Department of Medical Humanities, School of Humanities, Southeast University, Nanjing, China.
Department of Propaganda and United Fronts, The First Affiliated Hospital of Nanjing Medical University, Nanjing, China.
J Adv Nurs. 2023 Jul;79(7):2622-2631. doi: 10.1111/jan.15595. Epub 2023 Mar 9.
The aim of the study was to explore how families' perceptions of dying patients' prognosis awareness influence families' grief.
A cross-sectional design was adopted.
Data were collected from a survey of family caregivers of deceased patients through a tertiary hospital in Mainland China between October 2018 and April 2021. One question asked about families' perceptions of patients' awareness of their prognosis, and the Chinese Grief Reaction Assessment Form was used to measure grief. A multiple linear regression with control variables was run to test the link. Missing data were handled with multiple imputation.
A total of 181 participants were involved in the analyses. After whether the patient received professional end-of-life care in the last days, the place of death and several basic information variables were controlled, families' grief was more intense when they were sure that patients were unaware of the terminal prognosis compared to when they believed that patients were aware or not sure about the patient's awareness. The latter two groups did not differ significantly in grief intensity.
For Chinese family caregivers in the present study, terminal patients' awareness of their prognosis is more beneficial than harmful to their bereavement adaptation. This raises empirical concerns over the assumption that truth is harmful and the nondisclosure pattern on such a basis.
The findings extend knowledge on the outcomes of information disclosure from the perspective of bereaved family caregivers. Meanwhile, it informs services for the dying and the bereaved: When making decisions about prognosis disclosure to terminally ill patients, potential impacts on not only patients but also families need to be fully considered. For families who are sure that the patient was never aware of the prognosis, additional support ought to be provided to address their intense grief reactions.
Several professional caregivers helped revise the questionnaire.
本研究旨在探讨家庭对临终患者预后意识的看法如何影响家庭的悲伤程度。
采用横断面设计。
数据来自中国内地一家三级医院对已故患者家属的调查,于 2018 年 10 月至 2021 年 4 月期间收集。其中一个问题是询问家庭对患者对自己预后的意识,使用《中国悲伤反应评估表》来衡量悲伤程度。采用多元线性回归分析控制了患者是否在最后几天接受专业临终关怀、死亡地点和一些基本信息变量,以检验两者之间的关联。采用多重插补处理缺失数据。
共有 181 名参与者参与了分析。在控制了患者是否在最后几天接受专业临终关怀、死亡地点和几个基本信息变量后,与家庭认为患者不知道终末预后相比,当家庭确信患者不知道终末预后时,家庭的悲伤程度更强烈。而认为患者知道或不确定患者是否知道预后的后两组在悲伤强度上没有显著差异。
对于本研究中的中国家庭照顾者,临终患者对自己预后的意识对他们的丧亲适应更有益而不是有害。这对基于这种假设的信息披露有害的观点提出了经验上的质疑,即真相有害且基于这种假设的不披露模式。
该研究从临终照顾者家属的角度扩展了关于信息披露结果的知识。同时,它为临终患者和丧亲者服务提供了信息:在决定是否向绝症患者披露预后时,不仅需要充分考虑对患者的潜在影响,还需要充分考虑对家庭的潜在影响。对于那些确定患者从未意识到预后的家庭,应提供额外的支持,以解决他们强烈的悲伤反应。
几名专业护理人员帮助修改了问卷。