Strategies to date have been ineffective in reducing high rates of rheumatic heart disease (RHD) in Australian Aboriginal people; a disease caused by streptococcal infections. A remote Aboriginal community initiated a collaboration to work towards elimination of RHD. Based in 'both-way learning' (reciprocal knowledge co-creation), the aim of this study was to co-design, implement and evaluate community-based participatory action research (CBPAR) to achieve this vision. Activities related to understanding and addressing RHD social determinants were delivered through an accredited course adapted to meet learner and project needs. Theory-driven evaluation linking CBPAR to empowerment was applied. Data collection comprised focus groups, interviews, observation, and co-development and use of measurement tools such as surveys. Data analysis utilised process indicators from national guidelines for Aboriginal health research, and outcome indicators derived from the Wallerstein framework. Findings include the importance of valuing traditional knowledges and ways of learning such as locally-meaningful metaphors to explore unfamiliar concepts; empowerment through critical thinking and community ownership of knowledge about RHD and research; providing practical guidance in implementing empowering and decolonising principles / theories. Lessons learned are applicable to next stages of the RHD elimination strategy which must include scale-up of community leadership in research agenda-setting and implementation.
In common with colonized Indigenous people worldwide, many Australian Aboriginal people experience inequitable health outcomes. While the commitment and advocacy of researchers and health practitioners has resulted in many notable improvements in policy and practice, systemic and structural impediments continue to restrain widespread gains in addressing Indigenous health injustices. We take Rheumatic Heart Disease (RHD), a potent marker of extreme health inequity, as a case study, and critically examine RHD practitioners' perspectives regarding the factors that need to be addressed to improve RHD prevention and care. This study is an important explanatory component of a broader study to inform new clinical practices, and health system strategies and policies to reduce RHD. A decolonising, critical medical anthropology (CMA) analysis of findings from 22 RHD practitioner in-depth interviews conducted in May 2016 revealed both practitioners' perceptions of health system shortcomings and a sense of hopelessness and powerlessness to transform existing health system inequities, the negative impacts of which were subsequently confirmed in a separate study of RHD patients' lived realities. We reveal how biomedical dominance, normalized deficit discourses and systemic racism influence the current policy and practice landscape, narrowing the intercultural space for productive dialogue and reinforcing the conditions that cause disease. To counter biomedical approaches that contribute to existing health inequities in health care, we recommend localized, strength-based, community-led research projects focused on actions that use critical decolonizing social science approaches to achieve system change. We demonstrate the importance of integrating biological and social sciences approaches in research, education/training, and practice to: 1) be guided by Indigenous strengths, knowledges and worldview, and 2) adopt a critical reflexive stance to examine systems, structures and practices. Such an approach facilitates productive cross-cultural dialogue and social transformation; providing direction and hope to practitioners, enhancing their knowledge, skills and capacity and improving Aboriginal health outcomes.
In Australia, Aboriginal children almost entirely bear the burden of acute rheumatic fever (ARF) which often leads to rheumatic heart disease (RHD), a significant marker of inequity in Indigenous and non-Indigenous health experiences. Efforts to eradicate RHD have been unsuccessful partly due to lack of attention to voices, opinions and understandings of the people behind the statistics. This systematic review presents a critical, interpretive analysis of publications that include lived experiences of RHD. The review approach was strengths-based, informed by privileging Indigenous knowledges, perspectives and experiences, and drawing on Postcolonialism and Critical Race Theory. Fifteen publications were analysed. Nine themes were organised into three domains which interact synergistically: sociological, disease specific and health service factors. A secondary sociolinguistic analysis of quotes within the publications articulated the combined impact of these factors as ‘collective trauma’. Paucity of qualitative literature and a strong biomedical focus in the dominant narratives regarding RHD limited the findings from the reviewed publications. Noteworthy omissions included: experiences of children/adolescents; evidence of Indigenous priorities and perspectives for healthcare; discussions of power; recognition of the centrality of Indigenous knowledges and strengths; and lack of critical reflection on impacts of a dominant biomedical approach to healthcare. Privileging a biomedical approach alone is to continue colonising Indigenous healthcare.
20 September 2014 in International Journal for Equity in Health
The substantial gap in life expectancy between Indigenous and non-Indigenous Australians has been slow to improve, despite increased dedicated funding. Partnerships between Australian Indigenous and mainstream Western biomedical organisations are recognised as crucial to improved Indigenous health outcomes. However, these partnerships often experience challenges, particularly in the context of Australia´s race and political relations. We examined the relevant literature in order to identify the potential role for social theory and theoretical models in developing and maintaining intercultural partnerships. Having identified relevant theoretical models, terms and possible key words, a range of databases were searched and relevant articles selected for inclusion. An integrative approach brought together theoretical models and practical considerations about working in partnership, to inform our analysis of the literature. Considering partnerships between Australian Indigenous and mainstream health organisations as `bi-cultural´ is simplistic: rather they are culturally diverse across social and professional levels. As such, partnerships between Australian Indigenous and mainstream health organisations may be better conceptualised as `intercultural´, operating across diverse and shifting cultural frames of reference. Theories identified by this review as useful to guide partnerships include power relations, reflexivity and dialogue, borders and strangeness and the intercultural or third space. This paper examines how these theoretical approaches can develop understanding and improve intercultural engagement between mainstream and Australian Indigenous partners in healthcare. Rather than viewing partnerships merely as arrangements between disembodied entities, sometimes contractual in nature, they are better seen as activities between people and organisations and essentially dependent on relationships, occurring in an intercultural space that is complex, dynamic and subject to changes in power relations. Theoretical models aiming to understand and improve partnerships indicate the complexity of building and maintaining such partnerships and stress the importance of understanding factors that can strengthen or derail their effectiveness. While the theories presented here are by no means exhaustive, they nonetheless provide a series of entry points through which to engage with the issue and expand the discourse. This approach allows the transformative nature of Australian Indigenous-mainstream `culture´ to be explored and understood in its lived expression; rather than relegated to prescriptive categories.
Research remains a site of struggle for First Nations peoples globally. Biomedical research often reinforces existing power structures, perpetuating ongoing colonisation by dominating research priorities, resource allocation, policies, and services. Addressing systemic health inequities requires decolonising methodologies to facilitate new understandings and approaches. These methodologies promote a creative tension and productive intercultural dialogue between First Nations and Western epistemologies. Concurrently, the potential of critical theory, social science, and community participatory action research approaches to effectively prioritise First Nations peoples’ lived experience within the biomedical worldview is increasingly recognised. This article describes learnings regarding research methods that enable a better understanding of the lived experience of rheumatic heart disease—an intractable, potent marker of health inequity for First Nations Australians, requiring long-term engagement in the troubled intersection between Indigenist and biomedical worldviews. Working with Yolŋu (Aboriginal) co-researchers from remote Northern Territory (Australia), the concept of ganma (turbulent co-mingling of salt and fresh water) was foundational for understanding and applying relationality (gurrutu), deep listening (nhina, nhäma ga ŋäma), and the use of metaphors—approaches that strengthen productive dialogue, described by Yolŋu co-researchers as weaving a ‘mat we can all sit on’. The research results are reported in a subsequent article.
Background: Despite extensive literature demonstrating differing experiences in menopause around the world, documentation of the experience of menopause in Australian Aboriginal women is scarce, and thus their menopausal experience is relatively unknown. This study aimed to understand Australian Aboriginal women’s understanding and experience of menopause and its impact on their lives. Methods: The study was an exploratory qualitative study. Twenty-five Aboriginal women were recruited from a regional centre in the Mid-West region of Western Australia using opportunistic and snowballing sampling. Interviews and focus group discussions were undertaken from February 2011 to February 2012 using open-ended questioning with a yarning technique. Thematic analysis was undertaken of the transcribed interviews. Results: A number of themes were revealed. These related to the language used, meanings and attitudes to menopause, symptoms experienced, the role of men, a lack of understanding, coping mechanisms and the attribution of menopausal changes to something else. The term “change of life” was more widely recognised and signified the process of ageing, and an associated gain of respect in the local community. A fear of menopausal symptoms or uncertainty about their origin was also common. Overall, many women reported insufficient understanding and a lack of available information to assist them and their family to understand the transition. Conclusion: There are similarities between Aboriginal and non-Aboriginal experiences of menopause, including similar symptom profiles. The current language used within mainstream health settings may not be appropriate to this population if it fails to recognise the importance of language and reflect the attributed meaning of menopause. The fear of symptoms and uncertainty of their relationship to menopause demonstrated a need for more information which has not adequately been supplied to Australian Aboriginal women through current services. While this study is with a select population of Aboriginal Australian women, it reveals the importance of acknowledging differences, particularly in use of language to convey ideas and support Aboriginal women experiencing menopause.