4. Discussion
epilepsy, seizure, cancer, WeChat-based, epileptic, chronic disease
EPILEPSY, CANCER, DISEASE, EPILEPTIC, CHRONIC DISEASE
In China, there are 9 million epilepsy patients and 400,000 new epilepsy patients every year, and the incidence of epilepsy in Chinese population is 0.5% to 0.75%, of which about 30% are refractory epilepsy, and more than 80% of epilepsy onset age is preschool.In this study, we found that the FCTI scores (31.79 ± 3.33 and 31.10 ± 4.21) and ZBI scores (51.97 ± 3.90 and 51.00 ± 4.34) at discharge of the 2 groups indicated that the parents of children with epilepsy faced a heavy burden of family care.Burden of home care refers to the negative experience of unpleasantness and discomfort caused by the stress suffered by caregivers in the process of caring for patients, including the physical, psychological, emotional, economic and social life of caregivers. The impact of children with epilepsy on home caregivers is first manifested in the long care time, the limited hospitalization time of epilepsy patients, and the parents bear the main nursing care work for most of the time after discharge, which has a great burden on the physical, psychological and time aspects of the parents of the children.Fortunately, we found that continuity of care after discharge, whether routine in control group or WeChat-based remote management in WeChat group, all reduced FCTI, ZBI, SAS, and SDS scores for home caregivers, suggesting continuous nursing is beneficial to reduce the care burden and negative emotions of family nurses for children with epilepsy after discharge. Importantly, we also found that the score of FCTI, ZBI, SAS and SDS in WeChat group were all significantly lower than the score of FCTI, ZBI, SAS and SDS in control group at the time of 6 months after discharge, indicating that the WeChat based remote follow-up management is more beneficial than routine care to reduce the home care burden and negative emotions of family nurses for children. Previous studies have found that as a telemedicine tool, WeChat-based remote follow-up management is beneficial for disease control and recovery of chronic disease patients and cancer patients, and can reduce medical costs, reduce the burden of family caregivers and improve the quality of life of patients’ families (patients and their home caregivers).Some of the limitations of our study should be noted. First, as a single center study, this study included a low sample size and had regional restrictions. Second, the remote follow-up management based on WeChat is limited for some parents of epileptic children, so many parents are not included, which leads to artificial bias. At last, the long-term impact of WeChat based remote follow up management on epileptic children, such as seizure frequency, medication compliance and quality of life, should be studied in the future.