Socialization characteristics in persons with epilepsy.

OBJECTIVE

The purpose of this report was to describe social behaviors and preferences in adults with epilepsy, including self-reported use of various socialization media (face-to-face and indirect communication) as well as perceived social barriers.

METHODS

1320 consecutive persons with epilepsy (PWEs) confirmed through inpatient video-EEG monitoring were administered a questionnaire on the day of their first appointment. The questionnaire was designed to assess preferences in socialization practices, frequency of interpersonal contact, use of social media, and perceived barriers to socialization. The survey was developed to gain a better understanding of the socialization behaviors and preferences of our patients for the future development of customized activities in our wellness program.

RESULTS

Our sample revealed higher rates of unemployment and single status as compared to the US Census of 2012. With regard socialization however, many were quite social (86% reported daily/weekly communication with friends and family via telephone, 71% saw relatives in person weekly, 68% saw friends weekly, and 65% reported using the computer daily/weekly to socialize). Facebook® was the preferred on-line social media. Indoor/solitary activities were most common with 63% stating they watch TV/read/use the computer followed by physical exercise and spending time outdoors (36%). The frequency of socialization with friends, relatives, and coworkers decreased with the respondents' age and the longer the respondent had carried the diagnosis of epilepsy. Respondents who were taking a greater number of AEDs or were considered refractory were less likely to consider participating in socialization-enhancing activities. The primary barriers to socialization that respondents endorsed were driving prohibition and medication side-effects. Respondents expressed the greatest interest in online support groups or educational programs (31%), office-based support groups (25%), and volunteering (19%).

CONCLUSION

Although the respondents indicate that they do face barriers to socialization, a majority report frequent communication with relatives and friends via phone, in-person and social media. When designing wellness interventions with this group of patients in the future, online, as well as face to face options for support appear to be desired by a number of PWEs.