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日本丧亲家属对临终关怀病房的信息提供是否满意?

Are Bereaved Family Members Satisfied With Information Provision About Palliative Care Units in Japan?

作者信息

Sanjo Makiko, Morita Tatsuya, Miyashita Mitsunori, Sato Kazuki, Kamibeppu Kiyoko, Tsuneto Satoru, Shima Yasuo

机构信息

1 Cancer/Advanced Adult Nursing, Department of Nursing, Graduate School of Medicine, Yokohama City University, Kanagawa, Tokyo, Japan.

2 Division of Health Science and Nursing, Department of Family Nursing, Division of Health Science and Nursing, Graduate School of Medicine, The University of Tokyo, Tokyo, Japan.

出版信息

Am J Hosp Palliat Care. 2018 Feb;35(2):275-283. doi: 10.1177/1049909117729805. Epub 2017 Sep 6.

Abstract

This study clarified the evaluation of the information about palliative care units (PCUs) from the oncologists by the bereaved family members of Japanese patients with cancer at the time of their first referral. A multicenter questionnaire survey examining the amount, timing, and adequacy of information received about PCUs was conducted. Half of the respondents (N = 465, mean age = 60 years) were spouses. Findings showed that 55% of the respondents thought the amount of information was inadequate and 33% thought the timing of the information about PCU from the oncologist was inadequate. Greater perceived inadequacy of the amount of information was significantly associated with (1) obtaining information from other patients and/or family member who had no experience with PCUs and (2) not acquiring information about the availability of medical staff and medical treatments at PCUs. Greater perceived inadequacy of the timing of the information was significantly associated with acts by the oncologist and/or nurses, such as providing insufficient information or saying there is nothing more that can be done any longer; however, this was not significantly associated with the actual timing of the oncologists' information. Medical staff should understand what information families desire and provide enough detail for patients to imagine accurately what time spent in a PCU would be like. Moreover, practitioners should strive to improve methods of communication and engagement after the information provision, rather than prioritizing the timing of the information.

摘要

本研究阐明了日本癌症患者首次转诊时,其遗属对肿瘤学家提供的姑息治疗病房(PCUs)信息的评价。开展了一项多中心问卷调查,调查关于PCUs所接收信息的数量、时机和充分性。一半的受访者(N = 465,平均年龄 = 60岁)为配偶。结果显示,55%的受访者认为信息数量不足,33%的受访者认为肿瘤学家提供PCU信息的时机不当。更大程度地感知到信息数量不足与以下因素显著相关:(1)从没有PCU经验的其他患者和/或家庭成员处获取信息;(2)未获取关于PCUs医护人员可及性和医疗治疗的信息。更大程度地感知到信息时机不当与肿瘤学家和/或护士的行为显著相关,比如提供的信息不足或表示再也无能为力了;然而,这与肿瘤学家提供信息的实际时机并无显著关联。医护人员应了解家属想要哪些信息,并提供足够细节,以便患者能准确想象在PCU的时光会是什么样。此外,从业者应努力改进提供信息后的沟通和交流方式,而不是将信息的时机作为优先考虑因素。

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