Department of Nephrology, Faculty of Medicine, University of Ioannina, Ioannina, Greece.
Department of Nephrology, General Hospital of Kavala, Kavala, Greece.
J Ren Care. 2023 Mar;49(1):56-72. doi: 10.1111/jorc.12403. Epub 2021 Oct 27.
End-stage kidney disease (ESKD) patients require specific and continuous care, which affects caregivers' quality of life (QOL). It is necessary to define the basic problems and restrictions upon family caregivers of renal patients affecting their physical and psychological status.
The main objectives of this narrative review were to examine the literature over the past 10 years, to describe factors associated with QOL of caregivers of patients with ESKD, and to identify the level of subjective burden reported by caregivers.
A literature search was carried out using the following electronic databases: PubMed, Medscape, Science Direct, Scopus, PsychINFO and other scientific sources. Keywords included 'quality of life', 'caregivers', 'end stage kidney or renal disease patients', 'burden' and a combination of these terms. Only studies from January 2010 to December 2020 were included in this study.
The results found that there was significant burden and distress experienced by caregivers that affected their QOL. Patients' QOL is associated with caregivers' QOL. The hours of caring per day and the long-term replacement therapy are associated with great burden.
More awareness to caregivers' QOL is required to meet their needs, reduce anxiety and to improve patients' QOL. Caregiver support could empower and prepare them for initiation of replacement therapy. This can potentially enhance their diseased family members' QOL and could also restrict the use of health care system resources. Given how difficult it is to conceptualize QOL, a holistic approach to patients and caregivers require QOL assessment in each stage of the kidney disease.
终末期肾病（ESKD）患者需要特定且持续的护理，这会影响护理人员的生活质量（QOL）。有必要确定影响肾患者家属身体和心理健康的基本问题和限制。
本叙述性文献回顾的主要目的是检查过去 10 年的文献，描述与 ESKD 患者照顾者 QOL 相关的因素，并确定照顾者报告的主观负担程度。
使用以下电子数据库进行文献检索：PubMed、Medscape、Science Direct、Scopus、PsychINFO 和其他科学来源。关键词包括“生活质量”、“照顾者”、“终末期肾病或肾脏疾病患者”、“负担”以及这些术语的组合。本研究仅纳入 2010 年 1 月至 2020 年 12 月的研究。
结果发现，照顾者承受着巨大的负担和困扰，这影响了他们的 QOL。患者的 QOL 与照顾者的 QOL 相关。每天护理的时间和长期替代治疗与巨大的负担有关。
需要更多地关注照顾者的 QOL，以满足他们的需求，减轻焦虑，并改善患者的 QOL。照顾者支持可以赋予他们权力，并为他们开始替代治疗做好准备。这有可能提高他们患病家庭成员的 QOL，并限制医疗保健系统资源的使用。鉴于 QOL 的概念如此困难，需要对患者和照顾者采取整体方法，在肾病的每个阶段都要对 QOL 进行评估。
