Values in the Neonatal Intensive Care Unit: Insights into Caregiver Priorities.

Abstract

To identify and prioritize caregiver values related to high-quality care for infants hospitalized in the neonatal intensive care unit (NICU) and to examine variation in these values by caregiver and clinical characteristics. Sixteen domains of high-value NICU care were adapted for the neonatal, critical care setting from the National Consensus Project's Guidelines for Quality Palliative Care, neonatology literature, and a stakeholder panel. Using a discrete choice experiment, we recruited caregivers to provide their ratings of the most and least valued NICU care domains. Forty-five caregivers of 39 infants participated. Overall, caregivers ranked "Care team members have the necessary education and training to provide high quality care for infants and families," as most important with domains relating to communication and symptom management also ranked highly. Cultural, spiritual, and religious aspects of care were among the lowest ranked. Differences in highest ranked values were also noted based on the patient's length of stay, clinical status, and caregiver's relationship to the patient. Among caregivers of infants in the NICU, values emphasizing care team knowledge, communication, and symptom management were consistently prioritized. Identification of caregiver priorities during NICU hospitalization may help clinicians better understand the perspectives that shape families' experiences of care and support efforts toward value-concordant communication and shared decision-making.