Care and support for people living with HIV/AIDS

Report on the global HIV/AIDS epidemic – June 2000Not surprisingly, the great majority of individuals who suspect or know they areinfected do not wish to disclose their status publicly. In the absence of support forsharing the news, most people shrink from telling their spouse or partner that theyhave HIV. Families protect their loved ones from disclosure during and even after illnessand death, and those who care for them often collude in the denial. In a city inSouth Africa with a high prevalence of HIV infection, one hospital runs a training programmefor providers of home-based care for the dying in which the word “AIDS” isnever mentioned.It takes no great leap of the imagination to see that, for individuals, this wall ofsilence hinders both prevention and care. If people are so afraid to acknowledge oreven find out that they are infected, they will lose precious opportunities for wardingoff or treating illnesses brought on by the infection (see pages 105-106). If couplescannot talk about risks that either one may have taken, it is hard for either partner tobring up the issue of condoms or HIV testing as a way of preventing further spreadof the virus to the spouse or child.The stigma surrounding AIDS can extend into the next generation, placing a furtheremotional burden on the shoulders of orphans and other survivors. When childrenwhose parents had died of AIDS in the hard-hit rural community of Rusinga Island,Kenya, were asked about the cause of their parent’s death, the single most commonresponse was witchcraft or a curse. Often, they gave detailed explanations of thenature of the curse. None mentioned AIDS.This reluctance to recognize the cause of death was not the result of ignoranceabout AIDS. As Figure 13 shows, knowledge about AIDS was more or less universalamong these children. Many were also prepared to recognize that AIDS had killedmany people in their community. The closer the questioning came to home, however,the less the willingness to acknowledge the personal impact of the disease. Not oneof the 72 AIDS orphans in the study said that their parents had died of AIDS.Uninformed and hence vulnerableIn the last decade, extraordinary strides have been made in imparting to people thebasic facts about HIV: how it is transmitted and how it can be prevented.Remarkably high proportions of people of all ages in most continents know aboutHIV and AIDS, and most can repeat the basic facts about the transmission and preventionof HIV infection.Despite generally high levels of basic knowledge, however, millions of people aroundthe world are still vulnerable to HIV because they do not know the basic facts.Pockets of ignorance and misinformation survive even in the worst-affected populations.In the South African town of Carletonville, for example, only 40% of men orwomen knew that an individual can live with the virus for many years without any40