Associate Professor Pediatrics & Neurology; Specialist: Fetal & Neonatal Neurology Cincinnati Children's Hospital Medical Center Cincinnati, Ohio, United States
Background: Families of children with chronic health conditions face threats to parent well-being and family functioning. About half of parents whose infants survive acute provoked neonatal seizures experience significant symptoms of anxiety and depression upon neonatal hospital discharge. These symptoms often persist at least until children reach age 24 months. The impact of neonatal seizures on long-term parent/family well-being after 24 months is unknown. Objective: To describe parent/family well-being when children with neonatal seizures reach 3-8 years of age. Design/Methods: In this prospective, multi-center cohort study from the US, one parent per family of all surviving Neonatal Seizure Registry (NSR)-II infants were invited to enroll and complete validated surveys annually when their children were between the age of 3 to 8 years. Factor analysis revealed 3 summary scales: 1) parent well-being (anxiety, depression and quality of life); 2) parent post-traumatic stress, and 3) impact on the family. We used mixed model regression with random intercepts for each child to accommodate the repeated measures. We retained potential predictors with p< 0.10. These predictors were included in multivariable analyses. Results: Parents of 165 children participated (Table 1). Parent and family well-being over time is shown in Table 2. Between 8-35% of parents experienced mental health symptoms of anxiety, depression or post-traumatic stress when children were 3-8 years of age. Adjusting for timepoint, study site, and parent respondent, only child functional impairment at 24 months corrected age was associated with parents’ well-being. No factors were associated with post-traumatic stress symptoms. Several factors were associated with impact on the family: 1) child functional impairment at 24 months, 2) child receiving special services at 24 months, 3) child receiving special services currently, and 4) low adaptive behavior scores of the child (Figure 1).
Conclusion(s): The impact of neonatal seizures on parents and families is long-lasting. For survivors of neonatal seizures, assessing parent and family well-being along with child neurodevelopment at 24 months is critical to implement prevention strategies and support services. Periodic screening of parental well-being and family function during the preschool and school age years is indicated for early detection and referral to treatment services. The absence of specific risk factors for symptoms of PTSD underscores the need for universal screening in this population.