential staff who are no longer able to function; and emphasise access to ARV drugs for treatment."

Women tend to have more access to medical support because there are organisations targeting them, says the report.

In terms of gender, the causes of absenteeism were found to be generally the same for both male and female teachers.

There were, however, remarkable differences that arise out of the culturally assigned male and female roles.

This had a bigger impact on female teachers in as far as HIV/Aids related causes of absenteeism were concerned, the Action Aid study says.

The study was conducted in the three districts of Bushenyi, Katakwi and Kampala, representing the Western, Eastern and Central regions. The respondents comprised both primary and post-primary male and female teachers, students and centre co-ordinating tutors. The report showed that teacher absenteeism was prevalent in both primary and post-primary educational institutions.


Source: The East African (Nairobi), Bamuturaki Musinguzi, October 17, 2006

http://allafrica.com/stories/200610170191.html

Personal Perspective: Stigma in Zambia

In my country, we look at AIDS in a traditional way. We have unrealistic beliefs -- when you have HIV they think it may be the ghost.
But I was in a dilemma. I was sick on and off for a long time. My wife was pregnant and tested negative but I kept asking myself, "Why am I always getting sick?" When I went to the hospital they told me I had TB, but after being treated I wasn't getting much better. I was afraid to be tested for AIDS because I was told, "If you have HIV, you are going to die." Then I decided I was thinking too much about the illness and I wanted to know what was the problem.

As to the stigma, it was bad. The church did a very bad thing to me: after I told the church leaders about my situation, the preacher spoke from the pulpit saying, "Some of you were doing bad things and now you are sick." I felt stigmatized -- everyone was distant with me. When I was with them they didn't talk, but they talked to others about me. I would walk by and they were quiet but as soon as I passed they would start speaking quickly and in low voices. Only one of the elders was supportive.

Our Vice Bishop died. When I had confided in him, he told me I was lazy. Then he ended up in bed because of his illness and was stigmatized by the same pastor who spoke about me from the pulpit. He had trusted the Bishop, but now he was stigmatizing him. It is a cycle.

I think there is some justice because nine of the people who shamed me are now dead, and they died quickly. I have found that people who shame others tend to die quicker. You find out they are sick and then they are dead. But I am still alive.

Traditional healers have also brought a lot of calamity. When some people come for testing, they say they were told by the traditional healers, "I have the medicine and I can't get the HIV. I can help you, too." We must send the message that people shouldn't mix traditional medicine and HIV meds. We must start a project to educate the traditional healers and the people in the communities who listen to them.

Before there was fear, because there were no drugs. So when you went for testing and found out you were positive, you knew you were going to die. Now the idea that the drugs must be taken for life gives a lot of fear to people. That's why other people don't want to take it. They also see people who take it and then die. I had seen many people who were very sick who seemed like they were going to die, but then they took the drugs and they didn't die. So I thought if I took it, I wouldn't die. That was my focal point. I wanted to live. At first I had problems adjusting, but now I have a good appetite and everything is normal. Now I look good and feel great.

I am trying to get my own income-generating work because a lot of jobs expose you to things that aren't healthy if you have problems with your immune system. I could get sick if I did one of those jobs.

My wife is now positive. She kept on being tested and now she is positive. She and I usually chat between ourselves to keep our emotions safe. For us, having enough food is the most important thing to our HIV status. It helps us to stay healthy and it helps us to avoid opportunistic infections because we are stronger. My wife's CD4 count is still high so she is not taking meds. When I first tested positive my CD4 count was 120. After they put me on medication it went up to 350.

A lot of people have the problem that when they are feeling good, they stop taking the medicine. I won't do that. Food, medication, and income generation are the three most important things for me and for most positive people.

Support groups encourage people who aren't tested. To help more people get tested we can prevent stigma by going from door to door educating people. People must understand the problem. It is just an infection which can be treated with medication. Seeing positive people who have declared their status and are healthy and productive, will lessen stigma.


Source: Noel Mukuka, The body, Fall 2006

Noel Mukaka is a former bricklayer who resides in the Bauleni Compound of Lusaka, Zambia.

http://www.thebody.com/cria/fall06/zambia_stigma.html?m172h

In China, Negative Attitudes Toward HIV-Infected People Are Associated with Risky Sexual Behavior

In China, migrants who hold stigmatizing beliefs about HIV-infected people have higher levels of sexual risk behaviors and lower levels of protective behaviors than other migrants.1 In a cross-sectional survey among sexually experienced young adults who had migrated from rural to urban areas, some 65% of respondents believed that HIV-infected people should be ostracized, forced out of their villages, distanced as friends, or deprived of educational or employment rights. Compared with other migrants, these migrants were more likely to have had an STI, multiple sex partners or commercial sex partners, and they were less likely to use condoms or to accept an HIV test.

In 2002, researchers gave anonymous, self-administered questionnaires to migrants aged 18–30 working in the cities of Beijing and Nanjing. Respondents rated their agreement with four statements pertaining to stigma against HIV-infected people: "HIV-infected people should be ostracized by their spouse and family members," "HIV-infected people should be forced to leave their villages," "I would not be able to maintain a normal relationship with my friends if they became infected with HIV" and "HIV-infected people should not have the same rights to education and employment as others." Respondents provided information about their migratory history; this information was converted to a mobility index (number of migratory cities divided by years of total migration), with a higher index indicating a higher level of mobility. They also answered questions testing their knowledge of HIV, with higher scores on a scale of 0–22 indicating greater knowledge, and questions about their risk and protective behaviors. Analyses were restricted to sexually experienced respondents.

Of the 2,153 migrants included in the study, slightly more than half were recruited from Nanjing. Their average age was about 25, and one-third were women. Nearly all were of Han ethnicity (97%) and had at least a middle school education (93%). Somewhat more than half (56%) were single. Half had been migrating for five or more years, and the majority (71%) had worked in at least two cities.

Overall, 65% of migrants agreed or strongly agreed with at least one of the four statements indicating stigma against people with HIV. More specifically, 24% agreed or strongly agreed with one statement, 21% with two, 12% with three and 8% with all four. Migrants who held stigmatizing beliefs had lower scores for HIV knowledge than those who did not hold any such beliefs (13.8 vs. 15.3).

In bivariate analyses, migrants with a high school education or a postsecondary school education had lower odds of holding any stigmatizing beliefs than did those with only a primary school education (odds ratios, 0.5 and 0.3, respectively). The odds were also reduced among migrants who had a monthly income greater than US$57 (0.6–0.7). In contrast, the odds of holding stigmatizing beliefs were higher among migrants who had a mobility index of 0.71–1.00 than among those who had an index of 0.06–0.30 (1.4). In addition, migrants who believed that it was highly likely that they would become infected with HIV had sharply higher odds than did those who believed that it was impossible (3.1).

The questions on sexual risk behaviors revealed that 7% of migrants had bought or sold sex in the past month, 10% had ever bought or sold sex and 13% had ever been told by a clinician that they had an STI. In terms of protective behaviors, 38% of migrants used condoms at least some of the time when they had sex, and 57% were willing to take an HIV test.

In an unadjusted model, compared with migrants who did not have any stigmatizing beliefs about HIV-infected people, those who did had elevated odds of having had an STI (odds ratio, 2.3), having had multiple sex partners in the past month (1.8) and having ever bought or sold sex (1.9). On the other hand, migrants who endorsed stigmatizing beliefs had lower odds of using condoms at least some of the time (0.6) and of being willing to take an HIV test (0.6).

The patterns were similar in a multiple logistic regression model that took the migrants' social, demographic and economic characteristics into account. Compared with migrants who did not hold any such beliefs, those who held 1–4 of them had roughly doubled odds of having had an STI (odds ratios, 1.7–2.0). Similarly, compared with migrants who held no stigmatizing beliefs, those who held 2–4 such beliefs were more likely to have ever had a commercial sex partner (1.7–2.0), and those who had 3–4 such beliefs were more likely to have had multiple sex partners in the past month (2.0). In contrast, migrants who held one or 3–4 stigmatizing beliefs had lower odds of using condoms than did those who held none (0.7 for each). Migrants who endorsed two or 3–4 of the beliefs were less likely to be willing to take an HIV test than those who endorsed none (0.5–0.6).

The observed association between stigmatizing beliefs and risky behaviors among Chinese migrants, the researchers assert, may reflect an attempt to reconcile the conflict they experience when they engage in behaviors that they know are unsafe and socially unacceptable. For example, the researchers write, individuals may seek to justify their risky behavior by blaming people with HIV while assuming that they themselves are not at risk, or they may endorse mainstream beliefs in an effort to blend in with others who do not engage in risky behaviors. The finding that a person's stigmatizing belief "is a potential barrier to HIV-related preventive practices highlights the difficulties and challenges in implementing behavioral interventions," the researchers conclude.—S. London

REFERENCE
1. Liu H et al., Relation of sexual risks and prevention practices with individuals' stigmatising beliefs towards HIV infected individuals: an exploratory study, Sexually Transmitted Infections, 2005, 81(6):511–516.


Source: S. London, International Family Planning Perspectives
Volume 32, Number 2, 2006

http://www.guttmacher.org/pubs/journals/3210406.html