The preconception care experiences of women with epilepsy on sodium valproate

Purpose: To understand the preconception experiences of women with epilepsy who have been taking the
teratogenic drug valproate.
Methods: Seven women were recruited, three from a preconception clinic and four from an antenatal
clinic in a region of the UK. All had taken valproate preconceptionally. Three preconception clinic
encounters were observed and audio-recorded. Interviews with all women were analysed using
Interpretative Phenomenological Analysis (IPA).
Results: Women experienced a “trajectory of balance”. Women moved from “maintaining balance” by
using valproate to control seizures, to a “shattering of harmony” at the prospect of changing medication
and as a result of the physical and mental effects of changing medication, to “restoring balance” which
could involve “a new self” due to dramatic changes. Women balanced their health needs with those of
their baby, and took responsibility for medication decision-making. They found it difficult to see “who is
looking after me” in the healthcare system, either to access preconception care, or to support them
through the stress of changing medication. Their journey ended with coming to terms with a variety of
experiences: choosing not to have a baby due to unsuccessful change from valproate, recognising that a
child from a previous pregnancy had been harmed by valproate or that the current pregnancy might be at
risk, or successful medication change in preparation for pregnancy.
Conclusion: A clear and adequately funded preconception care pathway is needed from epilepsy
diagnosis, including support for stress. Understanding what influences maternalisation may help
understand uptake of preconception care.