Abstracts

Rationale: India and China, the most populous countries in the world, represent 20% of the world’s epilepsy population. An epilepsy treatment gap of 22% to 90% is reported in India, and women with epilepsy (WWE) suffer more than men in that country. Little research has been done to qualitatively explore the treatment choices and barriers to treatment among this population; therefore, the purpose of this study was to describe the lives of women living within the epilepsy treatment gap in the outskirts of Kozhikode, South India.Methods: A focused ethnography was conducted with participants recruited through purposive and snowball convenience sampling. Data were collected through face-to-face in-depth interviews, participant observation, and field notes. Inclusion criteria were adult women diagnosed with epilepsy living with seizures for the past 2 years, either not on anti-epilepsy drugs (AEDs) or not adhering to a AED protocol for at least 1 year, and willing and able to consent to be in the study. The exclusion criteria were comorbidities that compromise the ability to participate in an interview, diagnosis of non-epileptic spells or pseudo-seizures, or being pregnant or breastfeeding. Qualitative data were analyzed with the aid of NVivo software using thematic analysis. Demographics were summarized using descriptive statistics.Results: Of the 21 potential participants identified through traditional healers and word of mouth from the Kozhikode district, 8 of 14 who met the inclusion criteria declined to participate, citing fear of societal stigma. Six women, ages 20 to 63 years, and seizure duration of 4 to 42 years, voluntarily consented to participate. The belief that emerged as the most important factor in the cause of epilepsy is that it is the result of “evildoing” or a “divine curse.” Participants initially sought AEDs for treatment but later opted out of this treatment because of misconceptions, financial constraints, medication side effects, accessibility issues, and not considering their treatment a priority. “Finding a cure for seizures” was the primary reason for seeking different types of treatment. The trend of mixing Western, traditional, and religious prescriptions is a common practice in India. The participants’ treatment decisions were made based upon their perceptions about the disease and the advice given by others, especially family members.Conclusions: This study, the first of its kind in India, explored the beliefs and perceptions of WWE, laying the foundation for future research. The study demonstrates a need for culturally appropriate educational interventions that are both individual and community-based; health policies to ensure affordable and accessible treatment; and clinical practices to empower WWE and to foster active participation in appropriate treatment by WWE in the Kozhikode district.