Navigating Uncertainty during Family Meetings in the Pediatric Cardiac Intensive Care Unit: A Qualitative Investigation of Team Communication and Family Engagement

Context: Uncertainty is a known barrier to effective communication during family meetings in the pediatric cardiac intensive care unit (CICU), however, limited data has characterized patterns of communication during these meetings, limiting our ability to make best practice recommendations to clinicians.

Objectives: To characterize how uncertainty is communicated by cardiac critical care teams during family meetings, to characterize family responses to uncertainty, and to explore how expressions of uncertainty impact specific responses.

Methods: We conducted a retrospective study of 58 family meetings recorded in a pediatric CICU. Participants were families of patients admitted to the CICU and members of the interprofessional CICU team. We coded uncertainty statements expressed by clinicians and family responses to uncertainty statements. Codes were extracted and analyzed for thematic content.

Results: We identified three themes around which clinicians expressed uncertainty: prognosis, treatment trajectories, and discharge planning. Expressions were most frequently unburied (62.3%) and implicit (66.5%). Five themes were identified within family responses to uncertainty: Brief acknowledgment (36.7%); clarification (30.0%); summary (12.3%); child information (12.3%); and emotions, preferences, and reflections (8.6%). Brief acknowledgements often followed lengthy, complex medical information provided by clinicians. Families often responded to implicitly communicated uncertainty by summarizing, clarifying, and providing additional details about their experiences, observations, and preferences.

Conclusions: Our results encourage clinicians to communicate uncertainty in an unburied and explicit manner, which may reduce the burden on families to engage in effective communication strategies, such as clarifying and summarizing opaquely stated information.