Participation in medical decision making: the patients' perspective.

PURPOSE Variability in reports of patients' preferences to participate in decision making may be due in part to a lack of understanding about how patients conceptualize their participation. The authors sought to learn more about how patients view their involvement in decisions related to their health care. METHODS The authors conducted individual interviews to allow patients to frame the decision-making process from their own perspective. The constant comparative-method approach to analysis was employed to ensure that the analysts defined the codes in a consistent manner. RESULTS Twenty-six persons were interviewed. The main themes discussed by the participants reflecting how they viewed their involvement in medical decision making are the following: 1) decision making is often an ongoing process in which patient participation may change over time, 2) decision making is performed within an extended social context, 3) the decisions patients report being involved in are often distinct from those traditionally studied (choice of treatment or screening strategies), 4) patient involvement in decision making occurs in response to physicians' recommendations, and 5) patients make choices in the context of their specific illness perceptions. CONCLUSIONS Participants in this study view their participation in decision making as including ideas distinct from those traditionally discussed by researchers. These findings suggest that the variability in patient participation noted in previous studies may be due in part to limitations in study design.