Patient and informal caregivers' knowledge of heart failure: Necessary but insufficient for effective self-care

Aims: Self-care of heart failure (HF) is a process that is important, complex, and challenging. Little is understood of the contextual factors influencing self-care. We aimed to examine the individual and contextual factors perceived by patients and their informal caregivers’ to influence their willingness and capacity to undertake effective HF self-care. Methods and results: This was a qualitative study using semi-structured interviews with 42 patients with HF (NYHA Class II and III, mean age: 76 years, 64% males) and 30 nominated caregivers (63% spouses). All patients experienced severe and intrusive HF symptoms; a large proportion of patients practiced some of the range of recommended self-care activities. However, links between knowledge of HF and self-care were weak and long delays in seeking professional care were frequent. Factors consistently reported to influence self-care were faith in health professionals, beliefs about the local health system, and values linked to work associated with place, history, and culture. Conclusion: Knowledge of HF and its management is a necessary though not sufficient determinant of HF self-care. Individual and contextual factors influence willingness and capacity to undertake effective HF self-care.