Living with Rheumatic Heart Disease at the Intersection of Biomedical and Aboriginal Worldviews

Abstract

Rheumatic heart disease (RHD) significantly impacts the lives of First Nations Australians. Failure to eliminate RHD is in part attributed to healthcare strategies that fail to understand the lived experience of RHD. To rectify this, a PhD study was undertaken in the Northern Territory (NT) of Australia, combining Aboriginal ways of knowing, being and doing with interviews (24 participants from clinical and community settings) and participant observation to privilege Aboriginal voices, including the interpretations and experiences of Aboriginal co-researchers (described in the adjunct article). During analysis, Aboriginal co-researchers identified three interwoven themes: maintaining good feelings; creating clear understanding (from good information); and choosing a good djalkiri (path). These affirm a worldview that prioritises relationships, positive emotions and the wellbeing of family/community. The findings demonstrate the inter-connectedness of knowledge, choice and behaviour that become increasingly complex in stressful and traumatic health, socioeconomic, political, historical and cultural contexts. Not previously heard in the RHD domain, the findings reveal fundamental differences between Aboriginal and biomedical worldviews contributing to the failure of current approaches to communicating health messages. Mitigating this, Aboriginal co-researchers provided targeted recommendations for culturally responsive health encounters, including: communicating to create positive emotions; building trust; and providing family and community data and health messages (rather than individualistic).

“The world is so white”: improving cultural safety in healthcare systems for Australian Indigenous people with rheumatic heart disease

“…While productive and transformative dialogue is constrained by tensions, it is in the negotiation of these tensions that new ways of working can emerge, while taking care not to polarise or expect Aboriginal people and culture to become subsumed into the biomedical worldview. Reflexivity that attends to power inequalities is important for generating new ways of working together 19,20 . That is, productive dialogue assumes engaging in respectful and honest discussions to share ideas, experiences and understandings, which may illuminate struggles at the juncture of the two knowledge systems 8 .…”

“…Reflexivity that attends to power inequalities is important for generating new ways of working together. 19,20 That is, productive dialogue assumes engaging in respectful and honest discussions to share ideas, experiences and understandings, which may illuminate struggles at the juncture of the two knowledge systems. 8 Meeting in the middle, where difference is recognised and valued, and where those in the space acknowledge unequal power relations between dominant and minority populations, can be a space of freedom.…”

“…The non‐Indigenous researchers took a standpoint of nhina, nhäma ga ŋäma (a Yolŋu [Aboriginal] concept meaning to sit with, listen and observe) 13,14 to critically explore ways of being allies during the analysis. This included dialogues, paying attention to relationships, accepting philosophical discomfort and thinking critically about power dynamics, all contributing to writing with a transformative purpose 15,16 …”

“…This included dialogues, paying attention to relationships, accepting philosophical discomfort and thinking critically about power dynamics, all contributing to writing with a transformative purpose. 15,16…”

Is the Australian primary healthcare system ready for the Rheumatic Heart Disease Endgame strategy? Data synthesis and recommendations

“…Emphasis should be on development of local place-based solutions and messaging, that are identified and led by community. 11 Recognising the strength of local Indigenous people and leadership will facilitate opportunities for co-designing interventions and solving challenges including with people affected by RHD. Data sovereignty, including capacity building for generating and using local data, will facilitate community decisionmaking and governance.…”