A situational analysis of problematic situations was conducted for 37 caregivers of children with sickle cell disease (SCD) who ranged in age from 5 to 13 years. Participants responded to a semistructured interview related to caring for a child with SCD. The interview included the domains of medication adherence, nutrition, minimizing and coping with pain episodes, social problems, academic difficulties, and children's expression of negative feelings related to having SCD. Caregivers described a total of 356 problems. Almost all caregivers reported experiencing problems with their children's nutrition (n = 35), minimizing pain episodes (n = 34), and their children expressing feelings about having SCD (n = 33). Moderately challenging and emotionally upsetting problems were reported for coping with pain episodes. The total number of problems was significantly higher for boys than for girls. Nutrition issues were more frequently reported for younger children. Findings have salient clinical implications for the care of children with SCD.
Division of Behavioral Pediatrics and Psychology, Department of Pediatrics, Rainbow Babies and Children's Hospital, Case Western Reserve School of Medicine, Cleveland, Ohio (IEVERS-LANDIS)
Department of Pediatrics, Medical University of South Carolina, Charleston, South Carolina (BROWN)
Division of Behavioral Pediatrics and Psychology, Department of Pediatrics, Rainbow Babies and Children's Hospital, Case Western Reserve School of Medicine, Cleveland, Ohio (DROTAR)
Cobb County Public Schools, Atlanta, Georgia (BUNKE)
Department of Education Administration, Research, and Technology, University of North Carolina-Charlotte, North Carolina (LAMBERT)
Department of Psychology, University of Massachusetts-Dartmouth, Massachusetts (WALKER)
Address for reprints: Carolyn E. Ievers-Landis, Ph.D., Division of Behavioral Pediatrics and Psychology, Rainbow Babies and Children's Hospital, 11100 Euclid Avenue, Cleveland, OH 44106-6038.
Acknowledgments. This research was supported in full by the National Institutes of Health Grant P60HL48-482, awarded to the Georgia Sickle Cell Center.