What Does Heart Failure Mean to You

Introduction Knowing how patients understand the meaning of heart failure (HF) is important for effective communication between health care providers and patients. This could help patients to engage in self-care based on a clear understanding of their conditions. The aim of this study was to explore the patients’ meaning of HF by asking patients, “What does heart failure mean to you?” Methods We conducted a qualitative descriptive study. Adult patients with any type of HF were enrolled during hospitalization in the US. Participants were purposively selected using maximum variation sampling to ensure inclusion of patients from various age groups, gender, and different durations of HF. Patients with cognitive impairment (a Montreal Cognitive Assessment score below 22) or severe untreated mental illness were excluded. Open-ended 1:1 interviews were audio-recorded and transcribed verbatim. Data were analyzed using qualitative inductive content analysis. Results Twenty patients with HF (aged 36-84 years, 65% male, 65% White, 60% with some college education, 60% unemployed, 45% married) were enrolled. The duration of HF ranged from 4 months to 41 years (median 6 years). Most were NYHA class III (67%), and the median left ventricular ejection fraction was 30%. Four themes of what HF meant to patients emerged: (a) fearful label, (b) pathophysiological understanding, (c) limitations, and (d) adjustment. Under the theme ‘fearful label,’ two subthemes were identified: death sentence and scary label. The meaning of “failure” elicited fear and was associated with the belief, “I am going to die.” However, many patients defined HF based on its pathophysiology with two subthemes, insufficient pumping and its consequences into the theme “pathophysiological understanding.” In addition, many patients defined HF based on the limitations the diagnosis incurred in their lives. The subthemes limited life engagement, limited physical state, and emotional distress were identified. One of the main challenges was no longer being able to do what they want to do or used to be able to do. Finally, “adjustment” emerged with three subthemes: acceptance, adaptation, and life status change. For these patients, living with HF meant trying to accept it, learning how to deal with it, and making changes in their daily lives. Conclusions The HF label itself might influence patients’ perception of their conditions or self-care behaviors. Discrepancies in understanding or an inability to accept the label of HF can make it difficult for patients to engage in self-care. Health care providers need to understand what HF means to patients before providing detailed information about the condition to make sure that patients can hear and accept information about HF.