520 - Parental involvement is critical to quality improvement initiatives to improve neuroprotective care and outcomes for preterm infants

Publication Number: 520.5916

Elizabeth E. Rogers, University of California, San Francisco, School of Medicine, San Francisco, CA, United States; Courtney C.. Breault, California Perinatal Quality Care Collaboration, Barrington, IL, United States; Jessica Liu, Stanford University School of Medicine, Palo Alto, CA, United States; Xin Cui, Stanford University School of Medicine, Palo Alto, CA, United States; Jennifer M. Canvasser, Necrotizing Enterocolitis (NEC) Society, Davis, CA, United States; Necole McRae, Free2Read Educational Recovery Services, SACRAMENTO, CA, United States; Mindy Morris, Stanford University School of Medicine, Huntington Beach, CA, United States; Roberta Pineda, University of Southern California, Altadena, CA, United States; Jochen Profit, Stanford University School of Medicine, Palo Alto, CA, United States

Background: Although survival for preterm infants has improved, long-term neurodevelopmental outcomes have not. In an attempt to improve neurodevelopmental outcomes among very preterm patients, the California Perinatal Quality Care Collaborative (CPQCC) sponsored a quality improvement (QI) collaborative focused on NICUs Enabling Optimal Brain Health (NEOBrain). Family partnership, as a critical strategy to improve neonatal brain health, was prioritized throughout: as key members on the faculty panel, on each local QI team, and in the selection of aims and metrics. The global aim of NEOBrain was to improve neuroprotective care delivery and outcomes through promoting positive environmental interactions, minimizing unnecessary interventions, and integrating families as partners. Importantly, family experts with lived experience helped frame all elements of the collaborative, including a secondary objective of implementing a neuroprotective culture of care to improve family experience and confidence in care at discharge.

Objective: To describe family experiences and confidence at discharge from the NICU within a subcohort of patients from the CPQCC NEOBrain QI collaborative.

Design/Methods: Family experience and confidence at discharge were collected in a standardized questionnaire among very low birth weight infants (VLBW) across 27 NICUs who were part of the NEOBrain QI collaborative just prior to discharge and was available in Spanish and English. The survey was based on the published Karitane Parenting Confidence Scale and the Everyday Discrimination Scale adapted for health care settings and was designed to formalize parental input into quality initiatives. Responses were analyzed using SAS version 9.4 (Cary, NC).

Results: Among 3338 total infant records in the collaborative, 311 parental surveys (9%) were completed. 276 (89%) were in English and 35 (11%) were in Spanish. Among English and Spanish survey respondents, 81% and 83% respectively reported feeling ready to take their baby home. 37% of English respondents reported that being a parent was very stressful, compared to only 20% of Spanish respondents (p <.001). However, Spanish survey respondents were more likely to report being treated as not smart, and that hospital staff acted afraid of (p=0.03) or better than them (p=0.07).

Conclusion(s): In this statewide QI collaborative, family experience and confidence in care at discharge showed variation across several domains, including preferred language, emphasizing the critical need for equity focused QI initiatives and authentic family partnership to improve long term outcomes for preterm infants.

Table
NEOBrain Table for PAS.pdfCharacteristics of participating hospitals

Figure 1
NEOBrain Parent Figure 1.pdfResults of parental questionnaires completed in English

Figure 2
NEOBrain Parent Figure 2.pdfResults of parental questionnaires completed in Spanish