Helping parents and children with epilepsy cope successfully: The outcome of a group programme for parents

This paper describes a study to determine the effectiveness of a group programme for parents designed to reduce the psychosocial morbidity among children with epilepsy and their families. The participants were the parents children attending the seizure clinic at a children's hospital. The first part of the project had shown that half of the children and their families had considerable morbidity. Despite the high rate of psychosocial morbidity among these children and thier families, only 35% of the parents expressed an interest in participation in the intervention programme, with only 12% attending any meetings. The latter were mainly the small number of parents whose children had severe intractable epilepsy as well as educational and family problems. Many parents did, however, request more information about epilepsy and for the provision of a counselling service. The latter is likely to be most beneficial in the months following diagnosis.     

Growing up with epilepsy: a two-year investigation of cognitive development in children with new onset epilepsy

Purpose: To characterize patterns and determinants of normal and abnormal cognitive development in children with new onset epilepsy compared to healthy controls. Methods: Longitudinal (2‐year) cognitive growth was examined in 100 children, age 8–18 years, including healthy controls (n = 48) and children with new onset epilepsy (n = 52). Cognitive maturation was examined as a function of the presence/absence of two neurobehavioral comorbitiies (attention deficit hyperactivity disorder and/or academic problems) identified at the time of epilepsy diagnosis. Groups were compared across a comprehensive neuropsychological battery assessing intelligence, academic achievement, language, memory, executive function, and psychomotor speed. Results: Children with new onset epilepsy without neurobehavioral comorbidities were comparable to healthy controls at baseline, rate of cognitive development, and follow‐up assessment across all neuropsychological domains. In contrast, the presence of neurobehavioral comorbidities was associated with significantly worse baseline and prospective cognitive trajectories across all cognitive  domains, especially executive functions. Conclusion: The presence of neurobehavioral comorbidities at the time of epilepsy onset is a major marker of abnormal cognitive development both prior to and after the onset of epilepsy.     

famoses: a modular educational program for children with epilepsy and their parents

BackgroundIt is known that most adult patients with epilepsy often have poor knowledge of their disorder, treatment options, and social and vocational consequences, despite the huge amount of information available. Being pressed for time, health care professionals often are not able to provide the repetitive counseling and instruction necessary to address epilepsy care adequately. Therefore educational programs are considered extremely important in filling the gap.MethodFor German-speaking countries, two educational programs called famoses, modulares Schulungsprogramm Epilepsie fűr Familien [modular service package epilepsy for families], were developed by a multidisciplinary group of neuropediatricians, psychologists, social workers, and educators. The aims of the famoses programs are to improve children’s and parents’ knowledge about epilepsy and to help patients of childhood age and their parents achieve a better understanding of their disease, gain more self-confidence, and reduce specific fears regarding epilepsy. famoses comprises two different educational programs: famoses for kids with epilepsy within the developmental period of ages 7 to 13, and famoses for parents or caretakers. The programs are designed for interactive small-group education.ResultsThe child-centered educational program is based on a fictional story: The children are sailors on a virtual cruise, sailing from island to island, accompanied by educated trainers. On each island there is something new to discover about epilepsy. The parent (and caretaker)-centered educational program covers different topics—overview and content of the program, basic knowledge, diagnostics, therapy, prognosis and development, and living with epilepsy—within six modules. The program was implemented in Germany and Switzerland in the spring of 2005 and is now operating in different epilepsy centers.ConclusionWithin comprehensive therapeutic management of epilepsy, educational programs for patients, and for parents (caretakers) of children with epilepsy, are considered to be extremely important. Such educational programs have two main goals: to increase knowledge about the disorder, and to strengthen the patients’ responsibility for themselves, with the consequence of living with as few limitations as possible. famoses is an effective component of this comprehensive care. The program has been operating successfully in different epilepsy centers in Germany and Switzerland since the spring of 2005.     

Against the odds: growing up with parents who have learning difficulties

For this article we drew on material from a study in which we explored how people who were brought up in a family headed by a parent or parents with learning difficulties managed the transition to adulthood. Using evidence from in-depth interviews, we provided an assessment of how the now-adult children came through what would generally be seen as a risk-filled upbringing. Despite the problems they encountered in their childhood, many of which originated outside the home, most of the informants had maintained a valued relationship with their family and remained close to their mother.     

Parenting stress in parents of children with epilepsy and asthma

The purposes of this study were to identify differences in parenting stress between 2 samples and examine the factors associated with parenting stress. An asthma sample was selected to contrast with the epilepsy sample because both medical conditions are chronic episodic conditions that require daily medication. Data from 49 parents of epileptic children and 54 parents of asthmatic children were examined in this study. Samples were conducted in a hospital pediatric clinic. Parental stress was measured using Abidin's Parenting Stress Index-long form. There were 2 major domains in the Parenting Stress Index: parent domain and child domain. The parent domain included 7 subscales, and the child domain included 6 subscales. Overall, results showed that parental stress was higher in the epilepsy group. Significant differences were found in 7 subscales: adaptability, demanding, hyperactivity/distractibility, role restrictions, depression, relationship to spouse, and parental health. Possible explanations for a higher level of parenting stress in the epilepsy group were discrimination, poor child adaptation, the threat of unpredictability of the seizures, and neurological dysfunction. The causes of higher levels of parenting stress in the asthma group were limitation of activities and parental health condition. These differences should be considered when psychosocial care is offered. Results also showed that demographic variables (gender, age, and family social economic status), age at onset, and condition severity were not effective predictors for parenting stress.     

Measuring stigma in children with epilepsy and their parents: instrument development and testing

PURPOSE: The goal of this work is to describe psychometric properties of two scales measuring perceived stigma in children with epilepsy and their parents. METHODS: Data were collected for the parent scale in two samples: parents of 173 children with epilepsy and of 224 children with new-onset seizures. The child scale was tested in the chronic sample. Content validity, internal consistency reliability, and construct validity were tested. RESULTS: Both scales had strong internal consistency reliability and construct validity. Higher scores were associated with greater seizure severity scores. In the parent scale, lower scores were associated with more positive mood, less worry, and more family leisure activities. In the child scale, higher scores were correlated with more negative attitude, greater worry, poorer self-concept, and more depression symptoms. CONCLUSIONS: Both scales were found to have strong psychometric properties. They are short, and items are easy to understand. These scales have potential for use in research and in the clinical setting to measure stigma.     

Quality of life among parents of children with epilepsy: A preliminary research study

PurposeThe current preliminary study was based on the principles of positive psychology orientation when examining the multidimensional construct of quality of life (QOL): the physical functioning, psychological functioning, functional state, and social functioning among parents of children with epilepsy. We assessed the contribution of loneliness and personal resources, namely optimism and flexibility, to parents' QOL.MethodThe study was conducted at a multidisciplinary center for epilepsy in a central hospital in Israel. Forty-eight parents agreed to participate in a preliminary research study and completed a battery of self-report questionnaires.ResultsSignificant negative correlations were found between flexibility and the scores on the four components of QOL (higher scores on the QOL scales indicated lower QOL). Optimism was not found to be associated with the scores on QOL. High levels of loneliness were found to be associated with higher scores on the four components of parents' QOL. Among sociodemographic variables, only the economic situation (due to illness) was linked negatively to the scores on QOL components. Flexibility and economic situation were the significant variables that accounted for the explained variance of total QOL.ConclusionThe results of this study highlight the importance of flexibility in effectively managing the stressors that might be associated with childhood epilepsy. These results suggest that psychosocial intervention providing coping strategies for the family might improve QOL. Moreover, a parent's economic situation seems to be an essential part of the psychosocial assessment, and assurance of the optimal utilization of financial rights and facilities may improve their QOL.     

Taking charge of epilepsy: the development of a structured psychoeducational group intervention for adolescents with epilepsy and their parents

Children and adolescents with epilepsy frequently experience poor psychosocial outcomes due to numerous factors such as perceived stigma, behavior problems, academic difficulties, and depression. Health psychology research has documented the effectiveness of psychoeducational interventions aimed at improving psychosocial outcomes for individuals with a variety of health conditions. With increasing numbers of adolescents living with epilepsy, interest in improving the quality of life for this particular population has grown. There remains, however, a paucity of research concerning psychosocial interventions for adolescents with epilepsy. The present study outlines the development and initial implementation of a 6-week structured psychoeducational group intervention for adolescents with epilepsy and their parents. Preintervention, the QOLIE-AD-48, Childhood Depression Inventory, and Revised Children's Manifest Anxiety Scale were administered. Educational topics included medical aspects of epilepsy, healthy lifestyle behaviors, family and peer relationships, understanding self-image and self-esteem, and stress management techniques. Participants were introduced to a variety of cognitive-behavioral strategies, and were encouraged to share their own experiences with epilepsy. Feedback from adolescent and parent participants indicated that the intervention was relevant to their needs, helped them better understand their epilepsy, and allowed an opportunity for positive peer support. Also, postintervention outcome measurement indicated an overall positive trend for quality of life improvement in the adolescents.     

Psychosocial and economic problems of parents of children with epilepsy.

The parents of children with epilepsy (PCE) face multiple psychosocial and economic problems that are often neglected. We undertook this study to ascertain these problems among the patients attending a tertiary referral center for epilepsy in India. A structured questionnaire was administrated to parents of 50 children aged between 5-10 years and having epilepsy for more than 1 year's duration. Some 52% of the children had partial epilepsy whilst the remaining had generalized epilepsy. The median seizure frequency was one per 6 months. The majority of the patients (86%) were living in villages. The family income was less than 1000 Rs per month (1 USD = 42 INR) for 66% of the patients. A decline in social activities, after the onset of epilepsy in their children, was reported by 80% of the parents. Daily routines were significantly affected in over 75% of the parents. Parents had been experiencing frustration (52%) and hopelessness (76%), whilst 60% were in financial difficulties. The most important item of expenditure was cost of drugs or cost of travel to hospital for 54% and 36% parents respectively. Impaired emotional status and poor social adaptation were co-related with the severity of epilepsy (frequent seizures/generalized seizures/attention disorder) and low economic status of the parents. These observations need to be borne in mind while organizing rehabilitation programs for epilepsy.     

癫 患儿家长特质应对方式调查分析简

目的调查研究癫痼患儿家长特质应对方式之特点,以了解其心理健康状况,为针对性心理行为干预提供依据。方法共225例癫痼患儿家长接受特质应对方式问卷（TCSQ）评价,从性别、工作压力等方面分析其特质应对方式特点。结果癫痼患儿家长消极应对和积极应对方式在性别、不同工作压力,以及新诊断与既往诊断之间存在差异（均P〈0．05）,男性和既往诊断患儿之家长对疾病的应对方式更积极,而工作压力大和新诊断患儿之家长应对方式消极;不同发作类型癫痫患儿之家长积极应对方式存在差异,以部分性发作型患儿之家长应对方式更积极（P〈0．05）。结论癫痫患儿家长特质应对方式有其特点,存在较多心理健康问题,临床上应针对性地进行心理行为干预,改善患儿家长心理状况。     

Stress and epilepsy: a population-based cohort study of epilepsy in parents who lost a child

OBJECTIVE: The goal of the study described here was to study the risk for epilepsy in parents exposed to severe stress caused by loss of a child. METHODS: The risk of being diagnosed with epilepsy (Danish National Hospital Register) in a cohort of parents who had lost a child under the age of 18 was compared with the risk among parents who had not lost a child. RESULTS: The adjusted relative risk (RR) of epilepsy in parents who had lost a child was 1.50 (95% CI: 1.21-1.86). The RR was modified by time since bereavement and was 2.46 (95% CI: 1.49-4.07) in mothers and 1.92 (95% CI: 1.09-3.36) in fathers within the first 3 years of loss of a child, and 2.10 (95% CI: 1.53-2.88) in mothers and 0.66 (95% CI: 0.41-1.06) in fathers 4 to 18 years after loss. CONCLUSIONS: Stress was associated with a moderately increased risk of being diagnosed with epilepsy.     

Provision of sudden unexpected death in epilepsy (SUDEP) information among Malaysian parents of children with epilepsy

Sudden unexpected death in epilepsy (SUDEP) is an important cause of mortality in epilepsy. To date, there is only one published UK study evaluating information provision of SUDEP among parents of children with epilepsy (CWE), and there are no studies published from Asia. Although SUDEP information provision is recommended among parents of CWE, it is uncertain if these recommendations are applicable to Asian countries due to the different cultural attitude towards epilepsy. Our prospective cohort study consisted of multiethnic parents of children with epilepsy (CWE) seen in a tertiary hospital in Malaysia. Information on SUDEP was delivered to parents using an epilepsy educational software program. Participants completed a set of standardized questionnaire and Depression Anxiety Stress Scales–Short Form (DASS-21) immediately after and retested 3–6 months after the SUDEP information provision. A total of 127 parents (84 mothers) participated in the study. The CWE consisted of 3 ethnic groups (38% Malay, 30% Chinese, 32% Indian) with a mean age of 9.6 years. Majority (70.9%) felt positive after SUDEP information provision, 90.6% wanted SUDEP discussion for themselves with 70.1% wanted SUDEP discussion with their child, and a lower proportion (58.3%) would discuss SUDEP with their child. None of the participants reported increased symptoms of depression, stress or anxiety attributed to SUDEP information provision. Most parents took steps to reduce SUDEP risk, and most parents did not report an impact on their own functioning. However, there was an increase in parental report over time of impact on their child's functioning following SUDEP information (P < 0.05). In conclusion, most Malaysian parents of CWE wanted SUDEP information. Following SUDEP information disclosure, majority did not report negative emotions; however, an increase in parents over time reported an impact on their child. Our findings reiterate that provision of SUDEP information should form part of care of CWE and parents should receive ongoing support as they undergo a period of parenting adjustment when dealing with the information provided.     

Depression,anxiety and quality of life in parents of children with epilepsy

0bjectives – To assess the impact of childhood epilepsy on parental quality of life (QOL) and psychological health, and to investigate possible correlations between parental QOL and background variables as well as parental anxiety and depression. Subjects and methods – Parents having an epileptic child (n = 263) and parents having a healthy child (n = 270) were enrolled. Groups were in balance for background variables. Short‐Form Health Survey (SF‐36) Questionnaire, Zung Depression Scale (ZDS) and Zung Anxiety Scale (ZAS) were applied to all parents. Patients were divided into the first visit group (newly diagnosed epilepsy) and follow‐up visit group. Results – The parents of children with epilepsy had significantly lower QOL scores in SF‐36 for all subscales and higher levels of depression and anxiety by using ZDS and ZAS. The factors correlated with parental QOL were seizure control, visit status, anxiety, depression, employment, cost of epilepsy, status epilepticus, drug side effect and age of parents. Conclusions – Childhood epilepsy has a severe impact on parental QOL and psychological health, and recognition of possible correlations between parental QOL and background variables will be helpful to improve parental QOL.     

Impact of epilepsy on children and parents in Gabon

Children with epilepsy and their parents face many social and psychological difficulties that remain insufficiently studied in sub-Saharan Africa. The aim here was to assess the quality of life of children with epilepsy and their parents.A community-based cross-sectional survey was conducted in two urban areas and four rural areas of Gabon. Children were screened through key informants, medical sources, and a door-to-door survey. They were clinically selected based on their medical history and a clinical exam conducted by the investigating physician. Electroencephalography had not been carried out because of a lack of material and financial resources. The quality of life of children and their parents was assessed by a structured interview of parents using a questionnaire.Of 317 suspected cases on screening, 83 children with epilepsy were identified. Their mean age was 11.9 ± 4.4 years. Twelve percent of the children had neurosensory abnormalities on clinical exam. Sixty-three percent of them attended school; factors associated with schooling were higher score on the sociability subscale, specialized medical advice, and antiepileptic drug treatment. Sociability difficulties, anxiety, cognitive impairment, and behavioral disorders were suspected in 39.8%, 45.8%, 49.4%, and 42.2% of children, respectively. A total of 48.2% of parents expressed a poor quality of life related to their children's illness. A higher score on the cognition subscale, urban residence, specialized medical advice, and a stable income in the household were predictive of poor parental quality of life.Epilepsy influences many aspects of a child's life and the life of the child's parents. Care should incorporate a cognitive assessment of the child and emphasize information for patients and their relatives.     

Facial clefts and congenital heart defects in children of parents with epilepsy: genetic and environmental etiologic factors

Increased prevalence of cleft lip with or without cleft palate (CL(P], isolated cleft palate (CP), and congenital heart defects (CHD) in children of epileptic mothers have been ascribed to early fetal exposure to antiepileptic drugs (AED). However, common genetic factors responsible for both the malformations in question and the epileptic disorder might be of relevance for the increased rate of CL(P), CP, and CHD, rather than the influence of AED. The present review analyzes the literature on genetic and environmental etiologic factors (i.e. AED and epileptic seizures) that have been reported to increase the rate of CL(P), CP, and CHD in children of parents with epilepsy. Our data suggest that genetic factors are of minor importance for the etiology of facial clefts in offspring of epileptic patients. The rate of facial clefts was increased by a factor of 4.7 in children of AED-treated mothers with epilepsy compared with the background population values. Children of fathers with epilepsy and sibs of epileptic patients had no more facial clefts than expected. The rate of CHD in children of mothers and fathers with epilepsy was comparable to population figures. The role of epileptic seizures as a causative factor for CL(P), CP, and CHD is not settled, but seems to be of limited importance. Areas of future research are outlined concerning the teratogenic role of AED and their metabolites, especially on the postnatal intellectual development of the exposed children. Finally, the need for studies on prophylactic measures as well as the necessity of international surveillance systems on new AED teratogenicity are emphasized.     

Epilepsy in offspring of whom both parents have idiopathic generalized epilepsy: biparental inheritance

BACKGROUND: Little is known about offspring of parents who both have idiopathic generalized epilepsy (IGE). This is of importance for understanding the complex genetic architecture of IGE.METHODS: Families in whom both parents had proven IGE were ascertained through a multiplex families database. Clinical information including EEG recordings and detailed pedigrees was obtained. RESULTS: In family I, the mother had juvenile myoclonic epilepsy (JME), and the father had IGE. One daughter had Lennox-Gastaut syndrome, and the other had unclassified epilepsy. In family II, the mother had JME, and the father had IGE. Two of three sons had an identical clinical picture of clinical picture of childhood absence epilepsy (CAE), but with fast polyspike-wave discharges on EEG. CONCLUSIONS: The clinical phenotype of affected offspring suggested that their epilepsy could be due to the combination of a putative "double dose" of genes from both sides of the family. In such families, as epilepsy genes could be inherited from both parents, a high risk of epilepsy in the offspring could be expected.