参与临床试验的慢性丙型肝炎患者的疾病体验
Illness Experience of Patients with Chronic Hepatitis C Participating in Clinical Trials.
作者信息
Cho Hoo-Jeung, Park Euna
机构信息
Division of Gastroenterology, Clinical Research Center, Pusan National University Hospital, Busan, Korea.
Department of Nursing, Pukyong National University, Busan, Korea.
出版信息
Osong Public Health Res Perspect. 2016 Dec;7(6):394-399. doi: 10.1016/j.phrp.2016.11.001. Epub 2016 Nov 9.
OBJECTIVES
To understand the illness experience of patients with chronic hepatitis C participating in clinical trials in the sociocultural context of Korea in an in-depth and comprehensive manner.
METHODS
A focused ethnography approach was used to discover the pattern of illness experience of patients with chronic hepatitis C in the cultural background of Korea. Interviews were conducted with 11 patients with chronic hepatitis C participating in clinical trials and the collected data were analyzed with the domain analysis, taxonomical analysis, componential analysis, and theme analysis proposed by Spradley.
RESULTS
With the cultural theme of "less-known illness, less-familiar illness," four categories were derived: "my illness discovered by accident," "shaken life," "scary but inevitable treatment method," and "precious life that can't be wasted," along with 12 properties.
CONCLUSION
Public campaigns or education programs are needed to meet the needs for information on the disease for patients with chronic hepatitis C participating in clinical trials and help the general public acquire knowledge or change view on this disease.
目的
深入、全面地了解在韩国社会文化背景下参与临床试验的慢性丙型肝炎患者的患病经历。
方法
采用聚焦民族志方法，以发现韩国文化背景下慢性丙型肝炎患者的患病经历模式。对11名参与临床试验的慢性丙型肝炎患者进行了访谈，并运用斯普拉德利提出的领域分析、分类分析、成分分析和主题分析方法对收集到的数据进行了分析。
结果
以“鲜为人知的疾病，不太熟悉的疾病”这一文化主题，得出了四类：“偶然发现自己的疾病”“生活动摇”“可怕但不可避免的治疗方法”和“不能浪费的宝贵生命”，以及12个属性。
结论
需要开展公众宣传活动或教育项目，以满足参与临床试验的慢性丙型肝炎患者对疾病信息的需求，并帮助公众获取有关这种疾病的知识或改变对此疾病的看法。
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