Parent and Child

Anne Hagemann, Margarete Pfäfflin, Fridtjof W. Nussbeck, Theodor W. May, Epilepsy & Behavior 2016; 64:143-151.


Living with and managing epilepsy in children requires education for parents that addresses medical and psychosocial issues. Parent knowledge and coping may influence a child’s behavior, autonomy, and psychosocial function.

This study tested the effectiveness of an educational program (FAMOSES) given in multiple places. FAMOSES is an educational program used in outpatient clinicis in Germany, Austria, and Switzerland.

Modules for children with epilepsy from 7 to 12 years old and modules for parents covering similar topics are available.

Description of Study

This study followed two groups of parents of children with epilepsy over a 6-month-period from 19 different epilepsy centers in Germany and Austria. One group of parents attended the FAMOSES education program and the other group did not.

  • 159 parents were in the education group and 86 parents in the control group.
  • Both groups of parents completed survey questions in the beginning of the study and 6 months later.
  • The study was not randomized, which means that parents who wanted to join the FAMOSES group were able to do this.
  • The control group of parents who did not join the educational program were matched on a number of criteria to be similar to parents in the study group.
  • The main outcomes of the study sought to see if the education program for parents of children with epilepsy improved epilepsy-specific knowledge, parental coping with epilepsy, and encouragement of the chid’s autonomy or independence.
  • Other factors studied included: fears related to epilepsy, seeking and sharing information, managing seizures, talking with the child about epilepsy, and the impact on family.

A summary of Study Findings

  • Epilepsy-specific knowledge and coping significantly improved for parents participating in the education program and not for those in the control group.
  • Parents’ encouragement of their child’s autonomy did not change significantly over time.
  • Parents who were in the education group also reported fewer fears related to their child’s epilepsy and talking about epilepsy with their child improved.

What does this mean?

  • A structured and interactive educational program for parents of children with epilepsy can be very helpful to improve knowledge, coping, and fears of parents.
  • Further studies will be helpful to look at the impact of education programs on other self-management behaviors and seizure outcomes.

Article published in Epilepsy & Behavior, November 2016.

Authored By: 
Patty Obsorne Shafer RN, MN
Authored Date: 
Reviewed By: 
Joseph I. Sirven MD
Tuesday, November 29, 2016