Charalambous Marina, Kambanaros Maria, Annoni Jean-Marie
Laboratory of Cognitive and Neurological Sciences, University of Fribourg, CH-1700 Fribourg, Switzerland.
Allied Health and Human Performance, University of South Australia, Adelaide SA 5001, Australia.
Brain Sci. 2020 Sep 29;10(10):688. doi: 10.3390/brainsci10100688.
Quality of Life (QoL) questionnaires are used to describe the impact of aphasia on stroke survivors' life. People with aphasia (PWA) are traditionally excluded from research, potentially leading to a mismatch between the factors chosen in the tools and the realistic needs of PWA. The purpose of this review was to determine the direct involvement of PWA in the creation of QoL and aphasia impact-related questionnaires (AIR-Qs).
A scoping review methodology was conducted by an expert librarian and two independent reviewers on health sciences based on the Preferred Reporting Items for Systematic Reviews and Metanalyses extension for Scoping Reviews (PRISMA-ScR) protocol, through a literature search in five databases: Medline Complete, PubMed, PsychINFO, Scopus, and Google Scholar. Search terms included 'stroke', 'people with aphasia', 'communication', 'well-being', and 'quality of life'.
Of 952 results, 20 studies met the eligibility criteria. Of these, only four AIR-Qs studies (20%) were found reporting the direct involvement of PWA, while no QoL tools did so. Evidence showed involvement in the creation phase of AIR-Q, mainly in a consultation role.
There is an absence of a framework for conducting and reporting the involvement of PWA in qualitative participatory research studies, which limits effectiveness to promote equitable best practice in aphasia rehabilitation.
生活质量（QoL）问卷用于描述失语症对中风幸存者生活的影响。传统上，失语症患者（PWA）被排除在研究之外，这可能导致工具中选择的因素与PWA的实际需求不匹配。本综述的目的是确定PWA在生活质量和失语症影响相关问卷（AIR-Qs）创建过程中的直接参与情况。
一位专业图书馆员和两位独立的健康科学领域评审员根据系统评价和Meta分析扩展的范围综述首选报告项目（PRISMA-ScR）协议，采用范围综述方法，通过在五个数据库中进行文献检索：Medline Complete、PubMed、PsychINFO、Scopus和谷歌学术。检索词包括“中风”、“失语症患者”、“沟通”、“幸福感”和“生活质量”。
在952条结果中，有20项研究符合纳入标准。其中，只有四项AIR-Qs研究（20%）报告了PWA的直接参与情况，而没有生活质量工具报告这一点。有证据表明PWA参与了AIR-Q的创建阶段，主要是担任咨询角色。
缺乏一个用于开展和报告PWA参与定性参与性研究的框架，这限制了在失语症康复中推广公平最佳实践的有效性。
