"我永远不会感觉正常":慢性病儿童通过光声报告的经验
Alejandro Cerón1, Maria Renee Ortiz Ortiz2, Isabelle Nierman3
1Department of Anthropology, University of Denver, Denver, CO, USA. Alejandro.CeronValdes@du.edu.
Pediatric nephrology (Berlin, Germany)
|October 9, 2024
概括
在危地马拉,患有慢性病 (CKD) 的儿童面临着重大的社会和家庭挑战,并难以在医疗保健系统中导航. 对这些年轻患者来说,全面的护理和改善的支持至关重要.
科学领域:
- 儿科脏病学 儿科脏病学
- 全球健康 全球健康
- 定性研究是指质量研究.
背景情况:
- 慢性病 (CKD) 不成比例地影响低收入和中等收入国家.
- 患有CKD的儿童面临着独特的医疗和心理社会挑战.
- 危地马拉的儿科病负有很大的负担.
研究的目的:
- 探索危地马拉接受置换疗法 (KRT) 的儿童的生活经历.
- 了解患有CKD的儿科患者所面临的挑战.
- 确定改善护理和支持的领域.
主要方法:
- 使用光声技术进行定性研究.
- 孩子们用摄影来描述他们对CKD的经历.
- 与儿童和照顾者进行半结构化采访,以照片为辅助.
- 对转录的采访数据进行主题分析.
主要成果:
- 八个孩子和他们的母亲参加了.
- 确定的主题包括卫生系统的互动,改变的家庭动态和社会互动困难.
- 儿童报告说,他们自我孤立和疏远.
- 导航危地马拉的卫生系统提出了重大挑战.
- 家庭结构和动态变得紧张.
结论:
- 光声是理解儿科CKD经验的有效方法.
- 慢性瘤影响儿童和家庭的多个生活领域.
- 综合护理必须承认心理社会和系统因素.
- 加强多学科支持和改善医疗保健质量对于危地马拉的儿科慢性病患者至关重要.
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