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, 830 people have received an education session. This includes 332 individuals with epilepsy and 498 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 network (LHIN). In the near future, C2C© will also be offered through local community epilepsy agencies, including Epilepsy Toronto, Epilepsy Ottawa, Epilepsy Southcentral Ontario and Epilepsy Durham Region.

To view the full progress report for year 2 of the C2C© program you can click 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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