Objective

In selected children with drug-resistant epilepsy (DRE), epilepsy surgery is the most effective treatment option, but unfortunately remains highly underutilized. One of the critical obstacles to pursuing surgical therapy is parents/caregivers’ decision against surgery or to delay the surgery until no other treatment option exists. Understanding caregiver decision-making around epilepsy surgery can improve patient/caregiver experience and satisfaction while facilitating appropriate decision-making that optimizes clinical outcomes. The current review systematically explores the existing evidence on caregiver experience and the decision-making process toward epilepsy surgery.

Methods

The study was conducted as per the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines for systematic literature review. Databases (PubMed Ovid, PubMed Medline, Web of Science, CINHAL, PsycInfo) were systematically searched in February 2021 using a defined search strategy and inclusion/exclusion criteria. Total 1304 articles were screened for titles and abstracts, and 54 full-text articles were retrieved for further assessment. We included 14 articles with critical quality assessment using two different tools for qualitative and questionnaire-based studies. A qualitative content analysis was performed to characterize caregiver experience, perception, and decision-making toward favorable or unfavorable opinions of epilepsy surgery.

Results

Four concepts generated from the analysis may act as enablers or barriers to decision-making around epilepsy surgery: 1. Access to knowledge and information, 2. Communication and coordination issues, 3. Caregiver's emotional state, and 4. Socioeconomic effects. Subsequently, we provided a narrative synthesis of practice recommendations and a conceptual framework to adopt multi-pronged interventions to overcome identified diverse barriers to effective caregiver decision-making.

Conclusion

Multiple influences impact how caregivers decide about epilepsy surgery for their children, with no single factor identified as the primary driver for or against surgery. However, limited research has explored these influences. Future studies should focus on quantitatively examining factors to identify significant variables most likely to influence caregiver decision-making, ultimately overcoming barriers that limit utilization of epilepsy surgery as a treatment tool.

中文翻译：

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癫痫手术的父母经验和决策：定性和定量研究的系统评价

客观的

在某些患有耐药性癫痫 (DRE) 的儿童中，癫痫手术是最有效的治疗选择，但遗憾的是仍未得到充分利用。寻求手术治疗的关键障碍之一是父母/照顾者决定反对手术或推迟手术直到没有其他治疗选择存在。了解护理人员围绕癫痫手术的决策可以提高患者/护理人员的体验和满意度，同时促进优化临床结果的适当决策。本综述系统地探讨了有关护理人员经验和癫痫手术决策过程的现有证据。

方法

该研究是根据系统文献综述的系统评价和荟萃分析的首选报告项目 (PRISMA) 指南进行的。2021 年 2 月，使用定义的搜索策略和纳入/排除标准对数据库（PubMed Ovid、PubMed Medline、Web of Science、CINHAL、PsycInfo）进行了系统搜索。共筛选了 1304 篇文章的标题和摘要，检索了 54 篇全文文章进行进一步评估。我们使用两种不同的定性和问卷调查工具纳入了 14 篇具有关键质量评估的文章。进行了定性内容分析，以描述护理人员对癫痫手术的有利或不利意见的经验、感知和决策。

结果

分析产生的四个概念可能会成为癫痫手术决策的促成因素或障碍：1. 获取知识和信息，2. 沟通和协调问题，3. 护理人员的情绪状态，以及 4. 社会经济影响。随后，我们提供了实践建议的叙述性综合和概念框架，以采用多管齐下的干预措施来克服已确定的有效护理人员决策的各种障碍。

结论

多重影响会影响看护者如何决定为他们的孩子进行癫痫手术，没有一个因素被确定为支持或反对手术的主要驱动因素。然而，有限的研究探索了这些影响。未来的研究应侧重于定量检查因素，以确定最有可能影响护理人员决策的重要变量，最终克服限制癫痫手术作为治疗工具使用的障碍。