"All they said was my kidneys were dead": Indigenous Australian patients' understanding of their chronic kidney disease
"All they said was my kidneys were dead": Indigenous Australian patients' understanding of their chronic kidney disease
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DOI：
10.5694/j.1326-5377.2008.tb02144.x
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发表时间：
2008-11-03
影响因子：
11.4
通讯作者：
Cass, Alan
中科院分区：
文献类型：
--
作者：
Anderson, Kate;Devitt, Jeannie;Cass, Alan
目的：探讨患有终末期肾病 (ESKD) 的土著和非土著澳大利亚人对其疾病原因的理解，以及这种理解如何影响患者对治疗的参与。 设计、背景和参与者：2005-2006 年在四个州和北领地的 9 个医院肾脏科和 17 个相关透析中心进行的定性研究，作为 IMPAKT（改善肾脏获取机会）的一部分移植）研究。对 146 名患有 ESKD 的澳大利亚原住民和 95 名非原住民进行了深入访谈，内容涵盖个人病史、社会和社会心理背景、对包括移植在内的治疗的态度、信息和沟通的充分性以及对服务的满意度。 结果：澳大利亚原住民对其疾病原因不太确定，并表示感觉不知情，但渴望获得信息。他们通常将生活方式因素报告为潜在的因果关系，但对酒精的作用却深感困惑。澳大利亚原住民对生物医学解释抱有相当矛盾的态度。结论：澳大利亚原住民感到困惑、沮丧，并且对自己的疾病了解甚少。这项研究证实有必要就慢性肾脏病达成共识，并提供患者所需的高质量和适当的教育资源。
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.