Dissemin is shutting down on January 1st, 2025

Published in

MDPI, International Journal of Environmental Research and Public Health, 4(17), p. 1347, 2020

DOI: 10.3390/ijerph17041347

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Voices behind the Statistics: A Systematic Literature Review of the Lived Experience of Rheumatic Heart Disease

Journal article published in 2020 by Emma Haynes, Alice Mitchell, Stephanie Enkel ORCID, Rosemary Wyber, Dawn Bessarab
This paper is made freely available by the publisher.
This paper is made freely available by the publisher.

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Data provided by SHERPA/RoMEO

Abstract

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.