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...
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Elsevier
2025-06-01
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| Series: | Journal of Pediatrics: Clinical Practice |
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S2950541025000110 |
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| author | Linda S. Franck, RN, PhD Monica E. Lemmon, MD Lisa Grossbauer, PhD Kamil Pawlowski, MS Julie S. Sturza, MPH Courtney J. Wusthoff, MD, MS Shavonne L. Massey, MD, MSCE Catherine J. Chu, MD, MS Janet S. Soul, MDCM Adam L. Numis, MD Cameron Thomas, MD, MS Giulia M. Benedetti, MD Tayyba Anwar, MD Madison M. Berl, PhD Jennifer C. Gidley Larson, PhD Elizabeth E. Rogers, MD Carmen Chen, BS Charles E. McCulloch, PhD Hannah C. Glass, MDCM, MAS Renée A. Shellhaas, MD, MS |
| author_facet | Linda S. Franck, RN, PhD Monica E. Lemmon, MD Lisa Grossbauer, PhD Kamil Pawlowski, MS Julie S. Sturza, MPH Courtney J. Wusthoff, MD, MS Shavonne L. Massey, MD, MSCE Catherine J. Chu, MD, MS Janet S. Soul, MDCM Adam L. Numis, MD Cameron Thomas, MD, MS Giulia M. Benedetti, MD Tayyba Anwar, MD Madison M. Berl, PhD Jennifer C. Gidley Larson, PhD Elizabeth E. Rogers, MD Carmen Chen, BS Charles E. McCulloch, PhD Hannah C. Glass, MDCM, MAS Renée A. Shellhaas, MD, MS |
| author_sort | Linda S. Franck, RN, PhD |
| collection | DOAJ |
| description | 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. |
| format | Article |
| id | doaj-art-9e5e92e4670f49aea8b19d4b3aa1f1eb |
| institution | DOAJ |
| issn | 2950-5410 |
| language | English |
| publishDate | 2025-06-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Journal of Pediatrics: Clinical Practice |
| spelling | doaj-art-9e5e92e4670f49aea8b19d4b3aa1f1eb2025-08-20T03:21:12ZengElsevierJournal of Pediatrics: Clinical Practice2950-54102025-06-011620014910.1016/j.jpedcp.2025.200149Parent and Family Well-Being and Associated Risk Factors as Children with Neonatal Seizures Reach Preschool and School-Age: A Longitudinal Cohort StudyLinda S. Franck, RN, PhD0Monica E. Lemmon, MD1Lisa Grossbauer, PhD2Kamil Pawlowski, MS3Julie S. Sturza, MPH4Courtney J. Wusthoff, MD, MS5Shavonne L. Massey, MD, MSCE6Catherine J. Chu, MD, MS7Janet S. Soul, MDCM8Adam L. Numis, MD9Cameron Thomas, MD, MS10Giulia M. Benedetti, MD11Tayyba Anwar, MD12Madison M. Berl, PhD13Jennifer C. Gidley Larson, PhD14Elizabeth E. Rogers, MD15Carmen Chen, BS16Charles E. McCulloch, PhD17Hannah C. Glass, MDCM, MAS18Renée A. Shellhaas, MD, MS19Department of Family Health Care Nursing, University of California San Francisco, San Francisco, CA; Reprint requests: Linda S. Franck, RN, PhD, Family Health Care Nursing, University of California San Francisco, 490 Illinois St, Box 0606, San Francisco, CA 94143.Departments of Pediatrics and Population Health Sciences, Duke University, School of Medicine, Durham, NCNeonatal Seizure Registry Parent Partner, Children's Hospital of Philadelphia, Philadelphia, PANeonatal Seizure Registry Parent Partner, UCSF Benioff Children's Hospital, San Francisco, CADepartment of Pediatrics, University of Michigan, Michigan Medicine, Ann Arbor, MIDepartment of Neurology, University of California Davis, Sacramento, CADepartments of Neurology and Pediatrics, Children's Hospital of Philadelphia, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PADepartment of Neurology, Massachusetts General Hospital, Harvard Medical School, Boston, MADepartment of Neurology, Boston Children's Hospital, Harvard Medical School, Boston, MADepartment of Pediatrics, UCSF Benioff Children's Hospital, University of California San Francisco, San Francisco, CA; Department of Neurology and Weill Institute for Neuroscience, University of California San Francisco, San Francisco, CADivision of Neurology, Department of Pediatrics, University of Cincinnati, Cincinnati Children's Hospital Medical Center, Cincinnati, OHDivision of Pediatric Neurology, Department of Pediatrics, C.S. Mott Children's Hospital and the University of Michigan, Ann Arbor, MIDivision of Neurology, Children's National Hospital, Washington, DCDivision of Neuropsychology, Children's National Hospital, Washington, DCDivision of Rehabilitation Psychology Neuropsychology, Department of Physical Medicine and Rehabilitation, University of Michigan, Ann Arbor, MIDepartment of Pediatrics, UCSF Benioff Children's Hospital, University of California San Francisco, San Francisco, CADepartment of Pediatrics, UCSF Benioff Children's Hospital, University of California San Francisco, San Francisco, CADepartment of Epidemiology & Biostatistics, University of California San Francisco, San Francisco, CADepartment of Pediatrics, UCSF Benioff Children's Hospital, University of California San Francisco, San Francisco, CA; Department of Neurology and Weill Institute for Neuroscience, University of California San Francisco, San Francisco, CA; Department of Epidemiology & Biostatistics, University of California San Francisco, San Francisco, CADivision of Pediatric Neurology, Department of Neurology, Washington University in St. Louis, St. Louis, MOObjective: 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.http://www.sciencedirect.com/science/article/pii/S2950541025000110parent mental healthimpact on familyneonatal seizuresburden of carepediatricsneurology |
| spellingShingle | Linda S. Franck, RN, PhD Monica E. Lemmon, MD Lisa Grossbauer, PhD Kamil Pawlowski, MS Julie S. Sturza, MPH Courtney J. Wusthoff, MD, MS Shavonne L. Massey, MD, MSCE Catherine J. Chu, MD, MS Janet S. Soul, MDCM Adam L. Numis, MD Cameron Thomas, MD, MS Giulia M. Benedetti, MD Tayyba Anwar, MD Madison M. Berl, PhD Jennifer C. Gidley Larson, PhD Elizabeth E. Rogers, MD Carmen Chen, BS Charles E. McCulloch, PhD Hannah C. Glass, MDCM, MAS Renée A. Shellhaas, MD, MS Parent and Family Well-Being and Associated Risk Factors as Children with Neonatal Seizures Reach Preschool and School-Age: A Longitudinal Cohort Study Journal of Pediatrics: Clinical Practice parent mental health impact on family neonatal seizures burden of care pediatrics neurology |
| title | Parent and Family Well-Being and Associated Risk Factors as Children with Neonatal Seizures Reach Preschool and School-Age: A Longitudinal Cohort Study |
| title_full | Parent and Family Well-Being and Associated Risk Factors as Children with Neonatal Seizures Reach Preschool and School-Age: A Longitudinal Cohort Study |
| title_fullStr | Parent and Family Well-Being and Associated Risk Factors as Children with Neonatal Seizures Reach Preschool and School-Age: A Longitudinal Cohort Study |
| title_full_unstemmed | Parent and Family Well-Being and Associated Risk Factors as Children with Neonatal Seizures Reach Preschool and School-Age: A Longitudinal Cohort Study |
| title_short | Parent and Family Well-Being and Associated Risk Factors as Children with Neonatal Seizures Reach Preschool and School-Age: A Longitudinal Cohort Study |
| title_sort | parent and family well being and associated risk factors as children with neonatal seizures reach preschool and school age a longitudinal cohort study |
| topic | parent mental health impact on family neonatal seizures burden of care pediatrics neurology |
| url | http://www.sciencedirect.com/science/article/pii/S2950541025000110 |
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