Special Report - New thinking needed on "AIDS orphans"

A review of research literature - 81 published and unpublished papers, books and reports - on the impact of HIV/AIDS on children in Africa has found significant gaps and biases that shape responses to AIDS-affected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. Research has pointed out that AIDS orphans are vulnerable to exploitation as cheap labour, through sexual abuse, and 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. Few authors draw attention to the failure of the state to care for South African orphans, the report said. Elsewhere in Africa, relief agencies and the media highlight the plight of orphans and the funding needs of NGOs, but the failure of governments to adequately address the issue is seldom discussed in the media or academic literature. Most studies deal with the numbers and ages of orphans and their material needs. There is little research proper, only anecdotal evidence, on quality of life, child care arrangements and psychosocial support, the review found. Financial and material needs are usually presented as the most pressing, neglecting the emotional needs, as poignantly expressed 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," she said. The result is a focus on material needs - distributing blankets, food and clothes - and little counselling, emotional and psychosocial support. In her Botswana study, Daniels said it was hard to find workable means of dealing with emotional trauma or what she called "hidden wounds". "It is easier to give clothes than to confront the huge emotional needs," said Stein. Notably, most literature looks at orphans after the death of parents. Yet the trauma starts way before, during illness: selling assets for medicine; role reversal when children nurse parents, and assume domestic and child care responsibilities beyond their years. In a study in South Africa in 2000, R. Smart found that the "parentification process" is associated with growing isolation. Many children constantly worry about going to school and leaving their parents to die alone. Bereavement and grief among African children deserve more research, as do issues of disclosure of HIV status. Studies find that, generally, children who know about their parents' HIV-positive status are less stressed than those who have not been told, but perceive anyway that the parents are not well. The only African study concerning disclosure to children, conducted by T. Marcus in South Africa's KwaZulu Natal province in 1999, found that young children are excluded from discussion about the imminent or recent death of a parent because death is a topic for adults. If silence and exclusion are accepted cultural norms, this affects disclosure and communication among the family. Other academic literature suggests that culture is frequently invoked as the reason for silence regarding death. Such taboos can be so strong that someone who openly talks about his or her impending death could be accused of witchcraft, one study found. Professional psychological knowledge about bereaved children has largely been developed in a Western context, so there is a gap in information on HIV-specific grief among African children. Among other researchers, S.A. Mallman and J. Altschuler have examined how children cope with death, burial and adversity. However, most research looks at children after parental death, although interventions before bereavement are also important. One exception is memory work, conducted in Uganda, Kenya and South Africa, geared specifically to the needs of parents and children. [AFRICA: Memory boxes to help say goodbye] The study concludes with a clinical overview of children's conception of death and dying, and its implications for interventions. However, warns Stein, psychosocial support must be grounded within a broader net of social services for vulnerable children. Links Sorrow Makes Children of Us All: A Literature Review on the Psycho-social Impact of HIV/AIDS on Children - Jo Stein AIDS and Society Research Unit, Centre for Social Science Research, University of Cape Town Children on the Brink 2002: A Joint Report on Orphan Estimates and Program Strategies UNICEF - The State of the World's Children AIDS Orphans Fact Sheet