RESUMO
OBJECTIVE: To review the evidence of felt and enacted stigma and attitudes toward persons living with epilepsy, and their determining factors. METHODS: Thirteen databases were searched (1985-2019). Abstracts were reviewed in duplicate and data were independently extracted using a standardized form. Studies were characterized using descriptive analysis by whether they addressed "felt" or "enacted" stigma and "attitudes" toward persons living with epilepsy. RESULTS: Of 4234 abstracts, 132 met eligibility criteria and addressed either felt or enacted stigma and 210 attitudes toward epilepsy. Stigma frequency ranged broadly between regions. Factors associated with enacted stigma included low level of knowledge about epilepsy, lower educational level, lower socioeconomic status, rural areas living, and religious grouping. Negative stereotypes were often internalized by persons with epilepsy, who saw themselves as having an "undesirable difference" and so anticipated being treated differently. Felt stigma was associated with increased risk of psychological difficulties and impaired quality of life. Felt stigma was linked to higher seizure frequency, recency of seizures, younger age at epilepsy onset or longer duration, lower educational level, poorer knowledge about epilepsy, and younger age. An important finding was the potential contribution of epilepsy terminology to the production of stigma. Negative attitudes toward those with epilepsy were described in 100% of included studies, and originated in any population group (students, teachers, healthcare professionals, general public, and those living with epilepsy). Better attitudes were generally noted in those of younger age or higher educational status. SIGNIFICANCE: Whatever the specific beliefs about epilepsy, implications for felt and enacted stigma show considerable commonality worldwide. Although some studies show improvement in attitudes toward those living with epilepsy over time, much work remains to be done to improve attitudes and understand the true occurrence of discrimination against persons with epilepsy.
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Epilepsia , Qualidade de Vida , Epilepsia/epidemiologia , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Convulsões , Estigma Social , Inquéritos e QuestionáriosRESUMO
PURPOSE: This study assessed the strengths of association among perceived stress, felt stigma, and depression in adults with epilepsy, and evaluated whether felt stigma altered the association between perceived stress and depression. METHODS: This multicenter, cross-sectional study included adults with epilepsy. Depression was assessed using the Beck Depression Inventory (BDI), and perceived stress was evaluated using the 10-item Perceived Stress Scale. Felt stigma was determined using the three-item Stigma Scale for Epilepsy, with individuals categorized as positive for felt stigma if they answered "yes" to at least one of these items. A hierarchical linear regression analysis and an analysis of covariance with interaction terms were performed. RESULTS: The 316 adults with epilepsy included 171 men and 145 women; of these, 109 (34.5%) reported felt stigma. A hierarchical linear regression analysis showed that perceived stress was the most important correlate of depressive symptoms, followed by felt stigma, being unemployed, recurrence of generalized or focal to bilateral tonic-clonic seizures, and being married. The model explained 54.0% of the variance of BDI scores. Significant interactions between felt stigma and perceived stress on BDI scores was identified in both crude and adjusted models (pâ¯<â¯0.05 each). Specifically, in an adjusted model, BDI scores were more strongly associated with perceived stress in persons with (pâ¯<â¯0.001, partial eta2â¯=â¯0.225) than without (pâ¯<â¯0.001, partial eta2â¯=â¯0.205) felt stigma. CONCLUSIONS: Perceived stress was the most significant correlate of depressive symptoms in adults with epilepsy, followed by felt stigma. The interaction between perceived stress and felt stigma on depressive symptoms was significant. These findings may help in developing cognitive behavioral therapy for stigma and stress management in persons with epilepsy.
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Depressão , Epilepsia , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Qualidade de Vida , Estigma Social , Estresse PsicológicoRESUMO
Epilepsy is one of the most common neurological diseases, but it can sometimes be under-reported or have a time delay in diagnosis. This data is not surprising if we consider that a person often seeks medical attention only after presenting a generalized tonic-clonic seizure. Epilepsy diagnostic delay is caused by several factors: under-reporting by patients, under-diagnosed epileptic manifestations by inexperienced clinicians, and lack of time in the emergency setting. The consequences of this delay are increased accidents, a high rate of premature mortality, and economic expanses for the healthcare system. Moreover, people with epilepsy have a higher probability of comorbidities than the general population, such as mood disorders or cognitive problems. Along with recurrent seizures, these comorbid diseases promote isolation and stigmatization of people with epilepsy, who suffer from discrimination at school, in the workplace, and even in social relationships. Public awareness of epilepsy and its comorbidities is necessary to prevent diagnostic delays and overcome social and professional iniquities for people with epilepsy.
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Epilepsia Generalizada , Epilepsia , Humanos , Diagnóstico Tardio , Epilepsia/diagnóstico , Convulsões/diagnóstico , PercepçãoRESUMO
PURPOSE: The present study evaluated whether patients with epilepsy with dual conditions of felt stigma and depressive symptoms are more strongly associated with social anxiety, being unmarried, and being unemployed than those with depressive symptoms or felt stigma alone. METHODS: This multicenter, cross-sectional study evaluated subjects using the Stigma Scale-Revised, the Patient Health Questionnaire-9, and the six-item versions of the Social Interaction Anxiety Scale, and the companion Social Phobia Scale. Subjects were grouped by depressive symptoms and felt stigma into four groups. Multivariate logistic regression analyses were performed. RESULTS: The 298 subjects included 173 men and 125 women. Of these subjects, 35 (11.7%) had depressive symptoms alone, 33 (11.1%) had stigma alone, and 27 (9.1%) had both depressive symptoms and felt stigma. Multivariate logistic regression analyses showed that, compared with the control group having neither depressive symptoms nor felt stigma, the odds ratios (ORs) for social interaction anxiety and social phobia were highest in the group of dual conditions (OR 18.7 and 13.5, respectively), followed by the depression-alone (OR 7.7 and 4.6, respectively) and stigma-alone (OR 5.0 and 2.8, respectively) groups. Similarly, the ORs for being unmarried (OR 29.2) and unemployed (OR 3.1) were significant only in the group of dual conditions. In addition, male sex and younger age were independently associated with being unmarried whereas seizures recurring ≥1 per month were independently associated with being unemployed. CONCLUSIONS: Dual conditions of felt stigma and depressive symptoms may be more strongly associated with social anxiety, being unmarried, and being unemployed than depressive symptoms or felt stigma alone in patients with epilepsy.
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Depressão , Epilepsia , Ansiedade , Estudos Transversais , Emprego , Feminino , Humanos , Masculino , Casamento , Estigma Social , Inquéritos e QuestionáriosRESUMO
PURPOSE: This study assessed whether seizure severity and social anxiety were related to self-disclosure or concealment behaviors independent of felt stigma in Korean adults with epilepsy. METHODS: This multicenter, cross-sectional study used the Disclosure Management Scale (DMS), the short forms of the Social Phobia Scale (SPS-6) and Social Interaction Anxiety Scale (SIAS-6), and the Stigma Scale-Revised to evaluate Korean adults with epilepsy. Seizure severity was measured as a composite variable, and multivariate linear regression analyses were performed to assess whether seizure severity and social anxiety were related to concealment behaviors. RESULTS: The 315 subjects included 132 (41.9%) women and 183 (58.1%) men. Of these subjects, 212 (67.3%) reported rarely or never talking to others about their epilepsy, whereas only 98 (31.1%) stated that they rarely or never kept their epilepsy secret from others. Linear regression analyses showed that concealment behaviors were positively correlated with degree of social anxiety (on separate models using the SIAS-6 and SPS-6) and felt stigma, and negatively associated with level of seizure severity. Both models accounted for about 14% of the variance in DMS scores. CONCLUSIONS: The majority of Korean adults with epilepsy choose concealment and selective disclosure strategies. Social anxiety and seizure severity along with felt stigma play significant roles in deciding whether to disclose or conceal a diagnosis of epilepsy. The explanatory power of these models was weak.
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Epilepsia , Estigma Social , Adulto , Ansiedade/etiologia , Estudos Transversais , Epilepsia/diagnóstico , Feminino , Humanos , Masculino , República da Coreia/epidemiologia , Convulsões , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Self-stigma is considered to have immensely negative influences on the living and psychological states in patients with epilepsy. Understanding the stigma experienced by patients with epilepsy is essential considering its negative impact on their treatment and quality of life (QOL). However, few sufficiently validated self-report instruments are available to evaluate self-stigma in patients with epilepsy. The Epilepsy Stigma Scale (ESS) is one of the most commonly used self-reported questionnaires available to evaluate self-stigma in patients with epilepsy. The present study translated the ESS into Japanese to validate the Japanese version of the ESS (ESS-J) in Japanese adults with epilepsy. METHODS: The study included 338 patients with epilepsy (166 men, aged 18-75 years) who underwent comprehensive assessment including long-term video-electroencephalography monitoring, neuroimaging studies, and neuropsychological and psychosocial assessments in the Tohoku University Hospital Epilepsy Monitoring Unit. This study consisted of two phases: (1) translation of the ESS into Japanese using the back-translation technique; and (2) statistical analysis of the ESS-J to evaluate the factor structure, reliability, and validity. RESULTS: The 2-factor model achieved acceptable fit to the data: χ2 = 161.27, df = 34, p < 0.01, comparative fit index = 0.929, root mean square error of approximation = 0.105, standardized root mean squared residual = 0.047, Akaike's information criterion = 203.27 and, Bayesian information criterion = 283.56. These two subscales were named enacted stigma and felt stigma based on the theoretical model of self-stigma. We found the ESS-J to have acceptable internal consistency as follows: enacted (7 items; α = 0.88) and felt stigma subscale (3 items; α = 0.82). The concurrent validity was confirmed by adequate correlation with other related instruments. Both enacted and felt stigma had positive and moderate correlations with depression as measured by the Neurological Disorders Depression Inventory for Epilepsy (r = 0.44, p < 0.01; r = 0.41, p < 0.01, respectively) and with anxiety as measured by the Generalized Anxiety Disorder -7 (r = 0.48, p < 0.01; r = 0.38, p < 0.01, respectively). CONCLUSION: The ESS-J demonstrated acceptable validity and reliability. The present study provided preliminary evidence about the psychometric properties of the ESS-J, indicating the reliable factorial structure, adequate internal consistency, and satisfactory construct and concurrent validity. Measurement of the two types of self-stigma may offer a useful tool for clinical interpretation of patients' psychological state throughout epilepsy care, and as one of the patient-reported outcomes in QOL research.
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Epilepsia , Qualidade de Vida , Adulto , Teorema de Bayes , Humanos , Japão , Masculino , Psicometria , Reprodutibilidade dos Testes , Inquéritos e QuestionáriosRESUMO
PURPOSE: We investigated felt stigma in seizure-free persons with epilepsy with regard to associated factors and its impact on health-related quality of life (HRQoL). METHODS: This cross-sectional study included 81 patients who had been seizure free for at least 2â¯years and 52 controls who had only had one seizure in the last 2â¯years. All patients completed the Stigma Scale, Quality of Life in Epilepsy Inventory-31 (QOLIE-31), short form of the Eysenck Personality Questionnaire-Revised (EPQ-RS), Hospital Anxiety Depression Scale (HADS), Rosenberg Self-esteem Scale, and the enacted stigma questionnaire. RESULTS: The proportion of felt stigma was not significantly different between controls (25%) and patients in seizure remission (21%). A stepwise logistic regression analysis revealed that enacted stigma and higher EPQ-RS Neuroticism scores were more likely to be associated with felt stigma of patients in remission. Quality of Life in Epilepsy Inventory-31 scores were significantly higher in patients in seizure remission than in controls. In the stepwise linear regression analysis, felt stigma was not associated with the total QOILE-31 scores. Sobel tests showed that felt stigma had indirect effects on the QOLIE-31 scores through EPQ-RS Neuroticism scores, but its statistical significance was lost after controlling for the presence of enacted stigma, anxiety, and depressive symptoms. CONCLUSION: One-fifth of seizure-free patients continued to feel stigmatized, even though they had not had a seizure in more than 2â¯years. Experience of enacted stigma and a neurotic personality trait were the most important correlates of felt stigma for these patients. Health-related quality of life was significantly better in patients in remission than in patients with rare seizures. Felt stigma was not a significant or independent factor associated with worse HRQoL in patients in remission.
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Epilepsia , Qualidade de Vida , Estudos Transversais , Humanos , Convulsões , Estigma Social , Inquéritos e QuestionáriosRESUMO
PURPOSE: There have been little researches examining the role of family functioning on psychological outcomes in the field of adult epilepsy. We determined whether family functioning is correlated with felt stigma in adults with epilepsy. METHODS: In this cross-sectional study, adults with epilepsy and their caregivers were recruited. Data were collected using the Family Adaptability and Cohesion Evaluation Scale (FACES) III, the Family adaptation, partnership, growth, affection, and resolve (APGAR) questionnaire, the Stigma Scale for Epilepsy (SS-E), the modified questionnaire for episodes of discrimination, and the Beck Depression Inventory. Family functioning was measured by the caregivers. RESULTS: A total of 273 adult patients and their primary caregivers were included. Multivariate logistic analyses showed that family cohesion and excellent family functioning were negatively correlated with felt stigma after controlling for confounding variables. Enacted stigma, depressive symptoms, and university education were also significant. Interaction between enacted stigma and family cohesion on felt stigma was significant (pâ¯=â¯0.049). Family cohesion was negatively correlated with felt stigma only in the patients with enacted stigma (pâ¯=â¯0.011). CONCLUSIONS: Family functioning especially family cohesion may have protective effects against development of felt stigma in adults with epilepsy. Such protecting effects against felt stigma may be different according to enacted stigma. This understanding is helpful for developing effective psychosocial interventions to reduce felt stigma in patients with epilepsy.
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Epilepsia , Estigma Social , Adulto , Estudos Transversais , Emoções , Relações Familiares , HumanosRESUMO
The present study aimed to determine the level of felt stigma, overprotection, concealment, and concerns related to epilepsy in different life domains by using culturally-specific scales for Turkish individuals with epilepsy. Also, it aimed to detect relations among the study variables and to determine the variables which predict felt stigma. For this purpose, felt stigma scale, overprotection scale, concealment of epilepsy scale, and concerns of epilepsy scale were administered to two hundred adult persons with epilepsy (PWE). The results showed that almost half of the participants reported felt stigma, overprotection, concealment of epilepsy, concerns related to future occupation, and concerns related to social life. Almost all the study variables show correlations with each other. Concealment of epilepsy, concerns related to social life, and concerns related to future occupation were found as the predictors of felt stigma.
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Emoções , Epilepsia/epidemiologia , Epilepsia/psicologia , Estigma Social , Inquéritos e Questionários , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida/psicologia , Turquia/epidemiologia , Adulto JovemRESUMO
Stigma impacts >50% of persons with epilepsy (PWE) and is a key factory in quality of life. Stigma can be both enacted (external factors) and felt (internal factors). In this article, felt/perceived stigma is more broadly defined as a combination of internal factors and perceptions of external factors. Secondary perceived stigma is felt/perceived stigma by a third party. A key, but often underappreciated, consideration in felt/perceived stigma may occur when a seemingly innocuous statement by a speaker is perceived as stigmatizing by the PWE and/or even by an unintended third party. This autobiographic short report addresses secondary perceived stigma in a social setting, the theater.
Assuntos
Drama , Epilepsia/psicologia , Meio Social , Estigma Social , Idoso , Feminino , Humanos , Masculino , Qualidade de Vida , Convulsões/psicologia , EstereotipagemRESUMO
PURPOSE: People with Parkinson's disease (PD) may experience stigma due to their visible features of movement and communication difficulties. This paper aimed to examine the role of experienced stigma in health-related quality of life (QOL), after controlling for personal and clinical characteristics. METHODS: This is a preliminary analysis of a subset of baseline data from the Social Self-Management of Parkinson's Disease Study (SocM-PD), an ongoing 3-year prospective cohort study. Seventy-three people with PD (M age = 65.72, 29 women) participated in this study. Hierarchical multiple regression analyses were used to determine the role of stigma in QOL, after controlling for gender, disease severity, depression, and motor difficulties of daily living. RESULTS: Significant correlations were found between QOL with gender (r = .26), disease severity (r = .38), depression (r = .65), motor difficulties of daily living (r = .71), and stigma (r = .83). After controlling for the significant covariates, stigma made a significant and unique contribution to the explanation of QOL by 13.7 % (p < 0.001). A final hierarchical multiple regression with stigma and the 4 covariates revealed an overall model that explained 77.8 % of the total variance of QOL (F [5, 63] = 48.79, p < 0.001). CONCLUSIONS: Experienced stigma appears to be a key determinant of QOL in people with PD. The results suggest the importance of further understanding stigma in PD to develop possible intervention strategies. Future work is also needed to verify the results with a larger and longitudinal dataset of the SocM-PD.
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Doença de Parkinson/psicologia , Perfil de Impacto da Doença , Idoso , Estudos de Coortes , Feminino , Humanos , Masculino , Estudos ProspectivosRESUMO
BACKGROUND: Lack of a sufficient range in socioeconomic status (SES) in most prior studies of felt stigma and epilepsy has hampered the ability to better understand this association. METHODS: We assessed the burden and associates of felt stigma in 238 individuals with prevalent epilepsy aged 18 and older, comparing low SES with high SES. RESULTS: Reported levels of stigma were higher in low SES than in high SES (p<0.0001), and all psychosocial variables were associated with stigma, including depression severity (p<0.0001), knowledge of epilepsy (p=0.006), quality of life (p<0.0001), social support (p<0.0001), and self-efficacy (p=0.0009). Stigma was statistically significantly associated with quality of life in the low SES group and with depression severity and social support in the high SES group. CONCLUSIONS: Low SES alone did not account for felt stigma; rather, we found that quality of life, depressive symptoms, and social support have the greatest impact on reported felt stigma in individuals with prevalent epilepsy.
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Epilepsia/psicologia , Estigma Social , Adolescente , Adulto , Depressão/etiologia , Depressão/psicologia , Epilepsia/complicações , Feminino , Humanos , Cobertura do Seguro , Masculino , Estado Civil , Pessoa de Meia-Idade , Qualidade de Vida , Autoeficácia , Meio Social , Apoio Social , Fatores Socioeconômicos , Adulto JovemRESUMO
OBJECTIVES: Sleep difficulties are associated with many physical and mental health problems, such as diabetes, hypertension, and depressive symptoms. Sleep can be affected by stressors such as discrimination and stigma, which are disproportionately experienced by sexual and gender minority (SGM) individuals. This research assesses how different characteristics, including discrimination and stigma, sociodemographic characteristics, community connectedness, self-rated good health, and outness levels, influence a sleep disorder diagnosis among SGMs. METHODS: We analyzed data from wave 3 of Generations: A Study of the Life and Health of LGB People in a Changing Society. We used bivariate analysis to document the distribution of key variables across SGM status. Next, we conducted logistic regression analyses to measure how each variable influences the likelihood of an SGM individual being diagnosed with a sleep disorder considering experiences of discrimination and stigma. RESULTS: We found that feeling stigma was statistically significant in predicting a sleep disorder diagnosis among SGM individuals. However, after controlling for sociodemographic characteristics, community connectedness, self-rated good health, and outness levels, SGM individuals only had increased odds of a sleep disorder diagnosis if they reported higher scores on the Internalized Homophobia Scale. CONCLUSIONS: Variation in having a sleep disorder diagnosis differs based on SGM status and could not be explained away with the inclusion of all covariates. Our findings support the need for more research to compare health outcomes between different sexual and gender identities, rather than comparing them with their nonminority counterparts.
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Minorias Sexuais e de Gênero , Transtornos do Sono-Vigília , Humanos , Estigma Social , Comportamento Sexual/psicologia , SonoRESUMO
BACKGROUND: People with stigmatizing conditions associated with epilepsy encounter many difficulties in their daily lives and are more likely to have low self-esteem, low levels of hope, internalize negative attitudes, decrease adherence to treatment, and experience unemployment. The purpose of this study was to quantify the extent of perceived stigma and self-stigma among people with epilepsy. METHODOLOGY: This systematic review and meta-analysis followed the Preferred Reporting Item Review and Meta-analysis (PRISMA) guideline. PubMed, PsycINFO, Web of Science, Cochrane Library, Google Scholar, and HINARI were major search databases. The included literature reports the prevalence of perceived stigma and self-stigma among people with epilepsy in East Africa. The quality of each study was evaluated using the Newcastle-Ottawa Quality Assessment Scale (NOS). Data were extracted using a Microsoft Excel spreadsheet, and data analysis was performed using STATA version 11. The pooled prevalence of perceived stigma and self-stigma was determined using a random effect model. Heterogeneity between studies was checked using the I2 statistical test. Publication bias was checked using Egger's statistical test and funnel plot. RESULTS: The pooled prevalence of perceived stigma and self-stigma in people with epilepsy was 43.9 % with a 95 % CI (29.2, 58.7) and 41.2 % with a 95 % CI (12.1, 70.3), respectively. Based on the country, sub-group analysis revealed that the prevalence of perceived stigma among people with epilepsy shows a notable difference between the countries. In Ethiopia, the prevalence was 51.8 % with a 95 % CI of 29.8 to 73.8; in Uganda, 39.4 % with a 95 % CI of 27.1 to 51.3; in Tanzania, 27.4 % with a 95 % CI of 27.9 to 36.9; and in Kenya, 33.2 % with a 95 % CI of 28.2 to 38.2. CONCLUSION: Roughly 30 % of people with epilepsy experience self-stigma, while approximately 44 % of people with epilepsy experience perceived stigma. As a result, the relevant authorities ought to focus on reducing the prevalence of stigma among people who have epilepsy.
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Epilepsia , Autoimagem , Estigma Social , Humanos , Epilepsia/psicologia , Epilepsia/epidemiologia , África Oriental/epidemiologiaRESUMO
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.
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Epilepsia , Adulto , Feminino , Humanos , Adolescente , Criança , Estigma Social , Emoções , Projetos de PesquisaRESUMO
PURPOSE: Felt stigma and social anxiety are both common in patients with epilepsy (PWE) and they share an important relationship. Here in the present study, we investigated how social anxiety and different concepts of felt stigma relate to each other in PWE in order to provide some suggestions for the prevention and intervention of social anxiety and felt stigma in PWE. METHODS: A total of 189 patients with epilepsy were enrolled in our study. Social anxiety was evaluated with the Liebowitz social anxiety scale. Felt stigma was evaluated with the Kilifi stigma scale for epilepsy. The data were subjected to network analysis. RESULTS: The findings indicated that eight edges with the strongest regularized partial correlations existed in the network, such as the edge between S3 "Embarrassed" and S4 "Disappointed", and the edge between S14 "Discriminate" and S15 "Outcast". In addition, S10 "Inferior" and S11 "Avoid" had the highest strength and predictability. The flow network of social anxiety indicated that most concepts of felt stigma were directly connected with social anxiety. The strongest edge existed between S8 "Uncomfortable" and social anxiety, while S6 "Society" and S5 "Rewarding life" were also closely connected with social anxiety. CONCLUSION: The current study highlighted the critical central concept S10 "Inferior" and critical concepts associated with social anxiety, including S8 "Uncomfortable", S6 "Society" and S5 "Rewarding life". The findings revealed in this study may offer some help in the clinical prevention and intervention of felt stigma and social anxiety in PWE. However, all of the conclusions above need further confirmatory studies to validate them.
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Epilepsia , Qualidade de Vida , Ansiedade , Emoções , Humanos , Estigma Social , Inquéritos e QuestionáriosRESUMO
Purpose: We assessed how psychological distress and felt stigma (perceived sexual minority stigma in one's community) are associated with key HIV prevention outcomes in a U.S. national probability sample of sexually active, HIV-negative sexual minority men. Methods: Using data from the Generations study (2017-2018, N = 285), the present study assessed the effects of psychological distress and felt stigma and their interaction on three HIV prevention outcomes: testing for HIV as per Centers for Disease Control and Prevention guidelines (once or more in the past year), use of latex barriers (e.g., condoms), and familiarity with pre-exposure prophylaxis (PrEP). Results: In main effects models, neither psychological distress nor felt stigma was associated with any of the screening and prevention outcomes. However, the interaction between psychological distress and felt stigma was associated with each outcome. Specifically, at higher levels of felt stigma, greater psychological distress was associated with lower odds of HIV testing (exponentiated coefficient = 0.93, confidence interval [95% CI] 0.87-1.00), use of latex barriers (exponentiated coefficient = 0.92, 95% CI 0.86-0.99), and familiarity with PrEP (exponentiated coefficient = 0.90, 95% CI 0.82-0.98). Conclusion: These findings highlight the importance of felt stigma in shaping the association between psychological distress and engagement in HIV screening and prevention and offer important considerations for future HIV prevention research and interventions.
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Infecções por HIV/prevenção & controle , Comportamentos Relacionados com a Saúde , Conhecimentos, Atitudes e Prática em Saúde , Homossexualidade Masculina/psicologia , Angústia Psicológica , Minorias Sexuais e de Gênero/psicologia , Estigma Social , Adulto , Fármacos Anti-HIV/uso terapêutico , Preservativos , HIV , Infecções por HIV/diagnóstico , Teste de HIV , Humanos , Masculino , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde , Profilaxia Pré-Exposição , Sexo Seguro , Estudos de Amostragem , Parceiros Sexuais , Estresse Psicológico , Estados Unidos , Adulto JovemRESUMO
OBJECTIVE: Felt stigma is quite common among patients with epilepsy, but can be difficult for patients to express under clinical situations. The objective of this network study is to show that felt stigma can be deconstructed into a network of different concepts and to construct a map of their interconnections. METHODS: Two hundred and ten patients with epilepsy were enrolled in our study. Stigma were assessed by Kilifi stigma scale for epilepsy containing 15 items about perceived stigma in patients with epilepsy. Network analysis were used as statistical analysis. We calculated node strength. RESULTS: Participants' average age was 31.18 years; 46.2 % of these patients were women and 50.5 % of them received education in university. The findings indicated that six edges with strongest regularized partial correlations existed in the network. Two concepts with the highest strength were S10"Inferior" and S14"Discriminate", while the concepts with the lowest strength were S3 "Embarrassed" and S13 "Mistreated". CONCLUSION: This network study offers an overview of the richness and complexity of associations involved in the structure of felt stigma in individuals with epilepsy. "Inferior" and "Discriminate" were the most central concepts of felt stigma in patients with epilepsy and the whole system of felt stigma tend to be a self-determined system. This map of concepts and their interrelations revealed in the map may offer some help for the guidance of clinicians and policy makers to reduce felt stigma in patients with epilepsy. However, as this study is based on cross-sectional data and using exploratory statistical tools like network analysis, all the conclusion above needed further confirmatory studies to validate them.
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Epilepsia , Estigma Social , Adulto , Estudos Transversais , Escolaridade , Emoções , Feminino , Humanos , Inquéritos e QuestionáriosRESUMO
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.
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Pessoas com Deficiência/psicologia , Epilepsia/psicologia , Relações Familiares/psicologia , Interação Social , Estigma Social , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria , Fatores Socioeconômicos , Adulto JovemRESUMO
PURPOSE: We determined whether self-efficacy in seizure management differentially correlated with health-related quality of life (HRQoL) in persons with epilepsy depending on seizure recurrence and felt stigma. METHODS: This cross-sectional study was conducted in 312 adults with epilepsy. To determine which risk factors affected the benefits of self-efficacy for HRQoL, an analysis of covariance with an interaction term was used. The Quality of Life in Epilepsy Inventory-10 (QOLIE-10), the Epilepsy Self-Efficacy Scale (ESES), the Stigma Scale for Epilepsy (SS-E), and the Hospital Anxiety and Depression Scale (HADS) were assessed. RESULTS: QOLIE-10 scores positively correlated with ESES score and employed status, but negatively correlated with HADS scores, SS-E score ≥1, seizure frequency, and antiepileptic drug (AED) polytherapy. There were significant interaction effects between ESES score and 2-year seizure status (p = 0.025) or SS-E score ≥ 1 (p = 0.009) on QOLIE-10 scores. Self-efficacy in epilepsy management correlated with QOLIE-10 scores only in subjects that had experienced uncontrolled seizures (B = 0.090, p = 0.003) or refractory seizures (B = 0.158, p = 0.020) and in subjects with felt stigma (SS-E ≥ 1) (B = 0.183, p < 0.001). Contrastingly, generalized tonic-clonic seizure recurrence (p = 0.420), AED polytherapy (p = 0.667), depressive symptoms (p = 0.663), and anxiety (p = 0.503) did not interact with self-efficacy. CONCLUSIONS: The relationship between epilepsy self-efficacy and overall HRQoL may differ depending on seizure recurrence and felt stigma. Our findings would be helpful for designing psychosocial interventions to improve HRQoL in persons with epilepsy.