Gadepalli Samir K, Canvasser Jennifer, Eskenazi Yael, Quinn Megan, Kim Jae H, Gephart Sheila M
Section of Pediatric Surgery, Department of Surgery, University of Michigan, Ann Arbor (Dr Gadepalli); NEC Society, Davis, California (Ms Canvasser); College of Nursing, The University of Arizona, Tucson (Mss Eskenazi, Quinn, and Dr. Gephart); and Divisions of Neonatology and Pediatric Gastroenterology, Hepatology and Nutrition, UC San Diego-Rady Children's Hospital of San Diego, California (Dr Kim).
Adv Neonatal Care. 2017 Dec;17(6):489-498. doi: 10.1097/ANC.0000000000000438.
Although partnering with parents is important to improving neonatal outcomes, no studies have investigated what parents are taught, remember, or experience when their child is afflicted with necrotizing enterocolitis (NEC).
To characterize parental perceptions of communication and support they were given about NEC.
An online survey was developed, reviewed for face validity, and then administered to parents whose child had experienced NEC. Quantitative data were analyzed using descriptive statistics, and qualitative data were analyzed using a qualitative descriptive approach.
Parents (N = 110) wanted to know the risk factors and warning signs for NEC and wanted to be told as soon as their child was admitted to the neonatal intensive care unit (NICU). Information provided before diagnosis was felt to be poor by the majority of families, with only 32% feeling satisfied or very satisfied. No parent wrote that they were "scared" by information provided to them about NEC; in fact, parents were dissatisfied when they received "sugar-coated" information. Engaged parents were significantly more satisfied than those who were not informed, had their concerns and suggestions dismissed, or who had to advocate for their baby against clinician opposition (eg, activating the chain of command).
Areas for quality improvement include better communication and collaboration with parents through early engagement in NEC prevention using modalities beyond verbal instruction.
More research is needed on how best to engage parents, especially to engage in prevention, and how doing so affects satisfaction and outcomes.
尽管与家长合作对于改善新生儿结局很重要，但尚无研究调查当孩子患上坏死性小肠结肠炎（NEC）时，家长会学到什么、记住什么或经历什么。
描述家长对所获得的关于NEC的沟通和支持的看法。
设计了一项在线调查，进行了表面效度审查，然后对孩子曾患NEC的家长进行调查。定量数据采用描述性统计分析，定性数据采用定性描述方法分析。
110名家长希望了解NEC的风险因素和警示信号，并希望在孩子被收入新生儿重症监护病房（NICU）后尽快得到通知。大多数家庭认为诊断前提供的信息较差，只有32%的家庭感到满意或非常满意。没有家长写道他们被提供的关于NEC的信息“吓到”；事实上，家长在收到“粉饰”信息时并不满意。积极参与的家长比那些未得到通知、担忧和建议被忽视或不得不反对临床医生的意见为孩子争取权益（如启动指挥系统）的家长满意度显著更高。
质量改进领域包括通过使用言语指导以外的方式尽早参与NEC预防，加强与家长的沟通与合作。
需要更多研究来探讨如何最好地让家长参与进来，特别是参与预防，以及这样做如何影响满意度和结局。
