Isyk-Kul province, Kyrgyzstan, 6 July 2018 – On 2-6 July 2018, over 200 clinical care providers, psychologists, social workers, children and adolescents living with HIV and parents from Kazakhstan, Kyrgyzstan, Tajikistan, and Uzbekistan participated in the regional seminar on pediatric HIV treatment and the first therapeutic camp organized by UNICEF in collaboration with UNAIDS, UK Children’s HIV Association (CHIVA) and the Pediatric European Network on AIDS Treatment (PENTA).
Eastern Europe and Central Asia is the only region in the world where annual HIV infection continues to rise rapidly. With 1.6 million people living with HIV in the region, estimated 190,000 new HIV infections were registered in 2016 according to UNAIDS. The HIV epidemic in the region affects the most marginalized and excluded population, including children and adolescents.
“I want to become a doctor. I see that children like me need support,” said Tamir* (12) from the city of Osh in Kyrgyzstan. He is one of 60 adolescents living with HIV aged 10 - 17, who took part in the therapeutic camp. The camp brought together children who already know their HIV status, but need to enhance their understanding and coping with the infection as well as their capacity to live positively with HIV, stay motivated to adhere to treatment, and empowered to develop and thrive.
For many of the children and adolescents attending the therapeutic camp, it was the first time they could talk openly among peers about their fears of disclosing their HIV status to siblings, friends and family, about their anxieties of what their future will be and about the stigma and discrimination that they experience daily.
Care providers – either healthcare workers or family members – are the first source of support for children and adolescents living with HIV. This workshop provided an opportunity to bring state of the art knowledge about the latest advances in HIV treatment and care for the clinical care providers and psychologists. It also provided an environment to learn about improving communication between adolescents and their parents/care-givers about sensitive issues like mental health, substance use, sexuality, autonomy and trust.
Often parents of children living with HIV are HIV positive themselves with many unresolved issues. For example, they struggle with disclosing their own HIV status to their children, they feel guilty for “passing” this virus to their child or they worry about protecting their child from being discriminated. They are not comfortable talking about sensitive topics, like sexual relationships in the context of HIV, especially as their children grow and become adolescents. The therapeutic camp and workshops helped parents and guardians to improve their capacity to support their children to manage not only adherence to their treatment but also look after their emotional wellbeing and increase their confidence in managing the psychosocial impacts of HIV.
“By bringing adolescents, parents, doctors, psychologists and care providers from 4 countries all together into the same space - we were able to enhance their mutual dialogue, understanding and acceptance. These exchanges were deeply transformative. They will help UNICEF work towards building more inclusive societies that accept and respect all people, regardless of their differences, their health status, ability, education, religious beliefs, ethnicity, behaviors, or gender identity and where all children living with HIV will be equal members of their societies, able to speak openly about HIV and realize their dreams and full potential. ” explained Nina Ferencic, Senior Advisor on HIV/AIDS, Adolescents’ Development and Participation at the UNICEF Regional Office for Europe and Central Asia. “UNICEF is committed to adolescent participation in all domains affecting their lives. By working with HIV positive children, we empowered them to become actors in their own care and build the skills and competencies they need to succeed in their lives” she added.
This initiative in Kyrgyzstan is unique because, for the first time, it brought together care providers, practitioners, adolescents and families to enhance their capacity to work together as partners to achieve the best possible outcomes for the health and wellbeing of every HIV infected child. The lessons learnt here are valuable not only for HIV but also for working with children who have other chronic conditions and/or disabilities.
“At the first trainings for healthcare workers that we conducted a few years back jointly with UNICEF in this region, we did not have any participation of young people or their families. Now we have moved towards hearing their views and understanding their needs in what has been a fully mixed programme. Working with people is a fundamental part of addressing HIV and AIDS in children and adolescents,” said Steve Welsch, head trainer of the Pediatric European Network for Treatment of AIDS (PENTA).
This camp and training programme is a great example of horizontal cooperation, skills sharing and networking between central Asian countries and top international experts. It has resulted not only in the exchange of state-of-the-art knowledge, but has also built trust and long lasting connections and friendships that will help reduce stigma and discrimination towards all people affected by HIV in the region.
*The name was changed.
UNICEF promotes the rights and wellbeing of every child, in everything we do. Together with our partners, we work in 190 countries and territories to translate that commitment into practical action, focusing special effort on reaching the most vulnerable and excluded children, to the benefit of all children, everywhere.
For more information about UNICEF and its work for children in Kyrgyzstan, visit www.unicef.org/kyrgyzstan.