The concept of “control” in people with epilepsy: A qualitative study

Epilepsy fundamentally involves a struggle with “control,” commonly framed in terms of reducing the frequency and severity of seizures. This paper seeks to understand how people with epilepsy (PWE) think about and define control, as well as the psychosocial outcomes of self-managing epilepsy and low perceived control.

Here, we employ a qualitative analysis of interviews with 64 adults with epilepsy in treatment in a tertiary referral center in New York City, conducted between July 2020 and July 2022 as part of a larger study of the lived experiences of PWE. The interviews were coded, and thematic analysis was used to identify participants’ constructions of control and the breadth of illness intrusiveness they experienced.

Findings indicate that applying the illness intrusiveness concept to epilepsy aligns with existing research, revealing that PWE are impacted in numerous ways beyond seizure frequency and severity. Participants reported significant anxiety related to the unpredictability of seizures and the potential embarrassment of having seizures in public. These insights highlight that illness self-management and social challenges are critical components of the experience of having epilepsy.

Our findings underscore the need for a wholistic approach to improving quality of life for PWE that recognizes the broader context of illness intrusiveness. By understanding and enhancing perceived control, future interventions can better support the mental health and overall well-being of PWE.