Sunday Times (Johannesburg) - March 22, 2009
Claire Keeton

For 11 years Jo kept a secret from the person she loved most. She was scared of hurting her son and their relationship.

When he was eight months old, she had discovered he had HIV, like her. Her ex-husband, who she believes infected her, left them.

Jo and Sam are both healthy on antiretrovirals but she knew she'd have to tell him. One morning, over the holidays, he asked why he needed daily medication.

"I wasn't ready," she said. "But he said: 'Mummy I'm big now, tell me.' So I told him we are HIV positive and he said: 'M-u-m!'

"He said that he didn't believe it as he was not sick. He wept, and I counselled him.

"Half an hour later he said that he was fine. I thought we would have a miserable festive season, but it was wonderful and we became even closer."

None of Jo's fears about making that disclosure to her child - shared by thousands of parents and caregivers - were realised.

Meanwhile, in another home, a granny was determined to shield her orphaned grandchild from finding out her status. Until one night, the little girl prayed: "Please God, take this HIV away from me."

She already knew, said Dr Marine Vuyovic, a clinical psychologist for Wits Paediatric HIV Clinics, who counselled them.

More and more children with HIV/Aids are surviving on antiretrovirals and disclosure to them has become a big challenge.

Professor Brian Eley, head of the Paediatric Infectious Diseases Unit at Red Cross Children's Hospital, said: "We are moving into an era of more aggressive treatment, and in the next five to six years we will have a higher proportion of children attending clinics who need to be disclosed to."

As many as half a million children are estimated to be HIV positive in South Africa. "Disclosure to children is the biggest issue in our caregiver support groups and a problem at all sites," said Vuyovic.

Yet children attending clinics, with HIV posters and bottles of Aids drugs on the shelves, often know something.

For example, one child playing doctor-patient at a support group for eight and nine year olds with HIV even knew the medical terms.

Vuyovic said: "The one little guy, who was the doctor, said sternly to his 'patient': 'We need to talk. Your viral load is far too high and your CD4 count is too low.' "

Cati Vadwa, director of the Children's Rights Centre in Durban, said: "Children will find out, so parents and caregivers can choose to manage the process or allow it to happen without having a say.

"Disclosure is one of the most critical issues facing children with HIV, and it has huge implications."

The reasons to tell children before they hit adolescence are compelling. Not knowing - or pretending they don't know - fosters anxiety and stress.

Dr Tammy Meyers, head of the Harriet Shezi Children's Clinic at Chris Hani Baragwanath Hospital in Soweto, said: "If children know but adults are silent, they feel a barrier to talking and that is scary. "

Health professionals insist children should be told they have HIV for their physical, mental and social wellbeing - rather than finding out by accident.

One orphan, 12, from White River, even remarked that he "felt free" after his father told him.

Social worker Dorcas Ngobeni said his father had told the boy before he died in December and the boy's mother had already died.

"This boy is so empowered and sharp. He comes to the clinic and draws his own file. And he told his older brother not to tell friends about his HIV," she said.

Most children respond well, even with relief, to disclosure and it enhances relationships, said Vuyovic.

But if adults cover up or lie about HIV, this erodes trust and can be devastating.

Knowing one's status is also important for public health - to prevent infection spreading. Teenagers are more likely to adhere to treatment if they understand its importance.

Despite all the reasons for disclosure, most adults struggle to take this step. Some worry that this knowledge will rob children of their childhood. Others fear their children will tell people and the family will be shamed.

Eley said: "A major concern is that children will carry this information to schools and bring stigma on the household."

But, according to Vuyovic, children usually know who to tell.

Many HIV-positive mothers also fear rejection.

Dr Paul Roux, chairman of Kidzpositive and a senior paediatrician at Groote Schuur Hospital, said: "In my experience, young mothers are frightened to tell their mothers, and they are almost always surprised at the sympathy, warmth and support."

Roux said disclosure should be "a gradual process to fit the facts" and be age appropriate.

At five years old, children can be told about a bug in the body or a crocodile in the kraal, rather than HIV. But ideally, by 11 or 12 years old, depending on their personality and context, they should know they have HIV. To adjust, they need love and support. Peer groups and counselling help, but it takes time.

Vuyovic described disclosure as a foundation to build on. "It's a beginning, not the end of the process," she said.

# For more tips on how to disclose, visit: www.childrensrightscentre.co.za

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