Department of Oncology and Metabolism, University of Sheffield, Sheffield, UK.
Palliative Care Unit, University of Liverpool, Liverpool, UK.
Palliat Med. 2021 Sep;35(8):1480-1491. doi: 10.1177/02692163211019885. Epub 2021 May 31.
COVID-19 public health restrictions have affected end-of-life care experiences for dying patients and their families.
To explore bereaved relatives' experiences of quality of care and family support provided during the last days of life; to identify the impact of factors associated with perceived support.
A national, observational, open online survey was developed and disseminated via social media, public fora and professional networks (June-September 2020). Validated instruments and purposively designed questions assessed experiences. Analysis used descriptive statistics, logistic regression and thematic analysis of free-text responses.
Individuals (⩾18 years) who had experienced the death of a relative/friend (all care settings) within the United Kingdome during the COVID-19 pandemic.
Respondents ( = 278, mean 53.4 years) tended to be female ( = 216, 78%); over half were 'son/daughter' (174, 62.6%) to the deceased. Deceased individuals (mean 81.6 years) most frequently died in their 'usual place of care' ( = 192, 69.3%). Analysis established five conceptual themes affecting individualised care: (1) public health restrictions compounding the distress of 'not knowing'; (2) disparate views about support from doctors and nurses; (3) challenges in communication and level of preparedness for the death; (4) delivery of compassionate care; (5) emotional needs and potential impact on grief. Male respondents (OR 2.9, = 0.03) and those able to visit (OR 2.2, = 0.04) were independently associated with good perceptions of family support.
Despite public health restrictions, individualised care can be enabled by proactive, informative communication; recognising dying in a timely manner and facilitating the ability to be present before death.
COVID-19 公共卫生限制措施影响了临终患者及其家属的临终关怀体验。
探讨临终患者亲属在生命最后几天所接受的护理质量和家庭支持的体验；确定与感知支持相关的因素的影响。
通过社交媒体、公共论坛和专业网络（2020 年 6 月至 9 月）开发和传播一项全国性、观察性、开放的在线调查。使用验证工具和有针对性设计的问题评估体验。分析采用描述性统计、逻辑回归和自由文本回复的主题分析。
在 COVID-19 大流行期间，在英国经历过亲属/朋友死亡（所有护理环境）的个体（≥18 岁）。
受访者（ = 278，平均年龄 53.4 岁）倾向于为女性（ = 216，78%）；超过一半的人是死者的“儿子/女儿”（174，62.6%）。死者（平均年龄 81.6 岁）最常死于“通常的护理场所”（ = 192，69.3%）。分析确定了影响个体化护理的五个概念主题：（1）公共卫生限制加剧了“不知道”的痛苦；（2）医生和护士的支持意见不一致；（3）沟通和对死亡的准备方面的挑战；（4）提供富有同情心的护理；（5）情感需求和对悲伤的潜在影响。男性受访者（OR 2.9， = 0.03）和能够探视的受访者（OR 2.2， = 0.04）与对家庭支持的良好感知独立相关。
尽管存在公共卫生限制，但通过积极、信息丰富的沟通，可以实现个体化护理；及时认识到临终状态，并为死亡前的在场提供便利。
