Yolŋu with Machado Joseph disease: exploring communication strengths and needs

Amery, Rebecca, Wunungmurra, Julie G., Gondarra, Joanne, Gumbula, Farrah, Raghavendra, Parimala, Barker, Ruth, Theodoros, Deborah, Amery, Howard, Massey, Libby, and Lowell, Anne (2020) Yolŋu with Machado Joseph disease: exploring communication strengths and needs. International Journal of Speech-Language Pathology, 22 (5). pp. 499-510.

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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.

Item ID: 60856
Item Type: Article (Research - C1)
ISSN: 1754-9515
Keywords: Aboriginal Australians, dysarthria, augmentative and alternative communication, speech-language pathology, Machado?Joseph disease
Copyright Information: © 2019 The Speech Pathology Association of Australia Limited
Funders: MJD Foundation
Date Deposited: 06 Nov 2019 07:36
FoR Codes: 42 HEALTH SCIENCES > 4201 Allied health and rehabilitation science > 420110 Speech pathology @ 100%
SEO Codes: 21 INDIGENOUS > 2103 Aboriginal and Torres Strait Islander health > 210302 Aboriginal and Torres Strait Islander health status and outcomes @ 100%
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