Illness representations and coping styles in Functional Seizures
Research type
Research Study
Full title
Illness representations and coping styles in people with Functional Seizures
IRAS ID
348241
Contact name
Isobel Williams
Contact email
Sponsor organisation
Newcastle University
Duration of Study in the UK
0 years, 7 months, 31 days
Research summary
Functional Seizures (FS), also known as Non-Epileptic Attack Disorder or Psychogenic Non-Epileptic Seizures, are episodes that look like epileptic seizures but do not involve abnormal brain activity. FS can cause significant emotional distress, such as anxiety and depression, and can impact daily life, including work and social activities. Despite these challenges, we still know little about how people with FS understand their condition or how they cope with it.
This study focuses on "illness representations," which are the thoughts, beliefs and expectations people have about their illness. These include ideas about what caused the illness, how long it will last, how it affects their life, and whether it can be controlled. Research suggests that people with FS often see their condition as unpredictable and uncontrollable, which might lead to less helpful ways of coping, such as avoiding certain situations. We are also looking at a concept called "Intolerance of Uncertainty" (IU). IU is the difficulty someone has with handling situations where things are ambiguous or unpredictable. We think IU might explain why some people with FS may resort to avoidance to cope with their seizures.
To explore these ideas, this study will recruit up 194 participants with a diagnosis of FS from two streams a) non-epileptic attack disorder service and b) online methods. Participants will be asked to complete a survey which will collect demographic information (including seizure characteristics) and measure participants illness representations, coping styles and IU using validated self-report questionnaires. Also, participants will complete self-report questionnaires looking at symptoms of anxiety, depression, and how FS impacts their daily life. The main analysis will assess relationships between variables, with mediation analysis examining the role of IU in linking illness representations to coping styles. This research could help inform better support and treatments for people living with FS.REC name
London - Surrey Research Ethics Committee
REC reference
25/LO/0260
Date of REC Opinion
24 Apr 2025
REC opinion
Further Information Favourable Opinion