Population Health Department, QIMR Berghofer Medical Research Institute, Herston, Queensland, Australia.
Centre for Aboriginal Studies, Curtin University, Perth, WA, Australia.
J Clin Nurs. 2023 Jun;32(11-12):2559-2574. doi: 10.1111/jocn.16302. Epub 2022 Apr 21.
To explore the care experiences of Aboriginal and Torres Strait Islander Australians diagnosed with cirrhosis with a focus on support needed.
Cirrhosis disproportionately affects Indigenous Australians, and liver diseases contribute to the mortality gap between Indigenous and other Australian adults.
A qualitative study.
Using yarning methods, Indigenous patients (n = 13) and support persons (n = 3) were interviewed by an Aboriginal researcher during April-July, 2020. Thematic analysis was used to identify common themes using an inductive approach.
Six themes emerged. (1) Experience of diagnosis. This theme included stories of delays in the system, self-awareness of signs and symptoms and relief of being diagnosed. (2) 'Shame, shame, shame'. Experiences of prejudices and discrimination from health professionals, the lack of understanding of cirrhosis among health professionals, and stories about alcohol cessation and counselling around alcohol cessation. (3) Health literacy. Participants' understanding of cirrhosis was variable. While the importance of knowledge was recognised, 'what works for someone might not work for others'. Several patients partnered with their support persons and clinicians to bridge the health literacy gap. (4) Sources of support included family and friends, transport facilities, health professionals and peers. (5) Positive and negative aspects of communication and patient consultation were discussed. (6) Psychosocial counselling to 'look after the caring side'. The need for more mental health care services was raised.
Barriers related to poor health literacy, stigma and lack of practical and emotional support, and issues with communication and patient consultation, may lead to inequitable access to cirrhosis care and treatment for Indigenous Australians.
Gaining knowledge of the experiences of Indigenous Australians with cirrhosis is important for providing patient-centred and culturally appropriate care. Liver specialist nurses have an important role in bridging the health literacy gap and in supporting Indigenous patients and families.
探讨澳大利亚原住民和托雷斯海峡岛民（Aboriginal and Torres Strait Islander Australians）肝硬化患者的护理体验，重点关注其所需的支持。
肝硬化在澳大利亚原住民中发病率较高，肝脏疾病是导致原住民和其他澳大利亚成年人死亡率差距的原因之一。
定性研究。
在 2020 年 4 月至 7 月期间，一名土著研究人员采用聊天的方法对 13 名土著患者和 3 名支持人员进行了访谈。采用归纳法进行主题分析，以确定常见主题。
出现了 6 个主题。（1）诊断经历。该主题包括在系统中延迟的故事、对症状的自我意识以及被诊断后的释然。（2）“羞耻，羞耻，羞耻”。患者经历了来自卫生保健专业人员的偏见和歧视、卫生保健专业人员对肝硬化缺乏了解、以及关于戒酒和戒酒咨询的故事。（3）健康素养。参与者对肝硬化的理解各不相同。尽管认识到知识的重要性，但“对某人有效的方法可能对其他人无效”。一些患者与他们的支持人员和临床医生合作，以弥合健康素养差距。（4）支持来源包括家人和朋友、交通设施、卫生保健专业人员和同龄人。（5）讨论了沟通和患者咨询的积极和消极方面。（6）“照顾照顾者方面”的心理社会咨询。人们提出了对更多精神保健服务的需求。
与健康素养低、耻辱感和缺乏实际支持和情感支持、沟通和患者咨询问题相关的障碍，可能导致澳大利亚原住民获得肝硬化护理和治疗的机会不平等。
了解澳大利亚原住民肝硬化患者的体验对于提供以患者为中心和文化适宜的护理非常重要。肝脏专科护士在弥合健康素养差距以及支持土著患者和家庭方面发挥着重要作用。
