Farquhar Morag
School of Health Sciences, University of East Anglia, Norwich, Norfolk, UK.
Curr Opin Support Palliat Care. 2017 Sep;11(3):165-173. doi: 10.1097/SPC.0000000000000281.
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.
A systematic literature search resulted in 28 included articles 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 articles were exclusively on breathlessness: most were disease-related, predominantly chronic obstructive pulmonary disease (COPD). There were a range of methodologies, including four systematic reviews; UK studies were most common.
Carers of patients with breathlessness take on a role characterized by uncertainty, largely unsupported by healthcare 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 individualized, supporting carers as clients and coworkers. There was a dearth of studies recruiting via primary care, focusing on conditions other than COPD and longitudinal work.
非正式照护者在支持晚期疾病中患有呼吸急促的患者方面发挥着关键作用，但对他们自身的幸福也有相当大的影响。本文旨在综述我们对难治性呼吸急促中照护角色的理解、其对照护者的影响以及支持他们的干预措施的最新进展。
系统的文献检索得出28篇纳入文章，这些文章可映射到照护者研究的四个广泛领域：照护者角色（n = 6）、角色影响（n = 7）、照护者支持（n = 11）和照护者观点（n = 4）。检索词聚焦于呼吸急促，但纳入的文章中很少有专门关于呼吸急促的：大多数与疾病相关，主要是慢性阻塞性肺疾病（COPD）。研究方法多样，包括四项系统评价；英国的研究最为常见。
呼吸急促患者的照护者承担着一个具有不确定性的角色，在很大程度上未得到医疗保健专业人员（HCPs）的支持。HCPs对这些照护者、他们的贡献以及照护角色的影响缺乏认可。患者 - 照护者二元组应被视为照护单位。照护者干预应个体化，将照护者作为客户和同事给予支持。通过初级保健招募的研究、关注COPD以外疾病的研究以及纵向研究较少。
