Health Care for HIV Children and Parents

HIV-positive parents and their children find it difficult to access quality healthcare and social services due to healthcare workers’ biased attitude.

They keep saying “You have HIV, you have HIV”.  These words really kill you. And you start saying to yourself “Yes, I am indeed sick.”  

Fear, frustration, biased attitudes, denial of access to social and medical assistance, dismissal from work, insults and threats – this is what people living with HIV, including women and children, still face on a daily basis. 

Today, there are about 41,500 children born to HIV-positive parents in Russia. Most of them are healthy children. However, they often suffer from the same biased attitude that is displayed towards their parents and which affects the quality of medical and social services they are provided with. It happens even more often if the family is vulnerable.

In August 2008, the Yury Levada Analytical centre conducted a survey of HIV-positive mothers commissioned by UNICEF.  100 women living with HIV from five Russian cities – Chelyabinsk, Orenburg, Tver, Magnitogorsk and Orsk – responded to questions about medical and social assistance that they were entitled to receive. The survey was conducted in the form of small group sessions and in-depth interviews, which revealed a broad range of views on the subject and allowed to obtain subjective assessment of the quality of services provided.   

Today, thanks to the implementation of a priority national healthcare project in Russia, as well as federal and regional targeted Anti-Aids programs, HIV-positive people have gained access to antiretroviral therapy almost in all Russian regions; they receive medical assistance and psychological support at regional AIDS centres.

Most of the respondents spoke positively about the work carried out at these centers. Despite some inconveniences (mainly, long lines), the quality of medical services provided at such centers is characterized as highly satisfactory. “I like coming here because of the attitude of health care staff. They always greet you with a smile and give you professional advice when you start complaining about your health problems,” one of the woman said.  

The problems for HIV-positive women and children begin when they try to seek medical assistance at mainstream  healthcare centers. They approach regular doctors only in case of emergency fearing  discriminatory attitudes and disclosure of confidential information about their diagnosis. Most of the survey respondents were subjected to rough treatment by healthcare staff who displayed scornful attitude to them during their pregnancy and childbirth: “They treated us abominably at the maternity hospital – a  bare mattress covered with a rubber sheet, no pillows, no bed sheets, no blanket. In winter, it was so cold, I couldn’t keep my teeth from chattering. The doctors were so afraid of getting infected they felt like  putting  on bullet proof jackets to protect themselves. I felt deeply hurt…If you have HIV, you are treated as if you were no longer a human being but a tramp…” 

The survey participants also testified to some cases of labour law violations by employers. “My friend was dismissed from work. She was pregnant. It so happened that some people at her work saw her medical history chart, and her diagnosis became known to everyone,” one of the survey respondents said.   

HIV-positive parents try to minimize their contacts with social services, approaching them only in case of emergency, and, as a result, they do not get the full scope of social services that they are entitled to. Social workers are usually criticized for their poor knowledge of the benefits that HIV-positive children are entitled to get, red tape, and, sometimes, their negligence and discriminatory attitudes.

HIV-positive mothers also referred to the problem of having their children enrolled in a kindergarten or a school. It poses a serious problem even if their children are healthy, but their parents’ HIV-status is revealed. “I don’t want to enroll my child in a kindergarten not because he is sick, but because I fear someone may learn about his diagnosis and carry the news to everyone in the neighborhood.”  

The survey has revealed that HIV-positive parents are badly in need of  information on a broad range of issues of a medical, legal and psychological nature. The need for such information is particularly high, considering the low social cohesion of the group of persons in question and their fear to openly assert themselves in the society. In many cases, the perceived shortage of information is felt not so much as regards the medical aspect of HIV, but rather a wide range of issues related to the daily life of HIV-positive people.

The survey findings will be forwarded to local healthcare, social welfare and education officials in Russian regions to facilitate the development of interventions to reduce the existing public negative attitude towards people living with HIV and upgrade the quality of assistance provided to them.

http://www.unicef.org/russia/media_9718.html
30 September 2008