TY - JOUR
T1 - Including People Who Use Augmentative and Alternative Communication in Qualitative Research
T2 - Can You Hear Us?
AU - Walsh, Megan
AU - Harman, Izzi
AU - Manning, Penny
AU - Ponza, Brenton
AU - Wong, Shirley
AU - Shaw, Brodie
AU - Sellwood, Darryl
AU - Anderson, Kate
AU - Reddihough, Dinah
AU - Wallen, Margaret
PY - 2024
Y1 - 2024
N2 - People who use augmentative and alternative communication (AAC) are frequently excluded from research, yet their voices can significantly enhance the applicability, acceptability, and translation of qualitative research findings. Accessible and adapted research methods welcome and empower participants who use AAC, and enable meaningful involvement. In this article, we describe the collaborative development of a framework to conceptualise inclusive research and aspects of an accompanying inclusive research toolkit. The framework identifies balancing power as a critical factor, primarily achieved by ensuring that research methods and materials are accessible to people who use AAC. We propose that this is achieved through three interacting elements: collaboration with AAC users, skills and knowledge to achieve accessibility, and ensuring adequate time is available to achieve involvement. We identify five areas where applying these elements has impact for AAC users: recruiting AAC users, working with communication supporters, adapting research methods, securing ethics approval, and consent. In presenting the framework, we demonstrate how qualitative researchers can foster a research environment that values and actively includes AAC users, ultimately advancing the field towards more comprehensive and inclusive research practices. While our work is situated in the cerebral palsy and AAC communities, our proposed framework and toolkit can be applied by researchers seeking perspectives from individuals with communication disabilities more broadly. We have created a corresponding plain language video of this article as an additional means of optimising accessibility of the content.
AB - People who use augmentative and alternative communication (AAC) are frequently excluded from research, yet their voices can significantly enhance the applicability, acceptability, and translation of qualitative research findings. Accessible and adapted research methods welcome and empower participants who use AAC, and enable meaningful involvement. In this article, we describe the collaborative development of a framework to conceptualise inclusive research and aspects of an accompanying inclusive research toolkit. The framework identifies balancing power as a critical factor, primarily achieved by ensuring that research methods and materials are accessible to people who use AAC. We propose that this is achieved through three interacting elements: collaboration with AAC users, skills and knowledge to achieve accessibility, and ensuring adequate time is available to achieve involvement. We identify five areas where applying these elements has impact for AAC users: recruiting AAC users, working with communication supporters, adapting research methods, securing ethics approval, and consent. In presenting the framework, we demonstrate how qualitative researchers can foster a research environment that values and actively includes AAC users, ultimately advancing the field towards more comprehensive and inclusive research practices. While our work is situated in the cerebral palsy and AAC communities, our proposed framework and toolkit can be applied by researchers seeking perspectives from individuals with communication disabilities more broadly. We have created a corresponding plain language video of this article as an additional means of optimising accessibility of the content.
KW - augmentative and alternative communication users
KW - complex communication needs
KW - consumer involvement
KW - inclusive research
UR - http://www.scopus.com/inward/record.url?scp=85185671079&partnerID=8YFLogxK
UR - http://purl.org/au-research/grants/NHMRC/1171758
U2 - 10.1177/16094069241234190
DO - 10.1177/16094069241234190
M3 - Article
AN - SCOPUS:85185671079
SN - 1609-4069
VL - 23
SP - 1
EP - 13
JO - International Journal of Qualitative Methods
JF - International Journal of Qualitative Methods
ER -