title: Family Engagement in Pediatric Sickle Cell Disease Visits.
abstract: 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.
authors.affiliation: a Department of Pediatrics , University of Wisconsin School of Medicine and Public Health.
authors.forename: Elizabeth D
authors.initials: ED
authors.lastname: Cox
authors.affiliation: b Department of Family Medicine , University of Wisconsin School of Medicine and Public Health.
authors.forename: Matthew P
authors.initials: MP
authors.lastname: Swedlund
authors.affiliation: c Department of Clinical and Administrative Pharmacy , University of Georgia.
authors.forename: Henry N
authors.initials: HN
authors.lastname: Young
authors.affiliation: a Department of Pediatrics , University of Wisconsin School of Medicine and Public Health.
authors.forename: Megan A
authors.initials: MA
authors.lastname: Moreno
authors.affiliation: a Department of Pediatrics , University of Wisconsin School of Medicine and Public Health.
authors.forename: Jennifer M
authors.initials: JM
authors.lastname: Schopp
authors.affiliation: d Department of Biostatistics and Medical Informatics , University of Wisconsin School of Medicine and Public Health.
authors.forename: Victoria
authors.initials: V
authors.lastname: Rajamanickam
authors.affiliation: e Department of Pediatrics, Hematology/Oncology/Bone Marrow Transplant , Medical College of Wisconsin, Children's Hospital of Wisconsin.
authors.forename: Julie A
authors.initials: JA
authors.lastname: Panepinto
mesh_terms: D000293:Adolescent; D000755:Anemia, Sickle Cell / Q000628:therapy*; D001249:Asthma / Q000628:therapy*; D002648:Child; D002908:Chronic Disease; D003142:Communication; D003922:Diabetes Mellitus, Type 1 / Q000628:therapy*; D005260:Female; D006801:Humans; D008297:Male; D009819:Office Visits; D010353:Patient Education as Topic / Q000379:methods*; D010358:Patient Participation; D011368:Professional-Family Relations; D014743:Videotape Recording