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Adolescents living with HIV and their families find a "second wind" after participating in training
When adolescents living with HIV arrive at the ‘Fundamentals of Health and Support’ training provided by UNICEF and the Ministry of Health of Uzbekistan, they are confused and withdrawn. Their parents too are burdened by the awareness that their children’s lives will never be the same again. However, over the next few days, a dramatic change takes place. By the time that they leave, they are full of enthusiasm, they have hope for the future, they are buoyed up by contact with friends and like-minded people.
The latest training for HIV-positive adolescents who know their status and their parents
was held in Tashkent on August 9-11, 2018, for families from the city of Tashkent and the Tashkent region. Thirty adolescents took part in it, including four from a children’s home whose interests were represented by Nigora Islamova, a paediatrician from the institution.
The classes for children and parents took place in separate groups. The goal for the adolescents’ training is to give them both knowledge and life skills, to help them become responsible for their condition, to learn techniques to communicate with their doctor, parents and peers, and if necessary to adjust their antiretroviral (ARV) therapy.
The parents are provided with general information on HIV, HIV treatment and how to prevent secondary diseases. They are taught how to care for their HIV-positive children, how to plan for the future, how to help "difficult" adolescents, as well as the legal basics of protecting children living with HIV.
"I have experienced a lot of negative emotions since I learned about my illness," says Anya, a 14-year-old participant in the training. “I was angry with my mother for dying. I was angry with my father for leaving us. I was angry with the doctors for finding the infection in me but not prescribing ARV therapy. At the training, I realized that it was time to stop being angry and desperate, and to just start living.”
What was unique about the training for children is that it was conducted by five teenagers who themselves are living with HIV. These teenagers had already gone through this and other training, and were trained as trainers. Speaking as equals, they told their peers stories about living with HIV and demonstrated that life can indeed be full and happy.
Currently, there are about 37 thousand people registered as living with HIV in Uzbekistan. The Government, with the assistance of international organizations, is working hard to prevent new cases of HIV infection, eradicate discrimination against people living with HIV, and provide support to HIV-positive children. As of this year, according to Order of the Ministry of Health № 336, children with HIV under 18 years of age will receive benefits through regional departments of social security, without having to undergo re-examination by the Medical and Labour Commission of Experts.
A UNICEF trainer Nargiza Karabaeva, who is also a paediatrician at the Tashkent regional Centre for AIDS Control, and an expert in such trainings, worked with the parents' group. During the sessions, they got answers to all of their many questions and, by discussing common problems, developed close personal ties. Now that they have been given hope for a better future for their children, they want to help other parents by volunteering at Day Care Centres for Children and Families Affected by HIV.
This year, similar trainings were held in the Ferghana Valley. They were also conducted in Samarkand for children and families from Surkhandarya, Syrdarya, Jizzakh, Samarkand, Bukhara, Kashkadarya regions and the Republic of Karakalpakstan. However, according to Kamila Fatykhova, a National Officer at UNICEF, the training in Tashkent differs from the regional ones: "The group is active, the children are distinguished by a higher level of knowledge, perception of their HIV status, and prior involvement in group work at Day Care Сentres for Children and Families Affected by HIV. In places where no such centres exist, the picture is different. Children don’t accept diagnosis, they don’t want to learn, they won't leave their homes or take ARV therapy, and they neglect their hygiene. "
"Prior to this training, I didn’t have much knowledge about HIV," said Mamarasul Shodievich, participant in the adult training. "I thought that since HIV can’t be completely cured, there was no point in taking ARV therapy. Now I know that this therapy is not only crucial to keep a child with HIV alive but that it can change the child's quality of life for the better. Our 13-year-old grandson has now got his "second wind". On the opening day of the training my grandson smiled for the first time in the months since he has been diagnosed HIV-positive."