Looking for an answer under the shadow−Life narratives among people living with HIV/AIDS and their caregivers

Abstract

In Taiwan, the number of cases of newly diagnosed AIDS is increasing every year, and those diagnosed tend to be younger people. Antiretroviral therapy has increased the overall survival rate; however, people living with AIDS face many problems in adapting to this lifelong illness. In this study, we investigate the life narrative and interactions of people living with AIDS and their caregivers. Using a narrative approach, 12 participants, consisting AIDS patients and their caregivers, were invited to one-on-one in-depth interviews to explore their life experience. The study’s results identified five themes: an inability to speak to others about AIDS, isolating oneself from the world, promises that cannot be given, condemnation from others for having AIDS, and having an unknown future. The stories were based on these five themes. Understanding the life narratives of those with AIDS can help to address and resolve the problems associated with living with AIDS. When medical science and technology are advancing, the Internet, media, and other more directed education have enabled easy acquisition of AIDS-related knowledge. AIDS has become a chronic disease. However, the public still cannot accept AIDS. People living with AIDS and their caregivers have not been able to walk out of the shadow of the disease, as even for those who are willing to reveal their illness, the results do not always turn out well. People living with AIDS and their caregivers can only secretly take care of and encourage each other.