A comparison of coping strategies used by parents of children with disabilities and parents of children without disabilities

The purpose of this study was to determine whether coping strategies differ in parents of children with disabilities and parents of children without disabilities. Participants consisted of 112 parents, including 50 parents of children with disabilities and 62 parents of children without disabilities. It was hypothesized that coping strategies would be different between the two parent groups. It was also hypothesized that parents of children with disabilities would Seek Social Support and utilize Planful Problem Solving more often than parents of children without disabilities. Coping strategies employed were significantly different between the groups. Seeking Social Support was a more commonly used method of coping among parents of children with disabilities, as was Escape Avoidance and Positive Reappraisal.     

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.     

Internet survey of treatments used by parents of children with autism

We developed an Internet survey to identify treatments used by parents of children with autism. The survey listed 111 treatments and was distributed via colleagues and through chapters of the Autism Society of America and Autism Organizations Worldwide. A total of 552 parents submitted usable returns during the 3-month survey period. On average the parents reported using seven different treatments. The number of treatments used varied as a function of the child's age and type/severity of disability within the autism spectrum. Speech therapy was the most commonly reported intervention, followed by visual schedules, sensory integration, and applied behavior analysis. In addition, 52% of parents were currently using at least one medication to treat their child, 27% were implementing special diets, and 43% were using vitamin supplements. Because parents were using a large number of treatments, many of which lack empirical support, future research should focus on understanding the decision-making processes that underlie treatment selection by parents of children with autism.     

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.     

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。     

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.     

Complementary and alternative medicine treatments for children with autism spectrum disorders

Complementary and alternative medical (CAM) treatments are commonly used for children with autism spectrum disorders. This review discusses the evidence supporting the most frequently used treatments, including categories of mind-body medicine, energy medicine, and biologically based, manipulative, and body-based practices, with the latter two treatments the most commonly selected by families. Clinical providers need to understand the evidence for efficacy (or lack thereof) and potential side effects. Some CAM practices have evidence to reject their use, such as secretin, whereas others have emerging evidence to support their use, such as melatonin. Most treatments have not been adequately studied and do not have evidence to support their use.     

Complementary and alternative medicines use among pediatric patients with epilepsy in a multiethnic community

ObjectivePrior studies highlighted that patients on chronic medications who used complementary and alternative medicines (CAMs) did not share this information with their healthcare providers. Furthermore, there might be potential adverse interactions between CAMs and antiepileptic drug (AED) therapy. However, there are no studies that investigate the effect of religion or race on CAM use in a multiethnic community. Therefore, we aimed to investigate CAM usage among pediatric patients with epilepsy (PPE) and identify predictors of CAM usage in our multiethnic setting.MethodsThis was a cross-sectional study where caregivers of recruited at an outpatient epilepsy clinic between September 2013 and July 2014 completed a self-administered survey. Those who declined participation, lacked understanding of English or Mandarin, or missed the clinic appointments were excluded. Those caring for more than one patient participated only once.ResultsOf the 195 surveys collected, 178 were used for analysis. The PPE used an average of 1.50 AEDs (range: 0–4). Forty-nine (27.5%) caregivers reported giving CAMs to their PPE. Commonly used CAMs were multivitamins (44.4%), traditional herbs (42.2%), and acupuncture (17.4%). Multivitamins were mostly given by Christian/Catholic caregivers while Buddhist caregivers mostly gave traditional herbs or acupuncture. The majority of the CAM users were Chinese. Univariate analysis showed that caregivers with secondary school (high school) education were 3.52 times more likely to use CAMs compared to those with primary school (elementary school) education.ConclusionsWhile some caregivers gave CAMs to their PPE, they had various misconceptions and did not discuss the usage with their healthcare providers. We propose that the predictors identified in this study can help to identify potential CAM users. Healthcare providers should routinely probe about the usage of CAMs by PPE, and thereafter, the suitability of CAM use could be evaluated. The caregivers will benefit from open discussion with healthcare professionals on the safe use of AEDs with or without CAMs.     

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.     

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 pediatric epilepsy on sleep patterns and behaviors in children and parents

Purpose: Disrupted sleep patterns in children with epilepsy and their parents are commonly described clinically. A number of studies have shown increased frequency of sleep disorders among pediatric epilepsy patients; however, few have characterized the association between epilepsy and parental sleep quality and household sleeping arrangements. The purpose of this study was to explore the effect of pediatric epilepsy on child sleep, parental sleep and fatigue, and parent‐child sleeping arrangements, including room sharing and cosleeping. Methods: Parents of children 2 to 10 years of age with and without epilepsy completed written questionnaires assessing seizure history, child and parent sleep, and household sleeping arrangements. Children’s Sleep Habits Questionnaire (CSHQ) scores were used to evaluate sleep disturbances for the child. The Pittsburgh Sleep Quality Index (PSQI) and the Iowa Fatigue Scale (IFS) were used to evaluate parental sleep and fatigue, respectively. The Early Childhood Epilepsy Severity Scale (E‐Chess) was used to assess epilepsy severity. Key Findings: One hundred five households with a child with epilepsy and 79 controls participated in this study. Households with a child with epilepsy reported increased rates of both parent–child room sharing (p < 0.001) and cosleeping (p = 0.005) compared to controls. Children with epilepsy were found to have greater sleep disturbance by total CSHQ score (p < 0.001) and the following subscores: parasomnias (p < 0.001), night wakings (p < 0.001), sleep duration (p < 0.001), daytime sleepiness (<0.001), sleep onset delay (p = 0.009), and bedtime resistance (p = 0.023). Parents of children with epilepsy had increased sleep dysfunction (p = 0.005) and were more fatigued (p < 0.001). Severity of epilepsy correlated positively with degree of child sleep dysfunction (0.192, p = 0.049), parental sleep dysfunction (0.273, p = 0.005), and parental fatigue (0.324, p = 0.001). Antiepileptic drug polytherapy was predictive of greater childhood sleep disturbances. Nocturnal seizures were associated with parental sleep problems, whereas room sharing and cosleeping behavior were associated with child sleep problems. Within the epilepsy cohort, 69% of parents felt concerned about night seizures and 44% reported feeling rested rarely or never. Finally, 62% of parents described decreased sleep quality and/or quantity with cosleeping. Significance: Pediatric epilepsy can significantly affect sleep patterns for both the affected child and his or her parents. Parents frequently room share or cosleep with their child, adaptations which may have detrimental effects for many households. Clinicians must not only be attentive to the sleep issues occurring in pediatric patients with epilepsy, but also for the household as a whole. These data provide evidence of a profound clinical need for improved epilepsy therapeutics and the development of nocturnal seizure monitoring technologies.     

Strategies of normalization used by parents of chronically ill school age children

The concept of normalization is examined in relation to chronically ill children. From this conceptual base, the responses of 365 parents in a survey of chronically ill children's use of time out of school, were analyzed to determine the normalization strategies used pertaining to the life of the child and family. This article discusses the appropriateness and importance of normalization, and presents implications for the professional nurse working with families of chronically ill children.     

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.     

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.