Feasibility of an Intervention to Support Shared Decision-Making for Critically Ill Infants.

OBJECTIVE: To develop and pilot an intervention to support communication and decision-making for critically ill infants. STUDY DESIGN: In this single-arm, mixed-methods, prospective, feasibility study, we enrolled infants, parents, and clinicians at a single tertiary care center. The Building Rapport, Improving Dialogue, and Growing Empathy intervention contains a values clarification exercise and question prompt list that parents can opt to share with the health care team. Parent and clinician participants completed surveys and semistructured interviews ≥72 hours postintervention. The primary outcome was intervention feasibility, defined as an enrollment rate ≥50% and a complete data collection rate ≥80%. Secondary outcomes included intervention acceptability and preparation for decision-making (Preparedness for Decision-Making Scale, score: 0-100, higher scores indicating higher preparedness). Statistical analyses were descriptive, and interviews were analyzed using a rapid-cycle qualitative approach. RESULTS: Thirty clinicians and 44 parents of 30 infants were enrolled (enrollment rate: 56%; complete data collection rate: 97%). The majority of parents and clinicians endorsed the tool as helpful, would recommend the tool to other parents, and would use the tool in the future. Preparedness for decision-making was high for both mothers (median score = 82, IQR: 70.0-90.0) and fathers (median score = 60, IQR: 38-74). Qualitative analysis of the intervention's impact identified 4 themes: (1) providing a scaffold; (2) validating and affirming experience; (3) preparing for a conversation; and (4) facilitating connection. CONCLUSIONS: The Building Rapport, Improving Dialogue, and Growing Empathy intervention was feasible and acceptable to parents and clinicians. Future work should assess its impact on values-congruent decision-making, therapeutic alliance, and infant outcomes. TRIAL REGISTRATION: NCT05733975.

Duke Scholars

Author Monica Elizabeth Lemmon Pediatrics, Neurology

Author Hwanhee Hong Biostatistics & Bioinformatics, Division of Biostatistics

Author Debra Huffman Brandon School of Nursing

Author Kathryn IIonka Pollak Population Health Sciences

Author Christopher Ethan Cox Medicine, Pulmonary, Allergy, and Critical Care Medicine

Author Gregory P. Samsa Biostatistics & Bioinformatics, Division of Biostatistics