PDF(Pubmed)
Abstract：
OBJECTIVE: 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.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.
BACKGROUND: 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. J Clin Sleep Med. 2024;20(5):777-782.
METHODS: 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.
RESULTS: 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.
CONCLUSIONS: 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.
BACKGROUND: 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. J Clin Sleep Med. 2024;20(5):777-782.
摘要：
目标：COVID-19大流行凸显了医疗保健方面的差距。父母协助儿童镰状细胞病管理。了解被诊断患有镰状细胞病的儿童的父母的睡眠是疾病管理的重要方面。我们的目标是确定COVID-19大流行期间18岁或更小的镰状细胞病儿童父母的睡眠特征，调查父母使用的措施来实现宁静的睡眠，并讨论如何改善被诊断为镰状细胞病的儿童的父母的睡眠。
方法：这项研究对被诊断为镰状细胞病的儿童的父母进行了14次面对面的半结构化访谈。大多数访谈（93％）是在血液学诊所进行的。采用定性主题分析进行数据分析。
结果：所有父母都报告说他们的孩子因为镰状细胞病而感到疼痛。大多数父母（86.7％）报告他们的孩子被诊断为HbSS。确定了四个主题：在孩子的镰状细胞危机期间难以获得宁静的睡眠，在COVID-19大流行期间睡觉，影响睡眠的因素,以及睡眠障碍和剥夺对父母表现的影响。
结论：这项研究强调了被诊断患有镰状细胞病的儿童的父母所经历的一些困难，并允许更深入地了解父母在试图控制儿童疾病时的睡眠经历。
方法：这项研究对被诊断为镰状细胞病的儿童的父母进行了14次面对面的半结构化访谈。大多数访谈（93％）是在血液学诊所进行的。采用定性主题分析进行数据分析。
结果：所有父母都报告说他们的孩子因为镰状细胞病而感到疼痛。大多数父母（86.7％）报告他们的孩子被诊断为HbSS。确定了四个主题：在孩子的镰状细胞危机期间难以获得宁静的睡眠，在COVID-19大流行期间睡觉，影响睡眠的因素,以及睡眠障碍和剥夺对父母表现的影响。
结论：这项研究强调了被诊断患有镰状细胞病的儿童的父母所经历的一些困难，并允许更深入地了解父母在试图控制儿童疾病时的睡眠经历。
