More than three decades into the HIV epidemic, some conversations haven’t become any easier. This is one of them.
Nokuthula* called her eldest daughter into her bedroom.
Her four kids often joked that this was her “courtroom”. Whenever somebody was beckoned, they knew they were in for a serious talking-to. “We’re going to court,” they would laugh.
But the house was quiet now. Nobody else was around.
Nokuthula and her then 21-year-old sat on the edge of the bed, a mountain of scatter cushions piled up behind them.
Nokuthula felt nervous, emotional. For 10 years she’d held on to the secret she was about to let out, and she had no idea how her firstborn — who had just started dating — would take it.
“In this world, we have this disease you can catch when you sleep with someone,” she started. “But I have people who have helped me understand what this thing is. I’m okay with it. I can live with it.”
Condomise, she advised her daughter.
“She was so cool,” Nokuthula, 42, remembers now. “It wasn’t easy but she understood. She said she had no problem with it. As long as I went to the clinic and took my pills, she would support me.”
But three years on, it’s a conversation Nokuthula can’t quite bring herself to repeat with her youngest daughter — the daughter she was pregnant with when she was first diagnosed.
Before prevention of mother-to child-transmission programmes were introduced in South Africa in 2002, up to 40% of babies born to HIV-positive mothers contracted the virus before, during or shortly after birth. Today, just 1.4% of infants born to women living with HIV become infected with the virus.
Nokuthula’s 12-year-old, born HIV negative, has seen her mother taking medication but hasn’t asked any questions about it. Yet.
“I think she thinks it’s for my arthritis,” says Nokuthula. “I don’t think I can talk to her right now. Maybe when she’s 16 or 17.”
Nearly half of the estimated seven million HIV-positive South Africans are now on antiretroviral treatment, according to the United Nations Joint Programme on Aids. But more than three decades into the country’s HIV epidemic, many parents like Nokuthula still struggle to tell their children about their status.
But the study, the first large-scale research to look at the stigma still attached to HIV, also reveals how difficult it is for many parents to break the silence. Among the almost 10 500 people surveyed, nearly one in four people with children admitted they hadn’t told them.
Bridging that gap is where Tamsen Rochat comes in.
“The epidemic is evolving,” she says. “We need to address and respond to the parenting needs of this rapidly growing population. Supporting parents to communicate and educate their children about HIV is central to that.”
A chief research specialist at the Human Sciences Research Council, Rochat together with a team from the Africa Health Research Institute in KwaZulu-Natal developed a programme called Amagugu to support HIV-positive mothers in talking to their children about their status.
“The medical profession’s come a long way in beginning to understand children’s psychological capacity,” says Rochat.
“Over the last three or four decades, we’ve seen more and more research that shows that from nearly as young as six children have a capacity to understand perhaps not that death is permanent, but the basic biology around illness.”
Now, Rochat says many psychologists recommend that parents living with serious illnesses ranging from HIV to cancer be open with their children from as early as possible in communicating what’s happening to their bodies.
But for parents faced with having the conversation, it’s a daunting task. What if they ask how I got it? What if they tell someone else? Why do they even need to know?
Unseen and unspoken consequences
“You have to look at a person as part of a network of social relationships,” says Wits University developmental psychologist Linda Richter.
The director of the university’s Centre of Excellence in Human Development, Richter says that although families are on the frontline of HIV prevention, the focus has tended to be on treating individuals “as if one’s health status, one’s sense of the future and the sacrifices one has to make are unrelated to other people”.
But a parent’s diagnosis affects the entire household. Adolescents who have lost a parent to Aids-related illnesses or are in the care of adults battling these kinds of conditions are more at risk of experiencing mental health problems, feeling isolated from peers and even engaging in transactional sex, reveals 2011 research published in the journal Nature.
And children can pick up on this from a very early age.
“Human beings are built to respond to stressors,” says Richter.
From as early as just 20 weeks old, she explains, a foetus is responsive to shocks in its environment. “It’s called stilling — if there’s a loud noise like a gunshot in the house, something that will shock the mother, that stress response will hit the baby and it will still, the metabolism will slow down.”
A two-year-old toddler can feel embarrassed or shy, and notice when others are anxious or sad.
They know when a parent is angry and that they must be still and quiet,” says Richter. “They’re picking up the emotional tone of a household very quickly.”
By the time they reach primary school, children are able to start piecing together concepts about illness and mortality — and this was the age group the Amagugu intervention targeted.
“We call them little scientists at that age,” says Rochat. “They have these radars: even if you manage to hide your medication and you have these extravagant stories about where you go once a month when you have to visit the clinic, they will experience some shift in you — and that’s what we believe drives the poor mental health outcomes in children.”
The conversation was not going well. Admittedly, Nomusa hadn’t picked the best moment. But with their father lying on what the whole family had come to assume was his death bed, she wanted her two teenagers to know that she also had the virus in her body — and that she was fine, healthy even. Everything was going to be okay.
Her daughter, then 19, sat there in disbelief. Her 17-year-old son got up and walked out. “Was it true, Mom?” he asked her when he finally came home the next day.
According to the health department’s HIV disclosure guidelines, telling a child about one’s own HIV status is a process that should start as early as possible, progressing in detail as a child’s capacity to understand the virus grows.
A five-year-old can grasp the concept of germs and that they need to take medication daily — what the guidelines call “partial disclosure”. But a 12-year-old can understand not only that they have HIV, but also how it’s spread and the implications of infecting someone else.
Covering up a child’s HIV status, say the guidelines, does more harm than good.
There is no comparable framework for HIV-positive parents who want to disclose their own status to their children but Marnie Vujovic, a clinical psychologist at the non-profit Right to Care, believes many of the same rules apply.
“As they mature, children are able to take in more and more information and absorb it in a meaningful way,” she says. “Parents can get a pretty good sense of where a child is just in a conversation — and often they’ll give you natural opportunities to tell them more just by asking questions. That’s a perfect time to say, ‘Okay this child needs more information. He or she has seen something and is concerned about it and I need to answer it honestly and openly as I can rather than side-stepping the issue.’”
The Amagugu intervention sought to teach the participating mothers an age-appropriate way of telling their HIV-negative kids about their status, with toys and games specifically targeted at six- to 10-year-olds.
A sticker activity was used explain how HIV attacks a body: the virus becomes angry red dots, the CD4 cells — bodies that typically help the immune system’s response — are depicted as spears trying to fight it off, and antiretrovirals (ARVs) emerge as green shields.
A memory card game helped mothers to explain their monthly clinic visits and everything the children could expect to see there: doctors, nurses, ambulances, needles.
And throughout the conversation, the mothers were trained to keep the emphasis on their love for the child — to keep their arms wrapped around their shoulders, to speak calmly and reassuringly.
“For this age group of children, the disclosure goes better with more preparation and if mom is more emotionally contained,” says Rochat. For the mothers, it meant counselling sessions before their disclosure to help them to come to terms with their own narrative about how they had contracted HIV.
“You don’t have to tell your kids the whole truth,” says Rochat. “They don’t have to know if you were raped or that your partner cheated on you.”
Instead, the counsellors helped the mothers to craft the stories that were “strength-based and that reflected the love she had for the child” — a story that was true enough, without adding to the hurt.
It would be another 16 years before either one of Nomusa’s teens believed she had HIV — and even then only after she began treatment following the government’s decision last year to provide medication to all HIV-infected people regardless of how sick they are. Previously, most people had to wait until their CD4 count — a measure of the immune system’s strength — fell to 500 before they could start taking ARVs.
She’s been trying to do things differently with her three youngest — aged 10, 14 and 16 — since participating in the Amagugu study, gradually dropping the topic into conversation and playtime.
“It’s been much easier,” she says.
The children don’t seem to believe her just yet. But every few days, they come back with more questions: Did Mommy really mean it? If she has HIV, how come they don’t? The youngest two have since joined her on trips to the clinic and know to be careful around open wounds. Every evening, her 10-year-old reminds her to take her medication.
But that kind of “parentifying” can be concerning, warns Vujovic: “Children need to be able to enjoy life, to play — not be stressed out about whether their parent is going to survive or not.”
Meanwhile, a tactful disclosure provides a real opportunity to educate children on HIV and just how well treatment can work.
“There’s this huge fear that ‘I might lose this person, this person’s going to die’,” says Vujovic. “And I think a really important aspect around disclosure is to reassure — to help children understand just how efficacious the medication is. “It does seem like a sort of modern concept, but we’ve increasingly seen the benefits of families communicating openly,” she continues. “We know there are a number of taboos around having discussions about sexual and reproductive health — but we also know that young people who are able to talk openly with their families are much less likely to engage in risky behaviours.”
‘A lot of moms still worry about stigma. We can’t be naive about that’
At 13, Sakhile* is fairly typical for his age.
He likes football and accounting, and laughs easily with his siblings — even as he smiles shyly in the company of adults. Every day after school, he does his homework, washes the dishes and cleans his uniform.
At exactly 8pm, just as Generations starts up on SABC 1, he fetches a glass of water and a large, pinkish tablet and takes them to his mother, Zanele*.
He’s coy about what the tablets are for, but he knows. He started asking questions a few years ago when the Amagugu counsellors began visiting the family homestead. Now he’s also learnt about HIV in school. He knows you can contract it by having sex without a condom and he knows that you can get it from an open wound. That’s how his mom said she got it when he asked. She said she wasn’t wearing any gloves.
When she’s ill, he and his five older siblings cook her porridge and fetch her water.
“It helps me to know that she has HIV,” he says quietly. “When she passes away, we must know what killed her, what she was suffering from.”
Sitting next to him on a grass mat on the floor, her twin granddaughters clambering across her lap and five more shrieking loudly in a game of catch outside, Zanele, 51, is fiercely protective of her family unit.
She doesn’t like this community. When the Amagugu counsellors first came to visit her, the whispers among her neighbours left her feeling ostracised. “Bad people,” she calls them.
But she credits the programme with helping her to learn to let it go.
“I don’t care what people say, as long I’m here with my family. We’re strong. Our problems are our problems. Everything stays here.”
“A lot of moms do still worry about the stigma. We can’t be naive about that,” says Rochat.
Just who a child might tell about a parent’s HIV status was a concern that came up again and again.
To combat it, the Amagugu team introduced a disclosure “safety hand” — a contract between the mother and the child about who it was safe to speak to about her status.
Then they began to notice a change in the children’s behaviour.
“They didn’t want to talk to us anymore,” recalls counsellor Samukelisiwe Dube. “We asked ourselves what had happened, why they didn’t want to talk. Then we realised it was the safety hand.”
The children were sticking to the agreed list of names — and the counsellors’ names weren’t on it.
“After that we had to ask the mothers to make sure that we are also included,” says Dube.
When the findings from the Amagugu intervention were published in the medical journal The Lancet in August, they showed a significant increase in disclosure.
Nearly 90% of the 235 mothers taking part in the training revealed their status to their children. Among mothers who were not part of the programme, only 56% could say the same
The researchers noted improvements in both the mothers’ and their children’s mental health, better adherence to treatment programmes, and an overall decrease in parenting stress. The Amagugu mothers were also 27 times more likely to take their children with them on their clinic visits.
“Communication is a positive thing,” insists Rochat. “It builds strengths, it builds relationships, and it gives the mother an opportunity to be the hero in her family.”
Even then, some mothers still didn’t think their children were ready to know.
“For all the training and tools we provide, sometimes there has to be this leap of faith, to just trust that it isn’t going to go badly,” says Rochat.
When Zanele told her older children about her diagnosis back in 2004, when she was pregnant with Sakhile, she wanted them to know they could always come to her with their issues.
Now, Sakhile’s big sister keeps track of Zanele’s monthly visits to the clinic and, although the other older children are struggling for work, they always put a little something aside to make sure Zanele has food in her stomach before taking her pill each night.
Telling her family, she says, saved her.
“I’m so proud of my life. As long as I’m with my family, I’m okay.”
* Names have been changed