Jeon Megan S, Agar Meera R, Koh Eng-Siew, Nowak Anna K, Hovey Elizabeth J, Dhillon Haryana M
South Western Sydney Clinical School, University of New South Wales, Sydney, NSW, Australia.
IMPACCT (Improving Palliative, Aged and Chronic Care through Clinical Research and Translation), Faculty of Health, University of Technology Sydney, Sydney, NSW, Australia.
Neurooncol Pract. 2020 Nov 29;8(2):179-189. doi: 10.1093/nop/npaa081. eCollection 2021 Apr.
Sleep is an important element in health-related quality of life of cancer patients and caregivers. This study aimed to explore the experience of sleep disturbance in people with malignant brain tumors (BT) and their family caregivers.
Participants were recruited from ambulatory neuro-oncology clinics. Semi-structured interviews were conducted with 24 patients (67% with high-grade gliomas) and 14 caregivers. Data were analyzed thematically using a framework synthesis.
We identified six themes relating to perceptions of the nature, impact, causal factors, and interventions for sleep disturbance, beliefs about sleep and impact, and personal coping strategies. Participants described their sleep disturbance in terms of insomnia symptoms; most commonly difficulties initiating and maintaining sleep. Participants had varied views on causal factors including the BT diagnosis and treatment and caregiver burden. However, excessive thinking and BT-related anxiety were evident in both patients and caregivers. The described impact on daytime functioning due to non-restful sleep and fatigue appeared to be significant and many participants needed daytime naps, although they understated the impact on individual functioning. Some participants were reluctant to seek help from clinicians for sleep disturbance due to previous experiences where sleep disturbance was overlooked, or because they held negative views toward pharmacological interventions. Participants reported various coping strategies, ranging from relaxation-promoting techniques to behaviors to distract thinking at night that may instead disturb sleep.
Psychological factors contribute to sleep disturbance in patients with BT and caregivers. This population may benefit from information about sleep disturbance and interventions targeting anxiety.
睡眠是癌症患者及其照料者健康相关生活质量的重要因素。本研究旨在探讨恶性脑肿瘤（BT）患者及其家庭照料者睡眠障碍的经历。
参与者从门诊神经肿瘤诊所招募。对24名患者（67%为高级别胶质瘤患者）和14名照料者进行了半结构式访谈。使用框架综合法对数据进行主题分析。
我们确定了六个主题，涉及对睡眠障碍的性质、影响、因果因素及干预措施的认知、对睡眠及其影响的信念以及个人应对策略。参与者用失眠症状来描述他们的睡眠障碍；最常见的是入睡困难和维持睡眠困难。参与者对因果因素有不同看法，包括BT诊断和治疗以及照料者负担。然而，过度思考和与BT相关的焦虑在患者和照料者中都很明显。由于睡眠不安和疲劳对白天功能的影响似乎很大，许多参与者需要白天小睡，尽管他们低估了对个人功能的影响。由于之前睡眠障碍被忽视的经历，或者因为他们对药物干预持负面看法，一些参与者不愿向临床医生寻求睡眠障碍方面的帮助。参与者报告了各种应对策略，从促进放松的技巧到夜间分散思维的行为，而这些行为可能反而会干扰睡眠。
心理因素导致BT患者及其照料者出现睡眠障碍。这一人群可能会从有关睡眠障碍的信息以及针对焦虑的干预措施中受益。
