Parenting stress evaluation and behavioral syndromes in a group of pediatric patients with epilepsy
Introduction
Children's chronic diseases and disabilities may cause critical effects on the entire family [1]. These effects depend on a number of characteristics of the child, the parents, and their environment [2]. Being aware of the effects produced by children's disease on their parents is important because it allows one to encourage coping strategies and to offer the support needed to reduce the emotional burden related to the situation. It also helps to promote an improvement in the relationship between parents and children, including those children without medical problems, resulting in a greater ability to combine medical care with work and relationships with friends and with the partner [1], [3]. On the other hand, stress, in general, decreases the ability to withstand adversity and predisposes people to develop mood disorders [4].
Research has already shown a sensible measure of parenting stress [5] in connection with the effects of externalizing and internalizing behavioral problems of healthy children [6]. While behavioral problems occurring in children with epilepsy have been established in the literature [7], [8], parenting stress has been investigated only recently [9], [10].
Moreover, an increased level of stress is detected in parents of autistic children in proportion to the severity of the condition [11], of children with diabetes [12], or of children with asthma [13]. Given that having children with diseases such as those mentioned above can generate parenting stress, we may assume that also having children with epilepsy, characterized by unpredictable crisis onset, can cause stress related to treatment concerns in their parents. Parenting stress is an important theoretical concept since in the literature it has shown its relevance for explaining disorders and resilience of families in influencing the behaviors adapted by parents [5], [9]. Abidin introduces his PSI stating that an early identification of “child–parent” stressing systems and interventions focused at reducing this stress might reduce the frequency and intensity of emotional and behavioral disorders in the children. For this purpose, the PSI measures the stress perceived in the parent–child interaction. Parenting stress is a specific form of stress uniquely perceived by parents that results from the demands of being a parent. It is a multidimensional concept composed of the factors that can produce dysfunctional parental behaviors, which are divided in two major domains: child characteristics and parent characteristics [5]. The short form of the PSI, used in this study, is described in detail in the Measures section.
To our knowledge, only one study has examined parenting stress and behavior of children with drug-resistant epilepsy [10]. Children with epileptic syndromes can have a high incidence of behavioral disorders [14]. Epilepsy is a condition that predisposes children to develop behavioral problems, which increase with seizure recurrence [15] and which create in turn stress in the parents. In addition, clinical variables (time of onset, type of seizure, seizure rates) and personal expectations (feelings and emotions about the current health status and future of the child) also explain the increase of parenting fears while lowering children's quality of life [16], [17]. In adults, instead, the quality of life is influenced more by mood disorders and antiepileptic drug (AED) side effects than by sociodemographic and clinical variables [18], [19].
The main goal of our work was to identify the possible presence of a greater stress in parents of children with epilepsy, determining whether and how parenting stress is linked to behavioral disorders of children with epilepsy. We analyzed the relationships between parenting stress and behavioral disturbances in the sample of children with epilepsy and in the Control Group to verify whether it is possible to find the same relationships or different ones and, in the latter case, in which way they differ.
A secondary aim was to verify if the age of children with epilepsy could favor a reduction in the level of parenting stress, considering that parents of toddlers may be more willing to fulfill their caregiving role [20], for example by being present all the time, by reducing social activities, by taking care of their children's health, and by preventing harmful accidents. On the other hand, parents of children at school age may have an overload of worries concerning challenges that their children have to face, like learning, socializing, gaining autonomy, and developing psychological well-being [21], [22].
Section snippets
Methods
This study was conducted in a pediatric clinic specialized in the treatment of epilepsy. The patients were under the care of a pediatric neurologist. Informed consent was obtained from the parents of all subjects, and the study was approved by the Ethical Committee of the University of Chieti. The parents completed questionnaires before, during, or after the control visit of their children. Two questionnaires were administered, the Parenting Stress Index — Short Form (PSI-SF) [23] and the
Results
Descriptive statistics were calculated for the scores obtained by Group I, Group II, and Control Group. Table 1 shows the means and standard deviations for the different subscale scores in the entire PSI and CBCL. The data are partitioned into three groups: Control Group, Group I, and Group II. For the Control Group and Group I, T scores and percentage of children in the clinical range are reported for each subscale and Total Problems of the CBCL. While only 3% of the subjects in the Control
Discussion
The results of the present study confirm that taking care of a child with epilepsy, even if seizures are well controlled, for a parent leads often to an amount of stress higher than in those parents whose children do not have a chronic illness. This finding is in agreement with the high level of parenting stress found in children with other kinds of pathologies [11], [12], [13], [28]. In addition, these results confirm that children with epilepsy syndromes also tend to exhibit a higher
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2019, Epilepsy and BehaviorCitation Excerpt :An instrument often used and validated in the field is the child behavior checklist (CBCL) [24,25,47–49]. As responses of caregivers may be inaccurate or exaggerated [9–11,14,28,50–53], also due to parenting stress, the validity of parent-proxy measures might be questioned. For this reason, the validity of parents' reports on proxy measures will be taken into consideration.