29-06-2015 | New research focusses on experiences of stigma in epilepsy

A new research study from the US has looked at a certain traits which might create increased feeling of stigmatisation as reported by people with epilepsy. In the study 182 people attending an epilepsy centre in Florida responded to a survey which used the Epilepsy Stigma Scale to measure levels of stigma reported. The purpose of the study was to identify if there are specific demographic, clinical and psychosocial traits that are linked with higher levels of stigma among people with epilepsy.

Felt, or perceived, stigma is stigma which is an internalised view that a person has of being devalued or "not as good as". It may be related to concerns about being labelled or treated differently by others, or of encountering differential treatment on account of the stigma. Shame can also be a component of felt or perceived stigma.

On analysis higher levels of felt or perceived stigma was associated with age, marital status, race, driving status, work status, seizures quality of life scores and health literacy. The coping reactions used by people with epilepsy were looked at also and among these denial, venting and behavioural disengagement were found to be associated with higher levels of felt stigma. High levels of felt stigma were reported by people who were single as well as those who had greater difficulties with understanding written health information. Increased levels of perceived stigma levels were further shown to be linked with poorer quality of life. Overall the researchers found that those people with higher levels of felt stigma were likely to use disengagement as a coping technique.

The profile of a person with epilepsy with increased perceived stigma that emerges from the study is described by the authors Bautista, Shapovalov, and Shoraka as compelling. To address the issues identified in in the study the authors recommend specific programmes which increase the level of social support, health literacy and which improve quality of life may decrease the level of felt stigma among people with epilepsy. They stated also that the findings underline the need for people with epilepsy to access social support and support for their emotional wellbeing in addition to their medical management. 


Bautista, R.E., Shapovalov,, D and Shoraka, A.R. (2015) Seizure. (In press) Available online at