Mattson Janet, Lunnelie Johan, Löfholm Tim, Andersson Elina Scheers, Aune Ragnhild E, Björling Gunilla
Department of Health Sciences, Swedish Red Cross University, Sweden.
Department of Learning, Informatics, and Medical Education, Karolinska Institutet, Sweden.
SAGE Open Nurs. 2022 Apr 26;8:23779608221094522. doi: 10.1177/23779608221094522. eCollection 2022 Jan-Dec.
Home mechanical ventilation is an established method to support children suffering from chronic respiratory insufficiency, still more research is needed regarding mechanically ventilated children's and adolescents' quality of life (QoL). Therefore, the aim of this scoping review was to explore research regarding QoL and lived experience of children and adolescents with home mechanical ventilation.
A scoping review with systematic searches for research studies published between year 2000-2020 was performed in Cinahl, Medline, and PubMed. Studies that met the inclusion criteria were quality assessed and a thematic analysis was performed.
In total, ten articles were quality assessed and included in the results. Four themes emerged: Children's self-reported QoL, Parents' perception and parent-proxy report, Differences between the child's and parent's perception, and challenges in daily life. Children with home mechanical ventilation reported a lower QoL than healthy children and children with other chronic diseases. Generally, parents rate their child's QoL lower than the children themselves.
This is the first literature review focusing on HMV in the paediatric population. It is clear that HMV does not only affect the treated child or adolescent but also the whole family. It is important to regularly measure and evaluate QoL in children and adolescents with HMV to provide person-centered care. More research is needed to improve these children's and adolescents' QoL.
家庭机械通气是支持患有慢性呼吸功能不全儿童的既定方法，但关于机械通气儿童和青少年的生活质量（QoL）仍需要更多研究。因此，本范围综述的目的是探索关于接受家庭机械通气的儿童和青少年的生活质量及生活体验的研究。
在护理学与健康领域数据库（Cinahl）、医学期刊数据库（Medline）和医学期刊数据库（PubMed）中对2000年至2020年间发表的研究进行了系统检索的范围综述。对符合纳入标准的研究进行质量评估并进行主题分析。
总共对十篇文章进行了质量评估并纳入结果。出现了四个主题：儿童自我报告的生活质量、父母的认知和父母代理报告、儿童与父母认知的差异以及日常生活中的挑战。接受家庭机械通气的儿童报告的生活质量低于健康儿童和患有其他慢性病的儿童。一般来说，父母对孩子生活质量的评价低于孩子自己。
这是第一篇关注儿科人群家庭机械通气的文献综述。很明显，家庭机械通气不仅影响接受治疗的儿童或青少年，也影响整个家庭。定期测量和评估接受家庭机械通气的儿童和青少年的生活质量以提供以患者为中心的护理很重要。需要更多研究来改善这些儿童和青少年的生活质量。
