A mixed methods analysis of support for self-management behaviors: Perspectives of people with epilepsy and their support providers

Abstract

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.

Factors Influencing Engagement, Perceived Usefulness and Behavioral Mechanisms Associated with a Text Message Support Program

“…[ 36 ] In common with our results, other mixed methods studies of health-behavior interventions have found that most patients want disease specific information and self-management strategies. [ 37 ] Our intervention was based on behavioural theory and was developed via a formal process involving consumers. The presented qualitative data provide a deeper understanding of the mechanisms associated with the observed program effectiveness.…”

Patients optimizing epilepsy management via an online community

“…The value of traditional “offline” social support networks for patient self-management has been demonstrated in earlier studies for epilepsy and other chronic conditions. 16 – 19 Psychosocial interventions that improve self-management have previously been demonstrated to improve the health of the chronically ill. 19 – 21 Furthermore, social interactions have also been directly correlated with improved levels of self-efficacy in the epilepsy population. 10 Because this study was powered for detecting changes in the primary outcome measures, we believe that it would be inappropriate to conclude that social interactions on the forum did not affect the improvements.…”

A dyadic model of living with epilepsy based on the perspectives of adults with epilepsy and their support persons

“…For this analysis, we developed a model based on participants’ experiences with living with epilepsy and how the experiences of PWE and PSP are intertwined. The methods for this study have been described elsewhere [29, 30] and are summarized below.…”