Epilepsy Information

American Epilepsy Society (Abst. 2.029)

Socialization Patterns in Epilepsy Patients

Authors: Drs. P. Bailey, O. Laban, M. Lancman, L. Myers, M. E. Lancman

Epilepsy causes a significant burden to patients with regard to their medical as well as psychosocial functioning. Some researchers have suggested that social factors, in addition to seizure frequency, can correlate to quality of life. Data also suggests that people with epilepsy tend to report lower levels of social support and activity than the general population. This study aimed to examine the self-reported use of various socialization mediums (computer based and otherwise) as well as perceived social barriers amongst adult patients diagnosed with epilepsy.


A questionnaire was designed to assess preferences in socialization practices, frequency of interpersonal contact, use of social media, and perceived barriers to socialization. This questionnaire was given to all adult patients in our practice as part of their routine intake packet and was completed by a total of 1010 adult participants. Descriptive statistics were used to analyze the data.

Analysis revealed that 55% of all participants reported feeling limited in their ability to socialize; the most commonly cited factors preventing them from socializing were not being able to drive (17%) and medication side effects (9%). Social stigma and inability to drink had negligible effects on socialization. Despite reporting limitations in socialization, 63 % of participants reported speaking on phone with friends or relatives on a daily basis, 69% see relatives weekly, 68% see friends weekly, and 50% of those who work report socializing with workmates. The majority of participants (52%) reported using the computer on at least a weekly basis, yet as high as 25% reported either not having access to or possessing the skills necessary to use a computer. Of the participants who do use the computer regularly, the majority (56%) reported not using it to socialize. In the remaining 44% who do socialize on the computer, 10-30% use typical social media sites, 4.5% visit epilepsy blogs, and 3% use epilepsy forums and chat rooms.

These results show that despite the plethora of technological social mediums that appeared in recent years, most adults with epilepsy continue to engage in more “personal” forms of socializing. A significant finding that may play a role in this is that one quarter of our sample did not have access or know how to use a computer. This information allows epilepsy treatment centers to better understand patient’s socialization needs and social preferences when communicating with and designing effective models of social support and advocacy.