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德国乙肝患者的耻辱感认知:横断面调查

Perceptions of Stigma Among Patients With Hepatitis B in Germany: Cross-Sectional Survey.

作者信息

Zimmermann Bettina M, Willem Theresa, Rost Michael, Matthes Nina, Buyx Alena

机构信息

Institute of History and Ethics in Medicine, TUM School of Medicine and Health, Technical University of Munich, Ismaninger Str. 22, Munich, 81675, Germany, 49 8941404041.

Institute for Molecular Immunology, TUM School of Medicine and Health, Klinikum Rechts der Isar, Technical University of Munich, Munich, Germany.

出版信息

JMIR Form Res. 2025 Jun 13;9:e66379. doi: 10.2196/66379.

Abstract

BACKGROUND

Many studies find associations between hepatitis B and stigma, but studies from the Western European context are lacking. Based on available studies, we hypothesized that younger age, higher education, male gender, higher privacy needs, and non-German mother tongue were positively associated with perceived hepatitis B-related stigma.

OBJECTIVE

This study aims to describe the prevalence of perceived social stigma among patients with hepatitis B in Germany and to assess what factors are associated with perceptions of hepatitis B-related stigma.

METHODS

Applying the short version of the Berger stigma scale, we surveyed 195 patients with hepatitis B about their perceptions of hepatitis B-related stigma, privacy needs, and demographic variables through a paper-based questionnaire. Venue-based recruitment of adult patients diagnosed with acute or chronic hepatitis B was implemented at 3 clinical centers in Germany. Patients who could not read German were excluded from the study.

RESULTS

From the 195 valid questionnaires, 45.1% (88/195) of participants identified as female, 36.6% (71/195) had a high school diploma, and 56.9% (111/195) reported a mother tongue other than German. The mean (SD) stigma score throughout the sample was 5.52 (6.02; range 0-24) and the median was 3.50 (IQR=9.75). Regression analysis revealed that non-German mother tongue, individual data privacy needs, and participants' secrecy regarding their hepatitis B diagnosis independently predicted perceived hepatitis B-related stigma. More precisely, the higher the data privacy need and the more secret the hepatitis B diagnosis, the higher the perceived stigma, and perceived stigma was higher for patients with a non-German mother tongue. Age, gender, and education were no predictors of perceived stigma.

CONCLUSIONS

The surveyed patients with hepatitis B in Germany reported lower levels of hepatitis B-related stigma than found in other studies conducted in Asian countries. The association with non-German mother tongue indicates an important cultural and social component in the perception of stigma. Community-based interventions and the sensibilization of health care professionals might help overcome perceptions of stigma among hepatitis B-affected populations.

摘要

背景

许多研究发现了乙肝与污名化之间的关联,但缺乏来自西欧背景的研究。基于现有研究,我们假设年龄较小、教育程度较高、男性、隐私需求较高以及非德语母语与感知到的乙肝相关污名呈正相关。

目的

本研究旨在描述德国乙肝患者中感知到的社会污名的患病率,并评估哪些因素与乙肝相关污名的认知有关。

方法

我们应用伯杰污名量表的简版,通过纸质问卷对195名乙肝患者进行了调查,询问他们对乙肝相关污名、隐私需求和人口统计学变量的看法。在德国的3个临床中心实施了基于场所的成年急性或慢性乙肝诊断患者招募。无法阅读德语的患者被排除在研究之外。

结果

在195份有效问卷中,45.1%(88/195)的参与者为女性,36.6%(71/195)拥有高中文凭,56.9%(111/195)报告母语不是德语。整个样本的平均(标准差)污名评分为5.52(6.02;范围0 - 24),中位数为3.50(四分位距 = 9.75)。回归分析显示,非德语母语、个人数据隐私需求以及参与者对其乙肝诊断的保密程度独立预测了感知到的乙肝相关污名。更确切地说,数据隐私需求越高且乙肝诊断越保密,感知到的污名越高;非德语母语的患者感知到的污名更高。年龄、性别和教育程度不是感知污名的预测因素。

结论

在德国接受调查的乙肝患者报告的乙肝相关污名水平低于在亚洲国家进行的其他研究中的水平。与非德语母语的关联表明在污名认知中存在重要的文化和社会因素。基于社区的干预措施以及医护人员的宣传教育可能有助于克服乙肝感染人群中的污名认知。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/d887/12180674/2eadda7fe31e/formative-v9-e66379-g001.jpg

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