Sexual and reproductive health rights in adolescents living with HIV

Sexual and reproductive health rights for people living with HIV have begun to receive greater recognition in the past few years, as a result of advocacy by people living with HIV.

One group of people living with HIV remains neglected. Adolescents have particular needs in relation to sexual and reproductive health, and as recent research in Zambia shows, they require tailored responses.

For example, an aunt and legal guardian of a 15-year-old girl living with HIV told researchers conducting an exploratory quantitative study into the sexual and reproductive health needs of adolescents living with HIV:

"My niece was going into depression a few years ago. We didn’t know what the problem was until she told me that she was worried that her breasts would not grow normally like a woman, because of HIV."

"My niece was going into depression a few years ago. We didn’t know what the problem was until she told me that she was worried that her breasts would not grow normally like a woman, because of HIV."

“The needs and concerns of adolescents living with HIV are numerous. Understanding their puberty signs and fear of infertility in adulthood are some of the challenges that affect even those adolescents who are not sexually active,” said Kunyima Banda of the Network of Zambian People Living with HIV (NZP+) who presented the key findings of this moving study at the 3rd HIV Leadership through Accountability Planning and Review Meeting, held from 25-29 July in Nairobi.

The research programme

With funding from DFID, the HIV Leadership through Accountability (LTA) programme supports advocacy for good governance, and universal access to HIV prevention, treatment, care and support in eleven participating countries (nine of which are in Africa). One component of the programme involves developing the capacity of networks of people living with HIV (PLHIV) to manage and perform research studies to strengthen the evidence base for advocacy in their countries. The studies are based on the adaptation and implementation of generic tools developed by the Global Network of PLHIV (GNP+) and partners that investigate issues such as HIV-related stigma, HIV-related human right violations, national laws affecting people living with HIV, and key populations at risk of HIV.

The study in Zambia stems from Advancing the Sexual and Reproductive Health and Rights of PLHIV: A Guidance Package, which addresses the rights of PLHIV to access sexual and reproductive health services, have satisfying sex lives and to have children. The package recommends that PLHIV networks select key focus groups in their countries and investigate their sexual and reproductive health rights, needs and barriers. 

“In 2008, we had carried out a desk review of policies to understand the linkages between sexual and reproductive health (SRH) and HIV – and we found that there were minimal linkages. At the time, we had a lot of requests from us as an organisation, from parents and young people coming to seek information on this issue. And we realised, this was a completely neglected population. If you look at the demographics in our health services, it is mainly the ages 15 to 49. You’ll see that age 16 and below is almost forgotten in health provision, in a lot of ways,” said Banda.

The HIV prevalence in Zambia, with a population of a little over 12 million people, is 14.3%. The HIV prevalence among 15 to 19 year olds is 4.7%, and it is believed that around 82,000 of the estimated 1.4 million Zambians living with HIV are children. But there are no reliable estimates of the burden of HIV disease among adolescents (aged 10 to 19) – most of whom are believed to have been infected perinatally.

As Banda said, shockingly little is known about this population. So to learn more about the SRH needs of the adolescents, and what related policies, guidance, and SRH services were accessible to them, NZP+’s research team held focus group discussions with HIV-positive adolescents aged 10 to 14, and conducted in-depth interviews with Zambian policy makers, service providers, marriage counsellors, and the parents and guardians of the adolescents living in five residential areas of Lusaka.

Results

The SRH needs of adolescents with HIV are a policy and programmatic blind spot in Zambia.

There are no policies or guidelines addressing the SRH needs and concerns of adolescents living with HIV. Government policies that discourage the provision of SRH services to adolescents in general have a particularly negative impact on HIV-infected young people. Those who are sexually active have challenges protecting their partners because the Zambian government is opposed to providing condoms to adolescents. But this is a dangerous policy when it also prevents those who are HIV-positive from accessing essential tools to prevent sexual transmission. Stigma and discrimination make it difficult for them to disclose their status in order to access SRH services.

They face a number of barriers accessing SRH information and services, including concerns about privacy and confidentiality within the health facility. But, Banda said, “living with HIV does not hamper future aspirations of forming families and having biological children. Many of the adolescents in the study setting consider these as rights.”

Cultural barriers make it difficult for parents and guardians to discuss these issues with their adolescent children.

“’It is taboo for me as a father to discuss such things with my daughter,’ the father of one HIV-positive 15 year-old said,” Banda reported. adding that most parents are poorly equipped to provide their children with accurate information or support anyway. Rather, most of the adolescents reported their own peers were the best available source of SRH information and support.

Recommendation

The study’s recommendations are directly related to the findings:

• Advocate for policies and laws that are supportive of SRH rights for adolescents living with HIV
• Promote HIV-positive adolescent support groups
• Integrate SRH and HIV/AIDS services to increase HIV-positive adolescents’ access to SRH services
• Better equip parents and guardians with the knowledge and skills to support their HIV-positive children
• Improve access to non-judgmental counselling
• Fight stigma and advocate for the sexual health and reproductive rights of all people living with HIV, including adolescents.

Banda says the network also believes that further quantitative research is needed to add weight to their findings. If the network can mobilise more resources for research, they would like to perform a similar study among adolescents with HIV in rural settings (who are more likely not to be in school, and may not have as much access to a network of supportive peers).

Developing services

As a result of the study, the network has developed a partnership with Planned Parenthood to train young people living with HIV as peer counsellors. In addition, they have begun setting up adolescent support groups in partnership with the Regional HIV Psychosocial Support Organisation, which is helping them develop psychosocial tools for adolescents with HIV.

“Currently we have quite a number of support groups in Lusaka. We have a specific one with ten year olds and below, and others for older than ten. But even there we realised the needs were completely different. Because some of them are in school, some of them are still children – they don’t understand. Some of them are actually brought in by their parents for us to disclose their status on their behalf. So you are talking to this child and she doesn’t know she is HIV-positive. It was so difficult. This is a learning process for us, but the groups are there, and we are hoping to scale-up through this process. That is why we partnered with an organisation specialising in psychosocial support to develop psychosocial guidelines and tools to assist adolescents,” said Banda.

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