Qualitative analysis of support for self-management behaviors: Perspectives of adults with epilepsy and their support persons

For individuals with chronic conditions such as epilepsy, social support can bolster individuals' capacity to perform self-management behaviors. Relatively little research, however, has focused on how people with epilepsy's (PWE) support persons aid them in managing their condition. We examined the interpersonal relationships between PWE and their primary support persons and the effect of that relationship on the PWE's self-management. PWE were recruited from a tertiary epilepsy clinic and referred the individual they identified as their primary support person. Thirty-eight in-depth qualitative interviews were conducted over the phone with 22 PWE and 16 support persons, comprising 14 dyads and an additional eight PWE and two support persons. Data were analyzed using constant comparison method commonly applied in grounded theory, which employs inductive and deductive approaches for identifying main themes and linkages between themes. Important themes included seizure support, medication reminders and monitoring, seizure tracking, trigger management, and treatment support. Support persons also provided other forms of social support, particularly emotional and instrumental supports, which aided PWE in performing self-management behaviors. Control of care, or the extent to which the PWE has control over their own care and management compared to the support person, emerged as an important interpersonal factor. The support provided and control of care differed depending on the relationship and ages of the dyad members, living situation, and the extent to which the PWE's epilepsy was controlled. These results may be useful in the development of interventions that seek to meaningfully engage support persons in aiding PWE's self-management.