Parent perspectives on pain management, coping, and family functioning in pediatric sickle cell disease

Pediatric sickle cell disease is a chronic illness for which recurrent pain is a ubiquitous experience. This study used quantitative and qualitative methods to examine relationships between patient and family coping and health care utilization in children with sickle cell disease and to assess parents' recommendations for ensuring patient and family-centered care. Participants were 53 parents of children aged 7 to 13 with sickle cell disease across three large urban children's hospitals. Data showed that positive patient coping was related to positive family functioning and lower health utilization. In addition, parents report the need for comprehensive health care approaches that meet the physical and psychologic needs of patients and families.