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The unmet reproductive health needs of women with epilepsy:
A qualitative exploration of family planning decision making

Amanda Dennis, Ibis Reproductive Health, 2010
See also executive summary.

Project abstract

Epilepsy, a poorly understood and often stigmatized disorder, is the most common neurological disorder in women of reproductive age, affecting more than one million women in the United States. Contraceptive and pregnancy decision making for women with the disorder can be complex, as the most common medications used to treat epilepsy reduce the efficacy of hormonal contraception and increase the risk of congenital malformations in offspring if taken during pregnancy.

Ample research has shown that women with epilepsy are confused and under-informed about the family planning options available to them. This is compounded by the fact that many health care providers are overwhelmed by the number of guidelines that have been developed to manage family planning needs in women with epilepsy of reproductive age, and are ill-equipped to implement them. Many women with epilepsy have turned to online resources in search of information; a number of different social media platforms have emerged to facilitate peer-to-peer discussions about contraceptive and pregnancy decision making.

We propose to conduct a qualitative study to better understand how women with epilepsy interpret risks associated with taking medications while using hormonal contraception or while pregnant, and how their understandings of these risks influence family planning decisions. This hypothesis-generating study will have three components:

  • First, we will perform an in-depth desk review of current guidelines for managing the family planning needs of women with epilepsy.
  • Second, we will conduct a content analysis of the social networking tools and online forums utilized by women with epilepsy to ask questions and express concerns about contraception and pregnancy.
  • Finally, we will conduct ten in-depth interviews with women with epilepsy. The results will be used to develop best-practice recommendations aimed at improving access to appropriate evidenced-based reproductive health care for women with epilepsy, and to build further research.

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