Roles and Experiences of Parents in Necrotizing Enterocolitis: An International Survey of Parental Perspectives of Communication in the NICU
Roles and Experiences of Parents in Necrotizing Enterocolitis: An International Survey of Parental Perspectives of Communication in the NICU
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DOI：
10.1097/anc.0000000000000438
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发表时间：
2017-12-01
影响因子：
1.7
通讯作者：
Gephart, Sheila M.
中科院分区：
文献类型：
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作者：
Gadepalli, Samir K.;Canvasser, Jennifer;Gephart, Sheila M.
背景资料：虽然与父母的合作是重要的，以改善新生儿的结果，没有研究调查父母的教导，记住，或经验，当他们的孩子患有坏死性小肠结肠炎（NEC）.Purpose：为了表征父母的沟通和支持的看法，他们得到了约NEC.Methods：开发了一个在线调查，审查的表面效度，然后管理的父母，他们的孩子经历了NEC。定量数据进行了分析，使用描述性统计，定性数据进行了分析，使用定性描述性approach.Findings：父母（N = 110）想知道NEC的危险因素和警告信号，并希望尽快被告知他们的孩子被送进新生儿重症监护室（NICU）。大多数家庭认为诊断前提供的信息很差，只有32%的家庭感到满意或非常满意。没有一个家长写信说他们被提供给他们的关于NEC的信息吓到了;事实上，当他们收到糖衣信息时，家长们都不满意。与那些没有被告知、他们的担忧和建议被驳回或不得不反对临床医生的反对而为他们的婴儿辩护的父母相比，（例如，激活指挥链）.实践的意义：质量改进的领域包括更好的沟通和合作，通过早期参与NEC预防使用口头指令以外的方式与家长.需要更多的研究如何最好地让父母参与，特别是参与预防，以及这样做如何影响满意度和结果。
Background: 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).Purpose: To characterize parental perceptions of communication and support they were given about NEC.Methods: 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.Findings: 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).Implications for Practice: Areas for quality improvement include better communication and collaboration with parents through early engagement in NEC prevention using modalities beyond verbal instruction.Implications for Research: More research is needed on how best to engage parents, especially to engage in prevention, and how doing so affects satisfaction and outcomes.