Challenges on diagnostic disclosure to HIV positive teenagers Nicoleta Manescu Bogdan Bobolea Romanian Angel Appeal Foundation Romania Session Title: Youth and HIV: What’s Sex Got to Do With It? Reference number MOAX0505

HIV/AIDS situation in Romania TOTAL AIDS cases9.825 AIDS cases children7.263 AIDS cases adults2.562 AIDS deaths in children3.622 AIDS deaths in adults908 Total deaths AIDS4.530 TOTAL HIV cases6.433 HIV cases children4.478 HIV cases adults1.955 Lost from records541 Source: “PROF.DR.MATEI BALS” INFECTIOUS DISEASES INSTITUTE; HIV/AIDS MONITORING AND EVALUATING DEPARTMENT PLWHA (People Living With HIV/AIDS) from which: 80% teenagers Patients under active medical surveillance Patients receiving HAART (Highly Active Antiretroviral Therapy)

Romanian Angel Appeal Foundation Mission: Improving the medical, social and psychological services offered to people in need, including children and young people affected by HIV/AIDS, by providing direct services, developing education programmes for specialists active in the field (physicians, nurses, psychologists, social workers) and implementing education and prevention campaigns Strategic Directions - Expanding services and prevention - Increasing participation of children & young people - Advocacy and education - Expanding and diversifying Continuous Medical Education - Expanding research & studies

The Sunflower Smile Day Clinics network The day clinic model was implemented in Romania by Romanian Angel Appeal Foundation. First day clinic was opened in The Day Clinics Network was extended, from 8 in 2003, to 16 in 2005, and offers multidisciplinary services (medical, social and psychological) for HIV+ children, teenagers and adults Results  beneficiaries registered at psychological services  social counselling sessions  psychological counselling sessions

Diagnosis disclosure to HIV+ children and teenagers In 2001, 40% of the beneficiaries didn’t know the diagnosis and had no information on HIV/AIDS, and another 18% had only suspicions on the diagnosis. Most of them were years old. Objectives  To increase the awareness of professionals who work with adolescents living with HIV/AIDS with regard to their role in the process of diagnosis disclosure  To respect the rights and necessity of HIV infected children to know their status and to get involved in the process of decision making regarding their disease  To reduce the risk of sexual transmission of HIV through sexual education of HIV+ teenagers and the risk of HIV transmission to family members through education regarding hygienic rules to be followed in the family

The Right to Adolescence Project funded by Elton John Aids Foundation (EJAF), Partners for Life Foundation, Regione Piemonte, Fondazione Franco Moschino, UNICEF, FRDS  Activities: Counselling for the family and the child for diagnosis disclosure: before, during and after diagnosis disclosure Summer camps for the children and teenagers which find out the diagnosis Training courses on peer education for teenagers Training courses for psychosocial staff

Results  cases evaluated  counselling sessions with parents  counselling sessions with children  879 children and teenagers find out the diagnosis  238 children and teenagers participated in summer camps, from all over the country  64 teenagers trained as peer education  3 brochures produces  2 courses organised for psychosocial staff

Lessons learned  Parents involvement during the entire process of diagnosis disclosure (before, during and especially after diagnosis disclosure)  The role of the multidisciplinary team in the diagnosis disclosure process – doctors, nurses, psychologists and social workers  Teenagers involvement in the projects and programs for their peer, after they find out the diagnosis  The importance of the health education and sexual education of all the teenagers

Increasing the participation of Young people The Teenagers’ e-forum Project funded by Bristol Meyers Squibb & Microsoft Corporation  134 HIV+ teenagers from 8 day clinics included in the project  The forum was accessed for times  A discussion forum between HIV infected teenagers and journalists was created 16 teenagers participated at discussion with journalists 2 preparatory training sessions for the teenagers organised

Increasing the participation of Young people The SEYPA Project Project funded by GSK UK  36 participants from five countries – Romania, Italy, Russia, Spain, Portugal  2 European Conferences of Young People  5 toolkits – family, media, health, education, community (available online in 5 languages)  116 resource documents  14 case studies  435 quotes (testimonials)

Future action plans  Increase the number of peer educators  Increase the participation to support groups of teenagers and their parents  Vocational training for the teenagers  Encourage the teenagers initiatives - support for creating and developing their own projects

My name is Alexandru, I’m 14 and I’ve recently been told my diagnosis. I must admit that first I was scared and I didn’t know if I would be able to live knowing that I was suffering from that disease. I didn’t know what my life was going to be like, but I realized that life was going on and I was supported by many people (my family, the personnel of the day clinic and even other children in the clinic that I talked with and who made me feel better)…there’s one thing I would like to tell to all those who have just learned their diagnosis: HAVE FUN, LIVE YOUR LIFE, ENJOY IT and don’t let sad thoughts discourage you. And to those who have been knowing it for a longer time, in fact, to everyone: DON’T LOSE HOPE! WE’LL GET OVER IT! I’m not going to lose mine.