Stigma

Monday, January 15, 2007

Enthusiastic caregivers and silent sufferers

By, IRIN PlusNews, December 13, 2006

CABINDA - Fear of stigmatisation in Angola is keeping people living with HIV/AIDS in hiding. Caregivers are more than willing to help but are having a hard time finding patients to take care of.

"People prefer to keep silent and to die in silence," Ambrósio Cabral, coordinator of Angola's Red Cross HIV/AIDS programme, told IRIN/PlusNews.

Cabinda, Angola's oil-rich northern enclave, has a population of 350,000 and a 3.2 percent HIV infection rate. Out of the 16 homecare workers trained in the province this year, only five have work and care for a total of 12 people between them.

In those few cases, caregivers visit without wearing their Red Cross shirts and caps to avoid raising neighbours’ suspicions.

"The greatest shame is to have an AIDS-related death in the family, because it is associated with sex and witchcraft," said Evaristo Lucas Kanica, coordinator of the Red Cross HIV/AIDS programme in Cabinda.

PSYCHOLOGICAL BURDEN

Of the 10 patients that caregiver José Cuabi N'Zau has seen over the past year in Cabinda city, only two have disclosed their status to their families.

One hides his antiretroviral drugs in a suitcase, others take them secretly, most lie to their friends and family, and all of them hope that their caregivers will help keep their secret.

Some families demand caregivers reveal their relative's status. N'zau cares for a woman who keeps the fact that she and her daughter are HIV-positive from her husband. "It's morally difficult for me not to inform him," he said.

Secrecy and fear have become a psychological burden for caregivers: only they are aware of the truth. And because patients cannot talk to family and friends, caregivers are on call at any hour of the day or night to find food, to take a patient to the hospital, to be there when a patient becomes depressed or just simply for company.

Caregivers receive US $30 per month to look after 10 people - "it's a great deal of work and a great responsibility," Kanica said.

Established in 2005, the homecare programme in Cabinda aims to link into Voluntary Counseling and Testing (VCT) with work done by the Central Hospital and the Catholic and Methodist churches in the hope they will refer HIV-positive people to their services.

"The church is a [safe place] for the Angolan people, where they can say what they cannot share with their family," explained Casal.

KWANZA NORTE

With 16 trained caregivers and no one to care for, the situation is similar in Ndalatando, the provincial capital of Kwanza Norte.

No one who is HIV-positive has disclosed their status in this northern province. According to Salvador João Zimba, provincial secretary for the Red Cross: "People who are infected in the provinces hide themselves".

"Our concern is finding those who live with HIV," Zimba said. Ndalatando’s only VCT center opened two months ago and people are still fearful to talk about HIV/AIDS.

Some 180km from Ndalatando, in the province of Dondo, things are the same: caregivers are ready to help but people living with HIV/AIDS refuse to reveal themselves.

The prevalence rate in Dondo is less than one percent and the national average for Angola's 14 million population is almost four percent. UNAIDS estimates that between 100,000 and 600,000 Angolans live with the virus.

NEW DEVELOPMENTS

Home-based care has only just taken-off in Angola, an indication of the growing response to HIV/AIDS following the end of the 27-year civil war in 2002.

While the epidemic is a relatively recent phenomenon and the average prevalence rate is relatively low, the number of people falling ill is growing and beginning to overwhelm hospitals.

In October, in Angola's capital Luanda, IRIN/PlusNews encountered a patient in the final stages of AIDS who spent 24 hours in a wheelchair on a drip waiting for an empty bed in the AIDS ward of the Américo Boavista Hospital. She had been employed as a domestic worker and her employer had bought all her medicine, including serums, needles, antibiotics, vitamins, and anti-malarial drugs. She died three weeks later.

"The doctor never spoke with her family about the matter. She was just another 'animal' in a bed in some hospital," the woman's former employer, speaking anonymously, said.

In 2007, the Red Cross intends to expand their caregiver programme to all of Angola's 18 provinces, training 200 workers to tend to 2,000 HIV-positive people and their 14,000 family members.

This year, the Angolan Network of AIDS Service Organisations (ANASO) with the support of the Global Fund to Fight AIDS, Tuberculosis, and Malaria trained a total of 85 caregivers from the different provinces during two seminars. A third will be held in January.

ANASO intends "to create a new dynamic to fight stigma in communities so that people feel they can reveal their sickness to their families and accept their condition," the group's secretary-general, António Coelho, said.

Until that happens, caregivers and patients will have to keep their secrets.

[Produced in partnership with the International Federation of Red Cross and Red Crescent Societies: www.ifrc.org]

[ENDS]


Source: http://www.plusnews.org/AIDSreport.asp?ReportID=6611&SelectRegion=Southern_Africa&SelectCountry=ANGOLA

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