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The Challenges of Including Patients With Aphasia in Qualitative Research for Health Service Redesign: Qualitative Interview Study

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Prior, S ORCID: 0000-0001-5782-9141, Miller, A ORCID: 0000-0002-1235-6982, Campbell, S ORCID: 0000-0003-4830-8488, Linegar, K and Peterson, G ORCID: 0000-0002-6764-3882 2020 , 'The Challenges of Including Patients With Aphasia in Qualitative Research for Health Service Redesign: Qualitative Interview Study' , Journal of Participatory Medicine, vol. 12, no. 1 , pp. 1-5 , doi: 10.2196/12336.

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Abstract

Background: Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability toread or write. Aphasia is a frequent complication of stroke and is a major disability for patients and their families. The provisionof services for stroke patients differs across health care providers and regions, and strategies directed at improving these serviceshave benefited from the involvement of patients. However, patients with aphasia are often excluded from these co-design activitiesdue to a diminished capacity to communicate verbally and a lack of health researcher experience in working with patients withaphasia.Objective: The primary aim of this paper is to identify approaches appropriate for working with patients with aphasia in aninterview situation and, more generally, determine the importance of including people with aphasia in health service improvementresearch. The secondary aim is to describe the experiences of researchers involved in interviewing patients with aphasia.Methods: A total of 5 poststroke patients with aphasia participated in face-to-face interviews in their homes to gain insight intotheir in-hospital experience following their stroke. Interviews were audio-recorded, and thematic analysis was performed. Theexperiences of the researchers interviewing these patients were informally recorded postinterview, and themes were derived fromthese reflections.Results: The interview technique utilized in this study was unsuitable to gain rich, qualitative data from patients with aphasia.The experience of researchers performing these interviews suggests that preparation, emotion, and understanding were three ofthe main factors influencing their ability to gather useful experiential information from patients with aphasia. Patients with aphasiaare valuable contributors to qualitative health services research, and researchers need to be flexible and adaptable in their methodsof engagement.Conclusions: Including patients with aphasia in health service redesign research requires the use of nontraditional interviewtechniques. Researchers intending to engage patients with aphasia must devise appropriate strategies and methods to maximizethe contributions and valuable communications of these participants.

Item Type: Article
Authors/Creators:Prior, S and Miller, A and Campbell, S and Linegar, K and Peterson, G
Keywords: stroke; communication; research; qualitative; aphasia; participatory research
Journal or Publication Title: Journal of Participatory Medicine
Publisher: Society for Participatory Medicine
ISSN: 2152-7202
DOI / ID Number: 10.2196/12336
Copyright Information:

Copyright 2020 Sarah Jane Prior, Andrea Miller, Steven Campbell, Karen Linegar, Gregory Peterson. Licensed under Creative Commons Attribution 4.0 International (CC BY 4.0) https://creativecommons.org/licenses/by/4.0/

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