268544 Experiences of living with epilepsy: An insiders' perspective from adults with epilepsy and their support persons

Monday, October 29, 2012 : 11:00 AM - 11:15 AM

Elizabeth Walker, MAT, MPH , Department of Behavioral Sciences and Health Education, Rollins School of Public Health, Emory University, Atlanta, GA
Christina Barmon, MPH , Department of Sociology, Georgia State University, Atlanta, GA
George Engelhard Jr., PhD , Division of Educational Studies, Emory University, Atlanta, GA
Claire E. Sterk, PhD , Rollins School of Public Health, Emory University, Atlanta, GA
Colleen DiIorio, PhD , Department of Behavioral Sciences and Health Education, Rollins School of Public Health, Emory University, Atlanta, GA
Nancy Thompson, PhD, MPH , Department of Behavioral Sciences & Health Education, Rollins School of Public Health, Emory University, Atlanta, GA
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.

Learning Areas:
Public health or related research
Social and behavioral sciences

Learning Objectives:
Describe the experiences of living with epilepsy from the perspectives of individuals with epilepsy. Discuss the experiences of support persons pf people living with epilepsy.

Keywords: Caregivers, Chronic Diseases

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am a doctoral student and this research is part of my dissertation. I have also worked as a graduate research assistant and project coordinator on three intervention studies for people with epilepsy. The objective for two of the studies was to improve self-management behaviors and the purpose of the third study was to reduce depressive symptoms.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.