Children Orphaned from AIDS

No one knows exactly how many children have been orphaned by AIDS worldwide but UNAIDS estimates that by mid-1996, 9 million children under 15 years of age had lost their mothers to AIDS, more than 90% of whom were living in sub-Saharan African countries.

While the global figure of 9 million is appalling, it reflects only a tiny part of a far larger social tragedy. Children whose mother, or both mother and father, have HIV begin to experience loss and suffering long before their parents' death.

In Brazil, for example, the Global Orphan Project (Boston & Brasilia) has estimated that there are some 183,000 children with living or deceased HIV-infected mothers. Of these, only 6% have already been orphaned. The overwhelming majority - 94% - still have their mothers. But many of these women are already suffering from HIV-related illnesses and lack the physical strength or family and financial support to take care of their children. All these children face deprivation and orphanhood in the years ahead.

Extrapolating these findings from Brazil to other countries is difficult because fertility rates and HIV infection rates among women differ from one country to the next. However, the results make it clear that, in any given country, the number of children with an HIV-positive parent is far greater than the number of children who have already lost a parent to AIDS. Children orphaned by AIDS are just the more visible part, the tip of the iceberg, of the larger looming problem of children with parents living with HIV/AIDS.

Most children orphaned by AIDS are concentrated in those countries most severely affected by the epidemic. Data provided by the US Bureau of the Census and the World Bank indicate that there are 1.2 million Ugandan children under the age of 18 who have lost at least one parent to AIDS and that this figure is increasing by an estimated 50,000 each year.

According to UNICEF, children orphaned by AIDS in Zimbabwe are the largest and fastest growing category of children "in difficult circumstances." AIDS experts in the country estimate that by 1996, approximately 8% of children under 15 had lost their mothers to AIDS.

A uniquely painful experience

Children who lose a parent to AIDS suffer grief and confusion, like any other children who experience the death of a parent. But there are special differences.

For one thing, the psychological impact can be even more intense than for children whose parents die from more sudden causes, such as in armed conflict or as a result of an accident. HIV ultimately makes people ill but it runs an unpredictable course. There are typically months or years of stress, suffering or depression before a parent dies. And in developing countries, where the epidemic is concentrated, effective pain or symptom relief is often unavailable to alleviate a parent's suffering.

The children's distress is often compounded by the prejudice and social exclusion directed at individuals with HIV and their families. This stigma may translate into denial of access to schooling, health care and of the inheritance rights of orphaned children. In this respect, girls may be at a further disadvantage.

A final cruel difference from other parental diseases is that HIV is likely to have spread sexually between the father and mother. Thus the child's chances of losing a second parent relatively quickly are far higher than, say, those of a child who has lost a parent to a disease that is not communicable to the partner.

These uniquely painful features of parental HIV/AIDS are of course of deep concern to the adults themselves. For HIV-positive mothers and father, making provision for their families is a main priority when they learn that they are infected. "My biggest fear was what was going to happen to the children", says Major Ruranga Rubamira, a major in the Ugandan army and the founder of the Ugandan National Association of People Living with HIV/AIDS. "I didn't know how long I was going to live and I still felt that within the time left I must try to do something. I tried to start some kind of business for my wife and I tried also to put up a house."

Extended families soak up the pressure - but for how long?

The extended family is the traditional social security system in many countries. In many developing countries, deep-rooted kinship systems have accordingly provided support to children and families affected by AIDS. It is common, for example, for children orphaned by AIDS to be taken in by aunts and uncles or even grandparents, who may have little income and may have been counting themselves on being supported by the very son or daughter who died of AIDS.

The remarkable generosity of many people in countries most affected by AIDS is also shown by the high incidence of fostering of orphans by unrelated families, often by neighbors. A study in Kagera, Tanzania, indicated that families who had themselves experienced an AIDS death were more likely to take in AIDS orphans from other households. Those households with the most dependents were also the most willing to take on additional orphans.

Financial pressures on those least able to afford them have inevitably increased. "I have 11 orphans living with me", says Leone Navalaka from Uganda. "My elder sister died and left me with her six children. And the other five belong to my daughter who also passed away. Taking care of these children is a real burden, " she says.

Even before the AIDS epidemic, many of these communities were already being pushed to breaking point as a result of labor migration, demographic change and other factors. With the advent of AIDS, the constraints have become even greater. One of the symptoms of this is the increasing numbers of households now headed by children - some of which may previously have been headed by grandparents at the death of the parents. "The death of a grand-parent may leave the situation where there is nobody else in the extended family willing to care for the children, giving rise to orphan households headed by older siblings", says Geoff Foster of the Family AIDS Caring Trust in Zimbabwe.

It is not only in developing countries that the extended family system is under strain. "Many European countries, particularly in Central and Eastern Europe, are experiencing problems as family systems come under pressure because of changing social structures and demography", argues Naomi Honigsbaum of the European Forum on HIV/AIDS, Children and Families. The same is increasingly true, for example, in metropolitan areas of the United States, such as New Haven and New York.

A vicious circle of poverty and discrimination

The relation between HIV/AIDS, impoverishment and denial of human rights is apparent in the impact of the epidemic on children who have been orphaned by AIDS.

When an HIV diagnosis in the family becomes known, friends may come to visit less often, and children may be taunted or harassed by schoolmates. In Zimbabwe, focus group discussions with members of AIDS-affected communities indicated that the social isolation of children orphaned by AIDS was common. And in the north of Thailand, a 1994 study of 116 households affected by HIV found that stigmatization, due largely to incorrect beliefs about HIV transmission, was widespread in everyday life. It was acknowledged by 20% of HIV-affected families that other children in the area were forbidden to play with their own.

Family poverty can follow in the footsteps of stigmatization. The Thai study found that many parents had lost jobs as a result of AIDS and family enterprises had lost customers.

Many extended families that have accepted orphans cannot afford to send all their children to school, and orphans are often the first to be denied education. "My foster mother wants to stop me from going to school. She wants me to work as a maid so I can earn money to buy food", says Beatrice, a 16-year-old from Kenya. A study in Zambia indicated that in urban areas, 32% of orphans were not enrolled in school, compared with 25% of non-orphans. In rural areas, 68% of orphans were not enrolled compared with 48% of non-orphans.

For many families, sending their children to school simply becomes an impossible option. "When my father died I was 14 years old", says Maurice Kibuuka, a 14-year-old Ugandan. "There were eight of us and my mother was left in care of us. I became the head of the family and I was responsible for looking for money, food, clothing, and even shelter.... I had no choice but to drop out of school."

Discrimination in accessing health care is a major form of social exclusion faced by orphans. About two-thirds of children born to HIV-positive mothers do not contract the infection and grow up to be as healthy as any other child in the community. However, this fact is often unknown or ignored. Evidence suggests that AIDS orphans may be at greater risk of dying of preventable diseases and infections because of the mistaken belief that when they become ill it must be due to AIDS and therefore there is no point in seeking medical help.

Children orphaned by AIDS are also at risk of losing their property rights, and rights to inheritance. Moreover, as shown before, the realization of children's rights is inextricably linked with their mothers' human rights - hence laws which disenfranchise widows have a devastating effect on the lives of their children.

The resulting poverty and isolation can create a vicious circle, placing AIDS orphans, and particularly orphaned girls, at greater risk of contracting HIV themselves.

"This lady likes mistreating me because my mother is dead", says one Ugandan girl interviewed by Panos. "She wants me to sleep with men because I stay at her house. She brings these men into her house and introduces me to them. She often tells me to be good to them and says this the only way I can continue to live in her house", she says.

What is being done to help?

The problems faced by AIDS-affected families have become a major priority for many national aid programs, as well as for international organizations such as UNICEF, and the Save the Children Fund. There are thousands of small community-based schemes around the world that aim to provide care and support to children orphaned by AIDS. In Uganda, for example, an organization called Uweso provides emergency material support and vocational training for these orphans. In Côte d'Ivoire, the International Catholic Child Bureau is helping to place orphans in foster homes and provides training and assistance. In Kenya and Tanzania, the African Development Foundation has funded farm projects, secondary education and housing for AIDS-affected families.

But such projects are not being carried out on the scale that is required. Most orphan programs can only help fewer than a hundred children at one time. In countries like Thailand, Uganda and Zambia where tens or hundreds of thousands of children are affected, the response desperately needs to be geared up to provide even basic support to those who most need it.

Finance is an important consideration. Many orphan programs rely on funding from non-governmental organizations based in economically affluent countries and UN agencies, and are seldom self-sustaining. Investment in these orphaned children is necessary for a stable future, both for the children themselves and for their communities. But in the world's poorest countries, children orphaned by AIDS may be seen as only one of many competing urgent priorities.

Despite a widespread belief that orphans are well-served by AIDS care organizations, there is a growing realization that such care is inadequate and that children orphaned by AIDS are in reality often a neglected group.

Reaching children before their parents die

Problems for children affected by AIDS are most acute from the time that HIV is diagnosed in a parent. If organizations wait until children become orphans, it is almost too late. Before the massacres in Rwanda in 1994, Caritas Rwanda, a Christian NGO, tried to help parents plan for the future of their children. They worked with parents to identify solutions and arrange for children to move in with relatives or foster parents. Caritas also advised parents on legal and property matters.

In 1994, representatives from NGOs throughout southern and east Africa drew up the "Lusaka Declaration on Support to Children and Families affected by AIDS". It urged that wherever possible, efforts should be made to keep children in AIDS-affected families in their communities. These efforts, it argued, should begin before the death of the parent. Home-based care schemes, in which visiting health or community support teams attend AIDS patients at home, should also be involved in helping parents plan ahead for their children.

The declaration also recognized that families affected by HIV are vulnerable to exploitation and recommended that NGOs inform people affected by HIV of their legal rights, and that governments revise existing laws to further protect these individuals.

Orphanages - a last resort

Orphanages should only be considered as a last resort in providing care to those orphaned by AIDS, according to experts. Dr Eric Chevallier of AIDES Médicale Internationale argues: "Orphanages are far more expensive than community-based approaches and they can be culturally inappropriate if they cut children off from their social origins. The link between generations is very important," he emphasizes.

Orphanages may be more successful in countries where they have been more commonly used in the past, such as in Thailand and India. But even in countries where orphanages are the norm, they can act as a magnet for stigmatization. In 1995 in Romania, a group of citizens led by a town mayor stormed an orphanage because it housed children who were known to be HIV positive. "The local population argued that these children can infect the other children in the town, as well as those in the orphanage," reported Romanian journalist Dan Stoica for Panos.

Institutional care has many limitations, as it usually cannot provide children with an ongoing, trusting relationship with a specific adult primary caregiver. Furthermore, institutionalization has proved to have adverse effects on people once they try to reintegrate into their communities, as they tend to lack support networks and the skills to develop them. Institutionalized care has also been found to nurture dependency and to work against self-reliance.