Carers’ needs in advanced heart failure: A systematic narrative review

Informal caregivers play a pivotal role in the care of people living with advanced heart failure, however, carers’ needs have not been clearly identified.

The aim of this study is to explore the evidence on palliative care needs expressed by carers of people with heart failure.

Five electronic databases (CINAHL PLUS, EMBASE, Medline, PsychInfo and SCOPUS) were systematically searched and articles published January 2003–June 2014 with a qualitative methodology focusing on the palliative care needs of carers of people living with heart failure were included.

Data was systematically extracted from 15 articles using an inductive methodology for the thematic analysis. Ten broad categories emerged from which three key areas of support needs were identified; psychosocial support to maintain a sense of normalcy; support with daily living; support navigating the healthcare system. The articles were predominantly published in the UK and USA with a total sample size across all articles of 270, the majority of which were older female spouses. Results included a combination of carers, patients and professionals thoughts, however data was extracted for carers only.

Carer’s needs initiate when the patient is diagnosed and continue throughout the disease into bereavement. These needs are continuously prioritised and reprioritised depending on the patients’ medical stability. A holistic approach is needed to support these carers, incorporating heart failure and palliative care specialties. Further research is warranted to explore different methods of delivering support and information and to evaluate whether these reduce carer burden.