Mrs Marianne Kerr1, Mrs Victoria Sinka2, Professor Allison Tong2, Dr Jacqueline Stephens3
1The Centre For Kidney Research, Westmead, Australia, 2Sydney School of Public Health, The University of Sydney, Camperdown, Australia, 3College of Medicine and Public Health, Flinders University, Adelaide, Australia
Aim: Indigenous Peoples’ worldwide contend with both a high prevalence of chronic kidney disease (CKD) and inequitable access to culturally safe healthcare. This study aims to describe global perspectives of Indigenous Peoples’ experience of living with CKD.
Background: Indigenous Peoples CKD experience may be unique because of colonization, cultural traditions and holistic perspectives of health.
Methods: A systematic review and thematic synthesis of qualitative studies including Indigenous patients aged 18 years and over with CKD, not requiring kidney replacement therapy, was conducted using MEDLINE, Embase, PsycINFO, CINAHL, reference lists and PhD dissertations from inception to October 2021.
Results: From 12 studies involving 201 participants from four countries with a history of colonization (US, Canada, Australia and New Zealand), we identified five themes: disadvantaged by insufficient health knowledge (with subthemes of misunderstanding leading to delayed diagnosis, regret over inaction to prevent ill health, perplexed and in despair about self-management); discrimination in and apprehension of the healthcare system (paralyzed by past trauma, frustrated by racial judgments and cultural ignorance, confused by medical jargon); fear of social disconnection (unable to fulfil family responsibilities, losing capacity to contribute to community, vulnerable and isolated); relying on relatives and kinship (family-centered decision-making, deriving strength from family and community, gaining knowledge and empathy from shared experiences); and confronting barriers to transplantation (limited donor options, navigating cultural taboos).
Conclusions: Indigenous Peoples’ with CKD expressed regret about avoidable progression of their condition, were overwhelmed by the threat of dislocation from their communities, encountered discrimination and cultural misunderstanding in the healthcare system, and barriers to transplantation. Enabling involvement of relatives and kinship supports for CKD patients facilitated self-determination improving their experience. We recommend prioritizing Indigenous voices in the development of culturally specific guidelines to minimize variations in treatment and improve health outcomes of Indigenous CKD patients.
Biography:
Marianne commenced her career as a Registered Nurse but soon became interested in Public Health which led her into the area of communicable disease control and immunisation promotion. In 2005 she joined the Centre for Kidney Research at Westmead and has since worked on several NHMRC funded projects and coordinated clinical trials. She is currently working on a longitudinal cohort study looking at the prevalence of persistent risk factors for kidney and heart disease in young Aboriginal people, with plans to progress this research into a qualitative, codesign process with Aboriginal communities to reduce their burden of chronic disease.