Osborne Jennel C, Odlum Michelle, Sedrak Aziza
Long Island University, Brooklyn, New York.
The George Washington University, Washington University, DC.
J Clin Sleep Med. 2024 May 1;20(5):777-782. doi: 10.5664/jcsm.11004.
The coronavirus disease pandemic has highlighted disparities in health care. Parents assist in sickle cell disease management in children. Understanding sleep in parents of children who are diagnosed with sickle cell disease is an important facet of disease management. Our objectives were to identify sleep characteristics of parents of children with sickle cell disease age 18 years or younger during the coronavirus disease pandemic, to investigate measures used by parents to achieve restful sleep, and to discuss how sleep may be improved in parents of children diagnosed with sickle cell disease.
This study conducted 14 face-to-face semistructured interviews with parents of children diagnosed with sickle cell disease. A majority of the interviews (93%) were conducted at a hematology clinic. Qualitative thematic analysis was used to analyze data.
All parents reported that their child experienced pain because of sickle cell disease. Most parents (86.7%) reported that their child was diagnosed with sickle cell anemia. Four themes were identified: difficulty obtaining restful sleep during their child's sickle cell crisis, sleep during the coronavirus disease pandemic, factors affecting sleep, and effects of sleep disturbance and deprivation on parental performance.
This research has highlighted some of the difficulties experienced by parents of children who are diagnosed with sickle cell disease and allows for additional insight into the sleep experiences of parents as they attempt to manage their child's disease.
Osborne JC, Odlum M, Sedrak A. Sleep experiences of parents of children 18 years or younger with sickle cell disease during the COVID-19 pandemic: a qualitative study. . 2024;20(5):777-782.
冠状病毒病大流行凸显了医疗保健方面的差异。父母协助管理儿童镰状细胞病。了解镰状细胞病患儿父母的睡眠情况是疾病管理的一个重要方面。我们的目标是确定18岁及以下镰状细胞病患儿父母在冠状病毒病大流行期间的睡眠特征，调查父母为获得安稳睡眠所采取的措施，并讨论如何改善镰状细胞病患儿父母的睡眠。
本研究对镰状细胞病患儿的父母进行了14次面对面的半结构化访谈。大多数访谈（93%）在血液科诊所进行。采用定性主题分析法分析数据。
所有父母都报告说他们的孩子因镰状细胞病而疼痛。大多数父母（86.7%）报告说他们的孩子被诊断为镰状细胞贫血。确定了四个主题：孩子镰状细胞病危机期间难以获得安稳睡眠、冠状病毒病大流行期间的睡眠、影响睡眠的因素以及睡眠障碍和剥夺对父母表现的影响。
本研究突出了镰状细胞病患儿父母所经历的一些困难，并有助于进一步了解父母在试图管理孩子疾病时的睡眠体验。
奥斯本JC、奥德姆M、塞德拉克A。COVID-19大流行期间18岁及以下镰状细胞病患儿父母的睡眠体验：一项定性研究。《儿科血液学与肿瘤学》。2024；20（5）：777 - 782。
