Lemmon Monica E, Donohue Pamela K, Parkinson Charlamaine, Northington Frances J, Boss Renee D
Department of Neurology, Division of Pediatric Neurology, Department of Pediatrics, Division of Pediatric Neurology, Duke University Medical Center, Durham, North Carolina; Neurosciences Intensive Care Nursery, The Johns Hopkins Hospital, Baltimore, Maryland; and
Department of Pediatrics, Division of Neonatology, and Department of Population, Family, and Reproductive Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland.
Pediatrics. 2016 Sep;138(3). doi: 10.1542/peds.2016-1234. Epub 2016 Aug 3.
Families must process complex information related to neonatal encephalopathy and therapeutic hypothermia.
In this mixed methods study, semi-structured interviews were performed with parents whose infants were enrolled in an existing longitudinal cohort study of therapeutic hypothermia between 2011 and 2014.
Thematic saturation was achieved after 20 interviews. Parental experience of communicating with clinicians was characterized by 3 principle themes. Theme 1 highlighted that a fragmented communication process mirrored the chaotic maternal and neonatal course. Parents often received key information about neonatal encephalopathy and therapeutic hypothermia from maternal clinicians. Infant medical information was often given to 1 family member (60%), who felt burdened by the responsibility to relay that information to others. Families universally valued the role of the bedside nurse, who was perceived as the primary source of communication for most (75%) families. Theme 2 encompassed the challenges of discussing the complex therapy of therapeutic hypothermia: families appreciated clinicians who used lay language and provided written material, and they often felt overwhelmed by technical information that made it hard to understand the "big picture" of their infant's medical course. Theme 3 involved the uncertain prognosis after neonatal encephalopathy. Parents appreciated specific expectations about their infant's long-term development, and experienced long-term distress about prognostic uncertainty.
Communicating complex and large volumes of information in the midst of perinatal crisis presents inherent challenges for both clinicians and families. We identified an actionable set of communication challenges that can be addressed with targeted interventions.
家庭必须处理与新生儿脑病和治疗性低温相关的复杂信息。
在这项混合方法研究中，对其婴儿参与了2011年至2014年一项现有治疗性低温纵向队列研究的父母进行了半结构化访谈。
在进行20次访谈后实现了主题饱和。父母与临床医生沟通的经历具有3个主要主题。主题1强调，碎片化的沟通过程反映了混乱的母婴病程。父母通常从产科临床医生那里获得有关新生儿脑病和治疗性低温的关键信息。婴儿的医疗信息通常只告知一名家庭成员（60%），该成员觉得将信息转告给其他人的责任很重。所有家庭都重视床边护士的作用，大多数家庭（75%）认为床边护士是主要的沟通来源。主题2包括讨论治疗性低温复杂疗法的挑战：家庭赞赏使用通俗易懂语言并提供书面材料的临床医生，他们常常被技术信息弄得不知所措，难以理解婴儿医疗过程的“全貌”。主题3涉及新生儿脑病后的预后不确定性。父母赞赏对其婴儿长期发育的具体期望，并对预后不确定性感到长期苦恼。
在围产期危机中传达复杂且大量的信息对临床医生和家庭都构成了固有挑战。我们确定了一系列可通过有针对性的干预措施加以解决的可操作的沟通挑战。
