关于新生儿重症监护后的一生之旅的家庭反思:神经多样性,赋能和希望
1Section of Developmental Pediatrics, JP Kennedy Research Center on Intellectual and Neurodevelopmental Disabilities, Comer Children's Hospital, University of Chicago Medicine, 950 East 61st Street Suite 207, Chicago, IL 60637, USA.
Children (Basel, Switzerland)
|February 24, 2024
概括
这个家族就是这个家族.
科学领域:
- 神经发育障碍中的家庭观点
- 生命历程 健康和功能 研究 研究
- 医疗保健系统导航残疾人
背景情况:
- 1969年的一项神经发育障碍诊断带来了重大挑战.
- 这一家庭的旅程凸显了遗传疾病对个人和家庭的影响.
- 早期悲观的预测强调了对支持性护理模型的需求.
研究的目的:
- 从家庭的角度分享神经多样性的一生经验教训.
- 为了说明世界卫生组织国际功能,残疾和健康分类 (WHO-ICF) 模型的应用.
- 识别影响健康,日常运作和社区参与的促进者和障碍.
主要方法:
- 一种定性,以家庭为中心的叙事方法.
- 利用家庭档案和多代人的采访.
- 应用世界卫生组织国际功能,残疾和健康分类 (WHO-ICF) 框架.
主要成果:
- 谈判分散的健康,教育和社区护理系统,产生了发展教训.
- 医生与家长的沟通策略可以得到改进,以促进启用.
- 解决家庭孤立和绝望对于优化结果至关重要.
结论:
- 家庭观点为导航神经多样性提供了宝贵的见解.
- 世卫组织-ICF模型为了解残疾提供了一个全面的框架.
- 加强沟通和支持系统可以改善神经多样性个体及其家庭的生活过程.
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