自闭症谱系:父母的观点反映了不同家庭的不同需求
Nadja K Battanta1, Oskar G Jenni1,2,3, Christina Schaefer1
1Child Development Center, University Children's Hospital Zurich, Zurich, Switzerland.
BMC pediatrics
|July 9, 2024
概括
患有自闭症谱系障碍的孩子的父母需要更多的支持. 许多人面临着诊断,日常生活和财务方面的挑战,强调需要更好的护理系统.
科学领域:
- 儿科健康 儿科健康
- 神经发育障碍 神经发育障碍
- 家庭支持系统 家庭支持系统
背景情况:
- 自闭症谱系障碍 (ASD) 为父母带来了重大的护理挑战.
- 定制的早期支持对于自闭症儿童及其家属的福祉至关重要.
- 目前支持系统在满足家长对自闭症照顾需求方面的充分性仍然不清楚.
研究的目的:
- 探索家长对ASD儿童护理,支持和治疗系统的看法.
- 确定ASD儿童家长面临的具体挑战和未满足的需求.
主要方法:
- 在线调查分发给57个父母的孩子与ASD在瑞士.
- 与20名调查参与者进行了半结构面试.
- 定性和定量数据分析,以了解家长的经验.
主要成果:
- 对三分之二的家长来说,漫长而艰难的诊断过程是最大的挑战.
- 60%的家长希望更紧密的诊断后跟踪和更多的支持.
- 只有三分之一的家长认为他们能很好地管理日常生活;许多人报告说,他们感到疲,感到挑战和经济困难.
结论:
- 初级儿科医生应该启动诊断,并评估诊断之外的家庭需求.
- 为所有家长提供支持服务的积极指导,包括财务咨询,至关重要.
- 利用家庭与神经分歧儿童的积极经验可以提高生活质量.
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