Natalie K. Field BS , Linda S. Franck PhD, RN , Renée A. Shellhaas MD, MS , Hannah C. Glass MD, MAS , Kathleen A. Young BA , Saisha Dhar , Ashley Hamlett MEd , Betsy Pilon BA , Katie Means , Janet S. Soul MDCM , Shavonne L. Massey MD, MSCE , Courtney J. Wusthoff MD , Catherine J. Chu MD, MSC , Cameron Thomas MD, MS , Elizabeth Rogers MD , Madison M. Berl PhD , Giulia M. Benedetti MD , Tayyba Anwar MD , Monica E. Lemmon MD , Neonatal Seizure Registry
{"title":"新生儿癫痫发作后的生活:描述父母的纵向经历","authors":"Natalie K. Field BS , Linda S. Franck PhD, RN , Renée A. Shellhaas MD, MS , Hannah C. Glass MD, MAS , Kathleen A. Young BA , Saisha Dhar , Ashley Hamlett MEd , Betsy Pilon BA , Katie Means , Janet S. Soul MDCM , Shavonne L. Massey MD, MSCE , Courtney J. Wusthoff MD , Catherine J. Chu MD, MSC , Cameron Thomas MD, MS , Elizabeth Rogers MD , Madison M. Berl PhD , Giulia M. Benedetti MD , Tayyba Anwar MD , Monica E. Lemmon MD , Neonatal Seizure Registry","doi":"10.1016/j.pediatrneurol.2024.08.007","DOIUrl":null,"url":null,"abstract":"<div><h3>Background</h3><div>Parents of neonates with seizures report persistent symptoms of depression, anxiety, and posttraumatic stress. We aimed to characterize the parent experience of caring for children impacted by neonatal seizures, including longitudinal assessment across childhood.</div></div><div><h3>Methods</h3><div>This prospective, observational, multicenter study was conducted at Neonatal Seizure Registry (<em>NSR</em>) sites in partnership with the <em>NSR</em> Parent Advisory Panel. Parents completed surveys at discharge; 12, 18, and 24 months; and 3, 4, 5, 7, and 8 years. Surveys included demographic information and open-ended questions targeting parent experience. A conventional content analysis approach was used.</div></div><div><h3>Results</h3><div>A total of 320 caregivers completed at least one open-ended question, with the majority of respondents at discharge (<em>n</em> = 142), 12 months (<em>n</em> = 169), 18 months <em>(n</em> = 208), and 24 months (<em>n</em> = 245). We identified the following three primary themes. (1) Personal Burden of Care: Parents experienced emotional distress, financial strain, physical demands, and fears for their child's unknown outcome; (2) Managing Day-to-Day Life: Parents described difficulties navigating their parenting role, including managing their child's challenging behaviors and understanding their child's needs amid neurodevelopmental impairment; (3) My Joys as a Parent: Parents valued bonding with their child, being a caregiver, and watching their child's personality grow.</div></div><div><h3>Conclusions</h3><div>Parents of children impacted by neonatal seizures face persistent challenges, which are interwoven with the joys of being a parent. Our findings suggest that future interventions should promote resiliency, address caregivers’ psychosocial needs longitudinally, and provide enhanced support for parents caring for children with medical complexity.</div></div>","PeriodicalId":19956,"journal":{"name":"Pediatric neurology","volume":"161 ","pages":"Pages 76-83"},"PeriodicalIF":3.2000,"publicationDate":"2024-09-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Life After Neonatal Seizures: Characterizing the Longitudinal Parent Experience\",\"authors\":\"Natalie K. Field BS , Linda S. Franck PhD, RN , Renée A. Shellhaas MD, MS , Hannah C. Glass MD, MAS , Kathleen A. Young BA , Saisha Dhar , Ashley Hamlett MEd , Betsy Pilon BA , Katie Means , Janet S. Soul MDCM , Shavonne L. Massey MD, MSCE , Courtney J. Wusthoff MD , Catherine J. Chu MD, MSC , Cameron Thomas MD, MS , Elizabeth Rogers MD , Madison M. Berl PhD , Giulia M. Benedetti MD , Tayyba Anwar MD , Monica E. Lemmon MD , Neonatal Seizure Registry\",\"doi\":\"10.1016/j.pediatrneurol.2024.08.007\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Background</h3><div>Parents of neonates with seizures report persistent symptoms of depression, anxiety, and posttraumatic stress. We aimed to characterize the parent experience of caring for children impacted by neonatal seizures, including longitudinal assessment across childhood.</div></div><div><h3>Methods</h3><div>This prospective, observational, multicenter study was conducted at Neonatal Seizure Registry (<em>NSR</em>) sites in partnership with the <em>NSR</em> Parent Advisory Panel. Parents completed surveys at discharge; 12, 18, and 24 months; and 3, 4, 5, 7, and 8 years. Surveys included demographic information and open-ended questions targeting parent experience. A conventional content analysis approach was used.</div></div><div><h3>Results</h3><div>A total of 320 caregivers completed at least one open-ended question, with the majority of respondents at discharge (<em>n</em> = 142), 12 months (<em>n</em> = 169), 18 months <em>(n</em> = 208), and 24 months (<em>n</em> = 245). We identified the following three primary themes. (1) Personal Burden of Care: Parents experienced emotional distress, financial strain, physical demands, and fears for their child's unknown outcome; (2) Managing Day-to-Day Life: Parents described difficulties navigating their parenting role, including managing their child's challenging behaviors and understanding their child's needs amid neurodevelopmental impairment; (3) My Joys as a Parent: Parents valued bonding with their child, being a caregiver, and watching their child's personality grow.</div></div><div><h3>Conclusions</h3><div>Parents of children impacted by neonatal seizures face persistent challenges, which are interwoven with the joys of being a parent. Our findings suggest that future interventions should promote resiliency, address caregivers’ psychosocial needs longitudinally, and provide enhanced support for parents caring for children with medical complexity.</div></div>\",\"PeriodicalId\":19956,\"journal\":{\"name\":\"Pediatric neurology\",\"volume\":\"161 \",\"pages\":\"Pages 76-83\"},\"PeriodicalIF\":3.2000,\"publicationDate\":\"2024-09-07\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Pediatric neurology\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://www.sciencedirect.com/science/article/pii/S0887899424003023\",\"RegionNum\":3,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"CLINICAL NEUROLOGY\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Pediatric neurology","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S0887899424003023","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"CLINICAL NEUROLOGY","Score":null,"Total":0}
Life After Neonatal Seizures: Characterizing the Longitudinal Parent Experience
Background
Parents of neonates with seizures report persistent symptoms of depression, anxiety, and posttraumatic stress. We aimed to characterize the parent experience of caring for children impacted by neonatal seizures, including longitudinal assessment across childhood.
Methods
This prospective, observational, multicenter study was conducted at Neonatal Seizure Registry (NSR) sites in partnership with the NSR Parent Advisory Panel. Parents completed surveys at discharge; 12, 18, and 24 months; and 3, 4, 5, 7, and 8 years. Surveys included demographic information and open-ended questions targeting parent experience. A conventional content analysis approach was used.
Results
A total of 320 caregivers completed at least one open-ended question, with the majority of respondents at discharge (n = 142), 12 months (n = 169), 18 months (n = 208), and 24 months (n = 245). We identified the following three primary themes. (1) Personal Burden of Care: Parents experienced emotional distress, financial strain, physical demands, and fears for their child's unknown outcome; (2) Managing Day-to-Day Life: Parents described difficulties navigating their parenting role, including managing their child's challenging behaviors and understanding their child's needs amid neurodevelopmental impairment; (3) My Joys as a Parent: Parents valued bonding with their child, being a caregiver, and watching their child's personality grow.
Conclusions
Parents of children impacted by neonatal seizures face persistent challenges, which are interwoven with the joys of being a parent. Our findings suggest that future interventions should promote resiliency, address caregivers’ psychosocial needs longitudinally, and provide enhanced support for parents caring for children with medical complexity.
期刊介绍:
Pediatric Neurology publishes timely peer-reviewed clinical and research articles covering all aspects of the developing nervous system.
Pediatric Neurology features up-to-the-minute publication of the latest advances in the diagnosis, management, and treatment of pediatric neurologic disorders. The journal''s editor, E. Steve Roach, in conjunction with the team of Associate Editors, heads an internationally recognized editorial board, ensuring the most authoritative and extensive coverage of the field. Among the topics covered are: epilepsy, mitochondrial diseases, congenital malformations, chromosomopathies, peripheral neuropathies, perinatal and childhood stroke, cerebral palsy, as well as other diseases affecting the developing nervous system.