Baybaş Sevim, Yıldırım Zerrin, Ertem Devrimsel Harika, Dirican Ayten, Dirican Ahmet
Bakirkoy Prof. Dr. Mazhar Osman Mental Health and Neurological Diseases Education and Research Hospital, Department of Neurology, Istanbul, Turkey.
Bakirkoy Prof. Dr. Mazhar Osman Mental Health and Neurological Diseases Education and Research Hospital, Department of Neurology, Istanbul, Turkey; Bagcilar Education and Research Hospital, Department of Neurology, Istanbul, Turkey.
Epilepsy Behav. 2017 Feb;67:84-90. doi: 10.1016/j.yebeh.2016.12.023. Epub 2017 Jan 14.
Epilepsy is a chronic disease with an increased risk of stigma. The aim of this study was to investigate the efficacy of a scale developed by the authors to determine the level of stigma in Turkish patients with epilepsy and their relatives.
In this pilot study, two scales were developed, one consisting of 32 questions for the patients and one of 20 questions for the patients' relatives. Initially, a total of 30 patients with epilepsy and 30 relatives of the patients were included. The Cronbach's alpha coefficient was calculated in a reliability analysis of validity applying the scales to 302 patients and 201 relatives of the patients. The Pearson correlation coefficient was used for the reliability analysis of the test-retest. The t-test was used in paired series, and factor analysis was conducted. The correlation between the clinical and demographical data and the stigma scores was evaluated.
The scales were applied to participants twice under the same conditions in one-week interval. In the test-retest analysis, the internal consistency of the scales was high and reliable. In the analysis of the patients, the Cronbach's alpha value of the scale was found to be 0.915. In the factor analysis, the questions were grouped into five factors including social isolation, discrimination, insufficiency, false beliefs, and stigma resistance. The factors with the highest contribution to the stigma level were social isolation and discrimination. In the stigma scores, a significant correlation was found between the age of the patient, frequency of seizures, education status, level of income, and the amount of antiepileptic drugs used. In the analysis of the patients' relatives, the Cronbach's alpha value of the scale was found to be 0.892. In the factor analysis, the questions were classified as discrimination, prejudgments, and false beliefs. The factor which most contributed to the stigma level was discrimination. A significant correlation was found in the stigma scores between sex, education status, marital status, and income distribution.
According to our study results, it is clearly seen that both patients and their relatives suffer from epilepsy-associated stigma. Patients with epilepsy and their relatives are faced with discrimination in society, resulting in social isolation. We, therefore, believe that both patients and their relatives should be informed in detail about discrimination to overcome this challenge.
癫痫是一种耻辱感风险增加的慢性疾病。本研究的目的是调查作者开发的一种量表在确定土耳其癫痫患者及其亲属耻辱感水平方面的有效性。
在这项试点研究中，开发了两个量表，一个由针对患者的32个问题组成，另一个由针对患者亲属的20个问题组成。最初，共纳入30例癫痫患者及其30名亲属。在将量表应用于302例患者及其201名亲属的效度可靠性分析中计算了克朗巴哈系数。重测可靠性分析采用皮尔逊相关系数。配对系列采用t检验，并进行因子分析。评估临床和人口统计学数据与耻辱感得分之间的相关性。
在一周的间隔内，在相同条件下对参与者应用量表两次。在重测分析中，量表的内部一致性高且可靠。在患者分析中，量表的克朗巴哈系数值为0.915。在因子分析中，问题被分为五个因子，包括社会隔离、歧视、不足、错误信念和耻辱感抵抗。对耻辱感水平贡献最大的因子是社会隔离和歧视。在耻辱感得分中，发现患者年龄、癫痫发作频率、教育程度、收入水平和使用的抗癫痫药物数量之间存在显著相关性。在患者亲属分析中，量表的克朗巴哈系数值为0.892。在因子分析中，问题被分类为歧视、预判和错误信念。对耻辱感水平贡献最大的因子是歧视。在耻辱感得分中，发现性别、教育程度、婚姻状况和收入分配之间存在显著相关性。
根据我们的研究结果，很明显患者及其亲属都遭受与癫痫相关的耻辱感。癫痫患者及其亲属在社会中面临歧视，导致社会隔离。因此，我们认为应该让患者及其亲属详细了解歧视，以克服这一挑战。
