Affiliate stigma and caregiver burden in intractable epilepsy
Affiliate stigma and caregiver burden in intractable epilepsy
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DOI：
10.1016/j.yebeh.2018.05.028
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发表时间：
2018-08-01
影响因子：
2.6
通讯作者：
Szaflarski, Jerzy P.
中科院分区：
文献类型：
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作者：
Hansen, Barbara;Szaflarski, Magdalena;Szaflarski, Jerzy P.
顽固性癫痫对患者和他们的家人来说都是具有挑战性的。患者的伤残率很高，给家庭照顾者带来了巨大的身体和情感负担。此外，照顾者可能会经历从属污名，他们感知并内化对一种疾病的负面社会观点，并表现出心理反应。在难治性癫痫患者的照顾者中，很少有人研究从属污名。这项研究调查了附属机构污名和照顾者所经历的负担水平之间的关系，以及这些水平在照顾儿童和成人之间的差异。这项横断面方法使用了一项针对确诊为顽固性癫痫的家庭成员的照顾者的自我管理调查。我们用30个项目的照顾者困难评估指数(CADI)和附属污名用六个项目的量表来衡量负担，调查照顾者对针对自己和患有癫痫的家人的污名的感知。四个嵌套的普通最小二乘回归模型被估计使用污名量表分数来预测人口统计学变量调整后的感知负担水平。癫痫患者的年龄被一分为二(儿童/成人)，以评估患者年龄对耻辱和照顾者负担之间关系的可能调节作用。受访者(N=136)主要是白人(83%)，女性(75%)和已婚(69%)，平均年龄为43岁。癫痫患者52%为男性，年龄在2~82岁之间。每个回归模型都得出了在感知的照顾者负担水平和附属机构污名之间的正相关关系(p<；0.001)。此外，患有癫痫的家庭成员的年龄缓和了这种影响(p<；0.05)，这种关系对于成年人的照顾者来说更强。在主要从大麻二醇(CBD)诊所招募的高度精选的难治性癫痫患者组中，这项研究表明，照顾者经历从属耻辱，这与较高的负担水平显著相关。此外，这项研究确定了特定的需求，当这些需求得到满足时，可能会改善照顾者的身心健康。(C)2018 Elsevier Inc.保留所有权利
Intractable epilepsy can be challenging for patients and for their families. Disability rates in patients are high, causing tremendous physical and emotional burden on family caregivers. Additionally, caregivers may experience affiliate stigma, where they perceive and internalize the negative societal views of a condition and exhibit a psychological response. Affiliate stigma has been rarely studied in caregivers of those with intractable epilepsy. This study examined the relationship between affiliate stigma and the levels of burden experienced by caregivers, as well as how these levels may vary between those caring for children and adults.This cross-sectional approach used a self-administered survey offered to caregivers of family members with confirmed diagnoses of intractable epilepsy. We measured burden with the 30-item Carer's Assessment of Difficulties Index (CADI) and affiliate stigma with a six-item scale examining caregivers' perceptions of stigma directed toward themselves and their family members with epilepsy. Four nested ordinary-least-squares regression models were estimated using stigma scale scores to predict levels of perceived burden adjusting for demographic variables. Age of the patient with epilepsy was dichotomized (pediatric/adult) to assess a possible moderating effect of patient's age on the relationship between stigma and caregiver burden.Respondents (N = 136) were predominantly White (83%), female (75%), and married (69%), with an average age of 43 years. Patients with epilepsy were 52% male with ages ranging from 2 to 82 years. Each of the regression models yielded positive associations (p < 0.001) between perceived levels of caregiver burden and affiliate stigma. Additionally, the age of the family member with epilepsy moderated (p < 0.05) the effect, with the relationship stronger for caregivers of adults.In a highly select group of patients with refractory epilepsy recruited mostly from a cannabidiol (CBD) clinic, this study demonstrated that caregivers experience affiliate stigma, which is significantly associated with higher burden levels. Additionally, this study identified specific needs, which when met, may improve caregivers' physical and mental health. (C) 2018 Elsevier Inc. All rights reserved