Child Neuropsychiatry Unit, Department of Basic Medical Sciences, Neuroscience and Sense Organs, University of Bari "Aldo Moro", Piazza Giulio Cesare 11, Bari, Italy; Child and Adolescent Neuropsychiatry, Medical School, University of Salerno, Via Giovanni Paolo II, 132, Fisciano, SA, Italy.
Child Neuropsychiatry Unit, Department of Basic Medical Sciences, Neuroscience and Sense Organs, University of Bari "Aldo Moro", Piazza Giulio Cesare 11, Bari, Italy.
Epilepsy Behav. 2019 May;94:239-242. doi: 10.1016/j.yebeh.2019.03.029. Epub 2019 Apr 9.
The objective of the study was to explore stress levels in the parents of children with idiopathic epilepsy at different time points of the disease, specifically, at the time of diagnosis, during follow-up, and 1 and 2 years after discontinuation of antiepileptic drugs.
Our study included 50 patients between 5 and 14 years of age, who were diagnosed with childhood absence epilepsy or idiopathic focal epilepsy with Rolandic paroxysms. Parents of the participants independently completed the Parenting Stress Index-Short Form at the time of initial diagnosis, and when the children started antiepileptic drugs (Time 0), and at 1 year (Time 1) and 2 years (Time 2) after discontinuation of therapy.
At Time 0, parental stress levels were increased, both in mothers and fathers, with average scores in the "clinical range" of the parental distress (PD), dysfunctional parent-child interaction (P-CDI), and total stress (TS) scales. At Time 1, the scores on these scales remained high. At Time 2, a mild reduction in the stress scores was observed in both parents, despite values remaining in the "clinical range" for all the scales.
Results suggested that parents of children with epilepsy were not reassured about the child's condition, even after clinical improvement. Parental stress levels remained higher than expected, even 2 years after the discontinuation of therapy and freedom from seizures. This was probably due to concerns with the reappearance of new seizures or a more severe type of epilepsy with the discontinuation of drug(s), and feelings of inadequacy with their parental role(s).
本研究旨在探讨特发性癫痫患儿父母在疾病不同时间点（即诊断时、随访时以及停药后 1 年和 2 年）的压力水平。
本研究纳入了 50 名年龄在 5 至 14 岁之间的患儿，其诊断为儿童失神癫痫或伴有 Rolandic 发作的特发性局灶性癫痫。患儿的父母独立地在初始诊断时（Time 0）、开始抗癫痫药物治疗时（Time 0）以及停药后 1 年（Time 1）和 2 年（Time 2）时使用父母压力指数-短式量表（Parenting Stress Index-Short Form）进行评估。
在 Time 0，父母双方的亲职压力水平均升高，在父母困扰（PD）、亲子互动障碍（P-CDI）和总压力（TS）量表中均出现平均分数处于“临床范围”的情况。在 Time 1，这些量表的分数仍然很高。在 Time 2，尽管所有量表的分数仍处于“临床范围”，但父母双方的压力分数均有所下降。
结果表明，即使在病情改善后，癫痫患儿的父母仍然对孩子的状况感到不安。即使在停药和无癫痫发作 2 年后，父母的压力水平仍高于预期。这可能是由于担心新的癫痫发作或停药后出现更严重类型的癫痫，以及对其父母角色的不适应感。
