Associations between Infant and Parent Characteristics and Measures of Family Well-Being in Neonates with Seizures: A Cohort Study

Linda S Franck; Renée A Shellhaas; Monica Lemmon; Julie Sturza; 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; Katie Grant; Lisa Grossbauer; Kamil Pawlowski; Hannah C Glass; Neonatal Seizure Registry study group

doi:10.1016/j.jpeds.2020.02.024

Associations between Infant and Parent Characteristics and Measures of Family Well-Being in Neonates with Seizures: A Cohort Study

J Pediatr. 2020 Jun:221:64-71.e4. doi: 10.1016/j.jpeds.2020.02.024.

Authors

Linda S Franck¹, Renée A Shellhaas², Monica Lemmon³, Julie Sturza², Janet S Soul⁴, Taeun Chang⁵, Courtney J Wusthoff⁶, Catherine J Chu⁷, Shavonne L Massey⁸, Nicholas S Abend⁹, Cameron Thomas¹⁰, Elizabeth E Rogers¹¹, Charles E McCulloch¹², Katie Grant¹³, Lisa Grossbauer¹⁴, Kamil Pawlowski¹⁵, Hannah C Glass¹⁶; Neonatal Seizure Registry study group

Collaborators

Neonatal Seizure Registry study group:
Ronnie Guillet, Marty Barnes, Tammy Tsuchida, Adam Numis, M Roberta Cilio, Sonia L Bonifacio

Affiliations

¹ Department of Family Health Care Nursing, University of California San Francisco, San Francisco, CA. Electronic address: linda.franck@ucsf.edu.
² Department of Pediatrics, University of Michigan, Ann Arbor, MI.
³ Division of Pediatric Neurology and Developmental Medicine, Department of Pediatrics, Duke University School of Medicine, Durham, NC.
⁴ Department of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, MA.
⁵ Department of Neurology, Children's National Hospital, George Washington University School of Medicine and Health Sciences, Washington, DC.
⁶ Departments of Neurology and Pediatrics, Stanford University, Palo Alto, CA.
⁷ Department of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MA.
⁸ Departments of Neurology and Pediatrics, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA.
⁹ Departments of Neurology and Pediatrics, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA; Departments of Anesthesia and Critical Care Medicine, Children's Hospital of Philadelphia and Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA.
¹⁰ Department of Pediatrics, University of Cincinnati, Cincinnati, OH; Division of Neurology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
¹¹ Department of Pediatrics, UCSF Benioff Children's Hospital, University of California San Francisco, San Francisco, CA.
¹² Department of Epidemiology and Biostatistics, University of California San Francisco, San Francisco, CA.
¹³ NSR Parent Partner, Cincinnati Children's Hospital Medical Center, Cincinnati, OH.
¹⁴ NSR Parent Partner, Children's Hospital of Philadelphia, Philadelphia, PA.
¹⁵ NSR Parent Partner, UCSF Benioff Children's Hospital, San Francisco, CA.
¹⁶ Departments of Neurology and Pediatrics, UCSF Benioff Children's Hospital, University of California San Francisco, San Francisco, CA.

Abstract

Objective: To characterize and determine risk factors for key dimensions of well-being at hospital discharge in families of neonates with acute symptomatic seizures.

Study design: This prospective, observational cohort study enrolled 144 parent-infant dyads among neonates with acute symptomatic seizures from 9 pediatric hospitals in the Neonatal Seizure Registry. One parent per family completed a discharge survey, which included measures of anxiety and depression, health-related quality of life, and impact on the family. Multivariable regression analyses adjusted for site were constructed to examine parent and infant characteristics associated with well-being.

Results: At discharge, 54% of parents reported symptoms of anxiety and 32% reported symptoms of depression. Parents of infants with hypoxic-ischemic encephalopathy reported more depression and worse quality of life than parents of infants with other seizure etiologies. Parental quality of life was also lower with greater infant age at discharge. A higher level of maternal education was associated with greater impact on the family. All these differences were medium to large effect sizes, ranging from 0.52 to 0.78.

Conclusions: Symptoms of anxiety and depression are common in parents of infants with neonatal seizures, and several parent and infant characteristics are associated with poorer parental quality of life and family well-being. These findings are a call to action to improve mental health screening and services for parents of infants with neonatal seizures.

Trial registration: ClinicalTrials.gov NCT02789176.

Keywords: anxiety; depression; family impact; hypoxic-ischemic encephalopathy; intracranial hemorrhage; perinatal ischemic stroke; quality of life.

Publication types

Multicenter Study
Observational Study
Research Support, Non-U.S. Gov't

MeSH terms

Acute Disease
Anxiety / epidemiology*
Cohort Studies
Depression / epidemiology*
Family Health*
Female
Humans
Infant, Newborn
Male
Parents / psychology*
Patient Discharge
Prospective Studies
Quality of Life*
Risk Factors
Seizures*

Associated data

ClinicalTrials.gov/NCT02789176

Abstract

Publication types

MeSH terms

Associated data

Grants and funding