Going public as an AIDS family caregiver.

Images of AIDS invoke fears of contagion, disability and formidable death, and moral overtones directed toward drug use, sexuality and sexual identity and freedom. Responses to these images are both private and public, and have profound consequences for individuals whose lives have been touched by the disease, both the person with AIDS and the family caregiver. The purpose of this paper is to analyze in detail 'going public,' one category of a substantive theory of AIDS family caregiving. This category was developed from a grounded theory study of 53 AIDS family members who were asked to describe their experiences as an AIDS family caregiver during an indepth interview. Data were content analyzed using constant comparative analysis. Going public referred to how AIDS family caregivers let others known that they were caring for a PWA. Specifically, going public entailed selecting appropriate persons and audiences to tell, formulating approaches to communicating information, and considering the risks and benefits of the possible choices. The description of going public as an AIDS family caregiver details the assertiveness involved in political action and social change, contrasted with the isolation and secrecy involved in maintaining relationships with others under the condition of a stigmatizing illness. Data revealed a particular emphasis on the phenomenon of 'guilt by association'. Because of their close relationship to a person with AIDS, caregivers were obligated to share the stigma of AIDS and were likewise discredited. Findings from our study emphasize the tremendous personal suffering experienced by caregivers which was associated with AIDS stigma in the form of rejection, loss of friends and harassment. Data also revealed the strong commitment of many caregivers to social activism which ranged from participating in educational efforts to marching in demonstrations. The rationale for the apparent increased activism among AIDS family caregivers compared to other groups of caregivers is explored. Going public highlights both the personal suffering and social manifestations of AIDS, significant issues to consider in planning health services for the second decade of the AIDS epidemic.