Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia.
Department of Community Paediatrics, Liverpool Community Health Centre, Liverpool, NSW, Australia.
J Sleep Res. 2021 Aug;30(4):e13221. doi: 10.1111/jsr.13221. Epub 2020 Oct 25.
Sleep disturbances are common among patients receiving dialysis and are associated with an increased risk of mortality and morbidity, and impaired quality of life. Despite being highly prioritised by patients, sleep problems remain under-diagnosed and inadequately managed. The aim of the present study was to describe the perspectives of patients receiving dialysis and their caregivers on sleep. We extracted qualitative data on sleep from 26 focus groups, two international Delphi surveys, and two consensus workshops involving 644 patients and caregivers from 86 countries as part of the Standardised Outcomes in Nephrology-Haemodialysis and -Peritoneal Dialysis (SONG-HD/SONG-PD) initiatives. The responses were from patients aged ≥18 years receiving haemodialysis or peritoneal dialysis, and their caregivers. We analysed the data using thematic analysis with five themes identified: constraining daily living (with subthemes of: battling intrusive tiredness, exacerbating debilitating conditions, broken and incapacitated); roadblocks in relationships (unable to meet family needs, antipathy due to misunderstanding, wreaking emotional havoc); burden on caregivers (stress on support persons, remaining alert to help); losing enjoyment (limiting social contact, disempowerment in life); and undermining mental resilience (aggravating low mood, diminishing coping skills, reducing functional ability). Sleep disturbances are exhausting for patients on dialysis and pervade all aspects of their lives including the ability to do daily tasks, and maintaining relationships, mental and emotional well-being. Better assessment and management of sleep problems in dialysis is needed, which may lead to improvements in overall health and quality of life.
睡眠障碍在接受透析治疗的患者中很常见，与死亡率和发病率增加以及生活质量受损有关。尽管患者对此高度重视，但睡眠问题的诊断仍然不足，且管理不善。本研究旨在描述接受透析治疗的患者及其护理人员对睡眠的看法。我们从 26 个焦点小组、两项国际 Delphi 调查以及两项共识研讨会中提取了关于睡眠的定性数据，这些数据来自 86 个国家的 644 名患者及其护理人员，他们正在参与肾脏病预后质量倡议-血液透析和腹膜透析（SONG-HD/SONG-PD）计划。受访者为年龄≥18 岁、正在接受血液透析或腹膜透析治疗的患者及其护理人员。我们使用主题分析对数据进行了分析，确定了五个主题：日常生活受限（包括：与侵入性疲劳作斗争、使衰弱病情恶化、身体破碎和丧失能力）；人际关系障碍（无法满足家庭需求、因误解产生反感、造成情绪混乱）；护理人员负担（对支持人员的压力、时刻保持警惕以提供帮助）；失去享受（限制社交接触、生活中失去力量）；以及破坏心理韧性（加重情绪低落、减少应对技能、降低功能能力）。睡眠障碍让透析患者感到疲惫不堪，影响他们生活的方方面面，包括完成日常任务、维持人际关系、身心健康。需要更好地评估和管理透析患者的睡眠问题，这可能会改善整体健康和生活质量。
