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The Result: Saving the Lives of Children

An internship for specialists working with parents and guardians of HIV-positive children and adolescents took place in Ekaterinburg. It was organized by NP E.V.A.  …
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An internship for specialists working with parents and guardians of HIV-positive children and adolescents took place in Ekaterinburg. It was organized by NP E.V.A.
On the 10th of March, Ekaterinburg public infectious disease hospital and NP E.V.A. organized a two-day internship for 10 specialists (children psychologists, pediatricians, social workers) who work with parents and guardians of HIV-positive children and adolescents.
The internship’s participants:
— Ekaterina Stepanova, infectious disease doctor at the Tatarstan AIDS Center (Kazan);
— Olga Toropova, Director of the non-profit House (Krasnoturyinsk);
— Vera Antonova, non-profit Umka (Sukoi Log);
— Olga Kiryanova, Children+ Foundation (Moscow);
— Natalia Utrovakaya, NP E.V.A. (Saint Petersburg);
— Polina Vladimirovna Safrinova, psychologist at the Saint Petersburg center for the prevention of and fight against HIV/AIDS (Saint Petersburg);
— Elena Nikolaevna Voropaeva, pediatrician at the Saint Petersburg center for the prevention of and fight against HIV/AIDS and infectious diseases (Saint Petersburg);
— Elena Yurievna Voitovskaya, psychologist at the state infectious disease hospital №2 (Vladivostok);
— Tatiana Evgenievna Guseva, psychologist at the Orenburg regional infectious disease clinic (Orenburg).
The first day of the internship was as follows:
— pediatricians M.M. Volinskaya and E.O. Gordon spoke about the system of providing care to children in Ekaterinburg and Sverdlovsk region;
— social work specialist M.V. Dolganova spoke about social support for children and families;
— psychologist E.V. Guseva presented on psychological support for children, sharing about their diagnosis, support groups, and cooperation with non-profits;
— peer counselor Yevgina Burina shared about meetings for girls supported by NP E.V.A. in October 2015;
— peer counselor Valentina Raru spoke about family consultations.
Then the counselors heard from specialists from the social support center Otrada, who shared about school for adoptive parents and adoption/fostering HIV-positive children.
Finally, the foundation New Time addressed the group. The foundation’s head, M.V. Halidova, and psychologist O.P. Antonova, introduced the specialists to examples of interaction between the AIDS center and non-profits. Teenagers presented to the experts in issues of adherence and diagnosis disclosure about their feelings and told the ‘adults’ what is important to them, what helps them feel better, and what kind of support they need.
On the second day the program activity was devised as a working meeting in order for the specialists to exchange their knowledge and share experiences and to create a concept of advice for specialists working with HIV-positive children and adolescents, their parents and guardians. The meeting was led by the press secretary for the AIDS Center, Maria Kostareva. Here is what she wrote about this event on her page on the social network Facebook:
“The day began with presentations from the participants from Ekaterinburg. Each was allotted 5-10 minutes. But there was not one presentation less than 20 minutes. Stopping them was impossible considering that it is extremely rare that specialists who work with children gather together and are not extremely limited for time and when you can learn about the accomplishments and problems of each individual… For us it was an incredible experience. And an opportunity to stop oneself, analyze, summarize, become acquanited with the work of colleagues, and work together. We need more such projects!”
Commentary from Olga Kiryanova, Children+ Foundation (Moscow):
“I am very appreciative of the staff at the Sverdlovsk AIDS Center for spending these two days with us: they were open, interested, and absolutely not indifferent about their work. I immensely enjoyed the time we spent together! It is surprising that pediatricians, psychologists, representatives from non-profits, and peer counselors – different people from different professions – came together so unitedly. I am convinced that the result of our work will be saving the lives of children, impacting the future of adolescents, and, of course, a useful collection of best practices.”
During the meeting a critical issue brough forth was about difficult cases of supporting families where HIV affects the children. The main problem is when parents refuse treatment for their children, and what can specialists from the AIDS center and non-profits do in these situations?
The specialists from the Sverdlovsk AIDS center have experience solving this problem, both successful and unsuccessful. More successful practices include interaction between the regional committee on minors and territorial commissions.
At the working meeting a decision was made: develop advice intended specifically for specialists from various departments and committees who must become partners in order to defend the rights of HIV-positive children and adolescents who are daily refused medical, social, and psychological care.
The advice handbook is ready to be created by the meeting participants. It will include general information about HIV and children, evidence-based algorithms of interdepartmental interaction of various institutions, excerpts from laws, about the frightening phenomenon of AIDS dissidents, especially among parents and guardians.
Such meetings take place rather seldom. We hope that this project serves as a beginning for the collaboration on an interregional level and gives an opportunity for future exchanges of experience between specialists from governmental institutions and non-profits.
Written by: Natalia Utrovskaya.

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