We are delighted to announce that we have recently invested in a new research project, focussed on the health education and information needs of women with epilepsy.
This latest investment means that we have now surpassed €1.5million in total research investments, since we first began investing in research in 2009 - a figure we are immensely proud of and one that would not be possible thanks to the continued support of our members, volunteers and supporters.
The latest project we have invested in is entitled ‘Health information and education resources for women with epilepsy from preconception to postpartum’ and will be led by Dr. Aisling Walsh of the Department of Public Health and Epidemiology at the Royal College of Surgeons Ireland. Dr. Walsh will be supported by an extensive research team, all with expertise in supporting women with epilepsy – both in a research and clinical setting.
This includes Sinéad Murphy & Cora Flynn, Registered Advance Nurse Practitioners in epilepsy; Professors Anne Matthews and Veronica Lambert, DCU School of Nursing; Dr Deirdre Daly, TCD School of Nursing and Midwifery; Prof Kathleen Bennett, Head of Data Science Centre RCSI; Dr Fergal O'Shaughnessy, Senior Pharmacist Rotunda; Killian McGrane, HSE and Claire Daly, PPI contributor.
In Ireland, approximately 25% of all people with epilepsy are women of childbearing age. Although most women with epilepsy can expect normal pregnancy outcomes, reproductive choices are complex.
To date, no study has examined the health information needs of women with epilepsy and their families from preconception through to postpartum in Ireland. This new study which we have invested in will change that.
This study will identify and co-develop prioritised evidence-based resources to support women and health professionals during this period.
The researchers will firstly identify existing national and international evidence-informed resources. Secondly, they will explore the health information, education and resource needs of women with epilepsy in Ireland, from the perspective of women, families and health professionals, through in-depth interviews.
Thirdly, they will undertake a consensus building real-time Delphi study to prioritise and plan health information and education resources. The Delphi technique is a well-established approach to answering a research question through the identification of a consensus view across subject experts. It allows for reflection among participants, who can nuance and reconsider their opinion based on the anonymised opinions of others.
Finally, researchers will co-design and co-produce health educational resources to support women with epilepsy and health professionals. Professionals will use these resources to complement their services from primary care to specialist epilepsy care and across maternity settings.
Throughout the project, women living with epilepsy will be included as experts by experience. Through the co-production of resources, women will have better access to evidenced-based health educational resources to improve knowledge from preconception to postpartum.
The study is funded by the Health Research board under the Applied Partnership Awards 2022 and will see a €174,609 investment across 2 years, of which €15,000 is provided by Epilepsy Ireland. Co-funding of €15,000 is also provided by the HSE’s National Women and Infants Health Programme.
We believe the study 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. Our ongoing advocacy campaign surrounding Sodium Valproate is one such example of why this research is so important.
We look forward to working with the research team involved and to providing further updates on this study as it progresses.
Investing in research like this, and the projects we have previously funded, would not be possible without the continued fundraising efforts of our members, supporters and volunteers.
We would like to say a huge thank you to everyone who has supported Epilepsy Ireland in any way – particularly all the subscribers to our ‘Time for a Break’ monthly draw.
To learn more about the research projects we have invested in, visit the ‘Research’ section of our website.
Further information
- The Epilepsy Information section of our website contains specific information for women with epilepsy who may be planning a pregnancy, and other useful information and advice specific to women living with the condition. Visit the ‘Women’ section of our website to view this resource.
- Further information on our Time for a Break draw can be found by visiting the ‘Research’ section of our website.
- If you are thinking of starting a family, seek out the advice of your epilepsy specialist team before doing so. There are key considerations that can be taken account of before becoming pregnant - all designed at keeping you and your baby safe during any prospective pregnancy. If you have become pregnant outside of pre-conceptual planning, contact your Epilepsy team without delay to arrange an appointment to review your care. DO NOT stop taking your Anti-Seizure Medications under any circumstances without seeking the advice of your specialist first.
- If you need any further information or advice regarding your/your family member’s 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.