Introduction

Among common neurological disorders, seizure disorder shares approximately 1% of the total burden of disease worldwide; out of which, more than three-quarters of the population live in low to lower middle income countries. In India, approximately 10 to 12 million people suffer from epilepsy.1 2 Epilepsy is a disorder of chronic, frequent seizures in which the onset and duration of the seizure cannot be anticipated. This common disease have a notable social stigma which leads to discrimination in the society which further disable the self-esteem of people with epilepsy. Societal stigma often caused by misconceptions, myths, and misunderstandings about the disease have been observed for thousands of years.3 4 Social discrimination often leads to reduced interest to access medical care, and many of them try to hide their disease in view of negative stereotyping.5 6 A range of incorrect and even harmful practices to regulate seizure are frequently embraced; for instance, keeping iron rod in the hand, rubbing irritants to eyes, holding the patient in fire, burns, and ingestion of cow urine.7 8 9 It is imperative to educate about management of this chronic disease to the caregivers and patients with epilepsy to improve self-care.10 11 12

Persons with seizure disorder need to transform their lifestyle primarily focusing on drug adherence and self-care. Modification of the lifestyle and adhering to treatment regime is key for improving their quality of life. Hence, this study is focused to evaluate the self-care management educational program with the support of video, focused on disease characteristics, monitoring symptoms, management modalities, significance of drug adherence, and managing lifestyle pattern to increase patient’s self-confidence by improving their understanding about the disease.

Methods

A single group experimental design (pretest–posttest) was applied to evaluate the effect of comprehensive video-assisted teaching program on self-care efficacy and level of knowledge among patients with seizure disorder. Participants who were in the age group of 18 to 65 years, who were enrolled in the institute’s epilepsy clinic were included in the study. Sample size estimated was 70 with power of the study as 90% and 5% level of significance. It was calculated based on mean difference in drug adherence score before and after implementation of education program as 6.58 versus 7.53.7 Consecutive sampling technique was used. Under Graduate Research Monitoring Committee and Institute Ethical Committee approval was obtained (JIP/IEC/2018/111).

With the help of epilepsy knowledge questionnaire and Epilepsy Self-Management Scale (ESMS), the data was collected by interview method. The ESMS has five domains which focus on safety management, medication management, seizure management, and lifestyle management. The internal consistency reliability was 0.81 to 0.86.13 The epilepsy knowledge questionnaire has 20 items about the knowledge of epilepsy. The score ranges from 0 to 20; the higher the score, the higher the knowledge level.

A video-assisted teaching covering all aspects of epilepsy was given to the people with epilepsy on the day of pretest. At an interval of 3 months, the level of drug adherence, self-care, and knowledge level were assessed.

The continuous data such as age, duration of treatment, number of seizure per last month, number of drugs, and frequency of the drugs was expressed as mean with standard deviation or median with range, whereas the distribution of nominal data including literacy, occupation status, participants’ gender, marital status, domicile status, and comorbidity history was stated as frequency and percentages. Chi-square/Fisher’s exact test was used to analyze the level of drug adherence with sociodemographic characteristics. ESMS domains and knowledge score before and after implementation of video-assisted teaching program was analyzed with paired t-test. The level of statistical significance p < 0.05 was considered as significant.

Results

Results showed 47.1% of the participants belonged to the age group between 19 and 30 years, 54.3% participants were male, 7.1% were illiterate, and majority of the participants (82.9%) were from rural (Table 1).

Majority of the participants (70%) had generalized tonic-clonic seizure, 40% of the participants had the age of onset of seizures at above 20 years, 87% of participants had no family history of seizures or epilepsy. Note that 38.6% of the participants had at least one seizure episode/month. Majority of the caregivers were either parents (41.4%) or spouse (48.6%) (Table 2).

Table 3 shows the pre- and postintervention mean score and standard deviation for the level of knowledge of people with epilepsy who had undergone the educational program (video-assisted epilepsy education). It shows during pretest 12 (17.1%) of the participants had inadequate knowledge regarding epilepsy, 48 (68%) participants had moderate level of knowledge, and 10 (14.3%) participants had adequate knowledge. During posttest, 45 (64.3%) had adequate knowledge, 23 (35.7%) had moderate knowledge, and no participants had inadequate knowledge.

The level of good drug adherence of people with epilepsy improved to 65% from 52% and no participant had poor drug adherence after receiving the video-assisted teaching. Similarly, the percentage of participants who had high level of self-care increased from 71.4 to 88.6% (Tables 4 5). Various sub domain mean score of Epilepsy Self-Management Scale (ESMS) also improved following video-assisted education (Table 6).

Discussion

Conclusion

Educational program to the people with epilepsy is the need of the hour to enhance awareness about disease management and self-care which would improve the outcome of the treatment regimen. Further, this kind of programs helps the patient and their caregivers to overcome the myth and prejudiced lifestyle practices related with this chronic disease. The present study demonstrates that video-assisted epilepsy education improves the knowledge, drug adherence, and self-care in people with epilepsy.