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癫痫患儿样本中的父母压力。

Parental stress in a sample of children with epilepsy.

机构信息

Child Neuropsychiatry Unit, Department of Basic Medical Sciences, Neuroscience and Sense Organs, University of Bari "Aldo Moro", Bari, Italy.

Child and Adolescent Neuropsychiatry, Medical School, University of Salerno, Salerno, Italy.

出版信息

Acta Neurol Scand. 2019 Aug;140(2):87-92. doi: 10.1111/ane.13106. Epub 2019 May 5.

Abstract

OBJECTIVE

To assess maternal and paternal stress in two groups of children with different types of epilepsy, at the time of diagnosis and after one year of follow-up.

METHODS

We investigated parental stress in a sample of 85 children aged between 2 and 14 years, divided into two groups based on the diagnosis: Group 1 (50 patients) with childhood absence epilepsy or idiopathic focal epilepsy with rolandic discharges and Group 2 (35 patients) with different forms of drug-resistant epilepsy. Parents independently completed the Parental Stress Index-Short Form at Time 0, when they received the diagnosis and patients started therapy, and at Time 1, after 1 year of follow-up.

RESULTS

We found high levels of stress in both mothers and fathers at Time 0, without statistically significant differences between the two groups. At Time 1, stress values were unchanged in Group 1 mothers; conversely, the levels of stress in Group 1 fathers reduced, with average values that all fell within the "normal range." In Group 2, stress levels were reduced both in mothers and in fathers at Time 1, compared to Time 0, but equally fell into the "pathological range," for both parents.

CONCLUSION

In our study, the diagnosis of the epilepsy itself tended to increase parental stress, apparently regardless of the severity of the epilepsy; even after a period of follow-up, when the epilepsy was better controlled, overall parental stress remained high. It might have been related to feelings of parental inadequacy or concerns about issues such as safety or the outcome for the child.

摘要

目的

评估两组不同类型癫痫儿童在诊断时和随访 1 年后的父母压力。

方法

我们对 85 名 2 至 14 岁的儿童进行了父母压力调查,根据诊断将其分为两组:组 1(50 例)为儿童失神癫痫或伴有罗兰多放电的特发性局灶性癫痫;组 2(35 例)为不同形式的耐药性癫痫。父母在诊断时(即患者开始治疗时)和随访 1 年后(Time 1)分别独立完成了父母压力指数简表。

结果

我们发现两组父母在 Time 0 时压力都很大,但两组之间没有统计学上的显著差异。在 Time 1 时,组 1 母亲的压力值没有变化;相反,组 1 父亲的压力值降低了,平均水平都在“正常范围”内。在组 2 中,与 Time 0 相比,母亲和父亲在 Time 1 时的压力值均降低,但都仍处于“病理性范围”。

结论

在我们的研究中,癫痫的诊断本身似乎会增加父母的压力,而与癫痫的严重程度无关;即使在癫痫得到更好控制的随访期间,父母的整体压力仍然很高。这可能与父母的不足感或对孩子安全或预后等问题的担忧有关。

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