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.

Effectiveness of Mobile Phone-Based Interventions for Improving Health Outcomes in Patients with Chronic Heart Failure: A Systematic Review and Meta-Analysis

“…However, previous studies have reported low adherence rates in self-care behaviors, due to the complexity of self-care and lifelong requirement of medical treatment [9,10]. Thus, many studies have evaluated various types of interventions to improve HF self-care behaviors and associated outcomes [11][12][13].…”

A qualitative study of living with the burden from heart failure treatment: Exploring the patient capacity for self‐care

“…Burdens related to treatment and self‐care in HF have been characterized in prior research as overwhelming, difficult work; and adherence to HF self‐care and treatment regimens has been reported to be low (Gallacher et al, ; Mlynarska et al, ; Riegel et al, ). Despite patients' knowledge of self‐care tasks, the burden of the illness and treatment generates problems in maintaining self‐efficacy, which is a personal attribute that changes over time by learning from attempts to manage the HF condition (Nordfonn, Morken, Bru, & Husebø, ; Riegel et al, ; Spaling, Currie, Strachan, Harkness, & Clark, ). None of the aforementioned notions fully captures the capacity term in the HF context.…”

Health Promotion and Self-Management Among Patients with Chronic Heart Failure

“…In the qualitative studies, patients reported that the demands to adhering the complex treatment regimens are onerous and difficult to meet. Some patients also reported troubles on learning new medications and dealing with the burden of medication side effects [32,33].…”