Perspectives of Pediatric Providers on Patients With Complex Chronic Conditions: A Mixed-Methods Sequential Explanatory Study

Abstract

Background Children with complex chronic conditions present unique challenges to the pediatric intensive care unit, including prolonged length of stay, complex medical regimens, and complicated family dynamics. Objectives To examine perspectives of pediatric intensive care unit health care providers regarding pediatric patients with complex chronic conditions, and to explore potential opportunities to improve these patients’ care. Methods A prospective mixed-methods sequential explanatory study was conducted in a tertiary medical-surgical pediatric intensive care unit using surveys performed with REDCap (Research Electronic Data Capture) followed by semistructured interviews. Results The survey response rate was 70.6% (77 of 109). Perspectives of health care providers did not vary with duration of work experience. Ten semistructured interviews were conducted. Eight overarching themes emerged from the interviews: (1) the desire for increased formal education specific to pediatric complex chronic care patients; (2) designation of a primary intensivist; (3) modifying delivery of care to include a discrete location for care provision; (4) establishing daily, short-term, and long-term goals; (5) monitoring and documenting care milestones; (6) strengthening patient and family communications with the health care team; (7) optimizing discharge coordination and planning; and (8) integrating families into care responsibilities. Conclusions Pediatric intensive care unit health care providers’ perspectives of pediatric patients with complex chronic conditions indicated opportunities to refine the care provided by establishing daily goals, coordinating discharge planning, and creating occasions for close communication between patients, families, and providers.