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家长视角:第一部分——改变新生儿重症监护室文化的考量

Parent Perspectives: Part 1-Considerations for Changing the NICU Culture.

作者信息

DiBari Jessica N, Rouse LaToshia

机构信息

U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau, Rockville, MD 20857, USA.

Certified Doula at Birth Sisters Doula Services and Patient Engagement Consultant, Knightdale, NC 27545, USA.

出版信息

Children (Basel). 2023 Oct 26;10(11):1735. doi: 10.3390/children10111735.

Abstract

While publications that aim to reflect the parent perspective are increasingly common in the medical literature, few are authored by parents in their own words. As mothers with lived and professional experience in the Neonatal Intensive Care Unit (NICU), we believe this perspective is vital to improving health outcomes. We are writing from a life course health development framework that regards health as an active process that develops over time with the integration of physical, social, emotional, and relational components. Health development trajectories are shaped by the family and community ecosystems that surround each child. This means that the child's ability to thrive is strongly linked to the family's health and well-being. These links are not being given sufficient attention in clinical practice. Psychological distress, trauma, and grief are common family experiences in the NICU. Left unaddressed, they can negatively impact parent-child bonding. Drawing on life course principles, we make a series of recommendations for changes to practice to enable NICUs to better serve children and families, and better prepare families for the post-NICU experience. These include setting a positive tone in the NICU, creating a nurturing, personalized environment; addressing the social determinants of health; supporting families to develop a 'growth' mindset; and communicating in an optimistic, positive manner. Building trust is key to ensuring families feel supported and can be promoted through establishing equitable collaborative models of care. Peer support, doulas, and community health worker engagement can facilitate early interactions crucial to the child's developmental progress and family healing.

摘要

虽然旨在反映家长观点的出版物在医学文献中越来越常见,但很少有家长用自己的语言撰写。作为在新生儿重症监护病房(NICU)有亲身经历和专业经验的母亲,我们认为这种观点对于改善健康结果至关重要。我们从生命历程健康发展框架的角度进行阐述,该框架将健康视为一个随着时间推移,通过身体、社会、情感和关系等要素整合而发展的积极过程。健康发展轨迹受到每个孩子周围的家庭和社区生态系统的影响。这意味着孩子茁壮成长的能力与家庭的健康和幸福紧密相连。然而,在临床实践中,这些联系并未得到足够的重视。心理困扰、创伤和悲伤是NICU中常见的家庭经历。如果不加以解决,它们会对亲子关系产生负面影响。借鉴生命历程原则,我们提出了一系列关于改变实践的建议,以使NICU能够更好地服务儿童和家庭,并帮助家庭更好地为离开NICU后的经历做好准备。这些建议包括在NICU营造积极的氛围,创造一个滋养、个性化的环境;解决健康的社会决定因素;支持家庭培养“成长型”思维模式;以乐观、积极的方式进行沟通。建立信任是确保家庭感到得到支持并通过建立公平的协作护理模式得到促进的关键。同伴支持、导乐服务以及社区卫生工作者的参与可以促进对孩子的发育进程和家庭康复至关重要的早期互动。

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