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白癜风对印度患者的心理社会影响。

The psychosocial impact of vitiligo in Indian patients.

机构信息

Department of Dermatology and Venereology, All India Institute of Medical Sciences, New Delhi, India.

出版信息

Indian J Dermatol Venereol Leprol. 2013 Sep-Oct;79(5):679-85. doi: 10.4103/0378-6323.116737.

Abstract

BACKGROUND

Vitiligo has a special significance in Indian patients both because depigmentation is obvious on darker skin and the enormous stigma associated with the disease in the culture.

AIMS

This study was carried out to determine the beliefs about causation, aspects of the disease that cause concern, medical, and psychosocial needs of the patients, expectation from treatment and from the treating physician, and effects of disease on the patient's life.

METHODS

Semi-structured interviews were conducted in 50 patients with vitiligo. Purposive sampling was used to select subjects for the study. Each interview was recorded on an audio-cassette and transcripts were analyzed to identify significant issues and concerns.

RESULTS

Patients had a range of concerns regarding their disease such as physical appearance, progression of white patches onto exposed skin and the whole body, ostracism, social restriction, dietary restrictions, difficulty in getting jobs, and they considered it to be a significant barrier to getting married. The condition was perceived to be a serious illness. Stigma and suicidal ideation was reported. While there were several misconceptions about the cause of vitiligo, most patients did not think their disease was contagious, heritable or related to leprosy. Multiple medical consultations were frequent. Complete repigmentation was strongly desired, but a lesser degree of repigmentation was acceptable if progression of disease could be arrested. The problems were perceived to be more severe in women. The disease imposed a significant financial burden.

CONCLUSION

Addressing psychosocial factors is an important aspect of the management of vitiligo, particularly in patients from communities where the disease is greatly stigmatizing.

摘要

背景

白癜风在印度患者中具有特殊意义,因为在深色皮肤中,色素脱失现象明显,而且这种疾病在该文化中存在巨大的污名。

目的

本研究旨在确定患者对病因的看法、对疾病的关注方面、对医疗和心理社会需求的认识、对治疗的期望以及对医生的期望,以及疾病对患者生活的影响。

方法

对 50 名白癜风患者进行半结构式访谈。采用目的性抽样选择研究对象。每次访谈均录制在录音磁带上,并对转录本进行分析,以确定重要问题和关注点。

结果

患者对他们的疾病存在各种担忧,如身体外观、白斑向暴露皮肤和全身的扩散、被排斥、社交受限、饮食限制、找工作困难,他们认为这是结婚的一个重大障碍。这种疾病被认为是一种严重的疾病。报道了耻辱感和自杀意念。尽管对白癜风的病因存在多种误解,但大多数患者认为他们的疾病不具有传染性、遗传性或与麻风病有关。频繁进行多次医疗咨询。他们强烈希望完全复色,但如果能阻止疾病的进展,较小程度的复色也是可以接受的。女性患者认为这些问题更加严重。疾病给他们带来了巨大的经济负担。

结论

解决心理社会因素是白癜风管理的一个重要方面,尤其是在疾病污名化严重的社区中。

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