Life After Neonatal Seizures: Characterizing the Longitudinal Parent Experience

IF 3.2 3区医学 Q2 CLINICAL NEUROLOGY Pediatric neurology Pub Date : 2024-09-07 DOI:10.1016/j.pediatrneurol.2024.08.007

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

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Abstract

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.

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新生儿癫痫发作后的生活：描述父母的纵向经历

背景患有癫痫发作的新生儿的父母报告了持续的抑郁、焦虑和创伤后应激症状。我们的目的是描述父母照顾受新生儿癫痫发作影响的儿童的经历，包括对儿童期的纵向评估。方法这项前瞻性、观察性、多中心研究是在新生儿癫痫发作注册中心（NSR）与 NSR 父母顾问小组合作进行的。家长在出院、12、18 和 24 个月、3、4、5、7 和 8 岁时填写了调查问卷。调查内容包括人口统计学信息和针对家长经验的开放式问题。结果共有 320 名护理人员填写了至少一个开放式问题，大多数受访者在出院时（142 人）、12 个月时（169 人）、18 个月时（208 人）和 24 个月时（245 人）填写了问卷。我们确定了以下三个主要专题。(1) 个人护理负担：家长们经历了情绪困扰、经济压力、身体需求以及对孩子未知结果的担忧；（2）日常生活管理：家长们描述了他们在扮演养育者角色时遇到的困难，包括管理孩子的挑战性行为和了解孩子在神经发育障碍中的需求；（3）我作为家长的快乐：结论受新生儿癫痫发作影响的儿童的父母面临着持续的挑战，这些挑战与为人父母的喜悦交织在一起。我们的研究结果表明，未来的干预措施应促进恢复能力，纵向解决照顾者的社会心理需求，并为照顾病情复杂儿童的父母提供更多支持。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Pediatric neurology 医学-临床神经学

CiteScore

4.80

自引率

2.60%

发文量

176

审稿时长

78 days

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.