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The Neonatal Intensive Care Unit (NICU) has a language and culture that is its own. For professionals, it is a place of intense and constant attention to microdetails and cautious optimism. For parents, it is a foreign place with a new and unique language and culture. It is also the setting in which they are introduced to their child and parenthood for this child. This combination has been referred to as an emotional cauldron. The neonatal ethics literature mainly examines complex ethical dilemmas about withholding/drawing life sustaining interventions for fragile children. Rarely are everyday ethics or mundane ethics discussed. Microethics describe the mundane, discrete moments that occur between patients/families and clinicians. A key piece of these microethics is the language used to discuss patient care. Perception of prognoses, particularly around long-term neurodevelopmental outcome, is shaped with the language used. Despite this, clinicians in the NICU often have no specific training in the long-term neurodevelopment outcomes that they discuss. This paper focuses on the microethics of language used to discuss long-term neurodevelopmental outcomes, the developmental neuroscience behind language processing, and offers recommendations for more accurate and improved communication around long-term outcomes with families with critically ill neonates.

Children born prematurely (

Background: Healthy People 2030 emphasizes personal health literacy (individual skills) and organizational health literacy—the degree to which organizations equitably enable individuals to find, understand, and use information and services to inform health-related decisions and actions for themselves and others. However, research on the latter is in the early stages. Methods: This study describes an organizational health literacy assessment in a U.S. urban academic children’s hospital. A variety of evidence-based health literacy assessments were used to assess patient information materials and the environment, including institutional practices, navigation, culture and language, and communication. Trained interviewers and analysts reached consensus for all assessments. Results: Information Items: SMOG scores (n = 9) ranged from 7th- to 14th-grade reading level (average = 11.3). PEMAT-P scores (n = 9) ranged from 43.8% to 93.8% understandability and 0% to 80% actionability. CDC CCI scores (literacy demand) (n = 6) ranged from 18.2% to 58.8% (≥90% = excellent). SAM scores (suitability) (n = 6) fell in the “adequate” range (43.2–58.3%). The PMOSE/IKIRSCH scores (complexity) (n = 3) noted low-moderate difficulty. Apter’s Hierarchy (n = 4) revealed three numeracy domains (50% = descriptive purposes and decision-making, 100% = interpreting information). Organization-level: Walking interviews highlighted organizational facilitators and barriers related to the pre-visit and visit environments. HLE2 domain scores ranged from 52% to 68%. Conclusions: Organizational health literacy demands far outweigh the average literacy skills of adults in the U.S. (patients and staff). Findings can be used to hone quality improvement and other processes to focus on structural solutions to increase health equity.