Parent and Family Well-Being and Associated Risk Factors as Children with Neonatal Seizures Reach Preschool and School-Age: A Longitudinal Cohort Study

Objective: To assess parent/family well-being when children with neonatal seizures reach 3-8 years of age and examine factors associated with parent/family well-being. Methods: One parent per surviving infant in the Neonatal Seizure Registry-II was invited to complete validated surveys annually when children were between 3 and 8 years of age. Three outcomes were examined: (1) parent well-being (anxiety, depression, and quality of life); (2) parent post-traumatic stress symptoms; and (3) impact on the family. We used mixed model regression with random intercepts and guided backward elimination and included potential predictors that had bivariate associations P < .10 in the multivariable analyses. Results: Among 169 parents, 8%-35% experienced symptoms of anxiety, depression, or post-traumatic stress. When children were 8 years of age, about 1 in 3 parents had moderate to severe anxiety symptoms, approximately double the general population, 1 in 5 had post-traumatic stress disorder symptoms and depression symptom frequency was similar to the general population in the final models, only child social communication impairment was associated with poorer parental well-being or post-traumatic stress symptoms. Several child factors, including age at discharge from the neonatal admission, functional impairment at 24 months, social communication impairment, and receiving special services, were associated with greater impact on the family. Conclusions: Child social and functional health challenges following neonatal seizures were associated with poorer parent and family well-being across the preschool and early school years. Longitudinal screening of child social functioning, parent well-being, and family function is indicated for early detection and referral to treatment services. Trial registration: Clinical Trial Registration:NCT04337697.