If you are a woman with epilepsy, a family member of a women with epilepsy or a Healthcare professional, you might be interested in helping a study which we believe may have the potential to make a huge impact on the future care of women with epilepsy in Ireland, who are planning pregnancies in the future.
The project - called EpiKNOW - aims to understand the Health Information needs of women with epilepsy from preconception to postpartum, both in terms of what is available and what needs to be developed to fill identified gaps in information.
The project is being led by Dr. Aisling Walsh at the Department of Public Health & Epidemiology at the RCSI, assisted by Dr, Jade Parnell who is the postdoctoral researcher working on EpiKNOW. The project also has input from other researchers and healthcare professionals – as well as women with epilepsy themselves.
From the outset of providing funding towards this research, Epilepsy Ireland have always stated that we firmly believe has the potential to make a huge impact on the future care of women with epilepsy in Ireland, who are planning pregnancies in the future.
Since it began in 2022, the research has investigated what information is available online for women with epilepsy for preconception/postpartum and the quality of these resources. It has also interviewed 34 women with epilepsy and 23 health professionals in Ireland. The information from these interviews has directly fed into the final stages of this project, which is to have women with epilepsy, their family members, and health professionals in Ireland complete a survey to find out what type of resource they would prioritise to be developed for women with epilepsy in these stages
This survey is now live and we are appealing to women with epilepsy to please take part in this aspect of the study. Due to the ethical processes which have been attached to the study, the survey can only be accessed when women with epilepsy reach out to EpiKNOW’s postdoctoral researcher, Dr. Jade Parnell, expressing an interest in completing the survey and contributing to this ongoing research. Dr. Parnell will respond with further information and how you can share your preferences via the survey with the research team.
We are encouraging all women with epilepsy reading to please reach out to Dr. Parnell by emailing jadeparnell@rcsi.ie in order to complete the survey on your preference for the resources that need to be developed – every response will be vital!
Thank you in advance for contributing to this important research.
If you need any support or information on your or your loved one's journey with epilepsy, 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. Women with epilepsy can find further information and advice by visiting the 'Women' page on our website. If you'd like to learn more about the EpiKNOW project, visit the 'Research' section of our website.