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Updated: Aug 28, 2026
Assessment and Evaluation of the High Risk Neonate: The NICU Network Neurobehavioral Scale
Published on: August 25, 2014
Communication of Illness Severity to Parents in the Neonatal Intensive Care Unit: A Scoping Review of Communication
Yasmine Tremblay1, Kyra McKinnon1, Jeneesha Dhaliwal2
1British Columbia Children's Research Institute, University of British Columbia (UBC), Vancouver, BC V6H 3N1, Canada.
Abstract:
Background/Objectives: Communication about illness severity in the neonatal intensive care unit (NICU) occurs in settings of uncertainty and changing clinical status. Reviewing how the literature describes this communication may clarify current practices and identify gaps in how parents receive severity-related information. This scoping review aimed to describe how illness severity is communicated to parents in the NICU, including parental engagement, communication goals, informational content, framing, and communication across periods of clinical stability and deterioration. Methods: We conducted a scoping review using the Joanna Briggs Institute method and reported it according to PRISMA-ScR guidelines. MEDLINE (Ovid) was searched from 2010 to 2025. We included studies that reported empirical data on communication about infant clinical status or illness severity and included parental perspectives. A framework, informed by parental information behaviour and prognostic communication models, guided the data extraction. Results: We included 25 studies. Communication was most often clinician-led and often combined active and passive approaches. Communication primarily focused on information sharing rather than decision-making. Discussions were largely biomedical; however, several studies also included treatment- and care-related information. Studies inconsistently described prognostic communication and did not emphasize optimistic or pessimistic framing. Few studies examined communication across distinct phases of illness trajectory, such as clinical stability or deterioration. Conclusions: Illness severity communication in the NICU remains largely clinician-led, with limited attention to parental engagement and changes across the infant's clinical course. Greater consideration of parental information needs, prognostic communication, and illness trajectory may support more responsive communication practices in NICU care.
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