Aboriginal research and study protocols

The Aboriginal Research and Study Protocols have been developed as a guide for ECU staff and students undertaking research, projects or fieldwork that involve Indigenous Australian issues, people or knowledge or that impact on Indigenous people or communities. These protocols fulfil a strategic priority of ECU’s Reconciliation Action Plan: Develop clear and agreed protocols around Indigenous Australian research to ensure that research activity is informed by thorough cultural awareness and respect. They also reflect the requirements of key documents that must be addressed by applicants as required by the ECU Human Research Ethics Committee. If the proposed project relates to health, it will also require submission to the Western Australian Aboriginal Health Ethics Committee (WAAHEC). The protocols have been developed under the auspices of Kurongkurl Katitjin, ECU’s Centre for Indigenous Australian Education and Research and are based on two key elements, namely ethics and consultation

Delivering improvements in Aboriginal and Torres Strait Islander child and maternal health

The Rio Tinto Child Health Partnership was developed to deliver improvements in Aboriginal and Torres Strait Islander child and maternal health through the delivery of three projects: * modelling the WA Aboriginal Child Health Survey for the Northern Territory and Queensland * national foetal alcohol syndrome prevention strategy * enhancing Aboriginal workforce capacity The five-year Rio Tinto Child Health Partnership concluded in 2007. The report Delivering improvements in Aboriginal and Torres Strait Islander child and maternal health evaluates the results from the partnership, and states that the partnership has allowed strong relationships to be forged between researchers, Aboriginal communities, health services, government agencies and departments and corporate Australia. Significant benefits and outcomes include: increased awareness of fetal alcohol syndrome; identification of the issues which inhibit Aboriginal health professionals; support for culturally appropriate practices in primary health care and treatment services; and increased skills of health and community workers in identifying and responding to risk factors during pregnancy

Creating cultural empathy and challenging attitudes through Indigenous narratives

The poorer health status of Indigenous Australians has been largely attributed to social disadvantage and their marginalisation within mainstream society (Marmot, 2011). This includes access to health care, as well as proximity to health services, availability and cultural appropriateness of health services, transport availability, health insurance, the affordability of health services and patient proficiency in English (AIHW, 2011). The interpersonal attitudes and behaviours of non-Indigenous health providers, both conscious and unconscious, are also known to contribute to disparities in treatment, impairment of communication between health providers and patients, and consequently, patients’ mistrust of the health system due to negative past experiences (Geiger, 2001). This project collected stories from Indigenous people about their experiences with health care services. Their stories serve to enhance relationships and understanding between diverse peoples, and give Indigenous Australians a voice in health curricula across Australian universities and in agencies delivering health services

Engaging Australian Aboriginal narratives to challenge attitudes and create empathy in health care: A methodological perspective

Background: Unconscious bias and negative attitudes towards minority groups have detrimental effects on the way health care is, or is not, provided to these groups. Recognition of racist attitudes and behaviours as well as understanding clients’ experiences of health and health care are pivotal to developing better health care strategies to positively impact on the quality and safety of care provided to Indigenous people. Indigenous research demands inclusive research processes and the use of culturally appropriate methodologies. This paper presents a methodological account of collecting narratives which accurately and respectfully reflect Aboriginal Australians’ experiences with health care in Western Australia. The purpose of these narratives is to provide health students and professionals with an opportunity to ‘walk-in the shoes’ of Aboriginal people where face-to-face interaction is not feasible. Methods: With the incorporation of Indigenous peoples’ voices being an important link in cultural safety, the project was led by an Indigenous Reference group, who encouraged active participation of Aboriginal people in all areas of the project. Using a phenomenological approach and guided by the Indigenous Reference group, yarning data collection was implemented to collect stories focusing on Aboriginal people’s experiences with health care services. An open-access, on-line website was established to host education resources developed from these “yarns”. Results: Yarning provided a rich source of information on personal experiences and encouraged the story provider to recognise their facilitative role in the research process. While the methodology used in this project was lengthy and labour-intensive it afforded a respectful manner for story collection and highlighted several innate flaws when Western methods are applied to an Indigenous context. Conclusion: Engagement of an Indigenous Reference Group was pivotal to designing an appropriate methodology that incorporated the voices of Aboriginal people in a multimedia resource of Aboriginal narratives. However further research is warranted to understand how the resources are being used and integrated into curricula, and their impact on students and health care outcomes

Creating Cultural Empathy and Challenging Attitudes Through Indigenous Narrative Project

The gap in life expectancy between Indigenous and non-Indigenous Australians is too large to ignore. This has been attributed to social and economic disadvantage, access to health care and lack of cultural appropriateness of health services and providers. Creating culturally secure healthcare requires that we explore new ways for health professionals to relate to Aboriginal people. This article describes the development, implementation and early results from the Creating cultural empathy and challenging attitudes though Indigenous narrative project. The purpose of the project is to collect and trial narrative resources to engage students in stories of Indigenous people’s perceptions and experience of healthcare. Storytelling has a long tradition within Indigenous culture and narrative approaches can be successful in engaging students changing attitudes. These stories are intended to trigger classroom discussions to encourage students to reflect on their own assumptions and values and to enhance empathy, thereby enabling future health providers to improve their management of Indigenous patients. Key to this project has been working collaboratively with Indigenous people as active participants in the project with roles as project leads, team members, Indigenous Reference Group members, external evaluators and providers of the narratives

Medication cost problems among chronically ill adults in the US: did the financial crisis make a bad situation even worse?

A national internet survey was conducted between March and April 2009 among 27,302 US participants in the Harris Interactive Chronic Illness Panel. Respondents reported behaviors related to cost-related medication non-adherence (CRN) and the impacts of medication costs on other aspects of their daily lives. Among respondents aged 40–64 and looking for work, 66% reported CRN in 2008, and 41% did not fill a prescription due to cost pressures. More than half of respondents aged 40–64 and nearly two-thirds of those in this group who were looking for work or disabled reported other impacts of medication costs, such as cutting back on basic needs or increasing credit card debt. More than one-third of respondents aged 65+ who were working or looking for work reported CRN. Regardless of age or employment status, roughly half of respondents reporting medication cost hardship said that these problems had become more frequent in 2008 than before the economic recession. These data show that many chronically ill patients, particularly those looking for work or disabled, reported greater medication cost problems since the economic crisis began. Given links between CRN and worse health, the financial downturn may have had significant health consequences for adults with chronic illness

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

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

“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 rehabilitation Acknowledgment 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