A review of research literature - 81 published and unpublished papers, books and reports - on the impact of HIV/AIDS on children in Africa has found significant gaps and biases that shape responses to AIDS-affected children.
Most research is based on an assumption that an epidemic of orphans is a threat to society, concludes the review. "AIDS orphanhood" is conceptualised as a disease in itself, a breeder of criminals, militia and sex workers. This idea, echoed by the media, reinforces and perpetuates the stigma and discrimination experienced by AIDS-affected children.
"So, stigma in life is replicated in research," said author Jo Stein, principal scientific officer at the AIDS and Society Research Unit of the Centre for Social Research at the University of Cape Town (UCT).
There is little empirical evidence for this assumption, the study found. Rachel Bray, a researcher with UCT, argues that these "apocalyptic predictions" are unfounded, ill considered and a self-fulfilling prophecy. Her research with street children in South Africa shows that it is not growing up without an obvious caregiver or role model that makes children prone to violent behaviour, but living in communities that exclude, abuse and abandon them.
The danger is not orphanhood, explained Bray, but the way society deals with parentless children. The emphasis of responsibility should be reallocated away from the children to society and, critically, to government.
"It's our own perception of parentless children as a problem - we as adults and communities should help those kids, because social parenting is as important as biological parenting," added Stein.
Child-headed households or other living arrangements without adult authority threaten conventional wisdom on appropriate care and control of children, the review said.
Nine studies on the psychological adjustment of children in AIDS-affected families showed that they do not exhibit more violent behaviour but more depression, anxiety, psychosomatic reactions and post-traumatic stress disorder symptoms.
The numbers presented by UN agencies and development organisations lends urgency to the crisis: 13.2 million children under the age of 15 have lost one or both parents, and 90 percent of these live in sub-Saharan Africa, according to UNAIDS. But Stein argues that these generalisations lack comparative or contextual analysis, and overlook existing non-nuclear household arrangements.
Many family forms exist in Africa, and not necessarily for orphans. However, academic literature and media reports draw uncritically on "traditional" demographic models, overlooking children's actual living arrangements.
Several studies point out that, more than the loss of one or both parents to disease, it is the stigma attached to AIDS that makes life hard for orphans - a veritable "social death".
Using a variety of participatory research tools, a 2002 study by Save the Children in South Africa found that orphaned children face discrimination within their families, communities, churches and schools before and after the death of their parents.
An unpublished report from Botswana by J. Daniels argued that stigma undermines the government's efforts to provide a safety net for orphans because families will not come forward to claim benefits.
Even the term "AIDS orphan" reinforces labelling and stigmatisation. A report by the US Agency for International Development to the US congress recommended not singling out the cause of parental death in applications for assistance, thus avoiding both stigma around AIDS and discrimination against other diseases.
Continued