儿科移植后的生活结果:长期幸存者的定性,传记研究
Valentin Ritschl1,2, Tanja Stamm3,2, Axana Selzer4
1Institute for Outcomes Research, Centre for Medical Data Science, Medical University of Vienna, Wien, Austria.
Archives of disease in childhood
|January 11, 2024
概括
患有末期脏病 (ESKD) 的儿童及其家人深切地渴望正常生活,他们对实现正常生活的看法和策略各不相同. 兄弟姐妹对于社会包容至关重要,指导未来的干预,以获得更好的生活结果.
科学领域:
- 儿科脏病学 儿科脏病学
- 定性研究是指质量研究.
- 生命课程研究 生命课程研究
背景情况:
- 末期病 (ESKD) 显著影响儿童的生活和家庭动态.
- 了解儿科ESKD幸存者的生活经验对于改善护理至关重要.
- 以前的研究强调了儿童慢性病中以患者为中心的结果的必要性.
研究的目的:
- 分析ESKD儿童及其家人的叙事生活故事.
- 为卫生专业人员确定有效的支持策略,以提高这些儿童的生活成果.
- 从幸存者及其家人的角度探索不断发展的'正常'概念.
主要方法:
- 定性叙事传记研究设计. 定性叙事传记研究设计.
- 与长期儿科移植幸存者及其家属的采访.
- 结合了定性分析和计算主题建模 (隐性迪里克莱特分配).
主要成果:
- 主要的主题是幸存者和家人对日常生活中正常状态的强烈渴望.
- 患者和护理人员采用不同的策略来实现正常状态,重点是个人进步或家庭福祉.
- 兄弟姐妹在促进幸存者的社会融入方面发挥了重要作用.
结论:
- 这些发现与"神经病学标准化结果" (SONG) 倡议的生存和参与生活的重点一致.
- 这项研究为国际努力制定类型学和为儿科ESKD量身定制的干预措施提供了基础.
- 应特别注意兄弟姐妹在支持ESKD儿童方面的作用.
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