Department of nursing, Shanghai Children's Hospital, School of medicine, Shanghai Jiao Tong University,No.355 Luding Road, Shanghai, China.
School of Nursing, Shanghai Jiao Tong University, No.227 Chongqing South Road, Shanghai, China.
Seizure. 2023 Mar;106:117-128. doi: 10.1016/j.seizure.2023.02.004. Epub 2023 Feb 8.
Childhood is the prime age for epilepsy onset. Adults in the family of affected children often become caregivers. Providing care for children with epilepsy may affect the caregivers' quality of life. There is a paucity of literature reviewing the experiences of caregivers of children with epilepsy. Therefore, we summarised the best available evidence exploring caregivers' experiences in caring for children with epilepsy.
Published papers in PubMed, CINAHL, Embase, Cochrane Library, Web of Science, Scopus, and PsycINFO databases were identified by two researchers. All search results were imported into EndNote X20. Two reviewers independently extracted the data using Microsoft Excel. The Critical Appraisal Skill Program systematic review checklist was used to evaluate the quality of the included articles. Data of the included studies were extracted by two independent reviewers using a standardised form. These findings were synthesised using a meta-aggregative approach.
A total of 12 studies were included in this meta-synthesis. In total, 260 findings were identified. These findings were aggregated into 13 categories, which were synthesised into four main themes: (i) burden experienced by caregivers, (ii) challenges experienced by caregivers, (iii) lack of social support, and (iv) adaptation to disease conditions.
The synthesised studies present multiple perspectives on the burdens and challenges encountered by caregivers of children with epilepsy. Caregivers require support from a variety of sources, not only from their families but also society at large. Providing care to children with epilepsy is a dynamic experience for caregivers.
儿童期是癫痫发病的主要年龄阶段。受影响儿童的家庭成员中的成年人往往成为照顾者。照顾癫痫患儿可能会影响照顾者的生活质量。目前，关于癫痫患儿照顾者体验的文献综述很少。因此，我们总结了探索癫痫患儿照顾者体验的最佳现有证据。
两名研究人员在 PubMed、CINAHL、Embase、Cochrane 图书馆、Web of Science、Scopus 和 PsycINFO 数据库中确定了已发表的论文。将所有搜索结果导入到 EndNote X20 中。两名审查员使用 Microsoft Excel 独立提取数据。使用批判性评估技能计划系统评价清单评估纳入文章的质量。两名独立审查员使用标准化表格提取纳入研究的数据。使用元聚合方法综合这些发现。
共有 12 项研究纳入本元综合。总共确定了 260 项发现。这些发现被汇总成 13 个类别，进一步综合成四个主要主题：（i）照顾者的负担，（ii）照顾者面临的挑战，（iii）缺乏社会支持，以及（iv）适应疾病状况。
综合研究从多个角度呈现了癫痫患儿照顾者所面临的负担和挑战。照顾者需要来自多种来源的支持，不仅来自他们的家庭，还来自整个社会。为癫痫患儿提供护理是照顾者的一个动态体验。
