Practical support and psychosocial interventions are desperately needed to help those dealing with the fallout of AIDS, says Lucie Cluver.
I'm sitting on a piece of corrugated iron in a dusty South African township, with the smell of burning rubber in the air. A set of graphs comes to life for me. A 15-year-old girl traces patterns in the sand as she tells me how she found out she is HIV-positive. Lindiwe is one of 12 million children in sub-Saharan Africa orphaned as a result of AIDS. Her parents were said to have died of 'TB and bewitchment', but their symptoms confirmed that their deaths were among the 850 caused each day by AIDS in South Africa.
HIV/AIDS turns 30 this year, and so will a million or so of the children it has orphaned. It is not yet clear what the epidemic's long-term impact on this generation has been, or what it will be for all the other youths affected. Lindiwe is part of the developing world's first longitudinal study of the impact on children of parents made ill or killed by AIDS.
Beginning in 2005, a group of social scientists, psychologists and social workers followed 1,000 girls and boys in South Africa over four years — including those orphaned by AIDS, those orphaned by other causes and those whose parents were still alive. As study director, I had 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. I had also underestimated the extent to which their lives would offer a window onto the complexities of the HIV epidemic.
For 30 years, the scientific community has fought the war against HIV/AIDS on many fronts: prevention, treatment, the elusive cure. Much has been achieved: 37% of sub-Saharan Africans who need antiretrovirals are receiving them compared with 2% in 2003.
But research is now revealing a new and daunting battlefield — the multiple social consequences of AIDS on families, especially children1. With more than 22 million people in sub-Saharan Africa infected with HIV, many of whom are parents, some 70 million children are likely to be enduring the consequences of living with people sick from AIDS in this region alone.
Along with other studies, the data we have collected over the past seven years (for the four-year Orphan Resilience Study and subsequent projects) show that AIDS in a family has major and long-term impacts on children's development and psychological health.
In the Orphan Resilience Study, my team and I asked children whether they were experiencing symptoms such as flashbacks and nightmares. Their responses revealed that children orphaned by AIDS were 117% more likely to be suffering from post-traumatic stress disorder than children whose parents were alive, and also — to our surprise — 67% more likely than children orphaned by other causes, including homicide, suicide and cancer2. Researchers in Tanzania, Uganda, Ethiopia, Zimbabwe and China have similarly found heightened psychological distress among children orphaned by AIDS3.
'Orphanhood' starts long before a child's parents die.
Moreover, our larger, national study in South Africa suggests that 'orphanhood' starts long before a child's parents die. Since 2009, we have interviewed 6,000 children and 2,600 of their caregivers (not necessarily their parents), in six urban and rural sites, as part of the National Young Carers Study (http://www.youngcarers.org.za). Our preliminary findings indicate that children with caregivers sick from AIDS are just as likely — if not more likely — to suffer from a lasting psychological disorder (depression, anxiety or post-traumatic stress disorder), and just as severely, as children orphaned by the disease (see 'Cause for distress'). Moreover, 50% more children with caregivers affected by AIDS are afflicted with these disorders than those whose caregivers have other chronic illnesses.
A combination of social factors seems to make having AIDS in a family worse for children than having a death or chronic illness due to other causes. People gossip about the family; the children may be bullied or excluded from the community; and infected caregivers are often severely impoverished and depressed4. “They say that my mother is a prostitute and I will die just like her,” one 10-year-old girl told us5.
Such high levels of psychological distress have severe knock-on effects. One is on education. Several studies, including an analysis of demographic and health-survey data collected by governments in ten sub-Saharan African countries6, have shown that orphans do not attend school as much as children with living parents.
Our findings paint a similar picture. In a pilot study, we interviewed 850 children, asking questions such as: “How's school?” Forty-three per cent of children living with someone ill with AIDS said they couldn't concentrate due to worry about the sick person at home: one 14-year-old boy said, “I can't stop thinking about my mother. She looks like she is going to die like my father.” Forty-one per cent missed days at school or had dropped out entirely to care for adults at home.
Children may also pick up infections through toileting the sick person, washing wounds or cleaning soiled bedclothes. As part of the National Young Carers Study, we surveyed more than 5,000 children and caregivers in the KwaZulu-Natal province. Among children living with healthy adults, 4% had symptoms of pulmonary tuberculosis. For those whose caregivers were infected with HIV, this rose to 17% (ref. 7).
Other knock-on effects are higher levels of physical and emotional abuse. Preliminary unpublished findings from the Orphan Resilience Study indicate that 5% of children in healthy families are physically abused (slapped, punched or hit with a sharp object at least once a week) and 8% are emotionally abused (told at least once a week that they are lazy, stupid, or threatened to be sent out of the house or cursed by an evil spirit). For children living with a caregiver who is sick with AIDS, the numbers rise to 12% and 23%, respectively.
Girls in families affected by AIDS are particularly likely to engage in sex in exchange for money, school fees, transport or shelter. Newly analysed data from the Orphan Resilience Study indicate that girls between 15 and 24 years old in healthy families have a 2.8% chance of being exploited in transactional sex. This climbs to 19% for those with carers sick from AIDS. Among girls with AIDS-sick carers who also experience physical or emotional abuse, 46% say that they have had transactional sex.
The long-term effects of these depredations have yet to be quantified. But various studies worldwide show that school attendance correlates with a child's chances of getting a job later on. Abuse during childhood is associated with cognitive and social changes that persist long into adulthood — for instance, a smaller hippocampus and reduced capacity for learning and memory8. Certainly, the data from our Orphan Resilience Study indicate that psychological disorders worsen as children orphaned by AIDS become young adults, whereas for other orphans and children whose parents are alive, they remain stable.
What can be done to lessen the devastating effects of the AIDS epidemic on upcoming generations?
Happily, the South African government is enthusiastic about implementing research-guided policies for children. The South African government's departments of social development, health, basic education and agriculture are incorporating the results from our studies and others into national planning policies, such as the 2009–2012 National Action Plan for Orphans and Other Children made Vulnerable by HIV and AIDS.
The Department of Social Development is also piloting programmes involving life-skills training for affected children and the training of community care workers. For instance, care workers are being taught how to help families with 'succession planning' — ensuring that children will be cared for after their parents have died.
Intervention and support
Non-governmental organizations such as the Regional Psychosocial Support Initiative, headquartered in Randburg, South Africa, which serves 13 countries in east and southern Africa, are creating training and support programmes for children living in homes affected by AIDS, based on the results of studies in South Africa, Kenya and Tanzania. These programmes include workshops to teach children caring for sick adults how to lower their risk of infections.
Meanwhile, major development organizations such as the Swedish International Development Cooperation Agency and UNICEF are using and commissioning research to design and improve interventions, including schemes that provide families with money or food.
Yet there is far more to be done. Children's access to tuberculosis testing must be improved. Also, more parents infected with HIV should be taking antiretroviral medication: a study in Kenya, published by US economists in 2009, showed that children were better fed and had better attendance at school when their parents, unwell with AIDS, started taking antiretrovirals9 (see page 29).
Research is needed to understand how to reduce child abuse, and how to make it easier for children to attend and re-enter school — whether by helping them catch up on missed studies, dropping school fees or providing free school meals. Lastly, evidence-based psychosocial interventions, such as cognitive behavioural therapy and support groups, are urgently needed for children orphaned by AIDS or living with sick adults.
For such interventions to be effective and accepted, they must be developed through the collaboration of researchers, governments, communities and affected families. So scientists need to focus on the messy, multifaceted social context of the epidemic, not just on the disease itself.
Support programmes must also be properly resourced. Fortunately, organizations such as Save the Children, UNICEF and USAID are already partnering with the governments of South Africa, Swaziland, Malawi and Ethiopia to ensure that essential psychosocial interventions are provided. These include training community care workers in bereavement support.
The evidence as to which interventions are effective is still thin, but we are not starting from scratch. Last year, for instance, a collaborative study involving health practitioners from Uganda and Sweden showed that depression, anger and anxiety lessened in children who had lost one or both parents to AIDS if they had access to support groups and intensive medical care10.
Lindiwe has told only her brother and us about her diagnosis. She asks whether she could call us if she needs to talk to someone. What Lindiwe craves is affection, acceptance. Her boyfriend loves her but in her township, love is Russian roulette: HIV prevalence in her age group is 25%.
A few days after talking to Lindiwe, I spoke in a government meeting in Johannesburg. I put up a graph showing how non-stigmatized children with enough to eat have a 19% risk of developing a clinical-level psychological disorder; children who are stigmatized and hungry have an 83% risk4. I looked up at the audience of senior officials. A few of them had tears in their eyes. We must win this battle.
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Cluver, L. et al. Infectious disease and TB co-occurrence amongst children with AIDS-affected caregivers. Presented at 5th South African AIDS Conference, Durban (2011).
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Cluver, L. Children of the AIDS pandemic. Nature 474, 27–29 (2011). https://doi.org/10.1038/474027a
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