Life After Neonatal Seizures: Characterizing the Longitudinal Parent Experience

Area of Science:

• Pediatric Neurology
• Neonatal Care
• Parental Mental Health

Background:

• Neonatal seizures significantly impact parental mental health, leading to persistent depression, anxiety, and PTSD.
• Understanding the long-term parental experience is crucial for developing effective support systems.

Purpose of the Study:

• To characterize the multifaceted experiences of parents caring for children affected by neonatal seizures.
• To conduct a longitudinal assessment of parental experiences from infancy through early childhood.

Main Methods:

• Prospective, observational, multicenter study involving the Neonatal Seizure Registry (NSR).
• Parents completed surveys at multiple time points: discharge, 12, 18, 24 months, and 3, 4, 5, 7, 8 years.
• Conventional content analysis of open-ended survey responses from 320 caregivers.

Main Results:

• Three primary themes emerged: Personal Burden of Care (emotional distress, financial strain, fear), Managing Day-to-Day Life (parenting challenges, understanding needs), and Parental Joys (bonding, caregiving, child's growth).
• Parents reported persistent challenges interwoven with positive experiences of parenthood.

Conclusions:

• Parents of children with neonatal seizures experience enduring difficulties alongside the joys of parenting.
• Future interventions should focus on promoting resilience, addressing longitudinal psychosocial needs, and supporting parents of children with medical complexity.