Living well with heart failure: evaluation of an education and support programme for patients and caregivers

Abstract

Background/Aims Living with advanced heart failure places a considerable burden on patients and their caregivers. Improving the education and support given to patients and caregivers, with the input of palliative care services, could support them to live well with heart failure. This study evaluated an 8-week programme of education and support delivered in a day hospice for patients diagnosed with heart failure and their informal caregivers. Methods An 8-week programme was delivered five times between January 2018 and March 2019, with a total of 39 participants (24 patients and 15 caregivers). Two focus groups were conducted at the end of each programme (one with patients and one with caregivers). Groups were recorded and transcribed verbatim, and inductive thematic analysis was performed. Results Most patient participants were male (92%) and aged >70 years, while most caregiver participants were female (93%) and aged >50 years. The main themes from the patient participants' focus groups regarding the programme were the importance of knowledge; support and communication; having a gateway to resources; and the concept of living with heart failure. The main themes from the caregiver participant focus groups were becoming stronger; altered outcomes for the future; and connection through knowledge. All participants gave positive feedback about the programme, with increased knowledge about heart failure and access to peer support being highlighted as particularly valuable. Conclusions This hospice-based model of support and education, involving patients and their caregivers, has considerable potential as a means of helping these individuals to live well with heart failure. Greater integration between cardiac services and palliative care is needed to support this growing patient group.