Division of Neurology, Department of Medicine, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia.
Division of Neurology, Department of Medicine, Faculty of Medicine, University of Malaya, Kuala Lumpur, Malaysia.
Seizure. 2019 Oct;71:132-139. doi: 10.1016/j.seizure.2019.07.008. Epub 2019 Jul 8.
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.
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.
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 (β = 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).
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.
caregiver burden 的文献往往集中在患有癫痫的儿童和青少年身上，而对成年人的关注较少。由于照顾是一个贯穿整个轨迹的动态、复杂的过程，本研究旨在研究照顾患有癫痫的成年人的照顾者负担的相关因素。
这是一项横断面、基于问卷调查的研究，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。其他措施包括照顾者的社会人口统计学和临床特征。
共有 111 名照顾者参与，其中 72.1%为女性，55%为父母，59.5%为中国人，51.4%失业，46.0%具有高等教育学历。约有一半（42.3%）报告有轻度至中度负担（ZBI 平均得分为 29.93，标准差为 16.09）。此外，多元回归分析确定了 10 个照顾者负担的预测因素，即家庭功能、每周照顾时间、每个家庭的照顾者人数、对癫痫的态度、家庭支持、照顾者的性别、个人收入以及照顾者的发病年龄、发作频率和 ADL 依赖性（F（10, 85）= 11.37，p < 0.001）。逐步回归突出了家庭功能作为主要预测因素（β= 0.299，p < 0.001）。ZBI 总分与照顾者报告的抑郁水平（r = 0.549，p < 0.001）、焦虑（r = 0.599，p < 0.001）和压力（r = 0.576，p < 0.001）DASS-21 子量表呈正相关，与 IEQoL 呈负相关（r=-0.637，p < 0.001）。
本研究表明，照顾者的负担与家庭系统（家庭功能、支持和照顾者人数）高度相关，除此之外还与人口统计学、心理社会和临床特征相关。需要进一步的研究来了解如何在家庭系统中支持这一亚组的照顾者。
