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比较三个欧洲国家长期护理机构中死亡居民的员工和家庭护理人员的症状评分,PACE 调查结果。

Comparing Symptom Ratings by Staff and Family Carers in Residents Dying in Long-Term Care Facilities in Three European Countries, Results From a PACE Survey.

机构信息

End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent University, Ghent University, Ghent, Belgium.

Department of Geriatrics, Ghent University and Ghent University Hospital, Ghent, Belgium.

出版信息

J Pain Symptom Manage. 2020 Aug;60(2):362-371.e2. doi: 10.1016/j.jpainsymman.2020.03.002. Epub 2020 Mar 10.

Abstract

CONTEXT

Symptom management is essential in the end-of-life care of long-term care facility residents.

OBJECTIVES

To study discrepancies and possible associated factors in staff and family carers' symptom assessment scores for residents in the last week of life.

METHODS

A postmortem survey in Belgium, The Netherlands, and Finland: staff and family carers completed the End-of-Life in Dementia-Comfort Assessment in Dying scale, rating 14 symptoms on a one-point to three-point scale. Higher scores reflect better comfort. We calculated mean paired differences in symptom, subscale, and total scores at a group level and inter-rater agreement and percentage of perfect agreement at a resident level.

RESULTS

Mean staff scores significantly reflected better comfort than those of family carers for the total End-of-Life in Dementia-Comfort Assessment in Dying (31.61 vs. 29.81; P < 0.001) and the physical distress (8.64 vs. 7.62; P < 0.001) and dying symptoms (8.95 vs. 8.25; P < 0.001) subscales. No significant differences were found for emotional distress and well-being. The largest discrepancies were found for gurgling, discomfort, restlessness, and choking for which staff answered not at all, whereas the family carer answered a lot, in respectively, 9.5%, 7.3%, 6.7%, and 6.1% of cases. Inter-rater agreement κ ranged from 0.106 to 0.204, the extent of perfect agreement from 40.8 for lack of serenity to 68.7% for crying.

CONCLUSION

There is a need for improved communication between staff and family and discussion about symptom burden in the dying phase in long-term care facilities.

摘要

背景

症状管理是长期护理机构临终关怀的重要组成部分。

目的

研究工作人员和家庭护理员在生命最后一周对居民症状评估得分的差异及其可能的相关因素。

方法

在比利时、荷兰和芬兰进行的一项事后调查:工作人员和家庭护理员使用《临终痴呆症舒适评估量表》对 14 种症状进行评分,采用 1 分至 3 分制。得分越高表示舒适度越好。我们计算了组内平均配对差异,以及症状、亚量表和总分的组内差异,并计算了居民水平的评分者间一致性和完全一致的百分比。

结果

工作人员的平均得分显著高于家庭护理员,表明对总体《临终痴呆症舒适评估量表》(31.61 分比 29.81 分;P<0.001)以及身体痛苦(8.64 分比 7.62 分;P<0.001)和临终症状(8.95 分比 8.25 分;P<0.001)亚量表的舒适度评估更好。在情感困扰和幸福感方面未发现显著差异。最大的差异出现在呼噜声、不适、躁动不安和窒息感,工作人员回答“一点也没有”,而家庭护理员回答“很多”,分别占 9.5%、7.3%、6.7%和 6.1%。评分者间一致性 κ 值范围为 0.106 至 0.204,完全一致的比例范围为 40.8%(缺乏宁静)至 68.7%(哭泣)。

结论

在长期护理机构中,工作人员和家庭之间需要加强沟通,并在临终阶段讨论症状负担问题。

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