CNS STORY: Advocates: Caregivers on frontlines of AIDS pandemic need support

AIDS-CAREGIVERS Jul-27-2010 (1,270 words) With photos. xxxi

Advocates: Caregivers on frontlines of AIDS pandemic need support

By Paul Jeffrey
Catholic News Service

VIENNA (CNS) -- Although much of the news coverage of HIV and AIDS focuses on advances in research or controversies over prevention methods, those who struggle on the frontlines of the pandemic say more attention needs to be focused on those who quietly care for people living with the virus.

"Home-based caregivers are the unsung heroes of the AIDS response," said Ann Smith, the HIV corporate strategist of the Catholic Agency for Overseas Development, an agency of the Bishops' Conference of England and Wales.

"Caregivers provide basic health care, but also support and acceptance. Their visits to the homes of people living with HIV and AIDS destigmatize the disease and remove the fear and isolation that often accompany it. They are hugely important, but they're often ignored," Smith told Catholic News Service in an interview during the XVIII International AIDS Conference July 18-23.

It is often women -- usually older women, often grandmothers -- who provide the care and compassion. And activists say that work needs more visibility and greater resources if vital health services are going to be strengthened to better respond to the challenges of HIV and AIDS.

"Home-based caregivers have not received the recognition and visibility they deserve. If we're going to achieve universal access (to AIDS treatment and prevention), then appropriate attention and adequate resources are long overdue to those who provide care and support on the ground," said Hedia Belhadj, deputy director of the Technical Support Division of the U.N. Population Fund.

Matilda Maluza, national health secretary for the Catholic bishops' conference of Malawi, said that more than 80 percent of caregivers in her country are women, and they are not adequately compensated for their work.

"We are taking advantage of women, who are born to be caregivers. We're violating the rights of the woman, because she has other roles. I'm a woman, but I also go to work. When I come home, I want to sit down and rest. But if I've got a number of people to care for, as a woman I'm expected to go care for them. I have to cook and fetch water and firewood, and then I'm expected to care for others. When do I get time to rest? Just because you're a woman doesn't mean you should do everything," she said.

"Men should contribute more, but men tend to only get involved when there is pay involved. It's time for that to change," she said.

A study released at the Vienna conference by the international Huairou Commission showed that unpaid female caregivers in six African countries routinely donate an average of 69 hours per month to care for the sick and vulnerable -- a contribution worth millions of dollars each month. The study examined caregivers' work in Cameroon, Kenya, Malawi, Nigeria, South Africa and Uganda.

Maluza said increased government support for home-based care was sorely needed. Caregivers in Malawi -- where the Huairou study showed caregivers donate an average of 8.2 hours per week -- have organized an alliance to pressure the government for better support, she said.

Yet caregivers will continue their work whether official support is present or not, she said, because of the commitment and reach of faith-based organizations, which provide 40 percent of health services in Malawi.

"Faith-based groups began working with HIV and AIDS before governments got involved. We didn't sit around waiting for resources, we just got started," Maluza said.

U.S. Maryknoll Father Richard Bauer, executive director of Catholic AIDS Action, a program of the Namibian bishops' conference, said caregivers have long been "at the core of quality programming," yet the faith that often motivates such selfless commitment has not always been well understood.

"The first thing we do when we gather with our volunteers is pray, reinforcing their spiritual strength, because that's usually their primary motivation. Only then do we start talking about the medical aspects of their work. The success of a lot of faith-based organizations in combating AIDS is that we keep that order of things," Father Bauer told CNS.

"Donors and governments come to me constantly and ask how we do home care. I tell them that the volunteers are often motivated by their own faith. And the government representatives respond, 'Well, OK, but without that faith stuff, how do you do it?' What can I say? The faith motivation of the caregivers is key," he said.

In an era of declining financial support for AIDS work, Smith said the value added by caregivers makes faith-based organizations an even better channel for responding to the continuing crisis.

"One of the values of faith-based organizations is that they can mobilize huge numbers of volunteers, yet these people aren't visible at more strategic levels, in part because they don't cost the system anything. They should cost the system. It's a huge injustice, as caregivers are often expected to provide all sorts of support out of their own pockets, which are often as empty as those of the people they're caring for. But they're seldom factored into budgets or grants," Smith said.

Father Bauer said he has struggled to find ways to support the caregivers while affirming their volunteer status.

"Sometime they take food from their own family to care for other people. This can't continue from a justice point of view," he said. "So in one recent food distribution for orphans and other vulnerable children, I proposed taking 15 percent of the food and giving it to the volunteers, the ones who get it to those who need it. That was a solution that everyone supported."

Father Bauer has also worked to involve men, and he said the response surprised him.

"We started training men because we had the idea that a few of them could help convince other men to support the women doing the work, because women caregivers often got in trouble with their male partners. The male partners would say, 'Why are you doing all that? You should be out in the fields, or at home or caring for kids.' Our initial idea was to get the men to support the women, but the men said, 'No, we want to do it ourselves.' We started a couple of pilot programs of men providing home care for men. It was unbelievable. We now have more men on the waiting list to be caregivers than we have a budget to train and supervise them," Father Bauer said.

Dr. Kathleen M. Foley, medical director of the International Palliative Care Initiative of the Open Society Institute, said the situation of caregivers and the people they care for would benefit from more training.

"Home-based caregivers are not professionalized, so the formal health care system ... is worried about them because they don't have any way to standardize the quality of their care. Palliative care has clear standards, and people are certified in providing that kind of care. When we take home-based care and make it have clear quality standards, accountability and transparency, then there's enormous respect for home-based care. The caregivers have enormous common sense, and they have a clear understanding of what the family needs, but they need some help from a psychological and medical perspective," Foley told CNS.

She said caregivers can play a key role in monitoring the responsibility of governments to provide health care to their citizens.

"Pain relief and palliative care are human rights issues, and governments need to be held accountable. The best people to hold them accountable are our home-based caregivers, because they see the needs every day on the front line of responding to the health crisis," she said.

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