648 - Values in the NICU: Insights into Caregiver Priorities

Publication Number: 4634.648

Kathryn Cyrus, East Tennessee State University James H. Quillen College of Medicine, Johnson City, TN, United States; Amy Creel, Louisiana State University School of Medicine in New Orleans, New Orleans, LA, United States; Ashley Autrey, Louisiana State University School of Medicine in New Orleans, New Orleans, LA, United States; Jeffrey Surcouf, LSU Health Sciences Center, New Orleans, LA, United States

Background: Medical practice has evolved in the modern age, moving away from paternalism and towards shared decision making. In pediatrics, and especially the care of neonates, this involves the child's caregivers and their perceptions, goals, hopes, and values regarding the best treatment course for their infant. Value sets are complex, multifaceted, and highly personal to each family unit; they are also integral to each baby's individualized care plan. Moreover, parent and provider values can differ significantly which can lead conflicts in the shared decision making process. Without explicitly addressing a family's values, physicians are missing a key component of shared decision making. Limited literature exists to inform physicians of caregivers' most salient values regarding their infant's care during a neonatal intensive care unit (NICU) admission. Studies have assessed parents' values prenatally relating to delivery room plans but not throughout the infant's NICU course once out of the initial acute phase.

Objective: To administer a discrete choice experiment (DCE) survey of domains of high-quality care in the NICU to caregivers to determine an identifiable emphasized value or set of values, and if these values change with certain demographic characteristics.

Design/Methods: 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 DCE, recruited caregivers provided their ratings of the most and least valued NICU care domains.

Results: 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 patient's length of stay, clinical status, and caregiver's relationship to patient.

Conclusion(s): Among caregivers of infants admitted to the NICU, values emphasizing knowledge and communication skills are paramount, whereas socio-cultural aspects were ranked least important throughout their infant's NICU course. This objective delineation of caregiver values is vital to optimizing shared decision-making and the physician- family relationship built on communication and trust.

Domains of High Quality Care in the NICU.
This table displays the full list of domains of high value care along with the full description of the domain as it was presented to caregivers.

Average importance scores across caregivers.
The point estimate represents the mean importance score of each value for all caregivers. The 95% confidence interval around each point estimate represents our level of confidence that the interval captures the true point estimate.

Top six most important values of High and Low Acuity.
The 95% confidence intervals around each value's score represents our level of confidence that the interval captures the true value's score. *** represents statistical significance with p<0.05.