We examine health-related worries among a sample of informal AIDS caregivers (N = 640), people caring for a friend, loved one or kin outside the formal health care system. Two dimensions of worry are assessed: (1) a generalized sense of vulnerability to sickness; and (2) perceptions of care provision as risky in itself. Many informal AIDS caregivers, whether they are HIV seronegative or seropositive, harbor considerable worry about their own vulnerability to sickness, yet relatively few appear to worry about caregiving as a risky activity per se. We document important variation in the levels and correlates of worry across caregivers as they differ by serostatus and health. We also uncover variation in worry rooted in sociodemographic background and the differential experience of care-related stress. Prevailing theories of risk perception help to illustrate why informal caregivers might differ from other populations in their view of AIDS. Vignettes and quotes culled from marginal comments, which were systematically recorded by trained interviewers during implementation of the survey, supplement the quantitative data.
AARP (American Association of Retired Persons) (1997). Family caregiving in the US – Findings from a national survey. Bethesda, MD: National Alliance for Caregiving and AARP.
2.
Aiken, L.H. , Sloane, D.S. and Klocinski, J.L. (1997). Hospital nurses’ occupational exposure to blood: Prospective, retrospective, and institutional reports. American Journal of Public Health, 87, 103–107.
3.
Alonzo, A.A. and Reynolds, N.R. (1995). Stigma, HIV and AIDS: An exploration and elaboration of a stigma trajectory. Social Science and Medicine, 41, 303–315.
4.
Aneshensel, C.S. , Pearlin, L.I., Mullan, J.T., Zarit S.H. and Whitlatch, C.J. (1995). Profiles in caregiving: The unexpected career. San Diego, CA: Academic Press.
5.
Aneshensel, C.S. , Pearlin, L.I. and Schuler, R.H. (1993). Stress, Role Captivity, and the Cessation of Caregiving. Journal of Health and Social Behavior, 34, 54–70.
6.
Baumgarten, M. (1989). The health of persons giving care to the demented elderly: A critical review of the literature. Journal of Clinical Epidemiology, 42, 1137–1148.
7.
Bosk, C.L. and Frader, J.E. (1990). AIDS and its impact on medical work: The culture and politics of the shop floor. The Milbank Quarterly, 62, (Suppl 2): 257–279.
8.
Briar, K. and Kaplan, C. (1990). The family caregiving crisis. Silver Spring, MD: National Association of Social Workers.
9.
Broadhead, R.S. and Fox, K.J. (1993). Occupational health risks of harm reduction work: Combatting AIDS among injection drug users. In G.L. Albrecht and R.S. Zimmerman (Eds.), Advances in medical sociology: The social and behavioral aspects of AIDS, pp. 123–142. Greenwich CT: JAI Press, Inc.
10.
Centers for Disease Control (1994). Human immunodeficiency virus transmission in household settings – United States. Morbidity and Mortality Weekly Report, 43(19), 347–356.
11.
Centers for Disease Control (1995).Case-control study of HIV seroconversion in health-care workers after percutaneous exposure to HIV infected blood – France, United Kingdom, and United States, January 1988 – August 1994. Morbidity and Mortality Weekly Report, 44(50), 929–933.
12.
Clipp, E.C. , Adinolfi, A.J., Forrest, L. and Bennett, C.L. (1995). Informal caregivers of persons with AIDS. Journal of Palliative Care, 11, 10–18.
13.
Cooke, M. and Sande, M.A. (1989). The HIV epidemic and training in internal medicine. New England Journal of Medicine, 321, 1334–1337.
14.
Derogatis, L.R. , Lipman, R.S., Rickels, K., Uhlenhuth, E.H. and Covi, L. (1974). The Hopkins Symptoms Checklist (HSCL): A self-report symptom inventory. Behavioral Science, 19, 1–15.
15.
Douglas, M. and Wildavsky, A. (1982). Risk and culture: An essay on the selection of technical and environmental dangers. Berkeley, CA: University of California Press.
16.
Ettner, S.L. and Weissman, J. (1994). Utilization of formal and informal home care by AIDS patients in Boston: A comparison of intravenous drug users and homosexual males. Medical Care, 32, 459–470.
17.
Festinger, L. (1957). A theory of cognitive dissonance. Palo Alto, CA: Stanford University Press.
18.
Friedland, G.H. , Kahl, P., Saltzman, B., Rogers, M., Feiner, C., Mayers, M., Schable, C. and Klein, R.S. (1990). Additional evidence for lack of transmission of HIV infection by closer interpersonal (casual) contact. AIDS, 4, 639–644.
19.
Gentry, E.M. , Salmon, C.T., Wooten, K.G. and Jason, J.M. (1993). Using indices to differentiate dimensions of knowledge regarding modes of HIV transmission in the US Population, 1987–1989. Journal of Acquired Immune Deficiency Syndromes, 6, 76–81.
20.
Gershon, R.M. , Vlahov, D. and Nelson, K.E. (1990). The risk of transmission of HIV-1 through non-percutaneous, non-sexual modes – A review. AIDS, 4, 645–650.
21.
Glantz, L.H. , Mariner, W.K. and Annas, G.J. (1992). Risky business: Setting public health policy of HIV-infected health care professionals. The Milbank Quarterly, 70(1), 43–79.
22.
Heimer, C. (1988). Social structure, psychology, and the estimation of risk. Annual Review of Sociology, 14, 491–519.
23.
Herek, G.M. (1990). Illness, stigma and AIDS. In P. Costa and G.R. VandenBos (Eds.), Psychological aspects of serious illness, pp. 103–150. Washington, DC: American Psychological Association.
24.
Herek, G.M. and Capitanio, J.P. (1993). Public reactions to AIDS in the United States: A second decade of stigma. American Journal of Public Health, 83, 574–577.
25.
Howe, A.L. , Schofield, H. and Herrman, H. (1997). Caregiving: A common or uncommon experience?Social Science and Medicine, 45, 1017–1029.
26.
Institute of Medicine (1988). Confronting AIDS: Update 1988. Washintgon, DC: National Academy Press.
27.
Katz, S. , Ford, A.B., Moskowitz, R.W., Jackson, B.A. and Jaffe, M.W. (1963). Studies of illness in the aged: The index of ADL, a standardized measure of biological and psychosocial function. Journal of the American Medical Association, 185, 914–919.
28.
Kelen, G.D. , DiGiovanna, T.A., Celentano, D.D., Kalainov, D., Bisson, L., Junkins, E., Stein, A., Lofy, L., Scott, C.R.J., Sivertson, K.T. and Quinn, T.C. (1990). Adherence to universal (barrier) precautions during interventions on critically ill and emergency department patients. Journal of Acquired Immune Deficiency Syndromes, 3(10), 987–994.
29.
Kronenfeld, J.J. , Glik, D.C., and Jackson, K. (1993). Risk perceptions and AIDS. In G.L. Albrecht and R.S. Zimmerman (Eds.), Advances in medical sociology:The social and behavioral aspects of AIDS, pp. 37–57. Greenwich, CT: JAI Press, Inc.
30.
Lawton, M.P. and Brody, E.M. (1969). Assessment of older people: Self-maintaining and instrumental activities of daily living. The Gerontologist, 9, 179–186.
31.
LeBlanc, A.J. (1993). Examining HIV-related knowledge among adults in the US. Journal of Health and Social Behavior, 34(1) 23–36.
32.
LeBlanc, A.J. , Aneshensel, C.S. and Wight, R.G. (1995). Psychotherapy use and depression among AIDS caregivers. Journal of Community Psychology, 23, 127–142.
33.
LeBlanc, A.J. , London, A.S. and Aneshensel, C.S. (1997). The physical costs of AIDS caregiving. Social Science and Medicine, 45(6), 915–923.
34.
Mann, J.M. , Tarantola, D.J.M. and Netter, T.W. (Eds.) (1993). AIDS in the world. Cambridge, MA: Harvard University Press.
35.
Mullan, J.T. , Pearlin, L.I. and Skaff, M.M. (1995). The bereavement process: Loss, grief, recovery. In I. B. Corless, B.B. Germino and M.A. Pittman (Eds.), A challenge of living, dying, death and bereavement, pp. 221–239. Boston, MA: Jones & Bartlett Publishers.
36.
National Commission on AIDS (1993). Preventing HIV transmission in health care settings: A report by the national commission on AIDS. AIDS Patient Care, June, 138–156.
37.
Nelkin, D. (1989). Communicating technological risk: The social construction of risk perception. Annual Review of Public Health, 10, 95–113.
38.
Pearlin, L.I. , Aneshensel, C.S. and LeBlanc, A.J. (1997). The forms and mechanisms of stress proliferation: The case of AIDS caregivers. Journal of Health and Social Behavior, 38, 223–236.
39.
Pearlin, L.I. , Mullan, J.T., Aneshensel, C.S., Wardlaw, L.A. and Harrington, C. (1994). The structure and functions of AIDS caregiving relationships. Psychosocial Rehabilitation Journal, 17, 51–67.
40.
Pearlin, L.I. , Mullan, J.T., Semple, S.J. and Skaff, M.M. (1990). Caregiving and the stress process: An overview of concepts and measures. The Gerontologist, 30, 583–594.
41.
Pearlin, L.I. , Semple, S.J. and Turner, H.A. (1988). Stress of AIDS caregiving: A preliminary overview of the issues. Death Studies, 12, 501–517.
42.
Pleck, J.H. , O’Donnell, L. and Snarey, J. (1988). AIDS-phobia, contact with AIDS, and AIDS-related job stress in hospital workers. Journal of Homosexuality, 15, 41–54.
43.
Prohaska, T.R. , Albrecht, G., Levy, J.A., Sugrue, N. and Kim, J. (1990). Determinants of self-perceived risk for AIDS. Journal of Health and Social Behavior, 31, 384–394.
44.
Rescher, N. (1987). Risk and the social value of a life. In J.M. Humber and R.F. Almeder (Eds.), Quantitative risk assessment, pp. 225–237. Clifton, NJ: Human Press.
45.
Schiller, N. , Crystal, S. and Lewellen, D. (1994). Risky business: The cultural construction of AIDS risk groups. Social Science and Medicine, 38(10), 1337–1346.
46.
Schulz, R. , O’Brien, A.T., Bookwala, J. and Fleissner, K. (1995). Psychiatric and physical morbidity effects of dementia caregiving: Prevalence, correlates, and causes. The Gerontologist, 35, 771–791.
47.
Shapiro, M.F. , Hayward, R.A., Guillemot, D. and Jayle, D. (1992). Residents’ experiences in, and attitudes toward, the care of persons with AIDS in Canada, France, and the United States. Journal of the American Medical Association, 268(4), 510–515.
48.
Siegel, K. and Krauss, B.J. (1991). Living with HIV infection: Adaptive tasks of seropositive gay men. Journal of Health and Social Behavior, 32(1), 17–32.
49.
Slovic, P. (1987). Perception of risk. Science, 236, 280–285.
50.
Slovic, P. , Fischoff, B. and Lichtenstein, S. (1978). Accident probabilities and seat-belt usage: A psychological perspective. Accident Analysis and Prevention, 10, 281–285.
51.
Slovic, P. , Fischoff, B. and Lichtenstein, S. (1982). Response mode, framing and information processing effects in risk assessment. In R.M. Horarth (Ed.), Question framing and response consistency: New directions for methodology of social and behavioral science, number 11, March 1982, pp. 21–36. San Francisco, CA: Jossey-Bass.
52.
Sontag, S. (1989). AIDS and its metaphors. New York: Farrar, Strauss and Giroux.
53.
Stallings, R.A. (1990). Media discourse and the social construction of risk. Social Problems, 37(1), 80–95.
54.
Stapel, D. and Reicher, S. (1994). Availability and the perception of risk. Social Cognition, 12(1), 1–17.
55.
Teuber, A. (1990). Justifying risk. Daedalus, 119(4), 235–254.
56.
Turner, H.A. , Catania, J.A. and Gagnon, J. (1994). The prevalence of informal caregiving to persons with AIDS in the United States: Caregiver characteristics and their implications. Social Science and Medicine, 38, 1543–1552.
57.
Tversky, A. and Kahneman, D. (1974). Judgment under uncertainty: Heuristics and biases. Science, 185, 1124–1131.
58.
Wardlaw, L.A. (1994). Sustaining informal caregivers for persons with AIDS. Families in Society: The Journal of Contemporary Human Services, June, 373–384.
59.
Weitz, R. (1989). Uncertainty in the lives of persons with AIDS. Journal of Health and Social Behavior, 30, 270–281.
60.
Weyant, R.J. , Bennett, M.E., Simon, M. and Palaisa, J. (1994). Desire to treat HIV-infected patients: similarities and differences across health-care professions. AIDS, 8, 117–121.
61.
Wright, L.K. , Clipp, E.S. and George, L.K. (1993). Health consequences of caregiver stress. Medicine, Exercise, Nutrition, and Health, 2, 181–195.
