A new Irish-led study, part-funded by Epilepsy Ireland, the Health Research Board and HSE National Women and Infants Health Programme, has been featured in the leading medical journal Epilepsy & Behavior.
The EpiKNOW project was led by researchers in the Royal College of Surgeons in Ireland (RCSI) and one of the project's tasks was to review the quality of online information available to women with epilepsy (WWE) from preconception through to the postpartum period.
For many women living with epilepsy, planning a family brings important questions – about medication, managing seizures during pregnancy and postpartum, and caring for a newborn. With so much advice available online, it can be hard to know what to trust.
As part of their research, the EPIKNOW team searched Google, YouTube, the Google Play Store and Spotify using common terms like ‘epilepsy and pregnancy’ and ‘women and epilepsy.’
Findings
Out of 240 initial results, just 43 resources (including websites, videos and podcasts) met the study’s criteria and were assessed using recognised evaluation tools. These tools measured how reliable and well-presented the health information was.
On average, the quality of information was rated as ‘fair.’ While some resources offered accurate and clear advice, others were incomplete, hard to read, or lacked evidence for their claims.
28% of online resource supporting women with epilepsy deemed poor quality, and only 40% of online resource supporting women with epilepsy from preconception to postpartum were classified as good or excellent quality. Most of the information focused on pregnancy itself, with far less about the postpartum period - a crucial time when women may face challenges around breastfeeding, medication safety, and managing seizures while caring for a newborn.
Websites and videos generally scored higher for clarity and accessibility than podcasts, which tended to use more complex language or offer less practical advice, and no suitable apps were found. Importantly, resources created by non-profit or patient organisations often performed better in readability and relevance than those produced by purely academic or medical institutions.
Relevance
For Epilepsy Ireland, these findings reinforce how vital it is for women with epilepsy and the healthcare professionals who support them to have access to accurate, sensitive and easy-to-understand information at every stage of reproductive health. The results also highlight the continued role of trusted organisations like Epilepsy Ireland in providing dependable guidance and connecting women to evidence-based resources - and we were very pleased to see Epilepsy Ireland rank so highly in the resource produced highlighting information available for women with epilepsy.
Speaking about the publication of the paper in Epilepsy and Behaviour, study lead Dr. Aisling Walsh said:
Women with epilepsy deserve clear, confident information when making decisions about pregnancy and parenting. This research shows how much work there is still to do to make online information reliable and inclusive - but it also gives us a roadmap for improvement.
To read the full paper recently published, visit the Epilepsy & Behaviour website while the resource which has been produced by the EpiKNOW team ranking the quality of online information resources for women with epilepsy from preconception to postpartum is available to read and download at the end of this article.
We would like to congratulate all the EpiKNOW team for the publication of this research, something we were proud to invest in thanks to the continued fundraising support of all members, volunteers and supporters.
Continued Work and you're invited to the Special EPIKNOW showcase event!
The publication of this research and assessment of the resources available to women with epilepsy online does not signal the culmination of the EpiKNOW project.
As part of their research, in partnership with subject matter experts and women with epilepsy, the EpiKNOW team has identified where information gaps exist for women with epilepsy in preconception to postpartum. These gaps have been identified and a suite of new resources have been produced to help bridge these information gaps.
These new resources will be officially launched at a special event in the Royal College of Surgeons on November 27th - and you're invited to attend to learn more about what has been produced; hear from experts and women with epilepsy; and learn more about the project as a whole. Visit the 'Events' section of our website to learn more and register.
We look forward to seeing you there.
In the meantime, if you are a woman with epilepsy and need any support or information on your journey with the condition. please do not hesitate to contact your local Community Resource Officer. You can find their details by visiting the 'Our Local Service' section of our website. You can also find further information by visiting the 'Women' section of our website.