The association of stigma with self-management and perceptions of health care among adults with epilepsy
The association of stigma with self-management and perceptions of health care among adults with epilepsy
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DOI：
10.1016/s1525-5050(03)00103-3
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发表时间：
2003-06-01
影响因子：
2.6
通讯作者：
Yeager, K
中科院分区：
文献类型：
--
作者：
DiIorio, C;Shafer, PO;Yeager, K
Objective.本研究的目的是探讨癫痫患者的污名感知，包括其与癫痫自我管理和医疗保健的看法。研究参与者来自两个癫痫中心和一个神经科诊所。同意参加研究的个人被要求每隔3个月完成3次评估。收集了320名成年男性和女性癫痫患者的数据; 314名患者提供了关于耻辱的回答，并纳入本分析。参与者的年龄从19岁到75岁不等（平均= 43）。50%的样本是女性，80%是白色。癫痫发作的平均年龄为22岁，76%的参与者报告在过去一年内癫痫发作。分析表明，男女之间以及不同种族和年龄组之间的耻辱感水平相似。然而，那些没有结婚或与伴侣生活在一起，没有为报酬而工作，收入有限的参与者比已婚参与者，那些为报酬而工作的人和那些收入较高的人报告了更高的耻辱感。报告更高程度的耻辱感的参与者包括那些在50岁之前首次癫痫发作和去年癫痫发作的人。那些癫痫发作干扰活动更多的参与者，那些认为他们的癫痫发作控制得更少的人，以及那些在法律上不能开车的人也报告了更高水平的耻辱感。耻辱感和健康相关变量之间的关联性测试显示，报告较高水平的感知耻辱感的参与者也报告了较低水平的自我效能感来管理癫痫;与治疗和癫痫发作相关的更多负面结果预期;以及较低水平的药物管理，药物依从性和患者满意度。不过，它们也报告了对缉获相关信息的更好管理。在回归分析中，收入，首次癫痫发作的年龄，癫痫发作在过去的一年中，较低的自我效能，癫痫发作的负面结果预期，以及患者满意度较低解释了54%的感知耻辱的方差。研究结果表明，感知的耻辱感对癫痫患者很重要，并且与已知在癫痫管理中很重要的因素有关。了解谁最有可能感到受到侮辱，可以制定预防措施。(C)2003 Elsevier Science（美国）。All rights reserved.
Objective. The purpose of this study was to examine the perception of stigma among adults with epilepsy including its association with epilepsy self-management and perceptions of health care.Methods. Participants for the study were recruited from two epilepsy centers and a neurology clinic. Individuals agreeing to participate in the study were asked to complete three assessments each 3 months apart. Data were collected from 320 adult men and women with epilepsy; 314 provided responses on stigma and were included in this analysis.Results. Participants ranged in age from 19 to 75 years (mean = 43). Fifty percent of the sample was female, and 80% was white. The mean age of seizure onset was 22 years, and 76% of participants reported having had a seizure within the past year. Analysis suggests levels of perceived stigma are similar for men and women and across ethnic and age groups. However, participants who were not married or living with a partner, were not working for pay, and had limited income reported higher levels of stigma than did married participants, those working for pay, and those in higher income brackets. Participants reporting higher levels of stigma included those who had their first seizure before the age of 50 and a seizure in the last year. Participants whose seizures interfered more with activities, who rated their seizures as under less control, and who were not legally able to drive also reported higher levels of stigma. Tests of association between stigma and health-related variables revealed that participants reporting higher levels of perceived stigma also reported lower levels of self-efficacy to manage epilepsy; more negative outcome expectancies related to treatment and seizures; and lower levels of medication management, medication adherence, and patient satisfaction. However, they also reported greater management of information related to seizures. In regression analysis, income, age at first seizure, seizures during the past year, lower self-efficacy, negative outcome expectancies for seizures, and less patient satisfaction explained 54% of the variance in perceived stigma.Conclusions. The results of the study suggest that perceived stigma is significant for people with epilepsy and is associated with factors that are known to be important in the management of epilepsy. Understanding who is at greatest risk for feeling stigmatized could lead to the development of preventive measures. (C) 2003 Elsevier Science (USA). All rights reserved.