Being “on the alert” and “a forced volunteer”: a qualitative study of the invisible care provided by the next of kin of patients with chronic heart failure

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.