Abstract
Objective. This study explores how much people with HIV/AIDS wanted and how much they actually perceived being involved in the decision to take or not to take antiretroviral treatment (ART). The congruence between desired and perceived decisional involvement was also related to decisional conflict. Method. Cross-sectional (N = 79), the Control Preferences Scale assessed patients' preferred versus perceived role in treatment decision making. The Decisional Conflict Scale measured patients' perceived difficulties in decision making. Results. Although a minority of patients (32%) perceived their role as shared decision making, the majority (59%) preferred shared decision making. Some did not desire shared decision making, with 28% preferring to decide on their own versus 13% wanting their physicians to decide for them. Overall, 58% did not feel they had achieved their desired role in decision making (half of whom perceived more control and the other half less control than preferred). Participants declining ART felt more pressure to decide alone compared with those taking ART (P < 0.01). Decisional conflict was expressed by 53% and was highest when physicians unilaterally made decisions about ART for patients who preferred shared decision making (P < 0.001). Conclusions. In this study, most physicians do not meet their patients' desired roles in decision making. One-third of people taking ART feel less involved than they desire. More critically, half of those declining ART feel pressured to decide alone, suggesting that physicians should remain involved in the decision to reject treatment, as this requires careful monitoring and periodical revisiting. Because lack of shared decision making is related to decisional conflict, physicians may reduce decisional conflict by meeting patients' desires for shared decision making.
