New Research Carves Window Looking into the Lives of AIDS Orphans

23/08/2011 - An ongoing study by a team of researchers led by an Oxford University academic is breaking new ground in studying the lives of children affected by AIDS.

With an original study on children orphaned by AIDS underway, Oxford University researcher, Dr. Lucie Cluver, is discovering the toll that the disease takes on children who have spent time caring for their ailing parents.

Dr. Cluver and her team of researchers are breaking down knowledge barriers by conducting the world’s first-ever longitudinal study on the impact of AIDS on children who have had to care for their HIV-infected parents, or who have had to raise themselves once their parents have passed away.

The Young Carers Project is a study of 6,000 AIDS-affected South African children aimed at discovering any hidden effects of the pandemic on them and their families. Dr. Cluver’s present study, combined with two previous studies involving TB-affected children and more than 1,000 orphans (including AIDS orphaned), has shed much light on the situation of AIDS-affected children in recent years.

Four universities, the South African government and non-government partners are supporting the project. The Oxford team is joined by KwaZulu-Natal, Cape Town and Witwatersrand universities, as well as the Departments of Social Development, Health and Basic Education. On the civil society front, the National Action Committee for Children Affected by HIV/AIDS, Cape Town Child Welfare and Tholulwazi will also be a part of the project.

“This movie is completely child-led,” says Dr. Cluver, describing a child-driven documentary project. “The kids have amazed us,” she explained, expressing her surprise at the maturity of topics important to the youngsters involved in the study.

“We thought they’d want to talk about soccer and music, and instead they want to deal with major issues.”

“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.”

Working with AIDS-affected children and their caregivers from different regions of South Africa, from the Cape Flats to Manguzi in KwaZulu-Natal, the researchers found themselves the unlikely confidantes of the children who were eager to discuss the heavily-stigmatized disease.

In fact, Dr. Cluver and her associates did not expect to learn so much about the disease through the children.

It is evident that AIDS orphans are in need of psycho-social support, as in 2005, Dr. Cluver found them to be more prone to depression, anxiety and PTSD than other children. As of two years ago, the situation had deteriorated, with children facing social stigma and bullying from their peers because of their parents’ deteriorating condition, proving that the state of orphanhood begins long before the death of a parent.

The results so far show that AIDS orphans are 117 per cent more likely to suffer flashbacks and nightmares, evidence of post-traumatic stress disorder (PTSD), as compared to children without parental care, or even children orphaned by other causes.

More recently, research as shown that 43 per cent of children with an AIDS-sick caregiver have difficulty concentrating on their schoolwork because of anxiety about this person. What’s more, children being cared for by guardians with AIDS are more likely to be physically and emotionally abused by these guardians, as stress in the family mounts. Girls in this category also tend to be more likely to engage in transactional sex (such as for school fees, transportation or food). Some children may miss out on school altogether.

Though these challenges are daunting, Dr. Cluver’s team remains resilient. Their next step is to work in collaboration with the government, civil society and children to improve care.

“It’s absolutely essential that we know what works so that we can use our limited resources to do the best for these kids,” says Dr. Cluver.

Globally, there are more than 22 million people in Sub-Saharan Africa living with HIV. An estimated 70 million children are affected by AIDS in one way or another, with many of them living in South Africa alone, where 5-10 million children have guardians sick with AIDS.  The majority of the country’s 3.4 million orphaned children (1.9 million) have been orphaned by AIDS.