Supporting Parents of Infants With Chronic Critical Illness in the Transition From NICU to Home.

Abstract

Infants with chronic critical illness (CCI) are increasingly surviving to neonatal intensive care unit (NICU) discharge. Following discharge, parents of infants with CCI must navigate complex decision-making, provide direct intensive care, "including managing supportive technologies", and coordinate complex medical care, yielding high rates of distress. However, this vulnerable population's specific support needs remain poorly understood. In this longitudinal qualitative study, we conducted semi-structured interviews with parents of infants with CCI in 2 care settings: (1) NICU toward the end of the infant's admission, and (2) home within 3 months of discharge. Rapid qualitative analysis identified emergent themes. Matrix analysis enabled comparison of content across individuals, care settings, and domains. A total of 17 parents of 15 infants with CCI completed an interview while in the NICU, and 13 completed a second interview after discharge. Most parents were mothers (88%) and married (53%), and over one-quarter were Black (29%) or Latinx (24%). The most common infant diagnosis was prematurity (40%), and all infants were supported by medical technologies at discharge. Parents reported supports, gaps in support, and recommendations for improving supports across care settings. Their narratives depicted the contrast between feeling highly supported during the NICU stay and strikingly under-supported after discharge, illuminating the need for additional hospital- and community-based supports to bridge this transition. Parents of infants with CCI report a steep decline in supports on NICU discharge. Further studies must partner with parents to identify and test interventions to accompany them through the critical transition from NICU to home.