Social support is associated with improved self-management for people with chronic conditions, such as epilepsy; however, little is known about the perceived ease or difficulty of receiving and providing support for epilepsy self-management. We examined patterns of epilepsy self-management support from the perspectives of both people with epilepsy and their support persons. Fifty-three people with epilepsy and 48 support persons completed a survey on epilepsy self-management support. Of these individuals, 22 people with epilepsy and 16 support persons completed an in-depth interview. Rasch measurement models were used to evaluate the degree of difficulty of receiving or providing support often for nine self-management tasks. We analyzed model-data fit, person and item location along the support latent variable and differential person and item functioning. Qualitative methods were used to provide context and insight into the quantitative results. The results demonstrated good model-data fit. Help with seizures was the easiest type of support to receive or provide more often, followed by rides to a doctor's appointments and help avoiding seizure triggers. The most difficult types of support to receive or provide more often were reminders, particularly for taking and refilling medications. While most participants' responses fit the model, responses of several individuals misfit the model. Person misfit generally occurred because the scale items did not adequately capture some individuals' behaviors. These results could be useful in designing interventions that use support as a means of improving self-management. Additionally, the results provide information to improve or expand current measures of support for epilepsy self-management to better assess the experiences of people with epilepsy and their support persons.
Keywords: Epilepsy; Mixed methods; Rasch analysis; Self-management; Social support.
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