Abstract
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.
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.
| Original language | English |
|---|---|
| Pages (from-to) | 165–173 |
| Number of pages | 9 |
| Journal | Current Opinion in Supportive and Palliative Care |
| Volume | 11 |
| Issue number | 3 |
| Early online date | 6 Jun 2017 |
| DOIs | |
| Publication status | Published - Sep 2017 |
Keywords
- Carers
- breathlessness
- COPD