769 - Words Matter: Improving Communication with Families of Periviable Infants

Publication Number: 2750.769

Kelsi Morgan, Texas Children's Hospital, Houston, TX, United States; Shweta Parmekar, Baylor College of Medicine, Houston, TX, United States; George Mandy, Baylor College of Medicine, Houston, TX, United States; Karen E.. Johnson, Baylor College of Medicine, Houston, TX, United States

Background: Over the past several decades, neonatal intensive care units have resuscitated infants at progressively younger gestational ages. While more infants are surviving to discharge, many of these infants still face significant morbidity over the course of their NICU journeys, and the NICU course for infants born in the periviable stage (defined as 20 weeks 0 days to 25 weeks 6 days) is long. Communication with healthcare providers over the course of this NICU hospitalization is essential to parents' overall understanding of their infant's health; little is known, however, about the communication preferences of families of infants born in this period.

Objective: This study aims to understand the communication preferences of parents of infants born in the periviable period with healthcare providers in the NICU.

Design/Methods: In this qualitative study, we conducted semi-structured interviews with twenty-five parents of infants born in the periviable period who were admitted to a 56-bed, level III NICU from January 2023 - May 2024. Interviews were conducted in English or Spanish in person or via telephone and were then transcribed. Two independent coders conducted a thematic analysis using Atlas.ti.

Results: Twenty-five parents of twenty-one infants participated in the study. Seven parents identified as non-Hispanic Black, one parent as Hispanic Black, four parents as non-Hispanic White, eleven parents as Hispanic White, one parent as non-Hispanic Multiple Races, and one parent did not identify race or ethnicity. Families of eighteen living and three deceased infants participated. Most parents were of infants born between 24 weeks 0 days and 25 weeks 6 days (67%), though parents of infants born between 22 weeks 0 days and 23 weeks 6 days were also represented (33%).
Parents identified several important preferences in communication with healthcare providers, including a desire for medical providers to give anticipatory guidance, to respect parents' desire to maintain hope for their child, to be attuned to the emotional state of families and be empathetic in communication, and to value each individual family's circumstances and experiences in the care of their child (Table 1).

Conclusion(s): Our study provides novel information about the communication preferences of families with infants born in the periviable period. These preferences can be used to inform provider communication practices. For future work, our team integrated these findings to develop a series of communication tools which are being piloted in our NICU.

Table 1. Communication preferences of parents of infants born in the periviable period: themes, subthemes and quotes


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