Improving awareness, knowledge, and attitude among Malaysian parents of children with epilepsy using an Interactive Animated Epilepsy Education Programme (IAEEP)

BACKGROUND: An information technology (IT)-based epilepsy educational program, the Interactive Animated Epilepsy Education Programme (IAEEP), can potentially help improve awareness, knowledge, and attitude (AKA) of parents of children with epilepsy (CWE) enabling CWE to lead a normal life. Our study aimed to assess the following: i) baseline level of epilepsy AKA of Malaysian parents of CWE and explore potential characteristics associated with low levels of AKA; ii) effectiveness of the IAEEP in improving parental AKA, and whether these effects remained stable over time; and iii) effects of the IAEEP on parental mental state and perception of their child's quality of life.

METHODS: This prospective study includes parents of CWE aged 8-18 years old with no comorbidities. Epilepsy education was delivered using the IAEEP. Parents completed an AKA questionnaire before (time point 1 [TP1]), immediately after (TP2), and 4-6 months (TP3) after the provision of IAEEP. Parent proxy report of Health-Related Quality of Life Measurement for Children with Epilepsy (CHEQOL)-25 questionnaire and Depression, Anxiety, and Stress Scale (DASS)-21 questionnaire was completed at TP1 and TP3.

RESULTS: A total of 78 parents participated in the study. At baseline (TP1), parental responses were rated as "moderate" for awareness domain, "high" for knowledge domain, "very positive" for attitude domain, and "good" for total AKA score domain. No epilepsy or parental characteristics were associated with the low baseline parental AKA levels. After IAEEP intervention, there was a significant increase in all AKA subdomain scores. Post-IAEEP, the AKA of parents were rated as "very high" for awareness domain, "very high" for knowledge domain, "very positive" for attitude domain, and "excellent" for total AKA domain at both TP2 and TP3. Parent proxy CHEQOL-25 report showed significant increments in interpersonal/social and secrecy scale scores between TP1 and TP3. There were no significant differences in the DASS-21 scores between TP1 and TP3.

CONCLUSION: The IAEEP is an effective epilepsy educational tool to increase the levels of AKA among parents of CWE. Following the use of the IAEEP, parents of CWE also reported an improvement of their child's quality of life in the interpersonal/social and epilepsy secrecy CHEQOL-25 domains. There was no impact on parental mental health following exposure to the IAEEP.