College of Education, University of South Florida, Tampa, Florida.
Semin Speech Lang. 2022 Nov;43(5):426-444. doi: 10.1055/s-0042-1756644. Epub 2022 Oct 26.
Researcher-initiated research often has little or no input from the groups who will be affected by the results of the research. The aim of this project was to describe practices of embracing patient-partners (i.e., individuals with aphasia and spouses/family members) in research. Six webinars were developed for both researchers and patient-partners that were required prior to participating in a joint conference that focused on collaborative research teams. The conference was designed based on an appreciative inquiry approach. Including patient-partners into research priorities and planning has been accomplished across various health domains in the United States, but this was the first organized national effort, in the United States, to support the inclusion of people with aphasia and their families as active partners in the research process. Consequently, it is hoped that future aphasia researchers also include patient-partner teams into their research process for more ecologically valid outcomes.
研究者发起的研究通常很少或没有来自受研究结果影响的群体的投入。本项目的目的是描述在研究中接纳患者伙伴(即患有失语症的个体及其配偶/家庭成员)的做法。为研究人员和患者伙伴制定了六个网络研讨会,要求他们在参加专注于合作研究团队的联合会议之前参加。该会议是基于欣赏式探究方法设计的。在美国,各个健康领域都已经将患者伙伴纳入研究重点和规划中,但这是美国首次有组织的全国性努力,旨在支持将患有失语症的人和他们的家人作为积极的合作伙伴纳入研究过程。因此,希望未来的失语症研究人员也将患者伙伴团队纳入他们的研究过程,以获得更具生态有效性的结果。