Bridging the Gap Between the Epilepsy Clinic and Community Supports

When first diagnosed, people with epilepsy and their families often have a lot of information to sort through and process, and may not know where to go for support. Ms. Mary Secco has created the Clinic To Community© (C2C©) program that connects people with newly diagnosed epilepsy directly to community support programs and resources.

The C2C© program focuses on helping clients to better understand and manage epilepsy. When entering the C2C© program, a person with epilepsy and their family will meet with a trained epilepsy educator who will help to explain the epilepsy diagnosis, the different seizure types, treatments options and first aid. Clients are also given a seizure log and access to resources on many different epilepsy-related topics (e.g. legal rights of employees and employers, birth control and pregnancy, co-existing disorders and quality of life, sudden unexpected death in epilepsy, driving and government programs/grants).

To date, 1063 people have received an education session. This includes 425 individuals with epilepsy and 638 family members. Among parents of children with epilepsy, 71% reported that the C2C© program made them feel less anxious about their child’s diagnosis, and 78% said the program definitely or probably helped them to manage their child’s seizures.

One of the aims of C2C© is to reduce unnecessary visits to hospital emergency departments. Many parents and teachers are unsure when a seizure is considered an emergency, which results in multiple visits to emergency rooms. After going through the C2C© program, 86% of participants reported that they were more confident in knowing when a seizure is a medical emergency. In addition, 71% of parents felt that the information they received about nighttime and water safety would help them to prevent an injury to their child during a seizure.

C2C© also provides school and community support by visiting schools and meeting with students. 74% of parents with children aged 4-12 years identified school support as their top priority. In year 2, 43% of parents took advantage of the opportunity to have a C2C© educator speak to their child’s class.

The evidence to date suggests that a community-based educational and support program can reduce anxiety, improve self-management skills, prevent unnecessary visits to the emergency department and help people with epilepsy to better manage their condition. The C2C© program is currently offered to individuals and families who live in the Southwest and Erie St. Clair local health integration networks (LHIN) and through Epilepsy South Central Ontario. In the near future, C2C© will also be offered through other local community epilepsy agencies, including Epilepsy Toronto, Epilepsy Ottawa, and Epilepsy Durham Region.

To view the final report of the C2C© program go here.

Researcher(s): ,
Institution(s): ,
Status: Recruiting

If you are interested in being a part of this study, please contact us.

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