Brief Report: Parent Perspectives of Nutritional Status and Mealtime Behaviors in Children with Sickle Cell Disease

Objective To qualitatively evaluate parent perspectives of eating problems, nutritional status, and the potential for nutritional intervention in children with sickle cell disease (SCD). Methods Twenty parents of children with SCD participated in one of three focus groups to discuss questions related to the study’s objectives. Three coders rated transcripts to identify common perceptions and experiences (themes) among participants. Results Poor appetite and its impact on nutritional and general health were particular concerns for parents. Parents addressed eating challenges with dietary supplementation, limit setting, and compromising at meals, often without consultation from health professionals. An intervention program should include facilitators, such as flexible scheduling and incentives to counter barriers, such as scheduling and child care conflicts. Conclusions Parents of children with SCD reported a range of eating behavior challenges. Parents presented ideas on how nutritional intervention could be culturally sensitive and on how to promote participation in such programs. Key words nutrition; mealtime challenges; pediatric sickle cell disease; focus group; intervention. Sickle cell disease (SCD) is a genetic disorder that causes severe hemolytic anemia and is most common in people of African ancestry. Although the gene does not affect growth, approximately one third of children with SCD are below the 5th percentile for height or weigh