COVERTLY HELD SUBCULTURAL BELIEFS MAY INFLUENCE PATIENTS' TREATMENT DECISIONS

Purpose and Background: Paradigms of shared medical decision making assume that the basic premises underlying a treatment decision will be openly acknowledged by both patient and medical provider. However, patients’ decisions may be affected by strong subcultural beliefs which they are reluctant to reveal to their providers. This may be especially likely to occur when a disease has strong social or cultural resonance, as with HIV. Among the general population of African-Americans, mistrustful subcultural beliefs or “conspiracy theories” about HIV are common. Little is known about these beliefs’ prevalence among African-Americans with HIV, or their effects on treatment decisions.

   Method: Fifty HIV-positive African-Americans (50% female, mean age 44.5) who were regularly engaged in care at an outpatient HIV clinic serving a largely disadvantaged inner-city population completed a measure of mistrustful subcultural beliefs about HIV.

   Results: A significant minority either endorsed these conspiracy theories or were unwilling to reject them, as follows:

• The U.S. Government caused or developed HIV: 32% agree, 22% neutral.
• Drug companies prefer not to develop a cure for HIV: 26% agree, 14% neutral.
• HIV was designed to eliminate undesirable minorities: 14% agree, 20% neutral.
• Doctors use patients as “guinea pigs” without their consent: 12% agree, 27% neutral.
• There is a secret cure for HIV: 10% agree, 24% neutral.
• HIV has not been proven to cause AIDS: 9% agree, 20% neutral.

   In no case had patients discussed these beliefs with their HIV care providers, nor were providers aware that these beliefs existed among regular clinic attendees. Thus, there was no opportunity for providers to address these misconceptions or to consider their effect on patients’ treatment decisions.

   Conclusions: This study found that a significant proportion of HIV-positive African-Americans who are engaged in HIV treatment nevertheless doubt the basic premises of the medical model of HIV. A substantial number believe in HIV conspiracy theories and doubt the beneficence of the medical system. These beliefs are likely to be even more common and strongly held among HIV-positive African-Americans who are not engaged in medical care for HIV. It is critical that medical providers caring for HIV-positive African-Americans be aware of these common subcultural beliefs about HIV and be prepared to address them in the course of treatment, whether or not a patient expresses specific doubts.