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Family Engagement in Pediatric Sickle Cell Disease Visits. Health Commun 2017 01;32(1):51-59 PMID: 27159356 PMCID: PMC5551046

Pubmed ID



Adults with sickle cell disease (SCD) report problems in relationship building and information exchange during clinic visits. To explore the origin of these communication challenges, we compare communication in pediatric SCD, diabetes, and asthma visits. We collected visit videos and parent surveys from 78 children ages 9-16 years with SCD, asthma, or diabetes. Coders assessed child, parent, and physician utterances reflecting relationship building, information giving, and information gathering. Associations of engagement with type of chronic disease visit were performed with negative binomial regression. Compared to SCD visits, children in diabetes visits spoke 53% more relationship-building utterances (p < .05) and physicians in asthma visits spoke 48% fewer relationship building utterances to the child (p < .01). In diabetes visits, physicians gave almost twice as much information to children and gave 48% less information to parents (both p < .01) compared to SCD visits. Compared to SCD visits, physicians spoke fewer information-gathering utterances to parents in diabetes and asthma visits (85% and 72% respectively, both p < .001). SCD visits reflect less engagement of the children and greater physician effort to gather information from parents. These differences highlight opportunities to enhance engagement as a mechanism for ultimately improving SCD care.

Author List

Cox ED, Swedlund MP, Young HN, Moreno MA, Schopp JM, Rajamanickam V, Panepinto JA


Julie A. Panepinto MD, MSPH Professor in the Pediatrics department at Medical College of Wisconsin


2-s2.0-84966710038   1 Citations

MESH terms used to index this publication - Major topics in bold

Anemia, Sickle Cell
Chronic Disease
Diabetes Mellitus, Type 1
Office Visits
Patient Education as Topic
Patient Participation
Professional-Family Relations
Videotape Recording
jenkins-FCD Prod-310 bff9d975ec7f2d302586822146c2801dd4449aad