South Africa: scaling up care for community caregivers

Children play jumprope on a dirt road.

Children, including ten-year-old Itumeleng, play with friends in a township near Johannesburg, South Africa. Photo: PATH/Lynn Heinisch.

Editor’s note: This is the first of a three-part series of blog posts by PATH’s president and CEO Steve Davis about his experiences visiting PATH programs in three African countries this July.

In an impoverished township 35 miles east of Johannesburg, I met Dimakatso Sibeko. Wrapped in a wool blanket, the grieving 42-year-old mother sat in the dirt, leaning against the wall of her home, surrounded by other women. Last week, she buried her two-year-old daughter. A year ago, she buried her husband.  All she has left is her ten-year-old daughter, Itumeleng.

Woman and daughter in the sun.

Sibeko and her daughter Itumeleng. Photo: PATH/Lynn Heinisch.

While PATH is best known for our innovations in vaccines, drugs, devices and diagnostics, the only way these tools will have their intended impact is in the context of strengthened systems and services.

In fact, many of our programs focus on system and service innovations (PATH’s fifth platform”). Here in South Africa, we’re designing models and building evidence to improve the lives of orphans and vulnerable children like Itumeleng.

House-to-house community caregiving

Sibeko’s family lives in a makeshift settlement, bordered by a brick wall with barbed wire on top. Small, dark shacks with corrugated tin roofs crowd together on red dirt, with streams of water and sewage running down the streets where children play.

As part of PATH’s project, a community caregiver named Nomakhwezi Bafo visits Sibeko’s family a few times a month. She believes that Sibeko’s daughter and husband both died from AIDS. She says Sibeko is on antiretroviral drugs but doesn’t take them consistently, because she lacks food to eat with the medicine and can’t afford to travel to the clinic.

“The only thing I am sure of is the poverty. They had nothing. We used to find them eating pap [corn porridge] given to them by a neighbor,” Bafo said.

Steve Davis speaking with PATh staffer.

PATH staff member Yolanda Moyo described the toll that this work can have on the caregivers’ psychosocial well-being. Photo: PATH/Lynn Heinisch.

Bafo provides psychosocial support to 15 area families raising orphans and vulnerable children. Some of them are widows like Sibeko; others are grandparents, aunts, or neighbors who care for children who have lost parents; some are children who are heads of households. Bafo walks miles each weekday, checking on the families, listening to their needs, and referring them to resources when possible.

“It’s very emotional. It takes everything in you. When you meet with these families it takes you back to your past and it haunts you,” Bafo said. “You need to be professional. You need to be strong for them. They’ve got nothing.”

Caring for the caregivers

PATH partners with a community organization that provides training on psychosocial well-being for caregivers like Bafo so that they are better equipped to care for and protect children. This training is provided in all nine South African provinces, helping caregivers to hone their coping skills and access resources to support themselves and the families.

A workbook with blue ink and illustrations.

Part of the curriculum delivered to caregivers. Photo: PATH/Lynn Heinisch.

“They’ve got emotional burnout and pain. People are dying and they don’t know what to do,” said Sibongile Tloubatla, a psychologist who trains the caregivers. “They come back to visit the family after two days and the person has died. And how do you handle children who are in pain?”

Caregivers themselves can become traumatized and depressed, she said, so they learn in training how to manage the stress.

“They look after other people but they don’t look after themselves,” Tloubatla said. “We help them take care of themselves, so they can be effective in their work.”

Designing the best program for national scale-up

Given PATH’s emphasis on large-scale impact and partnering with the countries where we work, we will continue to test our models, design best approaches, and then transition this program to the government of South Africa late next year, so that it can be scaled up. In preparation, we are conducting studies on the effectiveness of the approach.

An estimated 2.5 million South African children have lost one or both parents to AIDS. The lives of the families I met this week are stark illustrations of the cyclical link between poor health and poverty. Some 20 percent of South Africans, roughly 10 million people, are unable to purchase enough food for an adequate diet. This extreme poverty both contributes to and is compounded by the AIDS crisis.

Talking with Bafo, Tloubatla, and the women who run the program, I was once again so impressed and inspired by the dedication, intelligence and compassion of community leaders and volunteers who are working so hard to improve the lives of children devastated by AIDS and poverty, and the people who care for them.

With the scope of the challenge, their one-by-one impact seems like a drop in the bucket. Yet, we all know that for any individual, just one person can make all the difference in the world. Our task then, is to leverage these results to have the greatest possible impact.

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Posted in Featured posts, HIV/AIDS, Maternal and child health | Permalink

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