Perspectives of Adolescents and Young Adults With Sickle Cell Disease and Clinicians on Improving Transition Readiness With a Video Game Intervention.

We aimed to learn the experiences of clinicians and adolescents and young adults with sickle cell disease (AYA-SCD) with managing their disease at home and making medical decisions as they transition from pediatric to adult care, and their perceptions of a video game intervention to positively impact these skills. We conducted individual, semistructured interviews with patients (AYA-SCD ages 15 to 26 years) and clinicians who provide care to AYA-SCD at an urban, quaternary-care hospital. Interviews elicited patients' and clinicians' experiences with AYA-SCD, barriers and facilitators to successful home management, and their perspectives on shared decision-making and a video game intervention. To identify themes, we conducted an inductive analysis until data saturation was reached. Participants (16 patients and 21 clinicians) identified 4 main themes: (1) self-efficacy as a critical skill for a successful transition from pediatric to adult care, (2) the importance of patient engagement in making medical decisions, (3) multilevel determinants of optimal self-efficacy and patient engagement, and (4) support for a video game intervention which, by targeting potential determinants of AYA-SCD achieving optimal self-efficacy and engagement in decision-making, may improve these important skills.

Stakeholder Perspectives on Hospitalization Decisions and Shared Decision-Making in Bronchiolitis.

OBJECTIVES: Our objective was to elicit clinicians' and parents' perspectives about decision-making related to hospitalization for children with bronchiolitis and the use of shared decision-making (SDM) to guide these decisions. METHODS: We conducted individual, semistructured interviews with purposively sampled clinicians (pediatric emergency medicine physicians and nurses) at 2 children's hospitals and parents of children age <2 years with bronchiolitis evaluated in the emergency department at 1 hospital. Interviews elicited clinicians' and parents' perspectives on decision-making and SDM for bronchiolitis. We conducted an inductive analysis following the principles of grounded theory until data saturation was reached for both groups. RESULTS: We interviewed 24 clinicians (17 physicians, 7 nurses) and 20 parents. Clinicians identified factors in 3 domains that contribute to hospitalization decision-making for children with bronchiolitis: demographics, clinical factors, and social-emotional factors. Although many clinicians supported using SDM for hospitalization decisions, most reported using a clinician-guided decision-making process in practice. Clinicians also identified several barriers to SDM, including the unpredictable course of bronchiolitis, perceptions of parents' preferences for engaging in SDM, and parents' emotions, health literacy, preferred language, and comfort with discharge. Parents wanted the opportunity to express their opinions during decision-making about hospitalization, although they often felt comfortable with the clinician's decision when adequately informed. CONCLUSIONS: Although clinicians and parents of children with bronchiolitis are supportive of SDM, most hospitalization decision-making is clinician guided. Future investigation should evaluate how to address barriers and implement SDM in practice, including training clinicians in this SDM approach.