患者和护理人员对腹膜透析倦怠的看法。

Justin Oveyssi, Karine E Manera, Amanda Baumgart, Yeoungjee Cho, Derek Forfang, Anjali Saxena, Jonathan C Craig, Samuel Ks Fung, David Harris, David W Johnson, Peter G Kerr, Achilles Lee, Lorena Ruiz, Matthew Tong, Angela Yee-Moon Wang, Terence Yip, Allison Tong, Jenny I Shen
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引用次数: 10

摘要

背景:与中心血液透析(HD)相比,腹膜透析(PD)可以为患者提供更多的自主权和灵活性。然而,倦怠——定义为精神、情感或身体上的疲惫,导致停止PD的想法——与转移到HD的风险增加有关。我们的目的是描述PD患者及其护理人员的倦怠观点。方法:在本焦点小组研究中,81名患者和45名护理人员参加了来自澳大利亚、香港和美国9个透析单位的14个焦点小组。转录本按主题进行分析。结果:我们确定了两个主题。由于患者和护理人员对日常方案感到不堪重负,认为他们的生活即将停止,忍受PD方案以生存,并且不得不承担负担和对PD期望的不确定性,因此遭受无情的责任导致了倦怠。适应和建立抗倦怠的韧性包括建立一个新的常态,从家庭中汲取灵感和支持,依靠信仰和希望来获得动力,并在其他活动中找到意义。结论:对于患有帕金森病的患者及其护理人员来说,由于将帕金森病视为一种无情的、孤立的责任,他们别无选择,只能忍受,即使它阻碍了他们从事生活中的其他活动,也会加剧倦怠。更多地强调制定适应和建立复原力的策略可以预防或最大限度地减少倦怠。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Patient and caregiver perspectives on burnout in peritoneal dialysis.

Background: Peritoneal dialysis (PD) can offer patients more autonomy and flexibility compared with in-center hemodialysis (HD). However, burnout - defined as mental, emotional, or physical exhaustion that leads to thoughts of discontinuing PD - is associated with an increased risk of transfer to HD. We aimed to describe the perspectives of burnout among patients on PD and their caregivers.

Methods: In this focus group study, 81 patients and 45 caregivers participated in 14 focus groups from 9 dialysis units in Australia, Hong Kong, and the United States. Transcripts were analyzed thematically.

Results: We identified two themes. Suffering an unrelenting responsibility contributed to burnout, as patients and caregivers felt overwhelmed by the daily regimen, perceived their life to be coming to a halt, tolerated the PD regimen for survival, and had to bear the burden and uncertainty of what to expect from PD alone. Adapting and building resilience against burnout encompassed establishing a new normal, drawing inspiration and support from family, relying on faith and hope for motivation, and finding meaning in other activities.

Conclusions: For patients on PD and their caregivers, burnout was intensified by perceiving PD as an unrelenting, isolating responsibility that they had no choice but to endure, even if it held them back from doing other activities in life. More emphasis on developing strategies to adapt and build resilience could prevent or minimize burnout.

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