A mixed-methods investigation of the contraceptive needs of teens with epilepsy
Awarded 2012
Large Research Grants
Amanda Dennis, DrPH, MBE
Ibis Reproductive Health

Epilepsy, a poorly understood and often stigmatized disorder, affects more than one million women and girls in the US, making it the most common neurological disorder in females of reproductive age. The disorder is characterized by the occurrence of seizures, which increase the risks of morbidity and mortality and decrease quality of life. For this population, it is critical that neurological and contraceptive care be well integrated because of the potential for interactions between epilepsy medications and hormonal contraceptives that can lead to an increased risk of unplanned pregnancy and seizure occurrence. However, research suggests that adult women with epilepsy face significant challenges accessing appropriate contraceptive care, and that these challenges often first emerge during teen years. Contraceptive challenges women recall experiencing as teens include discomfort discussing contraceptive needs with neurologists, limited opportunities to discuss contraception confidentially, and fear of disclosing epilepsy to family planning providers. However, these reports are limited by women’s abilities to recall their experiences as teens and no research to date has investigated knowledge about contraceptive options, contraceptive health-seeking behaviors, or experiences with contraception for teens with epilepsy. This mixed-methods study seeks to fill this gap in the literature by conducting an online survey with 50 teens with epilepsy and conducting in-depth interviews with 25 teens with epilepsy. These findings will be used to develop a contraceptive decision aid targeted at meeting the needs of teens. An evidence-based decision aid, informed by the experiences of teens with epilepsy, may increase the population’s knowledge about their contraceptive options and stimulate teens to discuss their reproductive health needs with appropriate health care providers, increasing the potential for teens to make informed contraceptive decisions. Findings and the developed resource will also likely have relevance for other teens with chronic health issues whose contraceptive needs remain unmet.