Families and Caregivers

​​NATIONAL COORDINATING CENTER for EPILEPSY
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​Families and C​aregivers​

​Education of family members, teachers, and caregivers to recognize seizures and to intervene appropriately when needed is also necessary. CYE should have:

  • A seizure safety plan or a seizure action plan at school, which should be updated annually.

  • Mental health/school social services through the school for CYE and their siblings. 

  • School social services that can address and help manage comorbidities such as ADHD, depression and anxiety.

  • Pharmacologists familiar with medication interactions and drug side effects. 

Family-centered care assures the health and well-being of children and their families through a respectful family-professional partnership which honors the strengths, cultures, traditions, and expertise that everyone - but particularly the family - brings to the relationship. To be most effective, the provision of healthcare for CYE must engage all stakeholders in concert. The patient and family have a role in understanding the importance of a child’s diagnosis of epilepsy. ​

    Effects on the Family

    The challenges of pediatric epilepsy extend beyond the child or adolescent as epilepsy as a disease may affect the whole family. Some siblings of children with epilepsy have been shown to demonstrate negative feelings towards epilepsy, mostly anxiety or fear about seizures, and a feeling of responsibility towards their affected sibling45. Higher rates of stress and a change in family dynamics is also noted among families and caregivers45.  ​

    Engaging Families in Seizure Management

    For CYE, a mobile seizure diary can be used as a self-management tool to help individuals record, track, and manage their seizures and epilepsy. Mobile apps can also help CYE maintain their medical history, medication list and track moods.  CYE and parents can be sent prescription and medical appointment reminders47. CYE also need a seizure response plan to inform others when there is an emergency situation and manage their epilepsy48.​

    Engaging Families in Quality Improvement

    The National Center for Medical Home Implementation conducted a nationwide family engagement quality improvement project to enhance family engagement in the pediatric medical home. As a result of this project, a Web-based implementation guide has been developed. This guide provides tools and resources needed for implementing family engagement quality improvement projects in clinical practice or through multi-site learning collaboratives. Examples of resources included within the implementation guide include the following: 

    • sample Institutional Review Board applications

    • quality improvement change package 

    • data collection instruments

    Lessons learned from the project are shared throughout the guide and support those interested in implementing a similar project. Supporting documentation is available for individuals, organizations, or practices interested in applying for Maintenance of Certification Part 4 for a project on family engagement. All resources are customizable, modifiable and free to download.​

​​For more information and resources about family engagement, download our Epilepsy Compendium. 

References for this page can be found here​. ​


​The Coordinating Center is a cooperative agreement between the Maternal and Child Health Bureau (MCHB) and the American Academy of Pediatrics (AAP) to establish a multifaceted community-based system of care that ensures that Children and Youth with Epilepsy (CYE) have access to the medical, social, and other supports and services that they require to achieve optimal health outcomes and improved quality of life. This Web site is funded by the US Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA).​
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