Abstract, published in Epilepsy & Behavior
Objective: There are few scientific papers on stigma in families living with psychogenic nonepileptic seizures (PNES), involuntary episodes that look and feel like epileptic seizures but have psychological rather than neurological origins. Using a group of patients with epileptic seizures (ES) and their caregivers as controls, this study aimed to quantify the level of patient and caregiver stigma in PNES and identify associations of patient and caregiver characteristics with it.
Results: Forty-three patients with PNES and 165 patients with ES were recruited. Compared with patients with ES, patients with PNES had shorter disease duration, higher seizure frequency, normal diagnostic data, poorer psychosocial health, and fewer antiseizure medications (ASMs). Patient stigma level was higher in patients with PNES compared with those with ES, and it adversely affected patient quality of life (QoL). Additionally, 28 caregivers of patients with PNES and 99 caregivers of patients with ES were recruited. There were no significant demographic, caregiving, or psychosocial differences between the two caregiver groups. Caregiver stigma level was also higher in caregivers of patients with PNES compared with caregivers of patients with ES, and it was negatively associated with patient QoL and positively associated with patient and caregiver anxiety.
Conclusions: Compared with those with ES, patients and caregivers living with PNES experience stigma more frequently and to a higher extent. Patient QoL emerges as a consistent correlate of that stigma.