Division of Neuro-Epidemiology, Department of Neurosurgery, Duke University School of Medicine, Durham, North Carolina, USA.
Alex's Lemonade Stand Foundation, Bala Cynwyd, Pennsylvania, USA.
Pediatr Blood Cancer. 2021 Apr;68(4):e28943. doi: 10.1002/pbc.28943. Epub 2021 Feb 9.
We sought to assess the impact of disruptions due to coronavirus disease 2019 (COVID-19) on caregivers of childhood cancer survivors.
A 13-question survey containing multiple-choice, Likert-type, and free-text questions on experiences, behaviors, and attitudes during the COVID-19 outbreak was sent to childhood cancer caregivers and completed between April 13 and May 17, 2020. Ordered logistic regression was used to investigate relationships between demographics, COVID-related experiences, and caregiver well-being.
Caregivers from 321 unique families completed the survey, including 175 with children under active surveillance/follow-up care and 146 with children no longer receiving oncology care. Overall, caregivers expressed exceptional resiliency, highlighting commonalities between caring for a child with cancer and adopting COVID-19 prophylactic measures. However, respondents reported delayed/canceled appointments (50%) and delayed/canceled imaging (19%). Eleven percent of caregivers reported struggling to pay for basic needs, which was associated with greater disruption to daily life, greater feelings of anxiety, poorer sleep, and less access to social support (p < .05). Caregivers who were self-isolating reported greater feelings of anxiety and poorer sleep (p < .05). Respondents who expressed confidence in the government response to COVID-19 reported less disruption to their daily life, decreased feelings of depression and anxiety, better sleep, and greater hopefulness (p < .001) CONCLUSIONS: Caregivers are experiencing changes to medical care, financial disruptions, and emotional distress due to COVID-19. To better serve caregivers and medically at-risk children, clinicians must evaluate financial toxicity and feelings of isolation in families affected by childhood cancer, and work to provide reliable information on how COVID-19 may differentially impact their children.
我们旨在评估 2019 年冠状病毒病（COVID-19）大流行造成的中断对儿童癌症幸存者照顾者的影响。
2020 年 4 月 13 日至 5 月 17 日，向儿童癌症照顾者发送了一份包含 13 个问题的调查，其中包含多项选择、李克特量表和关于 COVID-19 爆发期间经历、行为和态度的自由文本问题。有序逻辑回归用于研究人口统计学、与 COVID 相关的经历和照顾者健康之间的关系。
来自 321 个独特家庭的照顾者完成了调查，其中 175 名儿童处于主动监测/随访护理，146 名儿童不再接受肿瘤学护理。总体而言，照顾者表现出非凡的弹性，强调了照顾癌症儿童和采取 COVID-19 预防措施之间的共同之处。然而，受访者报告预约（50%）和影像学检查（19%）延迟/取消。11%的照顾者报告难以支付基本需求，这与日常生活受到更大干扰、焦虑感更强、睡眠质量更差以及获得社会支持的机会更少有关（p<0.05）。自我隔离的照顾者报告焦虑感更强、睡眠质量更差（p<0.05）。对政府应对 COVID-19 有信心的受访者报告日常生活受到的干扰较小、抑郁和焦虑感减轻、睡眠质量更好、希望感更强（p<0.001）。
由于 COVID-19，照顾者正在经历医疗保健的变化、经济中断和情绪困扰。为了更好地为照顾者和患有医学疾病的儿童服务，临床医生必须评估受儿童癌症影响的家庭中的财务毒性和孤立感，并努力提供有关 COVID-19 如何对其子女产生不同影响的可靠信息。
