Parent experience of caring for neonates with seizures.
Parent experience of caring for neonates with seizures.
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DOI：
10.1136/archdischild-2019-318612
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发表时间：
2020-11
期刊：
影响因子：
--
通讯作者：
Neonatal Seizure Registry
中科院分区：
文献类型：
--
作者：
Lemmon M;Glass H;Shellhaas RA;Barks MC;Bailey B;Grant K;Grossbauer L;Pawlowski K;Wusthoff CJ;Chang T;Soul J;Chu CJ;Thomas C;Massey SL;Abend NS;Rogers EE;Franck LS;Neonatal Seizure Registry
癫痫发作的新生儿有很高的死亡率和神经系统疾病的风险。我们的目的是描述父母照顾癫痫发作的新生儿的经验。这项前瞻性、观察性和多中心（新生儿癫痫登记）研究招募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他们经历的开放式回答问题。使用传统的内容分析方法对答复进行了分析。144位家长完成了开放式问题（共732条评论）。确定了四个主题。力量的来源：家庭重视医疗团队的共识，为孩子的护理做出贡献的机会以及与婴儿的联系。不确定性：父母报告了三种主要类型的不确定性，所有这些都导致了痛苦：（1）每天对重症监护经历的不确定性;（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。适应家庭生活：家长表示，他们预期婴儿的情况会令他们的家庭生活有所改变，包括调整家庭的生活方式，养育子女的方法及常规。许多父母描述了由于照顾有医疗需求的孩子而带来的经济和工作挑战。情感和身体上的损失：父母报告说他们经历了焦虑、恐惧、压力、无助和失眠。癫痫发作新生儿的父母面临着挑战，因为他们适应并找到他们作为有医疗需求的孩子的父母的角色的意义。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，减少与预后不确定性相关的负担。
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 (Neonatal Seizure Registry) 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. Sources of strength: families valued medical team consensus, opportunities to contribute to their child’s care and bonding with their infant. Uncertainty: 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. Adapting family life: 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. Emotional and physical toll: 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.
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