New platform for action on adolescent AIDS must tackle disclosure

As leaders from around the world gather in Nairobi to launch ‘All In’ to end adolescent AIDS, Lucy Maroncha explores the issue of HIV disclosure, a key issue this initiative must tackle.

As leaders from around the world gather in Nairobi to launch ‘All In’ to end adolescent AIDS, Lucy Maroncha explores the issue of HIV disclosure, a key issue this initiative must tackle.

Imagine finding out you were born with HIV while going through the physical and emotional challenges of puberty. In Kenya many parents of HIV positive children hide their status from them as they grow up. I have seen how this can have devastating consequences for young people when they finally discover their status, causing serious emotional trauma.

Clinical experts agree. George Abungu, a psychological counsellor, says children have high expectations and, when they discover their HIV status, they imagine their dreams are shattered. “This can make children withdraw and sometimes get into severe depression,” he says.

So why are parents still not disclosing their children’s status? Parenting is never an easy job and parents of children living with HIV face extra tensions and pressures. These include a fear of harsh judgment or embarrassment in communities where talking about sex is still taboo, the misconception that HIV is only sexually transmitted, the belief that young children can’t cope with knowing their status and a fear of them being stigmatised by their peers. Parents also fear rejection from their children and a loss of trust. These are tough issues but we must face up to them and support parents to be open with their children. The alternative is to risk losing them all together.

Parents’ fears

Isa Mayaka (52), from Kisii County in Nyanza Province, tells me how her son got into drugs when he learned that he was infected with HIV aged 14, after falling sick while in school. The school matron had taken him to hospital where a clinician suggested a diagnostic HIV test.

“I regret I did not disclose his status to him before but I feared he would discuss it with friends in school and they would discriminate against him,” she says. As a single mother, Isa was also concerned. “I thought he would think I am promiscuous,” she says.

Isa’s story is far from unusual. A study of HIV disclosure to children conducted in Western Kenya showed that the rate of disclosure was only 26 per cent and varied significantly by age. Children who discover their HIV status on their own are likely to suffer distress and blame their parents for concealing such information.

Isa says it took three years for her son to accept her again as his mother. “Any parent who hasn’t disclosed their children’s HIV status should do so immediately to avoid disagreement later in their children’s lives,” she says. She adds that if a parent lacks confidence to speak to the child, an HIV counsellor can be present during the disclosure session.

Thankfully, her son has joined a rehabilitation centre and is receiving help to come to terms with his HIV status, as well as quitting drug use.

Benefits of early disclosure

Recent research has shown that, contrary to Isa’s fears, mothers who disclose their children’s HIV status to them have better bonds, becoming confidants and even treatment buddies.

Disclosure guidelines recommend that parents of an HIV-infected child and clinicians should develop a disclosure plan while the child is young, and talk to them about their diagnosis over time. By the time they are 11 they should be fully aware of their status, before puberty brings changing bodies and emotions. As they become young adults they should be able to make informed decisions about treatment adherence and avoiding risky sexual behaviours.

The Kenyan government has invested in prevention education and Dr Hellen Barsulai, a Kenyan sexual and reproductive health researcher, says: “By now, everyone should have the knowledge that HIV is a viral infection and communities should stop attaching stigma to people living with HIV. If all parents went through thorough disclosure sessions, discussing their children’s HIV status would not be an issue.”

Tackling stigma

Despite Dr Barsulai’s assertions, discussing a child’s HIV status with them is always going to be a difficult conversation. Parents need support from their communities and, although things have improved in some places, stigma still creates barriers to honest conversations.

“It’s a pity some communities still discriminate against people living with HIV, making it difficult for people to disclose their status without guilt,” says Joseph Otieno, programme officer with the Kenya Network of Women with Aids (KENWA) in the central region.

Some HIV organisations, including KENWA, have developed programmes and support groups to help parents with disclosure. Joseph argues that community engagement in understanding stigma and disclosure is imperative. This is because if the community understands there is nothing embarrassing about being infected with HIV, it will make it easier for those living with HIV to be open about their status.

Disclosure sessions

A person who has gone through disclosure sessions is better placed to speak about HIV to another person since they are taught how to deliver the message without scaring or offending the listener.

After he was widowed, James* attended disclosure sessions at KENWA and was able to comfortably go through topics such as modes of transmission, prevention and treatment with his 13-year-old daughter. “She is now over 18 years and has become an adherence counsellor. I owe this to the sessions at KENWA,” he says.

Risk of new infections

Concealing a young person’s HIV status from them not only causes emotional harm but also increases the risk of other people becoming infected.

Aganda*, 36, from Kisumu county in Western Kenya, tells me how she discovered she had been born with HIV a month before her wedding, aged 26. “My then would-be-husband and I were finalising the plans of our wedding in town when he jokingly suggested we take an HIV test from a mobile voluntary counselling and testing van,” she says. They were both sure they were HIV negative.

“When my result was positive, the safest place – or so I thought – was in my mother’s arms,” says Aganda. When her mother explained that Aganda had been born with HIV and she had kept it all to herself, not only was Aganda’s heart smashed but her relationship with her fiancé and his family was also destroyed. “My mother’s irresponsibility tore my dreams apart and would have caused an unsuspecting person to get infected,” she says.

With around five million adolescents infected with HIV worldwide, according to a UNAIDS report, communities must be more responsible in understanding and accepting people living with HIV as professionals, family members and respected society members. The government and HIV organisations must invest more in education to eliminate the stigma which is still rife among Kenyan communities. It is imperative that we build a supportive society in which parents can talk to their children openly about their HIV status.

*Names changed

Read 16-year-old Ugandan Sarah Acibo’s story: why I’m not scared of knowing my status