Stakeholder perspectives: Communication, care coordination, and transitions in care for children with medical complexity

PURPOSE: The purpose of this study was to obtain feedback on communication, care coordination, and transitions in care for hospitalized children with medical complexity (CMC). DESIGN AND METHODS: This descriptive, mixed-methods study used online surveys with forced-choice and open-ended questions to obtain stakeholder feedback. Stakeholders included parents, healthcare providers, and nurses. Participants over 18 years of age were recruited from a Midwest children's hospital inpatient unit dedicated to care of CMC. Quantitative data were analyzed using t-tests and one-way analysis of variance. Qualitative description was used to analyze responses to open-ended questions. RESULTS: Parents' ratings of communication, care coordination, and transitions in care were generally high. Transitions from other facilities to the emergency department and unit received lower ratings. Providers and nurses gave high ratings to overall care, communication among providers and nurses on the patient unit, and experiences with discharge; however, between unit communication and unit-based coordination received lower ratings. Providers and nurses had higher ratings for discharge preparation than parents (p ≤ .001). Three themes were identified in responses to the open-ended questions: establishing balanced and collaborative relationships between the care team and families, taking a proactive approach to care coordination, and the importance of an inclusive, interdisciplinary, and centralized approach to care coordination and communication. PRACTICE IMPLICATIONS: Collaboration among all stakeholders is needed to achieve coordinated care, inclusive communication, and transitions with positive outcomes during hospitalization. Parents identified a need for consistent communication from care teams, with the primary inpatient team taking a lead role. Including parents in care coordination and transitions in care is key, as they are the experts in their children's health and well-being.