Children's understanding of epilepsy: A qualitative study

Area of Science:

• Pediatric Neurology
• Child Psychology
• Qualitative Research Methods

Background:

• Understanding children's perspectives on epilepsy is vital for tailored care.
• Previous research may overlook direct child input, relying on parental proxy.

Purpose of the Study:

• To explore children's understanding of epilepsy and its treatment.
• To identify how children learn about their condition and medication.

Main Methods:

• Qualitative approach using semi-structured interviews with children (aged 7-16) with epilepsy.
• Incorporated observation of epilepsy clinic appointments and participatory tools.
• Thematic analysis of transcribed interview data.

Main Results:

• Children's understanding of epilepsy is often linked to seizure sensations and medication routines.
• Participants reported challenges in actively participating in clinical appointments.
• Parental information sources were more significant than healthcare professionals for children's understanding.

Conclusions:

• Directly eliciting children's views on epilepsy is essential, not relying solely on parents.
• Clinicians must be aware of and responsive to children's unique understanding and communication styles.
• A participatory-informed animation was developed to support children's epilepsy education.