In March 2013, UCB and Project HOPE announced the inauguration of a program to improve medical care for children with epilepsy in China and to provide psychological support for their families (Project HOPE Epilepsy Awareness Program). There are around 9 million people with epilepsy (PWE) in China, including 6 million people with active epilepsy.There is an addition of 0.4 million new cases each year in the nation. A survey suggests that nearly 65% of these patients do not receive appropriate medical treatment (Epilepsy Foundation). In developing countries, PWE not only suffer from the condition, but they receive unfair treatment or even discrimination in respect of employment, education and marriage. Therefore, epilepsy is not only a disease, but also an issue of public health and a social problem. In a survey of Chinese children, teenagers and young adults, nearly two-thirds of teenagers and young adults with epilepsy (64.9%) and two-thirds of parents/caregivers of children with epilepsy (64.0%) who responded to the survey had kept epilepsy a secret from others (International Bureau for Epilepsy survey of children, teenagers, and young people with epilepsy: Data in China).To provide relevant education on epilepsy and dispel some of the social stigma associated with epilepsy, UCB and Project HOPE have developed a three year project that will collaborate with health providers at schools to build a comfortable learning environment for children with epilepsy and work with 10 children’s hospitals across China to train health care professionals.
To coincide with International Epilepsy Caring Day, Project HOPE invited guest speak, Dr. Zhiping Wang, Shanghai Children’s Medical Center neurologist,to address parents of children with epilepsy.Dr. Wang’s presentation was entitled “Caring for Children with Epilepsy.” Approximately 27 parents and 10 physicians attended the program which was held at Shanghai Children’s Medical Center on Saturday, June 29th.Dr. Wang focused on three key areas: (1) Diagnosis and treatment of epilepsy (2) Medication compliance and side effect management and (3) Social support in the school system.After her presentation, Dr. Wang answered parent’s questions such as “What should I do when my child has a seizure?”The parents were very engaged because they asked many more questions during this session.At the end of the program, some parents volunteered to give their stories on how their child and family are coping with the diagnosis of epilepsy.Some of their stories had emotional impact on how their child feels “different” from the other children and may not feel that they fit in with their peers.Many of the other parents can relate to these stories.
In addition to listening to the lecture, parents were given a booklet on Epilepsy that Project HOPE developed with the assistance of healthcare providers.The booklet covers topics from “What is Epilepsy” to a “Family Guide on Medication.”There are more information including social issues that may arise with the diagnosis of epilepsy in school and daily activities.
To measure the effectiveness of the program, a pre-test questionnaire was given to all the attendees. Sixty-eight percent had answered the pre-test questions correct which indicates a fairly high level of understanding of the disease prior to the program. However, there was a 26% improvement of the scores after the program which suggests that the program had provided helpful information that was retained by the attendees. On the satisfaction survey, approximately 90% of the attendees had given the program an “excellent” (highest satisfaction score) score and high marks for their interactions with Dr. Wang (86% excellent score). The educational booklet had the highest score of 100% excellent which indicates that the parents found the contents to be relevant and easy to understand. Overall, the healthcare presentation and written materials provided public awareness and deeper understanding of the disease and reduced public stigma associated with the disease.
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