Reducing risks for pregnant women with epilepsy: A qualitative study exploring experiences of using a toolkit at the antenatal booking appointment

Abstract

PurposeEpilepsy is a high risk neurological disease associated with an increased risk of indirect maternal mortality due to sudden unexpected death in epilepsy. No evidence exists on the antenatal booking risk management process in women with epilepsy. This study therefore aimed to explore the experiences of midwives' in using a maternity epilepsy toolkit designed by the author to assist with this process. Midwives were chosen as the sample as they are predominantly the first health professional to learn of the diagnosis at the antenatal booking appointment. ObjectivesThe objective of this study was to explore the experiences of midwives in using a maternity epilepsy toolkit at the booking appointment. DesignThis is a qualitative study using the principles of hermeneutic phenomenology. SettingThe study setting is in One National Health Service (NHS) Trust in the South of England. ParticipantsThe participants of the study were n = 4 community midwives who used the maternity epilepsy toolkit at the booking appointment. MethodIn-depth semistructured one-to-one interviews were used. MeasurementsAn interview schedule using main questions, probes, and reinforcers was implemented. Audio-recorded interviews were transcribed verbatim. Transcripts were checked against audio recordings for accuracy. AnalysisInductive approach organized by phenomenological framework to identify recurrent codes, patterns, and themes were used for analysis. FindingsThe following three themes clearly emerged: ‘foundations of epilepsy knowledge’, ‘using the toolkit in midwifery practice’, and ‘the toolkits influence on learning’. ConclusionParticipants described lack of epilepsy knowledge and experience prior to using the ‘toolkit’ and how being prepared optimized its use. They articulated how it enabled them to collate the epilepsy and treatment history, share risk management strategies, and expedite referrals appropriately. They discussed how it increased confidence, reduced fear, and inspired motivation toward learning. The results of this study will provide a foundation for future research exploring the impact that the ‘toolkit’ has on multidisciplinary care provision. Implications for practiceThis small study demonstrated the ‘toolkits’ potential as a method of increasing knowledge about epilepsy and risk management. Initiation of its use in early pregnancy is intended to promote effective history taking, facilitate the identification of women at increased risk of morbidity and mortality, and encourage joint working through early multidisciplinary team referral and involvement.This paper is for the Special Issue :Prevent 21: SUDEP Summit - Time to Listen