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一项针对癫痫患儿家长的教育项目(FAMOSES)的效果:一项对照多中心评估研究的结果。

The efficacy of an educational program for parents of children with epilepsy (FAMOSES): Results of a controlled multicenter evaluation study.

作者信息

Hagemann Anne, Pfäfflin Margarete, Nussbeck Fridtjof W, May Theodor W

机构信息

Department of Psychology, Bielefeld University, Germany.

Epilepsy Center Bethel, Bielefeld, Germany.

出版信息

Epilepsy Behav. 2016 Nov;64(Pt A):143-151. doi: 10.1016/j.yebeh.2016.09.027. Epub 2016 Oct 13.

Abstract

OBJECTIVE

The objective of this study was to evaluate the efficacy of the educational program FAMOSES (modular service package epilepsy for families) for parents of children with epilepsy.

METHOD

Parents of children with epilepsy from Germany and Austria were included in a controlled prospective multicenter study using a pre-post design. Participants of the FAMOSES program (FAMOSES group, n=148) completed a standardized questionnaire immediately before the program and six months later. The matched control group of parents not participating in the program (n=74, matching ratio 2:1) also answered the questionnaire twice, at an interval of six months. The questionnaire comprised epilepsy-specific outcome measures (e.g., knowledge, coping, fears) and disease-related variables (e.g., seizure frequency). The generalized estimation equation approach was used for statistical analysis. In addition, parents' satisfaction with the FAMOSES program was assessed six months after participation.

RESULTS

Parents of the FAMOSES group significantly improved in epilepsy-specific knowledge (group×time interaction: p<.001), coping (p<.01), epilepsy-related fears (p<.05), and in speaking about epilepsy with their child (p<.05) compared with the control group. No effects were found on disease-related variables. Nearly all of the participants rated the FAMOSES parents' program as "very good" (71%) or "good" (27%).

CONCLUSION

The efficacy of the FAMOSES parents' program was confirmed. The results indicate that imparting knowledge and the interactive approach help parents in coping with their child's epilepsy and reduce epilepsy-related fears.

摘要

目的

本研究旨在评估针对癫痫患儿家长的教育项目FAMOSES(面向家庭的模块化癫痫服务包)的效果。

方法

来自德国和奥地利的癫痫患儿家长被纳入一项采用前后对照设计的前瞻性多中心对照研究。FAMOSES项目组(FAMOSES组,n = 148)在项目开始前及六个月后分别完成一份标准化问卷。未参与该项目的家长匹配对照组(n = 74,匹配比例2:1)也在六个月的间隔内两次回答问卷。问卷包括癫痫特异性结局指标(如知识、应对方式、恐惧)和疾病相关变量(如癫痫发作频率)。采用广义估计方程法进行统计分析。此外,在参与项目六个月后评估家长对FAMOSES项目的满意度。

结果

与对照组相比,FAMOSES组家长在癫痫特异性知识(组×时间交互作用:p <.001)、应对方式(p <.01)、癫痫相关恐惧(p <.05)以及与孩子谈论癫痫方面(p <.05)均有显著改善。在疾病相关变量方面未发现有影响。几乎所有参与者将FAMOSES家长项目评为“非常好”(71%)或“好”(27%)。

结论

FAMOSES家长项目的效果得到证实。结果表明,传授知识和互动方法有助于家长应对孩子的癫痫问题,并减少与癫痫相关的恐惧。

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