Social support for self-management behaviors among people with epilepsy: A content analysis of the WebEase program

Social support is an important component in managing epilepsy; however little is known about support provided to people with epilepsy. This study examined whom people with epilepsy identify as supportive, and how those individuals support people with epilepsy's self-management efforts. Data come from the WebEase project, an effective online epilepsy self-management program. People with epilepsy who participated in the pilot (n = 35) and efficacy trials (n = 118) were included. A content analysis was conducted on responses to open-ended questions related to support. The majority of participants provided information about their supporters. The number of support providers ranged from 0 to 6, with about 12% indicating no support. Parents and significant others were most commonly listed as supporters. Support providers mainly offer emotional and instrumental support, reminders and aid for taking medication, and support for self-management strategies. These results could be useful for interventions aimed at bolstering support in order to improve self-management.

►Support for self-management can be an important component in managing epilepsy. ►We examined statements of support from participants in a self-management program. ►Most participants identified a supporter, although 12% indicated no support. ►Supporters offer emotional, instrumental, seizure, and self-management supports.