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1.
BJPsych Int ; 21(1): 17-20, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38304408

RESUMO

We conducted an online questionnaire-based cross-sectional study to clarify psychiatrists' perspectives on virtual networking events. We compared two groups of respondents: those who had participated in virtual networking events (experienced group, n = 85) and those who had not (inexperienced group, n = 13). The experienced group had a greater level of agreement than the inexperienced group that virtual events were generally useful and helped with forming professional relationships and improving professional skills. Respondents in the experienced group considered the ease of participation and low financial burden to be advantages of virtual networking meetings and difficulties in building friendships and socialising to be disadvantages.

2.
Epilepsy Behav ; 151: 109600, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-38160580

RESUMO

AIM: We translated the Epilepsy Self-stigma Scale (ESSS) into Turkish and aimed to examine the Turkish version ESSS (ESSS-T) validity and reliability. MATERIALS AND METHOD: From April to August 2023, patients with epilepsy (PWE) were recruited from the neurology outpatient clinic of Ataturk University Hospital in the eastern Turkish city of Erzurum (inclusion criteria: age 18 years or older and adequate reading and speaking ability in Turkish). We conducted our survey using a self-administered questionnaire. The questionnaire consisted of the ESSS-T after appropriate translation by back-translation, and self-esteem (the Rosenberg's Self-Esteem Scale, RSES), depression (the Neurological Disorders Depression Inventory for Epilepsy, NDDI-E), and general stigma (the Stigma Scale for Epilepsy, ESE) for construct validity. Exploratory factor analysis (EFA) and confirmatory factor analysis (CFA) were used to test factorial validity. Also, Cronbach's alpha coefficient was calculated to verify reliability. RESULTS: Of the 126 patients, 106 agreed to give informed consent and responded to the questionnaire (84.1 % response rate). The results of EFA suggested the same three-factor structure as in the original version, but CFA showed some limitations in interpreting the three-factor structure and it may be safer to understand it as a unifactorial structure. The alpha coefficients were also validated by the ESSS-T. The alpha coefficients were α = 0.74 for the ESSS-T scale as a whole and α = 0.69-0.74 for each subscale, which were generally acceptable values. CONCLUSION: The Turkish version of the ESSS proved valid and reliable. It is a measurement tool with a three-dimensional structure. It can be used to assess the self-stigmatization of patients with epilepsy in Turkey.


Assuntos
Epilepsia , Estigma Social , Humanos , Adolescente , Turquia , Reprodutibilidade dos Testes , Epilepsia/diagnóstico , Estereotipagem , Inquéritos e Questionários , Psicometria
3.
Epilepsy Behav ; 148: 109469, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37844440

RESUMO

PURPOSE: Extant research elucidating the domains of knowledge and bias on epilepsy has consistently underscored a deficiency in cognizance and an inclination toward bias within non-urban areas. Investigations into geographical disparities concerning epilepsy awareness and prejudice within the Japanese context remain conspicuously absent. To address this lacuna in the literature, we undertook a post-hoc analysis to elucidate the discernible regional differentials in epilepsy awareness and the associated stigma. METHODS: From July to August 2021, we conducted an internet questionnaire survey for 310 people with epilepsy (PWE) and 213 ordinary people without epilepsy who registered on the database of the Japanese Research Company. We inquired PWE to answer the Epilepsy Self-Stigma Scale (ESSS), the Rosenberg Self-Esteem Scale (RSES), and the Epilepsy Knowledge Scale (EKS). We inquired to answer ordinary people without epilepsy EKS. We analyzed residential addresses separately for Greater Tokyo and non-urban areas by comparing the degree of knowledge of people with epilepsy and people without epilepsy. RESULTS: The average knowledge of people with and without epilepsy in the Greater Tokyo area was 39.60 and 28.43 points, although in non-urban areas (nine regions from all over Japan except for the Greater Tokyo, Tokai region, and Kinki region), the knowledge averages were 38.44 and 28.66 points of 100. In addition, self-stigma was highest in the Greater Tokyo area: 22.99 and in non-urban areas: 22.77. An two-way ANOVA with knowledge as the dependent variable and epilepsy diagnosis status and region (Greater Tokyo area/non-urban areas) as the independent variables revealed no interaction between diagnosis and region (F(1,346) = 1.48, η2 = 0.003). Knowledge was significantly higher in PWE than in people without epilepsy, but we could not identify any significant difference between ESSS (t = 0.24, d = 0.03) and RSES (t = 1.16, d = 0.16) in the Greater Tokyo/non-urban areas. CONCLUSIONS: We obtained specific information about regional differences in the level of knowledge and stigma about epilepsy in Japan. Because Japan underwent educational reforms after World War II and more than 90% of the population received equally advanced education, the results found no regional differences in knowledge and stigma about epilepsy. We believe collecting information about the respondents' birth and upbringing environment and conducting a thorough investigation is necessary in the future.


Assuntos
Epilepsia , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Japão/epidemiologia , Tóquio/epidemiologia , Estigma Social , Epilepsia/epidemiologia , Inquéritos e Questionários
4.
Heliyon ; 9(8): e19311, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-37654450

RESUMO

Psychosocial education programs for people with epilepsy (PWE) can improve epilepsy knowledge and quality of life (QOL), whereas the availability of these programs is limited in Japan compared to other developed countries. This study evaluated the feasibility and effectiveness of a one-day group psychosocial education program named the "one-day Epi-school" for PWE and their relatives. The previous program (Epi-school) required consistent participation in three sessions, resulting in problems with program continuation rates, with 45.5% of PWE completing the program. Therefore, the "one-day Epi-school" was designed to provide information about epilepsy and address psychosocial issues related to coexisting epilepsy symptoms, such as self-stigma and self-esteem, while allowing participants to accomplish these programs within a single day. The study recruited a sample of 32 PWE and their relatives from a psychiatric clinic. They completed assessments of knowledge, self-stigma, self-esteem, and quality of life before and after the program. The results exhibited a significant increase in epilepsy knowledge after the intervention for PWE and their relatives. However, we could not identify other significant changes. The participation completion rate was 100%. The post-participation questionnaire proved beneficial to interact with other PWE. The study suggests that a single intervention, e.g., the one-day Epi-school, may be insufficient for enhancing other factors, yet it can be an adequate opportunity for learning and interacting. It is also necessary to implement future studies with larger sample sizes, a control group, and prolonged follow-up periods for the program's value and validity.

5.
Asian J Psychiatr ; 86: 103679, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-37364332

RESUMO

Since 2002, the Japan Young Psychiatrists Organization (JYPO) has conducted an annual face-to-face Course for Academic Development of Psychiatrists (CADP). Since 2021, we held two international online meetings and studied whether it was possible to acquire professional and leadership skills. We found that participants were able to acquire knowledge and become acquainted with professional and leadership skills in online meetings. However, they didn't enough enable participants to get to know each other, develop friendships, or acquire professional and leadership skills. The advantages of online meetings included lower cost, avoiding infection during the pandemic, and the easy use of course materials.


Assuntos
Liderança , Psiquiatria , Humanos , Japão , Pandemias
6.
Epilepsia Open ; 8(3): 946-958, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-37254471

RESUMO

OBJECTIVE: Self-stigma is the internalization of unfavorable public perceptions, which people with epilepsy (PWE) frequently experience. PWE with strong self-stigma have low self-esteem and are less likely to engage in treatment behavior. The Epilepsy Self-Stigma Scale (ESSS) has been developed and validated in Japan. We translated the ESSS into German for this study to examine its reliability and validity. METHODS: We created the German version of ESSS (ESSS-G) based on the original Japanese version. From May to October 2022, we recruited out- and inpatients from Bethel Epilepsy Centre, University Hospital for Epileptology, for psychometric evaluation. Inclusion criteria were an age of ≥18 years, sufficient reading and speaking skills in German, and the ability to comprehend the German questionnaires. Participants also completed the Rosenberg Self-Esteem Scale (RSES), Neurological Disorders Depression Inventory for Epilepsy (NDDI-E), Generalized Anxiety Disorder 7 (GAD-7), Epilepsy Knowledge Scale, and items on "overall quality of life (QOL)" and "overall health" (items from QOLIE-31). RESULTS: One hundred twenty-eight of 146 patients asked to participate granted informed consent and completed the study questionnaire (87.7% response rate). 115 cases were analyzed since 13 did not match the inclusion criteria. The analysis revealed a single factor explaining 49.2% of the total variance. All factor loadings were >0.40, and the reliability was high (Cronbach's α = 0.80). Higher ESSS total scores were associated with higher anxiety (GAD-7, r = 0.54, P < 0.001) and depression (NDDI-E, r = 0.45, P < 0.001), lower self-esteem (RSES, r = -0.41, P < 0.001), overall QOL (r = -0.40, P < 0.001), and overall health (r = -0.35, P < 0.001), but not with knowledge about epilepsy (r = 0.03, P = 0.770). In Germany, females, younger individuals, patients with earlier seizure onset, and those with generalized epilepsy had significantly higher self-stigma. SIGNIFICANCE: The German version of the ESSS proved reliable and valid. It allows to evaluate the efficacy of treatment strategies in lowering self-stigma and conducting intercultural comparisons of epilepsy self-stigma.


Assuntos
Epilepsia , Qualidade de Vida , Autoavaliação (Psicologia) , Estigma Social , Adolescente , Feminino , Humanos , Ansiedade/psicologia , Epilepsia/psicologia , Reprodutibilidade dos Testes
7.
Heliyon ; 8(12): e12254, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36578391

RESUMO

Objective: To improve the life quality of people with epilepsy, it is necessary to provide comprehensive epilepsy care and disseminate accurate information related to epilepsy to the public. In Japan, reports of traffic accidents involving people with epilepsy started to draw attention in the media in 2011. Ever since that, the association between the image of epilepsy from the general public, "Epilepsy," and "Danger," was more robust in 2013. Since 2017, no previous surveys have examined the perceptions and knowledge of epilepsy among the public in Japan. As an essential source of information for epilepsy care, we conducted a nationwide Internet-based survey to elucidate the current state of knowledge and perceptions of epilepsy among the public without epilepsy in Japan. Methods: We conducted an online survey from July 29 to August 2, 2021, with 213 respondents (115 male, 97 female, and one unidentified; mean age: 50.52 ± 12.34 years) registered with an online survey service in Japan. In this survey, we first questioned whether or not a respondent had epilepsy, and then those with epilepsy were excluded from participation. We collected basic demographic information, administered the Epilepsy Knowledge Scale (18 items), and asked the open-ended response question, "What kind of disease do you think epilepsy is? If you do not know, please describe epilepsy in your words." We adopted quantitative text analysis using KH Coder3 and co-occurrence network analysis to examine the connections between words. Results: Among the respondents, 92% have heard of epilepsy, and 26.8% have observed an epileptic seizure before the survey. The knowledge scale yields an average score of 27.96 ± 21.3 (out of 100), with the question with the highest percentage of correct responses being "People with epilepsy are just as capable as other people" at 51.64%. The question with the lowest percentage of correct responses was "If the person with epilepsy only has seizures during sleep, the person can have a driver's license," at 9.85%. The average number of Japanese characters responding to open-ended text questions was 10.45 ± 8.87 characters (including Kanji, Hiragana, and Katakana). We found that the word "froth" appeared more frequently with experience of observing a seizure, and the words "occur" and "brain" appeared more frequently with higher knowledge of epilepsy. Furthermore, comparing the sources of information from what they learned about epilepsy, the words "seizure," "faint," and "consciousness" appeared more frequently in school, with family and friends, and in newspapers and television, respectively. Conclusion: We identified the level of knowledge and perceptions of epilepsy among the general public in Japan in 2021. By analyzing the qualitative aspects of open-ended text responses, we gathered information that might be useful for informing the public of future efforts to provide accurate information related to epilepsy.

8.
Epilepsia Open ; 7(4): 792-801, 2022 12.
Artigo em Inglês | MEDLINE | ID: mdl-36225097

RESUMO

OBJECTIVE: Epilepsy carries a significant stigma. While there is some evidence that self-stigma accompanies a lack of knowledge about epilepsy, there are no studies in Japan. This study aimed to determine factors contributing to self-stigma in Japan. METHODS: We conducted an online questionnaire survey. Three hundred and ten patients completed the questionnaire (mean age of 47.8 ± 11.9) in contrast to the total registered users on the questionnaire site as 28 315 from Jul 29 to Aug 2, 2021. We asked about demographic variables, satisfaction with treatment, limitations in life, support status, seizure frequency, the Epilepsy Self-Stigma Scale (ESSS), the Rosenberg Self-Esteem Scale (RSES), and the Epilepsy Knowledge Scale (EKS). We conducted the statistical analysis on self-stigma, self-esteem, knowledge of epilepsy, and seizure frequency associations by Spearman's rank correlation. RESULTS: The mean value of the EKS was 40.19 ± 18.75, the ESSS was 17.69 ± 6.25, and the RSES was 26.02 ± 6.13. We identified a significant moderate negative correlation between self-esteem and self-stigma (P < .001, ρ = -.423), a significant weak positive correlation between self-esteem and knowledge (P = .005, ρ = .177), and a significant weak negative correlation between seizure frequency and self-stigma (P < .001, ρ = -.162). Of the 186 respondents who were working or studying, 91 (49%) participants had experienced any discrimination due to epilepsy. The use of psychosocial support, that is, participating in epilepsy self-help groups and educational programs, was 5.8%. SIGNIFICANCE: There was no correlation between the strength of self-stigma and the knowledge, while there was a positive correlation between self-esteem and knowledge (P = .005, ρ = .177). There was a negative and weak correlation between seizure frequency and self-stigma (p < .001, ρ = -.162). These results suggest that sufficient knowledge may improve the self-esteem and thus reduce the self-stigma. In addition, short-term treatment for seizure control is insufficient to reduce self-stigma. The dissemination for people to enable sufficient epilepsy knowledge and positive perceptions of epilepsy by increasing self-efficacy throughout a lifetime may reduce self-stigma.


Assuntos
Epilepsia , Estigma Social , Humanos , Adulto , Pessoa de Meia-Idade , Japão , Epilepsia/psicologia , Inquéritos e Questionários , Convulsões
9.
Epilepsia Open ; 2022 May 28.
Artigo em Inglês | MEDLINE | ID: mdl-35633311

RESUMO

OBJECTIVE: The impact of the coronavirus disease 2019 (COVID-19) pandemic on epilepsy care across Japan was investigated by conducting a multicenter retrospective cohort study. METHODS: This study included monthly data on the frequency of (1) visits by outpatients with epilepsy, (2) outpatient electroencephalography (EEG) studies, (3) telemedicine for epilepsy, (4) admissions for epilepsy, (5) EEG monitoring, and (6) epilepsy surgery in epilepsy centers and clinics across Japan between January 2019 and December 2020. We defined the primary outcome as epilepsy-center-specific monthly data divided by the 12-month average in 2019 for each facility. We determined whether the COVID-19 pandemic-related factors (such as year [2019 or 2020], COVID-19 cases in each prefecture in the previous month, and the state of emergency) were independently associated with these outcomes. RESULTS: In 2020, the frequency of outpatient EEG studies (-10.7%, p<0.001) and cases with telemedicine (+2,608%, p=0.031) were affected. The number of COVID-19 cases was an independent associated factor for epilepsy admission (-3.75*10-3 % per case, p<0.001) and EEG monitoring (-3.81*10-3 % per case, p = 0.004). Further, the state of emergency was an independent factor associated with outpatient with epilepsy (-11.9%, p<0.001), outpatient EEG (-32.3%, p<0.001), telemedicine for epilepsy (+12,915%, p<0.001), epilepsy admissions (-35.3%; p<0.001), EEG monitoring (-24.7%: p<0.001), and epilepsy surgery (-50.3%, p<0.001). SIGNIFICANCE: We demonstrated the significant impact that the COVID-19 pandemic had on epilepsy care. These results support those of previous studies and clarify the effect size of each pandemic-related factor on epilepsy care.

11.
Epilepsy Behav ; 126: 108487, 2022 01.
Artigo em Inglês | MEDLINE | ID: mdl-34922326

RESUMO

OBJECTIVE: This study aimed to investigate the factors affecting the unwillingness of physicians involved in epilepsy care to continue telemedicine during the coronavirus disease 2019 (COVID-19) pandemic in Japan. METHOD: This was a national-level cross-sectional survey initiated by Japan Young Epilepsy Section (YES-Japan) which is a national chapter of The Young Epilepsy Section of the International League Against Epilepsy (ILAE-YES). We asked physicians who conducted telemedicine in patients with epilepsy (PWE) during the COVID-19 pandemic at four clinics and 21 hospitals specializing in epilepsy care in Japan from March 1 to April 30, 2021. The following data were collected: (1) participant profile, (2) characteristics of PWE treated by telemedicine, and (3) contents and environmental factors of telemedicine. Statistically significant variables (p < 0.05) in the univariate analysis were analyzed in a multivariate binary logistic regression model to detect the independently associated factors with the unwillingness to continue telemedicine. RESULT: Among the 115 respondents (response rate: 64%), 89 were included in the final analysis. Of them, 60 (67.4%) were willing to continue telemedicine, and 29 (32.6%) were unwilling. In the univariate binary logistic regression analysis, age (Odds ratio [OR] = 1.84, 95% confidence interval [CI] 1.10-3.09, p = 0.02), psychiatrist (OR = 5.88, 95% CI 2.15-16.08, p = 0.001), hospital (OR = 0.10, 95% CI 0.01-0.94, p = 0.04), the number of COVID-19 risk factors in the participant (OR = 2.88, 95% CI 1.46-5.69, p = 0.002), the number of COVID-19 risk factors in the cohabitants (OR = 2.52, 95% CI 1.05-6.01, p = 0.04), COVID-19 epidemic area (OR = 4.37, 95% CI 1.18-16.20, p = 0.03), consultation time during telemedicine (OR = 2.51, 95% CI 1.32-4.76, p = 0.005), workload due to telemedicine (OR = 4.17, 95% CI 2.11-8.24, p < 0.001) were statistically significant. In the multivariate binary logistic regression analysis, workload due to telemedicine (OR = 4.93, 95% CI 1.96-12.35) was independently associated with the unwillingness to continue telemedicine. CONCLUSION: This national-level cross-sectional survey found that workload due to telemedicine among physicians involved in epilepsy care was independently associated with the unwillingness to continue telemedicine.


Assuntos
COVID-19 , Epilepsia , Médicos , Telemedicina , Estudos Transversais , Humanos , Japão , Pandemias , SARS-CoV-2 , Inquéritos e Questionários
12.
Epilepsy Behav ; 125: 108361, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34768059

RESUMO

OBJECTIVE: To identify the risk factors for psychological distress in electroencephalography (EEG) technicians during the coronavirus disease 2019 (COVID-19) pandemic. METHOD: In this national-level cross-sectional survey initiated by Japan Young Epilepsy Section (YES-Japan), which is a national chapter of The Young Epilepsy Section of the International League Against Epilepsy (ILAE-YES), a questionnaire was administered to 173 technicians engaged in EEG at four clinics specializing in epilepsy care and 20 hospitals accredited as (quasi-) epilepsy centers or epilepsy training facilities in Japan from March 1 to April 30, 2021. We collected data on participants' profiles, information about work, and psychological distress outcome measurements, such as the K-6 and Tokyo Metropolitan Distress Scale for Pandemic (TMDP). Linear regression analysis was used to identify the risk factors for psychological distress. Factors that were significantly associated with psychological distress in the univariate analysis were subjected to multivariate analysis. RESULTS: Among the 142 respondents (response rate: 82%), 128 were included in the final analysis. As many as 35.2% of EEG technicians have been under psychological distress. In multivariate linear regression analysis for K-6, female sex, examination for patients (suspected) with COVID-19, and change in salary or bonus were independent associated factors for psychological distress. Contrastingly, in multivariate linear regression analysis for TMDP, female sex, presence of cohabitants who had to be separated from the respondent due to this pandemic, and change in salary or bonus were independent associated factors for psychological distress. CONCLUSION: We successfully identified the risk factors associated with psychological distress in EEG technicians during the COVID-19 pandemic. Our results may help in understanding the psychological stress in EEG technicians during the COVID-19 pandemic and improving the work environment, which is necessary to maintain the mental health of EEG technicians.


Assuntos
COVID-19 , Angústia Psicológica , Estudos Transversais , Eletroencefalografia , Feminino , Humanos , Japão/epidemiologia , Pandemias , Fatores de Risco , SARS-CoV-2 , Estresse Psicológico/diagnóstico , Estresse Psicológico/epidemiologia , Estresse Psicológico/etiologia
13.
Epilepsia Open ; 6(4): 748-756, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34651460

RESUMO

OBJECTIVE: Self-stigma is the internalization of negative public attitudes and is often experienced by patients with epilepsy (PWE). Greater self-stigma is associated with lower self-esteem and hinders therapeutic behavior. The study aims were to develop the Epilepsy Self-Stigma Scale (ESSS) to assess self-stigma in PWE and to examine the scale's reliability and validity. METHODS: We created a test scale based on items from an existing stigma scale and the results of a previous qualitative analysis we conducted. We recruited 200 outpatients from departments specializing in epilepsy (psychiatry, neurology, and pediatric neurology) at four facilities in Tokyo and Saitama prefecture, Japan, between September and December 2020. Participants also completed the Rosenberg Self-Esteem Scale (RSES) and Beck Depression Inventory (BDI-II). RESULTS: Questionnaires were returned from 102 participants (response rate: 51%). After excluding two participants with incomplete questionnaires, data for 100 participants were analyzed (53 women, 47 men; mean age [standard deviation]: 39.86 [17.45] years). Exploratory factor analysis extracted eight items loading on three factors: internalization of stigma, societal incomprehension, and confidentiality. Cronbach's α for all items and each factor demonstrated acceptable internal consistency (α = 0.76-0.87). Test-retest reliability was confirmed using data from 21 participants who completed the scale twice (r = 0.72 to 0.90). ESSS total scores and subscale scores correlated with RSES and BDI-II scores (r = -0.30 to 0.55). The ESSS demonstrated substantial constructive validity. However, total scores did not significantly correlate with objective physician assessment of self-stigma. SIGNIFICANCE: The results showed that the eight-item ESSS has high reliability and validity. This scale could facilitate the examination of factors associated with self-stigma in PWE, which could inform the development of effective interventions for reducing stigma.


Assuntos
Epilepsia , Estigma Social , Adolescente , Criança , Epilepsia/diagnóstico , Feminino , Humanos , Masculino , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários
14.
Epilepsy Behav ; 118: 107912, 2021 05.
Artigo em Inglês | MEDLINE | ID: mdl-33744796

RESUMO

Criminal behavior by people with epilepsy (PWE) has often been discussed. However, there are limited studies on criminal victimization of PWE-in particular, how such victimizations occur. We identified criminal cases involving victims with epilepsy using databases containing criminal judgments and found 16 such cases between 1990 and 2019. Seven were homicide cases, including four filicide cases. In the four filicide cases, all the perpetrators had the intention of homicide-suicide; all the victims had intellectual disabilities or cerebral palsy; two of these victims had acted violently toward the family; and two mothers who perpetrated the crime against the victims had depression. It seemed that the comorbidities and problem behaviors of the victims were more strongly related to serious crimes by family caregivers than the epilepsy itself. To prevent victimization caused by family caregivers, reducing their stress levels is important. Defendants sometimes argued against objective evidence of a crime, claiming that epileptic seizure of PWE caused or was related to the death of victims. Legal and medical professionals involved in determining the manner of death need careful evaluation when sudden deaths of PWE occur.


Assuntos
Vítimas de Crime , Criminosos , Epilepsia , Homicídio , Humanos , Japão/epidemiologia , Julgamento
15.
Epilepsy Behav ; 113: 107545, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-33238235

RESUMO

INTRODUCTION: In epilepsy treatment, it is important for patients with epilepsy (PWE) to have accurate knowledge of epilepsy and to actively engage in treatment. In Japan, there are a few facilities for implementing learning programs for PWE, and their long-term usefulness has not been established. We conducted a pilot group psychosocial education program for PWE and their relatives in Japan. METHODS: Participants were PWE and their relatives who were 18 years old or older, were able to consent to participate in the study, and who were visiting the outpatient clinic of Saitama Medical Center from September 2019 to March 2020. As an intervention, we created a psychosocial educational program called "Epi-school" for PWE and their relatives, consisting of three sessions. Outcomes included patients' quality of life (QOL) measured with the epilepsy-31-P (QOLIE-31P), Rosenberg self-esteem scale (RSES), Stigma scale for chronic neurological disease (SSCI-8), and Epilepsy knowledge scale, before and after Epi-school. In addition, in a free-form questionnaire, we collected the impressions of patients and their relatives regarding the experience of participating in a group psychosocial education program. RESULTS: We examined 11 patients (two males, nine females) and 12 relatives (four males, eight females) who participated in Epi-school during the target period. The analyses revealed that only the scales measuring knowledge about epilepsy in the effect index showed significant increases in both patients and relatives after the program compared with before the program (patients: F [1,5.30] = 13.65, P < .05; relatives: F [1,4] = 17.50, P < .05). Moreover, a large effect size (d = 0.85) was obtained in patients, and a large effect size (d = 1.03) was obtained in relatives. In the open-ended questionnaire after participating in Epi-school, respondents reported changes in the psychological state of patients in the "learning epilepsy knowledge and coping methods", including changes in "acquired knowledge of illness" and "acquisition of coping with psychological aspects". Furthermore, it reports of "discovery/surprise", "thanks to medical staff", "interaction with other patients/relatives", and "new anxiety". In addition, "positive thoughts on treatment", "hopes for the future", "expectations for interaction with medical staff", "expectations for interaction with colleagues with the same disease", and "coming out of epilepsy" were reported. Regarding the psychological state of relatives after participating in Epi-school, it revealed "thanks to medical staff", "interactions with other patients/relatives", and "awareness of and remarks about other patients' statements". The results also revealed responses including "positive thoughts about treatment", "expectations of medical care", and "expectations of the community". DISCUSSION: The results confirmed that Epi-school led to improved knowledge, and psychological changes, including improved QOL and positive acceptance of epilepsy. Participants' awareness about epilepsy appeared to improve through encounters with other participants' attitudes toward epilepsy, possibly changing via the ways participants interacted. It is important to promote understanding of epilepsy, enhance the effects of treatment, and reduce psychosocial restrictions. CONCLUSIONS: Epi-school may be useful as part of epilepsy treatment to improve the QOL of PWE by making it easier for patients and their relatives to develop acceptance of living with epilepsy. The main limitation in the current study was the small sample size and the lack of a control group. In future studies, we plan to further investigate the usefulness of psychosocial education programs in Japan, including Epi-school, by increasing the sample size, including a control comparison, and collecting more comprehensive data. We hope that the current findings will encourage the provision of appropriate medical insurance funding for patient learning programs in Japan.


Assuntos
Epilepsia , Qualidade de Vida , Adolescente , Adulto , Epilepsia/terapia , Feminino , Humanos , Japão , Masculino , Projetos Piloto , Instituições Acadêmicas
16.
Epilepsy Behav ; 109: 106994, 2020 08.
Artigo em Inglês | MEDLINE | ID: mdl-32447041

RESUMO

The mental health of patients with epilepsy represents a substantial public health concern in Japan. For instance, the Japanese term for epilepsy, "tenkan", has the negative meaning of "mad" and "a violent temperament that is apt to be infatuated". Although epilepsy is now understood as a disease caused by abnormal neuronal activity in the brain, discrimination and stigma against people with epilepsy remain deeply rooted in Japanese culture. Understandably, this stigma can have a serious impact on the psychology and behavior of individuals with epilepsy. To our knowledge, no studies have clarified the formation process or examined the treatment of self-stigma in patients with epilepsy in Japan. Characterizing coping strategies and examining methods for reducing self-stigma will increase our understanding of the experiences of patients and facilitate effective psychiatric rehabilitation. Accordingly, the purpose of our study was to investigate the quality and degree of cognition regarding self-stigma and to examine coping strategies in patients with epilepsy living in the community. The participants were psychiatric outpatients aged 20-65 years who had been diagnosed with epilepsy and visited our psychiatric outpatient clinic between October 1 and December 31, 2016. We conducted semi-structured interviews with 20 patients who consented to participate. For data analysis, we used the content analysis method proposed. Our study revealed details of self-stigma in patients with epilepsy. Patients and their families are often aware of the presence of this self-stigma, and many do not know how to address it. In this study, we qualitatively examined self-stigma in patients with epilepsy on the basis of patient narratives. Per our findings, we would like to examine intervention methods for reducing self-stigma in patients with epilepsy.


Assuntos
Epilepsia/epidemiologia , Epilepsia/psicologia , Entrevista Psicológica/normas , Pesquisa Qualitativa , Autoimagem , Estigma Social , Adaptação Psicológica/fisiologia , Adulto , Conscientização/fisiologia , Centros Comunitários de Saúde Mental/normas , Epilepsia/terapia , Feminino , Humanos , Entrevista Psicológica/métodos , Japão/epidemiologia , Masculino , Pessoa de Meia-Idade , Pacientes Ambulatoriais/psicologia , Adulto Jovem
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