An evaluation of the psychosocial impact of epilepsy on marriage in the United Kingdom

Deli, Alceste; Kinariwalla, Neha; Calvello, Carmen; Capelli, Valentina; Neale, Marcus; Henderson, Russett; Tristram, Maggie; Sen, Arjune

doi:10.1016/j.yebeh.2019.03.012

Cited by 6 publications

(3 citation statements)

References 14 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…It seems that marriage might help chronically ill persons to cope more effectively with the disease, retaining better psychological and physical health (Kiecolt-Glaser, 2001). At the same time, PWE of both genders with seizure onset within matrimony demonstrated higher levels of anxiety and perceived stigma versus those diagnosed with epilepsy prior to marriage (Deli et al, 2019).…”

Section: Marriagementioning

confidence: 99%

How to understand and address the cultural aspects and consequences of diagnosis of epilepsy, including stigma

Braga¹,

Hosny²,

Kakooza‐Mwesige³

et al. 2020

Epileptic Disorders

View full text Add to dashboard Cite

Epilepsy is one of the most prevalent serious neurological diseases. It is unique, being the only severe and disabling neurological disease that is fully treatable in the majority of cases, but on the other hand, associated with stigma, prejudice and discriminatory practices, which negatively impact people's everyday life in important areas, such as access to education, employment, marriage and social integration. For centuries, people with epilepsy (PWE) were stigmatized in all societies, with the consequences of prejudice and discrimination adding to the medical burden of the disease. Myths and misconceptions about this disease still occur, mostly in low-resources settings, however, in many industrialized countries, the knowledge regarding epilepsy is still limited in the population. The stigma is perceived as a negative attribute that is undesirable for the community to which the individual belongs. PWE are intrinsically undervalued, both by themselves ("felt stigma") and by the others. Actual discrimination by peers and institutions generates what is referred to as "enacted stigma". Misconceptions, stigma and negative attitudes towards PWE dramatically decrease quality of life, affecting the most sensitive areas, such as marriage, employment and driving. The Resolution 68.28 of the World Health Assembly (2015), the WHO-ILAE-IBE Global Report "Epilepsy: a public health imperative", advocates for strengthening and implementing national policies and legislation to promote and protect the rights of PWE, reducing misconceptions about epilepsy and improving access to care. Consolidated efforts are required from different organizations, public health managers, healthcare providers, PWE and their families to work together to improve socialization and quality of life of PWE. Educational programs and awareness to support activities among the general population, health service providers and PWE are the best way to reduce all types of stigma and discrimination.

show abstract

Section: Marriagementioning

confidence: 99%

How to understand and address the cultural aspects and consequences of diagnosis of epilepsy, including stigma

Braga¹,

Hosny²,

Kakooza‐Mwesige³

et al. 2020

Epileptic Disorders

View full text Add to dashboard Cite

show abstract

“…Withdrawal from AEDs is an obvious means to avoid the adverse influences of taking AEDs, but approximately 34% of PWE treated only with medication will have seizure recurrence after the withdrawal of AEDs . Therefore, the dilemma between the risk of seizure recurrence after AED withdrawal and the adverse influences of overtreatment with AEDs is the main issue for clinicians, especially for adult patients, because the recurrence of seizures in adult PWE causes more serious social consequences, such as motor vehicle accidents, unemployment, and marital problems …”

Section: Introductionmentioning

confidence: 99%

External validation and comparison of two prediction models for seizure recurrence after the withdrawal of antiepileptic drugs in adult patients

Lin

Ding

et al. 2019

Epilepsia

View full text Add to dashboard Cite

Objective:The models currently available for predicting the risk of seizure recurrence after antiepileptic drug (AED) withdrawal in adult epilepsy patients include the prediction model developed by Lamberink et al (Lamberink model, 2017) and the Medical Research Council prediction model (MRC model, 1993). However, there was no external validation for the two models. The purpose of this study was to perform an independent external validation and a comparison of the Lamberink model and the MRC model in adult patients. Methods: The study population was recruited from the Wenzhou Epilepsy Follow-up Registry Database (WEFURD). All the predictors of the Lamberink and MRC models and the occurrence of seizure recurrence in the participants were collected based on the WEFURD. Participants' predicted probabilities of seizure recurrence were obtained by a Web-based tool and the prognostic index formula. The external validation of the Lamberink model and the MRC model were quantified by discrimination, calibration, and decision curve analysis (DCA). Results: Of 212 patients, 126 (59.4%) had seizure recurrence after AED withdrawal. The Lamberink 2-year model, the Lamberink 5-year model, the MRC 1-year model, and the MRC 2-year model had areas under the curve of 0.71 (95% confidence interval [CI] = 0.64-0.78), 0.68 (95% CI = 0.60-0.76), 0.60 (95% CI = 0.50-0.69), and 0.58 (95% CI = 0.50-0.66), respectively. Additionally, the Lamberink 2-year model had a significantly better integrated discrimination improvement than the MRC 2-year model (P < .001). Regarding calibration, the Lamberink 2-year model (P = .121) and the MRC 1-year model (P = .264) were well calibrated, but the Lamberink 5-year model (P = .022) and the MRC 2-year model (P = .008) were not. In the DCA, the Lamberink 2-year model performed well at threshold probabilities of 30%-65%. Significance: This external validation shows that the Lamberink 2-year model might be more accurate and has greater clinical benefit than others for guiding drug withdrawal in adult epilepsy clinics. 116 | LIN et aL. K E Y W O R D S adult epilepsy, drug withdrawal, external validation, prediction model, seizure recurrence Key Points • The Lamberink 2-year model had the highest AUC (0.71) among the models in the external validation • The Lamberink 2-year model (P = .121) and the MRC 1-year model (P = .264) were well calibrated, but the other prediction models were not • In the DCA, the Lamberink 2-year model performed well at threshold probabilities of 30%-65%

show abstract

“…It is noteworthy that these societal attitudes align with the experiences shared by epilepsy patients themselves. Patients often report encountering various difficulties related to their condition in areas such as marriage, education, employment, and social interactions [27][28][29].…”

Section: Epilepsy and Stigmamentioning

confidence: 99%

Stigma and psychosocial problems in patients with epilepsy

Yeni

2023

Explor Neurosci

View full text Add to dashboard Cite

Epilepsy, a prevalent neurological disorder, is characterized by chronic seizures resulting from abnormal electrical activity in the brain. Adequate medical treatment allows roughly 70% of patients to enjoy a seizure-free life. However, throughout history, epilepsy has acquired diverse interpretations due to the experienced seizures, transforming the condition from a clinical issue into a social stigma. Therefore, the aim of this review study is to review stigma and psychosocial problems in patients with epilepsy (PwE). For this reason, this study utilises sources from the last ten years and reports current data. As a result of the review, it was found that societal discrimination in PwE arises primarily from inadequate knowledge, misconceptions, and negative attitudes toward the condition. Other contributing factors were include patients’ lower levels of education and income, frequent seizures due to inadequate treatment, age at onset, duration of the disease, depressive symptoms, and lack of social support. Also, it was found that the stigma individuals with epilepsy face plays a pivotal role in exacerbating their psychosocial problems. Unfortunately, stigma and psychosocial challenges appear to be in a vicious circle, with an increase in one increasing the other. Stigmatized patients tended to isolate themselves from society, further increasing their likelihood of experiencing a depressive mood or psychiatric comorbidity. Consequently, individuals with epilepsy encounter difficulties in various domains such as marriage, work, education, and personal life. Considering these significant psychosocial burdens, it is essential to recognize that epilepsy surpasses its medical implications. Unfortunately, current efforts to reduce stigma remain insufficient, necessitating urgent and comprehensive measures to address this issue.

show abstract

An evaluation of the psychosocial impact of epilepsy on marriage in the United Kingdom

Cited by 6 publications

References 14 publications

How to understand and address the cultural aspects and consequences of diagnosis of epilepsy, including stigma

How to understand and address the cultural aspects and consequences of diagnosis of epilepsy, including stigma

External validation and comparison of two prediction models for seizure recurrence after the withdrawal of antiepileptic drugs in adult patients

Stigma and psychosocial problems in patients with epilepsy

Contact Info

Product

Resources

About