What patients say about living with psychogenic nonepileptic seizures: A systematic synthesis of qualitative studies

PURPOSE This is a narrative systematic synthesis of qualitative research investigating patients' accounts of living with psychogenic nonepileptic seizures (PNES). Qualitative methodologies allow patients to share lived experiences in their own words. The examination of patients' own accounts is likely to offer revealing insights into a poorly understood, heterogeneous disorder. METHODS We identified 21 separate studies about PNES published after 1996 and based on analyses of patients' own words. Papers were synthesised inductively and deductively using an iterative approach. RESULTS Five key themes emerged from the synthesis of studies capturing accounts from over 220 patients, reflecting experiences of seizure events, diagnosis, treatment and management, emotional events, and impact on daily life. Patients with PNES discussed the phenomenology of their seizures differently from those with epilepsy. PNES were experientially heterogeneous. Many patients shared a sense of uncertainty surrounding PNES, often resisting psychological explanations. Negative experiences with healthcare professionals were common. Patients seeking validation of their experiences often reported feeling ignored or doubted. Many reported past or current stressful events. Some demonstrated insight into their methods of emotional processing. PNES were described as a significant burden associated with financial and psychosocial losses. CONCLUSIONS Qualitative studies have produced helpful insights into patients' experiences of living with PNES, but many patient groups (men, young people, elderly, non-Western patients) are underrepresented in studies carried out to date. Research capturing these patient groups and using new methods of data collection and qualitative analysis could help to deepen our understanding of this disorder.