RESUMO
YolÅu (Aboriginal Australians of northeast Arnhem Land) are interested in developing augmentative and alternative communication (AAC) systems in their own languages to support communication opportunities and participation for their family members living with Machado-Joseph disease. Designing AAC systems in Aboriginal languages requires consideration of unique linguistic and cultural elements. Participatory action research in strength-based communication contexts was carried out by YolÅu and Balanda (the YolÅu word for non-Aboriginal people) researchers working together through a collaborative intercultural process. Culturally responsive literacy, language, and AAC activities were used to develop four prototype YolÅu AAC sytems for YolÅu with varied literacy skills. Data were coded using gerunds to identify and focus on action in the data. Reflective and analytical collaborative, oral group discussions were used to identify key considerations and, ultimately, a YolÅu metaphor for the research. YolÅu language, culture and worldview impacted all aspects of prototype design and decision making. Salient considerations related to representation, organization, layout, and access, are presented. Clinical implications and future research considerations are outlined.
Assuntos
Auxiliares de Comunicação para Pessoas com Deficiência , Transtornos da Comunicação , Humanos , Vocabulário , Povos Aborígenes Australianos e Ilhéus do Estreito de Torres , Austrália , ComunicaçãoRESUMO
YolÅu, Aboriginal people from Arnhem Land, Australia are at risk of Machado-Joseph disease, with progressive loss of speech. YolÅu are interested in developing augmentative and alternative communication (AAC) systems in their own languages. This research aimed to develop a culturally responsive process to explore and create a core vocabulary word list for YolÅu adults living with the disease for inclusion in AAC system prototypes. A list of 243 YolÅu words and morphemes was created. In this highly collaborative, mixed methods, participatory action research, Balanda (the YolÅu word for non-Aboriginal people) and YolÅu researchers conducted cycles of transcription and analysis of a language sample, with oral group discussions to identify which words to include, omit, or add, based on YolÅu perceptions of the structure and use of their languages. A YolÅu metaphor, Gulaka-buma ("Harvesting yams"), was identified by YolÅu researchers to represent and share the research process and findings. Three key themes were identified that summarize the main cultural and linguistic considerations related to changes made to the core vocabulary. Study findings emphasized the role of language as an expression of culture and identity for Indigenous peoples and the importance of considering cultural and linguistic factors in selecting vocabulary for AAC systems.
Assuntos
Auxiliares de Comunicação para Pessoas com Deficiência , Transtornos da Comunicação , Adulto , Humanos , Austrália , Povos Aborígenes Australianos e Ilhéus do Estreito de Torres , Idioma , VocabulárioRESUMO
INTRODUCTION: Access to augmentative and alternative communication (AAC) systems in languages other than English and multilingual AAC systems remains limited for many people with complex communication needs, despite a growing interest in this field, and an acknowledged need for culturally responsive AAC practice. PURPOSE: The purpose of this scoping review was to identify published research that has reported on the development of components or whole AAC systems in languages other than English, and the linguistic and cultural factors that influenced research methods and AAC system development. METHOD: Nine databases were systematically searched for published research that presented development of components or whole AAC systems in languages other than English. The Mixed Methods Appraisal Tool was used to assess the quality of studies. Charted data from studies included journal and publication date, research team, language of AAC system, aims of the study, study methodologies, study participants, and type of AAC systems developed. An analytical framework was developed to identify the cultural and linguistic factors that influenced research methods and or AAC system outcomes. RESULTS: A total of 22 studies were included (13 qualitative, one quantitative nonrandomized, six quantitative descriptive, and two mixed-methods studies). Overall quality of studies was high. Some qualitative studies were of lower quality due to limited analysis or interpretation of results. Linguistic factors were extensively reported in the existing literature, whereas cultural factors were rarely explicitly reported. CONCLUSION: Factors contributing to lack of reporting of cultural considerations are posited with suggestions for future research. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.21482607.
Assuntos
Auxiliares de Comunicação para Pessoas com Deficiência , Transtornos da Comunicação , Multilinguismo , Humanos , Transtornos da Comunicação/diagnóstico , Transtornos da Comunicação/terapia , Idioma , ComunicaçãoRESUMO
Purpose: YolÅu 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. YolÅu living with progressive dysarthria associated with MJD could benefit from augmentative and alternative communication (AAC). However, there are no aided AAC systems in YolÅu languages. This research aimed to explore the views of YolÅu 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. YolÅu 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 YolÅu researchers.Result: A YolÅu metaphor, GoÅdhu "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 YolÅu with MJD. Elements of this metaphor include seeking to understand the complex lived experiences of YolÅu with MJD, and working with families to explore the potential benefits of SLP services and AAC.Conclusion: YolÅu 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 YolÅu culture and kinship to improve communication opportunities and participation.