Narrative review on parental involvement in neonatal decision-making

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Frontiers in Medicine Published April 23, 2026 Medically reviewed May 25, 2026 DOI ↗ By Dr. Sofia Müller, MD · Lifespan & Whole-Person Care

Key Takeaway

Consider that greater parental involvement in NICU decisions is associated with better outcomes, but evidence is fragmented.

This is a narrative review synthesizing empirical studies on parental involvement in neonatal intensive care unit (NICU) decision-making for preference-sensitive decisions under prognostic uncertainty and severe time pressure. The authors describe parental involvement as a dynamic continuum, from clinician-led to shared and parent-led decision-making, noting most parents wish to be actively involved while also receiving clear clinical recommendations.

The review finds that greater perceived parental involvement is typically associated with better understanding, greater values-choice concordance, lower decisional conflict, and lower decisional regret. However, routinized default pathways, inconsistent information across team members, and limited psychosocial support may undermine parental agency and increase burden.

Key limitations include fragmented evidence and the narrative synthesis approach, which may not quantify effects precisely. The authors note that associations are reported, but causation is not established, and certainty of evidence is not quantified.

Practice relevance includes actionable targets such as explicitly presenting options with clear framing, communicating uncertainty transparently, providing protected decision windows when feasible, and coordinating team roles to deliver consistent information.

Study Details

Study typeSystematic review

EvidenceLevel 1

PublishedApr 2026

View Original Abstract ↓

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.