Djäkamirr: Exploring principles used in piloting the training of First Nations doulas in a remote multilingual Northern Australian community setting.

PROBLEM AND BACKGROUND: There is growing evidence in First Nations doula care as a strategy to address perinatal inequities and improve maternal care experiences. However, there is no evidence around the approach and principals required to successfully deliver First Nations doula (childbirth) training. QUESTION/AIM: To explore and describe the approach and principles used in piloting the training of First Nations doulas in remote, multilingual Northern Australian community settings. METHODS: Case study with participant interviews to identify principles underpinning our Decolonising Participatory Action Research (D-PAR) approach and training delivery. FINDINGS: Reflections on our D-PAR research process identified enabling principles: 1) Use of metaphors for knowledge reflexivity, 2) Accommodate cultural constructions of time 3) Practice mental agility at the Cultural Interface, 4) Advocate and address inequities, 5) Prioritise meaningful curriculums and resources, 6) Establish cross-cultural recognition and validity; and 7) Ensure continuity of First Nations culture and language. DISCUSSION: The success of our doula training pilot disrupts a pervasive colonial narrative of First Nation deficit and demonstrates that respectful, genuine, and authentic partnerships can power transformative individual and collective community change. Our D-PAR approach assumes mutual learning and expertise between community and researchers. It is well suited to collaborative design and delivery of First Nations reproductive health training.

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.

Facilitating Sustainable Disaster Risk Reduction in Indigenous Communities: Reviving Indigenous Worldviews, Knowledge, and Practices through Two-Way Partnering.

The Sendai Framework of Action 2015-2030 calls for holistic Indigenous disaster risk reduction (DRR) research. Responding to this call, we synergized a holistic philosophical framework (comprising ecological systems theory, symbolic interactionism, and intersectionality) and social constructionist grounded theory and ethnography within a critical Indigenous research paradigm as a methodology for exploring how diverse individual and contextual factors influence DRR in a remote Indigenous community called Galiwinku, in the Northern Territory of Australia. Working together, Indigenous and non-Indigenous researchers collected stories in local languages using conversations and yarning circles with 20 community members, as well as participant observations. The stories were interpreted and analysed using social constructivist grounded theory analysis techniques. The findings were dialogued with over 50 community members. The findings deeply resonated with the community members, validating the trustworthiness and relevance of the findings. The grounded theory that emerged identified two themes. First, local Indigenous knowledge and practices strengthen Indigenous people and reduce the risks posed by natural hazards. More specifically, deep reciprocal relationships with country and ecological knowledge, strong kinship relations, Elder's wisdom and authority, women and men sharing power, and faith in a supreme power/God and Indigenous-led community organizations enable DRR. Second, colonizing practices weaken Indigenous people and increase the risks from natural hazards. Therefore, colonization, the imposition of Western culture, the government application of top-down approaches, infiltration in Indigenous governance systems, the use of fly-in/fly-out workers, scarcity of employment, restrictions on technical and higher education opportunities, and overcrowded housing that is culturally and climatically unsuitable undermine the DRR capability. Based on the findings, we propose a Community-Based DRR theory which proposes that facilitating sustainable Indigenous DRR in Australian Indigenous communities requires Indigenous and non-Indigenous partners to genuinely work together in two-directional and complementary ways.

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.

Recurrence patterns identify aggressive form of human papillomavirus-dependent vulvar cancer.

BACKGROUND: Vulvar cancer is rare and, as a result, is understudied. Treatment is predominantly surgery, irrespective of the type of vulvar cancer, and is associated with physical, emotional and sexual complications. A cluster of human papillomavirus (HPV)-dependent vulvar cancer patients was identified in Arnhem Land Northern Territory (NT), Australia, in which young Indigenous women were diagnosed at 70 times the national incidence rate. AIMS: To assess whether women from the Arnhem Land cluster differ from women with vulvar squamous cell carcinoma (VSCC) and vulvar intraepithelial neoplasia (VIN) resident elsewhere in the NT in recurrence after treatment, disease progression and mortality. MATERIALS AND METHODS: A retrospective cohort study of NT-resident women diagnosed with VIN or invasive vulvar cancer (VSCC) between 1 January 1993 and 30 June 2015 was undertaken. Time to recurrence was assessed using cumulative incidence plots and Fine and Gray competing risk regression models. Mean cumulative count was used to estimate the burden of recurrent events. RESULTS: Indigenous women from Arnhem Land experienced more recurrences after treatment than non-Indigenous women, the cancers recurred faster, and Indigenous women have worse survival at five years. CONCLUSIONS: In characterising the epidemiological features of this cluster, we have identified a particularly aggressive form of vulvar cancer. This provides a unique opportunity for elucidating the aetiopathological pathways driving vulvar cancer development that may ultimately lead to preventive and therapeutic targets for this neglected malignancy. Further, these findings have important implications for clinical practice and HPV vaccination policy in the affected population.

Building Yolŋu Skills, Knowledge, and Priorities into Early Childhood Assessment and Support: Protocol for a Qualitative Study.

BACKGROUND: Yolngu or Yolŋu are a group of indigenous Australian people inhabiting north-eastern Arnhem Land in the Northern Territory of Australia. Recent government policy addressing disparities in outcomes between Indigenous and other children in Australia has resulted in the rapid introduction of early childhood interventions in remote Aboriginal communities. This is despite minimal research into their appropriateness or effectiveness for these contexts. OBJECTIVE: This research aims to privilege Aboriginal early childhood knowledge, priorities and practices and to strengthen the evidence base for culturally responsive and relevant assessment processes and support that distinguishes "difference" from "deficit" to facilitate optimal child development. METHODS: This collaborative qualitative research employs video ethnography, participant observation and in-depth interviews, involving Aboriginal families and researchers in design, implementation, interpretation and dissemination using a locally developed, culturally responsive research approach. Longitudinal case studies are being conducted with 6 families over 5 years and emerging findings are being explored with a further 50 families and key community informants. Data from all sources are analyzed inductively using a collaborative and iterative process. The study findings, grounded in an in-depth understanding of the cultural context of the study but with relevance to policy and practice more widely, are informing the development of a Web-based educational resource and targeted knowledge exchange activities. RESULTS: This paper focuses only on the research approach used in this project. The findings will be reported in detail in future publications. In response to community concerns about lack of recognition of Aboriginal early childhood strengths, priorities and knowledge, this collaborative community-driven project strengthens the evidence base for developing culturally responsive and relevant early childhood services and assessment processes to support optimal child development. The study findings are guiding the development of a Web-based educational resource for staff working with Aboriginal communities and families in the field of early child development. This website will also function as a community-developed tool for strengthening and maintaining Aboriginal knowledge and practice related to child development and child rearing. It will be widely accessible to community members through a range of platforms (eg, mobile phones and tablets) and will provide a model for other cultural contexts. CONCLUSIONS: This project will facilitate wider recognition and reflection of cultural knowledge and practice in early childhood programs and policies and will support strengthening and maintenance of cultural knowledge. The culturally responsive and highly collaborative approach to community-based research on which this project is based will also inform future research through sharing knowledge about the research process as well as research findings.

Challenges to Providing Fetal Anomaly Testing in a Cross-Cultural Environment: Experiences of Practitioners Caring for Aboriginal Women.

BACKGROUND: Across Australia there are substantial disparities in uptake of antenatal testing for fetal anomalies, with very low uptake observed among Aboriginal women. The reasons behind these disparities are unclear, although poorer access to testing has been reported in some communities. We interviewed health care practitioners to explore the perceived barriers to providing fetal anomaly screening to Aboriginal women. METHODS: In 2009 and 2010, in-depth interviews were undertaken with 59 practitioners in five urban and remote sites across the Northern Territory (NT) of Australia. Data were analyzed thematically. Maximum variation sampling, independent review of findings by multiple analysts, and participant feedback were undertaken to strengthen the validity of findings. RESULTS: Participants included midwives (47%), Aboriginal health practitioners (AHP) (32%), general practitioners (12%), and obstetricians (9%); almost all (95%) were female. Participants consistently reported difficulties counseling women. Explaining the concept of "risk" (of abnormalities and the screening test result) was identified as particularly challenging, because of a perceived lack of an equivalent concept in Aboriginal languages. While AHPs could assist with overcoming language barriers, they are underutilized. Participants also identified impediments to organizing testing including difficulties establishing gestational age, late presentation for care, and a lack of standardized information and training. DISCUSSION: The availability of fetal anomaly testing is challenged by communication difficulties, including a focus on culturally specific biomedical concepts, and organizational barriers to arranging testing. Developing educational activities that address the technical aspects of screening and communication skills will assist in improving access. These activities must include AHPs.

'Give us the full story': overcoming the challenges to achieving informed choice about fetal anomaly screening in Australian Aboriginal communities.

This cross-cultural qualitative study examined the ethical, language and cultural complexities around offering fetal anomaly screening in Australian Aboriginal communities. There were five study sites across the Northern Territory (NT), including urban and remote Aboriginal communities. In-depth interviews were conducted between October 2009 and August 2010, and included 35 interviews with 59 health providers and 33 interviews with 62 Aboriginal women. The findings show that while many providers espoused the importance of achieving equity in access to fetal anomaly screening, their actions were inconsistent with this ideal. Providers reported they often modified their practice depending on the characteristics of their client, including their English skills, the perception of the woman's interest in the tests and assumptions based on their risk profile and cultural background. Health providers were unsure whether it was better to tailor information to the specific needs of their client or to provide the same level of information to all clients. Very few Aboriginal women were aware of fetal anomaly screening. The research revealed they did want to be offered screening and wanted the 'full story' about all aspects of the tests. The communication processes advocated by Aboriginal women to improve understanding about screening included community discussions led by elders and educators. These processes promote culturally defined ways of sharing information, rather than the individualised, biomedical approaches to information-giving in the clinical setting. A different and arguably more ethical approach to introducing fetal anomaly screening would be to initiate dialogue with appropriate groups of women in the community, particularly young women, build relationships and utilise Aboriginal health workers. This could accommodate individual choice and broader cultural values and allow women to discuss the moral and philosophical debates surrounding fetal anomaly screening prior to the clinical encounter and within their own cultural space.