The education and prevention programs for young people living with HIV/AIDS started in 2001 and were completed in March 2007.
A survey conducted by Romanian Angel Appeal in 2001 showed that 67% of the 2.500 children and young people beneficiaries of the “Sunflower – Smile” Day Clinics were not aware of their HIV diagnosis. According to the legislation in force, the doctor could not disclose any health related data to an underaged patient unless the parents or legal guardians gave their consent.
Most of the parents of the HIV positive children who benefited from Day Clinics care had chosen not to disclose the HIV diagnosis to them for fear of rejection from the schools, schoolmates, society in general. Another concern of the parents was related to the reaction that children, but especially teenagers, would have at hearing the news that they were HIV positive. This in turn could have reduced therapy compliance and led to aggravating the HIV/AIDS-related symptoms. Fear of discrimination, marginalization, rejection from school and community, fear of an intense and hard to contain reaction to finding out the HIV diagnosis, all these concurred to the parents’ decision of postponing or refusing to disclose the HIV diagnosis to their children.
At the start of their sexual life, the young people were unaware of their HV infection and therefore could easily transmit it to their partners. This was, as a matter of fact, one of the main reasons for which Romanian Angel Appeal decided to initiate a program for diagnosis disclosure to HIV positive young people, encouraging at the same time a responsible behavior, with low risk of transmitting HIV to their partners as well as other STDs prevention.
The primary goal of the project was to support and facilitate the HIV diagnosis disclosure to infected children and young people by their parents or families, through a network of services that can provide psychological and social support for both families and young people.
The project for HIV/AIDS diagnosis disclosure included 3 major components:
Diagnosis disclosure implies a long-time process and the Day Clinic psychologists had a very important role. During this period, the psychologist held several meetings and counseling sessions where it discussed with the parents the issue if diagnosis disclosure to the child or teenager.
During these sessions, the specialist explored a series of aspects such as reasons that made parents withhold the diagnosis from their children, the reaction that the parents believe their children will have, parents’ concerns, choosing the ways for diagnosis disclosure, choosing the right moment as well as the kind of communication relation parents have with their children.
At the same time, the psychologist held a series of meetings with the teenager or child alone, trying to assess how well did it communicate with its parents, how little / much did it know about its disease, what kind of reaction could be estimated at the moment of disclosure.
The psychologist, doctor and social worker were constantly supporting the parents and families of the HIV positive children or teenagers by showing the necessary understanding and help.
These camps were organized for the young people immediately after diagnosis disclosure, in order to reduce the isolation that they often hide in after finding out that they are HIV positive and to encourage them to know each other, exchange ideas and impressions, communicate and support one-another.
In the camp, in a friendly environment and with support from the specialists, the HIV positive young people were involved in meetings and workshops that approached subjects of great interest to them: prevention of sexually transmitted diseases, of drug use and associated risks, communication and HIV diagnosis disclosure to the partner (acceptance, future plans) and discrimination (how can one keep its friends).
This last component of the project was added in 2005 and aimed at training peer educators among HIV positive young people in order to educate the other HIV positive young people and their community.
In two camps organized in the summer of 2005, the young people selected from 12 counties had the chance to develop their communication, relating and negotiation skills. By the end of the project, over 1.600 young people were evaluated and integrated in the project, 800 of them taking all necessary steps for diagnosis disclosure. 314 teenagers from 12 counties went to 12 camps organized especially for them.
At the same time, the project allowed for a work methodology to be designed along with various work tools for professionals as well as specialized papers and guides targeting the psychosocial care of HIV positive child or teenager.
For more information about the program and the results, please see the Final Project Report.