Examining the role of shame in seizure disorders
Research type
Research Study
Full title
Examining the role of shame in seizure disorders
IRAS ID
319791
Contact name
Eva Popoluska
Contact email
Sponsor organisation
Sheffield Teaching Hospitals NHS Foundation Trust
Clinicaltrials.gov Identifier
175494, Project Number at The University of Sheffield
Duration of Study in the UK
0 years, 6 months, 22 days
Research summary
Research Summary:
Shame is an emotion that has been shown to be capable of contributing to mental health difficulties. People with epileptic and functional seizures can experience stigma, and this may be associated with elevated levels of shame. In this study, we intend to explore how people with seizures cope with shame and how shame may impact their mental health and seizures. We are also interested in comparing how experiences of shame may be similar or different in people with epileptic or functional seizures (also known as dissociative seizures, nonepileptic attack disorder, and psychogenic non-epileptic seizures). This study should help us to understand people with seizures better and to inform psychotherapeutic interventions for people living with seizures. For the study, adult participants will be recruited from hospital sites and relevant charities. The study will involve an online self-report questionnaire that will take approximately 60 minutes to complete.Lay summary of study results:
In our study we explored how feelings of shame may contribute to both functional seizures (also known as psychogenic non-epileptic seizures, or PNES) and epileptic seizures. These two types of seizures can present with similar symptoms but have distinct underlying causes. Epileptic seizures are linked to abnormal neurological events in the brain, whilst functional seizures are linked to involuntary psychological and emotional factors. Despite their differences, shame, a powerful and often debilitating emotion, may play a role in both conditions. Therefore, this study examined levels of shame aversion & shame proneness and their relationship with various mental health difficulties (MHDs), and seizure frequency & severity in people with functional seizures (PWFS) and epilepsy (PWE). The study involved 68 individuals with functional seizures (PWFS) and 70 individuals with epilepsy (PWE), who were recruited from a neurology clinic and relevant support charities. Participants were asked to complete an online survey that measured levels of shame, mental health difficulties (such as depression, anxiety, and somatic symptoms), and seizure characteristics. The researchers found that both individuals with functional and epileptic seizures had higher levels of shame compared to the general population, and there was no difference in the level of shame between groups. Both groups also reported clinically high levels of depression and somatic symptoms (physical symptoms related to psychological distress), although people with functional seizures participants experienced more severe symptoms than people with epilepsy. One key finding from the study was that shame aversion—the fear or discomfort of feeling shame—was linked to higher levels of anxiety and depression in both groups. This relationship remained even when factors like age, gender, and socioeconomic status were taken into account. The study also revealed that participants’ perception of a lower socioeconomic status (PSS) played a significant role in predicting depression, anxiety, somatic symptoms, and the frequency of seizures, highlighting how social nd financial factors can impact mental health and seizure outcomes. However, the study did not find a direct link between shame and the frequency and severity of seizures. The study’s results underscore the importance of addressing emotional factors, such as shame, in the treatment of seizure disorders. As both people with functional and epileptic seizures showed similar levels of shame, despite their different seizure causes, the study suggests that shame is a shared emotional experience for many people with seizures, regardless of the type. The study also highlighted how then shame can contribute to mental health difficulties.
In conclusion, the study suggests effective treatment should address not only the physiological aspects of the condition but also the social, emotional and psychological factors, including shame. Psychological interventions should be considered for individuals with seizures. Furthermore, there is a need to create more supportive environments in broader social contexts that could help reduce social stigma and mitigate the negative impact of shame.REC name
Yorkshire & The Humber - South Yorkshire Research Ethics Committee
REC reference
22/YH/0213
Date of REC Opinion
1 Dec 2022
REC opinion
Further Information Favourable Opinion