Children Affected by HIV/AIDS - What Happened in Bangkok?
By
Linda Richter (PhD)
Linda
Richter (PhD)
Children were not a serious part of
the international AIDS agenda in Bangkok. Some people
were even annoyed at the repetitive images of wide-eyed
pathetic children. Kate Harrison, Senior Program Officer
with the International HIV/AIDS Alliance wrote on
the CABA list serve about her anger at the way children
were represented at the conference. She contended
that "while we continue to have images of children
as cute, passive and needy, using them as decoration
for publicising our programmes, children will not
be taken seriously as dynamic actors in community
action against AIDS". I was also dismayed during
the official ceremonies to have children from institutions
brought out to sing and dance for the audience, in
what Kate called "a display of manipulation,
tokenism and decoration that could be used as examples
of how NOT to work with children".
There were very few presentations on the scale and
seriousness of the problems affecting children as
the people on whom they depend lose jobs, fall deeper
into poverty, become demoralised by the burden of
their worries, are preoccupied and worn out by the
stress of caring for others, fall ill and/or die.
It is as if these issues - more serious in their impact
on caregiving, and therefore on children's wellbeing,
than any world or regional war - are not fully comprehended.
"Orphans" is just too simple an extraction
from this threat to be useful. In a book entitled
Supporting Disadvantaged Children in a World of Poverty,
War and HIV/AIDS, which will appear early in 2005,
Karsten Hundeide and I argue that there are three
priorities in children's care that have to form the
core of, and give purpose to, interventions for children
affected by AIDS. Firstly, all children must have
at least one caregiver devoted to their wellbeing.
Without this, external agencies attempt to provide
material and psychosocial care, often in unsustainable
ways that, in any case, do not address the child's
primary needs to be in relationship with others. Secondly,
these caregivers must receive the support they need
to effectively care for the child. This is the key
role of government aid and service organizations;
and thirdly, the child and caregiver must be helped
to be part of the social institutions that make up
our communal endeavours. These are families, schools,
religious groups, civic associations, and the like.
If we don't keep our eyes on these goals, much of
what we do is not likely to be effective or sustainable.
At the conference I was on the look out for interventions
to support families and communities, programmes to
care for AIDS sick children in hospitals including
their caregivers and the professionals involved in
their treatment, and efforts to include men in children's
care and support. In common with many conference goers,
I was looking for people who think like me or who,
for good reason, don't think like me - and to whose
views I better pay attention!
There was very little on programmes to assist the
family and kin of children affected by AIDS. Even
the term, children affected by AIDS, isolates children
from their social environment and creates them as
a target for a myriad of individualised programmes,
such as play groups and memory projects, delivered
by people outside of the extended family. While well-intended,
there are pitifully few such interventions that have
demonstrated their effect on averting negative, or
on promoting positive, outcomes in children. In addition,
such one-by-one efforts have no chance of matching
the scale and duration of the AIDS epidemic's impact
on children.
In 2002 it was estimated that nearly 3 million children
were living with AIDS. Several reports in South Africa
are that well over half the children in paediatric
wards are infected with HIV. During my visits to hospitals
I have been extremely disturbed by the distress of
everyone involved - children are frequently unable
to feed or soothe themselves, caregivers are overwhelmed
by their own sorrow and the suffering of their children,
and staff lack direction on what to do in a situation
that is also agonizing for them. Only one paper at
the conference dealt directly with the palliative
care of children. The care of sick and dying children
is an area urgently needing attention, not only because
so many people are suffering, but because it is important
to retain and share our humanity through kindness
and respect to those facing the last months or hours
of their life.
I was more fortunate on the issue of the involvement
of men in the care and support of children. At least
in PMTCT programmes, there seems to be growing recognition
of the importance of, and success achieved in, involving
men from the start of VCT through couple's counselling.
There was also a smattering of presentations on the
involvement of men in the care of terminally ill,
orphaned and vulnerable children. However, an innovative
paper by Lorraine Sherr and her colleague filled a
gap in focusing also on men's reproductive choices
and fatherhood as a component of their HIV testing.
They found that men were rarely given reproductive
information or advice during testing and more than
half said they'd value fertility and fatherhood consultations.
Women carry an unbearable burden in the AIDS epidemic,
including for the care of children. However, researchers
and practitioners need to do more to assist women
and not just their children, and to promote men's
involvement in responsibility for, and care of, children
affected by the epidemic.
Linda Richter is the Executive Director: Child,
Youth and Family Development at the Human Sciences
Research Council and an Honorary Professor at the
School of Psychology, University of KwaZulu-Natal.
