Lives of Women with Seizures in Malabar, South India

Epilepsy affects the everyday lives of individuals and their families in multifaceted ways, and the challenges associated with this chronic disease are increased when it is not appropriately treated. The conditions are worse in developing countries such as India, where resources are few and ignorance and misconceptions about the disease prevail. Although there are no gender-based differences in the mechanisms through which the disease affects people, women in India with epilepsy suffer more than men. Little is known about the experiences of women living with epilepsy and its treatment gap in India. The phenomenon referred to as the epilepsy treatment gap is the number of people in a given population (expressed in percentage) who require treatment but do not receive it at a given point in time. Thus, the purpose of this qualitative descriptive study was to describe the lives of women living with epilepsy in the outskirts of Kozhikode district in the Malabar Coast of Kerala, South India, where the epilepsy treatment gap is extensive. The study examined (a) the customs, traditions, and beliefs of the Indian women who are living with seizures, (b) how these women actually live their lives day in and day out; and ( c ) their thoughts and perceptions about their seizures. Six participants (ages 20-63) who were recruited through purposive and snowball sampling completed the study. Data that were collected through in-depth semi-structured interviews and field notes were analyzed using thematic analysis to understand meaning of these participants’ experience of living with epilepsy. The themes that emerged from the analysis included: (a) Amulets, “English” medicine and traditional medicine; (b) “money is tight”; ( c ) scarring and stigmatization; (d) “adjust accordingly and live”; (e) “have to suffer”; and (f) “live my life.” The findings of this study could lay the foundation for future qualitative and quantitative research studies and for developing culturally appropriate interventions.