What were they thinking?

Abstract

Heart failure (HF) is the largest palliative care population in the United States. Self-care patient education is a class I recommendation in HF clinical guidelines. Self-care is a 2-step decision-making process of maintenance and management, yet little is known about the thought processes or cognitive representations used. The purpose of this study was to identify and examine patients' cognitive representations in HF self-care with a unique, theoretically derived approach in a descriptive, exploratory study. Purposive sampling targeted hospitalized HF patients. Open-ended conceptual cognitive mapping approach elicited patient-generated items providing a visual display of cognitive representations. Recruitment continued until no new items were elicited. Thirteen white, primarily male (n = 11) patients reported 124 items when describing daily HF care. For self-care maintenance, diet, medication, and exercise were the most endorsed items. Patients also added items such as relaxation, distraction, or denial, not part of self-care guidelines. For self-care management, patient's items diverged widely from guidelines. A thematic analysis revealed a majority of the items were existential involving reflecting on their mortality and impact on families. Patients have an internal cognitive map with which they manage their HF. Palliative care nurses need to design care that takes this into account.