Yolŋu with Machado–Joseph disease: Exploring communication strengths and needs

Yolŋu with Machado–Joseph disease: Exploring communication strengths and needs Journal Article

International Journal of Speech-Language Pathology

• Author(s): Amery, R., Wunungmurra, J. G., Gondarra, J., Gumbula, F., Raghavendra, P., Barker, R., Theodoros, D., Amery, H., Massey, L., Lowell, A.
• Published: 2019
• Publisher: Taylor & Francis
• ISBN: 1754-9507

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Abstract: Purpose: Yolngu are Aboriginal Australians from northeast Arnhem Land in the Northern Territory (NT). Machado-Joseph disease (MJD) prevalence in the NT Aboriginal population is the highest in the world. Yolngu living with progressive dysarthria associated with MJD could benefit from augmentative and alternative communication (AAC). However, there are no aided AAC systems in Yolngu languages. This research aimed to explore the views of Yolngu with MJD about communication, speech-language pathology (SLP) services and AAC.Method: A collaborative, culturally responsive research design was informed by Indigenist Research methodology and Constructivist Grounded Theory. Yolngu with MJD (n=10) and their interested family members (n=4) participated in interviews and created visual representations of their social networks. Data were analysed through an oral interpretive process with Yolngu researchers. Result: A Yolngu metaphor, Gongdhu 'Building understanding by hand', emerged as a culturally meaningful way to represent the core understandings required for speech-language pathologists (SLPs) to work effectively with Yolngu with MJD. Elements of this metaphor include seeking to understand the complex lived experiences of Yolngu with MJD, and working with families to explore the potential benefits of SLP services and AAC.Conclusion: Yolngu with MJD and their families want to work collaboratively with SLPs to develop bilingual AAC systems and culturally responsive SLP services that build on strengths of Yolngu culture and kinship to improve communication opportunities and participation.

• Urls: https://doi.org/10.1080/17549507.2019.1670863
• Keywords: Aboriginal Australians, dysarthria, augmentative and alternative communication, speech-language pathology, Machado-Joseph disease