Publication
Culturally Informed Communication of Neonatal Death in Chinese Neonatal Intensive Care Units
Zhao H, Hu C, Geng J, Wang J, Lu Y, Waidley E, Xu H, Hegarty J, Zhu P · JAMA Network Open · 2026
This qualitative study describes the experiences of physicians and nurses about communicating with parents about neonatal death at 2 neonatal intensive care units (NICUs) in 2 hospitals in Yangzhou City, Jiangsu Province, China. Key Points: Question: What are the experiences of neonatal intensive care unit (NICU) medical staff regarding communicating about neonatal death with parents in China? Findings: In this qualitative study involving 24 NICU physicians and nurses, neonatal deaths were disclosed primarily to fathers, the term death was avoided and metaphors were used in communication with parents, and emotions were restrained. In most instances, the hospital and staff managed newborns' remains to protect families' reputations. Meaning: Findings of this study highlight key areas for improvement such as reducing stigma around neonatal loss, developing culturally sensitive bereavement services, and exploring parental experiences and preferences regarding neonatal death and postmortem care. Importance: Given the uniquely sensitive context of neonatal death in China, neonatal intensive care unit (NICU) clinicians face considerable pressure as they are required to communicate this profound loss to parents in a culturally appropriate manner. Objective: To examine how NICU physicians and nurses communicate with parents about neonatal death, navigate cultural expectations in the process, and manage communication decisions across varied clinical scenarios. Design, Setting, and Participants: This qualitative study used semistructured interviews to collect data and a descriptive phenomenological approach to analyze interview data. The study was conducted with clinicians at 2 NICUs in 2 tertiary care hospitals in Yangzhou City, Jiangsu Province, China. Participants were enrolled through purposeful sampling and included physicians and nurses with prior experience with caring for neonates. Data were collected from September 2024 to May 2025 and were analyzed from October 2024 to June 2025. Main Outcomes and Measures: Experiences of informing families of neonatal death. In-depth, semistructured interviews were conducted at a rate of 1 participant per day and continued until data saturation was achieved. Data were analyzed using the Colaizzi 7-step phenomenological method. Results: A total of 24 individuals (10 physicians and 14 nurses; mean [SD] age, 39.2 [7.5] years; 20 females [83%]) participated in the study. Among participants, 20 (83%) were married with at least 1 child, and the mean (SD) length of service was 16.3 (8.1) years. All participants held a bachelor's degree, were of Han Chinese ethnicity, and had no religious affiliation. Three main themes and 9 subthemes emerged from the interviews. The first theme was that fathers were prioritized over mothers as to whom to make the death disclosure. The subthemes were perceiving the father as the primary family decision-maker, encountering barriers to direct death disclosure to the mother, and being instructed to prioritize death disclosure to the father. The second theme was that death disclosure was handled sensitively, with the explicit term death avoided. Its subthemes were incrementally disclosing bad news, avoiding directly using death-related vocabulary, and using metaphors to explain medical terminology. The third theme was that postdisclosure procedures were handled exclusively in accordance with cultural norms. The subthemes were suppressing personal expressions of grief, being delegated full authority for handling the child's remains, and adjusting disposition arrangements to safeguard familial reputation. Conclusions and Relevance: In this qualitative study of death disclosure, participating NICU medical staff disclosed death with sensitivity to traditional Chinese cultural norms. Insights from their experiences highlight key areas for improvement, including reducing stigma around neonatal death, developing culturally sensitive bereavement services, and exploring parental experiences and preferences.
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