By IPS Correspondents
JOHANNESBURG, Dec 11 2005 (IPS)

Nombuso Mdluli, a home-based caregiver for people with AIDS, has a daily acquaintance with the suffering that HIV can inflict on its victims. For some reason, though, it is the plight of one particular man which haunts her.

“When I got to the room where he was lying in bed, I could sense he was not going to make it,” she told IPS, describing events on the afternoon she was urgently called to attend to the patient.

“There was something about his eyes which I can never forget. He asked me for a cup of water, but as I was about to give him the water, he died,” Mdluli added. “The family members who were present wanted to comfort me, whereas I was the one who was supposed to comfort them.”

The man was one of several patients assigned to her by a hospice in Soweto, a predominantly black settlement in South Africa’s financial centre of Johannesburg which is grappling with the effects of the country’s 21.5 percent HIV prevalence rate*.

On weekday mornings, she and the other 40 volunteer caregivers at Soweto Hospice set out to provide critically-needed support for persons who have fallen ill with AIDS-related diseases.

Like many other caregivers around the country, they receive a monthly stipend of about 40 dollars – an amount which some argue bears no relation to the importance of their role in a country where health services are struggling to provide for people’s needs.

“Home-based care is probably the only workable solution in the South African context, but it should not be regarded as a cheap solution. The state does not provide nurses who provide home-based care, so they should really empower the home-based care workers,” says Chloe Hardy, a paralegal at the Aids Law Project: an organisation based at the University of the Witwatersrand in Johannesburg, which assists HIV-positive persons in combating discrimination.

“The main problem is that there’s very little funding for care workers. Most of them are doing it because they are unemployed, and also because they feel a sense of responsibility to their communities, which are affected by HIV/AIDS,” she adds.

“We feel that if this is going to be government’s cornerstone of dealing with the AIDS issue, then there needs to be adequate funding and remuneration for home-based care workers.”

However, Solly Mabotha, a spokesman for the Department of Health, says the matter is receiving attention.

“The department has embarked upon the Community Caregiver Programme, which aims at creating career paths for these caregivers through the provision of comprehensive and generalist training,” he told IPS.

Once a caregiver has gone through the training stipulated by this programme, they will be entitled to almost 160 dollars a month until they find permanent employment.

“This training programme will enable them to provide more comprehensive care…The training, however, does not make them dispensers nor equip them to obtain licences to prescribe medication. This.is left to the professionals such as nurses, doctors and pharmacists,” says Mabotha, noting that there are currently about 1,500 home- and community-based care organisations countrywide.

For Mdluli, an increase in stipend would be welcome.

“But even if they don’t increase it, I will still continue. The eyes of that man, I will never forget them. You know, it was as if he was saying, ‘Thank you for being there’,” she adds.

“I’ve seen people getting terribly sick and weak, then getting much better again. They end up being like family. One develops a bond with them because you wash them, you are there to talk and to listen whenever they need you. So, I don’t see myself quitting what I’m doing now.”

In the four years that Mdluli has been volunteering at Soweto Hospice, she has seen a softening of attitudes towards people and families affected by the pandemic – although the extent of anti-AIDS stigma remains worrying.

“Sometimes you found that when a person disclosed his status to his family, they would hide the person in a back room and deny them food and – in some cases, where the sick person was staying with extended family – they would also victimise his children,” she says.

“But a lot has changed now. People understand the disease a lot better and we also teach the families how to take care of the patients.”

At present, Mdluli is in charge of 13 patients (she also teaches at a day care centre for children affected by HIV/AIDS for a week every month).

“My visits usually start with ‘category three’ patients, those who are bedridden. I do bed bathing, dressing of calluses and sores and provide counselling. Most of the people I visit are extremely poor, and in most cases cannot even manage taxi fair to a hospital,” says Mdluli.

“When a patient is in need of medical care or needs medicine to be prescribed, then I contact one of the nurses at the hospice who will do a house visit.”

The Soweto Hospice has five nurses who, on average, see 100 patients each week.

South Africa’s government began a programme to provide free anti-retroviral drugs (ARVs) in November 2003. However, officials have been accused of a lack of urgency in ensuring that those who need the medication to combat AIDS-related illnesses do in fact get it.

According to the ‘AIDS Epidemic Update 2005’, issued by the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the World Health Organisation, the vast majority (85 percent) of South Africans in need of ARVs were still not receiving them by mid-2005.

South Africa currently has world’s the highest number of HIV-positive citizens – over six million.

* This estimate is according to UNAIDS; it refers to adult HIV prevalence (ie: prevalence amongst people aged 15 to 49).

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