Department of Renal Medicine, Aarhus University Hospital, Aarhus, Denmark.
Department of Clinical Medicine, Aarhus University, Aarhus, Denmark.
Nurs Open. 2023 Aug;10(8):5139-5148. doi: 10.1002/nop2.1749. Epub 2023 Apr 18.
To explore and gain knowledge of the experiences and needs among patients with amyotrophic lateral sclerosis (ALS) of their decision-making processes whether to choose invasive home mechanical ventilation or not.
A qualitative study.
A phenomenological-hermeneutic approach influenced by Ricoeur's interpretation theory was used. Seven patients with ALS were interviewed. The Consolidated Criteria for Reporting Qualitative Research checklist was used for reporting.
Three themes were evident in patients' accounts of the decision-making process: (1) being taken care of directly after receiving the diagnosis, (2) living in uncertainty about what the future would bring and (3) doubt causing patients with ALS to change their minds. Patients with ALS were burdened with everyday life challenging decision-making processes about future treatment and doubt caused patients to change their minds about their future treatment. It is necessary to support patients in their decision-making processes using shared decision-making.
No Patient or Public Contribution.
探索并了解肌萎缩侧索硬化症（ALS）患者在是否选择侵入性家庭机械通气方面的决策过程中的体验和需求。
定性研究。
采用受 Ricoeur 解释理论影响的现象学-解释学方法。对 7 名 ALS 患者进行了访谈。采用《定性研究报告的统一标准》检查表进行报告。
患者对决策过程的描述中出现了三个主题：（1）在确诊后直接得到照顾，（2）对未来会带来什么感到不确定，（3）怀疑导致 ALS 患者改变主意。ALS 患者的日常生活受到未来治疗决策过程的挑战，怀疑导致患者改变对未来治疗的想法。有必要使用共同决策来支持患者的决策过程。
无。
