“我可以给谁打电话？我可以去哪里？” 在医疗体系中与晚期癌症共存：一项定性研究。
"Who can I ring? Where can I go?" Living with advanced cancer whilst navigating the health system: a qualitative study.
机构信息
Faculty of Health Sciences, Curtin School of Nursing, Curtin University, GPO Box U1987, Perth, WA, 6845, Australia.
WA Cancer Prevention Research Unit (WACPRU), School of Population Health, Faculty of Health Sciences, Curtin University, GPO Box U1987, Perth, WA, 6845, Australia.
出版信息
Support Care Cancer. 2022 Aug;30(8):6817-6826. doi: 10.1007/s00520-022-07107-1. Epub 2022 May 10.
BACKGROUND
People with advanced cancer often experience greater physical and psychosocial morbidity compared to those with early disease. Limited research has focused on their experiences within the Australian health system. The aim of this study was to explore the lived experiences of adults receiving care for advanced cancer.
METHODS
A qualitative design with a descriptive phenomenological approach was used to explore the lived experiences of people with advanced cancer following their diagnosis. Twenty-three people living with an advanced solid malignancy receiving care were referred by their oncologists to take part in an interview conducted at their home, the hospital, or over the phone.
RESULTS
Three key themes emerged relating to participants' experiences of living with advanced cancer: (1) living with a life-limiting diagnosis and uncertainty, (2) living with symptom burden and side effects, and (3) living within the health system, with two subthemes, the patient-clinician relationship, and care coordination. Participant relationships with their health professionals were particularly important and had a defining impact on whether patient experiences living with cancer were positive or negative.
CONCLUSION
People with advanced cancer experienced broad variation in their experiences navigating the health system, and their relationships with clinicians and other health professionals were important factors affecting their perceptions of their experiences. Attention to the coordination of care for people with advanced cancer is necessary to improve their experiences and improve symptom control and the management of their psychosocial burden.
背景
与早期疾病相比，晚期癌症患者往往经历更大的身体和心理社会痛苦。有限的研究集中在他们在澳大利亚卫生系统中的经历。本研究旨在探讨接受晚期癌症治疗的成年人的生活体验。
方法
采用定性设计和描述性现象学方法，探讨了诊断后晚期癌症患者的生活体验。23 名患有晚期实体恶性肿瘤的人在其肿瘤科医生的推荐下，接受了在家中、医院或通过电话进行的访谈。
结果
出现了三个与参与者经历晚期癌症相关的主要主题：（1）患有生命有限的诊断和不确定性，（2）患有症状负担和副作用，（3）在卫生系统中生活，包括两个子主题，医患关系和护理协调。参与者与他们的卫生专业人员的关系尤为重要，对患者对癌症生活的体验是积极还是消极有着决定性的影响。
结论
晚期癌症患者在浏览卫生系统方面的体验存在广泛差异，他们与临床医生和其他卫生专业人员的关系是影响他们对体验的看法的重要因素。需要注意协调晚期癌症患者的护理，以改善他们的体验，控制症状和管理他们的心理社会负担。
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