Using funerals to tackle stigma in rural communities

When a group of aid workers in the rural areas of northern KwaZulu-Natal (KZN) and the Eastern Cape were confronted with a growing number of people dying from AIDS, they began to use funerals to educate communities about the disease. The Matatiele region in southern KZN and the neighbouring districts of Maluti and Mount Fletcher in the Eastern Cape lack adequate infrastructure, the people live in poverty-stricken conditions and are severely affected by the pandemic. After the usual methods of HIV/AIDS education failed to hit home, the Environmental Development Agency (EDA) began addressing mourners at funerals to tackle the stigma and discrimination surrounding the disease. "When people attend the burial of a person who died of AIDS, it is then that they are most receptive," explained EDA voluntary counselling and testing (VCT) manager, Lerato Niklaas. EDA workers generally approach the family of the deceased on the eve of the funeral to convince them of the importance of publicly disclosing the cause of death, to raise awareness in the community. According to EDA, only about 20 percent of families agree to discuss HIV/AIDS during the funeral service and it was mostly younger people who consented. During the service, a family member informs the community of the cause of death, followed by an EDA aid worker who tackles a range of AIDS-related subjects, such as prevention, support groups, VCT, home-based care and nutrition. The NGO also invites HIV-positive persons to speak and, in villages where "funeral talks" have taken place, offers follow-up workshops to introduce caregivers to the community. Reactions to the talks have been "outstandingly" positive, EDA projects coordinator, Mosilo Kuali, told PlusNews. "People are relieved that someone finally starts talking about AIDS." Consequently, stigma in the community has dwindled and more people are being tested and disclosing their status. "The support people receive at funerals where AIDS is discussed translates into greater social support and safety in the entire community," Kuali said. NGOs in the rural areas of KZN and the Eastern Cape are confronted with particularly harsh living conditions that make the fight against HIV/AIDS even more difficult. Nearly 85 percent of the inhabitants survive on social grants, 75 percent of the youth are unemployed, and 45 percent are illiterate. "Twelve out of 20 people are HIV-positive in this region, and the numbers are rising quickly," said Kuali. But in the entire district of Maluti, only 14 people were receiving antiretroviral (ARV) treatment. "This is only a drop in the ocean," she added. The fear of discrimination in the region is so high that people dying from AIDS are hidden away in houses and community health workers are refused entry. Inaccessible and ill-equipped health facilities have made it even more difficult for aid workers to help the rural population access care and live positively with the virus. The majority of local clinics often did not have drugs, condoms or gloves available. Only provincial hospitals stocked rapid HIV tests and ARV drugs, but they were beyond the reach of many poor, rural people. "People are left alone out there. The rural population suffers three times more [from AIDS] than people living in urban areas, because they lack access to information, prevention methods and medical care," said Kauli. "The government needs to improve conditions." Although a number of additional health care facilities had been set up in the Eastern Cape - a province infamous for its lack of infrastructure - these newly erected clinics were not functional, complained Kuali. "They are short staffed, closed on weekends and don't have water or electricity."