30 - Advancing Family Engagement in the NICU: A Qualitative Exploration of Barriers and Facilitators

Publication Number: 4029.30

Laura A. Rose, University of California, San Diego School of Medicine, La Jolla, CA, United States; Kayla Schmittau, University of California, San Diego School of Medicine, San Diego, CA, United States; Kristen Schaffer, University of California, San Diego School of Medicine, San Diego, CA, United States; Alejandro Chavez, University of California San Diego Health, La Jolla, CA, United States; Linda S.. Franck, University of California, San Francisco, San Francisco, CA, United States; Henry Lee, University of California San Diego, La Jolla, CA, United States

Background: Preterm birth contributes significantly to disparate neonatal outcomes. Family engagement-defined as the capacity and motivation to participate in care-is essential for mitigating stress and enhancing outcomes in the neonatal intensive care unit (NICU). Families from minoritized populations face compounded barriers, particularly concerning access to and use of paid family leave (PFL).

Objective: Explore facilitators and barriers to family engagement for NICU parents, with focus on families' use of leave programs and gaps in accessing services.

Design/Methods: We conducted semi-structured interviews with NICU parents at two San Diego NICUs between 2023 and 2025. Eligible participants had infants born < 32 weeks' gestation and were English- or Spanish-speaking. Interviews were conducted in the family's preferred language, audio-recorded, de-identified, transcribed, and analyzed via inductive thematic analysis. Codes were organized into facilitators versus barriers, then mapped to the socioecological model (SEM). Themes and subthemes were refined through consensus among team members.

Results: Of 25 participating families (18 English-, 7 Spanish-speaking), 14 were from the Level IV NICU, 11 from the Level III NICU (Table 1). Factors impacting family engagement were organized into five themes: communication patterns, including discrepancies for non-white and non-English speaking families; infant health influencing mental wellbeing; competing priorities outside the NICU; logistical challenges highlighting the importance of support services; and family leave accessibility. See Table 2 for subthemes with representative quotations regarding factors impacting family engagement.
Challenges accessing family leave were exacerbated by the unpredictability of preterm birth. Although some families benefited from flexible or remote work, variation in leave utilization underscored complex, inequitable leave practices between birthing and non-birthing parents. Figure 1 highlights the challenges to family leave access, organized by levels of the SEM. Facilitators to engagement included access to extended family support, consistent communication by NICU staff, availability of social work resources, and digital health technology.

Conclusion(s): Caregivers of NICU infants face unique challenges related to the demands of work, family, and learning to care for their infants. We learned important perspectives from caregivers on factors impacting NICU engagement, with novel insights regarding family leave. Equitable access to leave policies, comprehensive communication, and supportive institutional practices can optimize engagement.

Table 1
Demographic characteristics of interview participants, inclusive of both NICU sites.

Table 2
Themes regarding factors impacting family engagement, with corresponding subthemes and representative quotations.

Figure 1
Barriers to paid family leave (PFL), organized by levels of the socioecological model (SEM). Arrow on the left of the pyramid highlights the cumulative impact of these barriers.