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Title: Are People with Aphasia (PWA) Involved in the Creation of Quality of Life and Aphasia Impact-Related Questionnaires? A Scoping Review
Authors: Charalambous, Marina 
Kambanaros, Maria 
Annoni, Jean-Marie 
Major Field of Science: Medical and Health Sciences
Field Category: Health Sciences
Keywords: People with aphasia (PWA);Stroke;Patient and public involvement (PPI);Inclusion;Communication impairment
Issue Date: 29-Sep-2020
Source: Brain Sciences, 2020, vol. 10, no. 10, articl. no. 688
Volume: 10
Issue: 10
Journal: Brain Sciences 
Abstract: Background: 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). Methods: 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’. Results: 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. Conclusions: 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.
ISSN: 2076-3425
DOI: 10.3390/brainsci10100688
Rights: Attribution-NonCommercial-NoDerivatives 4.0 International
Type: Article
Affiliation : University of Fribourg 
University of South Australia 
Appears in Collections:Άρθρα/Articles

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