Parent Perspectives on Pain Management in Preschool-Age Children With Sickle Cell Disease

Pain episodes occur for many preschoolers with sickle cell disease (SCD), but little is known about parent perceptions of managing pain episodes in young children. We surveyed parents of young children with SCD who had managed pain episodes in the past year to assess their management and satisfaction with their strategies, challenges of pain management, and interest in additional education. Parents were recruited from health maintenance visits at a SCD specialty clinic. Forty-two of 51 parents (82%) of 2- to-6-year-olds reported managing pain over the past year. Parents who had managed pain primarily reported using medications. These parents reported at least moderate satisfaction with current management strategies and resources. At least one-third of parents found each facet of pain management queried as at least somewhat challenging. Identifying when their child was in pain, encouraging functional activities, and managing irritable behavior were reported as most challenging. Parents of young children with SCD reported interest in additional pain management education, which could promote better parent and child coping skills.