多发性硬化患者的社会耻辱感:来自伊朗的一项研究

Q3 Medicine Acta neurologica Taiwanica Pub Date : 2018-03-15
Soroor Kalantari, Mojgan Karbakhsh, Zahra Kamiab, Zahra Kalantari, Mohammad Ali Sahraian
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引用次数: 0

摘要

目的:社会耻辱感是多发性硬化症患者潜在的主要问题,严重影响患者的生活质量。本研究的目的是确定在伊朗人群样本中MS患者感知耻辱的患病率。方法:对2014年转诊至伊朗多发性硬化症协会的305例多发性硬化症患者进行横断面研究。主要变量为病耻感、年龄、性别、婚姻状况、教育程度、职业、病程、症状类型、残疾扩展状态量表、家族史和经济状况。社会污名是通过一份由作者开发的20项问卷来测量的,并在一项试点研究中评估了可靠性。结果:耻辱感的发生频率与职业、病程、症状可见性、残疾程度和经济状况显著相关。年龄、性别、婚姻状况、教育程度、家族史与污名感无显著相关。约44%的患者倾向于向他人隐瞒自己的疾病,52.6%的患者认为这种疾病会让他们在社会上蒙羞。近一半的患者在求职面试中不愿提及自己的疾病。结论:认识到耻辱感对患者生活各方面的影响,有必要找到适当的策略来应对耻辱感及其后果。培训项目可以提高患者应对耻辱的技能。此外,应促进旨在提高公众知识和减少对该疾病的负面态度的项目。
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Perceived Social Stigma in Patients with Multiple Sclerosis: A Study from Iran.

Objectives: Social Stigma is potentially a major problem in multiple sclerosis patients which strongly affects the quality of life. The aim of this study was to determine the prevalence of perceived stigma in patients with MS in a sample of Iranian population.

Methods: This cross-sectional study was performed on 305 MS patients who were referred to Iranian Multiple Sclerosis Society in 2014. The main variables were perceived stigma, age, sex, marital status, educational level, occupation, duration of the disease, type of symptoms, disability expanded status scale, family history and economic status. Social stigma was measured through a 20-item questionnaire which was developed by authors and the reliability was assessed in a pilot study.

Results: The frequency of perceived stigma was significantly associated with occupation, disease duration, and visibility of symptoms, level of disability and the economic condition. There were no significant relationships between perceived stigma and age, sex, marital status, level of education and family history. About 44 percent of patients preferred to hide their disease from others and 52.6 percent believed that this disease would stigmatize them in society. Nearly, half of patients preferred not to mention their disease in job interviews.

Conclusion: Recognition of the impacts of perceived stigma on various aspects of the patients' lives are necessary to find appropriate strategies to deal with stigma and its consequences. Training programs can improve the patients' skills for coping with stigma. Furthermore, programs aimed to upgrade public knowledge and reduce the negative attitudes toward the disease should be promoted.

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来源期刊
Acta neurologica Taiwanica
Acta neurologica Taiwanica Medicine-Neurology (clinical)
CiteScore
1.30
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0.00%
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0
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