Caregiving behaviors and coping skills of caregivers to people with Acquired Immune Deficiency Syndrome

The purpose of the study was to describe the behaviors, attitudes, and coping skills of caregivers to people with Acquired Immune Deficiency Syndrome (AIDS) in the population of a moderate size metropolitan area in central North Carolina. Utilizing an ethnographic design based in Symbolic Interaction theory, 31 caregivers to people with AIDS (PWAs) were interviewed using an open-ended questionnaire. The Culture Free Self Esteem and Coping Inventories were used to measure aspects of the caregivers' personality and coping, and the Katz ADL was administered to estimate the degree of dependency of the PWA on the caregiver. Findings generally support those of national studies on caregivers to individuals with diseases or handicaps other than AIDS. Participants were found to have high degrees of filial responsibility, volunteerism, compassion, intelligence, resourcefulness in coping skills, and self esteem. Many primary caregivers find themselves overwhelmed with the requirements of the role. Secondary and attenuated caregivers are often recruited to assist in care, especially in the later stages of the disease. It is in this way that the disease drives the caregiving. The stigma associated with the disease often isolates the person with AIDS and the caregivers. Many caregivers reported negative reactions from others when their caregiving role was revealed, although a positive reaction was often received from well chosen individuals