Cleaning diarrhoea repeatedly off a bedridden relative without access to running water; pretending to cook the evening meal for so long that the hungry children fall asleep from exhaustion; selling a child's school shoes because you can no longer afford to send him to school ...
For many households these are the realities behind the words affected by AIDS as people are forced to deal not only with the human degradation and physical suffering of the sick and dying, but also with the economic destruction wrought on the families of victims.
A study commissioned by the United States-based Henry J Kaiser Family Foundation focuses on how households cope with HIV/AIDS and particularly the financial implications of a chronically ill, often incapacitated, adult. The study, to be released next month, looked at 771 AIDS-affected households in Gauteng, KwaZulu-Natal, Free State and
The research conducted by Abt Associates documents how already impoverished South African households struggle to survive in the face of AIDS. The survey graphically shows how AIDS often tips families from poverty into destitution and it lays bare the development crisis caused by the pandemic. It also highlights the urgent need for substantially improved public services and support programmes to reduce the human misery in many AIDS-affected households.
The impoverishing effects of HIV/AIDS have no parallel with any other epidemic in human history because the effects occur disproportionately among young adults. Breadwinners, parents of young children, people in the most productive stage of their lives are dying. The average age of death from AIDS was just 37 in the households participating in the survey.
AIDS' effects most resemble those of war, where a generation of young men is sent to die. But women are also being lost in this battle.
More than two-thirds of the AIDS-affected people interviewed in the survey were female and they were on average just 33 years old. Men averaged 37 years.
The households surveyed were mostly poor, with an average income of less than R1 000 a month. Almost two-thirds of the households had lost income because of HIV/AIDS, often because the sick person had been a wage earner.
In many cases income dropped because others in the household had to miss work to care for the sick.
Poor nutrition and hunger is one of the most serious consequences of the decline in income. More than half the rural families suffered food
shortages; urban families tended to be slightly better off, with 42% going hungry at times. Children were reported to go without food in roughly the same proportion as adults, with serious implications for their physical and mental development.
Poor nutrition accelerates the onset of secondary infections and hastens the onset of full-blown AIDS in HIV-infected people.
Apart from reducing spending on food, AIDS-affected households cut expenditure on basics such as electricity, clothing and other services.
The pressure of losing income is forcing ever more families to liquidate their investment in the future - the education of their children. Almost one in 10 children was out of school, either because of the cost (four percent of households had to cut spending on school fees) or because their labour was needed. In seven percent of households a child was the primary caregiver for sick adults. Almost a quarter of the children under 15 were orphans, having lost either their mother or both parents.
Not only were families coping with less money, they also diverted their limited resources to help the sick.
On average, households were spending a third of their income on healthcare, but in rural areas this rocketed to more than half. Average national household expenditure on health is approximately four percent. Lack of access or dissatisfaction with public health services had driven half the households to private medical care.
But for these people antiretroviral treatment is unobtainable or unknown - and death is inevitable. Half the families in the study had paid for a funeral in the previous 12 months. Death may relieve the burden of suffering and care, but the cost of the funeral adds to financial woes: 53% of households carried the full cost of the funeral, which usually consumed more than three months' income.
The social safety net is being strained to the limits by the rising tide of the AIDS epidemic. One of the people interviewed was Thandi a 49-year-old woman looking after a household of 16 people, including her nine grandchildren and three other youngsters. The home-based care gives us food parcels, but it is not enough for this big family When I cook, I boil the water with no mealie meal till the children fall asleep, she said.
On average households in this study contained six people. Most were headed by women, of whom one in five was a pensioner.
Ominously in 17% of cases the head of the household had AIDS, and in another 14% that person was chronically sick. The implication is that within a few years almost a third of the households will lose their primary support, destabilising family networks further.
The disintegration of families is already evident More than one in 10 households reported that they had sent their children to live elsewhere, frequently with another, usually aged, relative.
But while families try to cope, communities are not always compassionate to those affected by HIV/AIDS. Only 35% of households felt their communities had been strongly supportive, but 10% said they had faced hostility or rejection
No part of South African society is unaffected by the HIV epidemic, but the poor are inevitably more vulnerable, a situation compounded by their lack of access to basic public health services such as clean water and safe sewerage.
The research documents how any attempt to combat HIV/AIDS has to consider the impoverished state of so many South Africans who may regard the virus as just another burden in life.
One of the saddest statements in the study came from a woman who had been
excluded from her community for having HIV/AIDS. Her four-year-old son is also infected, her sister died of the disease, and her parents are both dead. Yet she said: I love this HIV. Yes, I like this HIV/AIDS because
we have grants to support us.
This is the first in a series of three articles examining the findings of the survey and their implications
(Source: The mail & Guardian, 27 September 2002)