The vital but underestimated role of AIDS caregivers

Swaziland's home-based caregivers are too few and too poorly paid to cope with the growing numbers of bedridden AIDS patients, but in the absence of adequate health facilities and trained professionals, they are seen as the immediate answer to a national emergency. Over 40 percent of sexually active Swazis are HIV positive, but only a few thousand are on antiretroviral (ARV) medication that can help prolong their lives. As a result, "we are going to see an increase in AIDS related illnesses [and] we find few patients' families able to take care of them - it's so demanding, and stressful work", said Zelda Nhlabatsi, a community activist from the town of Malkerns, 20km east of the capital, Mbabane. Caregivers provide individual attention to bedridden patients at their homes: feeding, washing and dressing them, reading to them, passing on health advice and offering companionship to help lessen their isolation. Some are volunteers, while others receive a government stipend. Each of the country's 5,500 non-volunteer caregivers receives R100 (about US$17) per month, but the small allowance does not meet the basic needs of those who get it, and creates resentment among those who are unpaid. "Most of the caregivers are in rural areas. We go from homestead to homestead - people live far apart! If I am lucky, I have a dirt road to walk - in the dry windy winter you are caked with dust, and in the summer it's mud, mud!" said Faith Sukati, a caregiver working in rural Mhlambanyatsi in south-central Swaziland. Sukati, speaking at a national meeting of caregivers on Tuesday, said she has to choose between using her allowance to take a bus to the homes she needs to visit, or purchase food for lunch. "The work is so hard I have no energy if I don't eat," she said. "We need to harmonise the caregivers' allowances, and definitely increase the number of caregivers. Swaziland needs more people doing this," said Thembesile Dlamini, a programme officer with UNAIDS in Swaziland. The health ministry spends US$1 million a year on caregiver allowances, which Dlamini said was a tiny sum, given the importance of their role and the total of money spent on the country's AIDS campaign. "UNAIDS trains trainers - the ones who then go out to recruit and teach caregivers at the community level - but we need to accelerate the pace. The health ministry says there is one caregiver for 20 rural homesteads, and that is stretching the capacity of that one person too far," said Dlamini. Gender is another issue. At the caregiver's meeting on Tuesday, middle-aged women dominated the group. Of the 1,300 caregivers presently at work in Swaziland's Hhohho Region, which incorporates Mbabane and the northern town of Pigg's Peak, only 33 are males; of the 980 caregivers in the rural eastern Lubombo Region, which has been hard hit by AIDS, only 19 are male. "You find this in many African countries: the women are the ones at home who tend to the ill. This has expanded into modern healthcare, and women are the ones you find volunteering as caregivers," said Ncane Simelane, a caregiver in the central Manzini region. UNAIDS's Dlamini felt traditional attitudes toward gender and job types would have to change if Swaziland is to recruit the number of health caregivers needed. "But already we are seeing male nurses at the town hospitals. The health emergency will prompt change, too, and caregivers will be seen as the emergency response workers that they are, and not just casual, part-time volunteers," she said. "They work too hard, they are urgently needed, and they deserve respect."