The Role of Illness Perceptions on Health-Related Decision-Making—A Focus Group Study of Patients with Long-Term Conditions

Abstract

Facing long-term conditions, patients often find themselves in situations where they need to make health-related decisions. The aim of this study was to gain a better understanding of patient preferences for involvement in decision-making as well as the process of decision-making both inside and outside the hospital setting. Seventeen participants with various long-term somatic conditions and different types of treatment regimens participated in this focus group study. Preference for involvement in decision-making was quantitatively measured prior to the interviews using the Control Preference Scale. To obtain the qualitative data, an interpretive description strategy was used. The Self-Regulation Model of illness perceptions was applied as a conceptual framework for discussing the findings. A number of discrepancies between questionnaire- and interview data were discovered, indicating that cognitive beliefs about personal involvement in decision-making are influenced and changed by emotions as well as a number of contextual actors, including personal values concerning everyday quality of life. This study provides insight into understanding how context influences self-regulation of health related decisions amongst patients with a number of long-term conditions. Moreover, decisions are not isolated events, they evolve over time. Thus, data on patients' desired level of involvement in decisions based on questionnaire responses alone should be interpreted with caution. Healthcare providers may benefit from exploring the patients’ illness representation in the decision process and thus reduce the risk of talking at cross-purposes.