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Missing methods and epistemic injustice: a scoping review of qualitative research with AAC users.

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Title: Missing methods and epistemic injustice: a scoping review of qualitative research with AAC users.
Authors: Keane, Ally, Kocsis, Joanna
Source: Disability & Society; Sep2025, Vol. 40 Issue 9, p2564-2587, 24p
Subject Terms: HEALTH self-care, COMMUNICATIVE competence, FACILITATED communication, SOCIAL justice, COMMUNICATIVE disorders, SYSTEMATIC reviews, COMMUNICATION, THEORY of knowledge, COMMUNICATION devices for people with disabilities, TIME, PEOPLE with disabilities, ERIC (Information retrieval system), PSYCHOLOGY information storage & retrieval systems
Abstract: Users of Augmentative and Alternative Communication (AAC) have been historically left out of research. Within knowledge production, we see a prioritisation of the spoken voice in a hierarchy that at worst excludes, and at best subjugates, mediated voices. This scoping review sought studies involving AAC users as research participants, to identify practical lessons that could help inform data collection strategies to address this gap. We identified several common logistical and ethical considerations, organising them into three -overarching themes that require additional attention from researchers working with AAC users, specifically: timescales, communication partners, and personal agency. In documenting that AAC-friendly methods are missing from the literature, we relocate the problem of AAC users' exclusion from qualitative research from the inability of individuals with complex communication needs to participate in research, to individual and institutional inability or unwillingness to design and fund data collection practices that suit the needs of AAC users. Points of interest: A search for English-language studies documenting the involvement of AAC users in qualitative research produced only 32 articles, highlighting the dearth of published research that includes this group. Common logistical concerns discussed by these scholars centre on the different timescales on which AAC users operate, highlighting the need for AAC-specific research designs and adaptive institutional structures to support them. Scholars also highlighted both the value and tension of involving communication partners, or proxies, in interviews with AAC users, identifying an epistemological dilemma that requires further attention. Ethical concerns about the impact of research design on the personal agency of AAC users were also common to many of the studies reviewed, indicating a need for dedicated focus on epistemic justice when working with AAC users. [ABSTRACT FROM AUTHOR]
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Database: Complementary Index
Description
Abstract:Users of Augmentative and Alternative Communication (AAC) have been historically left out of research. Within knowledge production, we see a prioritisation of the spoken voice in a hierarchy that at worst excludes, and at best subjugates, mediated voices. This scoping review sought studies involving AAC users as research participants, to identify practical lessons that could help inform data collection strategies to address this gap. We identified several common logistical and ethical considerations, organising them into three -overarching themes that require additional attention from researchers working with AAC users, specifically: timescales, communication partners, and personal agency. In documenting that AAC-friendly methods are missing from the literature, we relocate the problem of AAC users' exclusion from qualitative research from the inability of individuals with complex communication needs to participate in research, to individual and institutional inability or unwillingness to design and fund data collection practices that suit the needs of AAC users. Points of interest: A search for English-language studies documenting the involvement of AAC users in qualitative research produced only 32 articles, highlighting the dearth of published research that includes this group. Common logistical concerns discussed by these scholars centre on the different timescales on which AAC users operate, highlighting the need for AAC-specific research designs and adaptive institutional structures to support them. Scholars also highlighted both the value and tension of involving communication partners, or proxies, in interviews with AAC users, identifying an epistemological dilemma that requires further attention. Ethical concerns about the impact of research design on the personal agency of AAC users were also common to many of the studies reviewed, indicating a need for dedicated focus on epistemic justice when working with AAC users. [ABSTRACT FROM AUTHOR]
ISSN:09687599
DOI:10.1080/09687599.2025.2458005