Epilepsy affects about one in every 100 people. In Ireland, 37,000 people over the age of five live with epilepsy and 25% of these 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, with women with epilepsy, their families and healthcare professionals, health information needs along the preconception to postpartum continuum, and to identify and co-develop prioritised evidence-based resources to support women and health professionals during this period.
We will conduct a sequential, mixed methods, participatory study. Firstly, we will identify existing national and international evidence-informed resources to support the health information needs of women with epilepsy from preconception to postpartum. Secondly, we 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, we will undertake a consensus building real-time Delphi study to prioritise and plan health information and education resources. Finally, we 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.
