Pediatrics and Population Health Sciences, Duke University School of Medicine, Durham, North Carolina, USA
Neurology and Pediatrics, University of California San Francisco, San Francisco, California, USA.
Arch Dis Child Fetal Neonatal Ed. 2020 Nov;105(6):634-639. doi: 10.1136/archdischild-2019-318612. Epub 2020 Jun 5.
Neonates with seizures have a high risk of mortality and neurological morbidity. We aimed to describe the experience of parents caring for neonates with seizures.
This prospective, observational and multicentre () study enrolled parents of neonates with acute symptomatic seizures. At the time of hospital discharge, parents answered six open-ended response questions that targeted their experience. Responses were analysed using a conventional content analysis approach.
144 parents completed the open-ended questions (732 total comments). Four themes were identified. : families valued medical team consensus, opportunities to contribute to their child's care and bonding with their infant. : parents reported three primary types of uncertainty, all of which caused distress: (1) the daily uncertainty of the intensive care experience; (2) concerns about their child's uncertain future and (3) lack of consensus between members of the medical team. : parents described the many ways in which they anticipated their infant's condition would lead to adaptations in their family life, including adjusting their family's lifestyle, parenting approach and routine. Many parents described financial and work challenges due to caring for a child with medical needs. : parents reported experiencing anxiety, fear, stress, helplessness and loss of sleep.
Parents of neonates with seizures face challenges as they adapt to and find meaning in their role as a parent of a child with medical needs. Future interventions should target facilitating parent involvement in clinical and developmental care, improving team consensus and reducing the burden associated with prognostic uncertainty.
患有癫痫发作的新生儿死亡率和神经发育发病率高。我们旨在描述照顾患有癫痫发作的新生儿的父母的经历。
这项前瞻性、观察性和多中心（）研究纳入了患有急性症状性癫痫发作的新生儿的父母。在出院时，父母回答了六个针对其经历的开放式问题。使用常规内容分析方法分析回复。
144 名父母完成了开放式问题（共 732 条回复）。确定了四个主题。父母看重医疗团队的共识、有机会为孩子的护理做出贡献以及与婴儿建立联系。父母报告了三种主要的不确定性，所有这些都引起了困扰：（1）重症监护体验的日常不确定性；（2）对孩子不确定的未来的担忧；（3）医疗团队成员之间缺乏共识。父母描述了他们预计婴儿的病情会导致家庭生活适应的许多方式，包括调整家庭的生活方式、育儿方法和日常生活。许多父母描述了因照顾有医疗需求的孩子而面临的经济和工作挑战。父母报告说他们经历了焦虑、恐惧、压力、无助和睡眠不足。
患有癫痫发作的新生儿的父母在适应和在作为有医疗需求的孩子的父母的角色中找到意义时面临挑战。未来的干预措施应针对促进父母参与临床和发育护理、提高团队共识以及减轻与预后不确定性相关的负担。
