Purpose

• Epilepsy causes a significant burden to patients with regard to their health 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.

Methods

• 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.  

Socialization Patterns in Epilepsy PatientsPaola Bailey, PsyD, Olgica Laban-Grant, MD, Martin Lancman, MA, Lorna Myers, PhD, Marcelo

Lancman, MDNortheast Regional Epilepsy Group

Results

• Demographics of the respondents are: 32% were 50+ years old, while the second largest group (18%) were between 28-35 years old.  The majority of participants were single (38%), followed closely by married participants (36%).  With regard to working status, 32% or participants reported being currently employed (either full or part time employment), 9% reported not being well enough to work, 5% reported being students, and 3% were homemakers (the remainder were either not working or could not find employment). The majority of participants reported living with a partner or spouse (36%), with the second largest portion of participants (11%) reported living alone.

• 55% of all participants reported feeling limited in their ability to socialize, while 45% reported not feeling limited in their ability to socialize.

• Of those participants who reported being limited in their ability to socialize, the most commonly cited factors preventing them from socializing were: not being able to drive (17%), medication side effects (9%), social stigma (5%), and inability to drink (4%). The remainder of participants cited “other” factors as most limiting in their ability to socialize.

• 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.

• With regard to computer use, 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. Of the remaining 44% who do socialize on the computer, 30% report using Facebook, 10% use Twitter, 4% use epilepsy blogs, and 3% each regularly use epilepsy chatrooms and epilepsy forums.

45%

17%

9%

5% 4%

Factors Preventing Socialization in People with Epilepsy

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34%

Do not use computers to

socialize41%

Do not have skills/access

25%

Computer Use in People with Epilepsy

Discussion

• 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.

Facebook

Twitter Blogs Forums Chats Dating Services

30%

10%

4% 3% 3%1%

Use of Social Media Outlets in People with Epilepsy

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