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

Abstract

Purpose: Yolŋu 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. Yolŋu living with progressive dysarthria associated with MJD could benefit from augmentative and alternative communication (AAC). However, there are no aided AAC systems in Yolŋu languages. This research aimed to explore the views of Yolŋu 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. Yolŋu 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 Yolŋu researchers.

Result: A Yolŋu metaphor, Goŋdhu “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 Yolŋu with MJD. Elements of this metaphor include seeking to understand the complex lived experiences of Yolŋu with MJD, and working with families to explore the potential benefits of SLP services and AAC.

Conclusion: Yolŋu 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 Yolŋu culture and kinship to improve communication opportunities and participation.

Keywords:

• Aboriginal Australians
• dysarthria
• augmentative and alternative communication
• speech-language pathology
• Machado–Joseph disease

Declaration of interest

No potential conflict of interest was reported by the authors.

Supplementary material

Supplemental data for this article can be accessed at http://dx.doi.org/10.1080/17549507.2019.1670863

Additional information

Funding

This research was supported by a Research Training Program Scholarship and MJD Foundation Top-Up Scholarship ($19 716 per annum for 3 years paid through CDU). Additional in-kind support for this project was provided by the MJD Foundation including employing Yolŋu researchers, covering travel expenses and a phone/internet allowance.