Yolnu with Machado-Joseph disease: exploring communication strengths and needs.
Loading...
Date
2021-09-20
Journal Title
Journal ISSN
Volume Title
Publisher
Affiliation(s)
(Amery, Lowell) College of Indigenous Futures, Arts and Society, Charles Darwin University, Darwin, Australia
(Wunungmurra, Gondarra, Gumbula, Amery, Massey) MJD Foundation, Darwin, Australia
(Raghavendra) Disability & Community Inclusion, College of Nursing & Health Sciences, Flinders University, Adelaide, Australia
(Barker) College of Healthcare Sciences, James Cook University, Cairns, Australia
(Theodoros) School of Health and Rehabilitation Sciences, University of Queensland, Brisbane, Australia
(Massey) College of Public Health, Medical and Veterinary Sciences, James Cook University, Townsville, Australia
(Wunungmurra, Gondarra, Gumbula, Amery, Massey) MJD Foundation, Darwin, Australia
(Raghavendra) Disability & Community Inclusion, College of Nursing & Health Sciences, Flinders University, Adelaide, Australia
(Barker) College of Healthcare Sciences, James Cook University, Cairns, Australia
(Theodoros) School of Health and Rehabilitation Sciences, University of Queensland, Brisbane, Australia
(Massey) College of Public Health, Medical and Veterinary Sciences, James Cook University, Townsville, Australia
Year
2020
Citation
International Journal of Speech-Language Pathology. Vol.22(5), 2020, pp. 499-510.
Journal
International Journal of Speech-Language Pathology
Conference name
Conference location
Grant information
Abstract
Purpose: Yolnu 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. Yolnu living with progressive dysarthria associated with MJD could benefit from augmentative and alternative communication (AAC). However, there are no aided AAC systems in Yolnu languages. This research aimed to explore the views of Yolnu with MJD about communication, speech-language pathology (SLP) services and AAC. Method(s): A collaborative, culturally responsive research design was informed by Indigenist Research methodology and Constructivist Grounded Theory. Yolnu 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 Yolnu researchers. Result(s): A Yolnu metaphor, Gondhu "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 Yolnu with MJD. Elements of this metaphor include seeking to understand the complex lived experiences of Yolnu with MJD, and working with families to explore the potential benefits of SLP services and AAC. Conclusion(s): Yolnu 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 Yolnu culture and kinship to improve communication opportunities and participation.
PubMed ID
31610129 [https://www.ncbi.nlm.nih.gov/pubmed/?term=31610129]
Type
Article
Study type
Qualitative study
Subjects
Neurology
Speech pathology
Speech pathology