"然后是沉默":通过父母的情感体验来塑造实践
1CPD Lead, Usher Institute, Edinburgh University, Edinburgh, UK.
Journal of research in nursing : JRN
|January 1, 2024
概括
父母在得知未出生的孩子被诊断为脊柱裂时,经历了重大的情绪. 医疗保健专业人员如何传达这些消息,深深影响了家庭对照顾神经管缺陷儿童的调整.
科学领域:
- 围产期护理 围产期护理
- 发育儿科 发育儿科
- 关于残疾人的研究.
背景情况:
- 脊柱裂是最常见的神经管缺陷 (NTD),通常通过超声波诊断,在受孕后28天左右.
- 护士为被诊断为残疾儿童的家庭提供关键的持续支持,包括因NTD而导致的残疾儿童.
研究的目的:
- 探索和分析父母在被告知未出生的孩子可能患有神经障碍时的情感经历.
- 了解专业沟通在分脊椎产前诊断期间产生的影响.
主要方法:
- 采用参与式视觉叙事方法的定性研究.
- 订婚的父母抚养着被诊断患有脊柱裂的幼儿.
主要成果:
- 父母的叙述揭示了诊断披露带来的重大和持久的情感影响.
- 敏感信息的共享方式显著影响了家庭对照顾残疾儿童的调整.
结论:
- 对于患有脊柱裂的孩子来说,父母的关怀过渡是复杂而漫长的.
- 护士需要意识到"起源故事",以便在这些过渡期间提供有效的支持.
- 将服务与非营利组织整合起来,可以加强以家庭为中心的护理,为患有脊柱裂的儿童提供服务.
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