Journal article

Are people with aphasia (pwa) involved in the creation of quality of life and aphasia impact-related questionnaires? A scoping review

  • Charalambous, Marina Laboratory of Cognitive and Neurological Sciences, University of Fribourg, CH-1700 Fribourg, Switzerland
  • Kambanaros, Maria Allied Health and Human Performance, University of South Australia, Adelaide SA 5001, Australia
  • Annoni, Jean-Marie Laboratory of Cognitive and Neurological Sciences, University of Fribourg, CH-1700 Fribourg, Switzerland
    29.09.2020
Published in:
  • Brain Sciences. - 2020, vol. 10, no. 10, p. 688
English 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.
Faculty
Faculté des sciences et de médecine
Department
Médecine 3ème année
Language
  • English
Classification
Medicine
License
License undefined
Identifiers
Persistent URL
https://folia.unifr.ch/unifr/documents/309006
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