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“他们把我当麻风病人一样对待”。丙型肝炎患者的污名化与生活质量

"They treated me like a leper". Stigmatization and the quality of life of patients with hepatitis C.

作者信息

Zickmund Susan, Ho Evelyn Y, Masuda Masahiro, Ippolito Laura, LaBrecque Douglas R

机构信息

Department of Internal Medicine, The University of Iowa College of Medicine, Iowa City, IA 52242, USA.

出版信息

J Gen Intern Med. 2003 Oct;18(10):835-44. doi: 10.1046/j.1525-1497.2003.20826.x.

Abstract

OBJECTIVE

Hepatitis C virus is the most prevalent chronic blood-borne infection in the United States, typically acquired through contaminated blood products or needle sharing. We hypothesized that patients with chronic hepatitis C infection experience stigmatization independent of mode of acquisition and that it negatively affects quality of life.

DESIGN

Cross-sectional observation study.

SETTING

Specialty clinic in a tertiary referral hospital.

PATIENTS

Two hundred and ninety outpatients diagnosed with chronic hepatitis C infection and seen in a hepatology clinic. Thirty participants were excluded because of missing data.

MEASUREMENTS AND MAIN RESULTS

Patients were asked to complete a demographic profile, a semistructured interview, the Sickness Impact Profile, and the Hospital Anxiety Depression Scale. A team of two blinded coders analyzed the interviews. A total of 147 of the 257 study patients experienced stigmatization that they attributed to the disease. Women were more likely to report perceived stigmatization than men (P <.05). Age, education, professional status, and mode of infection did not influence the likelihood of stigmatization. Stigmatization was associated with higher anxiety (P <.01) and depression (P <.01), worsened quality of life (P <.01), loss of control (P <.01), and difficulty coping (P <.01). Individuals who experienced stigmatization also mentioned problems in their health care (P <.01) and work environment (P <.01) as well as with family members (P <.01).

CONCLUSION

Stigmatization is a very common emotionally burdensome experience for patients with hepatitis C, which can erode social support. As it penetrates even into the health care environment, physicians and other care providers should be aware of the existence and impact of such negative stereotyping.

摘要

目的

丙型肝炎病毒是美国最常见的慢性血源性感染,通常通过受污染的血液制品或共用针头感染。我们假设慢性丙型肝炎感染患者会受到污名化,且与感染方式无关,并且这会对生活质量产生负面影响。

设计

横断面观察研究。

地点

一家三级转诊医院的专科诊所。

患者

290名在肝病诊所被诊断为慢性丙型肝炎感染的门诊患者。30名参与者因数据缺失被排除。

测量与主要结果

要求患者完成一份人口统计学资料、一次半结构化访谈、疾病影响概况量表以及医院焦虑抑郁量表。由两名盲法编码员组成的团队分析访谈内容。257名研究患者中共有147人经历了他们认为是由该疾病导致的污名化。女性比男性更有可能报告感知到的污名化(P<.05)。年龄、教育程度、职业状况和感染方式均不影响污名化的可能性。污名化与更高的焦虑(P<.01)、抑郁(P<.01)、生活质量恶化(P<.01)、失去控制感(P<.01)以及应对困难(P<.01)相关。经历污名化的个体还提到了他们在医疗保健(P<.01)、工作环境(P<.01)以及与家庭成员相处方面(P<.01)存在问题。

结论

污名化对于丙型肝炎患者来说是一种非常常见的情感负担沉重的经历,它会削弱社会支持。由于其甚至渗透到医疗保健环境中,医生和其他护理人员应该意识到这种负面刻板印象的存在及其影响。

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