Wirrell Elaine C, Wood Laura, Hamiwka Lorie D, Sherman Elisabeth M S
Division of Child and Adolescent Neurology, Department of Neurology, Mayo Clinic, Rochester, MN, USA.
Epilepsy Behav. 2008 Jul;13(1):169-73. doi: 10.1016/j.yebeh.2008.02.011. Epub 2008 Mar 11.
The goal of the work described here was to determine the prevalence and characteristics of maternal stress in families of children with intractable epilepsy.
Mothers of children aged 2-18 with intractable epilepsy were asked to complete the Parenting Stress Index, Scales of Independent Behavior-Revised, and Child Behavior Checklist, and were queried regarding family type, maternal education, and family income. Neurology clinic charts were reviewed for seizure variables including age at onset, number of failed therapies, and seizure frequency. The Parenting Stress Index measures stress in two broad domains [stress related to characteristics of the child (Child Domain) and stress related to characteristics of the parent (Parent Domain)] as well as a Total Stress score.
Fifty-two of 80 (65%) eligible mothers returned completed questionnaires. Sixty-three percent scored in the clinical range for Total Stress, 75% for the Child Domain, but only 29% for the Parent Domain. Mothers scored more adversely on the Isolation, Health, Role Restriction, and Spouse subscales of the Parent Domain, but more favorably on the Attachment subscale. A moderate to high correlation was noted between behavior problems in the child and higher Total Stress scores, but no significant correlations were found between other seizure or demographic variables.
Intractable childhood epilepsy is associated with markedly increased maternal parenting stress. Increased stress is due predominantly to child factors. Mothers would strongly benefit from added support to alleviate the constant caregiving demands.
本文所述工作的目标是确定难治性癫痫患儿家庭中母亲压力的患病率及特征。
邀请2至18岁难治性癫痫患儿的母亲完成《养育压力指数》《修订版独立行为量表》和《儿童行为清单》，并询问其家庭类型、母亲教育程度和家庭收入情况。查阅神经科门诊病历，了解癫痫发作变量，包括发病年龄、治疗失败次数和癫痫发作频率。《养育压力指数》从两个广泛领域测量压力[与孩子特征相关的压力（儿童领域）和与家长特征相关的压力（家长领域）]以及总压力得分。
80名符合条件的母亲中有52名（65%）返回了完整的问卷。63%的母亲总压力得分处于临床范围，儿童领域为75%，但家长领域仅为29%。母亲们在家长领域的隔离、健康、角色限制和配偶子量表上得分更差，但在依恋子量表上得分更好。儿童行为问题与较高的总压力得分之间存在中度到高度的相关性，但在其他癫痫发作或人口统计学变量之间未发现显著相关性。
儿童难治性癫痫与母亲养育压力显著增加有关。压力增加主要归因于孩子因素。母亲们将从额外的支持中大大受益，以减轻持续的照顾需求。
