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慢性乙型肝炎患者的污名体验及其影响:亚洲、欧洲和美国的定性研究。

Experience and impact of stigma in people with chronic hepatitis B: a qualitative study in Asia, Europe, and the United States.

机构信息

Aix-Marseille University, Jardin du Pharo, 58 bd Charles Livon, Marseille, 13284 Cedex 07, France.

Department of Public Health, Aix-Marseille University, 27 Boulevard Jean Moulin, Marseille, 13385, France.

出版信息

BMC Public Health. 2024 Feb 26;24(1):611. doi: 10.1186/s12889-023-17263-6.

Abstract

BACKGROUND

People with chronic hepatitis B (CHB) commonly experience social and self-stigma. This study sought to understand the impacts of CHB-related stigma and a functional cure on stigma.

METHODS

Adults with CHB with a wide range of age and education were recruited from 5 countries and participated in 90-minute qualitative, semi-structured interviews to explore concepts related to CHB-associated stigma and its impact. Participants answered open-ended concept-elicitation questions regarding their experience of social and self-stigma, and the potential impact of reduced CHB-related stigma.

RESULTS

Sixty-three participants aged 25 to 71 years (15 from the United States and 12 each from China, Germany, Italy, and Japan) reported emotional, lifestyle, and social impacts of living with CHB, including prejudice, marginalization, and negative relationship and work experiences. Self-stigma led to low self-esteem, concealment of CHB status, and social withdrawal. Most participants stated a functional cure for hepatitis B would reduce self-stigma.

CONCLUSIONS

CHB-related social and self-stigma are widely prevalent and affect many aspects of life. A functional cure for hepatitis B may reduce social and self-stigma and substantially improve the health-related quality of life of people with CHB. Incorporating stigma into guidelines along with infectivity considerations may broaden the patient groups who should receive treatment.

摘要

背景

慢性乙型肝炎(CHB)患者普遍经历社会和自我污名化。本研究旨在了解 CHB 相关污名和功能性治愈对污名的影响。

方法

从 5 个国家招募了年龄和教育程度广泛的 CHB 成年人,并对他们进行了 90 分钟的定性、半结构化访谈,以探讨与 CHB 相关的污名及其影响的相关概念。参与者回答了关于其社会和自我污名化体验以及减少 CHB 相关污名化潜在影响的开放性概念启发问题。

结果

63 名年龄在 25 至 71 岁的参与者(美国 15 名,中国、德国、意大利和日本各 12 名)报告了与 CHB 相关的生活带来的情感、生活方式和社会影响,包括偏见、边缘化以及负面的人际关系和工作经历。自我污名化导致自尊心低下、隐瞒 CHB 状况和社交退缩。大多数参与者表示乙型肝炎的功能性治愈将减少自我污名化。

结论

CHB 相关的社会和自我污名化普遍存在,并影响生活的许多方面。乙型肝炎的功能性治愈可能会减少社会和自我污名化,并极大地提高 CHB 患者的健康相关生活质量。将污名纳入指南以及传染性考虑因素可能会扩大应接受治疗的患者群体。

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