Perspectives of Adults With Epilepsy and Their Support Persons on Self-Management Support

• Type of Material: Article
• Authors: Elizabeth Lee Reisinger Walker, Emory University; Christina Barmon, Georgia State University; Robin McGee, Emory University; George Engelhard, Emory University; Claire Sterk, Emory University; Colleen DiIorio, Emory University; Nancy J Thompson, Emory University
• Language: English
• Date: 2014-11-01
• Publisher: SAGE Publications (UK and US)
• Publication Version: Author Accepted Manuscript (After Peer Review)
• Copyright Statement: © The Author(s) 2014.
• Final Published Version (URL): http://dx.doi.org/10.1177/1049732314548880
• Title of Journal or Parent Work: Qualitative Health Research
• ISSN: 1049-7323
• Volume: 24
• Issue: 11
• Start Page: 1553
• End Page: 1566
• Grant/Funding Information: The authors disclosed receipt of the following financial support for the research, authorship, and or publication of this article: Emory University's Laney Graduate School (Professional Development Support), Department of Behavioral Sciences and Health Education (Letz Funds), and an NIH/NIGMS Institutional Research and Academic Career Development Award (K12 GM00680-05).
• Keywords: self-care; HEALTH-PROMOTION; relationships; Social Sciences, Interdisciplinary; caregivers; QUALITY-OF-LIFE; epilepsy; HEART-FAILURE; FAMILY SUPPORT; PATIENT-ADHERENCE; Biomedical Social Sciences; SOCIAL SUPPORT; Information Science & Library Science; Technology; OUTCOMES; BEHAVIORS; Social Sciences, Biomedical; Science & Technology; Social Sciences; Social Sciences - Other Topics; MEDICAL-TREATMENT; social support; CHRONIC DISEASE; caregiving
• Research Categories: Health Sciences, Health Care Management; Biology, Neuroscience

Abstract

Social support is an important mechanism for improving self-management, although little is known about its role in epilepsy self-management. We examined the type of support provided to people with epilepsy and its influence on self-management. We conducted in-depth interviews with 22 people with epilepsy and 16 support persons, representing 14 pairs and 10 unpaired individuals. We analyzed the data using principles of grounded theory. Supporters, who were mainly parents and spouses, aided people with epilepsy in every dimension of self-management. Support for self-management occurred along a continuum from person with epilepsy-led management to support person-led management. Where the pairs fell on the continuum depended on developmental stage, relationship type, and relationship dynamics. Seizure control shaped individuals' experiences with self-management and support within each group. The self-management continuum provides a new aspect that can be integrated into existing models of self- and family management.