Joss Idit, Bachner Yaacov G, Shorer Talia, Shorer Zamir, O'Rourke Norm
Department of Epidemiology, Biostatistics and Community Health Sciences, Ben-Gurion University of the Negev, Be'er Sheva 8410501, Israel.
Center for Multidisciplinary Research in Aging, Ben-Gurion University of the Negev, Be'er Sheva 8410501, Israel.
Healthcare (Basel). 2023 Oct 1;11(19):2662. doi: 10.3390/healthcare11192662.
Caring for a child with epilepsy poses various psychological, physical and medical challenges; these can lead to caregiver burden. The aim of this study was to identify predictors of burden with mothers caring for a child with epilepsy. Our analyses included sociodemographic (e.g., ethnicity), mental health (e.g., symptoms of anxiety, depression) and physiological factors (e.g., extent of pharmacotherapy).
A total of 168 mothers caring for a child with epilepsy were recruited while attending the Pediatric Neurology Clinic at Soroka Medical Center, Be'er Sheva, Israel. This cross-sectional sample included 130 Jewish-Israeli and 38 Arab-Bedouin mothers who completed parallel questionnaire batteries that included the Zarit Burden Interview and other scales translated and validated in Hebrew and Arabic. We computed path analyses to identify both direct and indirect predictors of caregiver burden.
Burden was directly predicted by emotional exhaustion, symptoms of anxiety and (Bedouin) ethnicity. Indirect effects on burden included illness severity (via emotional exhaustion), ethnicity and emotional exhaustion (both via anxiety). That is, both ethnicity and emotional exhaustion directly and indirectly predicted caregiver burden via greater anxiety. Illness severity indirectly predicted symptoms of depression, anxiety and caregiver burden. We found that 55% of epilepsy care burden was predicted by this path model.
Bedouin mothers reported greater illness severity, symptoms of depression, anxiety and caregiver burden. Differences between groups in epilepsy severity suggest that less severe cases in the Bedouin community do not come to clinical attention (e.g., are concealed due to stigma). These findings underscore the need for health promotion strategies and interventions for caregivers tailored to account for ethnic and cultural differences.
照顾癫痫患儿会带来各种心理、身体和医学方面的挑战；这些挑战可能导致照顾者负担。本研究的目的是确定照顾癫痫患儿的母亲负担的预测因素。我们的分析包括社会人口学因素（如种族）、心理健康因素（如焦虑、抑郁症状）和生理因素（如药物治疗程度）。
在以色列贝尔谢巴索罗卡医疗中心的儿科神经科诊所就诊时，共招募了168名照顾癫痫患儿的母亲。这个横断面样本包括130名犹太裔以色列母亲和38名阿拉伯贝都因母亲，她们完成了平行的问卷组，其中包括 Zarit 负担访谈以及其他已翻译成希伯来语和阿拉伯语并经过验证的量表。我们进行了路径分析，以确定照顾者负担的直接和间接预测因素。
情感耗竭、焦虑症状和（贝都因）种族直接预测了负担。对负担的间接影响包括疾病严重程度（通过情感耗竭）、种族和情感耗竭（均通过焦虑）。也就是说，种族和情感耗竭都通过更大的焦虑直接和间接预测照顾者负担。疾病严重程度间接预测了抑郁、焦虑症状和照顾者负担。我们发现，这个路径模型预测了55%的癫痫护理负担。
贝都因母亲报告的疾病严重程度、抑郁、焦虑症状和照顾者负担更高。癫痫严重程度在不同群体之间的差异表明，贝都因社区中不太严重的病例没有得到临床关注（例如，由于耻辱感而被隐瞒）。这些发现强调了针对照顾者的健康促进策略和干预措施的必要性，这些措施应考虑到种族和文化差异。
