Drexel University, Philadelphia, PA, USA.
St. Christopher's Hospital for Children, Philadelphia, PA, USA.
Clin Pediatr (Phila). 2020 Nov;59(13):1169-1181. doi: 10.1177/0009922820941209. Epub 2020 Jul 16.
This study sought to understand caregiver needs of children with tracheostomies (CWT) living at home and inform development of standardized tracheostomy simulation training curricula. Long-term goals are decreasing hospital readmissions following tracheostomy placement and improving family experiences while implementing a medical home model. We recruited caregivers of CWT and conducted semistructured interviews, subsequently recorded, transcribed, and analyzed for emerging themes using NVivo. Demographic data were collected via quantitative surveys. Twenty-seven caregivers participated. Emerging themes included the following: (1) caregivers felt overwhelmed, sad, frightened when learning need for tracheostomy; (2) training described as adequate, but individualized training desired; (3) families felt prepared to go home, but transition was difficult; (4) home nursing care fraught with difficulty and yet essential for families of CWT. Families of CWT have specific needs related to discharge training, resources, support, and home nursing. Provider understanding of caregiver needs is essential for child well-being, patient-/family-centered care, and may improve health outcomes.
本研究旨在了解居家气管造口儿童（CWT）的照顾者需求，并为标准化气管造口模拟培训课程的开发提供信息。长期目标是减少气管造口术后的住院再入院率，并在实施医疗家庭模式的同时改善家庭体验。我们招募了 CWT 的照顾者，并进行了半结构化访谈，随后使用 NVivo 对出现的主题进行记录、转录和分析。通过定量调查收集人口统计学数据。共有 27 名照顾者参与。出现的主题包括：（1）照顾者在了解气管造口需求时感到不知所措、悲伤和恐惧；（2）培训被描述为足够，但希望进行个性化培训；（3）家庭感到已经准备好回家，但过渡困难；（4）家庭护理充满困难，但对 CWT 家庭来说是必不可少的。CWT 的家庭在出院培训、资源、支持和家庭护理方面有特定的需求。了解照顾者需求对儿童的福祉、以患者/家庭为中心的护理至关重要，并可能改善健康结果。
