RESUMO
BACKGROUND: Relatives' support is an important factor in how well people with chronic heart failure (CHF) manage their illness and everyday life. Deepening professionals' understanding of the content of relatives' invisible care activities, often characterized as care burden, is necessary to strengthen support services. OBJECTIVE: To explore the next of kin's experiences of invisible care and the inherent responsibilities in caring for a relative with CHF. DESIGN SETTING AND METHODS: Relatives were recruited from CHF outpatient clinics and home care services. Seventeen women and two men were interviewed, age range 45-83 years; 12 were partners, and seven were daughters. The qualitative interviews were taped and transcribed and thematic cross-case analyses were performed. RESULTS: Two main themes were revealed. The first, "being on the alert", refers to a perceived need, real or assumed, to be aware day and night, whether present with the patient or not, that occupies the mind, emotions, and body. The second theme, "being a forced volunteer", refers to two different dimensions: relatives' own perceptions of responsibility with regard to the patient's needs; and voiced or silent expectations from the patient, family members, and health personnel that the relative will help the patient. Both findings appeared to have positive and negative impacts on the relationship with the patient. CONCLUSION: The identified themes reflect how challenging being a next of kin of CHF patients can be. The results may deepen professionals' understanding of the relatives' invisible care burden and the importance of their subjective task-related feelings. More studies on invisible care and the attendant responsibilities are needed and also on relatives' inherent resources.
RESUMO
BACKGROUND: Several studies have shown that atrial fibrillation (AF) is associated with increased risk of death in heart failure (HF) patients. However, it is not clear whether this increased risk is independent of other risk factors. HYPOTHESIS: We hypothesized that AF would be an independent risk factor for death in a large cohort of HF patients. METHODS: Patients referred to Norwegian HF outpatient clinics were enrolled between October 2000 and February 2008. Patients with heart rhythm other than AF or sinus rhythm were excluded. Mortality data were obtained from the National Statistics Bureau, Statistics Norway with the last update February 2008. RESULTS: There were 4048 patients included in the analysis, with a median follow-up of 28 months. Adherence to guidelines regarding medical treatment was high. In univariate analysis, AF patients (n = 1391) had a higher risk of death than patients in sinus rhythm (n = 2657) (hazard ratio [HR] 1.181; 95% confidence interval (CI), 1.044-1.336; P = 0.008). However, after adjusting for confounding factors (age, New York Heart Association class, coronary artery disease as the main cause of HF, use of any loop diuretic, hemoglobin level, and serum creatinine), AF was no longer associated with increased risk of death (HR 1.037; 95% CI, 0.901-1.193; P = 0.619). CONCLUSIONS: In this cohort of heart failure patients receiving optimal medical treatment at specialized HF clinics, AF was not associated with increased risk of death after adjusting for confounding factors.
