Researcher Jo Steins’ review looks at the complexity of the stigma that AIDS orphans face

A review of published and unpublished research literature on the impact of HIV/AIDS on children in Africa has identified a considerable number of misunderstandings,
and many preconceived ideas that contribute to the stigma surrounding AIDS affected children. Along with the hardships of being orphaned by the disease, AIDS orphans are now confronting the misperception that an epidemic of orphans breeds criminals, militia and sex workers. Titled Sorrow makes children of us all: a literature review on the psycho-social impact of HIV/AIDS on children,
Jo Stein’s review makes it clear that a rethink on AIDS orphans is needed.

If ‘AIDS orphanhood’ is perceived as a disease, it is easy to see how this reinforces and facilitates the stigma and discrimination experienced by these children, especially when it is repeated in research and the media. 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) sums this up by saying, “So, stigma in life is replicated in research.”

Rachel Bray a researcher with UCT recognises that such ‘apocalyptic predictions’ are unfounded. Having researched street children in South Africa, Bray concludes that it is not growing up without parents that makes children prone to criminal or violent behaviour, but rather living in communities that exclude, abuse and abandon them.
The way society deals with parentless children is the real danger, not orphanhood itself, emphasises Bray. Government and society should take responsibility and
shift from seeing orphaned children as a problem to proactive aid for them. “Social parenting is as important
as biological parenting," added Stein. The review says that, “child-headed households or other living arrangements without adult authority threaten conventional wisdom on appropriate care and control of children”.

Studies conducted on the psychological adjustment of AIDS-affected children show an increase in depression, anxiety, psychosomatic reactions and post-traumatic
stress disorder symptoms as opposed to the misconceived increase in violent behaviour. The urgency of the crisis is clear from the escalating figures from UN agencies and development organisations, but Stein points out that comparative or contextual analysis is needed, and that in many cases the estimates overlook non-nuclear households. The family takes many forms in Africa, but academic literature and media reports draw on ‘traditional' demographic models that fail to take into account the actual living arrangements of children. Various studies clarify 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 by J. Daniels argues 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 stigmatisation. A report by the US Agency for International Development to the US Congress recommended that the cause of parental death should not be singled out in applications for assistance to avoid both stigma around AIDS and discrimination against other diseases.

Research has shown that AIDS orphans are vulnerable in a number of ways: to exploitation as cheap labour, as victims of sexual abuse, and as victims of financial deprivation through property grabbing, or the siphoning off of childcare grants in countries that provide them. This provides a powerful motivation for increased funding for NGOs that work with, or do research about, children but falls short of advocating deep changes to the state welfare system,
said the review.

Most studies deal with the numbers and ages of orphans and their material needs. The review found that there is little research on quality of life, childcare arrangements
and psycho-social support. This was clearly communicated
by Apiwe, aged 13, at the National Children's Forum on HIV/AIDS in South Africa in 2001. "My sister is six years old. There are no grown-ups living with us. I need a bathroom tap and clothes and shoes. And water also, inside the house. But especially, somebody to tuck me and my sister in at night-time.” Blankets, food and clothes are important for physical needs but little counselling, emotional and psycho-social support is available to these children. In her study Daniels says that it was hard to find a workable way of dealing with emotional trauma or what she calls ‘hidden wounds’. This is reinforced by Stein’s statement that, "It is easier to give clothes than to confront the huge emotional needs.” Her review concludes with a clinical overview of children's view of death and dying, and its implications for interventions. However, warns Stein, psycho-social support must be grounded in a broader net of social services for vulnerable children.