Experiences of women of childbearing age with epilepsy throughout their motherhood journey: Results from a social media listening study.

OBJECTIVES

To provide insights into experiences of women with epilepsies (WWE) of childbearing age and identify their unmet needs.

METHODS

We conducted a social media listening study (January 2020-January 2021) across public accounts from six countries to capture posts related to issues associated with the epilepsy motherhood journey.

RESULTS

∼246,000 posts were analyzed. Keyword filtering identified conversation around key stages: preventing and planning pregnancy; conception and fertility; early/late pregnancy and childbirth; breastfeeding and parenthood. Thematic analysis revealed four key themes: (i) uncertainty and fear arise when changing treatments; (ii) worries are intensified by inconsistent communications from/among healthcare professionals (HCPs) and lack of information on how antiseizure medications (ASMs) may affect the developing embryo/fetus; fears about ASM safety grow due to concerns about fetus/child development; (iii) providing safe environment for fetus/infant becomes paramount, but balance is needed to achieve seizure control; (iv) WWE experience challenges, with multiple barriers to safe pregnancy and parenthood, including lack of access to information that supports shared decision making.

CONCLUSIONS

WWE want to be empowered through knowledge and need support in finding relevant information at the right time in their motherhood journey to increase their confidence in shared decision making. Often, information is not provided by clinicians or is difficult to obtain. WWE receive conflicting information, while questions remain unanswered, leading to confusion/heightened anxiety. WWE seek answers from sources other than HCPs, including peers. WWE and families need better support; providing relevant plain-language information at the right stage would enable a more informed motherhood journey experience.