Children
who lose a parent to AIDS suffer the grief and confusion experienced by any
orphan. However, their loss is often worsened by prejudice and social exclusion,
by the loss of education, health care, even of the property they are entitled to
inherit should the second parent die as well. The resulting poverty and
isolation can create a vicious circle, placing them at greater risk of
contracting HIV themselves.
UNAIDS
estimates that by mid-1996, nine million children under 15 years old had lost
their mothers to AIDS. More than 90% of these were living in sub-Saharan
African countries.
Keeping
track of the number of such orphans is difficult.
The varying definitions of orphanhood make counting orphans difficult. Most, but
not all, organisations define orphans as those children who have lost one or
both parents to AIDS. Because HIV, the virus which causes AIDS, is sexually
transmitted, one parent who becomes infected is very likely to pass the virus on
to his or her partner. Children who lose one parent to AIDS are at great risk of
losing their second parent as well.
In
Uganda, there are 1.2 million children under the age of 18 who have lost at
least one parent to AIDS, a figure that is increasing by an estimated 50,000
each year according to the US Bureau of Census. Children orphaned by AIDS in
Zimbabwe are the largest and fastest growing category of children "in
difficult circumstances", according to UNICEF. AIDS experts in the country
estimate that by 1996, eight per cent of children under 15 had lost their
mothers to AIDS.
Although
sub-Saharan Africa is the worst affected, the numbers of orphans of AIDS is
rising fast in other regions. In Thailand, more than 100,000 children under the
age of 15 will have lost their mothers to AIDS by the end of the decade.
In
many developing countries extended family systems have traditionally provided
support for orphans. AIDS, combined with other pressures such as migration,
is pushing the extended family system to breaking point in the worst affected
communities.
For
example, many AIDS orphans are looked after by their grandparents. But the
grandparents themselves may be in need of health care. The death of a
grandparent 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. Evidence of the exact number of such households is scant,
although one study found that in Rakai District, Uganda, 4% of households were
headed by children between 12 and 16 years old. Increasingly, in communities
with major AIDS epidemics, families are cared for either by the very young or
the very old.
The
generosity of many people in countries most affected by AIDS is shown by the
high incidence of fostering of orphans by unrelated families, often neighbours.
A study in Kagera, Tanzania indicated that families that had experienced an AIDS
death were more likely to have taken in children orphaned by AIDS from other
households.
While
generosity and extended family support is often the norm, discrimination and
exploitation of orphans is also common. Discrimination may be manifested in
small ways. When an HIV diagnosis becomes known, friends may come to visit less
often, children may be taunted or harassed by schoolmates, family businesses
sometimes lose customers.
In
Zimbabwe, focus group discussions with members of AIDS affected communities
indicated that social isolation of children orphaned by AIDS was common.
In northern Thailand, a 1994 study of 116 households affected by HIV found that
stigmatization, largely due 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 theirs. It also
found that many parents had lost jobs as a result of AIDS and family enterprises
had lost customers.
Orphans
may also be denied property rights. In Uganda for example, most orphans stay in
their parents' home, but they are at risk of exploitation by elders or landlords
who may attempt to claim the property from them.
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 16 year old Beatrice
from Kenya. A study in Zambia indicated that in urban areas, 32% of orphans were
not enrolled in school, compared to 25% of non-orphans. In rural areas, 68% of
orphans were not enrolled in school, compared to 48% of non-orphans.
There
are thousands of small scale community based schemes around the world that aim
to provide care and support to children orphaned by AIDS. But such projects
are not being carried out on the scale that is required. Most orphan
programmes 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, a much larger response is needed. A survey of orphan households
conducted in the Ndola region of Zambia found that 86% received no help from
community non-governmental-organisations (NGOs) or the government.
The
bottom line is that care and support requires more money, but in the world's
poorest countries, children orphaned by AIDS are just one of many competing
urgent priorities. Governments of many of the worst affected countries are
under intense pressure to cut back on social and health services under
structural adjustment programmes. Resources available to NGOs and international
agencies are woefully insufficient and, in some cases, support efforts are
poorly coordinated.
Problems
for children affected by AIDS really begin when a parent becomes ill. "If
we wait until the children become orphans, it is really too late", he
says. The number of orphans who have lost a parent to AIDS are often greatly
outnumbered by children whose parents are ill but have not yet died. A Brazilian
study estimated there were 183,000 children whose mothers were HIV-positive.
Only 6% of these children had already become orphans, but the great majority had
mothers who were alive but suffering from HIV-related illnesses and lacked the
strength and support to take full care of their children.
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 and community based NGOs
should attempt to identify children at risk of becoming orphans. 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's future.
The
Declaration also recognises 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 protect these rights
further. The promotion and safeguarding of children's rights is a major
objective of the Children Living in a World with AIDS campaign being
conducted by UNAIDS and its partners.
Orphanages
should be a last resort in providing care to those orphaned by AIDS, according
to experts. Orphanages are 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, especially in Africa.
If that link is broken, it can perpetuate or even accelerate the breakdown of
community support systems for children.
This
information sheet has been prepared by the Panos Institute in support of the
UNAIDS Children Living in a World with AIDS campaign.