School of Nursing & Midwifery, Trinity College Dublin University of Dublin, 24 D'Olier Street, Dublin 2, Ireland.
Institut Universitaire de Formation et de Recherche en Soins, Bureau 01/157, SV-A Secteur Vennes, Rte de la Corniche 10, CH-1010, Lausanne, Switzerland.
BMC Pediatr. 2020 Feb 15;20(1):71. doi: 10.1186/s12887-020-1979-4.
The number of children requiring long-term home ventilation has consistently increased over the last 25 years. Given the growing population of children with complex care needs (CCNs), this was an important area of focus within the Models of Child Health Appraised (MOCHA) project, funded by the European Union (EU) under the Horizon 2020 programme. We examined the structures and processes of care in place for children with CCNs and identified key constituents for effective integration of care for these children at the community and acute care interface across 30 EU/ European Economic Area (EEA) countries.
This was a non-experimental descriptive study with an embedded qualitative element. Data were collected by a Country Agent in each of the 30 countries, a local expert in child health services. Data were analysed using descriptive statistics and a thematic analysis was undertaken of the free text data provided.
A total of 27 surveys were returned from a possible 30 countries (90.0%) countries. One respondent indicated that their country does not have children on long-term ventilation (LTV) in the home, therefore, responses of 26 countries (86.7%) were analysed. None of the responding countries reported that they had all of the core components in place in their country. Three themes emerged from the free text provided: 'family preparedness for transitioning to home', 'coordinated pathway to specialist care' and 'legal and governance structures'.
While the clinical care of children on LTV in the acute sector has received considerable attention, the results identify the need for an enhanced focus on the care required following discharge to the community setting. The results highlight the need for a commitment to supporting care delivery that acknowledges the complexity of contemporary child health issues and the context of the families that become their primary care givers.
在过去的 25 年中，需要长期家庭通气的儿童数量持续增加。鉴于有复杂护理需求的儿童（CCN）的人口不断增长，这是欧盟（EU）在 Horizon 2020 计划下资助的儿童健康评估模型（MOCHA）项目的一个重要重点领域。我们研究了为 CCN 儿童提供的护理结构和流程，并确定了在社区和急性护理界面有效整合这些儿童护理的关键要素，涵盖了 30 个欧盟/欧洲经济区（EEA）国家。
这是一项非实验性描述性研究，具有嵌入式定性元素。数据由每个 30 个国家中的国家代理（每个国家的儿童健康服务专家）收集。使用描述性统计数据对数据进行分析，并对提供的自由文本数据进行主题分析。
在 30 个可能的国家中，共有 27 份调查从 26 个国家（86.7%）返回。有一个受访者表示他们的国家没有在家中进行长期通气（LTV）的儿童，因此，分析了 26 个国家（86.7%）的回复。没有一个回应的国家报告说他们在其国家拥有所有核心组成部分。从提供的自由文本中出现了三个主题：“家庭为过渡到家庭做好准备”、“协调向专科护理的途径”和“法律和治理结构”。
虽然 LTV 儿童在急性护理中的临床护理已经得到了相当多的关注，但结果表明需要更加关注出院到社区环境后的护理需求。结果强调了需要承诺支持护理交付，承认当代儿童健康问题的复杂性以及成为其主要照顾者的家庭的背景。
