Patients’ experience with heart failure treatment and self‐care—A qualitative study exploring the burden of treatment

Abstract Aims and objectives To explore chronic heart failure patients’ perceptions of the burden related to treatment and self‐care. Background Living with chronic heart failure entails following a demanding treatment regimen, with daily self‐care, which could make patients vulnerable to experiencing treatment burden. Burden of treatment is defined as the “work” the healthcare system passes on to the patients with respect to self‐care at home, and the impact this has on well‐being and quality of life. However, the burden of treatment is an emergent framework, and further research exploring burden among heart failure patients is required. Design Qualitative study employing semi‐structured interviews and content analysis. The study complied with the Consolidated Criteria for Reporting Qualitative Research (COREQ). Methods A sample of 17 heart failure patients recruited from an outpatient clinic in Norway. Interview transcripts were coded in Nvivo 11 and analysed using Malterud's systematic text condensation. Results Two main themes “emotional challenge” and “troublesome self‐care” emerged from the analysis. The first theme contained the following subthemes: “a new life situation,” “monitoring body signals,” “difficult transitions” and “feelings of guilt.” The second theme consisted of the subthemes “poor care coordination,” “lack of information and education” and “troublesome medication.” Conclusion Heart failure treatment constitutes challenges related both to self‐care and to emotional burden. The latter not previously clearly articulated in the concept of burden of treatment. Many patients are struggling emotionally, and this affects their self‐care ability in addition to affecting their well‐being and quality of life. Relevance to Clinical Practice Nurses are in a strategic position to play a pivotal role in identifying and responding to the emotional burden of treatment in heart failure patients, furthermore to guide and support in discharge planning and in outpatient setting to reduce the patients’ emotional distress and fear of failing.