Identifying and responding to the reproductive decision-making needs of women with epilepsy

Background: Epilepsy is the most common neurological disorder in U.S. women of reproductive age. For women with the disorder, decisions related to having children, managing health during pregnancy or utilizing contraception (defined here as reproductive decisions) are central to neurological and reproductive health because some epilepsy treatments reduce the efficacy of hormonal contraceptives and increase the risk of malformations in offspring. Additionally, hormonal changes due to pregnancy or contraceptive use can influence seizure activity.

Methods: This dissertation aimed to illuminate the reproductive decision-making processes and needs of women with epilepsy. The Ottawa Decision Support Framework guided the analysis of one year of reproductive-focused postings to online forums for women with epilepsy and 30 in-depth interviews with women with epilepsy of reproductive age.

Findings: Women’s reports showed that the ability to make and implement informed reproductive decisions depends upon financial and emotional resources, as well as existing capacity to clarify values surrounding reproductive and neurological outcomes, navigate a segmented health care system and weather stigma. Overall, women described feeling knowledgeable and prepared to make and implement decisions about having children and managing their health throughout pregnancy, while encountering considerable challenges with contraceptive decisions. In the worst cases, these challenges led to unplanned pregnancies, increased seizure occurrence, regretted sterilizations and lack of trust in clinical providers.

Intervention: Findings were applied to the development of a contraceptive decision aid, designed according to the Ottawa Decision Support Framework. This aid includes information about epilepsy and contraception, stories of women's experiences with contraception, a values clarification exercise and methods for facilitating discussions of contraceptive needs with clinical providers. In a pre-post evaluation with 14 women with epilepsy, the decision aid was found to be acceptable and effective at increasing knowledge.

Conclusions: This dissertation fills gaps in awareness about contraceptive needs of women with epilepsy and moves public health practice forward. The resulting decision aid educates women with epilepsy about their specific contraceptive options, helps them explore values and guides them in implementing informed contraceptive decisions. It can serve as a model for developing similar tools for reproductive-aged women with other health conditions requiring medication.