Joshi Divya, Hill Nayo, Hruby Alexandra, Viswanathan Shreya, Ingo Carson, Roth Heidi, Sukal-Moulton Theresa
Department of Physical Therapy & Human Movement Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL; Department of Biomedical Engineering, Northwestern University, Evanston, IL.
Department of Physical Therapy & Human Movement Sciences, Feinberg School of Medicine, Northwestern University, Chicago, IL; Department of Bioengineering, University of Pennsylvania, Philadelphia, PA.
Arch Phys Med Rehabil. 2021 Aug;102(8):1547-1555. doi: 10.1016/j.apmr.2021.02.017. Epub 2021 Mar 10.
To investigate the effect of the coronavirus disease 2019 (COVID-19) pandemic on perspectives toward participation in cerebral palsy (CP) research.
An online survey with questions relating to the comfort levels of research participation was filled out by people who had CP or had a child with CP.
The online survey was administered through Research Electronic Data Capture platform.
A total of 233 (n=233) individuals with CP (42.5%; n=99) or with a child with CP (57.1%; n=133) consented and at least partially completed the online survey (n=210 complete; n=23 partially complete). All participants resided in the United States.
Not applicable.
Readiness to participate was analyzed in the context of the time point for research participation during COVID-19 and whether or not the study offered direct benefits to participants.
Participants were consistently willing to participate sooner in studies that offered direct benefit than in those that did not. Adults responding for themselves had sooner time points for studies without direct benefit compared with parents answering for a child (P=.030). Gross Motor Function Classification System level, but not age or CP type, affected the time point for studies without direct benefit (P=.017). Personal values influenced selected time point for studies without direct benefit (P=.007), whereas environmental factors affected the time point for studies with direct benefit (P=.002). Local COVID-19 incidence rates were not associated with time points for either research type; however, respondents expected precautions to be taken if they chose to participate.
As the pandemic evolves, researchers should consider the perspectives of potential participants as well as ethical and safety factors when reinitiating in-person CP research.
探讨2019冠状病毒病（COVID-19）大流行对参与脑瘫（CP）研究观点的影响。
一项在线调查，由患有CP或子女患有CP的人填写与研究参与舒适度相关的问题。
在线调查通过研究电子数据采集平台进行。
共有233名（n = 233）患有CP的个体（42.5%；n = 99）或子女患有CP的个体（57.1%；n = 133）同意并至少部分完成了在线调查（n = 210人完整完成；n = 23人部分完成）。所有参与者居住在美国。
不适用。
在COVID-19期间研究参与的时间点背景下，以及研究是否为参与者提供直接益处的情况下，分析参与意愿。
与未提供直接益处的研究相比，参与者始终更愿意更快参与提供直接益处的研究。为自己作答的成年人参与无直接益处研究的时间点比为孩子作答的父母更早（P = 0.030）。粗大运动功能分类系统水平而非年龄或CP类型影响无直接益处研究的时间点（P = 0.017）。个人价值观影响无直接益处研究的选定时间点（P = 0.007），而环境因素影响有直接益处研究的时间点（P = 0.002）。当地COVID-19发病率与两种研究类型的时间点均无关联；然而，受访者期望如果他们选择参与，应采取预防措施。
随着大流行的发展，研究人员在重新开展面对面的CP研究时，应考虑潜在参与者的观点以及伦理和安全因素。
