Children's epilepsy resource for Families

Resource site:

Sharing Information about Epilepsy

 

Decisions around who to tell and when to tell others about your child’s epilepsy are not always straight forward.  On the one hand, disclosure of diagnosis, will enable others to provide valuable support and assistance to parents and will help reduce isolation.  On the other hand, it may also lead to numerous calls and questions before parents have had time to process the new information themselves.  Timing seems to be the key factor, and this will depend on the individual family. 

 

The following information may be helpful in decision making regarding sharing information about your child’s epilepsy:

  • Only talk to others about the diagnosis when you are ready to talk.
  • Consider limiting who you share the information with immediately after the diagnosis to a small number of close family or friends - this will give you an opportunity to process some of the information yourself before confronting other people’s questions and concerns.
  • Nominate a family member or friend to be the contact person for extended family and friends - they will be able to filter calls and share information in accordance with your wishes.
  • Be prepared for the fact that others may not understand the diagnosis or may have different opinions regarding treatment and management.
  • Think about what you need to say to whom and gear your information accordingly - for example, the information that your child’s school will need to know will be different to the information that you would share with grandparents and siblings.
  • Be specific about any support or assistance you require. Be precise about any care and safety requirements.
  • Focus on your child as a whole person. Your child is not the diagnosis - the language you use will help reinforce your child’s personal strengths and characteristics rather than the epilepsy and associated challenges.
  • Ensure that your child with epilepsy and any siblings have been given appropriate information about the diagnosis - they too need to be prepared for the reaction of others, and it is important that they receive information directly from the parents.

 

 

 

 

 

 

The information provided on this page has been written by members of the PENNSW Website Editorial Committee.

This page was created in March 2012 and last reviewed on October 13th 2014.