"That heart sickness"
: exploring Aboriginal young people's experiences of rheumatic fever care from childhood to adulthood

  • Alison Gray Mitchell

    Student thesis: Doctor of Philosophy (PhD) - CDU


    The burden of rheumatic fever is almost entirely borne by young Aboriginal people in northern and remote locations in Australia while it has been nearly eradicated in other parts of the nation. Epidemiological studies are vital for highlighting disease patterns and for advocating for action. Equally important is to understand how the disease and health care dynamics are perceived by those affected by the condition in order to gain a more complete picture and to inform nuanced care, prevention and advocacy strategies. These include strategies for administering the regular painful penicillin injections that young people endure for at least one decade once they have acquired rheumatic fever, to protect their hearts.

    An ethnographic study was undertaken to explore the perceptions, knowledge and understandings that young Aboriginal people and their families have of rheumatic fever and resultant rheumatic heart disease, as well as the health care they receive, including the longterm injection regimen. The ethnography was undertaken in four remote sites in the Northern Territory between 2013 and 2016 as part of a larger community-randomised trial.

    No families understood these physiologically complex diseases or knew why the injections were needed, apart from to “keep their heart strong”. In addressing these diseases, it is paramount that the indelible sociocultural characteristics of the affected population, such as language and world view, are recognised and valued and that health care design takes account of these characteristics rather than simply practising biomedicine. Recognising the deep historical and political stories of the affected populations is vital for understanding the determinants driving rheumatic fever. The complexity of risk factors means that collaboration with other disciplines outside of biomedicine is required to work towards real change. But, crucially, improvements must be undertaken in proper partnership with local Aboriginal people.
    Date of AwardNov 2017
    Original languageEnglish
    SupervisorSuzanne Belton (Supervisor)

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