Community-based participatory action research on rheumatic heart disease in an Australian Aboriginal homeland: Evaluation of the ‘On track watch’ project

Haynes, Emma; Marawili, Minitja; Marika, Brendan Makungun; Mitchell, Amy M.; Phillips, Jodi; Bessarab, Dawn; Walker, Roz; Cook, Jeff; Ralph, Anna P.

doi:10.1016/j.evalprogplan.2019.02.010

Cited by 53 publications

(73 citation statements)

References 48 publications

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“…The majority of publications identified sociological factors impacting on people affected by RHD. Poverty was described as a significant barrier to making health-enhancing choices, including food choices [8,9,27,28]. As stated in Gruen, there is no "escape from the hardship of daily existence and few opportunities to improve their situation" [24] in settings of poverty.…”

Section: Lived Realities Of Children Adults and Families Affected Bymentioning

confidence: 99%

“…The overall collective voices in the publications show that connecting with primary healthcare is fraught with experiences of racism and powerlessness. Ongoing colonisation and the impact of systemic racism were described as contributing to poor experiences of RHD and difficulties in accessing primary healthcare [8,10,25,28,32,33]. In essence, those living with ARF and RHD are doing so in the midst of a system mismatched to their needs, and thus 'compromising care' [33].…”

Section: Experiences Of Power Differences and Racismmentioning

confidence: 99%

“…The perception, held by healthcare providers, individuals, families and communities regarding the inevitability of illness and skin sores, contributes to care being neither sought nor offered, and a sense of powerlessness for individuals and families [8,9,25,28,30,33]. This was so profound that normalisation seemed to act almost as a determinant of health in its own right.…”

Section: Experiences Of Power Differences and Racismmentioning

confidence: 99%

“…Whilst cultural obligations add to the many competing demands of daily life, they also provide positive experiences [26][27][28] and living in communities can strengthen this connection to culture [9,[25][26][27][28]30]. Despite the tendency to problematise Indigenous health half (7/15) of the reviewed publications included descriptions of protective factors of Indigenous ways of being and doing [9,[25][26][27][28]30,35]. These social and cultural strengths within Indigenous groups may mitigate some of the difficulties of living with RHD (see also sub-theme: Factors contributing to positive experiences of health-care).…”

Section: Indigenous Culture Knowledge and Strengthsmentioning

confidence: 99%

“…Pregnant Aboriginal women quoted in Belton et al, 2016 [9] These strengths, as described above, are culturally mandated and connect to local knowledge and languages. They are also relationship-based and include ways of caring for each other and the strengths gained from being cemented as part of a group [9,25,27,28,35].…”

Section: Indigenous Culture Knowledge and Strengthsmentioning

confidence: 99%

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

Haynes,

Mitchell,

Enkel

et al. 2020

IJERPH

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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.

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Section: Lived Realities Of Children Adults and Families Affected Bymentioning

confidence: 99%