Haward Marlyse F, Payot Antoine, Feudtner Chris, Janvier Annie
Department of Pediatrics, Children's Hospital at Montefiore, Albert Einstein College of Medicine, Bronx, NY, USA.
Department of Pediatrics, Bureau de l'Éthique Clinique, Université de Montréal, 3175 Chemin Côte-Sainte-Catherine, Montréal, QC H3T 1C5, Canada; Division of Neonatology, Research Center, Clinical Ethics Unit, Palliative Care Unit, Unité de Recherche en Éthique Clinique et Partenariat Famille, CHU Sainte-Justine, Montréal, Canada.
Semin Perinatol. 2022 Mar;46(2):151551. doi: 10.1016/j.semperi.2021.151551. Epub 2021 Nov 11.
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.
与家长的沟通是新生儿护理的重要组成部分。对于孕周小于25周的极早产儿,这一过程因死亡或严重发病的高风险而变得复杂。对于一些具有特定预后因素的婴儿,大多数会死亡。尽管这些死亡中有许多发生在入住重症监护病房之后,但立场声明一直侧重于产前咨询期间的沟通。本综述采用了更全面的方法,涵盖了在三个不同但相互关联的阶段,即产前咨询、新生儿重症监护住院期间以及死亡过程(如果发生)中,临床环境下个性化且以家长为中心的沟通。我们主张,专注于信息标准化的“一刀切”沟通模式并不能促成伙伴关系。有可能对认识并适应家长异质性的个性化方法进行标准化。这有助于临床医生和家长建立起信任和情感支持的有效伙伴关系,以进行个性化决策。这些做法始于临床医生的自我反思,并继续采用支持个性化和以家长为中心沟通的实用框架及逐步方法。