Carers and breathlessness

Purpose of the review: Informal carers play a key role in supporting patients living with breathlessness in advanced disease, but with considerable impacts on their own well-being. The purpose was to review recent advances in our understanding of the caring role in refractory breathlessness, its impacts on carers, and interventions to support them.

Recent findings: A systematic literature search resulted in 28 included papers that could be mapped to four broad areas of carer enquiry: the carer role (n=6), role impact (n=7), carer support (n=11), and carer views (n=4). Search terms focused on breathlessness, but few of the included papers were exclusively on
breathlessness: most were disease-related, predominantly COPD. There were a range of methodologies, including four systematic reviews; UK studies were most common.

Summary: Carers of patients with breathlessness take on a role characterised by uncertainty, largely unsupported by health care professionals (HCPs). HCP acknowledgement of these carers, their contribution, and the impact of the caring role, is lacking. The patient-carer dyad should be considered the unit of care. Carer intervention should be individualised, supporting carers as clients
and co-workers. There was a dearth of studies recruiting via primary care, focusing on conditions other than COPD, and longitudinal work.