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Toolkit for Families of Children with Epilepsy

Video introduction by Elizabeth Aquino, Parent Chair for Epilepsy, Improving Systems of Care Learning Collaborative


Download the transcript of this video.


Introduction to the Toolkit


As family members of children with epilepsy who are asked to be a part of systemic quality improvement, we bring a skill set and perspective that no one else can provide. At the end of the day, if the system is not working for the ‘end-user’ families, then the system that has been built cannot be successful. The important work that you are doing will help to ensure that the next family who begins their journey will have the necessary supports and services so that they can be meaningfully engaged in the process.

As a family leader, you will be involved in establishing priorities for improvement, planning tests of change, and helping monitor progress in your state system. Your participation at this level will help to maintain a sense of urgency and keep the focus on matters of true importance, given that the definition of quality specifies that the critical outcomes are those that are important to patients and their families

This toolkit provides different resources and tips that can assist you in your work. For example, there is a parent involvement guide that includes some examples of other family members who have done QI work that you can learn from. There is information and support about the theory of “Quality Improvement,” and even an acronym chart that can help you ground yourself in this endeavor.

As the parent faculty chair in the Improving Systems of Care epilepsy learning collaborative, I am here to assist you in your work. You will find a network of other family members that you can build a relationship with, and I know that you will be bringing a great amount of experience and expertise that will assist others as well.

So, again, welcome, and we look forward to supporting your efforts.

Elizabeth Aquino


The Epilepsy Family Toolkit:

Tool 1: Seizure Action Plan

Tool 2: Medication List/Wallet Card

Tool 3: Pictorial Descriptions of Seizures

Tool 4: All About Me

Tool 5: Care Notebook

Tool 6: Local Community Resources 



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