AIDS and the urban family: its impact in Kampala, Uganda

Twenty-two families with one or more adult members with AIDS were extensively interviewed about sociodemographic variables, knowledge of AIDS, responses to AIDS, material needs, psychological state and perception of stigma. A total of 24 individuals were enrolled. Seven subjects did not permit contact with family members. Of the 24 subjects, four denied that they have AIDS, four informed everyone in the household of the AIDS diagnosis, eight told no one at all, and eight told some of their family. Subjects reportedly did not tell their family because the family would worry, they feared rejection, it is none of their business or they wouldn't understand. Family members expressed fear of loss, shock and disbelief at the diagnosis, but did not reject the subject or fear infection. Persons with AIDS and their families expressed fear of rejection from those outside the household due to the perceived stigma associated with AIDS. The labelling of someone as having AIDS relates to their physical condition, so with declining health, subjects and their families may avoid outside contacts. A direct impact of AIDS is to diminish mobility, decreasing available economic resources. These data indicate the importance of assisting families responsible for caring for AIDS patients.