Heidemarie Kremer1, Gail Ironson. 1. University of Miami, Department of Psychology, 1204 Dickinson Dr., Suite 37D, Coral Gables, FL 3324-2070, USA. HeidemarieKremer@yahoo.de
Abstract
OBJECTIVES: This study reports on the sources of antiretroviral treatment information that are important to people living with HIV (PLWH) in treatment decision-making and their preferred role in treatment decision-making. DESIGN: Cross-sectional qualitative and quantitative study. METHOD: PLWH in Florida (n = 79) with a CD4-nadir below 350 cells/microl were interviewed about the sources of information they used in decision-making about antiretrovirals and their knowledge of resistance. Their desired involvement in the treatment decision was assessed using the Control Preferences Scale. RESULTS: The ten most frequently cited sources of information included the primary HIV-physician, magazines written for PLWH, drug advertisements, Internet, HIV-positive friends, seminars/conferences/symposia, expert literature, other physicians, peer educators, and naturopaths/nutritionists. The HIV-physician was the most important source of information, followed by publications. PLWH declining antiretrovirals placed significantly less importance on information from their HIV-physician than those accepting antiretrovirals. Poor and less well-educated participants (in particular African-American women) had less knowledge of resistance. Most, but not all PLWH preferred to be actively involved in decision-making. The greater the desire for involvement, the more sources of information were used in decision-making. Knowledge of resistance was not significantly associated with the preference for involvement in decision-making. CONCLUSIONS: Physicians and publications, particularly those targeting PLWH, play a key role in informed decision-making. Physicians need to ensure that PLWH are informed and understand resistance as a consequence of non-adherence. Patients' needs for information are different from their desires to participate in decision-making. Regardless of their treatment knowledge, most PLWH want to be involved in the decision-making process.
OBJECTIVES: This study reports on the sources of antiretroviral treatment information that are important to people living with HIV (PLWH) in treatment decision-making and their preferred role in treatment decision-making. DESIGN: Cross-sectional qualitative and quantitative study. METHOD: PLWH in Florida (n = 79) with a CD4-nadir below 350 cells/microl were interviewed about the sources of information they used in decision-making about antiretrovirals and their knowledge of resistance. Their desired involvement in the treatment decision was assessed using the Control Preferences Scale. RESULTS: The ten most frequently cited sources of information included the primary HIV-physician, magazines written for PLWH, drug advertisements, Internet, HIV-positive friends, seminars/conferences/symposia, expert literature, other physicians, peer educators, and naturopaths/nutritionists. The HIV-physician was the most important source of information, followed by publications. PLWH declining antiretrovirals placed significantly less importance on information from their HIV-physician than those accepting antiretrovirals. Poor and less well-educated participants (in particular African-American women) had less knowledge of resistance. Most, but not all PLWH preferred to be actively involved in decision-making. The greater the desire for involvement, the more sources of information were used in decision-making. Knowledge of resistance was not significantly associated with the preference for involvement in decision-making. CONCLUSIONS: Physicians and publications, particularly those targeting PLWH, play a key role in informed decision-making. Physicians need to ensure that PLWH are informed and understand resistance as a consequence of non-adherence. Patients' needs for information are different from their desires to participate in decision-making. Regardless of their treatment knowledge, most PLWH want to be involved in the decision-making process.
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