Personalized communication with parents of children born at less than 25 weeks: Moving from doctor-driven to parent-personalized discussions

• Published in: Seminars in perinatology Vol. 46; no. 2; p. 151551
• Main Authors: Haward, Marlyse F., Payot, Antoine, Feudtner, Chris, Janvier, Annie
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.03.2022
• Subjects: bonding; Child; Communication; coping; decision making; disability; emotions; ethics; etiquette; Female; guilt; hope; Humans; Infant; Infant, Extremely Premature; Infant, Newborn; informed consent; Intensive Care Units, Neonatal; Intensive Care, Neonatal; mortality; NICU; parent centered care; parental perspectives; parenthood; parents; Parents - psychology; personalized decision making; Pregnancy; prematurity; resuscitation; shared decision making; stakeholders; trust; values; trust; prematurity; disability; values; NICU; stakeholders; ethics; hope; shared decision making; informed consent; resuscitation; GA; communication; coping; guilt; emotions; parent centered care; etiquette; parenthood; bonding; personalized decision making; decision making; mortality; parental perspectives; parents
• ISSN: 0146-0005; 1558-075X
• DOI: 10.1016/j.semperi.2021.151551

Communication with parents is an essential component of neonatal care. For extremely preterm infants born at less than 25 weeks, this process is complicated by the substantial risk of mortality or major morbidity. For some babies with specific prognostic factors, the majority die. Although many of these deaths occur after admission to the intensive care unit, position statements have focused on communication during the prenatal consultation. This review takes a more comprehensive approach and covers personalized and parent-centered communication in the clinical setting during three distinct yet inter-related phases: the antenatal consultation, the neonatal intensive care hospitalization, and the dying process (when this happens). We advocate that a ‘one-size-fits-all’ communication model focused on standardizing information does not lead to partnerships. It is possible to standardize personalized approaches that recognize and adapt to parental heterogeneity. This can help clinicians and parents build effective partnerships of trust and affective support to engage in personalized decision-making. These practices begin with self-reflection on the part of the clinician and continue with practical frameworks and stepwise approaches supporting personalization and parent-centered communication.