An exploration of lived experience of functional neurological disorder during life transitions: a qualitative study of women with functional seizures in the perinatal period and a systematic review of stigma in young people with FND

This study explores the perspectives of women who have lived experience of functional seizures during the perinatal period. A qualitative approach was used, with data collected by semi-structured interviews with six participants and analysed using Interpretative Phenomenological Analysis. Participants were female adults aged 18 years or over who have experienced functional seizures during a pregnancy taking place within the last ten years. Five group experiential themes were developed: (1) The Experience of Functional Seizures (Onset, Triggers, Aftereffects), capturing seizure experience prior to and during pregnancy, (2) The Pregnancy I Didn’t Picture, reflecting how participants navigated a pregnancy that felt far from typical, (3) Holding Life in a Body I Cannot Fully Trust, highlighting participants’ diminished trust in their own bodies, (4) Experience of Care, capturing participant’s experiences of healthcare during their pregnancy and (5) Patterns Reflected in Care, reflecting the parallels that arose within the data, where one process appeared to reflect another. Results are considered in light of previous research and clinical implications explored.