Functional seizures (FS) – observable paroxysms of altered behaviour or movement with or without a loss of consciousness – is a serious mental illness and can have negative effects on the quality of life and functioning of people with the disorder and their families.
But a study conducted by researchers in the Department of Psychology at Stellenbosch University (SU), has found that conditions such as FS are still highly stigmatised with patients often being dismissed as malingering, faking or lying due to a lack of medical causes. The study, ‘Stigma in functional seizures: A scoping review’, was recently published in Seizure, an international journal on epilepsy.
During the month of October – which is Mental Health Awareness Month – there has been a renewed effort to reduce this kind of stigma. “We need to change our attitudes towards mental health to reduce this stigma, and this month is an opportunity to do that collectively,” says Shayni Geffen, Project Leader: Advocacy and Awareness at the South African Federation for Mental Health.
As part of their investigation, the SU researchers conducted a systematic scoping review of academic literature on FS. They found that even though the stigmatisation of FS is prevalent, it remains understudied, especially in low-income countries. “In most data sources stigma was often an afterthought, with very few sources specifically exploring this topic.
“Overall, our data suggested that stigma around FS is more prevalent and pronounced than is the case with epileptic seizures. A lack of knowledge of the disorder contributes to stigma and discriminatory practices. Stigma remains a barrier to receiving a diagnosis and accessing treatment.
“Literature suggests that it can take years for patients to finally get a diagnosis of FS, but once they receive the diagnosis, it is often met with negative stereotypes and perceptions that lead to stigmatisation and treatment resistance.”
According to the researchers, the most prominent theme emerging from their analysis is that of healthcare practitioners stigmatising people with FS.
“Patients with FS indicated that they were ‘rejected and dismissed by doctors as malingerers, time-wasters or attention-seekers’.”
“From our review it became apparent that the negative attitudes of healthcare practitioners towards patients with FS persist, often because of a lack of knowledge, general awareness, understanding and medical training with regards to this disorder.”
But it’s not just health practitioners who treat patients with FS in this way; family members, friends and acquaintances also stigmatise them.
“Patients with FS also experience stigmatisation within their own families and their broader social circles. Their relatives feel burdened and experience more stigma than caregivers of patients who have an epileptic seizure.”
The researchers add that patients with FS can also hold stigmatising views about their diagnosis.
“Some data sources suggested that patients often experience their diagnosis negatively and equate it to being told they are ‘crazy’, ‘faking’, or that it is ‘all in my head’.”
Functional seizures profoundly impact the social functioning of those affected by the condition and make it difficult for them to find a job, the researchers say.
“Furthermore, our review suggests a dearth of knowledge focusing on the nuanced cultural and contextual influences on the stigma around FS, leaving a gap in literature pertaining to the development and implementation of interventions that are culturally and contextually sensitive and aimed at minimising this stigma.”
According to the researchers, a lack of funding and recognition by governments likely contributes to FS remaining poorly understood and stigmatised.
“The stigmatisation of FS is not only a medical or societal issue, but also a governmental matter. If politicians recognise FS as an important and highly prevalent disorder, it would be much easier for patients to access governmental aid and for scientists to have funding for their research.”
They emphasise the need for more research that focuses specifically on the stigmatisation of FS, and on factors that contribute to this, as well as accessible interventions and guidelines addressing it through education and training.
“People with FS must be supported, and we must increase our knowledge about the condition.”
“We also need more investigations into how patients with FS experience stigma, as well as into the perceptions of their family, friends, and caregivers.”
“Finally, healthcare professionals should be educated and trained so that their attitudes, perceptions and quality of interventions regarding patients with FS can improve.”
Provided by: Stellenbosch University
