Abstracts

Rationale: Social support is associated with improved self-management for people with epilepsy; however, little is known about support from the perspectives of both people with epilepsy and the people who care for them. Support may be more effective when the amount that the person with epilepsy needs or wants matches the amount of support they receive from caregivers. We evaluated the alignment between the self-management support that adults with epilepsy report receiving and the support their primary support persons report providing.Methods: Forty-seven dyads of adults with epilepsy and their support persons completed the Epilepsy Regimen-Specific Support Scale. This scale measures perceived available support for assisting with the completion of nine epilepsy self-management tasks. People with epilepsy were asked how often support persons provides support; support persons were asked how often they provide the support. Both people were asked how often they think the person with epilepsy would like the support person to provide support. An alignment variable was calculated by taking the absolute value of the difference between the scores of the person with epilepsy and those of their support person for each item on the scale. Descriptive statistics and bivariate analyses were run in SPSS. Rasch measurement models were used to evaluate alignment across the nine self-management support items. These models are useful because they place persons and items on the same metric (logits).Results: Dyad relationships included adults with epilepsy and their parents (57%), spouses or significant others (30%), other family (11%), and friends (2%). People with epilepsy reported receiving significantly higher amounts of support than support persons reported providing (t=2.31, p=.023). Similarly, people with epilepsy reported wanting more support than support persons thought the people with epilepsy wanted (t=3.50, p=.001). Overall, the results of the Rasch models indicated good model-data fit. Figure 1 shows the calibration of dyads and items along the logit scale. People with epilepsy and support persons had closer alignment for bringing people with epilepsy to the doctor and helping with seizures. Poorer alignment occurred for items that involved reminders, such as reminders for getting enough rest, refilling medication, and taking medication. The type of relationship between the person with epilepsy and support person did not affect alignment.Conclusions: Our results indicate that the alignment of self-management support reported by people with epilepsy and their primary support persons varies across different types of support. Additional research should examine the ways in which alignment of support affects self-management outcomes. Research should also be conducted on the role of improved communication between people with epilepsy and their support persons on items with lower levels of alignment.