Division of Respiratory Medicine, Department of Pediatrics, The Hospital for Sick Children, Toronto, Ontario, Canada
Division of Respiratory Medicine, Department of Pediatrics, The Hospital for Sick Children, Toronto, Ontario, Canada.
BMJ Paediatr Open. 2023 Oct;7(1). doi: 10.1136/bmjpo-2023-002062.
This qualitative descriptive study explores the experiences of family caregivers (FCs) of children with medical complexity who are initiated on new medical technology in the hospital and transition to new daily life at home. The study aims to investigate FCs' response and readiness for medical technology use, the value of education and transition support and the challenges associated with managing new medical technology in the home.
A qualitative descriptive approach was used to conduct and analyse 14 semistructured interviews with a group of FCs composed of 11 mothers and 3 fathers. Content analysis was used to analyse transcripts of the caregiver interviews. The study was conducted at a tertiary paediatric hospital in Toronto, Canada.
Our study revealed three main themes: FC's response and readiness for medical technology use, the value of education and transition support for initiation of new medical technology and the challenges associated with managing new medical technology in the home. FCs expressed emotional distress related to coping with the realisation that their child required medical technology. Although the theoretical and hands-on practice training instilled confidence in families, FCs reported feeling overwhelmed when they transitioned home with new medical technology. Finally, FCs reported significant psychological, emotional and financial challenges while caring for their technology-dependent child.
Our study reveals the unique challenges faced by FCs who care for technology-dependent children. These findings highlight the need to implement a comprehensive education and transition programme that provides longitudinal support for all aspects of care.
本定性描述性研究探讨了在医院接受新医疗技术并过渡到家庭日常生活的患有复杂疾病的儿童的家庭照顾者（FC）的体验。该研究旨在调查 FC 对医疗技术使用的反应和准备情况、教育和过渡支持的价值以及在家中管理新医疗技术所面临的挑战。
采用定性描述方法对一组由 11 名母亲和 3 名父亲组成的 FC 进行了 14 次半结构化访谈。使用内容分析对照顾者访谈的转录本进行了分析。该研究在加拿大多伦多的一家三级儿科医院进行。
我们的研究揭示了三个主要主题：FC 对医疗技术使用的反应和准备情况、教育和过渡支持对新医疗技术启动的价值以及在家中管理新医疗技术所面临的挑战。FC 表达了与应对孩子需要医疗技术相关的情绪困扰。尽管理论和实践操作培训增强了家庭的信心，但 FC 报告说，当他们带着新的医疗技术回家时，他们感到不知所措。最后，FC 报告说，在照顾依赖技术的孩子时，他们面临着重大的心理、情感和经济挑战。
我们的研究揭示了照顾技术依赖儿童的 FC 所面临的独特挑战。这些发现强调需要实施一项全面的教育和过渡计划，为护理的各个方面提供长期支持。
