Kirova Anna-Mariya, Jakab Tyler, Bartsch Graham, Corazzini Stephanie, Sokoloff Alexis, Delahunty Erin, Seymour Rachel, Rubenstein Eric
School of Public Health, Boston University, Boston, MA, USA.
Special Olympics Massachusetts, Marlborough, MA, USA.
Res Involv Engagem. 2023 Jun 19;9(1):44. doi: 10.1186/s40900-023-00450-5.
Individuals with intellectual and developmental disabilities are often the subject of research while rarely being included in formulating research questions, planning studies, and making decisions related to protocols and analyses. In turn, most research regarding people with intellectual and developmental disabilities is not carried out by researchers with disabilities themselves. We developed a co-research training program where individuals with intellectual and developmental disabilities were taught about research. The program was designed using best practices and existing materials resources. We recruited four participants from Special Olympics Massachusetts and conducted the training in the Fall of 2021. We evaluated the program with surveys, qualitative interviews, and tracking continued involvement of co-researchers in research projects. Participants were partners in the evaluation process. The training program was six sessions and included lessons about why research is important, how to conduct research, and an experiential learning project where co-researchers conducted a study of their coaches. The program was well received by participants, and one year later they were still involved with research projects. A co-researcher training focused on public health for Special Olympics athletes is feasible and beneficial for athletes, researchers, and Special Olympics programs. However, there are still barriers like a lack of funding and time, that need to be addressed to ensure wide program success.
智力和发育障碍者常常是研究对象,但他们很少参与研究问题的制定、研究规划以及与方案和分析相关的决策。相应地,大多数关于智力和发育障碍者的研究并非由残疾研究人员自己开展。我们开发了一个共同研究培训项目,向智力和发育障碍者传授研究知识。该项目是利用最佳实践和现有材料资源设计的。我们从马萨诸塞州特奥会招募了四名参与者,并于2021年秋季进行了培训。我们通过调查、定性访谈以及追踪共同研究人员在研究项目中的持续参与情况来评估该项目。参与者是评估过程中的合作伙伴。培训项目共六节课,内容包括研究为何重要、如何开展研究,以及一个共同研究人员对其教练进行研究的体验式学习项目。该项目受到了参与者的好评,一年后他们仍参与研究项目。针对特奥会运动员的以公共卫生为重点的共同研究人员培训对运动员、研究人员和特奥会项目而言是可行且有益的。然而,仍存在资金和时间短缺等障碍,需要加以解决以确保项目广泛成功。