When youth with epilepsy and their parents have insufficient information about the disease, they are known to have more problems with disease management, and they show poor compliance. Providing accurate, reliable, and accessible information with no time and space limitations is extremely important for individuals with epilepsy as well as for their caregivers.
In this study, we aimed to evaluate the content, quality, usability, and efficacy of our web-based epilepsy education program (WEEP) that we developed for youth with epilepsy and their parents.
The sample of this randomized controlled trail was composed of youth with epilepsy who were between the ages of 9 and 18 years and their parents who had applied to the Pediatric Neurology Unit of a tertiary healthcare hospital in Turkey between November 2017 and April 2018. This study was conducted in two stages: (1) the preparation phase, during which we developed a WEEP for epilepsy, and tested its content, quality, and usability; and (2) the implementation phase, during which we evaluated the efficacy of the website by assessing users’ knowledge of epilepsy, seizure self-efficacy, attitudes, and e-health literacy. Before the implementation phase, data collection tools were used to test the prior knowledge of epilepsy of the participants and control groups. Next, the youth and their parents were asked to use the WEEP for 12 weeks, while a control group was not provided with additional education tools. Written consent was obtained from the participants prior to the study in addition to obtaining approval from the ethics committee and permission from the institution where the research was conducted. The data were finally analyzed using SAS 9.4 software.
During the preparation phase, the website was developed and tested for content, quality, and usability. The WEEP was graded 72.7 ± 3.4 points by experts, 92.4 ± 1.63 by youth with epilepsy, and 92.31 ± 1.94 by the parents. During the implementation phase, the efficacy of the web site was evaluated through the assessment of participants’ scores. We found that the mean knowledge, seizure self-efficacy, attitude, and e-health literacy scores of youth with epilepsy in the experimental group had significantly increased after the WEEP (p < 0.05). An increase in the scores of knowledge, anxiety, self-management, and e-health literacy scale was also found among the parents in the intervention group (p < 0.05).
The content, quality, and usability of the WEEP were adequate and effective in improving knowledge, self-efficacy, attitudes, and e-health literacy of youth with epilepsy as well as those of their parents.
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