Are “Theory of Mind” Skills in People with Epilepsy Related to How Stigmatised They Feel? An Exploratory Study

Abstract

Feelings of stigma are one of the main burdens reported by people with epilepsy (PWE). Adults with temporal or frontal lobe epilepsy and children with idiopathic generalised epilepsy are at risk of Theory of Mind (ToM) deficits. ToM refers to social cognitive skills, including the ability to understand the thoughts, intentions, beliefs, and emotions of others. It has been proffered that ToM deficits may contribute to the feelings of stigma experienced by PWE. In this study we tested this for the first time. We also determined the association between clinical and demographic factors and ToM performance. Five hundred and three PWE were recruited via epilepsy organisations and completed measures online. Feelings of stigma were measured using Jacoby's Stigma Scale, whilst the Reading the Mind in the Eyes Test and the Faux Pas Test measured ToM. The median age of participants was 37 years, their median years living with epilepsy were 15, and 70% had experienced seizures in the prior 12 months. Feelings of stigma held a negligible, negative, and nonsignificant association with ToM performance (r s −0.02 and −0.05). Our results indicate that the ToM model for understanding epilepsy stigma has limited utility and alternative approaches to understanding and addressing epilepsy-related stigma are required.

Correlates of stigma in adults with epilepsy: A systematic review of quantitative studies

“…Furthermore, social support was found to significantly predict lower stigma even when other sociodemographic variables had been taken into account in regression analyses [36]. To ascertain whether participants' social cognitive skills and their ability to understand the thoughts, intentions, beliefs, and emotions of others contributed to feelings of stigma, Noble, Robinson, and Marson compared "theory of mind" and stigma measures using regression analyses [50]; these were found to share little variance, regardless of participant seizure status, indicating that the model has little utility in understanding epilepsy stigma.…”

A disease, disorder, illness or condition: How to label epilepsy?

“…It was designed to address wider questions regarding perceptions of stigma 9, 10. Participants were recruited by advertisements in the newsletters and websites of epilepsy interest groups and organizations within England, Scotland, Wales and the Republic of Ireland.…”

Social cognition, psychiatric comorbidities, and quality of life in adults with epilepsy

“…Only two studies have addressed the question of how social cognition specifically impacts on social functioning in patients with epilepsy [25,26]. The first study [25] investigated 67 patients with TLE and 30 healthy controls.…”

“…Although both FPT and GSI scores had significant and independent predictive effects on SOFSE subscales, only FPR predicted all six sub-scale scores. The authors of this study, therefore, concluded that social cognition A second study of over 500 epilepsy patients, tested the hypothesis that social stigma reported by patients with epilepsy is caused by ToM deficits [26]. Data was acquired remotely using online questionnaires.…”