A version of this post originally appeared on Interagency Youth Working Group’s Half the World Blog. Reposted with permission.
In 2012, young people ages 15 to 24 accounted for an estimated 40 percent of new nonpediatric HIV infections worldwide [UNAIDS World AIDS Day Report 2012]. Furthermore, perinatal HIV transmission is a major cause for HIV infection, and given the success of pediatric antiretroviral therapy (ART), many more infants born with HIV are growing up into adolescents and young adults living with HIV.
While care and treatment programs for people living with HIV (PLHIV) can be found in every country, there is a gap in provision of ongoing, supportive counseling for adolescents living with HIV (ALHIV). Adolescence is often when young people begin having sex, which increases chances that adolescents living with HIV might pass the infection to partners who are HIV negative. Another concern is that girls living with HIV may become pregnant; if they do not know about or have access to services for preventing mother-to-child transmission, they can pass the infection to their babies. Given that adolescents are a large sub-group of those living with HIV, there is a need for tailored interventions and support systems that address adolescents’ unique vulnerabilities.
To shed light on the specific health and social support needs of ALHIV, FHI 360 — on behalf of USAID’s Interagency Youth Working Group — developed a resource called Positive Connections: Leading Information and Support Groups for Adolescents Living with HIV. This unique guide provides facilitators with background information about the needs of ALHIV, tips for starting an adult-led information and support group, 14 sessions to follow in a group setting and guidance on tracking a program’s progress. The goal of the guide is to help ALHIV:
- Understand their HIV diagnosis and participate in the management of their care and treatment
- Learn that many young people live healthy and productive lives while living with HIV
- Identify strategies for positive living, including adhering to their treatment regimen
- Prevent transmitting HIV to others; avoid re-infection; consistently use family planning to prevent unintended pregnancy; learn how to avoid infecting their babies, if they want to start a family
- Develop life skills such as understanding their emotions, communicating effectively, dealing with stigma and discrimination, making decisions about their future and improving their quality of life
Who can use this resource and how?
The guide is designed for people who have been trained in or have experience in HIV counseling and testing, who work in a counseling capacity with ALHIV, who provide other psychosocial support services to ALHIV or who have been trained to work with adolescents in the context of reproductive and sexual health. These audiences include health care providers, counseling professionals, teachers, parents and caregivers, and faith-based leaders.
Why this matters
In the process of developing the guide, FHI 360, along with Save the Children and GNP+, held focus group discussions with ALHIV to get their perspective on adhering to ART; on disclosing to family, friends, and sex partners; on having relationships; and on planning for the future. Many young people talked about the fear they experienced when they were diagnosed, the stigma they faced, and the sadness they felt when they tried to imagine a future.
One young man said, “The key issue for me is there was exceptionally minimal support offered when I found out I was positive. … I was in a precarious emotional situation but was simply given a few pamphlets by the STI clinic. Immediate follow-up, counseling and so forth should be available when youths test positive. It should not be an onus upon the youth to engage with resources for HIV; that kind of mindset does not exist right after you test positive.”
With Positive Connections, we have the chance to provide the emotional support and crucial information that ALHIV need. They must know that with earlier detection, effective drug regimens and a healthy lifestyle, it is possible to live a healthy and productive life. And they have as much right as anyone to be in a relationship, go to school, get a job, and start a family when or if they are ready.