Today in Washington DC, the International Center for Research on Women released new research that highlights some of the challenges facing adolescent girls growing up with HIV in Zambia, where nearly six percent of girls ages 15-19 are living with HIV.
Previous research has found that adolescents living with HIV in Zambia have difficulty adhering to their medication, disclosing their status to family and friends and coping with stigma. Despite this research, very few community or clinic-based programs are designed to support girls’ healthy transition from adolescence into adulthood.
To fill this gap, ICRW interviewed 24 adolescent girls living with HIV in two different health centers in Lusaka, Zambia through participatory workshops and in-depth interviews.
At the individual level, ICRW found that girls living with HIV said their health status was not going to hold them back, but they faced myriad challenges, including a lack of support to cope with emotional needs, a lack of tools and advice on how to disclose their status and to whom, a fear of experiencing stigma if their status becomes known, challenges around taking their treatment and gaps in knowledge about HIV.
All participants in the study acknowledged they knew it was important to adhere to their anti-retroviral drugs (ARVs), but noted that they faced challenges in taking their medication, especially when social events overlapped with medication times, exposing them to the possibility of others finding out they were HIV positive.
The girls interviewed said that there were gaps in knowledge around HIV, especially around how HIV is transmitted to sexual partners. Girls were unaware that being on ARVs greatly reduces the chance of passing on the virus to a sexual partner, but few clinic staff and adolescent counselors mentioned that because they feared it would encourage the girls to be sexually active.
“It was clear in talking to the girls that too often, they are given misinformation, or very little information regarding their sexual health, which inhibits girls’ ability to talk openly about their sexuality and ask important questions about entering into relationships as they get older,” said Anne Stangl, senior behavioral scientist and the lead researcher on this study.
At the inter-personal level, girls noted that family provided vital support and encouragement, but that they often had a lack of detailed knowledge about HIV, including how HIV is transmitted. In some cases, girls reported guardians moving them away from other children in the family or providing them with separate cups, plates, and clothes.
At the institutional level, those interviewed said they were generally happy with their clinical care, but they reported several concerns, including long wait times and administrative challenges, fears around being seen by people they know, and limited access to neutral information about sexual health. Some girls mentioned wait times so long they had to miss full days of school in order to adhere to their treatment. At schools, girls mentioned that teachers themselves often provided incorrect information about how HIV is transmitted, making the girls feel sad and uncomfortable.
Overall, the research highlighted that despite the challenges, girls living with HIV in Zambia want what all girls want: to hang out with their friends, go to school, be in relationships, and think about their future. The results from our research point to a number of interventions that would enhance their ability to do just that, through strategic support and changes at several different levels:
- Individual level
- Create opportunities for adolescents living with HIV to engage individually with other adolescents living with HIV to create a broader support system for them; and
- Disseminate new sources of information on sexual health and HIV transmission that can be accessed discretely on the internet or throughout clinic waiting areas.
- Interpersonal level
- Develop information sessions and counseling support for parents and guardians of adolescent girls living with HIV to help increase their knowledge about HIV.
- Institutional level
- Implement procedural changes at the clinic to reduce wait times;
- Train adolescent counselors on discussing sex in a neutral way;
- Train and supervise teachers to integrate existing curricula on sexual and reproductive health and HIV-stigma reduction in schools; and
- Implement school-wide campaigns promoting compassion and support for people living with HIV.
“These recommendations don’t require a ton of investment or even a huge burden of time,” said Stangl. “Girls living in Zambia are dreaming of bright futures, despite their HIV status, but it’s up to us to make sure that the barriers they face don’t inhibit their ability to fulfill their dreams.”