Toolkit for Providers Serving Children with Epilepsy
Help Families Find Local Community Resources
What We Learned
• Families of children with epilepsy report that they are often, at least initially, unaware of the resources in the community that might be available to them.
• Families are sometimes not directed to the most appropriate resources.
• Families sometimes find out about resources piecemeal, losing time, money and even potentially developmental progress for their child.
• Community-based organizations and family peer groups can be an excellent resource for support and practical information for families resulting in more informed families and improved family-provider relationships
What We Did
• Worked with state Title V leaders and with providers to explore ways to make lists of local resources available to families in a format that is meaningful to them.
Questions for My Practice
• Do we guide families towards local resources when a diagnosis of epilepsy is first made?
• Do we provide a list of local resources to families?
Changes to Try in My Practice
• Create a list of local resources likely to be useful for families with epilepsy and ensure the list is given to the family, preferably at the first visit. Here are some helpful resources to consider:
• Explore web-based resources that have been designed by families for families. One example is the Hopeful Parents Blog.
• Find out if Title V leaders in your state have resource lists available for families – either paper or web-based.
• Ask families if they find resource lists useful, or if they know of local resources that might benefit other families of children with epilepsy.
• Ask families what resources they have found helpful and make that information available to all families in your practice.
• Enlist interested families in collecting such information and keeping it up to date and available.
• Make us of the local Epilepsy Foundation as a community support and consider inviting your local representative to visit your practice.
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