"I don't like talking about it because that's not who I am": Challenges children face during epilepsy-related family communication.

OBJECTIVES: Childhood epilepsy not only significantly impacts a child's social relationships and psychosocial wellbeing, but it can also cause disruptions in family relations. Children living with epilepsy often rely on parental figures for guidance in relation to their condition. A paucity of research has examined the challenges for children when communicating about epilepsy with parental figures. This qualitative study explored the challenges faced by children when talking about epilepsy with their parent(s). METHODS: Semi-structured interviews were conducted with 29 children (aged 6-16 years) living with epilepsy. Participants were recruited from a neurology department of a major pediatric hospital and from a national epilepsy association. Interviews were transcribed verbatim and thematically analyzed. RESULTS: Findings revealed four themes: communication impeding normalcy, parental overprotection, parental reactions to epilepsy-related communication, and restriction of activities as a consequence of epilepsy-related communication. DISCUSSION: The study highlights the need for a greater understanding of parent-child dialogue surrounding epilepsy and where challenges lie for children in conversing about their condition. Parents and health care professionals play a pivotal role in facilitating an environment where children feel comfortable talking about epilepsy. This information will be instrumental in the development of a communication-based intervention for families living with epilepsy.

Family communication in the context of pediatric epilepsy: A systematic review.

In childhood chronic illness, family communication can impact the child's and parents' psychosocial well-being. However, little is known about family communication in the context of epilepsy in childhood. The aim of this systematic review was to identify the existing evidence available on communication strategies adopted by families living with childhood epilepsy, including; the facilitators, barriers and challenges experienced by families when choosing to communicate, or not, about epilepsy; and the consequences of this communication. Papers published in the English language prior to March 2015 were identified following a search of six electronic databases: PubMed, MEDLINE, Web of Science, PsycINFO, CINAHL, and Scopus. Studies were included if they involved a sample of parents of children with epilepsy or children/young people with epilepsy (0-18years of age) and used qualitative, quantitative, or mixed methods. Following a comprehensive search and screening process, 26 studies were identified as eligible for inclusion in the review. No studies identified specific communication strategies adopted by families living with childhood epilepsy. Some studies found that talking about epilepsy with family members had positive consequences (e.g., communication as an effective coping strategy), with no negative consequences reported in any of the studies. The main barrier to communication for parents was an unwillingness to use the word "epilepsy" because of the perceived negative social connotations associated with the health condition. For children with epilepsy, barriers were as follows: parental desire to keep epilepsy a secret, parents' tendency to deny that the child had epilepsy, parental overprotection, and parents' tendency to impose greater restrictions on the child with epilepsy than on siblings without epilepsy. Future research investigating the communication strategies of families living with epilepsy is needed in order to create effective communication-based interventions for discussing epilepsy within the home.

To tell or not to tell: A systematic review of the disclosure practices of children living with epilepsy and their parents.

Disclosing an epilepsy diagnosis to others is complex due to the condition's largely invisible nature and associated stigma. Despite this, little has been documented in terms of what this process involves for children living with epilepsy (CWE) and their parents. A systematic review was conducted to examine and synthesize evidence pertaining to: (i) the disclosure practices of CWE and their parents, (ii) enablers and barriers for disclosure, (iii) the impact of disclosure practices, and (iv) the relationship between disclosure management and other variables. The electronic databases PsycINFO, PubMed, MEDLINE, CINAHL, Scopus, and Web of Science were searched systematically. Any empirical, peer-reviewed journal articles with findings reported regarding the self- or proxy-reported disclosure practices of children aged 0-18years with any type of epilepsy and/or their parents were deemed eligible for inclusion. Two review authors completed all stages of screening, data extraction, and quality assessment independently with two additional review authors resolving any discrepancies. A total of 32 articles were included in the review. Only one dated study examined disclosure as a primary focus; in the remaining studies, disclosure was a subfocus of larger studies or pertinent qualitative themes/subthemes incidentally emerged. The limited evidence suggests that: 1) CWE and parents adopt varying disclosure management strategies - from concealment to voluntary disclosure; 2) disclosure decisions are challenging for CWE and parents; 3) many barriers to disclosure exist (e.g., fear of stigmatization and rejection); 4) only a limited number of factors that enable disclosure are known (e.g., openness by others to engage with and learn about epilepsy); 5) disclosure management is significantly related to a number of variables (e.g., child/maternal perceived stigma and seizure control); and 6) there are varying outcomes for CWE and/or their parents in accordance with the adoption of specific disclosure management strategies (e.g., disclosure resulting in greater acceptance and the receipt of support or evoking anxiety/fear in others; and concealment resulting in misunderstandings, embarrassment, and stigma-coaching), but the evidence remains inconclusive in terms of which disclosure management strategy is optimal. While some preliminary work has been conducted, disclosure of epilepsy is a topic that has been largely neglected to date. This is despite the fact that disclosure is a significant source of concern for CWE and parent populations. Future studies should focus on elucidating the unique contextual factors that inform disclosure decisions in order to develop a theoretical framework that can explain the epilepsy disclosure decision-making process.

Children's emotional adaptation to parental BMT.

Few studies have examined the effect of parental BMT on the family and less is known regarding the impact on children. The purpose of this prospective study was to increase understanding of children's adaptation to the stress of parental BMT across a 12-month trajectory. Data were obtained from 61 children ages 10-18 before parental transplant, during parental hospitalization, 1, 4 , 8 and 12 months post BMT. Mixed linear modeling was used to analyze longitudinal data from children nested within families. Analyses examined change in child emotional adaptation, points of greatest vulnerability throughout the BMT trajectory and the impact of theoretically relevant variables on their adaptation. Children's emotional adaptation became significantly more positive over time, although their level of distress remained above the norm. Pre-transplant was the period of greatest emotional distress. Negative self-esteem, disruption within the family structure, use of disengagement coping and the mother as transplant recipient were associated with more negative adaptation. Further research is needed to fully understand the effects of parental BMT on children. However, these findings point to the importance of considering the adaptation of children and its implications for the development of preventive family interventions for this vulnerable population.

Behavior problems in children at time of first recognized seizure and changes over the following 3 years.

OBJECTIVES: The purposes of this 36-month study of children with first recognized seizures were: (1) to describe baseline differences in behavior problems between children with and without prior unrecognized seizures; (2) to identify differences over time in behavior problems between children with seizures and their healthy siblings; (3) to identify the proportions of children with seizures and healthy siblings who were consistently at risk for behavior problems for 36 months; and (4) to identify risk factors for behavior problems 36 months following the first recognized seizure. Risk factors explored included demographic (child age and gender, caregiver education), neuropsychological (IQ, processing speed), seizure (epileptic syndrome, use of antiepileptic drug, seizure recurrence), and family (family mastery, satisfaction with family relationships, parent response) variables. METHODS: Participants were 300 children aged 6 through 14 years with a first recognized seizure and 196 healthy siblings. Data were collected from medical records, structured interviews, self-report questionnaires, and neuropsychological testing. Behavior problems were measured using the Child Behavior Checklist and the Teacher's Report Form. Data analyses included descriptive statistics and linear mixed models. RESULTS: Children with prior unrecognized seizures were at higher risk for behavior problems at baseline. As a group, children with seizures showed a steady reduction in behavior problems over time. Children with seizures were found to have significantly more behavior problems than their siblings over time, and significantly more children with seizures (11.3%) than siblings (4.6%) had consistent behavior problems over time. Key risk factors for child behavior problems based on both caregivers and teachers were: less caregiver education, slower initial processing speed, slowing of processing speed over the first 36 months, and a number of family variables including lower levels of family mastery or child satisfaction with family relationships, lower parent support of the child's autonomy, and lower parent confidence in their ability to discipline their child. CONCLUSIONS: Children with new-onset seizures who are otherwise developing normally have higher rates of behavior problems than their healthy siblings; however, behavior problems are not consistently in the at-risk range in most children during the first 3 years after seizure onset. When children show behavior problems, family variables that might be targeted include family mastery, parent support of child autonomy, and parents' confidence in their ability to handle their children's behavior.

Academic problems in children with seizures: relationships with neuropsychological functioning and family variables during the 3 years after onset.

OBJECTIVES: Children with long-standing epilepsy have a significantly increased risk of academic underachievement compared with healthy controls. We prospectively followed children from seizure onset to assess the relationship between change in neuropsychological functioning and change in academic achievement and to explore the risk and protective moderating effects of demographic, seizure, and family variables. METHODS: As part of a larger study, neuropsychological and academic data were collected at both baseline and 36 months for 219 children 6-14 years of age with seizures. Prior factor analysis of results from a battery of well-standardized neuropsychological tests yielded four factors: language, processing speed, attention/executive/construction, and verbal memory/learning. Academic achievement was measured with the Woodcock-Johnson Revised Achievement Test Battery. Correlation coefficients and linear mixed models were used for analysis. RESULTS: The reading and math scores of children with seizures and siblings did not differ at baseline, but children with seizures had lower scores than siblings at 36 months. Writing scores were significantly lower for affected children than siblings at both times. Among children with seizures, there were positive correlations between neuropsychological functioning and academic achievement at baseline and 36 months. Changes in language and in verbal memory/learning were positively correlated with change in reading achievement (r = 0.25 and r = 0.17, respectively). Age at onset moderated the association between change in neuropsychological functioning and change in reading and writing achievement (P ≤ 0.006), with stronger relationships among younger children (ß = 0.25-0.44). The association between change in language and change in writing achievement was moderated by caregiver anxiety (P = 0.04; stronger for more anxious parents, ß = 0.40), and the association between change in processing speed and change in math achievement was moderated by etiology (P = 0.02; stronger for symptomatic/cryptogenic vs idiopathic, ß = 0.29). Gender and other family variables did not have significant moderating effects. CONCLUSIONS: Changes in neuropsychological function were associated with changes in academic achievement following onset of seizures, with risk factors being younger age at onset, lower caregiver education, high parental anxiety, and symptomatic/cryptogenic etiology. Academic performance should be closely monitored in children with early-onset seizures.

Neuropsychological status at seizure onset in children: risk factors for early cognitive deficits.

OBJECTIVE: This large, prospective, community-based study characterized neuropsychological functioning and academic achievement at the time of the first recognized seizure and identified risk factors for cognitive deficits. METHODS: We compared 282 children (ages 6-14 years, IQ > or =70) with a first recognized seizure to 147 healthy siblings on a battery of well-standardized and widely used neuropsychological and academic achievement tests and examined relationships with demographic and clinical variables. RESULTS: In this intellectually normal cohort, 27% with just one seizure and up to 40% of those with risk factors exhibited neuropsychological deficits at or near onset. Risk factors associated with neuropsychological deficits included multiple seizures (i.e., second unprovoked seizure; odds ratio [OR] = 1.96), use of antiepileptic drugs (OR = 2.27), symptomatic/cryptogenic etiology (OR = 2.15), and epileptiform activity on the initial EEG (OR = 1.90); a child with all 4 risks is 3.00 times more likely than healthy siblings to experience neuropsychological deficits by the first clinic visit. Absence epilepsy carried increased odds for neuropsychological impairment (OR = 2.00). CONCLUSIONS: A subgroup of intellectually normal children with seizures showed neuropsychological deficits at onset. Academic achievement was unaffected, suggesting that there is a window early in the disorder for intervention to ameliorate the impact on school performance. Therefore, the risk factors identified here (especially if multiple risks are present) warrant swift referral for neuropsychological evaluation early in the course of the condition.

The impact of early pregnancy loss on adolescents.

PURPOSE: The purpose of this study was to determine the impact of early pregnancy loss on adolescents' self-esteem, symptoms of depression, family relationships, grief responses, and perception of life changes. STUDY DESIGN: A cross-sectional, comparison design was used to examine responses of 164 never-married, sexually active, low socio-economic females ages 13 to 19 years. Adolescents were placed in four groups based on pregnancy status: (1) Never Pregnant, (2) Pregnant, (3) Early Pregnancy Loss, and (4) Early Pregnancy Loss and Subsequent Pregnancy. METHODS: Reliable and valid instruments measuring self-esteem, symptoms of depression, family relationships, grief responses, and perception of life changes were used. ANOVA, chi square, t tests, and posthoc tests were used in data analyses. RESULTS: The Early Pregnancy Loss group (group 3) had significantly higher scores than all other groups on overall grief responses, grief subscales, and depressive symptoms. Groups 3 and 4 had higher physical, emotional, social, and cognitive grief scores versus Groups 1 and 2. CLINICAL IMPLICATIONS: Adolescents who experience early pregnancy loss may have significant physical, emotional, social, and cognitive grief responses and may be at risk for depressive symptoms. Nurses should assess adolescents' responses to early pregnancy loss and provide sensitive nursing care. Discharge planning should include verbal and written information on the bereavement process and grief responses, anticipatory guidance, when and how to access health care, and referral as appropriate.

Camp experiences and attitudes toward epilepsy: a pilot study.

Most healthcare providers report anecdotally that a camping experience helps children and adolescents with chronic health conditions to develop more positive attitudes toward their condition. However, children's and adolescents' perceptions have rarely been studied systematically. This pilot study of 20 campers with epilepsy who were 8-16 years of age was undertaken to examine the effect of a camp experience on their attitudes toward epilepsy. Attitudes, measured by the 13-item Child Attitude Toward Illness Scale (CATIS), were assessed before and after the camp experience. No pretest or posttest difference in attitude toward epilepsy was found in the total group. However, when attitudes were examined by seizure frequency, there was a trend for those with more frequent seizures to report a more positive attitude after the camp experience. Issues in evaluating camp experiences for youth with chronic conditions are reviewed, and recommendations are made for a comprehensive camp evaluation. Nurses are encouraged to assist families whose child is challenged by more frequent seizures to consider a camp experience.

Stressors, coping and depression in haemodialysis patients.

BACKGROUND: Depression is common in persons receiving outpatient haemodialysis, but little work has been done to explore the variables associated with depression. AIMS: The primary purposes of this study were to (i) examine relationships among stressors, coping and depression and (ii) test the mediating role of coping. DESIGN/METHODS: Data were collected at two points in time, three months apart in 1995/1996. The final convenience sample at Time 2 was 86 participants from two United States midwestern, inner-city dialysis units. Structured interviews were conducted using the Centre for Epidemiologic Studies Depression Scale, the haemodialysis stressor scale (HSS) and the coping strategy indicator. RESULTS: At Time 1 more psychosocial stressors were associated with greater use of problem-solving, social-support and avoidance coping. Both avoidance coping and more psychosocial stressors at Time 1 were related to depression at Time 2. Finally, avoidance coping was found to explain much of the relationship between psychosocial stressors and depression. CONCLUSIONS: Research is now needed that explicates the causal relationships among stress, coping and depression in haemodialysis patients.

Behavior problems in children before first recognized seizures.

OBJECTIVE: It is not known when behavior problems begin in children with epilepsy. The purposes of this study were to: 1) describe the rates of behavior problems in children before their first recognized seizure, 2) determine the differences in behavior problems between children with a first recognized seizure and their healthy siblings, and 3) identify the seizure variables early in the course of the condition that are associated with behavior problems before the first recognized seizure. METHODS: The sample was 224 children (4-14 years old) with a first recognized seizure and their 135 healthy siblings. As part of a larger study, computer-assisted structured telephone interviews were conducted with mothers to measure child and sibling behavior problems. Behavior problems were measured using the Child Behavior Checklist. Frequencies, t tests, correlational analysis, and multiple regression were used to analyze data. RESULTS: Higher than expected rates of behavior problems in the 6 months before the first recognized seizure were found in the total seizure sample, with 32.1% being in the clinical or at-risk range. Rates were highest in children who had previous events that were probably seizures, with 39.5% in the clinical or at-risk range. Children with seizures had significantly higher Total, Internalizing, Attention, Thought, and Somatic Complaints problem scores than their nearest-in-age healthy siblings. Within the seizure sample, variables significantly associated with behavior problems after adjusting for research site, child sex, child age, and socioeconomic status (as represented by primary caregiver's education) were interactions of previously unrecognized seizures with gender and epilepsy syndrome/type of seizures. CONCLUSIONS: Children with previously unrecognized seizures are already at increased risk for behavior problems at the time of their first recognized seizure. These findings are consistent with the hypothesis that in some children, epilepsy is a pervasive condition that includes both seizures and behavioral problems.

Behavioral aspects of epilepsy in children with mental retardation.

Epilepsy and mental retardation, two relatively common childhood conditions, are both associated with a wide range of behavioral disorders. This article reviews the behavioral disturbances found in children with epilepsy, mental retardation, and both conditions. The behavioral disturbances found in children with epilepsy are associated with seizure-related, cognitive, developmental, and psychosocial factors. Although children with mental retardation also demonstrate a broad spectrum of behavioral disturbances, children with specific mental retardation syndromes have better-defined patterns of psychopathology. The presence of epilepsy and mental retardation seems to increase the severity of psychopathology. Further studies are needed, however, to define better the interaction of these two conditions and how they impact the behavior of children.

Children with epilepsy: quality of life and psychosocial needs.

In this chapter, research related to quality of life in children with epilepsy and their psychosocial needs is reviewed. Nursing and nonnursing research reports and descriptions of instruments developed between January 1994 and February 1999 are included. Most research reports described quality-of-life problems, especially psychological functioning in school-age children. Less attention was devoted to psychosocial needs. Major gaps included intervention studies and research on infants and young children. Conclusions include recommendations for future research.

Brief report: Adolescents' attitudes toward epilepsy: further validation of the Child Attitude Toward Illness Scale (CATIS).

OBJECTIVE: To examine adolescents' attitudes toward having epilepsy using the Child Attitude Toward Illness Scale (CATIS) and to provide further psychometric validation of the scale in this population. METHODS: Participants were 197 adolescents aged 11 to 17 years who completed the CATIS at two points and two external validation scales. Test-retest and internal consistency reliability and construct validity were computed. Analysis of variance was used to examine differences in attitudes according to gender, age, and epilepsy severity. RESULTS: Girls, older adolescents, and those with more severe epilepsy had more negative attitudes toward having epilepsy than boys, younger adolescents, and those with moderate or mild epilepsy, respectively. Psychometric analyses yielded excellent internal consistency reliability and good test-retest reliability. The CATIS was moderately correlated with self-esteem and mastery, supporting its construct validity. CONCLUSIONS: The CATIS is a useful and psychometrically sound tool to assess adolescents' attitudes toward having chronic illness.

Childhood epilepsy and asthma: changes in behavior problems related to gender and change in condition severity.

PURPOSE: We conducted a 4-year follow-up study of behavior problems in children with either epilepsy (n = 115) or asthma (n = 105) to identify changes in behavior problems as they were related to gender and change in condition severity. All children were between ages 8 and 13 years and had been diagnosed with their respective conditions for >/=1 year at entry into the study. METHODS: Behavior problems were measured by using the mother's rating on the Child Behavior Checklist. Baseline and follow-up behavior problem scores were examined to see if significant changes occurred over the observation period of the study. To explore change in behavior based on condition severity, each child was placed into "low" and "high" condition severity groups at each time, resulting in four groups: low/low, low/high, high/low, or high/high. There were too few cases in the low/high group to be included in some analyses. Data were analyzed by using analysis of covariance with adjustment for baseline behaviors, age, and age of onset. RESULTS: Within both samples, there was a significant improvement over time for the Total Behavior Problems and Internalizing Problems scores (p

Factors associated with self-concept in children with asthma.

PURPOSE: To investigate the relationship of demographic asthma, family, and child factors with self-concept in children with asthma. METHODS: Data were collected twice approximately 4 years apart from both the affected children and their mothers (N = 134) via interviews and self-report questionnaire. FINDINGS: Children who demonstrated more negative attitudes toward their illness, had less satisfaction with family relationships, and used more negative coping behaviors had the poorest self-concepts. Over time, the greatest improvement in self-concept occurred in children whose attitudes and satisfaction with family relationships improved and whose use of negative coping behaviors decreased. CONCLUSIONS: Results suggest that some children with asthma, especially girls with severe asthma, appear to be at risk for poor self-concept.

Symptoms of depression in adolescents with epilepsy.

OBJECTIVE: To identify factors related to symptoms of depression in a sample of adolescents with epilepsy. METHOD: Cross-sectional data were collected on 115 adolescents aged 12 to 16 years who had epilepsy. Demographic (age, gender), seizure (severity, age of onset), family (stress, resources, relationships), mother (perceptions of stigma, depression), and child (attitude toward epilepsy, satisfaction with family relationships, coping, perceptions of control) variables were assessed by questionnaire and standardized scales. Depression was measured by the Children's Depression Inventory and the Anxiety/Depression subscale of the Youth Self-Report. Data were analyzed by using multiple regression with depression as the dependent variable. RESULTS: In this sample, 23% of subjects had symptoms of depression. Significant predictors of depression as measured by the Children's Depression Inventory (R2 = 0.53) were youth's attitude toward epilepsy, youth satisfaction with family relationships, and unknown locus of control or external locus of control for socially powerful others. CONCLUSIONS: Adolescents' attitudes, attributions, and satisfaction with family relationships are related to depression and should be assessed in the clinical setting. The relationship between locus of control and depression fits the learned helplessness model of depression and suggests the need for interventions to promote an internal locus of control in adolescents with epilepsy.

Quality of life in black hemodialysis patients.

The objectives of this study were to describe quality of life in a sample of black in-center hemodialysis patients, to identify relationships between quality of life (QOL) and selected demographic and illness variables, and to identify changes in quality of life over time. Data were collected at two points in time, 3 months apart. The data were obtained from 79 patients in two inner-city dialysis units and included persons new to dialysis. Structured interviews were conducted using the Quality of Life Index. On the average, these patients were satisfied with their QOL, although there was a large range of scores. Psychological/spiritual QOL (M = 4.27) was higher than health and functioning quality of life (M = 3.77) at both time periods. Younger age (M = 4.07) and more education (M = 4.00) were associated with poorer psychological/spiritual QOL at Time 1, whereas lower hematocrits (M = 3.55) and being new to dialysis (M = 3.41) were associated with poorer health and functioning QOL. The QOL of these black hemodialysis patients was fairly high and similar to the QOL previously reported for whites, suggesting that interventions to improve QOL in hemodialysis patients do not need to be tailored by race. In addition, findings suggest that nursing support may be the most needed during the early stages of dialysis.

Behavioral issues in pediatric epilepsy.

Children with epilepsy have more behavioral and cognitive problems than children with other chronic illnesses and children in the general population. Risk factors are multiple, probably involving a combination of neurological, seizure, family, and child variables. Problems with attention and symptoms of depression occur frequently but may be unrecognized. Anxiety disorders and psychoses are less common. There are very few studies defining most effective therapies for behavioral problems in children with epilepsy. Education, group psychotherapy, and psychopharmacology have been used with success.