Experiences of living with epilepsy: An insiders' perspective from adults with epilepsy and their support persons

Many people with epilepsy (PWE) rely on others, mainly spouses or parents, for support with daily tasks. However lived experiences with epilepsy, particularly from the support person's perspective, are relatively unexplored in the literature. This study qualitatively examines the interpersonal relationships between PWE and their primary support person and their experiences with dealing with epilepsy. PWE were recruited from a tertiary epilepsy clinic and eligible people were asked to refer their primary support person. In-depth qualitative interviews were conducted with 22 PWE and 16 support providers, comprising a total 14 dyads and an additional eight PWE and two support providers. The constant comparison analytic method commonly applied in grounded theory, which involves inductive and deductive approaches, was used to identify main themes and relationships between themes. Important themes for PWE and support persons included seizure experiences and control, side effects of seizures and medications, how to help the PWE live a “normal” life, how seizures become part of daily life, and issues of independence and dependence. Additionally, a main theme for support persons was changes they made in their lives in order to care for the PWE and the effects of those changes. Similarities and differences in the lived experiences of PWE and support persons were examined within and between dyads. This study provides insight into the experiences and needs of PWE and their support persons. The results could be used to inform interventions aimed at reducing the burden of epilepsy for both PWE and their support persons.