At the time of diagnosis, individuals with epilepsy and their families often have a lot of information to sort through and process. Where can families find trusted sources of information about epilepsy? Who can support them if they have follow-up questions after diagnosis?
Ms. Mary Secco has addressed the gaps in connecting people with epilepsy and their families from the first point of care – the clinic – to the community after diagnosis. The Clinic To Community© (C2C©) program provides individuals and their families with information on how to understand and better manage their epilepsy.
How does the program work? The individual with epilepsy and their family meet with a trained epilepsy educator, either in the clinic or in the community, who will help to explain the epilepsy diagnosis, the different seizure types, first aid and treatments available for epilepsy. They are also given a seizure log to assist with epilepsy management, and access to many resources discussing legal rights of employees/employers, birth control and pregnancy, co-existing disorders and quality of life, sudden unexpected death in epilepsy, driving and government programs/grants related to epilepsy.
To examine the impact of this approach, Ms. Secco will administer surveys assessing the caregiver’s knowledge of proper epilepsy care, family empowerment of managing their child’s epilepsy, and experiences of family-centeredness in the epilepsy care system in Ontario. Overall, the study will measure the benefits of connecting individuals directly to community supports and educating them about their recent diagnosis, with the hopes of bringing the C2C© approach to additional care settings in Southwestern Ontario.
*To learn more about the Clinic To Community© program, please visit www.clinictocommunity.ca.