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The plight of orphans and other AIDS-affected children

Published: 16 September 2009

With 12-15 million children globally having lost a mother, father or both parent to HIV/AIDS, and millions more in danger of losing their parents due to HIV infection, it is all to easy to find sad and disturbing stories regarding orphans and vulnerable children.

The problems often start while their parents are ill:

“The weather is so cold, but my family does not have money to buy coal… I am so scared that my mother will catch a cold, as the doctor said that she would not be able to survive if she catches one. Because I am not a real AIDS orphan [by government’s definition], the county government does not assist us financially. But our life is even harder than that of [some of the double] orphans”  (Quote from a 13-year-old whose father has died of AIDS and whose mother has advanced AIDS.1)

The strain of living with a parent whose health is failing — possibly over quite a long period of time, can leave a lasting imprint on a person’s psyche. For most children whose parents have HIV, this ultimately leads to bereavement — which may be made all the more challenging by the cause of death, or rather the community’s prejudice about it.

“After my parents died, the kids in the village did not play with me any more. Nobody in school wants to speak with me. I have not spoken to anyone for a long time because no one will listen to me… I wanted to speak with my good friend before, but she is not willing to talk to me at all and always covers her mouth with her hands. Today, I finally found someone I can talk to: [a] big yellow dog…”  (Quote from a 9-year-old girl orphaned by AIDS.2)

This child lives in China, but stigma isolates children closely affected HIV almost everywhere.3 For instance, a world away in Zambia, extensive fieldwork by Dr Virginia Bond of the London School of Hygiene & Tropical Medicine, found precisely the same thing — that children orphaned by HIV in Zambia expressed feelings of rejection, exclusion, loneliness, pain, feeling “different” because they aren’t treated the same as other children or because they don’t go to school.4  (Although it varies by setting — particularly depending on whether there are fees for schooling— the children of poor people with HIV often must quit school (at least temporarily) to find work or become caretakers to their siblings and ill parents, especially the daughters.5, 6, 7, 8, 9, 10)

“Orphans are looked on “as the remains of the dead person who only bring problems and whose needs are always a second priority.” said one youth officer interviewed in Bond’s study. Note, this may be true of orphans in general (see below) — but it is important to stress that HIV/AIDS is responsible for more than one-third of the orphans in Africa, and more than half of the orphans in eastern and southern African epidemics.

“When you don’t have parents, no one to buy you clothes, maybe you live with another family and you get none,” said one child quoted during a presentation by Dr Lucie Cluver of the University of Oxford at last year’s International AIDS Conference in Mexico.

Clearly this depends on who is caring for the child. Where the child is placed depends upon the setting, culture and other circumstances and there have been a lot of popular misconceptions about orphans and vulnerable children (OVC). For instance, at one time, there were concerns that many OVC would have to fend for themselves. But while there are some cases where a child in a family (often the eldest girl) becomes the head of the house, this does not seem to be as widespread a problem as once feared. In fact, according to a study presented at this year’s South African AIDS Conference, current models suggest that while there are 4 million children in South Africa who have lost one or both parents, less than 0.7 percent of these children are living in child-headed households (comprising less than 0.5 percent of South Africa’s households) and these figures seem to be relatively unchanged over the last several years.11  Rather, the vast majority of OVC live in intergenerational households, with their grandmother, or other extended family members.

Sometimes, the gulf in age and even culture between the child and their caretakers (such as when children must go from an urban setting back to the ancestral village) can lead to poor communication, and cultural misunderstandings. For instance, in Botswana, it is common not to tell a young child that their parents have died, and so orphans wind up confused, or feeling hurt and rejected.12  Another case comes from Karilyn Collin’s work in Tanzania:

During a lesson on personal hygiene and regular bathing, a girl of 11 from Muheza whose mother had recently died of AIDS, burst into tears. She was upset because she said her grandmother was ‘very cruel’ and would not let herself or her brother wash. When questioned, the grandmother said this was the tradition in their tribe, that one had to wait at least 2 weeks before changing clothes and washing in case a little of the deceased spirit was still on you — but no one had explained this custom to the child, so she had felt she was being punished.

Fortunately, this misunderstanding was resolved because the palliative care team noticed it and intervened. But some homes have more difficult problems to address. Most importantly, many caretakers’ ability to cope with another mouth to feed is limited by poverty. The familiar narrative of orphans being treated as an unwanted burden is thus common across many cultures. For instance, a study in Mozambique reported that non-biological children placed in a non-poor household are treated more or less the same as the biological children, but in the poor households, there appeared to be “discrimination in the intra-household allocation of resources against children that are not direct biological descendants of the household head.”13  In impoverished rural settings in Zambia, the children in Bond’s study described orphans who were forced to work while other family members were eating. One child spoke of an orphan being “sent to the market to buy things and on the way home the money gets lost. After reporting back to her aunt — the aunt just poured hot water on the orphan, but she wouldn’t pour hot water on her own children.”

Orphans (regardless of cause) appear to be more often forced into child labour — one study in Ethiopia reported that more than three-quarters of the domestic workers were orphans.14  In Tanzania, 38% of the children working full time to quarry tanzanite are orphans,15  while in Zambia, 47% of the children involved in sex work were double orphans (in other words, they had lost both parents), while 23%, were single orphans.16

In South Africa, evidence suggests that AIDS-orphans are significantly more likely to start having sex at an earlier age. 17 A study at the South African AIDS Conference this year suggested that early sexual debut may be more common when the parent lost is the same gender as the child.18  Unfortunately, the sexual debut may be due to sexual abuse or survival sex. According to one study in Zambia, orphans and vulnerable children surveyed said that their greatest problem was ‘defilement’ (sexual abuse).19

AIDS-affected children are also increasingly subjected to ‘spiritual’ abuse — or abuse in the name of God, with revivalist church pastors and others accusing AIDS-orphans of witchcraft. A Save the Children report quotes one church ‘prophetess’ who gave the following explanation of orphanhood in one family in the DRC:20

‘Three children had been bewitched by their maternal grandfather. Their father had fallen ill and died of tuberculosis. The mother had died of AIDS caused by the children through witchcraft. Two of the children sought refuge with their maternal grandmother and one of the boys decided to look after himself. Basically, the family lived well but the mother had refused to give money to her parents, and so the grandfather decided to take revenge. The father’s sister was angry with the children because she thought they should have warned her so that she could get them exorcised and thus break the circle of death.

The prophetess ended her story in this way: ‘They are orphans through their own doing’.

According to a recent United Nations High Commissioner for Refugees (UNCHR) report, child witchcraft reports are occurring in various countries in Africa, as well as Papua New Guinea. “Since the early 1990s, particularly in large towns, accusations have shifted to children, the number of such allegations skyrocketed, and the subsequent treatment has become increasingly violent.”21  An article in the evangelical magazine Christianity Today describes the effort of one African minister to address the crisis — and how he found starving and sometimes tortured children incarcerated in desolate church compounds. Many of the children believed the charges levied against them.22

Given such difficulties, it isn’t surprising that some children choose a life on the streets — where life is pretty much guaranteed to be traumatic, according to a study of street children in Durban, presented at this year’s South African AIDS Conference.23

“My mother passed away. I had 4 brothers, one passed away and 3 are left. We are 4 girls, my sister died of AIDS and she left her child,” said one young girl participating in a focus group. In the morning we always think about food, we don’t have the money to buy soap so we don’t wash. The police will chase us and say we are not supposed to be there, we are supposed to be in school.”

At night, they depend upon the boys for protection, but are raped frequently and not just by one person — gang rape is common. Four of the twelve girls had given birth to babies, and they discussed among themselves where they could get back-alley abortions for 75 Rand ($10).

We list these cases not to evoke pity but to emphasise that some OVC must deal with very real challenges that are almost certain to leave emotional and psychological scars. Unfortunately, research into mental health issues in children in resource-limited settings has been neglected (just as it has in adults). The available research does indicate that psychological distress (with depression, post-traumatic stress, anxiety disorders, alcohol and drug abuse) is common in HIV-affected children — but the quality of the data is uneven, and quantitative data rare. Nevertheless, there can be little doubt that there are children in need of mental health services.

HATIP #149, November 26th, 2009

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.
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