Another improvement in the matter of epilepsy is that recent research suggests that there is increased concern on the impact epilepsy has on a person’s QOL. This proves to be a gain in the attempt to foster greater public knowledge and awareness on the psychosocial impacts of epilepsy. According to Stevanovic (2014) research into epilepsy-related QOL began to take foot in the 1980’s. In an editorial letter to Epilepsy & Behavior, Stevanovic explains that while in the past there has been an increasing interest in the QOL of persons living with chronic illnesses, twice in recent history research interest sparked regarding the topic of epilepsy-related QOL. Stevanovic conducted an analysis on research performed between the years of 1994 through 2014 on the topic of epilepsy-related QOL. His findings revealed that 1360 or 88% epilepsy-related research journals had been published since the year 2000. Stevanovic also found that the Epilepsy & Behavior journal had infact printed 441 articles on epilepsy-related QOL since the year 2000 which out published any other neurology, seizure or epilepsy journal during that time.
Moreover, Stevanovic explains that much of this research spanned over 57 countries, with as many as 27 publishing multiple studies, which allowed for inclusion of various cultural perspectives. Stevanovic concluded that over a 15 year period Epilepsy & Behavior journal had helped to expand the knowledge and understanding regarding epilepsy-related issues both medically and psychosocially. During this peak in research, Antonak and Livneh (1995) conducted a study as to whether The Test Of Knowledge About Epilepsy (KAE) was a valid measurement of attitudes concerning epilepsy amongst rehabilitation service providers. Antonak and Livneh expressed that testing could become useful for rehabilitation service providers to evaluate any discrepancies in their attitudes towards persons with epilepsy in order to promote “self-awareness” and “self-growth” (p.36).
Other gains by way of stigma reduction can be found in the research of Noble and Marson (2016) on the potential benefit of revising the everyday jargon we use to refer to epilepsy. According to their research, various countries have pushed to remove the stigmatizing term “epileptic” in favor of other terms like “person with epilepsy” which promote the humanity of the individual rather than the disability (p.21). They mention that a debate has developed as to whether this is helpful or harmful. As per Noble and Marson, they cite a study by Fernandes et al. where results demonstrated that the word “epileptic” evoked a greater increase in negative feelings. They assert that this study was only limited to”Portuguese speakers in Brazil” but has been adopted by the US Institute of Medicine as the premise to change the terminology used to describe epilepsy (p.22). Their study was conducted to reproduce the findings of Fernandes et al. study in the United States.
Noble and Marson found that the use of the word “epileptic” in inducing negative attitudes was not as widely applicable across cultures and demographics as suggested. However, they explain that until further research is conducted it should be up to the persons with epilepsy to determine their preferred descriptive terminology. Other findings of their study suggested the negative attitudes regarding epilepsy are linked with lack of awareness. They indicate that educating society could arguably help decrease social stigma.
