Why surveys are 'very hard': exploring challenges and insights for collection of authentic patient experience information with speakers of Australian First Nations languages.

INTRODUCTION: Health services collect patient experience data to monitor, evaluate and improve services and subsequently health outcomes. Obtaining authentic patient experience information to inform improvements relies on the quality of data collection processes and the responsiveness of these processes to the cultural and linguistic needs of diverse populations. This study explores the challenges and considerations in collecting authentic patient experience information through survey methods with Australians who primarily speak First Nations languages. METHODS: First Nations language experts, interpreters, health staff and researchers with expertise in intercultural communication engaged in an iterative process of critical review of two survey tools using qualitative methods. These included a collaborative process of repeated translation and back translation of survey items and collaborative analysis of video-recorded trial administration of surveys with languages experts (who were also receiving dialysis treatment) and survey administrators. All research activities were audio- or video-recorded, and data from all sources were translated, transcribed and inductively analysed to identify key elements influencing acceptability and relevance of both survey process and items as well as translatability. RESULTS: Serious challenges in achieving equivalence of meaning between English and translated versions of survey items were pervasive. Translatability of original survey items was extensively compromised by the use of metaphors specific to the cultural context within which surveys were developed, English words that are familiar but used with different meaning, English terms with no equivalent in First Nations languages and grammatical discordance between languages. Discordance between survey methods and First Nations cultural protocols and preferences for seeking and sharing information was also important: the lack of opportunity to share the 'full story', discomfort with direct questions and communication protocols that preclude negative or critical responses constrained the authenticity of the information obtained through survey methods. These limitations have serious implications for the quality of information collected and result in frustration and distress for those engaging with the survey. CONCLUSION: Profound implications for the acceptability of a survey tool as well as data quality arise from differences between First Nations cultural and communication contexts and the cultural context within which survey methods have evolved. When data collection processes are not linguistically and culturally congruent there is a risk that patient experience data are inaccurate, miss what is important to First Nations patients and have limited utility for informing relevant healthcare improvement. Engagement of First Nations cultural and language experts is essential in all stages of development, implementation and evaluation of culturally safe and effective approaches to support speakers of First Nations languages to share their experiences of health care and influence change.

Clinical yarning education: development and pilot evaluation of an education program to improve clinical communication in Aboriginal health care - participant, and health manager perspectives.

BACKGROUND: Effective communication between health care clinicians and Aboriginal patients is critical to delivering high quality, accessible, culturally secure health care. Despite this, ineffective communication is a well-documented barrier, and few studies have reported interventions to improve communication. Clinical Yarning is a patient centred communication framework for Aboriginal health care. Building on this framework, this study reports the development and evaluation of a Clinical Yarning education program. METHODS: A Clinical Yarning education program was developed, underpinned by the principles of cultural security and adult learning, informed by a behavioural skills approach. The program was delivered in five health/education settings in one rural Western Australian region. Mixed-methods evaluation included a retrospective pre/post questionnaire to ascertain changes in participants' knowledge, confidence, competence and their perceptions about communication in Aboriginal health care, and the program. Qualitative semi-structured interviews were undertaken with health service managers who oversaw each health care setting and who had not participated in the education program, to explore perceptions about the program and implementation considerations. RESULTS: Twenty-eight health care clinicians and six students completed training and the evaluation survey. There were significant improvements in self-rated communication skills, ability, confidence, knowledge, and perceived importance of communication training from pre to post-program. Participants strongly recommended the program to others, and most commonly valued the simulation/interactive learning activities. Health service managers acknowledged the limitations in most existing cultural training, and felt Clinical Yarning addressed a need; both the concept of Clinical Yarning and the education program provided were valued. Considerations identified for future implementation included: building multilevel partnerships within health services, offering alternate training options such as eLearning or train-the-trainer approaches, and integrating into existing development programs. Workforce transiency and availability were a barrier, particularly in remote areas. CONCLUSIONS: This study offers preliminary support for the Clinical Yarning education program and provides a foundation for further development of this training approach. A future priority is implementation research to investigate the impact of the Clinical Yarning education program on health care and patient outcomes.

An emerging framework for digital mental health design with Indigenous young people: a scoping review of the involvement of Indigenous young people in the design and evaluation of digital mental health interventions.

BACKGROUND: Indigenous young people worldwide possess unique protective factors that support wellbeing. However, they experience mental illness at higher rates than their non-indigenous counterparts. Digital mental health (dMH) resources can increase access to structured, timely, and culturally tailored mental health interventions by reducing structural and attitudinal barriers to accessing treatment. The involvement of Indigenous young people in dMH resource development is recommended, however, no guidelines exist on how this can best be facilitated. METHODS: A scoping review examining processes to involve Indigenous young people in developing or evaluating dMH interventions was conducted. Studies reported between 1990 and 2023 involving Indigenous young people aged 12-24 years, originating from Canada, the USA, New Zealand, and Australia, in the development or evaluation of dMH interventions were eligible for inclusion. Following a three-step search process, four electronic databases were searched. Data were extracted, synthesized, and described under three categories: dMH intervention attributes, study design, and alignment with research best practice. Best practice recommendations for Indigenous research and participatory design principles derived from the literature were identified and synthesised. Included studies were assessed against these recommendations. Consultation with two Senior Indigenous Research Officers ensured Indigenous worldviews informed analysis. RESULTS: Twenty-four studies describing eleven dMH interventions met inclusion criteria. Studies included formative, design, pilot, and efficacy studies. Overall, most included studies demonstrated a high degree of Indigenous governance, capacity building, and community benefit. All studies adapted their research processes to ensure that local community protocols were followed and most aligned these within an Indigenous research paradigm. Formal agreements regarding existing and created intellectual property and implementation evaluations were rare. Outcomes were the primary focus of reporting, with limited detailed descriptions of governance and decision-making processes or strategies for managing predictable tensions between co-design stakeholders. CONCLUSIONS: This study identified recommendations for undertaking participatory design with Indigenous young people and evaluated the current literature against these criteria. Common gaps were evident in the reporting of study processes. Consistent, in-depth reporting is needed to allow assessment of approaches for this hard-to-reach population. An emergent framework, informed by our findings, for guiding the involvement of Indigenous young people in the design and evaluation of dMH tools is presented. TRIAL REGISTRATION: Available via osf.io/2nkc6.

Improving outcomes for hospitalised First Nations peoples though greater cultural safety and better communication: the Communicate Study Partnership study protocol.

BACKGROUND: The Communicate Study is a partnership project which aims to transform the culture of healthcare systems to achieve excellence in culturally safe care for First Nations people. It responds to the ongoing impact of colonisation which results in First Nations peoples experiencing adverse outcomes of hospitalisation in Australia's Northern Territory. In this setting, the majority of healthcare users are First Nations peoples, but the majority of healthcare providers are not. Our hypotheses are that strategies to ensure cultural safety can be effectively taught, systems can become culturally safe and that the provision of culturally safe healthcare in first languages will improve experiences and outcomes of hospitalisation. METHODS: We will implement a multicomponent intervention at three hospitals over 4 years. The main intervention components are as follows: cultural safety training called 'Ask the Specialist Plus' which incorporates a locally developed, purpose-built podcast, developing a community of practice in cultural safety and improving access to and uptake of Aboriginal language interpreters. Intervention components are informed by the 'behaviour change wheel' and address a supply-demand model for interpreters. The philosophical underpinnings are critical race theory, Freirean pedagogy and cultural safety. There are co-primary qualitative and quantitative outcome measures: cultural safety, as experienced by First Nations peoples at participating hospitals, and proportion of admitted First Nations patients who self-discharge. Qualitative measures of patient and provider experience, and patient-provider interactions, will be examined through interviews and observational data. Quantitative outcomes (documentation of language, uptake of interpreters (booked and completed), proportion of admissions ending in self-discharge, unplanned readmission, hospital length of stay, costs and cost benefits of interpreter use) will be measured using time-series analysis. Continuous quality improvement will use data in a participatory way to motivate change. Programme evaluation will assess Reach, Effectiveness, Adoption, Implementation and Maintenance ('RE-AIM'). DISCUSSION: The intervention components are innovative, sustainable and have been successfully piloted. Refinement and scale-up through this project have the potential to transform First Nations patients' experiences of care and health outcomes. TRIAL REGISTRATION: Registered with ClinicalTrials.gov Protocol Record 2008644.

Developing Augmentative and Alternative Communication Systems in Languages Other Than English: A Scoping Review.

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.

Designing augmentative and alternative communication systems with Aboriginal Australians: vocabulary representation, layout, and access.

Yolŋu (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 Yolŋu and Balanda (the Yolŋu 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 Yolŋu AAC sytems for Yolŋu 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 Yolŋu metaphor for the research. Yolŋu 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.

How do Yolŋu recognise and understand their children's learning? Nhaltjan ŋuli ga Yolŋuy nhäma ga märr-dharaŋan djamarrkuliw marŋgithinyawuy?

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. Yolŋu are First Nations Australian peoples from North-East Arnhem Land. This study was conducted to explore Yolŋu early childhood development, assessment and support in response to concerns that Yolŋu strengths and priorities are often not recognised. The cultural and linguistic expertise of Yolŋu 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 Yolŋu families and researchers in a collaborative, culturally responsive research process which drew on constructivist grounded theory methods. Findings illustrate how Yolŋu 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. Yolŋu 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. Yolŋu expressed concern that such learning is invisible when the child is viewed through non-Yolŋu 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.

Räl-manapanmirr ga dhä-manapanmirr - Collaborating and connecting: Creating an educational process and multimedia resources to facilitate intercultural communication.

Purpose: Yolŋu (First Nations Australians from North-East Arnhem Land, Northern Territory) and Balanda (non-Indigenous people) often encounter communication challenges at a cultural interface during the provision of health and education services. To address these challenges, our project co-created an educational process and resources to inform and facilitate intercultural communication. During interactive workshops, participants and researchers from different cultural backgrounds reflected on their communication practice together in small groups. Reflection and discussion during the workshops were supported by multi-media resources designed to be accessible and resonant for both Yolŋu and Balanda partners. Participants explored and implemented strategies during intercultural engagement within and beyond the workshop. In this article we explain our processes of co-creating intercultural communication education and share features of our educational process and resources that resonated with participants from both cultural groups.Method: Our intercultural team of researchers used a culturally-responsive approach to Participatory Action Research (PAR) to co-create an intercultural communication workshop and multi-media resources collaboratively with 52 Yolŋu and Balanda end-users.Result: Collaborating (the power and value of genuine collaboration and engagement throughout the process) and connecting (the meeting and valuing of multiple knowledges, languages and modes of expression) were key elements of both our methods and findings. Our processes co-created accessible, inclusive, collaborative spaces in which researchers and participants were actively supported to implement intercultural communication processes as they learned about them.Conclusion: Our work may have relevance for others who are developing educational processes and resources for facilitating intercultural communication in ways that honour participants' voices, challenge inaccessible systems, resonate with diverse audiences and create opportunities for research translation.Explanation of terms• Yolŋu are First Nations Australians from North-East Arnhem Land in the Northern Territory of Australia.• Balanda is a term used by speakers of Yolŋu languages to refer to non-Indigenous people.• First Nations Australians is used to include diverse Aboriginal and Torres Strait Islander peoples in Australia. This term recognises the identities of First Nations peoples who hold unceded sovereignty over their lands and waters.• The pronouns we, us and our are used to refer to the intercultural research team who are also authors (i.e. Emily, Gapany, Läwurrpa, Yuŋgirrŋa and supervisors Anne, Lyn and Sarah). When sharing other people's perspectives, or the voices of individual researchers, the text will specify whose voice is being shared.

Determining Priorities in the Aboriginal and Islander Mental Health Initiative for Youth App Second Phase Participatory Design Project: Qualitative Study and Narrative Literature Review.

BACKGROUND: Digital mental health tools can promote access to culturally safe early intervention mental health services for Aboriginal and Torres Strait Islander young people. Participatory design methodology facilitates user engagement in the co-design of digital resources. However, several challenges have been identified that limit the methodological rigor of this approach. OBJECTIVE: This paper aims to present an in-depth account of the second phase of participatory design in the development of the Aboriginal and Islander Mental Health Initiative for Youth (AIMhi-Y) app. METHODS: A first idea storyboard, generated from a formative phase of the AIMhi-Y project, was refined through a series of youth co-design workshops and meetings. A narrative review of the literature, 6 service provider interviews, and engagement with an expert reference group also informed the design process. Generative design activities, storyboarding, discussions, and voting strategies were used. RESULTS: The participatory design process identified the app features preferred by young people and service providers and assessed their alignment with current recommendations from the scientific literature. Findings from the co-design process are presented across 9 app characteristic domains. Integration of findings into app design proved complex. Although most preferred features identified by young people were included to some degree, other inclusions were restricted by budget, time, and the need to integrate best practice recommendations. A process of prioritization was required. CONCLUSIONS: Participatory design is often cited in the development of digital mental health resources; however, methods are diverse and often lack detailed descriptions. This study reports the outcomes and strategies used to determine priorities in the second phase of the development of the AIMhi-Y app. We provide an example and the key learnings to inform others seeking to use participatory design with a similar cohort.

Bakmaranhawuy - the broken connection. Perspectives on asking and answering questions with Yolŋu patients in healthcare contexts.

INTRODUCTION: Questioning is a key method in general information-seeking behaviour and teaching used by the dominant culture in Australia. Within an Australian health context the fundamental diagnostic tool used by medical staff is the biomedical interview or history taking, which is based on a battery of direct questions. Similarly, many health professionals rely on patient questions to prompt the sharing of information, or to make them aware of gaps in communication. This is problematic for many First Nations peoples, including Yolηu (First Nations people of North-East Arnhem Land), who are culturally less inclined to use direct questioning as it is deemed impolite within their cultural context. METHODS: Semi-structured conversational interviews using culturally congruent communication processes were conducted with participants in their preferred language. Interviews were translated, transcribed and analysed inductively using NVivo v12. RESULTS: A total of 30 participants were interviewed (10 health staff and 20 Yolηu with recent experience in engaging with health services). All participating health staff believed that questioning was essential for determining how to best treat patients but many felt that questions created problems for some Yolηu patients. They also felt that Yolηu patients ask fewer questions related to their health issues than patients of other cultures. Yolηu participants conveyed overwhelmingly negative experiences with the health system and at the tertiary hospital in particular. Yolηu participants described feelings of frustration, fear and trauma when talking of their experiences, and these feelings were often direct outcomes of poor communication with staff. Regarding the use of questions in health care specifically, Yolηu participants identified four key and interrelated conditions within which questioning was deemed an acceptable communication mechanism. Dhämanapan (connection) was identified as an essential condition for effective communication between health staff and patients. This connection was established and maintained through a shared understanding of matha (language), dukmaram (Yolηu understandings of healing) and djuηuny (Yolηu norms of polite communication). Strategies for overcoming barriers to effective communication related to the concept of dhuwurr (skill) in health communication, which could increase the acceptability of health staff asking questions of Yolηu and the confidence of Yolηu patients in asking questions of health staff. CONCLUSION: The findings from this study indicate a fundamental disconnect between the current health system and the needs of the Yolηu patients it seeks to serve. In order for this to change, Yolηu patients and health staff need to develop dhuwurr in health communication, which incorporates the four key conditions for effective communication identified in this study. To achieve this, ongoing and mandatory intercultural communication training for health staff is needed, just as mandatory training is required for hygiene and resuscitation training. Intercultural communication training must be comprehensive - reflecting the complexity involved in developing this dhuwurr - and sustained, for example with ongoing support from cultural communication mentors.

Augmentative and alternative communication for Aboriginal Australians: Developing core vocabulary for Yolŋu speakers.

Yolŋu, Aboriginal people from Arnhem Land, Australia are at risk of Machado-Joseph disease, with progressive loss of speech. Yolŋu 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 Yolŋu adults living with the disease for inclusion in AAC system prototypes. A list of 243 Yolŋu words and morphemes was created. In this highly collaborative, mixed methods, participatory action research, Balanda (the Yolŋu word for non-Aboriginal people) and Yolŋu 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 Yolŋu perceptions of the structure and use of their languages. A Yolŋu metaphor, Gulaka-buma ("Harvesting yams"), was identified by Yolŋu 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.

A call for action that cannot go to voicemail: Research activism to urgently improve Indigenous perinatal health and wellbeing.

In this call to action, a coalition of Indigenous and non-Indigenous researchers from Australia, Aotearoa New Zealand, United States and Canada argue for the urgent need for adequately funded Indigenous-led solutions to perinatal health inequities for Indigenous families in well-resourced settler-colonial countries. Authors describe examples of successful community-driven programs making a difference and call on all peoples to support and resource Indigenous-led perinatal health services by providing practical actions for individuals and different groups.

Involvement of Indigenous young people in the design and evaluation of digital mental health interventions: a scoping review protocol.

BACKGROUND: Indigenous young people worldwide are at greater risk of developing mental health concerns due to ongoing inequity and disadvantage. Digital mental health (dMH) interventions are identified as a potential approach to improving access to mental health treatment for Indigenous youth. Although involvement in the development and evaluation of dMH resources is widely recommended, there is limited evidence to guide engagement of Indigenous young people in these processes. This scoping review aims to examine the methods used to involve Indigenous young people in the development or evaluation of dMH interventions. METHODS: Articles published in English, involving Indigenous young people (aged 10-24 years) in the development or evaluation of dMH interventions, originating from Australia, New Zealand, Canada and the USA will be eligible for inclusion. PubMed, Scopus and EBSCOhost databases (Academic Search Premiere, Computer and Applied Science complete, CINAHL, MEDLINE, APA PsychArticles, Psychology and Behavioural Sciences collection, APA PsychInfo) will be searched to identify eligible articles (from January 1990 onwards). Infomit and Google Scholar (limited to 200 results) will be searched for grey literature. Two reviewers will independently screen citations, abstracts and full-text articles. Study methods, methodologies, dMH intervention details, participant information and engagement, and dissemination methods will be extracted, analysed (utilising content analysis), and qualitatively assessed for alignment with best practice ethical guidelines for undertaking Indigenous health research. A narrative summary of findings will be presented. Reporting will follow the Consolidated Criteria for Strengthening Reporting of Health Research involving Indigenous peoples (CONSIDER) and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR) guidelines. DISCUSSION: To date, there are no reviews which analyse engagement of Indigenous young people in the development and evaluation of dMH interventions. This review will appraise alignment of current practice with best practice guidelines to inform future research. It will highlight appropriate methods for the engagement of young people in study processes, providing guidance for health practitioners, policy makers, and researchers working in the field of Indigenous youth and dMH. SYSTEMATIC REVIEW REGISTRATION: Open Science Framework ( osf.io/2nkc6 ).

It's a little bit like prison, but not that much: Aboriginal women's experiences of an acute mental health inpatient unit.

This research aimed to gain an understanding of the acute mental health inpatient experience as described by Aboriginal women during admission. It recorded for the first time the words of Aboriginal women within the inpatient unit, including their perceptions of factors which may promote or impede a culturally safe environment. Eleven Aboriginal women inpatients gave interviews before discharge from the inpatient unit. Five Aboriginal Reference Group (ARG) members with experience of the inpatient unit also gave interviews, adding 'insider-outsider' perspectives. Interviews were recorded, transcribed, entered into NVivo software, and analysed inductively to raise codes and develop themes. Five interconnecting themes emerged: Social Context: life experience preceding, shaping, and following admission; Connection: with kin, community, and culture. Control: self-determination, legally and physically curtailed; Caring: actions promoting reconnection and self-determination; Communication: conveying caring and supporting agency, reconnection, and return to community. Findings reflected inpatient issues reported in previous studies, adding insights into the cultural concerns of Aboriginal women and offering practical clinical implications for culturally secure service delivery in an inpatient setting. Existing literature offered a basis for developing the model offered here for transcultural interaction for recovery in an inpatient setting. Attention to these findings can enhance Aboriginal women's inpatient experience and promote further research. The article complies with the COREQ-32 checklist for describing qualitative studies.

Staying Strong Toolbox: Co-design of a physical activity and lifestyle program for Aboriginal families with Machado-Joseph disease in the Top End of Australia.

Physical activity has positive health implications for individuals living with neurodegenerative diseases. The success of physical activity programs, particularly in culturally and linguistically diverse populations, is typically dependent on their alignment with the culture, lifestyle and environmental context of those involved. Aboriginal families living in remote communities in the Top End of Australia invited researchers to collaborate with them to co-design a physical activity and lifestyle program to keep individuals with Machado-Joseph disease (MJD) walking and moving around. The knowledge of Aboriginal families living with MJD, combined with findings from worldwide MJD research, formed the foundation for the co-design. An experience-based co-design (EBCD) approach, drawing from Indigenous and Participatory methodologies, was used. An expert panel of individuals with lived experience of MJD participated in a series of co-design phases. Prearranged and spontaneous co-design meetings were led by local community researchers within each phase. Data was collected using a culturally responsive ethnographic approach and analysed thematically. Sixteen panel members worked to develop the 'Staying Strong Toolbox' to cater for individuals with MJD who are 'walking strong'; or 'wobbly'; or 'in a wheelchair'. Based on the 'Staying Strong Framework', the Toolbox was developed as a spiral bound A3 book designed to guide the user to select from a range of activities to keep them walking and moving around and to identify those activities most important to them to work on. The 'Staying Strong Toolbox' is a community driven, evidence based resource for a physical activity and lifestyle program for Aboriginal families with MJD. The Toolbox provides a guide for health professionals and support workers to deliver person-centred support to Aboriginal families with MJD, and that can be modified for use by other families with MJD or people with other forms of ataxia around the world.

Caring for Mum On Country: Exploring the transferability of the Birthing On Country RISE framework in a remote multilingual Northern Australian context.

BACKGROUND & PROBLEM: Birthing On Country (BOC) is an international movement for returning childbirth to First Nations peoples and their communities. The RISE Framework was developed to guide evidence-based BOC implementation but has not yet been tested in a remote Australian community setting. AIM: To test the transferability and acceptability of the RISE Framework in a remote multilingual setting in a Yolŋu (First Nations) community in Northern Australia. METHODS: Working in partnership with one remote Yolŋu community, we used a decolonising participatory action research (D-PAR) approach to begin co-designing services and test the acceptability of the RISE Framework. A three-phased transferability process was developed: Warming the ground; Co-Interpreting; and Acceptability Testing. FINDINGS: The RISE Framework was customized to the local Yolŋu context and called 'Caring for Mum on Country'. It was articulated in two languages: Djambarrpuyŋu and English. We successfully used it to guide discussions at a community gathering privileging the voices of senior women to inform the design of local maternity services. DISCUSSION: Using the D-PAR approach, the RISE Framework was readily adapatable to this complex, remote and multilingual setting. It resonated with the Yolŋu community and proved useful for identifying current limitations of existing maternity services and importantly facilitating the design of Yolŋu centred strength-based maternity services. CONCLUSION: The RISE Framework, combined with our transformative methodology, offers a promising approach to guiding complex interventions for returning services to First Nations communities in diverse contexts. Testing in other settings will further contribute to growing an evidence-base for BOC service planning and implementation.

Finding a pathway and making it strong: Learning from Yolŋu about meaningful health education in a remote Indigenous Australian context.

ISSUE ADDRESSED: Access to meaningful health information is limited in remote regions of Australia where Indigenous languages and culture are strong but the prevalence of chronic conditions is extremely high. This qualitative study aimed to support and understand the evolution of an educational approach to improve communication about chronic conditions for Yolŋu (Aboriginal people of Northeast Arnhem Land). METHODS: Within a culturally responsive research design, data were gathered through participant observation and semi-structured interviews with educators and community members. An iterative and continuous process of data collection and inductive analysis, exploring key elements of the process as it evolved, supported the Project Team to modify and refine their approach as the project progressed. RESULTS: A high level of community participation and control was a critical element of the project. Collaboration between Yolŋu educators and community experts, with culturally competent support from others, enabled Yolŋu to share health information in ways that could not be achieved by outsiders. Yolŋu and biomedical knowledges were integrated to build and share meaningful, in-depth (not simplified or directive) oral explanations in local languages using culturally responsive communication processes. The urgent need for ongoing, sufficient and meaningful health education was a consistent and recurring theme in this context where chronic conditions are having a devastating impact. CONCLUSION: Sustained and equitable access to meaningful information, using a culturally responsive approach led by community educators, is crucial to improve health literacy and to enable genuinely informed decisions in prevention and management of chronic conditions. Long-term funding is needed to support ongoing programs. These findings may have relevance for others who do not share the culture and language of the majority population. SO WHAT?: Equity of access to meaningful health information through sustained support for community-led education processes is essential to improve First Nations health outcomes.

Drafting the Aboriginal and Islander Mental Health Initiative for Youth (AIMhi-Y) App: Results of a formative mixed methods study.

BACKGROUND: Culturally responsive, strengths-based early-intervention mental health treatment programs are considered most appropriate to influence the high rates of psychological distress and suicide experienced by Aboriginal and Torres Strait Islander youth. Few early intervention services effectively bridge the socio-cultural and geographic challenges of providing sufficient and culturally relevant services in rural and remote Australia. Mental Health apps provide an opportunity to bridge current gaps in service access if co-designed with Aboriginal and Torres Strait Islander youth to meet their needs. AIMS: This paper reports the results of the formative stage of the AIMhi-Y App development process which engaged Aboriginal and Torres Strait Islander youth in the co-design of the new culturally informed AIMhi-Y App. METHODS: Using a participatory design research approach, a series of co-design workshops were held across three sites with five groups of young people. Workshops explored concepts, understanding, language, acceptability of electronic mental health tools (e-mental health) and identified important characteristics of the presented applications and websites, chosen for relevance to this group. An additional peer supported online survey explored use of technology, help seeking and e-mental health design elements which contribute to acceptability. RESULTS: Forty-five, Aboriginal and Torres Strait Islander youth, aged 10-18 years, from three sites in the Northern Territory (NT) were involved in the workshops (n = 29). Although experiencing psychological distress, participants faced barriers to help seeking. Apps were perceived as a potential solution to overcome barriers by increasing mental health literacy, providing anonymity if desired, and linking young people with further help. Preferred app characteristics included a strength-based approach, mental health information, relatable content and a fun, appealing, easy to use interface which encouraged app progression. Findings informed the new AIMhi-Y App draft, which is a strengths-based early intervention wellbeing app for Aboriginal and Torres Strait Islander youth. CONCLUSIONS: Research findings highlight the need, feasibility and potential of these types of tools, from the perspective of Aboriginal and Torres Strait Islander youth.

Yolŋu with Machado-Joseph disease: Exploring communication strengths and needs.

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.

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.

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: 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. RESULTS: 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'. CONCLUSIONS: 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.