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化脓性汗腺炎患者对耻辱感和自我耻辱感的认知视角

Perspectives On Perceived Stigma And Self-Stigma In Patients With Hidradenitis Suppurativa.

作者信息

Koumaki Dimitra, Efthymiou Ourania, Bozi Evangelia, Katoulis Alexander C

机构信息

Hidradenitis Suppurativa Clinic, 2nd Department of Dermatology and Venereology, "Attikon" General University Hospital, National and Kapodistrian University of Athens, Medical School, Athens, Greece.

出版信息

Clin Cosmet Investig Dermatol. 2019 Oct 16;12:785-790. doi: 10.2147/CCID.S180036. eCollection 2019.

Abstract

OBJECTIVE

To review current knowledge on how patients with hidradenitis suppurativa (HS) experience stigmatization, as well as on its associations with clinical and psychosocial characteristics of the disease. A better understanding of these may help dermatologists improve screening and management for the benefit of HS patients.

METHODS

A MEDLINE search using the terms stigmatization, perceived stigma, self-stigma, and HS/acne inversa.

RESULTS

Stigmatization is common among HS patients and has a strong psychosocial impact, which is often disproportional to the extent and severity of skin involvement. Stigmatization in HS has many faces and it is more prevalent and more severe than most other skin diseases. Stigmatization of HS patients is due not only to the distressing symptoms of pain, itch malodorous discharge, and disfiguring scars but also to the lack of knowledge about HS on part of the general public.

CONCLUSION

Stigma is a significant contributor to the impairment of quality of life and psychiatric co-morbidities commonly seen in patients with HS. Therefore, evaluation for stigma and formulation of strategies to prevent stigmatization and treat its consequences, in the context of a multidisciplinary approach, may ameliorate considerably the lives of HS patients.

摘要

目的

回顾目前关于化脓性汗腺炎(HS)患者如何经历污名化,以及污名化与该疾病临床和心理社会特征之间关联的知识。更好地理解这些内容可能有助于皮肤科医生改进筛查和管理,以造福HS患者。

方法

使用污名化、感知污名、自我污名以及HS/反向痤疮等术语在MEDLINE数据库进行检索。

结果

污名化在HS患者中很常见,并且具有强烈的心理社会影响,这种影响往往与皮肤受累的范围和严重程度不相称。HS中的污名化具有多种表现形式,且比大多数其他皮肤病更为普遍和严重。HS患者遭受污名化不仅是因为疼痛、瘙痒、恶臭分泌物和毁容性瘢痕等令人痛苦的症状,还因为公众对HS缺乏了解。

结论

污名是导致HS患者生活质量受损和常见精神共病的重要因素。因此,在多学科方法的背景下,评估污名并制定预防污名化及其后果的策略,可能会极大地改善HS患者的生活。

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