Family Engagement in Pediatric Sickle Cell Disease Visits.

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.

Outcomes That Matter to Teens With Type 1 Diabetes.

Purpose The purpose of the study was to describe outcomes that matter to teens with type 1 diabetes. Understanding outcomes that matter to teens could support successful interventions to improve diabetes self-management. Methods Fifty publicly available posts published in the "teen" sections of 2 major diabetes online forums between 2011 and 2013 were analyzed using qualitative research methods. From each post, content and descriptive data (eg, duration of diabetes and age) were collected. Two members of the research team independently used open coding techniques to identify outcomes (defined as impacts or consequences of type 1 diabetes) and organized them into themes and subthemes. A codebook was jointly developed to facilitate the identification of meaningful outcomes from the posts. Results Teens' average age was 15.7 years, and the average time since diabetes diagnosis was 6.3 years. The 3 most commonly mentioned outcomes were (1) interactions with peers ("I want to talk to someone who understands"), (2) emotional well-being ("Diabetes makes me want to cry"), and (3) blood glucose management ("My blood sugar never goes down"). Other identified outcomes included (4) physical well-being, (5) education and motivation of others, (6) family interactions, (7) academic achievement, and (8) interactions with important others such as teachers. Conclusions While teens are concerned about control of their blood glucose, there are many other outcomes that matter to them. Health care providers and diabetes educators may want to consider these other outcomes when motivating teens with type 1 diabetes to improve blood glucose control.