Sleep experiences of parents of children 18 years or younger with sickle cell disease during the COVID-19 pandemic: a qualitative study.

STUDY OBJECTIVES:The COVID-19 Pandemic has highlighted disparities in healthcare. 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 aged 18 years or younger during the COVID-19 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 semi-structured interviews with parents of children diagnosed with sickle cell disease. A majority of the interviews (93%) was 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 HbSS. Four themes were identified: difficulty obtaining restful sleep during their child's sickle cell crisis, sleep during the COVID-19 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.