A Seat at the Table: Family Conferences for Infants with Neurological Conditions.

Abstract

Objective: We aimed to characterize parents' perspectives on the value of and opportunities to improve conferences between parents of critically ill infants and the health care team. Background: The parent perspective on the value of family conferences in the intensive care unit is not well characterized. Methods: In this descriptive qualitative study, parents of infants with neurological conditions in the intensive care unit at a U.S. academic medical center completed longitudinal semi-structured interviews about their experiences making decisions and communicating with clinicians. Parents were included if they had an upcoming family conference to discuss goals of care or neurological prognosis. This secondary data analysis targets interview content about family conferences. Parent responses were characterized using a conventional content analysis approach. Results: Fifty-two parents of 37 infants completed 123 interviews. Parents described valuing when clinicians (1) provided space to process emotions, (2) prioritized "big picture" discussions about serious decisions, (3) dedicated time to parent questions, and (4) responded to parent concerns and made an effort to foster consensus. Parent-identified opportunities for improvement included: (1) having the team assume responsibility for calling regular meetings, (2) prioritizing attendance of consistent and supportive team members, and (3) summarizing meeting content for parents and documenting discussions for clinicians. Conclusions: These findings demonstrate that parents of infants with neurological conditions value family conferences as an important venue for communicating with the health care team. Future studies should explore the feasibility and impact of regularly scheduled family conferences, attendees dedicated to parent support, and accessible meeting summaries on therapeutic alliance, parent well-being, and communication quality.