What contributes to recovery in the long term? Young people's experiences with psychogenic non-epileptic seizures (PNES)

Abstract

Objective: The aim was to explore young people's experiences with PNES 2-9 years post-discharge from a multidisciplinary epilepsy center. We were particularly interested in their understanding of the underlying causes of their seizures, and the factors that may have contributed to their recovery.

Methods: A total of 52 patients with PNES participated in a telephone interview. The mean age was 20.9 years (range: 16-28 years), and 45 (87 %) were women. The patients had received psychoeducation from a multidisciplinary team during a 2-4 week inpatient stay at our hospital between 2012 and 2020. We qualitatively analyzed the data using thematic analysis.

Results: After a mean of 4.7 years (ranging from 2-9 years) post-hospital discharge, 90.4 % (47/52) of the participants were able to identify underlying stressors for the seizures. The cumulative burden of physical, social, and psychological stressors was considered overwhelming and was attributed to causing seizures, especially among those under 18. Elder participants were more likely to believe the seizures were related to one or more past traumas. Overall, a lower level of anxiety and stress was perceived essential for achieving seizure control. Four key factors were identified as crucial to the recovery process: 1) psychoeducation; 2) reduction in psychosocial stressors; 3) establishing good everyday routines; and 4) professional treatment, such as trauma therapy.

Conclusions: A low level of anxiety and stress was found to be crucial for the recovery process. The study suggests that psychoeducation, stress management assistance, and practical facilitation in everyday life should all be components of the standard therapy for young individuals with PNES.

Keywords: Psychogenic nonepileptic seizures; Recovery; Young people.