| Description |
- Background: The parent perspective on the value of family conferences in the intensive care unit is not well characterized. We aimed to characterize parents’ perspectives on the value of and opportunities to improve conferences between parents of critically ill infants and the healthcare team.
Methods: Parents of infants with neurologic diagnoses in the intensive care unit at an academic medical center participated in longitudinal interviews about decision-making, which included questions about their experience during family conferences. Parents were included if they had an upcoming family conference to discuss goals of care or neurologic prognosis. A conventional content analysis approach was used to characterize parent responses.
Results: Fifty-two parents (n=37 mothers, n=15 fathers) of 37 infants completed 123 interviews. Parents described how family conferences offered opportunities to 1) receive decision-relevant education and ask questions, 2) discuss “big picture” trajectory of care and important decisions, 3) foster consensus between parents and the care team, and 4) process emotions. Parents identified several opportunities to improve family conferences, including: 1) having the care 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 a valuable role for family conferences in the care of infants with neurologic conditions. 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.
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