Lowitja Institute:: Browsing by Author "Lowell A."

Browsing by Author "Lowell A."

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A flow that comes when we're talking: water metaphors for exploring intercultural communication during early childhood assessment interactions in a Yolnu (First Nations Australian) community.
Armstrong E.; Maypilama L.; Bukulatjpi Y.; Gapany D.; Fasoli L.; Ireland S.; Baker R.D.; Hewat S.; Lowell A.; Yolnu
Culture mediates how all people think and communicate and intercultural communication skills are required for effective collaboration. This study (2017-2021) explored intercultural communication with 40 participants in one very remote First Nations Australian community in Northern Australia. We explored the perspectives of both Yolnu (First Nations Australian people from North-East Arnhem Land) and Balanda (non-Indigenous people, in this case Australian) on interactions during early childhood assessments of Yolnu children (0-6 years). Our intercultural research team used a culturally responsive form of video-reflexive ethnography, a Yolnu approach to in-depth discussion and collaborative analysis. In this article, we explore nine intercultural communication processes that were recognized and enacted by study participants. Each process is represented by a metaphor drawn from water traveling in North-East Arnhem Land. We share these processes so that others may consider exploring their relevance in other intercultural communication contexts. (PsycInfo Database Record (c) 2024 APA, all rights reserved)
Feasibility and impact of a physical activity and lifestyle program for Aboriginal families with Machado-Joseph Disease in the Top End of Australia.
(2024-08-08) Carr J.; Lalara J.; Lalara G.; Daniels B.; Clough A.; Lowell A.; Barker R.N.
Introduction: Physical activity and lifestyle programs are scarce for people with hereditary ataxias and neurodegenerative diseases. Aboriginal families in the Top End of Australia who have lived with Machado-Joseph disease (MJD) for generations co-designed a physical activity and lifestyle program called the Staying Strong Toolbox. The aim of the present study was to explore feasibility and impact of the program on walking and moving around. Method(s): A mixed-methods, multiple case study design was used to pilot the Staying Strong Toolbox. Eight individuals with MJD participated in the program for 4 weeks. Participants tailored their own program using the Toolbox workbook. Families, support workers and researchers facilitated each individual's program. Feasibility was determined through program participation, adherence, coinciding or serious adverse events, participant acceptability and cost. Impact was determined through measures of mobility, ataxia, steps, quality of life, wellbeing and goal attainment, assessed before and after the program. Result(s): All participants completed the program, averaging five activity sessions per week, 66 minutes per session, of walking (63.5%), strengthening/balance-based activities (16%), cycling (11.4%) and activities of daily living, cultural and lifestyle activities (10.5%). Seven participants were assessed on all measures on three occasions (baseline, pre-program and post-program), while one participant could not complete post-program measures due to ceremonial responsibilities. All had significant improvements in mobility, steps taken and ataxia severity (p<0.05) after the program. Quality of life and wellbeing were maintained. Conclusion(s): The program helped participants remain 'strong on the inside and outside'. Participants recommended implementation in 4-week blocks and for the program to be shared internationally. The Staying Strong Toolbox program was feasible for families with MJD. The program had a positive impact on walking and moving around, with participants feeling stronger on the outside (physically) and inside (emotionally, spiritually, psychosocially). The program could be adapted for use by other families with MJD. Copyright © (2024), (James Cook University). All rights reserved.
"From your own thinking you can't help us": intercultural collaboration to address inequities in services for Indigenous Australians in response to the world report on disability.
(2013-07-01) Lowell A.
Inequity in service provision for Indigenous Australians with communication disability is an issue requiring urgent attention. In the lead article, Wylie, McAllister, Davidson, and Marshall (2013) note that, even in the relatively affluent Minority World, including Australia, equity in service provision for people with communication disability has not been achieved. In remote communities in the Northern Territory (NT) almost all residents speak a language other than English as their primary language. However, there are no speech-language pathologists (SLPs) in the NT who speak an Indigenous language or who share their cultural background. Specific data on the prevalence of communication disability in this population are unavailable due to a range of factors. The disability data that are available, for example, demonstrating the high level of conductive hearing loss, indicates that the risk of communication disability in this population is particularly high. Change is urgently needed to address current inequities in both availability of, and access to, culturally responsive services for Indigenous people with communication disability. Such change must engage Indigenous people in a collaborative process that recognizes their expertise in identifying both their needs and the most effective form of response to these needs.
"Hiding the story": Indigenous consumer concerns about communication related to chronic disease in one remote region of Australia.
(2012-09-18) Lowell A.; Maypilama E.; Yikaniwuy S.; Rrapa E.; Williams R.; Dunn S.
This paper reports on a collaborative qualitative study which explored education and communication practice related to chronic disease from the perspectives of Aboriginal people in a remote region of the Northern Territory, Australia, where the prevalence of chronic disease is extremely high. Most Yolngu (Aboriginal people of Northeast Arnhem Land) do not speak English as their first language and few health staff share the language and cultural background of their clients. Semi-structured interviews were conducted with Yolngu community members and health staff in their preferred language in small groups or individually, in an approach that was flexible and responsive to the concerns and priorities of Yolngu researchers and participants. As well, health education interactions were videotaped to facilitate more in-depth understanding of the strengths and challenges in communication (one video can be viewed at http://informahealthcare.com/doi/abs/10.3109/17549507.2012.663791). An iterative and collaborative process of analysis, interpretation, and verification revealed that communication and education related to chronic disease is highly ineffective, restricting the extent to which Yolngu can make informed decisions in managing their health. Yolngu participants consistently stated that they wanted a detailed and direct explanation about causes and management of chronic disease from health staff, and rarely believed this had been provided, sometimes assuming that information about their health is deliberately withheld. These serious limitations in communication and education have extensive negative consequences for individuals, their families, and health services. These findings also have broader relevance to all areas of healthcare, including allied health services, which share similar challenges in achieving effective communication. Without addressing the profound and pervasive inadequacies in communication, other interventions designed to close the gap in Indigenous health are unlikely to succeed.
How do Yolnu recognise and understand their children's learning? Nhaltjan nuli ga yolnuy nhama ga marr-dharanan djamarrkuliw marngithinyawuy?
Armstrong E.; Maypilama L.; Fasoli L.; Guyula A.; Yunupinu M.; Garrutju J.; Gundjarranbuy R.; Gapany D.; Godwin-Thompson J.; Lowell A.; Yolnu
Indigenous families have culturally-specific strengths, priorities, and methods for assessing their children's development. Recognition and support of children's and families' strengths are important for identity, health and wellbeing. However, strengths can be missed in assessment processes developed in non-Indigenous contexts. Yolnu are First Nations Australian peoples from North-East Arnhem Land. This study was conducted to explore Yolnu early childhood development, assessment and support in response to concerns that Yolnu strengths and priorities are often not recognised. The cultural and linguistic expertise of Yolnu researchers was central in this qualitative study. Rich empirical data were collected through a form of video reflexive ethnography with six children and their extended families over seven years and through in-depth interviews with 38 other community members. An iterative process of data collection and analysis engaged Yolnu families and researchers in a collaborative, culturally responsive research process which drew on constructivist grounded theory methods. Findings illustrate how Yolnu children are immersed in complex layers of intertwined and continuous testing and teaching processes integrating holistic frameworks of cultural identity and connection, knowledge and practices. Yolnu families monitor and recognise a child's development through both direct and explicit testing and through observing children closely so that children can be supported to keep learning and growing into their knowledge, strengths and identity. Yolnu expressed concern that such learning is invisible when the child is viewed through non-Yolnu lenses and assessed with processes and tools from outside the community. Indigenous peoples have a right to culturally congruent assessment of their children. Those who share the child's culture and language have the expertise to ensure that cultural strengths and priorities are recognised and understood. (PsycInfo Database Record (c) 2022 APA, all rights reserved)
Sharing the true stories: improving communication between Aboriginal patients and healthcare workers.
(2002-06-11) Cass A.; Lowell A.; Christie M.; Snelling P.L.; Flack M.; Marrnganyin B.; Brown I.
Objectives: To identify factors limiting the effectiveness of communication between Aboriginal patients with end-stage renal disease and healthcare workers, and to identify strategies for improving communication. Design(s): Qualitative study, gathering data through (a) videotaped interactions between patients and staff, and (b) in-depth interviews with all participants, in their first language, about their perceptions of the interaction, their interpretation of the video record and their broader experience with intercultural communication. Setting(s): A satellite dialysis unit in suburban Darwin, Northern Territory. The interactions occurred between March and July 2001. Participant(s): Aboriginal patients from the Yolngu language group of north-east Arnhem Land and their medical, nursing and allied professional carers. Main Outcome Measure(s): Factors influencing the quality of communication. Result(s): A shared understanding of key concepts was rarely achieved. Miscommunication often went unrecognised. Sources of miscommunication included lack of patient control over the language, timing, content and circumstances of interactions; differing modes of discourse; dominance of biomedical knowledge and marginalisation of Yolngu knowledge; absence of opportunities and resources to construct a body of shared understanding; cultural and linguistic distance; lack of staff training in intercultural communication; and lack of involvement of trained interpreters. Conclusion(s): Miscommunication is pervasive. Trained interpreters provide only a partial solution. Fundamental change is required for Aboriginal patients to have significant input into the management of their illness. Educational resources are needed to facilitate a shared understanding, not only of renal physiology, disease and treatment, but also of the cultural, social and economic dimensions of the illness experience of Aboriginal people.
'Staying strong on the inside and outside' to keep walking and moving around: perspectives from Aboriginal people with Machado Joseph Disease and their families from the Groote Eylandt Archipelago, Australia.
(2019-03-20) Carr J.J.; Lalara J.; Lalara G.; O'Hare G.; Massey L.; Kenny N.; Pope K.E.; Clough A.R.; Lowell A.; Barker R.N.; Warnumamalya
Machado Joseph Disease (MJD) (spinocerebellar ataxia 3) is a hereditary neurodegenerative disease causing progressive ataxia and loss of mobility. It is the most common spinocerebellar ataxia worldwide. Among Aboriginal families of Groote Eylandt and related communities across Australia's Top End, MJD is estimated to be more prevalent than anywhere else in the world. This study explored lived experiences of individuals and families with MJD to determine what is important and what works best to keep walking and moving around. A collaborative qualitative exploratory study, drawing from constructivist grounded theory methods, was undertaken for data collection and analysis. Semi-structured in-depth interviews were conducted with individuals with MJD (n = 8) and their family members (n = 4) from the Groote Eylandt Archipelago where ~1500 Aboriginal people (Warnumamalya) live. Interviews were led by Warnumamalya community research partners in participants' preferred language(s). Participants described their experience of living with MJD, from 'knowing about MJD', 'protecting yourself from MJD' and 'adjusting to life with MJD'. While the specific importance of walking and moving around differed widely between participants, all perceived that walking and moving around enabled them to do what mattered most to them in life. 'Staying strong on the inside and outside' (physically, mentally, emotionally, spiritually) was perceived to work best to keep walking and moving around as long as possible. A framework that included personal and environmental strategies for staying strong emerged: 'Exercising your body', 'having something important to do', 'keeping yourself happy', 'searching for good medicine', 'families helping each other' and 'going country'. This study, the first to explore lived experiences of MJD in Australia, highlights the importance of maintaining mobility as long as possible. Strategies perceived to work best address physical and psychosocial needs in an integrated manner. Services supporting families with MJD need flexibility to provide individualised, responsive and holistic care.Copyright © 2019 Carr et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
The 'invisible homeless' - challenges faced by families bringing up their children in a remote Australian Aboriginal community.
(2019-02-20) Lowell A.; Maypilama L.; Fasoli L.; Guyula Y.; Guyula A.; Yunupiengu M.; Godwin-Thompson J.; Gundjarranbuy R.; Armstrong E.; Garrutju J.; McEldowney R.; Yolnu
Background: Insufficient and inadequate housing remain serious and enduring problems in remote Aboriginal communities in the Northern Territory (NT) of Australia. Housing is recognised as a key determinant of persisting inequities between Aboriginal and other Australians in health, as well as education and employment outcomes which in turn impact on health. In our qualitative study exploring strengths and challenges related to early childhood in a remote NT community, insufficient housing emerged as the greatest challenge families experience in 'growing up' their children. Methods: The "Growing up children in two worlds" study engaged Yolnu (Aboriginal) and other researchers in a culturally responsive qualitative research process. Methods included video ethnography and in-depth interviews with six case study families as well as participant observation and interviews with a wide range of other community members. Data collection and analysis occurred through an iterative and collaborative process and the findings related to housing are the focus of this article. Results: Concerns about crowded and insecure housing were pervasive in the study community where many families are, in effect, homeless. Most rely on extended family to provide accommodation and some never find a secure and stable space in which to bring up their children. Absence of control over their living conditions is a key element underlying many of the sources of distress associated with crowded housing. The lack of food security, sharing sickness and disturbances in the night affecting sleep are just some of the challenges that generate conflict between family members and impact on health, wellbeing, work and school attendance. Although interaction with other family members is highly valued, the ambition of most participants is for independent and secure accommodation in which they can safely 'grow up' their children. Conclusions: Yolnu who live with the consequences of crowded and insecure housing want their voices to be heard. They best understand the challenges they face and their perspectives must inform the solutions. Equitable access to housing through sufficient and sustained investment in an integrated approach, engaging all stakeholders, is needed. This is essential to address persisting inequities between Aboriginal and non-Aboriginal Australians in health and other outcomes.
What is the best way to keep walking and moving around for individuals with Machado-Joseph disease? A scoping review through the lens of Aboriginal families with Machado-Joseph disease in the Top End of Australia.
(2019-10-17) Carr J.J.; Lalara J.; Lalara G.; Smith M.; Quaill J.; Clough A.R.; Lowell A.; Barker R.N.
Objectives: Machado-Joseph disease (MJD) is the most common spinocerebellar ataxia worldwide. Prevalence is highest in affected remote Aboriginal communities of the Top End of Australia. Aboriginal families with MJD from Groote Eylandt believe 'staying strong on the inside and outside' works best to keep them walking and moving around, in accordance with six key domains that form the 'Staying Strong' Framework. The aim of this current study was to review the literature to: (1) map the range of interventions/strategies that have been explored to promote walking and moving around (functional mobility) for individuals with MJD and; (2) align these interventions to the 'Staying Strong' Framework described by Aboriginal families with MJD. Design(s): Scoping review. Data sources: Searches were conducted in July 2018 in MEDLINE, EMBASE, CINAHL, PsychINFO and Cochrane Databases. Eligibility criteria for selecting studies: Peer-reviewed studies that (1) included adolescents/adults with MJD, (2) explored the effects of any intervention on mobility and (3) included a measure of mobility, function and/or ataxia were included in the review. Result(s): Thirty studies were included. Few studies involved participants with MJD alone (12/30). Most studies explored interventions that aligned with two 'Staying Strong' Framework domains, 'exercising your body' (n=13) and 'searching for good medicine' (n=17). Few studies aligned with the domains having 'something important to do' (n=2) or 'keeping yourself happy' (n=2). No studies aligned with the domains 'going country' or 'families helping each other'. Conclusion(s): Evidence for interventions to promote mobility that align with the 'Staying Strong' Framework were focused on staying strong on the outside (physically) with little reflection on staying strong on the inside (emotionally, mentally and spiritually). Findings suggest future research is required to investigate the benefits of lifestyle activity programmes that address both physical and psychosocial well-being for families with MJD.Copyright © 2019 Author(s) (or their employer(s)).
Yolnu with Machado-Joseph disease: exploring communication strengths and needs.
(2021-09-20) Amery R.; Wunungmurra J.G.; Gondarra J.; Gumbula F.; Raghavendra P.; Barker R.; Theodoros D.; Amery H.; Massey L.; Lowell A.; Yolnu
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.

Browsing by Author "Lowell A."

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