Today in Ukraine an ordinary survey exploring public attitudes to people with HIV is unfeasible for the simple reason that it is impossible to select respondents who suffer from HIV. Sociologists have to make do with conducting interviews, focus groups, and in-depth interviews.
Recently experts at the Kyiv International Institute for Social Studies (KMIS) wanted to find out how HIV-infected individuals feel in our society; whether they encounter situations in which they are feared, scorned, or humiliated. Considering that every 70th resident of Ukraine is infected with HIV, what Natalia KHARCHENKO, the coordinator of the KMIS project “Evaluation of the Vulnerability of People Living with HIV in Ukraine,” told The Day “is everyone’s concern,” even if people are still unaware of this.
Why did you decide to focus on the problem of vulnerability of HIV-infected people? Is it such a topical issue in today’s society?
Every day people who are living with HIV or AIDS in Ukraine are exposed to a definite degree of pressure from society, which has psychological consequences for them (daily stress from having to conceal their condition, fears, etc.) and material ones (loss of employment, physical inability to work, and additional expenses to maintain their immunity). Some of their problems are connected with breaches of their right to confidentiality, fears that their children will be refused enrollment in daycare centers and schools, losing their jobs after their colleagues learn of their HIV status, and the “double stigmatization” suffered as a rule by people in so-called risk groups — drug addicts who use needles, homosexuals, and prostitutes.
Where was this study carried out?
It was part of a large-scale project headed by the United Nations Development Program, which also involved Russia, Georgia, Uzbekistan, and Turkey. Its goal was to analyze the degree of access that HIV-infected people have to education, employment, and health care, and to determine the obstacles preventing their complete integration into society.
In Ukraine, we carried out the study in Odesa, Mykolaiv oblast, Donetsk, Lviv, and Kyiv. Using in- depth interviews we questioned 35 HIV-infected individuals, including their parents and those who had contracted the virus by accident or in clinical conditions; and members of risk groups, including ex- convicts, injection addicts, prostitutes, and homosexuals. The study involved eleven experts and nine focus groups, among them government officials, physicians, social workers, schoolteachers, militia officers, employers, clergymen, and the colleagues, friends, and families of people with HIV.
The study also involved employees of AIDS and HIV centers because interviewing HIV-infected individuals without intermediaries who work with a given target group would be rather problematic: such individuals are extraordinarily reticent. We succeeded in persuading them to be as frank as possible, so very few people flatly refused to be interviewed. Instead, almost every respondent hoped that his participation would improve society’s attitude to its HIV-infected members and make their problems more understandable and real.
What were your conclusions after analyzing the respondents’ answers?
All told, our preliminary findings attest to a high degree of public knowledge about this disease and the risks involved. However, a kind of double standard has emerged in Ukraine: on the one hand, most respondents believe that people with HIV must feel support from others, while only a small part of the population is psychologically prepared to communicate on a personal basis and be in regular contact with HIV-infected people. Therefore, we focused on two aspects of the problem: the reasons behind the low level of tolerance toward these people and its manifestations within society.
A complex study was carried out in three basic institutional spheres: health care, education, and employment. We found out that over the past three to four years the situation with HIV patients’ access to health care has substantially improved, although a number of problems still exist. There are cases where medical workers display a hostile or fearful attitude to HIV- positive patients, or indifference, expecting or even demanding “unofficial payments.” In certain cases they refuse to provide medical help. Some respondents pointed to the lack of specialized medical institutions, especially AIDS centers, outside Kyiv and in regional centers. This complicates the issue of providing medical assistance to such people in rural areas.
HIV-infected children suffer the most. Today, segregation of HIV-positive children in government-run boarding schools is standard practice, and it can have a negative effect on these children’s development and care. At the same time, our study shows that most respondents (people with HIV and educators) support the idea of schooling HIV-positive children on equal terms with other pupils. The biggest problems in the sphere of education appear have to do with enrolment. As a rule, it is impossible to keep a child’s HIV-positive condition a secret because parents have to submit a medical certificate and inform the school’s medical staffer. Once the condition becomes known, the school administration starts erecting up hurdles to enrolling an HIV-positive child.
In addition, the disclosure of this condition may result in hostility and discrimination from teachers, parents, and pupils, especially in a small town. The main reason for the vulnerability of HIV-infected children or those whose parents have HIV in the sphere of education is lack of information about the risks involved in social contacts with them.
In other words, laws that are meant to regulate and guarantee opportunities for people with HIV to obtain a basic education are often violated. This problem is further exacerbated by the chaos in Ukrainian legislation: normative documents issued by various government bodies often lack coordination and are not duly registered with the judicial authorities. In addition, a large proportion of people with HIV lack information about their rights in the sphere of education.
Are there frequent cases of discrimination against employees with HIV?
Most respondents say they are regularly discriminated against and that their employment rights are frequently violated because employers often demand HIV— status certificates (this forces people to use fake certificates). The employers among our respondents noted that the main reason for this negative attitude is fear of contracting the disease from an HIV-positive colleague through a cut finger or other accident or incident. I must also point out the passive attitude of HIV-infected people to the issue of protecting their rights. As a rule, they are reluctant to pursue the matter in the courts and lawsuits are very rare.
As a result of our study, we came to the conclusion that the reasons for such an intolerant attitude to HIV-infected people in Ukraine is people’s fears, prejudices, lack of information, and false stereotypes concerning how HIV is spread. Our findings show that observance of the rights of people with HIV is still quite acute in Ukraine, and that it cannot be resolved without the state’s involvement.
