Objective: The purpose of this study was to describe social behaviors and preferences in adults with psychogenic nonepileptic seizures (PNES) including self-reported use of various socialization mediums (face-to-face and indirect communication) as well as perceived social barriers.
Methods: One hundred forty-one consecutive patients with a diagnosis of PNES that was later confirmed through inpatient video-EEG monitoring were administered a questionnaire on the day of their first outpatient 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: Contrary to prevalent assumptions that patients with PNES tend to be socially isolated, our responders reported that they were in fact quite socially connected (72.2% reported daily communication with friends and family via telephone, 68.54% saw relatives in person weekly, 65.28% saw friends weekly, and 51.2% reported using the computer daily to socialize). Facebook was the preferred online social media. Indoor/solitary activities were most common with 57.44% stating that they watch TV/read/use the computer. 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 (29.46%), office-based support groups (28.57%), and volunteering (23.21%).
Conclusion: Although it has been speculated that social isolation is a significant problem for patients with PNES, considerable participation in social activities was reported. Characteristics of socialization practices may be more nuanced than first believed. When addressing therapeutic interventions with this group of patients in the future, it might be beneficial to offer both distance-based options as well as face-to-face options for treatment and support depending on age and personal preference.
Keywords: Nonepileptic; PNES; Psychogenic seizures; Social isolation; Social media; Socialization.
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