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

Emma Haynes, Alice Mitchell, Stephanie Enkel, Rosemary Wyber and Dawn Bessarab
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Emma Haynes: School of Population and Global Health, The University of Western Australia, Perth 6000, Australia
Alice Mitchell: Menzies School of Health Research, Charles Darwin University, Darwin 0810, Australia
Stephanie Enkel: Telethon Kids Institute, Perth 6000, Australia
Rosemary Wyber: Telethon Kids Institute, Perth 6000, Australia
Dawn Bessarab: Centre for Aboriginal Medical and Dental Health, The University of Western Australia, Perth 6000, Australia

IJERPH, 2020, vol. 17, issue 4, 1-25

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.

Keywords: rheumatic heart disease; lived experience; Indigenous; collective trauma; adolescent; power; strengths-based (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2020
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (2)

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Persistent link: https://EconPapers.repec.org/RePEc:gam:jijerp:v:17:y:2020:i:4:p:1347-:d:322676

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