Paediatric HIV care is high on the agenda of most HIV programmes today, but less talked about are the social aspects of life as a child born with the virus, and later on, as an adolescent facing the challenges of relationships and sexuality.

"The focus has been on the medical aspects of sexuality, but it goes beyond the physical," said Dr Harriet Birungi, an associate with FRONTIERS, a reproductive health programme of the US-based Population Council. "Sexuality is emotional as well a source of happiness, person fulfilment and well being, and it's important for us to begin to address the needs of these adolescents as a whole."

Birungi has been part of an as yet unpublished study on the needs and desires of HIV-positive adolescents in Uganda. The study, co-funded by the Ford Foundation and the United States Agency for International Development, was conducted in partnership with 17 Ugandan groups, including The AIDS Support Organisation and the MildMay Centre. It involved 735 adolescents aged between 15 and 19.

According to the Population Council, with the advent of life-prolonging antiretroviral (ARV) medication, the proportion of children perinatally infected with HIV who are living on into adolescence is increasing, with many of them expecting to become sexually active and even have children."
 
Looking for love

"These children have gone through some hard times, with many of them losing their parents, and many on ARVs," Birungi told IRIN/PlusNews. "It is important to address their needs and ensure they have the right guidance as they go into adulthood.

"About 67 percent of these children have no biological parents, so they are often taken in by extended family and in that process they are separated to spread out the cost of raising them," she noted. "So you find that the boyfriend-girlfriend relationship is, for many of them, the only concrete expression of love they have ever had."

She added that many of them were excluded from education because the families that took them in expected them to die and therefore perceived education to be a waste of money.

"Outside the school environment, it is difficult to make friends, and they are also outside a protective environment and vulnerable to sexual advances from older men," Birungi said. "They often end up as married adolescents or single parents, which complicates their lives further."

Despite these difficulties, the research found that these teens have the same desires and dreams as their HIV-negative counterparts.

"About 34 percent of them are sexually active, and among those who are not, the majority desire to have sex at some point," Birungi said. "Some want to have children, but others want to pursue careers before settling down."

Discordance, she added, was common, and HIV-negative people often continued to push for a relationship even after discovering the status of the teens.

"The study found that the teens desire to be responsible and are very afraid of infecting others," she said. "The possibility of this makes some of them very afraid of sex."

She said the Population Council was currently developing interventions to address sexuality, love and desire among HIV-positive adolescents, which would include counselling on issues like disclosure of status and safe sex, as well as family planning.

"There is a need give them support and practical guidance so they can live full lives that are as normal as possible," Birungi said.