Principal Investigator
Dr Aisling Walsh, Department of Public Health and Epidemiology, RCSI
Investment
€174,609, over two years of which €15,000 is provided by Epilepsy Ireland. The project is funded by the Health Research board under the Applied Partnership Awards 2022. Co-funding of €15,000 is also provided by the HSE’s National Women and Infants Health Programme
About the Project
Approximately 25% of all people with epilepsy in Ireland 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 study proposes to identify, alongside women with epilepsy, their families and healthcare professionals, health information needs along the preconception to postpartum continuum. It will also identify and co-develop prioritised evidence-based resources to support women and health professionals during this period.
The researchers will conduct a sequential, mixed methods, participatory study. Firstly, they will 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.
Finally, they will co-design and co-produce health educational resources to support women with epilepsy and health professionals to complement their services during this period.
Throughout the project, women living with epilepsy will be included as experts by experience on their own lives and medical conditions. Through the co-production of resources, women will have better access to evidenced-based health educational resources to improve knowledge from preconception to postpartum.
Healthcare professionals can use these resources to complement their services and share with women with epilepsy who use their services, ranging from primary care to specialist epilepsy care, and across maternity settings.
The study is led by Dr Aisling Walsh, from the Department of Public Health and Epidemiology, RCSI and other research team members include: Sinead Murphy & Cora Flynn, Registered Advance Nurse Practitioners in epilepsy; Profs 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.
Epilepsy Ireland’s co-funding contribution (€15,000) will cover the design and production of the health education resources.