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JOHANNESBURG, 10 June 2008 (PlusNews) - Temba* had watched a string of friends and family die from AIDS-related illnesses before he himself tested positive for HIV in 2004. Convinced he was next, he kept his status to himself and lay awake at night contemplating suicide.

“I thought about shooting myself,” he told IRIN/PlusNews.

A nurse referred Temba to Ekupholeni Mental Health Centre, a non-profit project housed on the grounds of Natalspruit Hospital in Katorus, a township southeast of Johannesburg, South Africa. “I saw a counsellor here and told her everything,” said Temba. “She told me I wasn’t alone in this and told me about the support group.”

A number of studies have found that people living with HIV are more likely to experience depression and anxiety as they struggle to deal with their diagnosis and adjust to life with a chronic, life-threatening and highly-stigmatised illness. Those, like Temba, who shoulder the burden alone because they’re afraid to disclose are especially vulnerable.

Depression can have serious health impacts for someone living with the virus. There is increasing evidence that depression or stress accelerates HIV disease progression. It has also been associated with a lack of motivation to seek health care in the first place and problems adhering to antiretroviral (ARV) treatment which can lead to the development of drug resistance and limit future treatment options.

NGOs filling the gap

Officially, the South African government has a policy of community-based mental health care. But, according to Rita Thom, a psychiatrist from the University of Witswatersrand, who has conducted research on the mental health of people living with HIV, “there has been a complete lack of commitment to developing community mental health services. Families are shouldering the burden.”

Non-governmental and community-based organisations like Ekupholeni are doing their best to fill a gap that has grown even larger as a result of HIV and AIDS.

With sporadic support from private donors and a small grant from South Africa’s Department of Social Services, Ekupholeni runs support groups and provides individual counselling to 3,000 clients a year, most of them affected by HIV/AIDS in some way.

The service relies mainly on lay counsellors. “We can’t rely on psychologists or there’d be no service, especially as it needs to be free,” said Antje Manfroni, Ekupholeni’s director.

Besides the usual support groups for people living with HIV, Ekupholeni also runs groups for HIV-positive children and their caregivers, for survivors of sexual abuse and domestic violence, for teenagers with behavioural problems and for people struggling to deal with multiple bereavements.

An outlet for grief

For Temba, as with many other people living with the virus, the source of his depression and anxiety was not just his HIV status, but the loss of several people close to him in the space of a few years, most of them as a result of AIDS. “My sister died because of HIV in 1999, but she didn’t disclose,” said Temba. “I also lost my brother in 2000 and another brother in 2003. My girlfriend, she died of TB (tuberculosis) in 2003, before I learned my status and my mother in 2006.”

''They start to grieve for one person, and then another one dies and it's a step back''

In addition to the support group for people living with HIV, Temba joined a group of about 20 men who have experienced multiple bereavements. Gloria Ndwandwe, a care worker and counsellor who runs the men’s bereavement group noted that, although deaths due to AIDS had decreased slightly with the government’s roll-out of free ARV treatment, stigma and traditional belief systems still prevented many people from seeking treatment. As a result, it was still not unusual for one individual to lose two or three family members within a few months.

“They start to grieve for one person, and then another dies and it’s a step back,” she told IRIN/PlusNews. With many men reluctant to express their grief in front of women, the all-male group encourages greater openness.

“In the HIV group, there’s a small number of men and they’re not open like the women,” said Temba, “but in the other [bereavement] group, they talk freely. When I have a problem, I can share it with the other men.”

The next best thing

With psychotherapy and anti-depressant medications not widely available and mental health professionals in short supply, especially in the public health system, lay counsellors and support groups may be the next best thing for people living with HIV who experience mental health problems. In fact, Thom’s research has found that support groups can play an important role in heading off depression.

Thokozile Mdaki, another Ekupholeni client who belongs to a bereavement group for women, put it simply: “If you talk, you feel healed.”

The South African Depression and Anxiety Group (SADAG), another nongovernmental organisation, has helped establish 180 support groups around the country aimed at addressing the mental health of people living with HIV, particularly in under-resourced rural areas.

Zane Wilson, the organisation’s founder noted that in Limpopo [a mainly rural, northern province] for example, not one qualified psychiatrist is working in the public sector. “We’re trying to fill gaps that the government can’t manage,” she explained. “If we put in support groups, at least the home-based care workers have a place to send people.”

Keeping support groups going, however, depends to a large extent on the energy and enthusiasm of their facilitators. Elizabeth*, who lives in the small town of Heilbron in the central Free State, told IRIN/PlusNews that her support group had folded because HIV-related stigma prevented many people from attending. She now works as a volunteer at her local clinic, mainly to fulfil her need to talk to other people living with the virus.

“I see a lot of people with HIV who are depressed cause they’re scared to disclose so they don’t have support,” she said. “At our clinic, we only have one counsellor and sometimes she’s not there so people come and go without help.”

For Temba, life is “much better” since he joined the two support groups at Ekupholeni: “At home everyone has passed away, only my sister is left, but I feel happy when I come here.”

*Not their real names