Journal of Consulting and Clinical Psychology 1994, Vol.62, No. 4, 746-756 Copyright 1994 by the American Psychological Association, Inc. 0022-006X/94/S3.00 SPECIAL POPULATIONS Caregiver Burden in HIV-Positive and HIV-Negative Partners of Men With AIDS Susan Folkman, Margaret A. Chesney, Molly Cooke, Alicia Boccellari, and Linda Collette This study examines factors associated with caregiver burden in 82 HIV-positive (HIV+) and 162 HIV-negative (HIV—) partners of men with AIDS. We expected HIV+ caregivers to report more burden than HIV- caregivers because of the toll of their disease on their resources. HI V+ caregivers did report more burden and, compared with the HIV— caregivers, they were more religious or spiri- tual, had less income, and coped by using more positive reappraisal and cognitive escape-avoidance and by seeking social support. Comparisons of HIV+ caregivers with 61 HIV+ partners of healthy men indicated that most differences between HIV+ and HIV- caregivers were associated with HIV seropositivity rather than caregiving. However, of the variables associated with HIV seropositivity, only religiosity or spirituality contributed independently to burden in HIV+ caregivers, suggesting a relatively weak link between HIV seropositivity and caregiver burden. The model explained 62% of the variance in burden in HIV+ caregivers and 36% of the variance in HIV- caregivers. The opportunistic infections and diseases that mark ad- vanced HIV infection create an onslaught of medical problems including chronic and severe diarrhea, wasting, dyspnea, severe musculoskeletal pain, neuropathies, blindness, and dementia. With an estimated 1 million Americans infected with HIV, the number of individuals with these medical problems will climb dramatically in the coming years. Most of these problems are managed at home, where the primary caregiver has a critical role in assisting the person with HIV infection, helping him or her sustain physical and psychological well-being. 1 The impor- tance of the primary caregiver is underscored by the general shift in the United States and many other countries from hospi- tal-based to community-based and in-home care to alleviate de- mands on the health care system and control health care costs (McCann & Wadsworth, 1992; Raveis & Siegel, 1991). Given the significance of primary caregivers in the AIDS epidemic, it is important to identify factors that are associated with care- Susan Folkman, Molly Cooke, and Linda Collette, Department of Medicine and Center for AIDS Prevention Studies, University of Cali- fornia, San Francisco; Margaret A. Chesney, Department of Epidemi- ology and Biostatistics and Center for AIDS Prevention Studies, Univer- sity of California, San Francisco; Alicia Boccellari, Department of Psy- chiatry, San Francisco General Hospital and Center for AIDS Prevention Studies, University of California, San Francisco. The research was supported by Grant MH44045 from the National Institute of Mental Health. We are grateful to our dedicated research staff and to the gallant men who participated in the research. Correspondence concerning this article should be addressed to Susan Folkman, Center for AIDS Prevention Studies, University of California, 74 New Montgomery Street, Suite 600, San Francisco, California 94105. giver burden. With this knowledge, health care professionals will be better equipped to provide support to caregivers so that caregivers, in turn, can carry out their role effectively and com- passionately. Caregiver burden has been conceptualized along objective di- mensions such as number of caregiving-related disruptions to family life, finances, and relationships with family and neigh- bors, and along subjective dimensions such as feelings of embar- rassment, overload, and resentment (Thompson & Doll, 1982; Vitaliano, Young, & Russo, 1991). We define caregiver burden as the extent to which the caregiver is bothered by caregiving- related disruptions having to do, for example, with work, com- munity activities, finances, or personal goals. This definition fo- cuses on the individual's appraisal of the disruptions caused by caregiving and is consistent with stress and coping theory (Laz- arus & Folkman, 1984), which underlies this study as well as other studies of caregiver burden (e.g., Haley, Levine, Brown, & Bartolucci, 1987; Lawton, Kleban, Moss, Rovine, & Glicks- man, 1989; Stephens, Norris, Kinney, Ritchie, & Grotz, 1988). In this study, we examine factors that are associated with caregiver burden in a specific group of primary caregivers— caregiving partners of gay men with AIDS. Gay men account for approximately 58% of cases of AIDS reported in the United States (Centers for Disease Control, 1993). Several studies sug- gest that between 30% and 40% of gay men are in committed, primary relationships (Barrett, 1993; Harry & Devall, 1978). Thus, the primary caregivers of many men with AIDS are likely to be their partners. Caregiving partners of men with AIDS can differ in five im- portant ways from traditional caregivers. First, caregiving part- 1 Primary caregiver refers to a person at home who has primary re- sponsibility for the care of a significant other who is ill. 746