脊柱裂患儿家长的需求

Rachel Joseph
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摘要

摘要脊柱裂(SB)是一种涉及脊柱神经管的先天性缺陷。病情的严重程度取决于缺陷的程度。最严重的SB病例会使人衰弱,并会显著影响出生时患有该缺陷的婴儿的生活质量。SB的并发症包括行动能力问题、矫形畸形、消除障碍、感染、认知迟缓和频繁住院,这些并发症可能贯穿儿童的一生。随着儿童成年,与SB相关的并发症和需求变得非常具体。根据美国疾病控制与预防中心的数据,在美国每年出生的婴儿中,大约每2758个婴儿中就有一个被诊断为SB。得知一个孩子出生时就有先天缺陷,对父母来说可能是毁灭性的。在孩子出生和成长的过程中需要做出几个决定。面对这样的消息,许多父母不知所措,经历了一系列的情绪波动。照顾SB儿童的父母的需求将根据他们对疾病过程的理解、获得资源的能力、支持系统的可用性以及照顾出生时患有这种疾病的儿童时应对挑战的能力而有所不同。护士必须勤奋地探索这些父母群体的需求。本文旨在提高护士对父母需求的认识,以便他们能够支持和帮助父母开发更有效的方法来导航他们的旅程。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Needs of Parents of Children With Spina Bifida
Abstract Spina bifida (SB) is a birth defect involving the neural tube of the spine. The severity of the condition depends on the extent of the defect. The most severe cases of SB are debilitating and can significantly affect the quality of life of babies born with the defect. Complications of SB can include mobility issues, orthopedic abnormalities, elimination impairments, infections, cognitive delays, and frequent hospitalizations, and these can span the lifetime of the child. The complications and needs associated with SB become very specific as the child reaches adulthood. According to the Centers for Disease Control and Prevention, approximately one in every 2,758 babies born annually in the United States are diagnosed with SB. Learning that a child will be born with a birth defect can be devastating for parents. Several decisions need to be made at birth and as the child grows. Many parents facing such news are overwhelmed and experience a range of emotions. The needs of parents caring for children with SB will vary based on their understanding of the disease process, ability to access resources, availability of a support system, and the capacity to cope with the challenges that arise when caring for a child born with this condition. Nurses must be diligent in exploring the needs of this parent population. This article is intended to raise awareness among nurses regarding parental needs so that they can support and assist parents in developing more effective ways to navigate through their journey.
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