Support systems of women with epilepsy in pregnancy: A retrospective needs assessment

PURPOSE To explore support systems for women with epilepsy (WWE) during pregnancy. METHODS Audio-recorded, transcribed, semi-structured telephone interviews with WWE in pregnancy and following childbirth were coded using descriptive thematic analysis. RESULTS Twelve women with epilepsy aged 21-37 years who received care during pregnancy in our epilepsy clinic from 2010 to 2013 were interviewed. Women identified three areas of support: immediate family, their specialist and group support. Some women felt unable to fully share health concerns with family members, but appreciated their support. Neurologists were perceived as reliable sources of support and information, but could be inaccessible. Support groups were seen as beneficial, but may heighten women's fear of epilepsy-related adverse events during pregnancy. CONCLUSION This study highlights the use of support systems by WWE during pregnancy. The richness of the transcribed interviews provides valuable insight into the pregnancy-experience of WWE and helps to direct future clinical and research goals and hypotheses.