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

Abstract

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.