Caregiving and Caregivers

Abstract

Remarkable strides have been made in the treatment of HIV/AIDS, yet a considerable proportion of those infected with the virus may continue to require care. Those with cognitive deficits, those aging into a second decade of HIV infection, and those struggling with debilitating physical and mental symptoms may need at home caregiving. Since its inception, AIDS caregivers have provided physical, mental, and spiritual support to the infected. As AIDS was first identified the majority of caregivers were young, white, gay males who were largely unprepared to provide care for a young, terminally ill partner or friend. Today, HIV is increasingly a chronic disease of the disenfranchised: the poor, especially women and men of color, injection drug users, sex workers, the homeless, the young, and those approaching their senior years. Paralleling changes in the HIV infected are changes in the face of AIDS caregivers. Caregivers are a diverse group of people with varied perceptions and experiences of caregiving. Yet even under the best of all possible circumstances, there is one factor which binds them together: the stress of caregiving for a person with AIDS is often experienced as being burdensome at some level. Whether caregiving burden is perceived to be largely a physical burden, a psychological burden, or both and what mediates the burdensome experience depends on a number of factors. Even when the amount of burden reported differs across caregiver group, the common sequelae of caregiving for a person with AIDS are often physical health problems and depression.