Is AIDS chronic or terminal? The perceptions of persons living with AIDS and their informal support partners

Abstract

Viewed as a terminal disease just a decade ago, HIV/AIDS is now often characterized as a chronic yet manageable disease. The goal of this study is to assess the perceptions of the course of the disease among persons living with AIDS and their informal support partners and to identify the themes that distinguish the differing perceptions of the epidemic. The findings from this research reveal that 41% of persons living with AIDS and 39% of their informal support partners perceive AIDS as chronic. By contrast, 37% of persons living with AIDS and 39% of the informal support partners perceive AIDS to be terminal rather than chronic. Among persons living with HIV/AIDS, those with lower levels of education and higher levels of perceived race-based discrimination were significantly more likely to view AIDS as a terminal rather than chronic condition. In addition, informal support partners in poor health were significantly more likely than others to view AIDS as terminal rather than chronic. Content analyses of the qualitative data revealed five broad themes related to the specific perceptions of AIDS, including medications, personal experience, cure, time/eventuality and education. The implications of these findings are discussed.