AN ABORIGINAL KIDNEY CARE TOGETHER IMPROVING OUTCOMES NOW (AKction2) CO-DESIGNED STUDY - QUALITATIVE METHODOLOGIES EXPLORING PREGNANCY CARE FOR FIRST NATIONS WOMEN WITH KIDNEY DISEASE.

Pregnancy, a time of deep cultural significance, remains an unrepresented area in research and care for First Nations women (Aboriginal and Torres Strait Islander women) with kidney disease in Australia. Qualitative studies are urgently needed; however, a critical gap exists in methodological guidance. Existing studies rely on Western paradigms, lacking co-designed approaches with First Nations sovereignty. This study presents the first methodological framework to inform future national and international research, privileging all First Nations women with kidney disease voices in this sacred and under-researched area.

Our aim was to develop an evidence-based co-designed methodology for qualitative studies of pregnancy in First Nations Australians.

This participatory study was co-led with the AKction Reference Team– a group of First Nations people with lived kidney disease, researchers and clinicians. Participatory action research principles and Aboriginal methodologies guided the study design with decolonising frameworks. First Nations specific quality appraisal tools were applied to ensure governance and safety.

Nine First Nations women participated, recruited from close networks of the AKction team. They were located across the lands of the Kaurna, Ngarrindjeri, Wulgurukaba, Bindal, Gimuy Walubara Yidinji, Yuin and Noongar people (states of South Australia, Western Australia, New South Wales and Queensland) in Australia. Data collection involved focus groups and one-to-one sessions co-led with First Nations researchers. Yarning, Ganma and Dadirri(deep listening) methodologies facilitated culturally safe environments through reflection, listening and creative activities. 

Five core themes emerged:

1. Maternal health research as a priority: Participants emphasised an urgent need for studies in this space to inform and improve obstetric and kidney care for First Nation’s women. 

2. Prioritising Aboriginal sovereignty and community benefit: Future research should be Aboriginal-led, owned, culturally safe, and inclusive of those with lived disease - research to be with not of Aboriginal women. Concepts of community feedback loops, transparent authorship, and translatable outcomes to improve maternal care, in particular, in regional communities with high prevalence of kidney disease were emphasised.

3. Aboriginal terminology and definitions: Participants explained motherhood is collective, extending beyond biological offspring. Researchers need to recognise that parenthood can be experienced, independently of pregnancy and childbirth in Aboriginal communities.

4. Aboriginal research methods with culturally sensitive issues: Long term trust and female led researchers was identified a key for qualitative studies of culturally sensitive issues. Employing Daddiri(deep listening), drawing (deep reflection) were highlighted as effective in fostering engagement and safe spaces.

5. Managing non-Aboriginal research cognitive biases: There was a unifying concern of non-Aboriginal researchers’ inherent assumptions, potential biases and a history of under-powering of First Nations women with kidney disease. The phrase from the focus group, “We might have kidney disease, but there is still life to live. We are still women who need to have babies and families” underscores the significance of a strength based approach that centres Aboriginal voices.

This study presents a culturally safe, co-designed framework for future qualitative studies of First Nations women with kidney disease of sacred topics. By prioritising First Nations leadership, ownership, methodologies and respect, this study provides a vital template for future national and international research to improve maternal health care for all First Nations women with kidney disease.