Predictors of uncertainty in adults with an acute exacerbation of heart failure

Abstract

assessment and management of this symptom is not a major focus of patient education for heart failure self care. Worsening of this symptom is often overlooked by patients as a sign of worsening HF. Understanding the patient’s experience of fatigue may be useful to guide the development of interventions to improve symptom monitoring in HF. Methods: In a qualitative study involvolving 33 chronic HF patients and 20 caregivers participants were asked to talk about their symptoms. Sixteen participants (13 patients and 3 caregivers) identified fatigue as the ‘‘most difficult’’ or ‘‘most distressing’’ thing about living with HF and an additional 8 participants (6 patients and 2 caregivers) identified fatigue as one of their symptoms that could use better treatment. Ten dyads and a total of 24 participants are included in this qualitative analysis describing what it is like to experience fatigue as the most distressing symptom for patients with heart failure? Results: Two overarching themes emerged from the patients’ and caregivers’ experiences with fatigue: Symptom Experience and Meaning. Each theme included several categories. The Symptom Experience of fatigue included ‘‘knowing’’ the symptom, the ‘‘physical experience’’, the ‘‘planning’’ necessary to cope with and recover from the symptom, and what the patient ‘‘can’t do’’ because of fatigue. The Meaning of fatigue included two categories; the ‘‘existential meaning’’ and the ‘‘contextual meaning’’ of fatigue. Conclusion: There is a need to develop clinical tools for more comprehensive assessment and management of fatigue in HF. Patient education for self care is needed to help patients recognize and interpret fatigue as an early symptom related to HF. Patients are aware of their mortality when they experience fatigue, for them it represents the life limiting nature of HF. Unfortunately, health care providers may not understand the distressing nature of the experience. Routine communication between patient and provider should include serial assessments of fatigue, acknowledge of the importance of fatigue as symptom of HF, and be open to the possibility of discussing patient concerns with end of life.