The scars of a tortured generation
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The Aids-affected children in Dr Lucie Cluver’s movie don’t want to talk about soccer or music. Instead, they want to tell the world about the heartache of losing their parents, the stigma they battle, abuse they endure and the gangs eager to exploit their vulnerability.
The mini-movie, devised and directed entirely by the children, is in itself a measure of how Cluver, of Oxford University, and her team of researchers and field workers have succeeded in gaining the trust of thousands of children affected by the epidemic.
“This movie is completely child-led,” explains Cluver, who is leading the developing world’s first longitudinal study into the impact of Aids on children who care for their parents when they fall ill or have lost their parents to the disease.
“The kids have amazed us – we thought they’d want to talk about soccer and music, and instead they want to deal with major issues.”
Cluver, in a recent commentary in the science journal Nature, marking the 30th anniversary of the first description of Aids, writes how she and her team, working with children and their caregivers from KwaZulu-Natal’s remote Manguzi to the Cape Flats, have become their confidantes.
“As study director, I’d never anticipated that our team’s repeated visits would make us confidantes for these children, whose opportunities to talk about the disease are constrained by stigma,” she says.
“I had also underestimated the extent to which their lives would offer a window on to the complexities of the HIV epidemic.”
Through her Young Carers Project, a ground-breaking study of 6 000 children living in Aids-affected families across South Africa, Cluver and her team are highlighting the hidden impacts of the epidemic on the millions of children caring for ailing parents and relatives.
The project is a collaboration between the universities of Oxford, KwaZulu-Natal, Cape Town and Wits; the Department of Social Development with the support of the departments of Health and Basic Education; the National Action Committee for Children Affected by HIV/Aids; as well as NGOs Cape Town Child Welfare and Tholulwazi.
There is little doubt of the devastating fallout of Aids on the development of children and their psychological health.
New findings from three studies – The Young Carers project; another longitudinal study of 1 050 Aids orphans, children orphaned by other causes and non-orphaned children; and a third illuminating study on TB – reveal just how battle-scarred South Africa’s Aids-affected children are.
Cluver and her fellow researchers had asked children orphaned by Aids whether they were having flashbacks or nightmares, with their research revealing how these children are 117 percent more likely to be suffering from post-traumatic stress disorder (PTSD) than those whose parents are alive. More than half were more likely than children orphaned by other causes, including cancer, murder and suicide, to develop PTSD.
Other disturbing results show how children living with Aids-sick caregivers are three times more likely to suffer physical and emotional abuse at the hands of their caregivers, how girls are more likely to engage in sex for school fees, transport to school or food, and how the plight of children caring for their relatives forces them to miss school or drop out entirely.
Cluver told the Saturday Star that there are two core messages arising from her research.
“First, that the challenges are even greater than we had imagined,” she says.
“It’s not only orphaned children, but also children with Aids-affected caregivers who are experiencing massive emotional distress, stigma and poor health.”
The second message is that there is hope, she says.
“There is real commitment on the part of the government and NGOs such as Unicef, the Regional Psychosocial Support Initiative and Save the Children.
“There is also massive commitment and support from communities and from local councillors and traditional leaders, street committees, pastors and local people.”
In her Nature commentary, Cluver notes how, for the past 30 years, the scientific community has fought the war on HIV/Aids on many fronts, including prevention, treatment and finding a cure.
But research, she says, is now revealing a “new and daunting battlefield – the multiple social consequences of Aids on families, especially children”.
With more than 22 million people in sub-Saharan Africa infected with HIV, many of whom are parents, about 70 million children are likely to be enduring the consequences of living with people sick from Aids in the region alone.
In South Africa, Cluver estimates that a staggering 5 to 10 million children have carers who are sick from Aids.
Their courage astonishes her. “Sometimes I’m amazed at their bravery and commitment. How do they do it? I just don’t know. They are incredible kids and they deserve our respect and admiration.”
Just how the deprivation, abuse and devastating loss will affect these children’s ability to become loving, compassionate adults, remains unknown.
“I don’t think we know yet,” Cluver says.
“Ours is the only study to follow Aids-affected children over a long period – and we only have four years of data. What we want to do is to keep speaking to these kids as they become adults and parents themselves. But in many ways the children I have known are even more compassionate than others.
“Their teenage years are spent caring for someone who they love deeply and who they have to watch getting sicker and sicker.
“The kids who we work with have so much love and affection for the sick person, for their brothers and sisters, and for other kids in their situation.”
Using colourful, confidential questionnaires that are peppered with teen symbolism, Cluver and her team have, since 2005, delicately probed the children’s access to school, meals, grants, care duties, whether they face abuse or engage in risky sexual behaviour.
Preliminary findings from their orphan resilience study indicate that children living with Aids-sick caregivers are about three times more likely to report physical or emotional abuse, but not sexual abuse.
“This suggests that what we’re seeing is not in any way malicious caregivers.
“They don’t want to harm the children, but that it may be that the stress associated with HIV/Aids – poverty, stigma, illness, looking after extra orphaned children – just makes it harder and more stressful to be a parent,” Cluver explains.
But what Aids-affected families need is support, not condemnation.
“One important thing is antiretrovirals (ARVs), another is social grants to help support affected families. But it’s also important to have programmes that help the mental health of caregivers and children together, and to help them work as a family to support each other.”
Abuse and extreme poverty drive increased transactional sexual exploitation among Aids-affected young people. Cluver’s results show how girls between the ages of 15 and 24 in otherwise healthy families have an almost 3 percent chance of being exploited in transactional sex – a figure that jumps to 19 percent for those with carers sick from Aids.
Results also show that youngsters affected simultaneously by Aids-orphanhood and having an Aids-sick caregiver are six times more likely to experience transactional sex than in healthy families.
There is a need to address family and poverty risk factors for young people to combat the risk of transactional sex, according to Cluver’s research.
Much more emphasis needs to be placed on the mental health of youngsters, including bereavement support, according to Cluver.
In 2005, she and her team found that Aids-orphaned children scored significantly higher on measures of depression, anxiety and PTSD than non-orphans and children orphaned by other causes.
When they revisited in 2009, the Aids-orphaned children had got worse. “We thought they may be better over time, but we were sadly wrong.”
Orphanhood, she points out, “starts long before a child’s parents die” – typically preceded by a loved one’s sickness, and the resultant bullying, abuse and stigma.
One 10-year-old girl remarks: “My friends laugh at me as my mother is sick and they also gossip about me. I feel not right about that in my life.”
Cluver points out that other studies have shown that HIV-positive parents have much higher levels of depression and anxiety and caregivers of orphans have poorer physical and emotional health than caregivers of other children.
Until now, no studies have examined educational impacts for children in Aids-affected homes, homes where parents are sick from other causes and healthy homes.
“Children in Aids-affected homes have major negative educational impacts… Children in homes where parents are sick from other causes also have negative educational impacts but not to the same extent.”
Cluver’s findings show that 43 percent of children living with a relative or caregiver sick from Aids could not focus on school simply because of anxiety over their condition.
Almost the same percentage of children either missed days to care for their loved ones, or missed days at school.
A 12-year-old boy reveals in his questionnaire how he is consumed with worry about his mother.
“I don’t concentrate at school. I am worried about my mother. She looks as if she is going to die like my father.”
An 11-year-old girl tells how there is no food in her home to take to school.
“Since my mother is sick, I don’t bring nothing at school. I eat nothing. I just drink water during the lunch break.”
Very little, too, is known about the physical health outcomes of living in an Aids-affected family.
Cluver’s findings show how children with an Aids-sick caregiver are five times more likely to have tuberculosis than children with healthy carers, but only 4 percent are tested.
Once tested, however, children showed good treatment outcomes.
In the next six months, Cluver and her team of researchers and field workers hope to gain more information including about how ARVs can help, with initial findings showing that children have much less work to do when their parents or caregivers are healthy.
“Other research in Uganda shows that when parents start ARVs, their uninfected children’s nutritional status and school attendance improve,” she explains.
But as Cluver remarks in Nature, researchers, governments, communities and affected families must all play their part. “So scientists need to focus on the messy multifaceted social context of the epidemic, not just on the disease itself.”
Much more work lies ahead.
“For us the next major step in our research and in our work with the government is to test programmes to help Aids-affected families. We’re just now starting to plan how best we can do this – and we’ll be working in close collaboration with Aids-affected children, caregivers, local communities, traditional leaders and NGOS.
“It’s absolutely essential that we know what works so that we can use our limited resources to do the best for these kids.
Cluver has hope.
“This project has taught me just how united South Africans can be when the issue is important enough. And there is no question of the importance of this issue.”