The problems faced by AIDS orphans

1. Emotional impact

Children whose parents are living with HIV often experience many negative changes in their lives and can start to suffer neglect, including emotional neglect, long before they are orphaned. Eventually, they suffer the death of their parent(s) and the emotional trauma that results. They may then have to adjust to a new situation, with little or no support, and may suffer exploitation and abuse.

In one study carried out in rural Uganda, high levels of psychological distress were found in children who had been orphaned by AIDS. Anxiety, depression and anger were more found to be more common among AIDS orphans than other children. 12% of AIDS orphans affirmed that they wished they were dead, compared to 3% of other children interviewed.

These psychological problems can become more severe if a child is forced to separate from their siblings upon becoming orphaned. In some regions this occurs regularly: a survey in Zambia showed that 56% of orphaned children no longer lived with all of their siblings.

2. Household impact
 The loss of a parent to AIDS can have serious consequences for a child’s access to basic necessities such as shelter, food, clothing, health and education. Orphans are more likely than non-orphans to live in large, female-headed households where more people are dependent on fewer income earners.13 This lack of income puts extra pressure on AIDS orphans to contribute financially to the household, in some cases driving them to the streets to work, beg or seek food.

The majority of children who have lost a parent continue to live in the care of a surviving parent or family member, but often have to take on the responsibility of doing the housework, looking after siblings and caring for ill or dying parent(s). Children who have lost one parent to AIDS are often at risk of losing the other parent as well, since HIV may have been transmitted between the couple through sex.

3. Education

Children orphaned by AIDS may miss out on school enrolment, have their schooling interrupted or perform poorly in school as a result of their situation. Expenses such as school fees and school uniforms present major barriers, since many orphans’ caregivers cannot afford these costs.15 Extended families sometimes see school fees as a major factor in deciding not to take on additional children orphaned by AIDS.

AIDS orphans may also leave school to attend to ill family members, work or to look after young siblings. Even before the death of a parent, children may miss out on educational opportunities; research in Kenya suggests that children of HIV-positive parents are significantly less likely to attend school than other children.

Outside of school, AIDS orphans may also miss out on valuable life-skills and practical knowledge that would have been passed on to them by their parents. Without this knowledge and a basic school education, children may be more likely to face social, economic and health problems as they grow up.

4. Stigmatisation

Children grieving for dying or dead parents are often stigmatised by society through association with AIDS. The distress and social isolation experienced by these children, both before and after the death of their parent(s), is strongly exacerbated by the shame, fear, and rejection that often surrounds people affected by HIV and AIDS. Because of this stigma, children may be denied access to schooling and health care. Once a parent dies children may also be denied their inheritance and property. Often children who have lost their parents to AIDS are assumed to be HIV positive themselves, adding to the likelihood that they will face discrimination and damaging their future prospects. In this situation children may also be denied access to healthcare that they need. Sometimes this occurs because it is assumed that they are infected with HIV and their illnesses are untreatable.
“We should remember that the process of losing parents to HIV/AIDS for the children often includes the pain and the shame of the stigma and the fear that the disease carries in most our societies.” UNICEF representative Bjorn Ljunqvist19

5. Family structures

In African countries that have already suffered long, severe epidemics, AIDS is generating orphans so quickly that family structures can no longer cope. Traditional safety nets are unravelling as increasing numbers of adults die from HIV-related illnesses. Families and communities can barely fend for themselves, let alone take care of orphans. Typically, half of all people with HIV become infected before they are aged 25, developing AIDS and dying by the time they are 35, leaving behind a generation of children to be raised by their grandparents, other adult relatives or left on their own in child-headed households.

Traditional systems of taking care of children who lose their parents, for whatever reason, have been in place throughout Sub-Saharan Africa for generations. But HIV and AIDS are eroding such practices by creating larger numbers of orphans than have ever been known before. The demand for care and support is simply overwhelming in many areas. HIV reduces the caring capacity of families and communities by deepening poverty, through medical and funeral costs as well as the loss of labour.

The way forward

The way forward is threefold: firstly new HIV infections must be prevented so that children do not lose their parents; secondly access to antiretroviral treatment needs to be stepped up; and finally care must be provided for those children who are already orphaned. The rest of this page is devoted to issues around the care of AIDS orphans in Africa, but it is also important that HIV prevention is not forgotten. The situation of AIDS orphans is ultimately generated by adult deaths; until this problem is addressed the orphan crisis will continue.

1. Support for carers

In the early days of the AIDS orphan crisis, there was a rush by well meaning non-governmental organisations to build orphanages. Given the scale of the problem, though, this response was unsustainable, as the cost of maintaining a child in such an institution is much greater than other forms of care. Most people now believe that orphans should be cared for in family units through extended family networks, foster families and adoption, and that siblings should not be separated. Studies in sub-Saharan Africa have repeatedly demonstrated that growing up in a family environment is more beneficial to a child than institutional care, which should be considered a temporary option or a last resort.

Ultimately, though, the extended family can only serve as part of the solution to mass orphanhood if adequately supported by the state and the community, as well as other sectors of society.

The community needs to be supportive of children when they are orphaned, making sure that they are accepted and have access to essential services, such as health care and education. This means improving existing services and reducing the stigma surrounding children affected by AIDS so that they do not face discrimination when trying to access these services.

2. Keeping children in school

“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.”

Schools can play a crucial role in improving the prospects of AIDS orphans and securing their future. A good school education can give children a higher self-esteem, better job prospects and economic independence. As well as lifting children out of poverty, such an education can also give children a better understanding of HIV and AIDS, decreasing the risk that they will become infected. Schools can also offer benefits to AIDS orphans outside of education, such as emotional support and care.

Unfortunately orphans may be the first to be denied education when extended families cannot afford to educate all the children of the household.

3. Empowerment for children

If AIDS orphans are as active members of the community rather than just victims, their lives can be given purpose and dignity. Many children already function as heads of households and as caregivers. They are a vital part of the solution and should be supported in planning and carrying out efforts to lessen the impact of AIDS in their families and communities.

4. Protection for the legal & human rights of orphans

Much can be done to ensure the legal and human rights of AIDS orphans. Many communities are now writing wills to protect the inheritance rights of children and to prevent land and property grabbing, where adults attempt to rob orphans of their property once they have no parents to protect their rights.
“You find that the parents have been productive and have left assets for the children but immediately after their deaths, the relatives squander everything. Those that are left without anything are just being used for the food rations.” Pelonomi Letshwiti, a social worker for Childline Botswana

Children orphaned due to AIDS may face exploitation in other areas of their lives as well. For instance, evidence suggests that there is a relationship between AIDS orphans in sub-Saharan Africa and increased child-labour.23

5. Meeting emotional needs

The physical needs of orphans, such as nutrition and health care, can often appear to be the most urgent. But the emotional needs of children who have lost a parent should not be forgotten. Having a parent become sick and die is clearly a major trauma for any child, and may affect them for the rest of their life.
“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.” Apiwe aged 1324