P1.196: Discharge Home from the NICU: Learning from the Family Experience

Background: Discharge home from the Neonatal Intensive Care Unit (NICU) is a stressful and complex transition for families who have spent weeks to months in an intensive care environment. This transition to home can be challenging both emotionally and logistically for parents adjusting to caring for their infant outside the structured support of the NICU. Although a baby’s medical readiness for discharge is routinely assessed, less is known about parental readiness and the family’s experience during this transition. The goal of this study was to explore the parental perspective around the time of NICU discharge through qualitative analysis of narratives collected during routine post-discharge follow-up calls.

Methods: We conducted a retrospective qualitative analysis of parent responses to a follow-up home phone questionnaire administered by our discharge coordinator between 2008 and 2024. The questionnaire, implemented for quality improvement purposes, explored parental experiences with the discharge process, including access to follow-up care, medication administration, and routine infant care. Follow-up calls were conducted in the family’s primary language, with professional interpreters utilized as needed. For this analysis, we focused on responses to open-ended questions that asked parents to identify the most helpful aspects of the discharge and transition-to-home process, as well as areas for improvement. A deductive thematic analysis was conducted using iterative coding by three independent reviewers. Emerging themes were synthesized into a conceptual framework, informed by and mapped onto the revised Kenner’s Transition Model (KTM).

Results: We identified two overarching domains, each encompassing distinct but sometimes overlapping themes. The first domain captured factors that facilitated the discharge and transition-to-home process, with three main themes: (1) Educational Strategies, reflecting parents’ perceptions of comprehensive and effective discharge teaching; (2) NICU Care Team, highlighting appreciation for the dedication and support of clinical staff; and (3) Parental Involvement, emphasizing how early engagement in infant care contributed to a sense of readiness. The second domain reflected areas for improvement and included three main themes: (1) Logistics, referring to challenges related to operational aspects of discharge and availability of facility resources; (2) Communication, which focused on inconsistencies in information to families during discharge planning; and (3) NICU Care Team, in this context referencing variability among staff managing the discharge process (Table 1). Across both domains, identified themes aligned with and expanded upon constructs from the revised Kenner’s Transition Model (KTM), particularly related to Informational Needs, Professional Support, Stress and Coping, and Parent-Child Role Development (Figure 1).

Conclusion: Discharge from the NICU is a critical transition in the family’s journey. Incorporating parent feedback is essential to identifying key elements that can inform and strengthen the discharge process. A deeper understanding of parental experiences can guide improvements aimed at reducing stress, fostering parental confidence, and ultimately supporting a successful transition to home.