FLIP&FLAP: Development and evaluation of a structured epilepsy education programme for children and adolescents with epilepsy and their parents

Objective: Structured health education programs for patients with chronic conditions have been established in many diagnostic groups but less so in epilepsy. To meet the health education needs of thesechildren and adolescents with epilepsy, the epilepsy study group at the Children's Hospital in Luebeck, Germany has developed and evaluated a structured training program for children 7–15 years of age and their parents.

Intervention: The program focuses on physiological, medical, and therapeutic knowledge and individual coping-strategies. Brain functioning is explained by employing the model of a computer; seizures are explained as mistakes of information proceeding between fit and strong (Flips) and somewhat weaker (Flaps) nerve cells. Other objectives of the program are to enhance children's and adolescents' responsibility for taking medication, self-esteem and quality of life, and to reduce parental worries and family burden.

Evaluation: To examine the efficacy of the FLIP&FLAP program, we performed a multi-centre non-randomized two group pre-post trial using a waiting-list control group design (N=78 intervention group, N=79 control group). Children and parents completed standardised questionnaires on epilepsy knowledge, the child's autonomy in managing their condition, self-esteem and epilepsy related quality of life, parents epilepsy-related worries, and burden on family.

Children and adolescents of the intervention group reported increased epilepsy knowledge and increased responsibility in self management of the condition, parents also reported increased epilepsy knowledge compared to the control group (medium to large effect-sizes, time by group effects p<0.001 to p<0.05). Also, children's and adolescents' self-esteem, autonomy and epilepsy related QOL increased and parents' worries and family burden on family decreased (small to medium effect sizes, time effect p<0.001 to p<0.05). However, these effects were seen in both groups and the differences between the groups were not significant.

Conclusion: The family centred FLIP&FLAP program can successfully improve children's and parents' epilepsy knowledge, child's responsibility in management of the condition and reduce parent's epilepsy-related worries. The FLIP&FLAP model may help clinicians to explain epilepsy in an age appropriate way to children and their parents.