Doctor's Review: Medicine on the Move

August 16, 2017
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The burden of AIDS

A nurse, a psychiatrist and his wife help South African women left to raise their orphaned grandkids

In 2000, Dr Klaus Minde, a professor of psychiatry and pediatrics at Montreal's McGill University, was on sabbatical in South Africa with his wife Nina, a psychologist. The Mindes, who earlier in their careers had collaborated on the first textbook on infant psychiatry, had relocated to Johannesburg to allow Klaus to pursue his research in parent-child attachment. He had previously worked for the UN in Uganda and Nigeria, and was looking forward to studying the ways in which attachment disorders are affected by cultural context.

Dr Minde's research went well, but one night, as he and Nina attended a dinner at a convention for child psychiatrists in Cape Town, fate lent a hand and changed their stay in South Africa.

As Dr Minde recalls, he was cringing at the music when a pleasant-looking woman asked him to dance. While negotiating the dance floor, he discovered that Rose Letwaba was the head nurse of a child psychiatry unit battered by South Africa's AIDS pandemic. By the end of the evening, she and the Mindes had struck up an enduring friendship. With Nina Minde's help, the hardworking nurse would launch a landmark initiative for a group of South Africans ignored in the struggle against AIDS, and go on to be nominated in 2003 for South African Woman of the Year. Her cause? The grandmothers left to care for grandchildren when their own children die from the disease.

Rose is the type of person easily described as a dynamo. Determined but with a carefree, infectious laugh, she exudes the kind of energy that lets her persevere in conditions few Canadians could imagine. Her child psychiatry unit, the Alex-Tara Children's Clinic, is based at the East Bank Clinic in Johannesburg's Alexandra Township, a one square-kilometre shantytown of 400,000 people.

After Apartheid
Alexandra is a vivid reminder of South Africa's white-ruled past and the policies that segregated urban blacks in squalid locales with few services for decades. Today, the township remains an extremely poor black area surrounded by the fences of more affluent, predominantly white neighbourhoods. It has high unemployment, a high crime rate, high levels of child sex abuse, inadequate housing and services, and frighteningly large numbers of people enduring the additional hardships of life with HIV or AIDS.

This was the situation Rose was faced with in 1994 when children's mental health services were first introduced into Alexandra after the end of the white regime. South Africa has very few health professionals specializing in pediatric psychiatry overall (Johannesburg, with nine million people, has five child psychiatrists), and the new clinic was immediately in demand. Apart from Rose, the staff consisted of a psychiatrist, a part-time psychologist and a part-time occupational therapist. All four worked nonstop to develop strategies to combat decades of poverty, brutality and neglect.

But in 1998, she started to notice a drop in children's attendance at the clinic. It became apparent that most had stopped coming because one or both of their parents were dying or had died from AIDS, at the time a very taboo subject in South Africa.

In response, Rose started South Africa's first bereavement group for children who had lost parents to AIDS. Over 30 percent of the children seen by the East Bank Clinic arrived with ADHD and learning disorders, but throughout the 1990s rates for depression and anxiety disorders rose steadily, growing from 10 percent in 1994 to 20 percent by 2000 as more and more children were orphaned by AIDS.

With their parents gone, the children's primary caregivers invariably became their maternal grandmothers, many of whom struggled alone to cope with the economic needs, familial demands and social prejudice that accompanied their new roles. Largely unaided by government and often too elderly or ill to eke out a living, these "Grannies of Sorrow" found themselves shunned or even forced to move because of their neighbours' prejudices.

This was the situation that Rose described to the Mindes the night they met in 2000. At the time, the East Bank Clinic's mandate was to strictly provide pediatric mental healthcare, but it was obvious that the clinic would have to widen its scope if it was to confront Alexandra's AIDS crisis head on. Rose, for one, could see that there was a definite need to develop a program that supported grandmothers looking after orphaned grandchildren. "I saw the sadness every time the grannies brought the children to the clinic," she confides on a recent fund-raising tour of Canada. "I thought that if they got together to share their experiences, they could comfort each other and that would help both them and their grandchildren."

When the Mindes arrived in Alexandra to visit Rose at the clinic, Nina, too, was struck by the same idea. As she explains, "I'm a grandmother as well as a psychologist. I've always felt partial to grandmothers and the way they play a vital but sometimes unrecognized role. When you attended rounds at East Bank, there was always a granny present, so it seemed natural to involve them further. With Rose's grandmothers, you could see the need."

 

According to Klaus, "Once we saw the situation, we also knew a support system would help. The AIDS orphans' grandmothers are not psychiatrically compromised. These are normal people overwhelmed by stress and challenges that are hardly bearable. Their grandchildren cry because their mothers died and the grannies cry because their children died. Even though it hadn't been done before, we knew that if they had a platform they'd be able to make it work."

Silence and Stigma
Shortly afterwards, the East Bank Clinic's Gogo Granny Outreach Program was launched with Nina providing advice and organizational acumen. The program was the first in South Africa to provide both services and a forum for group therapy for grandmothers battling with the loss of their children, the care of their grandchildren and their own health. At the start, the group consisted of three members who already knew each other, an important consideration initially. "You have to remember the stigma attached to AIDS in South Africa," says Rose. "At best, people won't drink your water or tea even if they dare to visit you. So with a new concept like this, the participants felt overwhelmed. Even within our first small group, they didn't want to speak. When we expanded, it took another four months before the grannies could talk directly about AIDS. But once they established a trusting relationship, they learned to cry openly and talk about their problems freely. It helped them cope better."

Today, there are 30 Gogo Grannies and 172 orphaned grandchildren in the program. They attend twice-weekly sessions that are unstructured, mood-driven and, in keeping with local traditions, bookended by gusts of song. The grandmothers also have access to parenting classes to help them develop the skills and disciplinary means to care for their young charges. Some grandmothers need extensive counselling and support because of the expanding numbers of children they become responsible for as AIDS continues to sweep through their families. Others must deal with children who are HIV positive.

Over time, the grannies have taken command of the opportunities offered to them. As the program moves into its fourth year, some have obtained grants to make much-needed improvements to their homes. The group has established a vegetable garden that offers more than simple therapy -- it now provides fresh produce for 35 families -- and the grannies also manufacture artisanal wares sold at fairs to generate income. They make beadwork HIV badges which are sold in drives to the corporate sector, and have learned to sew clothes and linens on donated sewing machines -- the closest many have been to a machine apart from a shared taxi.

Initiating Change
Impressively, they have found the strength to reach out to the community to share both an AIDS prevention message and an educational model that demonstrates the importance of mental health support for caregivers. The grandmothers visit schools as part of the AIDS Education Initiative and lead workshops throughout their province of Gauteng. They also appear on TV talk shows and in public service spots to share their concerns, advocate safe sex, and talk about the harsh realities of early death and gruelling survival.

Most importantly, they have each other. As Rose points out, they have made the transition from strangers unable to unite over a common predicament to a community that not only manifests solidarity, but is becoming increasingly proactive about its shared plight. "The grannies are like sisters now. They share everything and they come up with their own ideas when the need arises. They know when someone or their child, or grandchild is sick. One granny lost a grandson to a shooting. The others felt she wouldn't make it and did everything for her. With their help, she managed to live another two years. As well, everyone now agrees that we should always first think of AIDS orphans in the context of families and the community. We cannot allow child-headed households, and we must provide alternatives."

Rose herself has been justly recognized for all her hard work. As well as being nominated for Woman of the Year in 2003, she was selected as the top nurse in her province and the second best in all of South Africa. For her part, she says she couldn't have done it without the Canadian couple she met in Cape Town. "As a young and inexperienced nurse, I learned so much from the Mindes," she says. Nina and Klaus, in turn, stress that Rose's dedication is really what's responsible for the success of the project. "Many people have come to her and said, 'This is wonderful, why didn't we do this earlier? How do we make it bigger?'" says Klaus Minde. "But they don't want to do it themselves. This is not an easy thing to spread because it takes extraordinary strength. And that's what Rose has. Now we have to make sure the funds are in place to ensure both infrastructure and education."

Most recently, Rose spent three weeks in Canada to address that very situation. In a fund-raising trip sponsored by the Stephen Lewis Foundation, which now helps to underwrite the Gogo Grannies, she spoke to health professionals and public service unions. The latter gave her more than 40 sewing machines to take home to South Africa, and there is now talk of the Montreal Children's Hospital Foundation adopting the grandmothers. As for the Mindes, resident once more in Montreal, things couldn't be better -- their chance to help the Grannies of Sorrow has soared past expectations, bringing hope to young and old in a bold effort to reclaim shattered lives.

 

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