The Family Experience of Fatigue in Heart Failure

Abstract

Fatigue is a symptom experienced almost universally by people living with a chronic illness. People diagnosed with heart failure have described experiencing significant levels of fatigue. The family experience of fatigue, that is, how families perceive, respond to, and manage fatigue, is unknown. Semistructured family group interviews with 22 families ( N = 62 family members) were conducted. Thematic analysis was undertaken to explore the family experience of fatigue. Fatigue was described as a significant symptom that affected physical, emotional, and social functioning at a family level. Fatigue was described as difficult to manage, and while most family members interviewed had developed a shared understanding of fatigue, some family members found acceptance of this invisible symptom more difficult. Spouses were more likely to express concern that fatigue, and especially increased fatigue, represented a decline in health. The study highlighted the importance of a shared understanding of fatigue from a family perspective.