Social stigma for adults and children with epilepsy

Summary   For many people with epilepsy, the continuing social reality of their condition is as a stigma. Epilepsy stigma has three different levels; internalized, interpersonal, and institutional. While there have been documented improvements in public attitudes towards epilepsy, the remnants of "old" ideas about epilepsy continue to inform popular concepts resulting in a difficult social environment for those affected. The social and quality of life problems arising from a diagnosis of epilepsy can represent greater challenges than are warranted by its clinical severity. The relationship between stigma and impaired quality of life is well documented. Tackling the problem of stigma effectively requires that all three of different levels at which it operates are systematically addressed.     

Depression in children and adolescents with epilepsy

Depression in children and adolescents with epilepsy is a common but often unrecognized disorder. Both epilepsy and depression are characterized by a chronic course and poor long-term psychosocial outcome. The risk of suicide is even greater in depressed youth with epilepsy than in the general youth population. Educating parents about mood disorders may allow them to be more receptive to psychiatric treatment for their child or themselves. Epidemiological and clinical data on depression in children/adolescents with epilepsy are presented. Seizure-related and general risk factors for the development of depression in youth with epilepsy are reviewed. General guidelines for diagnosis and treatment of depression in children and adolescents are discussed. The early identification and treatment of childhood-onset depression is an important clinical task for all pediatric specialists. Safe and effective multimodal treatment approaches are available.     

Seizure-related injuries in children and adolescents with epilepsy

BackgroundChildren with epilepsy are reported to be at a greater risk of injuries compared with their peers who do not have epilepsy.ObjectivesWe set out to determine the frequency and pattern of seizure-related injuries in children with epilepsy seen at the University College Hospital (UCH), Ibadan, Nigeria.MethodsConsecutive cases of epilepsy seen at the pediatric neurology clinic of the UCH, Ibadan over a period of 6 months were evaluated for injuries in the preceding 12 months using a structured questionnaire. These were compared with age- and sex-matched controls.ResultsA total of 125 children with epilepsy and 125 age- and sex-matched controls were studied. Injuries occurred more frequently in children with epilepsy than in their peers (p = 0.01, OR 1.935, 95% CI 1.142–3.280). Epilepsy was generalized in 80 (64.0%), and localization-related in 45 (36.0%). Idiopathic epilepsy accounted for 74 (59.2%), and the remaining 51 (40.8%) had remote symptomatic epilepsy. Fifty-seven (45.6%) children had suffered seizure-related injuries with multiple injuries in 31 (24.8%). The most frequent were skin/soft tissue lacerations (26.4%), injuries to the tongue and soft tissues of the mouth (19.2%), minor head injuries (15.2%), and dental injuries with tooth loss (8.0%). There was a statistically significant association between seizure frequency and seizure-related injuries (p = 0.002). Children on polytherapy had a significantly higher frequency of seizure-related injuries (p < 0.001).ConclusionEpilepsy is a major risk factor for injuries in childhood. High seizure frequency increases the risk of multiple injuries in children with epilepsy.     

Behavioral comorbidity in children and adolescents with epilepsy

This cross sectional study assessed the prevalence of behavioral comorbidity and its association with epilepsy-related factors in children and adolescents with epilepsy. One hundred consecutive patients with active epilepsy, aged 6–16 years, were screened for behavioral comorbidity using the Child Behavior Checklist and those who qualified as having behavioral comorbidity were compared with those who did not have it. Behavioral comorbidity was found in 43 of 100 participants. Being treated with antiepileptic drug polytherapy (odds ratio 6.3, 95% confidence interval 1.4–17.3, p = 0.01) independently predicted behavioral comorbidity in the patients studied. The demonstrated high frequency of behavioral comorbidity in children with epilepsy suggests that pediatricians and pediatric neurologists should be sensitive to this fact in order to identify and manage behavioral comorbidity in children with epilepsy.     

精神分裂症患者自知力与内在耻感的相关性研究(英文)

背景精神分裂症患者自知力和内在耻感的关系具有理论和实践上的重要性,因为这和患者寻找或接受治疗的意愿密切相关。目的研究中国大陆精神分裂症患者自知力和内在耻感的关系。方法共有65例住院治疗的精神分裂症患者和27例门诊治疗的精神分裂症患者(病程的中位数为4年)完成了两个中文版自评量表-精神疾病内在耻感量表(Internalized Stigma of Mental Illness,ISMI)和修订版病耻感经历问卷(Modified Consumer Experiences of Stigma Questionnaire,MCESQ)的测评。由高年资精神科医生采用阳性症状量表(Scale for Assessment of Positive Symptoms,SAPS)和阴性症状量表(Scale for Assessment of Negative Symptoms,SANS)评定了患者的精神病理症状。由两位高年资精神科医生采用简明精神病学量表中文版的自知力条目评定患者对自身精神疾病的认知,依据分数将患者分为有自知力组和无自知力组。结果有自知力组有49例患者,无自知力组为43例。无自知力患者的病程显著短于有自知力组,更可能为住院治疗者,并且具有更明显的阴性和阳性症状(仅仅表现在趋势上)。有自知力组患者在精神疾病内在耻感量表疏离分量表得分上显著高于无自知力组的患者,但是两个量表的其他分量表得分组间无统计学差异。两个量表48个条目中仅有4个条目得分存在组间差异。Logistic回归没有发现无自知力和两个耻感量表分数或症状量表得分之间存在相关性。结论在中国大陆精神分裂症门诊与住院患者中进行的本研究不支持以前的研究发现:即有自知力的精神分裂症患者会报告更多的耻感经历。本研究使用的耻感量表在中国地区的应用还需要进一步的修订和证实;未来需要对下列问题进行研究:选择不同诊断的患者、对自知力进行更精细的评估以及随时间推移自知力及病耻感经历的波动等等,进一步澄清精神分裂症患者中这两个现象间的复杂关系。     

Carbamazepine-exacerbated epilepsy in children and adolescents

Forty-nine children and adolescents whose seizures reportedly worsened while receiving carbamazepine (CBZ) were studied retrospectively. Twenty-six patients met criteria for excellent documentation of carbamazepine-exacerbated seizures. Four epileptic syndromes were particularly affected: childhood absence epilepsy; focal symptomatic, frontal lobe epilepsy; Lennox-Gastaut syndrome; and severe myoclonic epilepsy of infancy. Eight of the 26 patients developed new-onset absence seizures and three patients with established absence epilepsy experienced absence status. Other seizure types, including atonic, tonic-clonic, and myoclonic, developed in eight patients treated with CBZ, and new generalized spike-and-wave discharges were observed in electroencephalograms of nine patients. CBZ is a widely used, effective antiepileptic drug, particularly for partial or partial complex seizures; however, if uncontrolled, generalized seizures occur after CBZ is prescribed for children or adolescents with absence or mixed seizures, a trial of CBZ discontinuation is warranted. The data reported here do not permit calculation of the incidence of this phenomenon.     

Art therapy focus groups for children and adolescents with epilepsy

Children with epilepsy are at risk for numerous psychological and social challenges. We hypothesized that art therapy focus groups would enhance the self-image of children and adolescents with epilepsy. Sixteen children with epilepsy, ages 7-18 years, were recruited from pediatric neurology clinics at the University of Wisconsin to participate in four art therapy sessions. Pre-group assessments included psychological screens (Piers-Harris Children's Self-Concept Scale; Childhood Attitude Toward Illness Scale; Impact of Childhood Neurologic Disability Scale) and art therapy instruments (Formal Elements Art Therapy Scale; Seizure Drawing Task; Levick Emotional and Cognitive Art Therapy Assessment). Developmental levels of drawings were significantly below age-expected standards. Following completion of focus groups, a repeat Childhood Attitude Toward Illness Scale showed no differences between pre- and post-test scores on any measure of this scale. However, subjects and parents were uniformly positive about their group experiences, suggesting a qualitative benefit from participation in art therapy focus groups.     

Relations of internalized stigma with temperament and character in patients with schizophrenia

Objective

The aim of the study was to assess the associations between self-stigma and temperament and character dimensions.

Methods

One hundred twenty outpatients with diagnosis of schizophrenia, established with Mini International Neuropsychiatric Interview were consecutively included in the study. Self-stigma was assessed with Internalized Stigma of Mental Illness (ISMI), personality dimensions with Temperament and Character Inventory, and psychopathology with Positive and Negative Symptom Scale.

Results

The results showed that higher level of harm avoidance, lower self-directedness, and persistence correlated with ISMI and all its subscales. Self-transcendence correlated with ISMI subscales alienation, discrimination, and stigma resistance. Regression analyses controlling for psychopathology, age, length of illness, and number of hospitalizations revealed that higher level of harm avoidance and low self-directedness predicted internalized stigma.

Conclusion

The finding suggests that the experience of self-stigma is related to personality dimensions. Interpretations of these findings include the possibility that, irrespective of patients' psychopathology or functional characteristics, experience of self-stigma and its consequences might depend on personality dimensions. Further studies are needed.     

Sleep and epilepsy in children and adolescents

Epilepsy and sleep disorders are considered by many to be common bedfellows. Several sleep phenomena may occur during nighttime taking a wide variety of forms and which can mimic seizures. Although most seizure sub-types have the potential to occur during sleep or wakefulness, sleep has a well-documented and strong association with specific epilepsy syndromes. Seizures in sleep also tend to occur during lighter stages of non-REM (NREM) sleep. The neurophysiologic process involved in the deepening of NREM sleep may also facilitate both seizures and IEDs. Epilepsy per se and/or seizures themselves promote sleep disruption and significantly affect the quality, quantity, and architecture of sleep. There are many causes of sleep disruption in patients with epilepsy, including inadequate sleep hygiene, coexisting sleep disorders, and circadian rhythm disturbances. Seizures themselves can disrupt sleep, even when they occur during wakefulness. Anti-epileptic drugs (AEDs) can also alter sleep in positive and negative ways, and these effects are independent of anticonvulsant actions. The end result of sleep disruption is excessive daytime sleepiness, worsening seizures, and poor quality of life. Screening for sleep disorders in the epilepsy population and appropriate intervention strategies will lead to overall improved quality of life and seizure control.     

Risk factors for psychogenic nonepileptic seizures in children and adolescents with epilepsy

There is evidence that psychogenic nonepileptic seizures (PNES) remain underdiagnosed, especially in children and adolescents. Diagnosis of such events is even more difficult in patients that do have epilepsy, leading to delayed diagnosis and treatment and, consequently, iatrogenic complications. This study aimed to evaluate possible risk factors in children with epilepsy who had PNES. Seizures and epileptic syndromes were classified according to International League Against Epilepsy guidelines. Patients were evaluated with a structured psychiatric anamnesis and classified according to the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition; Classification of Mental and Behavioral Disorders: Diagnostic Criteria for Research; and Schedule for Affective Disorders and Schizophrenia for School-Age Children--Epidemiological Version. Risk factors such as head trauma, physical, sexual and psychological abuse, and psychiatric diagnoses, among others, were investigated. Family history of epilepsy and psychiatric illness were detected by review of medical records and/or follow-up interviews. Gender was not a predictive factor, and although older children had a higher risk for PNES, younger children also presented truly psychogenic events mimicking epileptic seizures. The most common associated psychiatric diagnosis was depression. Family histories for epilepsy and psychiatric illness were a frequent finding. An inadequate family environment was more common than sexual or physical abuse. Current knowledge obtained from adults with PNES has been used to understand children with PNES. However, this study of children with epilepsy revealed some similarities and many differences. These features may help to identify predictive factors in a population in need of adequate diagnosis of and therapy for this long-lasting pathology.     

Language and social functioning in children and adolescents with epilepsy

Individuals with epilepsy have difficulties with social function that are not adequately accounted for by seizure severity or frequency. This study examined the relationship between language ability and social functioning in 193 children with epilepsy over a period of 36 months following their first recognized seizure. The findings show that children with persistent seizures have poorer language function, even at the onset of their seizures, than do their healthy siblings, children with no recurrent seizures, and children with recurrent but not persistent seizures. They continue to demonstrate poorer language function 36 months later. This poor language function is associated with declining social competence. Intervention aimed at improving social competence should include consideration of potential language deficits that accompany epilepsy and social difficulty.     

An integrative model of internalized stigma and recovery-related outcomes among people diagnosed with schizophrenia in rural China

Purpose

Internalized stigma, an adverse psychological process, severely impedes the lives of people diagnosed with schizophrenia and restricts them from social integration and recovery. The aim of this study was to empirically evaluate an integrative model of relationship between internalized stigma and patients’ recovery-related outcomes among people diagnosed with schizophrenia in a rural Chinese community.

Method

A total of 232 people diagnosed with schizophrenia in Xinjin, Chengdu, participated in this study and completed measures of internalized stigma, social interaction, perceived social support, social functioning, and symptoms. The internalized stigma of mental illness scale (ISMI) was used to measure the internalized stigma. Path analysis was used to test the association between internalized stigma and recovery-related outcomes.

Results

There were no significant differences in mean scores of ISMI by gender, age (18–64 years and ≥ 65 years), education, marital status, or economic capacity. Internalized stigma was negatively associated with perceived social support and social interaction. Furthermore, higher level of internalized stigma was associated with impaired social functioning, and a lower level of social functioning was significantly associated with more severe symptoms.

Conclusion

Internalized stigma is associated with poor social interaction and weakened perceived social support in people diagnosed with schizophrenia, and is linked negatively to outcomes in their recovery. It is essential to tailor interventions related to reducing internalized stigma within a Chinese context and evaluate the effectiveness of anti-stigma intervention on recovery for people diagnosed with schizophrenia.

     

Self-disclosure to the best friend: friendship quality and internalized sexual stigma in Italian lesbian and gay adolescents

This study is the first contribution to the understanding of gender differences in best friendship patterns of adolescents sexual minorities. We explored friendship patterns, self-disclosure, and internalized sexual stigma in an Italian sample of lesbian (N?=?202) and gay (N?=?201) adolescents (aged 14-22 years). We found gender differences in cross-sex and cross-orientation patterns of best friendship. Gay men (52%) reported more cross-sex friendships than lesbians (20%). The 52% of participants had cross-orientation friendships, and no differences were found between lesbians and gay men. Lesbian and gay men with a cross-orientation best friend showed a lower level of internalized sexual stigma. Gay men with cross-orientation friendship showed a low level of internalized sexual stigma and less conflict with a best friend. For gay men and lesbian participants, self-disclosure to the best friend was better predicted by internalized sexual stigma and self-disclosure. Future studies may provide direct comparisons between heterosexual and sexual minority individuals.     

Drug compliance of children and adolescents with epilepsy.

BACKGROUND: Compliance behavior depends on the specific clinical situation, the nature of the illness, and the treatment program. The aim of this study was to determine the rate of drug compliance in families caring for a child or adolescent with epilepsy and to describe some associated factors. METHODS: All the patients with epilepsy under 18 years of age who were attending the Motahary Clinic of Shiraz for a six-month period and their families were interviewed. RESULTS: The total number of participants was 181 patients. Drug compliance was satisfactory in 72.4% of the patients. Etiology of epilepsy, mono-therapy versus poly-therapy, duration of the disease, age of the patient, accompanying disease, parental smoking, parental education and living in urban versus rural areas did not significantly influence the drug compliance but maternal age was significantly higher in patients with poor compliance. Also, patients with positive family history of epilepsy had more noncompliance. Moreover, family size had a significant effect on drug compliance. Finally, patients using phenobarbital were more complaint than other patients. CONCLUSIONS: In this study, drug compliance was satisfactory in almost three-fourths of the patients with epilepsy. There was no significant association between noncompliance and the cause of epilepsy, duration of the disease, socio-economic status (parental smoking, living place, education) and number of drugs used to treat the illness. But paying attention to medication education for patients and parents, decreasing the complexity of the treatment regimen and younger possibly more motivated mothers in a small family, increased the drug compliance.     

Social competence of children and adolescents with epilepsy.

BACKGROUND: This study compared children and adolescents with epilepsy with their healthy peers on measures of social competence. METHODS: Children and adolescents with epilepsy (70 subjects aged 11-18 years; 47.1% girls) and their healthy peers in control group (95 subjects aged 11-18 years; 50.9% girls) were compared on measures of social competence from the Child Competence Checklist (part of Child Behavior Check List). The questionnaires were completed by the parents. All participants were of normal intelligence. RESULTS: The difference of means of total T scores for subscales of sociabilitiy and activities in the epilepsy group and in the control group were statistically significant (p<0.05). The results showed that 5.7% of children and adolescents with epilepsy were in the clinical range compared to 2.1% of subjects in control group. The girls with epilepsy demonstrated greater problems with social competence (45.8+/-8.27) than boys with epilepsy (48.1+/-8.27) and this difference was statistically significant (p<0.05). Multiple analysis of variance of T scores for social competence subscales related to neurobiological variables in the group of participants with epilepsy demonstrated a statistically significant association of reduced sociability with multiple generalized seizure types (F=4,405; d.f.=2; p<0.05). CONCLUSIONS: The study clearly shows that epilepsy is a limiting factor for social competence of children and adolescents.     

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.     

Response to rehabilitation of children and adolescents with epilepsy

One hundred fifty-six children and adolescents with epilepsy from six Italian rehabilitation units were retrospectively enrolled to define the proportion of patients with epileptogenic developmental disorders who benefit from comprehensive rehabilitation programs and to identify factors predicting treatment response. The rehabilitation programs were classified as neuromotor, psychomotor, and speech and language. For each program, the response was coded as present or absent according to the caring physician's judgment. Selected demographic and clinical variables were correlated to treatment response. Neuromotor rehabilitation was performed in 86 cases (55%), psychomotor rehabilitation in 54 cases (34%), and speech and language rehabilitation in 40 cases (26%). Response rates were 58, 74, and 90%, respectively. Independent negative predictors of treatment response included severity of functional impairment (odds ratio=0.02, 95% confidence interval=0.01-0.14) and daily seizures (odds ratio=0.22, 95% confidence interval=0.08-0.58).     

Seizure severity in children with epilepsy is associated with their parents' perception of stigma

AimsTo develop and implement interventions to improve the quality of life (QOL) in children with epilepsy, it is important for clinicians and researchers to understand the effects of the children's parents' perception of stigma. The purpose of this study was to identify a relationship between patient clinical characteristics and perception of stigma in the parents of children with epilepsy.MethodsParents of children with epilepsy were recruited from our university hospital between April 1, 2005 and March 31, 2012. Items for the Parent Stigma Scale were developed from the literature and open-ended interviews with parents of children with epilepsy about their concerns and fears, including those related to stigma. Parents were asked to respond to five items, each on a 5-point scale from 1 (strongly disagree) to 5 (strongly agree). Assessments were performed for each clinical characteristic, such as child's sex, age at seizure onset, family history of epilepsy, seizure frequency, presence of status epilepticus (SE), presence of treatment-related adverse events, and the scores of each scale.ResultsA total of 52 parents of children with epilepsy and 10 parents of healthy children were enrolled in the study. Parents of children with epilepsy showed significantly higher scores on the questionnaire than parents of healthy children. In multiple regression analysis, greater perceptions of stigma were associated with a seizure frequency of more than one per month (p = 0.0036, B = 1.104, β = 0.402). In contrast, the presence of prior febrile seizures (p = 0.0034, B = − 1.297, β = − 0.308) and family history of epilepsy (p = 0.0066, B = − 1.613, β = − 0.277) were associated with lower perceptions of stigma. Greater parental perceptions of stigma were seen with the presence of monthly seizures.ConclusionsParents of children with epilepsy are at risk of significant perceptions of stigma. Seizure severity, indicated by the presence of monthly seizures, was associated with greater perceptions of stigma in parents. In addition, the presence of prior febrile seizures and family history of epilepsy were associated with fewer perceptions of stigma. The findings of this study emphasize the importance of acknowledging and addressing parental perceptions of stigma.