Preventing HIV-Infection Among Children and Adolescents in Crimea

Elena Berezina, psychologist, Gestalt therapist, and director of the Crimean regional community charity organization ‘Our Hope’, shares about preventing HIV infection among children and adolescents in Crimea.
 
In 2010 the charity organization ‘Crimean Foundation Our Hope’ was founded. The main objectives were to unite and support families who raise children with socially significant diseases, including HIV.
 
From 2010 to 2015 the members:
 
— contributed to the upbringing of 26 HIV-positive orphans and children without parental care;
 
— employed specialists for legal support for orphans whose HIV status was disclosed publicly by medical personnel (in this case criminal proceedings were initiated based on article 132 of the Ukrainian constitution); succeeded in attracting societal attention to this issue;
 
— thanks to collaboration with the Center For Social Services for Children, Families, and Youth, the work of mutual support groups for families raising children with HIV and TB (10 meetings were organized and from 8-14 people took part in each meeting) was able to continue;
 
— over 500 educators across Crimea participated in a special course entitled ‘Developing Tolerance to HIV-Positive Children in Preschool and School Education’ to raise their qualifications;
 
— four adolescents affected by HIV studied in the leadership school in Kiev; in the summer they organized a support group and held craft activities for younger kids, trainings on health and safe behaviour;
 
In 2012 the organization implemented the project ‘Mobilizing the community of adolescents affected by the HIV/AIDS epidemic to defend their rights’ with financial support from UNICEF and with the partnership of the Crimean ‘Center for the Prevention of and Fight Against AIDS’.
 
More than 30 teenagers who are affected by the HIV/AIDS epidemic were drawn to the project. The teens were united into a mutual support group and actively participated in events aimed at creating tolerance in the education systems. They participated in trainings for educators and medical personnel as well as in the summer psychotherapy program ‘Perspectives’ at the Crimean ‘Center for HIV infected children and youth’.
 
The logical continuation of this project was the ‘Positive Childhood’ project that was funded by the ‘Democracy Assistance Fund’ of the USA Embassy in Ukraine. The project called for the monitoring of rights of HIV infected children in Crimea in the spheres of education, healthcare, and family as well as legal assistance and support for families who are raising HIV-positive children whose rights have been violated. One of the project’s missions was to increase the level of knowledge among the mass media on the issues of HIV+ children. A three-day training was held with participation from HIV+ children to meet these goals.
 
In 2015 the organization re-registered and united with three non-profits whose activities were focused on protecting motherhood and childhood. After being re-registered, the name changed as well to the Crimean regional community charity organization ‘Our Hope’.
 
Our organization successfully works with non-profits in Russia and we exchange experience in helping families with HIV-positive children, organizing socio-psychological support for families with children on status disclosure to children and in creating tolerant attitudes towards children with HIV in the educational system.
 
In our work we are guided by the approach that the community has a huge amount of potential and resources and they can solve the majority of problems on their own. Therefore we do not organize projects on care and support but rather on creating communities through educational events, peer support groups, and we help bring members of the community into legislative work.
 
Recently the EECA union of PLWH presented the best practices in working with adolescents affected by the HIV/AIDS epidemic in the Eastern European and Central Asian countries, and two of our organization’s practices were included.
 
PRACTICE 1. Training seminar for Representatives from Mass Media “Positive Childhood”.
 
Mass media representatives and social workers were able to meet with children living with HIV and with families who raise HIV-positive children at the training. The trainers created an environment for interaction, which allowed the participants to learn more about the particularities of the lives of the kids and to receive correct information regarding their questions about HIV/AIDS.
 
The work was arranged in a way that allowed for groups to freely communicate and at the same time to participate in role play and look at different situations as well as make group presentations.
 
The results of the event: 25 mass media representatives were trained on tolerance to HIV infected children and their family members. All those who participated declared that they would implement the information they received into their daily work, and also actively share it with those around them.
 
The surveys that were done prior to and following the training revealed a high level of comprehension of the information and a heightened level of knowledge on the issues of children and HIV. Most importantly, the main goal of the event was reached: the participants formed a tolerant attitude to children living with HIV. As one of the participants remarked at the end of the training, “I never thought the over the course of a few days it was possible to so radically change one’s perspective and attitude”.
 
PRACTICE 2. Training for doctors “The Particularities of Socio-psychological Adaptation and Treatment of Children and Adolescents Living With HIV”
 
The event’s program was as follows:
 
Welcome, introduction, presentation of participants. Participants’ expectations.
 
Initial survey.
 
Presentation from adolescents: “Difficulties Teenagers Living with HIV Face”.
 
Activity: ‘What do/don’t HIV-positive children have the right to do?”
 
Discussion.
 
Presentation from adolescents: “Rights Violations of HIV-Positive Children in Ukraine”.
 
Discussion.
 
Conversations with medical personnel and adolescents, question and answer.
 
Coffee break.
 
Analysis of Clinical Cases.
 
End of training questionnaire.
 
Conclusions, feedback.
 
The results: participation of children and teenagers living with HIV allowed medical personnel to look at themselves and their standard actions from a new perspective and to become familiar with the children’s worries, fears, and difficulties.
 
Quotation: “It hurts me when the gastroenterologist, after the examination, upon seeing my medical chart with the diagnosis “HIV infection” jumps up and runs to wash his hands, as if touching my stomach would infect him.”