Exploring the needs and challenges of parents and their children in childhood epilepsy care: A qualitative study

Area of Science:

• Pediatric Neurology
• Child Psychology
• Family Medicine

Background:

• Epilepsy necessitates long-term medication due to unpredictable seizure recurrence.
• The chronic nature of epilepsy profoundly affects children with epilepsy (CWE) and their families.
• Understanding the unique needs and challenges faced by CWE and their parents is crucial for comprehensive care.

Purpose of the Study:

• To explore the lived experiences, needs, and challenges of parents and their children with epilepsy (CWE).
• To identify specific concerns and requirements from both parental and child perspectives.
• To compare parental and child viewpoints on the impact of epilepsy on daily life and future outlook.

Main Methods:

• Conducted in-depth interviews (IDIs) with 15 families, including 12 mothers, 3 fathers, and 15 CWE (aged 8-18).
• Transcribed interview data verbatim for detailed analysis.
• Employed thematic analysis using a descriptive phenomenology approach to understand participants' experiences.

Main Results:

• Experiences were categorized into 'first seizure' and 'growing up with epilepsy'.
• Parental concerns focused on physical health, psychological well-being, academics, and future prospects.
• Children's concerns included restrictions, peer relationships, and future independence; parents desired information, continuity of care, and support groups, while children prioritized autonomy.

Conclusions:

• Parents and CWE shared similar views on physical functioning and academic achievement.
• Discrepancies emerged in perceptions of emotional impact, behavior, and peer relationships.
• Addressing the distinct needs for information, support, and independence is vital for improving the quality of life for CWE and their families.