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The challenges of including patients with aphasia in qualitative research for health service redesign: Qualitative interview study


Prior, S and Miller, A and Campbell, S and Linegar, K and Peterson, G, The challenges of including patients with aphasia in qualitative research for health service redesign: Qualitative interview study, Journal of Participatory Medicine, 12, (1) pp. 1-5. ISSN 2152-7202 (2020) [Refereed Article]


Copyright Statement

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)

DOI: doi:10.2196/12336


Background: Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is a frequent complication of stroke and is a major disability for patients and their families. The provision of services for stroke patients differs across health care providers and regions, and strategies directed at improving these services have benefited from the involvement of patients. However, patients with aphasia are often excluded from these co-design activities due to a diminished capacity to communicate verbally and a lack of health researcher experience in working with patients with aphasia.

Objective: The primary aim of this paper is to identify approaches appropriate for working with patients with aphasia in an interview situation and, more generally, determine the importance of including people with aphasia in health service improvement research. 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 into their in-hospital experience following their stroke. Interviews were audio-recorded, and thematic analysis was performed. The experiences of the researchers interviewing these patients were informally recorded postinterview, and themes were derived from these 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 of the main factors influencing their ability to gather useful experiential information from patients with aphasia. Patients with aphasia are valuable contributors to qualitative health services research, and researchers need to be flexible and adaptable in their methods of engagement.

Conclusions: Including patients with aphasia in health service redesign research requires the use of nontraditional interview techniques. Researchers intending to engage patients with aphasia must devise appropriate strategies and methods to maximize the contributions and valuable communications of these participants.

Item Details

Item Type:Refereed Article
Keywords:stroke, communication, research, qualitative, aphasia, participatory research
Research Division:Health Sciences
Research Group:Health services and systems
Research Field:Health and community services
Objective Division:Health
Objective Group:Evaluation of health and support services
Objective Field:Evaluation of health and support services not elsewhere classified
UTAS Author:Prior, S (Dr Sarah Prior)
UTAS Author:Miller, A (Ms Andrea Miller)
UTAS Author:Campbell, S (Professor Steven Campbell)
UTAS Author:Peterson, G (Professor Gregory Peterson)
ID Code:137305
Year Published:2020
Deposited By:Medicine
Deposited On:2020-02-08
Last Modified:2021-02-01
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