青年参与研究:探索神经发育障碍青年的培训需求
Samantha Yimeng Dong1,2, Linda Nguyen2,3, Andrea Cross2,3,4
1Bachelor of Health Sciences Program, McMaster University, Hamilton, ON, Canada.
Research involvement and engagement
|July 10, 2023
概括
这项研究探讨了神经发育障碍 (NDD) 的青年在患者导向研究 (POR) 中合作的培训需求. 结果突出了关键的培训领域和交付方法,以便在POR中有效开展研究人员与青年之间的合作.
科学领域:
- 卫生科学 卫生科学 卫生科学
- 以患者为导向的研究
- 神经发育障碍 神经发育障碍
背景情况:
- 真正的研究者-青年伙伴关系对于有意义的以患者为导向的研究 (POR) 至关重要.
- 在加拿大,对于年轻人,特别是那些有神经发育障碍 (NDD) 的人来说,很少有培训计划参与POR.
- 这项研究探讨了针对性培训的必要性,以赋予年轻人与NDD作为研究合作伙伴的权力.
研究的目的:
- 用NDD探索年轻人 (18-25岁) 的培训需求,以增强他们作为研究合作伙伴的知识,信心和技能.
- 确定在POR方法中让年轻人参与NDD的好处和挑战.
主要方法:
- 一项两阶段的定性研究,涉及对患有NDD的年轻人的个人采访和与焦点小组的虚拟研讨会.
- 协作定性内容分析被用来合成来自青年和研究人员的数据.
- 公众和患者参与评估工具 (PPEET) 和反思性讨论评估了次要目标.
主要成果:
- 拥有NDD的年轻人发现了参与研究的障碍和促进者,并提出了增强其角色的策略.
- 优先培训需求包括研究人员与青年之间的沟通,理解研究角色,并寻找合作机会.
- 参与者强调了青年代表性,学习的通用设计和培训交付中的共同学习. 尽管计划和时间表存在挑战,但YER合作伙伴觉得他们的声音得到了倾听,他们的参与有所作为.
结论:
- 这项研究确定了NDD青年和研究人员的基本培训需求,以促进有意义的POR.
- 调查结果可以为与NDD相关的青年提供可访问的培训机会.
- 通过定制培训加强研究人员与青年之间的伙伴关系对于包容性和有影响力的以患者为导向的研究至关重要.
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