Parent Mental Health and Family Coping over Two Years after the Birth of a Child with Acute Neonatal Seizures
Linda S. Franck,
Renée A. Shellhaas,
Monica E. Lemmon,
Julie Sturza,
Marty Barnes,
Trisha Brogi,
Elizabeth Hill,
Katrina Moline,
Janet S. Soul,
Taeun Chang,
Courtney J. Wusthoff,
Catherine J. Chu,
Shavonne L. Massey,
Nicholas S. Abend,
Cameron Thomas,
Elizabeth E. Rogers,
Charles E. McCulloch,
Hannah C. Glass
Affiliations
Linda S. Franck
Department of Family Health Care Nursing, University of California San Francisco, San Francisco, CA 94143, USA
Renée A. Shellhaas
Department of Pediatrics, University of Michigan, Ann Arbor, MI 48109, USA
Monica E. Lemmon
Departments of Pediatrics and Population Health Sciences, Duke University School of Medicine, Durham, NC 27710, USA
Julie Sturza
Department of Pediatrics, University of Michigan, Ann Arbor, MI 48109, USA
Marty Barnes
Casey’s Circle, Austin, TX 78717, USA
Trisha Brogi
Department of Family Health Care Nursing, University of California San Francisco, San Francisco, CA 94143, USA
Elizabeth Hill
Department of Pediatrics, University of Michigan, Ann Arbor, MI 48109, USA
Katrina Moline
Hand to Hold, Austin, TX 78750, USA
Janet S. Soul
Department of Neurology, Boston Children’s Hospital, Boston, MA 02115, USA
Taeun Chang
Department of Neurology, Children’s National Hospital, Washington, DC 20010, USA
Courtney J. Wusthoff
Departments of Neurology and Pediatrics, Stanford University, Palo Alto, CA 94304, USA
Catherine J. Chu
Harvard Medical School, Boston, MA 02115, USA
Shavonne L. Massey
Departments of Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, PA 19104, USA
Nicholas S. Abend
Departments of Pediatrics, Children’s Hospital of Philadelphia, Philadelphia, PA 19104, USA
Cameron Thomas
Division of Neurology, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH 45229, USA
Elizabeth E. Rogers
Department of Pediatrics, UCSF Benioff Children’s Hospital, University of California San Francisco, San Francisco, CA 94143, USA
Charles E. McCulloch
Department of Epidemiology and Biostatistics, University of California San Francisco, San Francisco, CA 94143, USA
Hannah C. Glass
Departments of Neurology, Pediatrics, Epidemiology and Biostatistics, Weill Institute for Neuroscience, UCSF Benioff Children’s Hospital, University of California San Francisco, San Francisco, CA 94143, USA
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.
