Epilepsy-associated stigma from the perspective of people with epilepsy and the community in Italy

Tombini, Mario; Assenza, Giovanni; Quintiliani, Livia; Ricci, Lorenzo; Lanzone, Jacopo; Mojà, Roberta De; Ulivi, Martina; Lazzaro, Vincenzo Di

doi:10.1016/j.yebeh.2019.06.026

Cited by 41 publications

(21 citation statements)

References 40 publications

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“…Our hypothesis is that while PwoE tend to react to isolation as expected with anxiety, PwE already feel as they live in a condition of relative stigma and isolation (14) and thus tend to give a more negative interpretation to the lock down, developing feelings in the depression sphere (15,16).…”

Section: Discussionmentioning

confidence: 91%

Glimpsing the Impact of COVID19 Lock-Down on People With Epilepsy: A Text Mining Approach

Lanzone

Cenci²,

Tombini

et al. 2020

Front. Neurol.

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Objectives: To describe how the recent lock-down, related to SARS-COV-II outbreak in Italy, affected People With Epilepsy (PwE), we designed a survey focused on subjective reactions. Using Natural Language Processing (NLP), we analyzed words PwE and People without Epilepsy (PwoE) chose to express their reactions. Methods: As a subset of a larger survey, we collected from both PwE (427) and PwoE (452) single words (one per subject) associated to the period of lock down. The survey was spread thanks to the efforts of Italian league against epilepsy Foundation during the days of maximum raise of the pandemic. Data were analyzed via bag of word and sentiment analysis techniques in R. Results: PwoE and PwE showed significantly different distribution in word choice (X 2 , p = 4.904e−13). A subset of subject used positive words to describe this period, subjects with positive feelings about the lock down were more represented in the PwE group (X 2 , p = 0.045). Conclusion: PwoE developed reactive stress response to the restrictions enacted during lock-down. PwE, instead, chose words expressing sadness and concern with their disease. PwE appear to internalize more the trauma of lock down. Interestingly PwE also expressed positive feelings about this period of isolation more frequently than PwoE. Our study gives interesting insights on how People with Epilepsy react to traumatic events, using methods that evidence features that do not emerge with psychometric scales.

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Section: Discussionmentioning

confidence: 91%

Glimpsing the Impact of COVID19 Lock-Down on People With Epilepsy: A Text Mining Approach

Lanzone

Cenci²,

Tombini

et al. 2020

Front. Neurol.

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“…In particular, PwE had a lower educational level, were less occupied, and less likely to be married/cohabiting than PwoE. These are factors depending either on epilepsy itself (unpredictability of seizures, impairment of consciousness during seizures, cognitive, and motor disability, behavioral problems) and its consequences (e.g., driving limitations) or on epilepsy-related stigma (24).…”

Section: Differences Between Pwe and Pwoementioning

confidence: 99%

Epilepsy Care in the Time of COVID-19 Pandemic in Italy: Risk Factors for Seizure Worsening

et al. 2020

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In early 2020, Italy struggled with an unprecedented health emergency related to the COVID-19 pandemic. Medical care of chronic neurological diseases, such as epilepsy, is being sorely neglected. In this national survey, we aimed at understanding the impact of COVID-19 lockdown on the care of people with epilepsy (PwE) and identifying PwE risk factors for seizure worsening to direct telemedicine efforts. Methods: We administered a 48-items online survey (published on April 11, 2020) including socio-demographic, epilepsy-related, and psychometric variables (BDI-II for depression, GAD-7 for anxiety, and PSQI for sleep) to PwE and people without epilepsy (PwoE). Regression analysis identified predictors of seizure worsening. Results: We collected responses from 456 PwE (344 females) and 472 PwoE (347 females). Outpatient examinations of PwE were postponed in 95% of cases. One-third of PwE complained of issues with epilepsy management, but only 71% of them reached the treating physician and solved their problems. PwE had worse depressive and anxiety symptoms (higher BDI-II and GAD-7 scores; p < 0.001) than PwoE. Sleep quality was equally compromised in both groups (47 and 42%). Sixty-seven PwE (18%) reported seizure worsening, which was best explained by the number of anti-seizure medications (ASM) of chronic therapy and the severity of sleep disorder. Conclusions: During the current COVID-19 pandemic, a significant percentage of PwE experienced difficulties in follow-up and a seizure number increase, in particular those chronically taking more ASMs and with poor sleep quality. This dramatic experience outlines the urgent need for validation and implementation of telemedicine services for epileptic patients in order to provide regular follow-up.

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“…52 In the same way, a study from Italy showed that feeling stigmatised correlates with depressive symptoms rather than seizure frequency. 53 A systematic review of clinical correlates of stigma in adults with epilepsy showed that stigma is associated with depression and anxiety. 54 Stigma affects not only patients but also their caregivers and has negative consequences on their mental health.…”

Section: The Double Stigma Of Epilepsy and Mental Health: A Complex Pmentioning

confidence: 99%

Double stigma in mental health: epilepsy and mental illness

Mula

Kaufman

2020

BJPsych open

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Background Epilepsy and mental illness share similar problems in terms of stigma, as a result of centuries of superstition, ignorance and misbeliefs. Stigma leads not only to discrimination and civil and human rights violations but also to poor access to healthcare and non-adherence or decreased adherence to treatment, ultimately increasing morbidity and mortality. Despite continuous efforts in fighting stigma in these conditions, there is very limited knowledge on the phenomenon of double stigma, meaning the impact of having two stigmatised conditions at the same time. Aims To discuss double stigma in mental health with special reference to epilepsy. Method Articles were identified through searches in PubMed up to 31 October 2019 using the search terms ‘epilepsy’, ‘psychiatric disorders’, ‘stigma’ and additional material was identified from the authors’ own files and from chosen bibliographies. Results Double stigma is gaining attention for other stigmatised medical conditions, such as HIV, however, the literature on epilepsy is almost non-existent and this is quite astonishing given that one in three people with epilepsy have a lifetime diagnosis of a psychiatric condition. Felt (perceived) stigma and psychiatric disorders, particularly depression, create a vicious circle in epilepsy maintaining both, as depression correlates with stigma and vice versa as well as epilepsy and depression serving as bidirectional risk factors. This phenomenon has no geographical and economic boundaries as similar data have been reported for low-income and high-income countries. Conclusions Governments and policymakers as well as health services, patients’ organisations, families and the general public need to be aware of the phenomenon of double stigma in order to develop campaigns and interventions tailored for these patients.

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Epilepsy-associated stigma from the perspective of people with epilepsy and the community in Italy

Cited by 41 publications

References 40 publications

Glimpsing the Impact of COVID19 Lock-Down on People With Epilepsy: A Text Mining Approach

Glimpsing the Impact of COVID19 Lock-Down on People With Epilepsy: A Text Mining Approach

Epilepsy Care in the Time of COVID-19 Pandemic in Italy: Risk Factors for Seizure Worsening

Double stigma in mental health: epilepsy and mental illness

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