Ngununggula: The story of a cancer care team for aboriginal people

In Dharawal Country in regional New South Wales, a small and powerful team provides cancer prevention, screening, support and care for Australian Aboriginal people, their families and communities. In keeping with Aboriginal practices and values, their uniquely holistic approach encompasses everything from food security and finding childcare, to support at diagnosis, surgical, radiation or chemo treatment, through to holding funerals, facilitating yarning groups, and Ceremony for survivors of cancer and their carers. The team created a manual for Aboriginal Health Workers, and other staff of Aboriginal Community Controlled Health Services, together with training webinars, and modules. The program is also designed for Aboriginal Liaison Officers and Palliative Care Workers who work in hospitals. The book and the training modules are called Ngununggula. The name, from the Gundungurra language, means working and walking together. “We’ll make ourselves available to anyone that wants to tread this path because we know all the pitfalls. We’ve learned them. We’ve tripped and had to climb out of them again. Anyone that wants the shortcuts—more learning, less pain—here they are. We want to share and help. I want the message to get out all over the place. I want to share the resources, to support anyone else who wants to run programs or build a team like we do.” Kyla Wynn, Counsellor/Co-ordinator Cancer Care Team, Illawarra Aboriginal Medical Service. Partners include: Aboriginal Health and Medical Research Council, Illawarra Aboriginal Medical Service, University of Sydney, University of Wollongong, Menzies School of Health Research.

Combatting neo-Colonialism in Health Research: What can Aboriginal Health Research Ethics and Global Health Research Ethics Teach Each Other?

The ethics of research involving Aboriginal populations and low and middle-income country populations each developed out of a long history of exploitative research projects and partnerships. Commonalities and differences between the two fields have not yet been examined. This study undertook two independent literature searches for Aboriginal health research ethics and global health research ethics. Content analysis identified shared and differently emphasised ethical principles and concepts between the two fields. Shared ethical concepts like “benefit” and “capacity development” have been developed to guide collaborations in both Aboriginal health research and global health research. However, Aboriginal health research ethics gives much greater prominence to ethical principles that assist in decolonising research practice such as “self-determination”, “community-control”, and “community ownership”. The paper argues that global health research ethics would benefit from giving greater emphasis to these principles to guide research practice, while justice as approached in global health research ethics may inform Aboriginal health research practice. With increasing attention being drawn to the need to decolonise global health research, the lessons Aboriginal health research ethics can offer may be especially timely.

Laying the foundations of meaningful community engagement in Aboriginal health research: Establishing a community reference group and terms of reference in a novel research field.

Background Community engagement in Aboriginal health research aims to protect and empower participating individuals and communities and is an ethical requirement in research. One approach to incorporating community engagement in research is to engage a community reference group to provide oversight and cultural guidance to projects. The aim of this study was to describe the process of establishing a community reference group and terms of reference to guide the Enhancing Equity, Collaboration and Culturally secure Osteoarthritis care for Aboriginal Australians collaboration (ECCO). ECCO is a national inter-professional team of Aboriginal and non-Aboriginal health service staff and researchers that was established to develop culturally secure osteoarthritis care for Aboriginal people. Methods This was a two-phase study conducted in Victoria, Australia. In phase one, semi-structured research yarns were conducted collaboratively by Aboriginal and non-Aboriginal co-investigators to explore Aboriginal health stakeholder perspectives on establishing a community reference group and terms of reference. In phase two, we used recommendations identified in phase one to invite members to participate in the ECCO community reference group and to ratify the terms of reference through a culturally adapted focus group. Results Thirteen people (eight female, four male) participated in phase one. Participants represented diverse professional backgrounds including physiotherapy, nursing, general practice, health services management, hospital liaison, cultural safety education, health research and the arts. Three themes were identified in phase one; Recruitment and Representation (trust and relationships, in-house call-outs, broad-spectrum expertise and Aboriginal majority); Purpose (community engagement, research steering, knowledge dissemination and advocacy) and; Function and Logistics (frequency and format of meetings, size of group, roles and responsibilities, authority, communication and dissemination). In phase two, six Aboriginal people were invited to become members of the ECCO community reference group who recommended changes to seven domains of the terms of reference. Conclusion The findings of this study are captured in a 10-step framework which describes practical strategies for establishing a community reference group and terms of reference.

Aboriginal Health Workers Promoting Oral Health among Aboriginal and Torres Strait Islander Women during Pregnancy: Development and Pilot Testing of the Grinnin’ Up Mums & Bubs Program

Background: this study aimed to develop and pilot test the model of care, Grinnin’ Up Mums & Bubs, to train Aboriginal Health Workers to promote oral health among Aboriginal and Torres Strait Islander pregnant women. Methods: Participatory Action Research was employed to develop the different components of the model (oral health promotion resources, training workshop, and a culturally safe referral pathway to dental services). The model was piloted (pre-post), using an embedded mixed-methods design, to determine the acceptability, satisfaction, and any recommendations made by seven Aboriginal Health Workers at an antenatal service in Western Sydney, Australia. Results: there was a high level of satisfaction with the components of the model of care among the participants, who believed that the model could be integrated into practice. The training showed some improvement in oral health knowledge and confidence. The participants recommended strategies for discussing oral health with Aboriginal and Torres Strait Islander pregnant women, and changes in public health dental policy to ensure that all women would be able to access affordable dental services through the referral pathway. Conclusion: the findings suggest a high level of satisfaction with the model of care among the Aboriginal Health Workers. Further evaluation is needed to confirm the short and long-term impact of the model.

Study protocol for a prospective process evaluation of a culturally secure rehabilitation programme for Aboriginal Australians after brain injury: the Healing Right Way project

IntroductionAboriginal and Torres Strait Islander (hereafter respectfully referred to as Aboriginal) people are Australia’s First Peoples, having the longest continuous culture in the world and deep spiritual connections with ancestral land. Improvements in their health and well-being is a major policy goal of Australian governments, as the legacy of colonisation and disruption of cultural practices contribute to major health challenges. Lack of culturally secure services impacts participation of Aboriginal people in health services. Aboriginal people with a brain injury typically experience poor access to rehabilitation and support following hospital discharge. ‘Healing Right Way’ (HRW) is a randomised control trial aiming to improve access to interdisciplinary and culturally secure rehabilitation services for Aboriginal people after brain injury in Western Australia, improve health outcomes and provide the first best practice model. This protocol is for the process evaluation of the HRW trial.Methods and analysisA prospective mixed methods process evaluation will use the Consolidated Framework for Implementation Research to evaluate implementation and intervention processes involved in HRW. Data collection includes qualitative and quantitative data from all sites during control and intervention phases, relating to three categories: (1) implementation of trial processes; (2) cultural security training; and (3) Aboriginal Brain Injury Coordinator role. Additional data elements collected from HRW will support the process evaluation regarding fidelity and intervention integrity. Iterative cross-sectional and longitudinal data synthesis will support the implementation of HRW, interpretation of findings and inform future development and implementation of culturally secure interventions for Aboriginal people.Ethics and disseminationThis process evaluation was reviewed by The University of Western Australia Human Research Ethics Committee (RA/4/20/4952). Evaluation findings will be disseminated via academic mechanisms, seminars at trial sites, regional Aboriginal health forums, peak bodies for Aboriginal health organisations and the Australian Indigenous HealthInfoNet (https://healthinfonet.ecu.edu.au/).Trial registration numberACTRN12618000139279.

Aboriginal Health Workers promoting oral health among Aboriginal and Torres Strait Islander women during pregnancy: Development and pilot testing of the Grinnin’ Up Mums & Bubs program

Background: This study aimed to develop and pilot test the model of care, Grinnin’ Up Mums and Bubs, to train Aboriginal Health Workers to promote oral health among Aboriginal and Torres Strait Islander pregnant women. Methods: Participatory Action Research was employed to develop the different components of the model (oral health promotion resources, training workshop, and a culturally safe referral pathway to dental services). The model was piloted (pre-post) using an embedded mixed-methods design with seven Aboriginal Health Workers at an antenatal service in Western Sydney, Australia. Results: There was a high level of satisfaction with the components of the model of care among the participants, who believed that the model could be integrated into practice. The training showed some improvement in oral health knowledge and confidence. The participants recommended strategies for discussing oral health with Aboriginal and Torres Strait Islander pregnant women, and changes in public health dental policy to ensure that all women would be able to access affordable dental services through the referral pathway. Conclusion: The findings suggest a high level of satisfaction with the model of care among the Aboriginal Health Workers. Further evaluation is needed to confirm the short and long-term impact of the model.

A Qualitative Study Exploring the Experiences and Perspectives of Australian Aboriginal Women on Oral Health during Pregnancy

The aim of this study was to explore whether oral health was an important consideration for Aboriginal and Torres Strait Islander women during pregnancy, whether oral health could be promoted by Aboriginal health staff, and strategies that would be appropriate to use in a new model of care. A qualitative descriptive methodology underpinned the study. All participants in this study identified as Aboriginal, with no Torres Strait Islander participants, and were from New South Wales, Australia. The interviews were analysed using inductive thematic analysis. From the data, two themes were constructed. The first theme identified that oral health was not always the first priority for participants as poor accessibility alongside other competing commitments were challenges to accessing oral health services. The second theme highlighted how relationships with personal networks and healthcare providers were essential and could be used to support maternal oral health during pregnancy. Effective strategies to promote oral health during pregnancy for Aboriginal and Torres Strait Islander women should involve key stakeholders and health care providers, like Aboriginal Health Workers, to facilitate culturally safe support and tailored oral health advice.

“We are only looking at the tip of the iceberg in infertility”: perspectives of health providers about fertility issues and management among Aboriginal and Torres Strait Islander people

Introduction Aboriginal and Torres Strait Islander women and men are disproportionately affected by a range of risk factors for infertility. However, remarkably little is known about the prevalence of infertility in this group, or how Aboriginal and Torres Strait Islander people access fertility treatments including assisted reproductive technology (ART). This qualitative study aims to explore health care provider (HCP) perspectives on the health burden of infertility among Aboriginal and Torres Strait Islander people, as well as factors that may affect access to infertility treatment for this group. Method Semi-structured interviews were conducted with HCPs (8 doctors; 3 nurses and 1 Aboriginal Health Practitioner) working in fertility care in the Northern Territory, Australia. Transcribed interviews were analysed using an iterative thematic approach using the NVivo-9 software package. Results Providers perceive infertility as an underestimated health issue in this patient population, reporting a high prevalence of infertility-related risk factors but fewer clinical encounters of diagnosis and treatment. Perceived barriers to accessing fertility care included cultural differences such as the shame and stigma associated with reproductive health and the separation of men’s business and women’s business; service-related barriers such as limited timely and affordable access to specialist health services and; a lack of culturally responsive and appropriate fertility services. Providers had mixed opinions on their role in ameliorating inequities of access, and hence a range of strategies to address barriers were suggested. These included a greater patient education, ongoing patient support and providing a culturally safe environment. Conclusion The current study adds to the understanding of how Aboriginal and Torres Strait Islander people access fertility treatments. There is a need for further research to quantify infertility in Aboriginal and Torres Strait Islander people, investigate community perceptions towards infertility and identify community-driven priorities to improve access to fertility care for this population.