Parents' needs and perceived gaps in communication with healthcare professionals in the neonatal (intensive) care unit: A qualitative interview study

Abstract Objective To explore parents’ needs and perceived gaps concerning communication with healthcare professionals during their preterm infants’ admission to the neonatal (intensive) care unit (NICU) after birth. Methods Semi-structured, retrospective interviews with 20 parents of preterm infants (March 2020), admitted to a Dutch NICU (level 2–4) minimally one week, one to five years prior. The interview guide was developed using Epstein and Street’s Framework for Patient-Centered Communication. Online interviews were audio-taped and transcribed verbatim. Deductive and inductive thematic analysis was performed by two independent coders. Results Communication needs and gaps emerged across four main functions of NICU communication: Building/maintaining relationships, exchanging information, (sharing) decision-making, and enabling parent self-management. Communication gaps included: lack of supportive physician communication, disregard of parents’ views and agreements, missing communication about decisions, and the absence of written (discharge) information. Conclusion This study improves our understanding and conceptualization of adequate NICU communication by revealing persisting gaps in parent-provider interaction. Also, this study provides a steppingstone for further integration of parents as equal partners in neonatal care and communication. Practice implications The results are relevant to practitioners in the field of neonatal and pediatric care, providing suggestions for tangible improvements in NICU care in the Netherlands and beyond.