Electronic Thesis and Dissertation Repository

Thesis Format

Monograph

Degree

Master of Science

Program

Nursing

Supervisor

Tryphonopoulos, Panagiota

2nd Supervisor

Suller Marti, Ana

Co-Supervisor

Abstract

In Canada, it is estimated that 300,000 people are living with epilepsy, half of whom are women (Patel & Grindrod, 2020). A diagnosis of epilepsy brings inherent psychosocial challenges including increased risks of developing mood disorders, interpersonal and institutional stigma, reduced employment rates, increased mortality rates, low socioeconomic status, and reduced quality of life (Thomas & Nair, 2011; Josephson & Jetté, 2017; Josephson et al., 2017). In addition to the inherent challenges of living with epilepsy, women with epilepsy (WWE) face difficulties with fertility and family planning, contraception, teratogenicity, sexual function, management of care during and after pregnancy, safety while caring for children, hormonal influences on seizure frequency, and additional bone health issues (Aylward, 2008; Crawford et al., 1999; Herzog et al., 2016; Noe, 2007; Pack et al., 2009). The purpose of this study was to explore the implementation of the recommended care for WWE for sex-specific health issues from the perspective of the WWE. Using a cross-sectional survey, we investigated the experience of WWE regarding menstruation, family planning, prenatal and perinatal care, hormonal influences and therapies, and bone health. From the perspective of knowledge translation, this study is one measure of the recommended care reaching the patient.

Summary for Lay Audience

In Canada, an estimated 300,000 persons live with epilepsy, half of whom are women. In addition to the challenges of living with epilepsy, women with epilepsy (WWE) also face difficulties with fertility and family planning, contraception, teratogenicity, sexual function, management of care during and after pregnancy, safety while caring for children, hormonal influences on seizure frequency, and bone health. From our experience of working in the Epilepsy Monitoring Unit of the Western Epilepsy Program at University Hospital (London Health Sciences Centre) in London, Ontario, these sex- and gender-specific issues not only pose health teaching and treatment challenges, but they also affect the psychosocial functioning and the quality of life of WWE. When we searched the existing literature to find research on effective interventions for caring for WWE, it was severely lacking. There are articles that provide guidelines, but limited research on whether the health goals are being met. Most of these guideline articles focus on contraception and pregnancy, very few focus on other aspects of a WWE’s life, such as menopause, post-partum mental health, and transgender WWE. This is worrying because epilepsy and the use of ASDs inherently increase the risk of developing mental health disorders and compromising bone health and the efficacy of hormonal treatments respectively.

The goal of this study is to investigate the provision of healthcare for WWE across the lifespan from the perspective of WWE. A self-reporting survey was administered to participants to assess their experiences. Understanding the perspective that WWE have of their healthcare is important to determine if the standards of care are being met. By conducting this study our goal is to create the foundation needed to advocate for change in how WWE are cared for in Ontario.

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