Home- and Community-Based Care

Saturday, May 21, 2005

Doctor famous for helping in Haiti, Peru and Russia is now heading for Rwanda

In the deeply rural and desperately poor reaches of interior Haiti that Dr. Paul Farmer has made his home away from Harvard, people sickened with HIV are regularly brought back from the brink of death when they visit his clinic and begin taking antiviral drugs.

"It's a 'Lazarus effect.' That's what the people call it,'' said Farmer, the renowned physician and medical anthropologist whose tireless work in Haiti, Peru, the jails of Russia and the slums of Boston has set a standard for the care of AIDS and tuberculosis among the poor and dispossessed.

Last month, in partnership with the private foundation of former President Bill Clinton, he launched a new program to bring rural health care and AIDS treatment to remote eastern Rwanda -- a nation rising from a ghastly genocide a decade ago.

"We've been wanting to go there for a very long time,'' said Farmer, relaxing Friday at the Berkeley home of a friend before delivering this morning's commencement address at the UC Berkeley School of Public Health.

The 45-year-old Farmer, described as "a man who would cure the world" in a profile of his work by Pulitzer Prize-winning author Tracy Kidder, was also in the Bay Area to receive an award Wednesday from Global Exchange, the San Francisco human rights advocacy group.

"He's an uncompromising critic of war, poverty, violence and oppression, because all of those things affect his patients' lives,'' said Global Exchange spokeswoman Andrea Buffa.

Like Haiti, Rwanda is rugged and rural, impoverished, with a history of political instability. An estimated 500,000 Rwandans are infected with HIV, many of them women who were gang-raped during the genocide.

Despite a desire to bring his work to Africa, Farmer has previously avoided a major commitment. He feared making a promise he could not keep. "To work in a very poor country, like Haiti, or Rwanda, you need lots of resources, '' he said.

But publicity from Kidder's 2003 book, "Mountains Beyond Mountains," drew additional attention to the work of Partners in Health, the Boston charity that finances Farmer's work. That acclaim, commitments from wealthy American donors, and a blossoming relationship with the William J. Clinton Foundation based in New York conspired to bring Partners in Health to Rwanda.

Farmer's team is already settin

Monday, May 09, 2005

Live positive for HIV+ kids

Mid Day Mumbai (India)
May 8, 2005

At a fair held to celebrate their patron saint, Sister Shanti of St Catherine’s Home blindfolds a girl with her hands, coaxing her to pick coins out from a tub of water. A line forms behind her – some of these girls are HIV+.

There’s a risk of injuring themselves, of catching a cold from their best friends.

And yet there is no separation, no segregation in this home for AIDS orphans. “We can’t keep them in isolation,” says a mildly-shocked Sister Udaya, the home superintendent, “They have been living together all these years and are so used to it.”

It’s vastly different from the disturbing trend that has hit the headlines – of AIDS patients taking their lives to end the crushing depression brought on by its stigma, its fatal nature.

A sweeper hung himself in Mulund, two patients from the HIV+ ward at J J Hospital jumped from its fifth floor, both suicides a day apart.

Even while debates grew over the need for counselling AIDS-affected patients, St Catherine’s Home has devised its own antidote to the disease – regular doses of care and support.

This Andheri-based home was the first one for AIDS orphans in the country, for those children abandoned by relatives and friends once their parents died of the disease. Sister Shanti, a trained nurse, helped with the first HIV+ child who came in 1996.

“There was a lot of fear when we started in September 1996 because no one knew how to look after the children. Doctors said we were wasting time because they would die, but we wanted them to die with dignity,” says Sister Shanti.

The home decided it would not put the child on the anti-retroviral treatment usually prescribed for HIV+; instead the nuns devised a Care and Support Programme.

Relying on normal medicines that treat general ailments, the home chose to closely observe the infected children and treat them immediately.

For the sceptics, the home has lost only two children to the disease in ten years. It has had 48 children – the boys have been transferred as the home is for girls – and at present houses 31 HIV+ children.

The home even presented a paper on its developed method at the college of social work. Says Sister Udaya, “We rely on nutritional, emotional, psychological support and stigma reduction. It’s an all-round, holistic approach.”

The children stay in a separate hostel, equipped with kitchen, nursery and dispensary, but go to school with the rest of the home’s destitute, abandoned children.

“We have worked with the teachers, students, parents on stigma reduction. The other children are prepared – when there’s an accident and blood exposed, they know what to do. As for the HIV + child, she is told when she is able to understand.”

The HIV hostel is filled with sunshine – the dispensary lined with toys, weight charts motivate the smaller children to catch up, toothbrushes are carefully slotted against the wall and linen constantly changed. “It’s very costly – their nutrients, maintaining hygiene. They have three changes of nighties per day.”

In some cases, counselling has helped. Four-year-old Mary and Shivani came in as depressed babies, but were transformed by constant touching and hugging. One six-year-old with Hepatitis B has also recently been adopted by a Swedish single woman.

“We encourage children to keep in touch with their parents as long as they can,” says Sister Udaya. Many children fear death after seeing their parents die.

“We tell them that you will get the care that your parents never had. And at the end of the day, it’s death like any other,” points out Sister Udaya.

(By: Shradha Sukumaran)

Friday, May 06, 2005

Men in demand for home-based care in Zimbabwe

Varaidzo Dongozi
Zimbabwe Red Cross, Harare

While home-based care is viewed as one of the more successful ways of fighting stigma against people living with HIV and AIDS, it would have more impact if men took a more active role.

The community-based approach has proven to be a cost effective way of caring for people living with HIV and AIDS, with its strength deriving from the fact it is a community driven activity.

Many countries in Sub-Saharan Africa are scaling up home-based care services to people living with HIV and AIDS. Research has shown that community-driven initiatives increase community acceptance and reduce stigma.

Infected people have the opportunity to be looked after by their families and they continue to live in a family environment while they are being cared for.

The major challenge of the home-based care approach however was that it increased the burden on women, whom society viewed as the traditional caregivers.

“Most programmes in Zimbabwe include women as caregivers. This means that women at some point are forced to neglect some of their routine activities, in order to give this care”, said Emma Kundishora, Secretary General of the Zimbabwe Red Cross Society.

Phillipa Zengeya, a woman working with people living with HIV and AIDS in the Zvishavane project, one of the Zimbabwe Red Cross Society home-based care projects, in the Southern part of Zimbabwe, agreed that more women than men were willing to engage in care giving work.

“The problem that we are facing is that women are involved in care-giving work but they don’t make most of the decisions which promote the acceptance of HIV and AIDS and people living with HIV and AIDS in their community,” she said.

She also mentioned that because care-giving was viewed as the responsibility of women, it was not being given the prominence and respect it deserved considering its impact in the community.

Kindman Dimbo, a supervisor of the Zvimba home based care project, explained that care-giving was not an easy task for men. “For a man care giving is mostly associated with raising income for the family so it certainly is not a natural thing for man to do,” he said.

If men participate more in home-based care, it may reduce the stigma that is often faced by people living with HIV and AIDS. Their involvement would send positive signals since many people take more notice of what a man says than a woman.

“So men should use this to influence people’s response to HIV and AIDS,” said Dimbo said.

In recognition of this, the Zimbabwe Red Cross Society is making efforts to increase the number of male care facilitators in its 27 established home-based care projects. To date only 10 per cent of the Zimbabwe Red Cross Society’s 1,042 home-based care facilitators are men.

Dimbo explained that men could play a significant role in promoting community ownership of HIV and AIDS projects as a way of ensuring sustainability of the projects.

“As the opinion leaders in most communities, men can instil a sense of ownership because in their communities men are identified with a lot of importance. Therefore people will also view HIV and AIDS as an important issue for the community,” he said.

Acceptance of caregivers among both men and women has already proved to be high in areas where men have participated in giving care. One of the strengths of male involvement was that communication among men on HIV an AIDS had increased.

David Mukasa, a Uganda Red Cross volunteer and a man living with HIV, has experienced at first hand how significant of the involvement of other men can be.

“During the time when I was trying to accept my HIV-positive status, there were moments when only another man was able to understand my feelings of hopelessness and to console me,” he said.

This was because when he was too sick to provide for his family, it was difficult for him to view himself as an adequate head of the household.

“When I could no longer provide for the family, I felt useless to my family and it was only when other men who had gone through the same experience counselled me, that I realized that it was a phase that would probably pass when I became well again,” he said.

Although greater participation of men in giving care is vital, ensuring it happens will be a huge challenge.

“The obvious feeling within our culture is that men do not need to give care because women are there to do it. It is difficult to ask men to engage in ‘soft’ roles that are usually reserved for women as this is seen as a sign of weakness,” Dimbo points out.

[Published on 3 May 2005; Source file here]