Living with heart failure; patient and carer perspectives

Abstract

Patients with heart failure have multiple readmissions to hospital, a poor prognosis and varying quality of life. This paper explores how patients with heart failure and their family carers cope with daily life. 36 patients and 20 family caregivers were interviewed in five centres in the UK. Analysis showed that living with heart failure can be frightening, restrictive and distressing for both patients and their family carers. Patients found most difficulty coping with functional limitation and adapting to living with heart failure, but also reported particular problems due to side effects of medications, co-morbidities and a lack of psychosocial support and rehabilitation services. Those with less socio-economic resources found it harder to cope. Patients from minority ethnic groups held different beliefs about the illness and its treatment, and some had profound problems communicating with health and social care professionals that made managing the disease even more difficult. Caring for a person with heart failure often has a considerable impact on the psychological and physical health of family caregivers. Psychosocial support and rehabilitation services provided at diagnosis and after an acute episode would enable families to better manage living with this syndrome.