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ZAMBIA: Poverty adds another dimension to stigma

[This report does not necessarily reflect the views of the United Nations]

DURBAN, 18 April (PLUSNEWS) - The pressures of caring for terminally ill family members, while trying to make ends meet in a country staggering under the impact of the HIV/AIDS epidemic and food shortages, has forced many poor Zambian households to make painful decisions.

When faced with extreme levels of poverty, caregivers discriminated against the AIDS patient without even realising it, research presented at the international conference on HIV/AIDS and Food and Nutrition Security in Durban, South Africa, revealed.

"There's only so much people can cope with - these decisions are based on limited resources and their actions are driven by this - but people living with HIV/AIDS are experiencing it as stigma," Virginia Bond, principal investigator for a study on stigma in Zambia, commissioned by the International Centre for Research on Women (ICRW), told PlusNews.

According to Bond, stigma has become a "conflated term" that is being used "too loosely", without addressing the underlying factors causing the stigmatising behaviour.

The dimensions poverty brought to stigma had been largely ignored, she noted. "The concept [of stigma] should not be isolated from other social, political and economic processes and phenomena; stigma occurs within these," she told delegates at the three-day conference.

In Zambia the economic burden of caring for sick relatives was taking its toll. Patients were unable to contribute to household living expenses, and were instead "soaking up money, energy, time and space," the study found.

To make matters worse, the spiralling treatment and dietary needs of an illness that "takes too long" disrupted family plans, activities and budgets.

"When someone is sick and the family is poor, there are talks over what to eat - small things which need money. This brings problems in the family: where will the family get the money?" the study quoted a rural Zambian living with the virus as saying.

Consequently, households with little resources were selling their assets, borrowing money, stealing, and even selling sex to meet the basic needs of the patients - "really basic needs, like Panadol [pain reliever] and tomatoes," Bond said.

Over time, as people became less able to cope, the quality of care deteriorated, and taking care of the patient was often seen as "a waste of time" because the relative would eventually die.

By blaming the sick relative for their financial hardship, and for "getting HIV in the first place", people were able to justify their discrimination, and distance themselves from stigmatising actions and consequences.

The Zambian study quoted a nutritionist who described her experiences: "Some household members say it is a burden, and some of them are the people killing their own children very fast ... they ... call them bad names and all sorts of words that make the patients have depression," she said.

"They stop buying medicine, saying, 'we can't manage'. If the patient needs a type of food, they say, 'all the problems [we have], you have brought into this house'," the nutritionist recounted.

The quality of the family's past relationship with the sick relative and their usefulness to the family also determined the degree of stigma, Bond pointed out. Women and orphans were more likely to be blamed and rejected, while previous breadwinners were less likely to be stigmatised.

"The rich are able to buy care and support," she added, "but orphans are seen as the remains of the dead person and their needs are not seen as a priority."

Inevitably, rural dwellers were the hardest hit. Taking care of a terminally ill member took them away from the fields, and could even lead to missing planting seasons. Food shortages and travelling long distances to access health services made it harder to care adequately for people with AIDS.

In contrast, people in urban settings could turn to hospices, home-based care NGOs, churches and orphanages; there was also more cash in circulation in cities and towns, and people were more able to borrow money, the study found.

One way of reducing AIDS-related stigma in the context of poverty, was to alleviate household stress by providing better services, such as home-based care, welfare assistance and orphan support - particularly in rural communities, Bond suggested.

She called for anti-stigma education campaigns to "address the practicalities of stigma" by providing training in how to care for HIV-positive people, and manage AIDS in the household with understanding and compassion.

[ENDS]