Youth voices from the 2nd International Workshop on HIV Adolescence

Youth Reference Group
SHARE staff

Through the many presentations, activities and events during the three days of the 2nd International Workshop on HIV Adolescence: Challenges and Solutions, the emphasis on youth involvement was highlighted consistently. It is through this lens that SHARE staff reflect on thoughts from youth participants before its closing.

Changing mindsets and having big dreams

“I am from Swaziland, in my second year of Bachelor of Nursing Science, and living with HIV. I came to this conference to learn more about the engagement and empowerment of youth on HIV. I am 18 years old and a team peer leader for the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF). I lead activities with other young people living with HIV, and I am a kind of role model to them. Many of them think they will not be able to go to school or have a future. I want to change the way people perceive and think about us – and how we think about ourselves. We underestimate ourselves and sometimes our families are not supportive. I stayed with my sister throughout high school. She didn’t want me to be open about my status – she was afraid of what people would say. After high school, I decided to do it myself and joined a support group for youth living with HIV. We have so much fun: we have activities and are comfortable to share our challenges and how to tackle them. I want to encourage youth living with HIV to have dreams. I have so many big dreams: to be Minister of Health in my country, to run my own organization on HIV, to be a professor. Dreams motivate me in what I do.

“Youth should be more involved in counselling and giving the medications. When someone my own age comes, I am more likely to listen. As youth, we want to see less talking and more action. We also want to see more youth involved in future conferences so that they are able to go back and reach their peers.”

  • Treasure, EGPAF, Swaziland

Youth empowering youth

“My favorite thing about the youth in this place is that they are champions for more youth involvement in these conferences. The other thing is the materials I collected during the marketplace. That was a very important session. I am going to teach other young people in my youth organization and I’m going to give them the information I learned from the conference so that we can empower more young people in East Africa.”

“What I learned is that most older people, or probably the donors and governments, they tend to think that young people are not capable of running their own shows, running their own programs. But when they do have to run the programs, they can reach more people as opposed to working with just those who are older.”

  • Members of the Youth Network, Kenya

Building a solid foundation and taking responsibility for your own legacy

“This conference was about empowering youth to reach out and equip others on how to protect themselves from HIV. I think it is difficult to empower youth when the learning foundation has been bad – our parents don’t speak to us about HIV. When I was young, my parents told me that they bought babies at Shoprite. That became my mindset about how we got brothers and sisters. When I grew up, it was hard for me to adapt to other information. We don’t open up, and then we end up getting infected with HIV because we can’t make informed decisions. I am responsible for protecting myself and my legacy which is coming. When I realized that, I went out to get more information about HIV and started equipping others in my school. Another challenge is stigma. In our township, HIV is still considered a death zone. Even with our friends, it can be hard to say, “Guys, I’m HIV-positive.” We think that we can be infected by being around those who are infected. Our parents tell us not to socialize with people living with HIV. It starts with yourself – accepting your own status.”

“This conference has been magnificent, and I have learned a lot and grown as a person. Most people are inspired to make a living instead of making a difference to other people. We should be trying to change our society, country, and the world at large. This conference shared some of the skills and opportunities to create that change. Addressing HIV at a young age is important, instead of trying to educate people later in life.”

  • Vuyolwethu and Siya, Grassroot Soccer, Khayelitsha, South Africa

Balancing the desire to help others with the need for self-care

Shanine, who worked as a Community Adolescent Treatment Supporter and is now a Youth Champion with Africaid Zvandiri, was asked about how to deal with helping others when youth supporters have their own needs. She acknowledged that she needs support from her peers too sometimes, saying, “With support we stay strong."

  • Shanine Mushonga, Africaid Zvandiri, Zimbabwe

“We want to help others. We sometimes think it is more important to help others than ourselves. If we give support to others, then how do we give support to ourselves as well?  I think that is an important
question to ask ourselves. So one strategy I have set up is to ask myself, “Am I getting more annoyed than usual? Have I been sleeping well recently?” And if not, sometimes when people ask me to do something, I have to stop and say, “I would love to do that, but right now my capacity is overloaded. One of the things that we must remember is that it is ok to say, ‘I am not ok.’”

  • YiChi Chiu, Chang Gung Memorial Hospital, Taiwan

The way forward: maintaining momentum

The Youth Reference Group reminded participants that, “It now depends on you to be productive after this conference or not.” Dany Stolbunov, an HIV activist and member of Teenergizer, gave an analogy of a mother whose young child was desperately sick one night. He asked, “What would stop you from getting the treatment you need for your child?” The obvious answer – nothing would stop you – reminds us that we should fight equally hard for the health of our youth.

The group made six recommendations:

  • Get political – advocate on policy/legislative barriers affecting the health of youth
  • Effective feedback system – share what you learned/experienced at the conference
  • Be more inclusive – ensure all issues related to youth health are addressed
  • Increase the number of adolescents at the next conference
  • Create more opportunities for youth capacity development and skills training
  • Hold similar events in other regions, such as Asia
    Shanine Mushonga and Linda-Gail Bekker
    Shanine Mushonga and Linda-Gail Bekker

In closing, Linda-Gail Bekker noted that, “The need for this workshop going forward is clear – every hour we lose ground,” referring to a statistic shared by Dany that 75 young people are infected with HIV every hour. She highlighted the need to put a technical team or consortium together to work on issues raised during the workshop and identify tangible indicators and scorecards to gauge progress against structural factors such as the age of consent for HIV testing. She also committed to greater youth representation at the next workshop, including efforts to involve those aged 10-18 years old.

Workshop presentations and video recordings will be posted at: http://www.infectiousdiseasesonline.com/