A preliminary study of educational training for epilepsy caregivers

Abstract

Background: Epilepsy is a chronic disease with many neurological and psychiatric symptoms. Patient and their families become the target of discrimination. According to the World Health Organization, by 2023, more than 50 million people will be living with epilepsy in the world, but they do not receive the necessary care. As a result of epileptic seizures, injuries, loss of memory, loss of consciousness, and psychomotor agitation may lead to dangerous behavior for themselves and others, so they need constant supervision and support from others. In a study conducted among caregivers of people with epilepsy in Asian countries 72.1% of caregivers were women, 55% were their parents, and 51.4% were unemployed. It was concluded that there is a need for psychological support and training to reduce the burden of caregivers and prevent burnout in the future because there was a lot of caregiver workload, depression, anxiety, and stress. People with similar problems work together to solve their problems appropriately and share their feelings, which is called a self-help group, and using cognitive psychotherapy to correct one’s misconceptions and perceptions is effective. That is why chose this topic. Aim: To study the problems in the care of epilepsy patients. Materials and Methods: A descriptive, cross-sectional study was conducted in a hospital-based environment using a questionnaire survey method. The research was conducted at the National Mental Health Center between July 1 and August 1, 2023. This research was approved by the Ethics Committee of MNUMS (No 2023/06/16/ 2023/03-08). Graphics and tables were prepared using Microsoft Word and Microsoft Excel, and statistical analysis was conducted with SPSS 21.0. Results: 8 male (26.7%) and 22 female (73.3%) caregivers aged 23-80 years old participated in the study, 69.3% were 40-69 years old, and 49.5% were retired. Most of the caregivers were fathers and mothers (n=13, 42.9%) and brothers and sisters (n=7, 23.1%) who had been caring for patients with epilepsy for 10-51 years. 36.1% of the patients got seizures every day or many times a day, and according to the caregivers, sleeping poorly (n=27, 89.1%), in an extremely hot and humid environment (n=26, 85.8%), and when they are tired (n=24, 79.2%) said that consumption of alcoholic beverages (n=6, 19.8%) is more likely to cause seizure, and switching one type of anti-seizure drug to another (n=7, 23.1%) has less effect on falls, which is not statistically significant (p= 0.21) will be. 26.4% of the caregivers said that it is right to use something like a spoon or fork to open the patient’s mouth when their teeth are clenched due to a fall, while 9.9% said they don’t know if it is right. 42.9-69.3% of the caregivers who participated in the study were afraid to communicate with the patient due to violent behavior, they refused to communicate, they hid the fact that the patient had a seizure (29.7%), they were disgusted with the patient unconsciously passing stool during a seizure (29.7%), 5 cases the patient was conscious. They said that some members of the family ran away in fear. 4 of the caregivers had previously participated in training for a short period, and 85.8% responded that they needed to participate in training. We are planning to start caregiver training. Conclusions: Patients with epilepsy have many neurological and psychiatric symptoms, and their caregivers have a negative attitude about some of the factors that affect seizures, measures to be taken during seizures, and communication, so cognitive psychotherapy or mental education should be provided based on questionnaires taken from caregivers. it is necessary to organize the training.