Becoming a patient with heart failure

Abstract Objective: The purpose of this study was to gain a better understanding of the process of becoming a patient with heart failure, a process of identity formation. Are there clues in the patients’ stories about heart failure that might give us a better idea of how patients adjust to heart failure and what heart failure means to them? Meanings that individuals attach to events or situations are central to development of identity and subsequent behaviors. Design And Setting: Qualitative methods involving detailed interviews and grounded theory method were used in an outpatient cardiology department of a large health care facility in northeast Ohio. Patients: Twenty-one patients with a diagnosis of heart failure were conveniently selected and interviewed for this research. Patients were selected on the basis of having a left ventricular ejection fraction of 35% or less and New York Heart Association class II, III, or IV. Other possible selection criteria (eg, VO 2Max , walk test, or dyspnea) were not available for all patients and thus did not constitute consistent selection criteria. A broad net was cast for patients with varying characteristics to see if common processes and experiences existed regardless of the differences in clinical indicators. Methods: Patients were interviewed in the examining room as part of a regularly scheduled visit with their cardiologists. All interviews were tape recorded and fully transcribed. Field notes and relevant patient chart data (eg, age, sex, race, marital status, cause of heart failure, comorbidities, history of hospitalization, New York Heart Association functional class, left ventricular ejection fraction) were included in the transcribed interviews. The transcribed interview was read and responses were given initial conceptual codes. These coded passages were categorized according to more abstract categories or concepts and underlying processes that encompass them. This process continues until all relevant passages have been categorized and subsumed under higher-order (more abstract or general) categories. Results: The process of becoming a patient with heart failure involves a gradual process of taking on a new identity. Five distinct phases of this process of identity formation emerged from the data: a crisis event, the diagnosis, the patient’s and family’s response to the diagnosis, their acceptance and adjustment to life with this condition, and making the decision to get on with life. Conclusions: Most research on heart failure has focused on patients or their families farther along in the trajectory of this condition. We know little about the psychosocial experience of the early phases of this condition. Becoming a patient with heart failure is a process of searching for a meaning to this condition (what is it? what does it mean for the future?) and a process of taking on a new identity and appropriate role behaviors. This process takes place over a period of time. This suggests that the formation of individual identities evolve as new information becomes available, as meanings are attached to the new circumstances, and as a process of negotiating new roles among family members (and among patient, family members, and clinicians) takes place. The findings of this study suggest possible interventions that may positively affect the patient’s condition and the quality of family life. (Heart Lung ® 1999;28:284-92.)