Hauch Holger, El Mohaui Naual, Vaillant Vera, Sander Michael, Kriwy Peter, Rohde Marius, Wolff Johannes, Berthold Daniel, Schneck Emmanuel
Palliative Care Team for Children, University Children's Hospital, Giessen, Hesse, Germany.
University Children's Hospital Giessen, Department of Pediatric Oncology, Giessen, Hesse, Germany.
Front Pediatr. 2023 Feb 14;11:1104655. doi: 10.3389/fped.2023.1104655. eCollection 2023.
The prevalence of children with life-limiting conditions is rising, and since the amendment of the social insurance code in Germany, palliative home care teams have treated an increasing number of children. These teams provide 24/7 readiness, yet some parents still call the general emergency medical service (EMS) for various reasons. EMS is exposed to complex medical problems in rare diseases. Questions arose about the experiences of EMS and whether they felt prepared for emergencies involving children treated by a palliative care team.
This study used a mixed methods approach to focus on the interface between palliative care and EMS. First, open interviews were conducted, and a questionnaire was developed based on the results. The variables included demographic items and individual experiences with patients. Second, a case report of a child with respiratory insufficiency was presented to assess the spontaneous treatment intentions of EMS providers. Finally, the need, relevant topics, and duration of specific training in palliative care for EMS providers were evaluated.
In total, 1,005 EMS providers responded to the questionnaire. The average age was 34.5 years (±10.94SD), 74.6% were male. The average work experience was 11.8 years (±9.7), 21.4% were medical doctors. Experience with a call of a life-threatening emergency involving a child was reported by 61.5% and severe psychological distress during such a call was reported by 60.4%. The equivalent distress frequency for adult patient calls was 38.3%. ( < 0.001). After review of the case report, the EMS respondents suggested invasive treatment options and rapid transport to the hospital. Most (93.7%) respondents welcomed the consideration of special training in pediatric palliative care. This training should include basic information about palliative care, an analysis of cases involving palliatively treated children, an ethical perspective, practical recommendations, and available (24/7) local contact for further guidance and support.
Emergencies in pediatric palliatively treated patients were more common than expected. EMS providers perceived the situations as stressful, and there is a need for specific training with practical aspects.
患有危及生命疾病的儿童数量正在增加，自德国社会保险法修订以来，姑息家庭护理团队治疗的儿童数量不断增加。这些团队随时待命，但仍有一些家长因各种原因拨打紧急医疗服务（EMS）电话。EMS会遇到罕见疾病中的复杂医疗问题。人们对EMS的经历以及他们是否为涉及姑息治疗团队治疗的儿童的紧急情况做好准备产生了疑问。
本研究采用混合方法聚焦于姑息治疗与EMS之间的接口。首先，进行开放式访谈，并根据结果制定问卷。变量包括人口统计学项目和与患者的个人经历。其次，呈现一名呼吸功能不全儿童的病例报告，以评估EMS提供者的自发治疗意图。最后，评估EMS提供者对姑息治疗特定培训的需求、相关主题和持续时间。
共有1005名EMS提供者回复了问卷。平均年龄为34.5岁（±10.94标准差），74.6%为男性。平均工作经验为11.8年（±9.7），21.4%为医生。61.5%的人报告有涉及儿童的危及生命紧急情况呼叫经历，60.4%的人报告在这种呼叫期间有严重心理困扰。成人患者呼叫的同等困扰频率为38.3%。（P<0.001）。在审查病例报告后，EMS受访者建议采取侵入性治疗方案并迅速送往医院。大多数（93.7%）受访者欢迎考虑开展儿科姑息治疗专项培训。该培训应包括姑息治疗的基本信息、对涉及接受姑息治疗儿童的病例分析、伦理视角、实用建议以及提供（全天候）当地联系方式以获取进一步指导和支持。
接受姑息治疗的儿科患者的紧急情况比预期更常见。EMS提供者认为这些情况压力很大，需要进行具有实际操作内容的特定培训。
