Abstract
Little is known about parent and family well-being after acute neonatal seizures. In thus study, we aimed to characterize parent mental health and family coping over the first two years after their child’s neonatal seizures. Parents of 303 children with acute neonatal seizures from nine pediatric hospitals completed surveys at discharge and 12-, 18- and 24-months corrected age. Outcomes included parental anxiety, depression, quality of life, impact on the family, post-traumatic stress and post-traumatic growth. We used linear mixed effect regression models and multivariate analysis to examine relationships among predictors and outcomes. At the two-year timepoint, parents reported clinically significant anxiety (31.5%), depression (11.7%) and post-traumatic stress (23.7%). Parents reported moderately high quality of life and positive personal change over time despite ongoing challenges to family coping. Families of children with longer neonatal hospitalization, functional impairment, post-neonatal epilepsy, receiving developmental support services and families of color reported poorer parental mental health and family coping. Parents of color were more likely to report symptoms of post-traumatic stress and positive personal change. Clinicians caring for children with neonatal seizures should be aware of lasting risks to parent mental health and family coping. Universal screening would enable timely referral for support services to mitigate further risk to family well-being and child development.
Highlights
If an interaction with parent or family well-being outcome was present, we reported interaction p-values and presented the results graphically by showing the effect estimates plotted versus outcome type (“interaction plots”)
In the remaining 49 cases, the respondent varied across the timepoints between mother and father or, in a few cases, another legal guardian (n = 5 infants; six time points)
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Summary
The birth of a child with a medical condition that carries a risk of death, long-term health problems, or an uncertain prognosis is an extremely stressful experience for parents [3]. Parents of infants requiring neonatal intensive care unit (NICU) hospitalization are at risk for persistent anxiety, depression, post-traumatic stress and poor quality of life, which can adversely impact the long-term health and development of the child and family [4,5]. We previously characterized the association between acute symptomatic neonatal seizures and parent and family well-being at discharge from neonatal hospitalization [6]. We found that higher maternal education, hypoxic-ischemic encephalopathy (HIE) seizure etiology and older infant age at discharge were associated with increased symptoms of anxiety and depression and worse family coping. Parental mental health and family coping beyond the neonatal period has not been characterized for families of children with neonatal seizures
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