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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.

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.

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.

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. 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. 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. 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.

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.

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 Yolŋu (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 Yolŋu 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.

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. Methods: 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. Results: 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: 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.

Background In Australia’s Northern Territory, most Aboriginal people primarily speak an Aboriginal language. Poor communication between healthcare providers and Aboriginal people results in adverse outcomes including death. This study aimed to identify remediable barriers to utilisation of Aboriginal Interpreter services at the Northern Territory’s tertiary hospital, which currently manages over 25,000 Aboriginal inpatients annually. Methods This is a multi-method study using key stakeholder discussions, medical file audit, bookings data from the Aboriginal Interpreter Service 2000–2015 and an online cross-sectional staff survey. The Donabedian framework was used to categorise findings into structure, process and outcome. Results Six key stakeholder meetings each with approximately 15 participants were conducted. A key structural barrier identified was lack of onsite interpreters. Interpreter bookings data revealed that only 7603 requests were made during the 15-year period, with completion of requests decreasing from 337/362 (93.1%) in 2003–4 to 649/831 (78.1%) in 2014–15 ( p  < 0.001). Non-completion was more common for minority languages (p < 0.001). Medical files of 103 Aboriginal inpatients were audited. Language was documented for 13/103 (12.6%). Up to 60/103 (58.3%) spoke an Aboriginal language primarily. Of 422 staff who participated in the survey, 18.0% had not received ‘cultural competency’ training; of those who did, 58/222 (26.2%) indicated it was insufficient. The Aboriginal Interpreter Service effectiveness was reported to be good by 209/368 (56.8%), but only 101/367 (27.5%) found it timely. Key process barriers identified by staff included booking complexities, time constraints, inadequate delivery of tools and training, and greater convenience of unofficial interpreters. Conclusion We identified multiple structural and process barriers resulting in the outcomes of poor language documentation and low rates of interpreter bookings. Findings are now informing interventions to improve communication.

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

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