title: A dyadic model of living with epilepsy based on the perspectives of adults with epilepsy and their support persons.
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.
authors.affiliation: Rollins School of Public Health, Department of Health Policy and Management, Emory University, USA. Electronic address: ereisin@emory.edu.
authors.forename: Elizabeth Reisinger
authors.initials: ER
authors.lastname: Walker
authors.affiliation: Department of Sociology, Georgia State University, USA.
authors.forename: Christina
authors.initials: C
authors.lastname: Barmon
authors.affiliation: Rollins School of Public Health, Department of Behavioral Sciences and Health Education, Emory University, USA.
authors.forename: Robin E
authors.initials: RE
authors.lastname: McGee
authors.affiliation: Division of Educational Studies, Emory University, USA.
authors.forename: George
authors.initials: G
authors.lastname: Engelhard
authors.affiliation: Rollins School of Public Health, Department of Behavioral Sciences and Health Education, Emory University, USA.
authors.forename: Claire E
authors.initials: CE
authors.lastname: Sterk
authors.affiliation: Rollins School of Public Health, Department of Behavioral Sciences and Health Education, Emory University, USA.
authors.forename: Colleen
authors.initials: C
authors.lastname: DiIorio
authors.affiliation: Rollins School of Public Health, Department of Behavioral Sciences and Health Education, Emory University, USA.
authors.forename: Nancy J
authors.initials: NJ
authors.lastname: Thompson
mesh_terms: D000328:Adult; D002908:Chronic Disease; D004827:Epilepsy / Q000523:psychology* / Q000628:therapy; D005260:Female; D006801:Humans; D007398:Interpersonal Relations; D007407:Interviews as Topic; D036301:Qualitative Research; D011788:Quality of Life; D012640:Seizures / Q000523:psychology*; D012648:Self Care; D018434:Sickness Impact Profile
keywords: Epilepsy; Quality of life; Seizure control; Self-management; Social support