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中国晚期癌症患者家庭的临终沟通体验:一项定性研究。

End-of-life communication experiences within families of people with advanced cancer in China: A qualitative study.

机构信息

School of Nursing, Capital Medical University, 10 Xitoutiao, Youanmen, Fengtai District, Beijing 100069, China.

Hospice Ward, Beijing Haidian Hospital, Beijing 100080, China.

出版信息

Int J Nurs Stud. 2022 Aug;132:104261. doi: 10.1016/j.ijnurstu.2022.104261. Epub 2022 Apr 22.

Abstract

BACKGROUND

Effective communication between people with advanced cancer and their family members on end-of-life issues has a profound impact on meeting needs and improving quality of life of both sides. Several studies have shown that patient-family end-of-life communication is not always adequate and optimal. Little is known about the experiences of end-of-life communication within families of people with advanced cancer in China.

OBJECTIVES

The aim of this study was to explore the experiences of end-of-life communication between people with advanced cancer and their family members in China and the factors influencing their communication.

DESIGN

A qualitative descriptive study using semi-structured interviews was conducted.

SETTINGS

This study took place at three tertiary hospitals in Beijing, China from July 2018 to October 2019.

PARTICIPANTS

Purposive sampling was employed to select participants. Eleven people with advanced cancer and 14 family members were finally interviewed.

METHODS

Audio-recordings were transcribed verbatim and entered into qualitative data analysis software. Qualitative data were analyzed using a content analysis approach.

RESULTS

Five themes and associated categories were identified: (1) silence without intention; (2) silence with intention; (3) silence-breaking; (4) openness without restraint; and (5) the influencing factors of end-of-life communication. These four states of end-of-life communication have different essential characteristics and change under the influence of the awareness of disease diagnosis, awareness and acceptance of the incurability of disease, and fear of impending death.

CONCLUSIONS

Affected by the willingness and ability to communicate about end-of-life issues, people with advanced cancer and their family members present four communication states, namely silence without intention, silence with intention, silence-breaking, and openness without restraint. The study provides an insight into end-of-life communication experiences within families where different communication states are interconnected. The findings enable professionals to evaluate the communication and its influencing factors, so as to provide feasible and effective end-of-life communication support.

REGISTRATION

Not registered.

摘要

背景

晚期癌症患者及其家属之间就临终问题进行有效的沟通,对满足双方的需求和提高生活质量有着深远的影响。有几项研究表明,患者与家属之间的临终沟通并不总是充分和最佳的。在中国,关于晚期癌症患者家庭临终沟通的经验,知之甚少。

目的

本研究旨在探讨中国晚期癌症患者及其家属的临终沟通体验,以及影响沟通的因素。

设计

采用半结构式访谈的定性描述研究。

地点

本研究于 2018 年 7 月至 2019 年 10 月在中国北京的三家三级医院进行。

参与者

采用目的抽样法选择参与者。最终共采访了 11 名晚期癌症患者和 14 名家属。

方法

对音频记录进行逐字转录,并输入定性数据分析软件。采用内容分析法对定性资料进行分析。

结果

确定了五个主题和相关类别:(1)无意的沉默;(2)有意的沉默;(3)打破沉默;(4)无拘束的开放;以及(5)临终沟通的影响因素。这四种临终沟通状态具有不同的本质特征,并在疾病诊断意识、疾病不可治愈意识和对即将死亡的恐惧的影响下发生变化。

结论

受临终问题沟通意愿和能力的影响,晚期癌症患者及其家属呈现出四种沟通状态,即无意的沉默、有意的沉默、打破沉默和无拘束的开放。本研究深入了解了不同沟通状态相互关联的家庭内临终沟通体验。研究结果使专业人员能够评估沟通及其影响因素,从而提供可行和有效的临终沟通支持。

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