导航有意义的参与:在基于大脑的残疾研究中与青年和家庭合作的经验教训
Linda Nguyen1,2, Kinga Pozniak3,4, Sonya Strohm3
1School of Physical and Occupational Therapy, Faculty of Medicine and Health Sciences, McGill University, Montreal, QC, Canada. linda.nguyen2@mcgill.ca.
Research involvement and engagement
|February 5, 2024
概括
有意义的患者和家庭参与研究需要明确的期望,评价贡献和灵活性. 本研究分享了在多阶段研究中改善与青少年和年轻成年人合作伙伴关系的经验教训.
科学领域:
- 患者和家庭参与研究的参与.
- 青少年和年轻人的健康
- 基于大脑的残疾 过渡期护理
背景情况:
- 开发了MyREADY TransitionTM应用程序,以支持年轻人 (15-17岁) 脑性残疾过渡到成人护理.
- 建立一个患者和家庭咨询委员会 (PFAC),以青少年,年轻人和护理人员作为研究合作伙伴.
- 解决在研究伙伴关系中实现真实和有意义的参与方面的挑战.
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