Hansen Barbara, Szaflarski Magdalena, Bebin E Martina, Szaflarski Jerzy P
University of Alabama at Birmingham Department of Sociology, Birmingham, AL, USA.
University of Alabama at Birmingham Department of Sociology, Birmingham, AL, USA.
Epilepsy Behav. 2018 Aug;85:1-6. doi: 10.1016/j.yebeh.2018.05.028. Epub 2018 Jun 7.
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.
难治性癫痫对患者及其家庭来说可能具有挑战性。患者的残疾率很高，给家庭照顾者带来了巨大的身体和情感负担。此外，照顾者可能会经历附属污名，即他们感知并内化了社会对某种疾病的负面看法，并表现出一种心理反应。附属污名在难治性癫痫患者的照顾者中很少被研究。本研究考察了附属污名与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的照顾者之间可能存在的差异。这种横断面研究方法采用了一份自我管理的调查问卷，提供给确诊为难治性癫痫的家庭成员的照顾者。我们用30项照顾者困难评估指数（CADI）来衡量负担，并用一个六项量表来衡量附属污名，该量表考察照顾者对针对自己和患有癫痫的家庭成员的污名的看法。使用污名量表得分估计了四个嵌套的普通最小二乘回归模型，以预测在调整人口统计学变量后感知到的负担水平。将癫痫患者的年龄分为两类（儿童/成人），以评估患者年龄对污名与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。癫痫患者中52%为男性，年龄在2至82岁之间。每个回归模型都显示出照顾者感知到的负担水平与附属污名之间存在正相关（p < 0.001）。此外，患有癫痫的家庭成员的年龄对这种影响起到了调节作用（p < 0.05），对于照顾成人的照顾者来说，这种关系更强。在一组主要从大麻二酚（CBD）诊所招募的高度特定的难治性癫痫患者中，本研究表明照顾者经历了附属污名，这与更高的负担水平显著相关。此外，本研究确定了一些特定需求，满足这些需求可能会改善照顾者的身心健康。
