290 - Factors That Influence Family Engagement in the NICU & Strategies to Cultivate NICU Family Leaders

As infants in the NICU fight to survive, NICU parents must learn how to navigate intense feelings of guilt, anxiety, and shame, while processing an overwhelming amount of new information. NICU families often suffer immense, life-long burdens. The trauma of the NICU can interfere with parents’ ability to nurture and bond with their baby. Parental well-being is intertwined with child well-being and thus adequate engagement and resources for NICU families are essential. NICU family leaders are uniquely positioned to help improve care for in-patient NICU families.

Objective:

The objective of this research is to help integrate families as part of the care team and build a more diverse, inclusive community of NICU family leaders.

Design/Methods:

This qualitative study, approved by the UC Davis IRB, used semi-structured, in-depth interviews with 22 NICU clinicians. The 1:1 interviews were conducted and recorded via Zoom, transcribed via Sonix, and analyzed in Dedoose. The 22 interviews were conducted between June–Sept of 2022 with NICU clinicians, including 14 neonatologists, 3 neonatal nurses, 3 neonatal nurse practitioners, and 2 neonatal nurse scientists.

Results:

Families with more economic, social, and cultural capital tend to be more engaged and are most likely to be invited to serve in post-NICU family leadership roles. Additional significant factors include:

< !Infrastructure: healthcare champions, administrative support, and institutional funding foster family engagement and leadership.

<  Sense of belonging: if families do not feel supported and connected in the NICU during their trauma, they are less likely to be engaged or serve in a leadership role after they have left the hospital.

<  Relationships: NICU families who develop rapport with the healthcare team and other NICU parents, are more likely to feel valued and heard, and want to become more engaged. Clinicians and families develop a sense of connection when they can relate to one another.
Vulnerability: being engaged in the NICU and serving as a leader post-NICU requires vulnerability, and being vulnerable feels safer for families who trust the stakeholders and system to respect, reflect, and accept them.

Conclusion(s):

As the field aims to integrate families, more intention is needed to engage the full spectrum of families, not just those with the most capital and comfort navigating the system. A more diverse, inclusive community of NICU family leaders has the potential to improve care by helping families better advocate for themselves and their babies, access crucial resources, and serve as informed members of their children’s care team.