简要报告:护理人员对收到研究总结报告的积极看法 在自闭症的纵向研究中
Elysa Eliopulos1, Laura de la Roche2, Yun-Ju Chen3,4
1Department of Health Research Methods, Evidence, and Impact, McMaster University, Hamilton, ON, Canada. elysaelio@gmail.com.
Journal of autism and developmental disorders
|November 9, 2024
概括
自闭症儿童的照顾者发现研究报告是有益的,改善了他们对孩子需求的理解,并促进了与专业人员的沟通. 参与者更喜欢收到这些个性化的研究摘要.
科学领域:
- 儿科研究的研究.
- 自闭症谱系障碍研究研究
- 让患者参与到研究中.
背景情况:
- 研究参与往往强调未来的好处,忽视了直接参与者的优势.
- 了解参与者对接收个人研究数据的态度尚未得到充分探索.
- 儿科自闭症研究队列 (PARC) 研究为护理人员提供了个性化的进展报告.
研究的目的:
- 在自闭症研究中检查护理人员对研究总结报告的看法.
- 评估个人化数据反对参与者的实用性和影响.
- 为参与者参与和在研究中共享数据提供最佳实践信息.
主要方法:
- 开发了一个在线问卷以评估PARC研究研究总结报告的使用情况.
- 收到研究报告的39名参与者填写了问卷.
- 用描述性分析来评估反应.
主要成果:
- 大多数参与者报告说,他们对自闭症的知识增加了,他们对孩子的需求的管理得到了改善.
- 报告促进了与专业人士就干预和教育目标进行对话.
- 参与者表示他们更愿意收到这些研究总结报告.
结论:
- 自闭症研究参与者对收到研究总结报告有积极的看法.
- 个性化的反报告增强了参与者的知识,并支持了专业合作.
- 提供研究数据摘要可以赋予参与者权力,并改善研究经验.
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