Decision Making About Gastrostomy and Noninvasive Ventilation in Amyotrophic Lateral Sclerosis
Decision Making About Gastrostomy and Noninvasive Ventilation in Amyotrophic Lateral Sclerosis
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DOI：
10.1177/1049732315583661
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发表时间：
2016-08-01
影响因子：
3.2
通讯作者：
Goldstein, Laura H.
中科院分区：
文献类型：
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作者：
Martin, Naomi H.;Lawrence, Vanessa;Goldstein, Laura H.
我们从支持肌萎缩侧索硬化症(ALS)的卫生保健专业人员(HCP)的角度，用专题分析的方法研究了影响肌萎缩侧索硬化症(ALS)患者胃造口术和无创呼吸机(NIV)决策的因素。我们对19名由ALS患者提名的决定接受或拒绝NIV或胃造口术的HPC进行了20次深入访谈。我们发现，影响决策的主要主题是以患者为中心，与照顾者相关或与HCP自己的信念、观点和行动有关。初级保健医生认为病人应该而且正在控制决策，尽管照顾者和初级保健医生发挥了作用。患者对生活质量的评估，延长生命的愿望，以及患者和照顾者对疾病及其进展的接受程度是HCP确定的最重要的因素。初级保健医生应该意识到多专业讨论的重要性，以及可能需要与患者和护理人员讨论的潜在影响(如上文所述)。
We used thematic analysis to investigate factors affecting decision making about gastrostomy and noninvasive ventilation (NIV) by people with Amyotrophic Lateral Sclerosis (ALS) from the viewpoint of the health care professionals (HCPs) supporting them. We conducted 20 in-depth interviews with 19 HCPs nominated by people with ALS who had made a decision to accept or decline NIV or gastrostomy. We found the main themes influencing decision making were patient-centric, caregiver-related or related to HCPs' own beliefs, perspectives, and actions. HCPs felt patients should be, and were, in control of decision making, although caregivers and HCPs played a role. The patient's evaluation of quality of life, the desirability of prolonging life, and acceptance of the disease and its progression by both patient and caregiver were the most important factors identified by HCPs. HCPs should be aware of the importance of multiprofessional discussions, and the potential influences (identified above) that might require discussion with patients and caregivers.