Burden in caregivers of adults with epilepsy in Asian families
Burden in caregivers of adults with epilepsy in Asian families
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DOI：
10.1016/j.seizure.2019.07.008
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发表时间：
2019-10-01
影响因子：
3
通讯作者：
Tan, Chong-Tin
中科院分区：
文献类型：
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作者：
Lai, Siew-Tim;Tan, Wan-Yen;Tan, Chong-Tin
目的：关于照顾者负担的文献多集中于儿童和青少年癫痫患者，而对成人的研究较少。由于照顾是一个动态的、复杂的过程，本研究旨在探讨照顾成人癫痫患者时照顾负担的相关因素。这是一项基于调查的横断面研究，参与者回答了关于感知负担（ZBI）、生活质量（IEQoL）、心理困扰（DASS-21）、家庭功能（FAD）和感知社会支持（MSPSS）的问卷。其他措施包括社会人口统计学和护理接受者的临床特征。结果：共有111名护理人员参与，其中女性占72.1%，父母占55%，华人占59.5%，无业人员占51.4%，受过高等教育者占46.0%。大约一半（42.3%）报告轻度至中度负担（平均ZBI评分29.93，标准差16.09）。此外，多元回归分析确定了10个预测因素，即家庭功能、每周照顾时间、每个家庭照顾者人数、对癫痫的态度、家庭支持、照顾者性别、个人收入以及被照顾者的发病年龄、癫痫发作频率和ADL依赖（F(10,85) = 11.37, p < 0.001）。逐步回归强调家庭功能是主要预测因子（beta = 0.299, p < 0.001）。ZBI总分与照顾者报告的DASS-21抑郁（r = 0.549, p < 0.001）、焦虑（r = 0.599, p < 0.001）和压力（r = 0.576, p < 0.001）亚量表呈正相关，与IEQoL呈负相关（r = -0.637, p < 0.001）。结论：本研究表明，除了人口统计学、社会心理和临床特征外，照顾者负担与家庭系统（家庭功能、支持和照顾者数量）高度相关。未来的研究需要了解如何在家庭系统中支持这一小群照顾者。
Purpose: The literature on caregiver burden tends to focus on children and teenagers with epilepsy and less on adults. As caregiving is a dynamic, complex process across the trajectories, this study aims to examine the factors associated with caregiving burden in those caring for adults with epilepsy.Method. This is a cross-sectional, survey-based study in which participants responded to questionnairesregarding perceived burden (ZBI), quality of life (IEQoL), psychological distress (DASS-21), family functioning (FAD) and perceived social support (MSPSS). Additional measures include socio-demographics and clinical characteristics of the care-recipient.Results: A total of 111 caregivers participated, of whom 72.1% were females, 55% parents, 59.5% Chinese, 51.4% unemployed and 46.0% with tertiary education.Approximately half (42.3%) reported mild-to-moderate levels of burden (mean ZBI score 29.93, SD 16.09).Furthermore, multiple regression analysisidentified10 predictors of caregiver burden, namely family functioning, weekly caregiving hours, number of caregivers per family, attitude towards epilepsy, family support, caregivers' gender, personal income and as well as care-recipients' age of onset, seizure frequency and ADL dependency (F(10, 85) = 11.37, p < 0.001). Stepwise regression highlighted family functioning as the main predictor (beta = 0.299, p < 0.001). The total ZBI score was positively correlated with caregivers' reported levels of depression (r = 0.549, p < 0.001), anxiety (r = 0.599, p < 0.001) and stress (r = 0.576, p < 0.001) subscales in DASS-21, and negatively correlated with IEQoL (r = -0.637, p < 0.001).Conclusion: This study shows that caregivers' burden is highly associated with the family system (family functioning, support and number of caregivers), besides demographics, psychosocial and clinical characteristics. Future research is required to learn how to support this sub-group of caregivers within the family system.