重症脑卒中患者家属代理决策困境的质性研究

doi:10.3761/j.issn.0254-1769.2024.14.012

摘要/Abstract

摘要：

目的探究重症脑卒中患者家属在代理决策中面临的困境，为制订决策支持策略提供参考依据。方法 2023年4月—12月采用现象学研究方法，对上海市静安区某三级甲等医院神经内科重症监护室的16例重症脑卒中患者家属代理决策者进行半结构化深度访谈，运用Braun主题分析法进行资料分析。结果提炼出4个主题和10个亚主题。①负性情绪困境：紧迫决策致使焦虑、恐惧；卒中轨迹未知导致的不确定感。②支持环境困境：信息支持匮乏致使决策延迟、家庭支持缺失加重决策压力、经济支持不足增添决策负担。③利弊权衡困境：风险-收益的困难权衡、现实-伦理的艰难抉择、生命-尊严的矛盾冲突。④偏好处理困境：依从患者偏好存在客观困难、未知患者偏好造成决策阻碍。结论重症脑卒中患者家属在为患者进行临床决策时面临多重决策困境。医护人员应提供多途径情感指导及全方位辅助支持，以减轻脑卒中家属代理决策困境，同时需对家属代理决策者加强生死教育，并推广预立医疗照护计划，以减轻其决策压力。

关键词: 重症脑卒中, 家属, 代理决策, 决策困境, 护理, 质性研究

Abstract:

Objective To explore the dilemmas faced by surrogate decision-makers of severe stroke patients in treatment decision-making，and to provide a basis for developing decision support strategies. Methods From April to December 2023，through phenomenological qualitative research with 16 surrogate decision-makers with severe stroke patients from ICU of the department of neurology in a tertiary hospital in Jing’an District, Shanghai. semi-structured in-depth interviews were used to examine the perceptions of decision-making on surrogate. Data were analyzed via Braun’s style of thematic analysis. Results 4 themes and 10 sub-themes were identified. Theme 1：negative emotional dilemmas（urgent decision-making leads to anxiety，fear，and unknown stroke trajectory increases the sense of uncertainty）. Theme 2：supportive environment dilemmas（lack of information support delays decision-making； lack of family support increases decision-making stress； insufficient economic support increases the burden of decision-making）. Theme 3：the dilemma of weighing the pros and cons（difficult trade-offs between risk and reward，tough decisions between reality and ethics，conflicting choices of life and dignity）. Theme 4：preference management dilemmas（practical difficulties in adhering to patient preferences，impediments to decision-making due to unknown patient preferences）. Conclusion Surrogate decision-makers of severe stroke patients face multiple decision-making dilemmas. Healthcare professionals should provide emotional support in multiple ways and comprehensive support to reduce the decision-making dilemmas experienced by surrogate decision-makers，as well as implement death education for surrogate decision-makers and promote advance care planning to reduce their decision-making stress.

Key words: Severe Stroke Patients, Family, Surrogate Decision-Making, Dilemmas in Decision-Making, Nursing Care, Qualitative Research

郭子宁, 凌克玉, 陈述凡, 李海涵, 姚亭, 曾司甯, 徐玲, 朱晓萍. 重症脑卒中患者家属代理决策困境的质性研究[J]. 中华护理杂志, 2024, 59(14): 1746-1751.

GUO Zining, LING Keyu, CHEN Shufan, LI Haihan, YAO Ting, ZENG Sining, XU Ling, ZHU Xiaoping. Dilemmas in decision-making：a qualitative study of family surrogate decision-makers of severe stroke patients[J]. Chinese Journal of Nursing, 2024, 59(14): 1746-1751.

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