Parental involvement in neonatal decision-making: a narrative review

In the neonatal intensive care unit (NICU), parents are frequently required to make preference-sensitive decisions under prognostic uncertainty and severe time pressure. Although family-centered care and shared decision-making (SDM) are widely advocated, evidence on how parental involvement varies across neonatal decision contexts remains fragmented. We searched multiple databases (MEDLINE, Embase, Web of Science, CINAHL, and PsycINFO) from inception to 5 September 2025 and included empirical studies reporting parental involvement in neonatal decision-making. Using a narrative synthesis, we organized and presented findings within a social-ecological framework (individual/family, clinical processes, team/organization, and policy/society). Across contexts, parental involvement is best understood as a dynamic continuum, ranging from clinician-led decision-making to SDM and, at times, parent-led decision-making. Most parents wish to be actively involved while also receiving clear clinical recommendations, and they need timely and comprehensible information, emotional support, and opportunities to revisit decisions as an infant's condition evolves. Greater perceived involvement is typically associated with better understanding, greater values-choice concordance, and lower decisional conflict and decisional regret. In contrast, routinized default pathways, inconsistent information across team members, and limited psychosocial support may undermine parental agency and increase burden. Actionable improvement targets include explicitly presenting options with clear framing, communicating uncertainty transparently, providing protected decision windows when feasible, and coordinating team roles to deliver consistent information.