Abstracts

Rationale: Children with intractable epilepsy are at increased risk of experiencing social, emotional and behavioural difficulties. The stigma and misunderstanding of epilepsy, peer difficulties including bullying and teasing and anxiety related to the unpredictability of seizures are some of the factors that can contribute to social exclusion, poor quality of life and low self esteem. Providing children with an opporutnity to make sense of their epilepsy and explore the impact of seizures in their lives is vitally important. Finding ways to assist children in expressing feelings related to seizures can offer an outlet for children as well as offer the opportunity for others to develop a better understanding of epilepsy. Methods: As part of clinical social work services provided to patients with intractable epilepsy at the Hospital for Sick Children a psycho-social educational group was offered to children within an epilepsy classroom setting. A 6-8 week therapeutic group was established using art work, group discussion, bibliotherapy (use of books about epilepsy to increase awareness and explore feelings), role play and education. A key component of the group included Body Mapping (medical art therapy combined with children's narratives) to allow children the opportunity to draw their experiences of seizures and tell their stories. Results: Seizure descriptions were obtained from 32 children - 16 girls and 16 boys - aged 6-13 years. Body mapping drawings were completed by 28 of these children. Children described both (1) physical feelings and (2) emotional feelings related to their seizures. Descriptions included feelings of fear, sadness, "invasion", disconnection, pain, dizziness and tiredness. Conclusions: Children described verbally and through the use of drawings both physical and emotional feelings associated with their seizures. Children often described feelings of fear during a seizure and feelings of pain and exhaustion afterwards. The seizure descriptions provided by the children suggested intense internal experiences. These descriptions give a voice to the child's experience and can assist family, friends and helping professionals gain a better understanding of epilepsy. Body mapping can be used as a tool to (1) explore feelings, (2) create drawings to facilitate the sharing of the seizure experience with others and (3) engage children in conversations about their own health and quality of life. Body mapping relies on children with epilepsy being the expert about their seizures and invites them to be active participants in their own health care.