Coping with HIV and AIDS
Individuals, families and communities are impoverished by their
experience of HIV and AIDS in ways that are typical for long drawn-out and
terminal illnesses. It is a feature of HIV infection that it clusters in
families with often both parents HIV positive (who in time experience morbidity
and mortality). There is thus enormous strain on the capacity of families to
cope with psycho-social and economic consequences of illness, such that many
families experience great distress and often disintegrate as social and economic
units. This experience is well reflected by the testimony of Lucy (see Box) who
has seen her expectations as a mother and grandmother completely overturned by
HIV/AIDS. Integral to her experience is the disappearance of traditional support
processes for the elderly who can no longer anticipate being supported by their
children. Instead the old are taking on burdens of care for children under
conditions of increasing personal impoverishment and with associated living and
other problems for both generations.
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By the time my sons became ill with AIDS, one of my
daughters-in-law had already died of tuberculosis, and the other had become
mentally sick. So I was the closest person to my sons. I had to resume the role
of a mother caring for her sick children. I was the only one who could ensure
that their physical and emotional needs are met. It was very touching having to
nurse my sons again and watching them bed-ridden and deteriorating day by day.
My heart shrunk whenever I thought of caring for my grandchildren after the
death of their fathers. Their sickness had started encroaching on the savings I
had made for my own welfare in old age. It was very painful watching them die.
When I was a young girl of 17 getting married, I never dreamed that someday I
would see three of my sons die.
My sons left behind 6 orphans, and now I am once again a
mother to children ranging in age from 8 to 15. Two of my grandchildren were
also HIV infected. One has already died, and one is still living at age 8,
though she has started falling sick. I am taking care of them alone because in
our culture, it is the family of the father who must care for orphans. This is a
great challenge having to look after young children again after counting myself
among those who had graduated from the responsibility of being a mother.
Before my sons became ill, I had hoped that my role as a
grandmother would be to care for my grandchildren occasionally during school
holidays, but now I am alone in caring for them. In the old days, children were
not exposed to so many outside influences, but now Uganda society has changed so
much. I find that some of the tactics I used to instill discipline in my own
children no longer yield the desired response from my grandchildren. I find the
children less respectful and undisciplined in spite of my effort. I feel so sad
that I have gone back to the beginning and I have to struggle to get resources
to ensure that their basic needs are met, such as school fees, medical care,
clothing and other needs.
Lucy |
Poor families have a reduced capacity to deal with the effects
of morbidity and mortality than do richer ones for very obvious reasons. These
include the absence of savings and other assets which can cushion the impact of
illness and death. The poor are already on the margins of survival and thus are
also unable to deal with the consequent health and other costs. These include
the costs of drugs when available to treat opportunistic infections, transport
costs to health centres, reduced household productivity through illness and
diversion of labour to caring roles, losses of employment through illness and
job discrimination, funeral and related costs, and so on. In the longer term
such poor households never recover even their initial level of living as their
capacity is reduced through the losses of productive family members through
death and through migration, and through the sales of any productive assets they
once possessed. A true process of immiseration is now observable in many parts
of Africa.
An important aspect of the coping experience of those infected
and affected by HIV and directly related to poverty is the survival time from
initial HIV infection to death in Africa. HIV infected persons in Africa live
for a shorter time after initial infection than in developed countries, and this
is not simply related to access to new anti-retroviral treatments (although this
is now an important factor in the differential experience of rich and poor
countries). Even prior to the availability of ARV in rich countries the evidence
was that HIV infected persons in Africa had a survival time from infection to
death of approximately 5-7 years, about half that in developed countries. The
explanation is complex but is to a significant degree related to the poverty of
most of those infected with HIV in Africa.
Elements in the survival-time-differential of Africans which are
undoubtedly important include the inability to purchase relatively inexpensive
drugs to deal with HIV opportunistic infections (such as TB and diarrhea), poor
basic health and nutrition, limited psycho-social support and generally poor
quality care both in hospital and home settings. These factors are all remedial
through programme activities which can be provided at relatively low cost by the
state and NGOs, although they remain well beyond the capacity of poor households
to provide for themselves. Once provided they will extend and enhance the lives
of those infected and will permit them to support both themselves and their
families.
Central to these processes are often conditions of isolation and
discrimination such that traditional forms of social support for the poor and
the sick become inoperable. Societies characterised by random events such as
illness and death have developed mechanisms of social support - traditional
safety nets for those impoverished by disease and crop failure. What appears to
be happening is that traditional systems of support are themselves in decline
for structural reasons and are not being replaced by state mechanisms. At the
same time the clustering of poverty caused by HIV, which concentrates spatially
and in certain communities, places demands on disintegrating social support
systems to which they cannot respond. Furthermore because HIV and AIDS are
viewed in many communities as the outcome of reprehensible behaviour there is
often an unwillingness both to seek help by those affected and negative
responses often by those able to provide assistance. A dual process has emerged
which is the antithesis of what is required if the poor are to deal with the
social and economic costs of HIV and
AIDS.
