A dyadic model of living with epilepsy based on the perspectives of adults with epilepsy and their support persons

• Type of Material: Article
• Authors: Elizabeth Walker, Emory University; Christina Barmon, Georgia State University; Robin E. McGee, Emory University; George Engelhard, Emory University; Claire Sterk, Emory University; Colleen DiIorio, Emory University; Nancy Thompson, Emory University
• Language: English
• Date: 2015-12-01
• Publisher: Elsevier
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © 2015 Elsevier Inc.
• License: Creative Commons Attribution 4.0 International
• Final Published Version (URL): http://dx.doi.org/10.1016/j.yebeh.2015.09.023
• Title of Journal or Parent Work: Epilepsy and Behavior
• ISSN: 1525-5050
• Volume: 53
• Start Page: 1
• End Page: 9
• Grant/Funding Information: his study was supported by funding from an NIH/NIGMS Institutional Research and Academic Career Development Award (K12 GM00680-05), Emory University’s Laney Graduate School, and the Department of Behavioral Sciences and Health Education.
• Keywords: QUALITY-OF-LIFE; SELF-MANAGEMENT BEHAVIORS; Psychiatry; Social support; SOCIAL SUPPORT; IMPACT; PSYCHOSOCIAL PREDICTORS; Clinical Neurology; Epilepsy; Self-management; Neurosciences & Neurology; Life Sciences & Biomedicine; DEPRESSION; HEALTH-PROMOTION; Seizure control; Science & Technology; INTRACTABLE EPILEPSY; Behavioral Sciences; BURDEN; Quality of life; CAREGIVERS
• Research Categories: Sociology, Individual and Family Studies; Health Sciences, Public Health

Abstract

Epilepsy is a chronic condition that significantly affects the lives of individuals with epilepsy and their support persons, though few studies have examined the experiences of both. To examine these experiences and explore the interpersonal relationships between dyad members, we conducted in-depth interviews with 22 persons with epilepsy and 16 support persons. Data analysis was guided by a grounded theory perspective. We developed a model that shows how epilepsy impacts the lives of both persons with epilepsy and their support persons and how the experiences of persons with epilepsy and supporters influence one another. The core model elements were seizure and treatment factors, relationship characteristics, self-management, seizure control, support provided, illness intrusiveness, and quality of life. Persons with epilepsy moved through the model in five trajectories depending on seizure control, relationship type, and gender. Support providers followed four trajectories based on seizure control, perception of burden, and support for themselves. Persons with epilepsy and their primary support providers have varied experiences in how epilepsy affects their lives. This model could serve as a basis for future research and intervention efforts focused on ways to reduce illness intrusiveness and improve quality of life for persons with epilepsy and their supporters.