Determinants of felt-stigma in adolescents with epilepsy: Is it the same story?

PURPOSE: The present study aimed to investigate previously researched variables in adult people with epilepsy (PWE), which include felt stigma, perceived overprotection, concealment of epilepsy, and epilepsy-related concerns for adolescents with epilepsy (AWE). Another goal was to determine the reported levels of these variables and explore the relationships among them, as well as their associations with demographic and clinical factors. Additionally, we also investigated whether clinical and demographic variables create significant changes in these variables. Lastly, we aimed to determine the variables that predict felt-stigma in AWE. METHODS: On hundred and nineteen AWE aged between 10 and 18 were included in the study by using convenience sampling. Participants received the scales and demographic information form either in face to face meeting or via a Zoom session. RESULTS: Nearly half of the participants stated high level of felt stigma, perceived overprotection and concealment of epilepsy, while more than half reported concerns about their future/occupational prospects. Also, felt stigma had significant relations with concealment of epilepsy and concerns related to epilepsy. Early adolescents were under more risk for perceived overprotection, while late adolescents had higher concerns related to future/occupation. Females reported more felt stigma. Finally, felt stigma was predicted by concealment, concerns related to future/occupation, and concerns related to social life. CONCLUSION: The variables that explain the felt-stigma in AWE appear to be quite similar to those in adult PWE.

Overprotection and determinants of overprotection in adults with epilepsy.

PURPOSE: To examine the perceived overprotection of adult people with epilepsy (PWE) by using a specifically developed novel scale. The study also investigated whether perceived overprotection is associated with particular demographic or clinical variables. METHODS: This cross-sectional study is based on responses from 200 adult PWE. The participants completed a clinical-demographic questionnaire, the perceived overprotection scale, felt-stigma scale, concealment of epilepsy scale and epilepsy concern scale. RESULTS: One-way ANOVA results show that perceived overprotection was significantly greater among participants with lower income and levels of education. The highest number of affirmative responses in the perceived overprotection scale were related to going out alone and being given fewer family responsibilities due to epilepsy. Hierarchical regression results show that concerns related to social life and to future and occupation were significant predictors of high perceived overprotection. CONCLUSION: Psycho-social factors, specifically concerns, seem to be more important than epilepsy-related variables in explaining perceived overprotection in adult PWE.

Development of the perceived stigma scale and the concealment of epilepsy scale for the Turkish population.

The aim of this study was to develop two culture-specific scales to measure the level of felt stigma, and level of concealment of Turkish adult people with epilepsy (PWE). For this purpose, a 10-item felt-stigma scale and a 17-item disclosure of epilepsy scale were developed and then applied to 200 adult PWE. After item and factor analyses of the stigma scale, the 10 items with a one-factor solution explained 45.6% of the variance with a 0.86 internal consistency value. Higher scores represent higher felt stigma. The concealment of epilepsy scale has 17 items loaded on one factor, which explained 45.1% of the variance. Cronbach's alpha coefficient was found to be 0.92. The higher the score, the higher the concealment of illness by the participant. For convergent validity, the relationship between stigma and disclosure scales was examined, and a positive significant relation (r=0.64, p<0.000) was found.

"It takes a village" to support the vocabulary development of children with multiple risk factors.

Data from a nationally representative sample from Turkey (N = 1,017) were used to investigate the environmental factors that support the receptive vocabulary of 3-year-old children who differ in their developmental risk due to family low economic status and elevated maternal depressive symptoms. Children's vocabulary knowledge was strongly associated with language stimulation and learning materials in all families regardless of risk status. Maternal warmth and responsiveness supported vocabulary competence in families of low economic status only when maternal depressive symptoms were low. In families with the highest levels of risk, that is, with depression and economic distress jointly present, support by the extended family and neighbors for caring for the child protected children's vocabulary development against these adverse conditions. The empirical evidence on the positive contribution of extrafamilial support to young children's receptive vocabulary under adverse conditions allows an expansion of our current theorizing about influences on language development.

A comparative study of health related quality of life, psychological well-being, impact of illness and stigma in epilepsy and migraine.

This study aimed to show the difference of epilepsy from another chronic neurological disorder with episodic manifestations (CDEM): migraine. Seventy persons with epilepsy (PWE), 56 persons with migraine (PWM) and 45 healthy control participants (HCs) were included. The groups were compared in terms of demographics, quality of life, depression and self-esteem. The PWE and PWM were also compared with regard to stigma, impact of the illness, disclosure, application of spiritual/traditional healing methods, limitations, most affected life areas, and restrictions. Results showed that the PWM had lower quality of life values than the PWE and the HCs, while there was no difference among the groups in depression and self-esteem. Results also show higher unemployment levels and lower marriage rates for the PWE, where education levels were equal. Although the PWM had higher impact of illness values, the PWE were shown to have higher stigma, more concealment behavior, and higher traditional/spiritual healing application ratios. Also, the PWM emphasized the importance of being "able to fulfil daily living, social and work activities", while the PWE emphasized the need for "independence" constantly. These results indicate that, although both migraine and epilepsy are CDEMs, they have different levels of impact on patients' lives. The impacts are socially greater in epilepsy and extend beyond the neurological condition itself.

Familiarity with, knowledge of, and attitudes toward epilepsy in Turkey.

The aims of the study described here were to investigate familiarity with, knowledge of, and attitudes toward epilepsy and to assess indicators of positive attitudes toward epilepsy. Questionnaires previously developed for the Turkish population were used to assess knowledge and attitudes. Data were collected from 1354 randomly selected adults. Three-quarters of the sample had heard something about epilepsy, and almost half of the sample personally knew someone with epilepsy. The sample had a moderate level of knowledge of and favorable attitudes toward epilepsy in general. Variables that predicted positive attitudes were young age, male gender, and high level of knowledge of epilepsy. The results for both knowledge and attitudes indicate that the findings of the study are largely in line with previous studies, but where there is wide variability among previous findings, the findings for the Turkish population lie, just as Turkey does geographically, between those of the East and West.

Multiple impacts of epilepsy and contributing factors: findings from an ethnographic study in Vietnam.

We investigated issues related to treatment, impact of epilepsy, attitudes toward epilepsy, and disclosure in Vietnam through in-depth interviews with people with epilepsy (PWE) and their family members. We found that although participants prefer Western to traditional treatment, they experience problems in accessing different kinds of antiepileptic drugs and higher-level treatment facilities and with respect to treatment expenses. The impact of epilepsy can be observed in a wide range of daily living activities which include working, education, marriage, and family formation. Although both families and society at large do not hold negative attitudes toward epilepsy, most PWE reported a sense of burden to others. Both PWE and family members generally prefer disclosing epilepsy rather than concealing it from others. Our findings strongly suggest a need in Vietnam for different types of antiepileptic drugs and epilepsy support information for PWE, family members, and the general public.

Remembering the first seizure and the diagnosis of epilepsy: how much impact do they have in our lives?

The aim of the study described here was to investigate what people with epilepsy (PWE) remember about their first seizures and the diagnoses they received, as well as what healthy control participants (HCP) remember about the first seizure they witnessed. Forty PWE were asked to recall in detail their first seizures and their diagnoses, and 40 HCP were asked to recall the first seizure they witnessed. All participants also rated aspects of their subjective reactions to these experiences. Although the first seizure was more surprising and received more covert rehearsal than the diagnosis, PWE recalled equal numbers of details about the two events. Free recall protocols showed that the memory narratives were longer for the first seizure than for the diagnosis. HCP also showed almost perfect recall for the personal circumstances of the first seizure they witnessed. These findings, combined with strong emotional reactions to these experiences, suggest that they lead to detailed and lasting memories.

Developing two different measures for assessing knowledge of and attitudes toward epilepsy for the Turkish population.

The aim of this study was to develop two new scales for assessing Turkish public's knowledge of epilepsy and attitudes toward it. A 26-item knowledge scale and a 15-item attitude scale were first developed and then tested using a random selection of adults aged 18 n = 613) from different parts of Istanbul. After item and factor analyses of the knowledge scale, 10 items were omitted. Varimax rotation resulted in three underlying components that explained 35.7% of the variance. As a reliability assessment, the Kuder-Richardson-20 coefficient was 0.72. For the attitude scale one item was excluded after factor analyses. Varimax rotation revealed two underlying components that explained 46.31% of the variance. Cronbach's alpha was found to be 0.84. Additionally, it was found that subjects with more knowledge of epilepsy had more positive attitudes toward epilepsy (r = .36, P<0.01).

Changes in quality of life and self-perspective related to surgery in patients with temporal lobe epilepsy.

PURPOSE: To evaluate changes in intractable epilepsy patients in terms of quality of life, depression, anxiety, stigma, and impact of epilepsy before and after surgery. METHODS: Twenty patients with intractable temporal lobe epilepsy who were waiting for surgery (pre-SAH group) and 21 patients who had already undergone surgery (post-SAH group) were studied. All patients received SF-36, Beck Depression Inventory, State-Trait Anxiety Inventory, stigma and impact of epilepsy inventories, and a form asking their own perspectives about epilepsy and surgery. RESULTS: Post-SAH group scored higher on all subscales of SF-36, with only RE scores being significantly better (t=-1.98, P=.05). Although depression, anxiety, and stigma scores were higher in pre-SAH group, only impact of epilepsy scores were significantly higher in pre-SAH group (t=-2.951, P=.005). Seizure frequency and comorbidity had significant effects on QOL where amount of AEDs and QOL were negatively related (r=-0.318, P<0.05). Both groups stated lack of independence and social activities as the main concern (48.8%) and recovery from epilepsy as the most important expectation from surgery (85.4%). Post-surgical group mentioned the difference in their life after surgery as independence and increase in social activities (47.6%). CONCLUSION: QOL of patients after surgery was found to be better than before surgery. Results also revealed that seizure frequency, comorbidity, and anti-epileptic medication affected health related QOL negatively. Impact of epilepsy levels was found to be higher among the pre-SAH patients. Finally, independence seemed to be the most important concern and gain for Turkish epilepsy patients.