Healing Right Way randomised control trial enhancing rehabilitation services for Aboriginal people with brain injury in Western Australia: translation principles and activities.

Background This report provides the theory, method and practice of culturally secure translation and knowledge exchange in the Healing Right Way Clinical Trial (2017-2022), outlining activities to date. Healing Right Way was a stepped wedge cluster randomised controlled trial conducted in Western Australia, aimed at enhancing rehabilitation services and quality of life for Aboriginal Australians following acquired brain injury. The trial translation plan was aspirational and action-oriented, with its implementation iterative and ongoing. Translational activities aimed to inform service and research planning for Aboriginal people with brain injury. Situated in the intercultural space, the work guards against undertaking activities that are monocultural, colonial and appropriating in favour of work that is authentically viewed through the dual lens of whiteness and Aboriginal and Torres Strait Islander ways of knowing, being and doing, and is strengths-based. Methods Three translational and knowledge exchange components were identified, relating to the role of Aboriginal Brain Injury Coordinators, cultural training of hospital staff and the research process itself. Knowledge plans were developed for key audiences, with potential translation products to be monitored for ongoing impact. Results Results demonstrate that translational and knowledge exchange were iteratively embedded throughout the trial life cycle. Data sources included community engagement, partnership meetings and interviews. Activities involved presentations to diverse audiences including bureaucrats, community and participants. Conclusions This report provides a snapshot of the first translation knowledge exchange plan and activities constructed in relation to brain injury rehabilitation services for Aboriginal people. Challenges encountered, as well as successes to date, are discussed.

Intersectionality and Its Relevance in the Context of Aboriginal People with Brain Injury in Australia.

In this article, we explore the benefits of recognizing the impact of intersectionality on access to, and provision of, brain injury care in a First Nations context. While disadvantage and discrimination are often associated with the intersection of culture, gender, disability, and socioeconomic disadvantage, it is only when these factors are explored together that clinicians can really understand what people need to recover and thrive following acquired brain injury. In this article, we challenge speech-language pathologists to examine their own practices, to look beyond Western models of health and constraints of many current institutional models of care and ways of framing research, to acknowledge historical and ongoing colonizing influences, and to engage with community-led solutions. We provide a model of Aboriginal-led care, where intersection of discrimination and marginalization is minimized and the multiple components of the individual, carers/communication partners, and the environment become empowering factors instead.

Communication services for First Nations peoples after stroke and traumatic brain injury: Alignment of Sustainable Development Goals 3, 16 and 17.

PURPOSE: Colonisation and continuing discrimination have significantly and negatively impacted the physical, social and emotional wellbeing of First Nations peoples globally. In Australia, Aboriginal cultures thrive despite ongoing barriers to health care. This paper describes challenges and new initiatives for Australian Aboriginal people with acquired communication disability after brain injury and their alignment with the global aims forming the Sustainable Development Goals. RESULT: Research undertaken by an Aboriginal and non-Aboriginal multidisciplinary team over a decade in Western Australia identified and responded to mismatches between community needs and services. Initiatives described include the Missing Voices, Healing Right Way, Brain Injury Yarning Circles and Wangi/Yarning Together projects. Recommendations implemented related to (a) greater incorporation of Aboriginal cultural protocols and values within services, (b) more culturally secure assessment and treatment tools, (c) support after hospital discharge, (d) Aboriginal health worker involvement in support. Implementation includes cultural training of hospital staff, trialling new assessment and treatment methods, and establishing community-based Aboriginal Brain Injury Coordinator positions and relevant peer support groups. CONCLUSION: Culturally secure brain injury rehabilitation in Australia is in its infancy. Our initiatives challenge assumptions about worldviews and established Western biomedical models of healthcare through incorporating Indigenous methodologies and leadership, and community-driven service delivery. This commentary paper focuses on Sustainable Development Goals 3, 16 and 17.

Statistical analysis plan for the stepped wedge clinical trial Healing Right Way-enhancing rehabilitation services for Aboriginal Australians after brain injury.

BACKGROUND: Aboriginal Australians are known to suffer high levels of acquired brain injury (stroke and traumatic brain injury) yet experience significant barriers in accessing rehabilitation services. The aim of the Healing Right Way trial is to evaluate a culturally secure intervention for Aboriginal people with newly acquired brain injury to improve their rehabilitation experience and quality of life. Following publication of the trial protocol, this paper outlines the statistical analysis plan prior to locking the database.  METHODS: The trial involves a stepped wedge design with four steps over 3 years. Participants were 108 adult Aboriginal Australians admitted to one of eight hospitals (four rural, four urban) in Western Australia within 6 weeks of onset of a new stroke or traumatic brain injury who consented to follow-up for 26 weeks. All hospital sites started in a control phase, with the intervention assigned to pairs of sites (one metropolitan, one rural) every 26 weeks until all sites received the intervention. The two-component intervention involves training in culturally safe care for hospital sites and enhanced support provided to participants by Aboriginal Brain Injury Coordinators during their hospital stay and after discharge. The primary outcome is quality of life as measured by the Euro QOL-5D-3L VAS. A mixed effects linear regression model will be used to assess the between-group difference at 26 weeks post-injury. The model will control for injury type and severity, age at recruitment and time since commencement of the trial, as fixed effects. Recruitment site and participant will be included as random effects. Secondary outcomes include measurements of function, independence, anxiety and depression, carer strain, allied health occasions of service received and hospital compliance with minimum processes of care based on clinical guidelines and best practice models of care. DISCUSSION: The trial will provide the first data surrounding the effectiveness of an intervention package for Aboriginal people with brain injury and inform future planning of rehabilitation services for this population. The statistical analysis plan outlines the analyses to be undertaken. TRIAL REGISTRATION: Australia New Zealand Clinical Trials Registry ACTRN12618000139279. Registered 30 January, 2018.

The development of aboriginal brain injury coordinator positions: a culturally secure rehabilitation service initiative as part of a clinical trial.

Brain injury, resulting from stroke and traumatic brain injury, is a common occurrence in Australia, with Aboriginal people affected at a significant rate and impact felt by individuals, families and communities. Access to brain injury rehabilitation services for Aboriginal people is reported to be often limited, with very little support outside the hospital environment. Our research involving Aboriginal brain injury survivors and their families to date has revealed that people often manage 'on their own' following such events. Following recommendations from survivors and their families, the Healing Right Way clinical trial, currently underway in Western Australia, has created the role of Aboriginal Brain Injury Coordinator (ABIC) to assist in navigating information and services, particularly after discharge from hospital. Eight positions for this role have been instigated across metropolitan and rural regions in the state. Healing Right Way's aim is to enhance rehabilitation services and improve quality of life for Aboriginal Australians after brain injury. The ABIC's role is to provide education, support, liaison and advocacy services to participants and their families over a six-month period, commencing soon after the participant's stroke or injury has occurred. This paper outlines the development of this role, the partnerships involved, experiences to date and identifies some facilitators and barriers encountered that may impact the role's ongoing sustainability. Details of components of the planned full Process Evaluation of Healing Right Way related to the ABIC role and the partnerships surrounding it are also provided. In combination with the trial's ultimate results, this detail will assist in future service planning and provide a model of culturally secure care for stroke and brain injury services that can also inform other sub-acute and primary care models.

Healing Right Way: study protocol for a stepped wedge cluster randomised controlled trial to enhance rehabilitation services and improve quality of life in Aboriginal Australians after brain injury.

INTRODUCTION: Despite higher incidence of brain injury among Aboriginal compared with non-Aboriginal Australians, suboptimal engagement exists between rehabilitation services and Aboriginal brain injury survivors. Aboriginal patients often feel culturally insecure in hospital and navigation of services post discharge is complex. Health professionals report feeling ill-equipped working with Aboriginal patients. This study will test the impact of a research-informed culturally secure intervention model for Aboriginal people with brain injury. METHODS AND ANALYSIS: Design: Stepped wedge cluster randomised control trial design; intervention sequentially introduced at four pairs of healthcare sites across Western Australia at 26-week intervals.Recruitment: Aboriginal participants aged ≥18 years within 4 weeks of an acute stroke or traumatic brain injury.Intervention: (1) Cultural security training for hospital staff and (2) local, trial-specific, Aboriginal Brain Injury Coordinators supporting participants.Primary outcome: Quality-of-life using EuroQOL-5D-3L (European Quality of Life scale, five dimensions, three severity levels) Visual Analogue Scale score at 26 weeks post injury. Recruitment of 312 participants is estimated to detect a difference of 15 points with 80% power at the 5% significance level. A linear mixed model will be used to assess the between-condition difference.Secondary outcome measures: Modified Rankin Scale, Functional Independence Measure, Modified Caregiver Strain Index, Hospital Anxiety and Depression Scale at 12 and 26 weeks post injury, rehabilitation occasions of service received, hospital compliance with minimum care processes by 26 weeks post injury, acceptability of Intervention Package, feasibility of Aboriginal Brain Injury Coordinator role.Evaluations: An economic evaluation will determine the potential cost-effectiveness of the intervention. Process evaluation will document fidelity to study processes and capture changing contexts including barriers to intervention implementation and acceptability/feasibility of the intervention through participant questionnaires at 12 and 26 weeks. ETHICS AND DISSEMINATION: The study has approvals from Aboriginal, university and health services human research ethics committees. Findings will be disseminated through stakeholder reports, participant workshops, peer-reviewed journal articles and conference papers. TRIAL REGISTRATION NUMBER: ACTRN12618000139279.

"You felt like a prisoner in your own self, trapped": the experiences of Aboriginal people with acquired communication disorders.

PURPOSE: Aboriginal Australians are under-represented in brain injury rehabilitation services despite a high incidence of both stroke and traumatic brain injury in this population. This study aimed to explore the experiences of Aboriginal Australian adults with acquired communication disorders (ACDs) after brain injury for the first time to inform the development of accessible and culturally secure service delivery models. METHODS AND MATERIALS: Semi-structured interviews were undertaken with 32 Aboriginal people who had experienced a brain injury resulting in ACDs (aged 35-79 years) and 18 family members/carers across Western Australia. Thematic analysis identified common themes across participants. RESULTS: Overall themes related to communication (both related to the communication disorder and general healthcare interactions), health and social contexts, recovery, and support, being away from family and country, knowledge and beliefs about brain injury, and follow-up. CONCLUSIONS: An increase in healthcare staff's appreciation of the health and social contexts of Aboriginal people after brain injury is needed in order to improve communication with Aboriginal patients and the ability to offer accessible rehabilitation services. Ongoing support is required, with cultural identity noted as key to ensuring cultural security and ultimately recovery. Involvement of family and other Aboriginal people in recovery processes, as well as access to relevant Aboriginal languages and proximity to ancestral lands is central.Implications for rehabilitationAcknowledgment of cultural identity and strengths through involvement of extended family and Aboriginal Hospital Liaison Officers, access to language and proximity to country all central to rehabilitation planning for Aboriginal people after brain injury.Cultural security training for rehabilitation staff is recommended focusing on clear two-way communication skills to make medical information accessible for Aboriginal patients and to listen to patients' concerns in a way that respects cultural context.Information regarding practical support and implications for ongoing management of life after brain injury (for the person and their family) is essential, and should supplement the medical-related information provided.Follow-up post discharge from hospital best facilitated through establishing contact with local Aboriginal community through Aboriginal community controlled health services, community elders, and Aboriginal health workers across organisations.

General practitioners' perceptions of their communication with Australian Aboriginal patients with acquired neurogenic communication disorders.

OBJECTIVE: Aboriginal people have high rates of stroke and traumatic brain injury (TBI), often with residual, chronic communication deficits and multiple co-morbidities. This study examined general practitioners' (GPs') perceptions of their communication with Aboriginal patients with acquired communication disorders (ACD) after brain injury. Effective communication underpins good care but no previous research has explored this specific context. METHODS: A qualitative descriptive approach was employed using interviews and focus groups with 23 GPs from metropolitan Perth and five regional sites in Western Australia. Data were analysed thematically. RESULTS: GPs reported low visibility of Aboriginal patients with ACD in their practices, minimal training on neurogenic ACD, and difficulty distinguishing ACD from cultural-linguistic factors. They had few communication resources, and depended on families and Aboriginal Health Workers to assist in interactions. They rarely used formal interpreting services or referred to speech pathology. They reported communication (dis)ability having low priority in consultations. CONCLUSION: GPs report difficulty recognising ACD and their lack of prioritising assessment and treatment of communication ability after brain injury potentially compounds the disadvantage and disempowerment experienced by many Aboriginal people. PRACTICE IMPLICATIONS: GPs require further communication and cultural training. Improved access to speech pathology and formal interpreting services would be beneficial.

The Wangi (talking) project: A feasibility study of a rehabilitation model for aboriginal people with acquired communication disorders after stroke.

Purpose: Aboriginal Australians are under-represented in stroke rehabilitation services and rehabilitation practices that are sensitive to the needs of Aboriginal people are not currently available. This project tested the feasibility and acceptability of a rehabilitation model and approach to therapy with Aboriginal people with acquired communication disorders post-stroke. Method: Eight Aboriginal people with acquired communication disorders post-stroke were recruited to this study. Sixteen treatment sessions were provided twice weekly at the person's place of residence by a speech-language pathologist and Aboriginal co-worker. Feasibility was measured by analysing the number of sessions conducted jointly by the speech-language pathologist and Aboriginal co-worker and participant attendance. Participant acceptability was measured through the analysis of a post-therapy questionnaire. The Aboriginal co-worker's and speech-language pathologists' perceptions of the acceptability were collected through semi structured interviews. Result: Across all sessions 84.2% were attended by the Aboriginal co-worker and speech-language pathologist and seven of the eight participants completed all prescribed sessions. Positive feedback was provided by participants, the Aboriginal co-worker and speech-language pathologist on the key components of the programme. Conclusion: The rehabilitation model used within Wangi appears to be feasible and acceptable to participants and therapists. It provides direction to improve the quality of care for Aboriginal stroke survivors.

Missing Voices: Profile, Extent, and 12-Month Outcomes of Nonfatal Traumatic Brain Injury in Aboriginal and Non-Aboriginal Adults in Western Australia Using Linked Administrative Records.

OBJECTIVE: To investigate differences in the profile and outcomes between Aboriginal and non-Aboriginal Western Australians (WAs) hospitalized with traumatic brain injury (TBI). SETTING: WA hospitals. PARTICIPANTS: TBI cases aged 15 to 79 years surviving their first admission during 2002-2011. DESIGN: Patients identified from diagnostic codes and followed up for 12 months or more using WA-wide person-based linked hospital and mortality data. MAIN MEASURES: Demographic profile, 5-year comorbidity history, injury mechanism, injury severity, 12-month readmission, and mortality risks. Determinants of 12-month readmission. RESULTS: Of 16 601 TBI survivors, 14% were Aboriginal. Aboriginal patients were more likely to be female, live remotely, and have comorbidities. The mechanism of injury was an assault in 57% of Aboriginal patients (vs 20%) and transport in 33% of non-Aboriginal patients (vs 17%), varying by remoteness. One in 10 Aboriginal TBI patients discharged themselves against medical advice. Crude 12-month readmission but not mortality risk was significantly higher in Aboriginal patients (48% vs 36%). The effect of age, sex, and injury mechanism on 12-month readmission was different for Aboriginal and non-Aboriginal patients. CONCLUSION: These findings suggest an urgent need for multisectoral primary prevention of TBI, as well as culturally secure and logistically appropriate medical and rehabilitation service delivery models to optimize outcomes.

Development of the Aboriginal Communication Assessment After Brain Injury (ACAABI): A screening tool for identifying acquired communication disorders in Aboriginal Australians.

PURPOSE: Acquired communication disorders (ACD), following stroke and traumatic brain injury, may not be correctly identified in Aboriginal Australians due to a lack of linguistically and culturally appropriate assessment tools. Within this paper we explore key issues that were considered in the development of the Aboriginal Communication Assessment After Brain Injury (ACAABI) - a screening tool designed to assess the presence of ACD in Aboriginal populations. METHOD: A literature review and consultation with key stakeholders were undertaken to explore directions needed to develop a new tool, based on existing tools and recommendations for future developments. RESULT: The literature searches revealed no existing screening tool for ACD in these populations, but identified tools in the areas of cognition and social-emotional wellbeing. Articles retrieved described details of the content and style of these tools, with recommendations for the development and administration of a new tool. The findings from the interview and focus group views were consistent with the approach recommended in the literature. CONCLUSIONS: There is a need for a screening tool for ACD to be developed but any tool must be informed by knowledge of Aboriginal language, culture and community input in order to be acceptable and valid.