Parent and Provider Perspectives on Primary Continuity Intensivists and Nurses for Long-Stay Pediatric Intensive Care Unit Patients.

Primary continuity intensivists and nurses for long-stay patients (LSPs) in pediatric intensive care units (PICUs) are understudied strategies used to mitigate the fragmented care of typical rotating care models. To investigate the advantages and disadvantages of primary continuity intensivists and nurses for LSPs as perceived by their parents and PICU providers. We conducted a prospective cross-sectional mixed-methods study of the perspectives of parents whose children were admitted to a PICU for >10 days and had one or more complex chronic conditions regarding the care provided by their PICU intensivists and nurses. As part of a trial, patients had been randomized to care provided by a rotating on-service intensivist who changed weekly and by PICU nurses who changed every 12 hours (usual care group) or to care provided by the same on-service intensivist plus a primary continuity intensivist and primary nurses (primary group). In addition, PICU providers (intensivists, fellows, and nurses) were queried for their perspectives on primary intensivists and nurses. Novel questionnaires, assessed for content and face validity and for readability, were used. The parental questionnaire involved indicating their degree of agreement with 16 statements about their children's care. The provider questionnaire involved rating potential advantages of primary continuity intensivists and nurses and estimating the frequency of disadvantages. Descriptive statistics and divergent stack bar charts were used; parents' and providers' responses were compared, stratified by their children's group (usual care or primary) and provider role, respectively. The parental response rate was 71% (120 completed questionnaires). For 10 of 16 statements, parents whose children had primary continuity intensivists and nurses indicated significantly more positive perceptions of care (e.g., communication, listening, decision making, problems due to changing providers). The provider response rate was 61% (117 completed questionnaires); more than 80% believed that primary intensivists and nurses were highly or very highly beneficial for LSPs. Providers perceived more benefits for patients/families (e.g., informational continuity, facilitating and expediting decision making) than for staff/institutions (e.g., staff satisfaction). Providers reported associated stress, expenditure of time and effort, and decreased staffing flexibility with primary practices. Perceived benefits of primary continuity intensivists and nurses by both parents and providers support more widespread adoption and study of these continuity strategies.