Child-rearing practices of primary caregivers of children with sickle celldisease: The perspective of professionals and caregivers

Objective: To obtain caregiver and medical professional opinions regarding the child-rearing practices of caregivers of children with sickle cell dise ases (SCD). Methods: We obtained self-reports of parenting practices from 48 caregivers of children with SCD and 48 caregivers of matched classroom comparison pee rs using the Child-Rearing Practices Report (CRPR). CRPR ratings were also obtained from 12 experts in pediatric SCD regarding their predictions of ho w a parent of a child with SCD would respond. The experts predicted differe nces in protectiveness, discipline, and excessive worry. Objective interim and lifetime illness severity scores were obtained for the children with SC D. Results: Caregivers showed similarity between the two groups, disagreement with the experts, and minimal relationship to illness severity. Conclusions: Experts who work with children with chronic illnesses such as SCD seem to have stereotyped ideas that do not correspond with parental rep orts of their child-rearing practices, suggesting the need for careful clin ical evaluations.