"All they said was my kidneys were dead"

Indigenous Australian patients' understanding of their chronic kidney disease

K ANDERSON, J DEVITT, Joan Cunningham, C Preece, A CASS

    Research output: Contribution to journalArticleResearchpeer-review

    Abstract

    Objectives: To explore the understanding of both Indigenous and non-Indigenous Australians with end-stage kidney disease (ESKD) about the cause of their disease, and how this understanding could affect patients' engagement with their treatment. Design, setting and participants: Qualitative study conducted in 2005-2006 in nine hospital renal units and 17 associated dialysis centres in four states and the Northern Territory as part of the IMPAKT (Improving Access to Kidney Transplants) study. In-depth interviews were conducted with 146 Indigenous and 95 non-Indigenous Australians with ESKD, covering personal history of illness, social and psychosocial context, attitudes to treatments including transplantation, adequacy of information and communication, and satisfaction with services. Results: Indigenous Australians were less certain about the cause of their illness and reported feeling uninformed but eager for information. They commonly reported lifestyle factors as potentially causal, with profound confusion about the role of alcohol. Indigenous Australians had considerable ambivalence towards biomedical explanations. Conclusions: Indigenous Australians are confused, frustrated and feel poorly informed about their illness. This study confirms the need to develop shared understandings about chronic kidney disease and to put in place the high-quality and appropriate educational resources that patients need.
    Original languageEnglish
    Pages (from-to)499-503
    Number of pages5
    JournalMedical Journal of Australia
    Volume189
    Issue number9
    Publication statusPublished - 2008

    Fingerprint

    Chronic Renal Insufficiency
    Chronic Kidney Failure
    Northern Territory
    Kidney
    Patient Participation
    Hospital Units
    Life Style
    Dialysis
    Emotions
    Transplantation
    Communication
    Alcohols
    Interviews
    Transplants
    Therapeutics

    Cite this

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    abstract = "Objectives: To explore the understanding of both Indigenous and non-Indigenous Australians with end-stage kidney disease (ESKD) about the cause of their disease, and how this understanding could affect patients' engagement with their treatment. Design, setting and participants: Qualitative study conducted in 2005-2006 in nine hospital renal units and 17 associated dialysis centres in four states and the Northern Territory as part of the IMPAKT (Improving Access to Kidney Transplants) study. In-depth interviews were conducted with 146 Indigenous and 95 non-Indigenous Australians with ESKD, covering personal history of illness, social and psychosocial context, attitudes to treatments including transplantation, adequacy of information and communication, and satisfaction with services. Results: Indigenous Australians were less certain about the cause of their illness and reported feeling uninformed but eager for information. They commonly reported lifestyle factors as potentially causal, with profound confusion about the role of alcohol. Indigenous Australians had considerable ambivalence towards biomedical explanations. Conclusions: Indigenous Australians are confused, frustrated and feel poorly informed about their illness. This study confirms the need to develop shared understandings about chronic kidney disease and to put in place the high-quality and appropriate educational resources that patients need.",
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    "All they said was my kidneys were dead" : Indigenous Australian patients' understanding of their chronic kidney disease. / ANDERSON, K; DEVITT, J; Cunningham, Joan; Preece, C; CASS, A.

    In: Medical Journal of Australia, Vol. 189, No. 9, 2008, p. 499-503.

    Research output: Contribution to journalArticleResearchpeer-review

    TY - JOUR

    T1 - "All they said was my kidneys were dead"

    T2 - Indigenous Australian patients' understanding of their chronic kidney disease

    AU - ANDERSON, K

    AU - DEVITT, J

    AU - Cunningham, Joan

    AU - Preece, C

    AU - CASS, A

    PY - 2008

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    N2 - Objectives: To explore the understanding of both Indigenous and non-Indigenous Australians with end-stage kidney disease (ESKD) about the cause of their disease, and how this understanding could affect patients' engagement with their treatment. Design, setting and participants: Qualitative study conducted in 2005-2006 in nine hospital renal units and 17 associated dialysis centres in four states and the Northern Territory as part of the IMPAKT (Improving Access to Kidney Transplants) study. In-depth interviews were conducted with 146 Indigenous and 95 non-Indigenous Australians with ESKD, covering personal history of illness, social and psychosocial context, attitudes to treatments including transplantation, adequacy of information and communication, and satisfaction with services. Results: Indigenous Australians were less certain about the cause of their illness and reported feeling uninformed but eager for information. They commonly reported lifestyle factors as potentially causal, with profound confusion about the role of alcohol. Indigenous Australians had considerable ambivalence towards biomedical explanations. Conclusions: Indigenous Australians are confused, frustrated and feel poorly informed about their illness. This study confirms the need to develop shared understandings about chronic kidney disease and to put in place the high-quality and appropriate educational resources that patients need.

    AB - Objectives: To explore the understanding of both Indigenous and non-Indigenous Australians with end-stage kidney disease (ESKD) about the cause of their disease, and how this understanding could affect patients' engagement with their treatment. Design, setting and participants: Qualitative study conducted in 2005-2006 in nine hospital renal units and 17 associated dialysis centres in four states and the Northern Territory as part of the IMPAKT (Improving Access to Kidney Transplants) study. In-depth interviews were conducted with 146 Indigenous and 95 non-Indigenous Australians with ESKD, covering personal history of illness, social and psychosocial context, attitudes to treatments including transplantation, adequacy of information and communication, and satisfaction with services. Results: Indigenous Australians were less certain about the cause of their illness and reported feeling uninformed but eager for information. They commonly reported lifestyle factors as potentially causal, with profound confusion about the role of alcohol. Indigenous Australians had considerable ambivalence towards biomedical explanations. Conclusions: Indigenous Australians are confused, frustrated and feel poorly informed about their illness. This study confirms the need to develop shared understandings about chronic kidney disease and to put in place the high-quality and appropriate educational resources that patients need.

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