Are People with Aphasia (PWA) Involved in the Creation of Quality of Life and Aphasia Impact-Related Questionnaires? A Scoping Review
Journal
Brain Sciences
Date Issued
September 29, 2020
DOI
10.3390/brainsci10100688
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.
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.
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