Neonatal Fellow Seattle Children's/University of Washington Seattle, Washington, United States
Background: The NICU is a stressful and emotional experience for many parents. Parental stress and anxiety scores in the ICUs are most powerfully associated with the parents’ perception of the severity of their child’s illness. Discrepancies in illness perception (IP) between parents, physicians, and nurses can lead to moral distress and is a key barrier to advanced care planning in pediatrics. Little previous work has empirically evaluated differences in IP in the NICU. Objective: This study aims to provide a fuller understanding of IP in the NICU. We will a) evaluate the relationship of IP across three categories of stakeholders (parent, bedside nurse, and attending physician) and b) assess how IP changes over time. These findings can be used to help those aiming to improve the NICU experience for parents, nurse, and physicians. Design/Methods: This study utilizes the standardized tool: the Brief Illness Perception Questionnaire (BIPQ) adapted for use in the NICU which will be used as a measure of illness perception.
At enrollment and weekly for each infant, one parent, the bedside nurse, and the attending physician are approached to complete a survey. This survey consists of demographic data, the BIPQ, and questions concerning communication, familiarity with the case, and end of life metrics. Data extraction including demographic data, admission data, objective markers of illness severity, and discharge data are collected at similar intervals.
The results of this data collection will be compiled with the help of a statistician to achieve the aims listed above.
At the time of this submission, IRB approval has been obtained and study enrollment is underway with 34 out of 40 infants enrolled. We are on track to complete new enrollment in December, complete data collection in January 2024, and complete statistical analysis in February.
