对于患有青少年异常性关节炎的儿童的诊断之旅:一种定性研究
Aurelie Chausset1,2, Caroline Freychet3, Anne Lohse4
1CRECHE Unit INSERM-CIC 1405, Department of Pediatrics, CHU Clermont-Ferrand, Clermont-Ferrand, France achausset@chu-clermontferrand.fr.
Archives of disease in childhood
|August 22, 2024
概括
了解青少年异常性关节炎 (JIA) 的诊断过程至关重要. 这项研究揭示了父母对父母的看法.
科学领域:
- 儿科风湿病学 儿科风湿病学
- 质量健康研究 质量健康研究
- 患者体验 患者体验
背景情况:
- 青少年异常性关节炎 (JIA) 诊断和转诊途径对家庭来说可能是复杂的.
- 了解患者和家长的旅程对于改善护理至关重要.
- 之前的研究还没有完全捕捉到家庭在JIA诊断过程中所经历的经历.
研究的目的:
- 探索患有JIA的儿童的诊断旅程和转诊途径,从症状发作到最初的儿科风湿病学评估.
- 了解被诊断为JIA的儿童及其父母的经历.
- 确定影响诊断体验及其影响的因素.
主要方法:
- 使用半结构面试进行的定性研究.
- 用于数据分析的解释性现象学分析 (IPA).
- 19个家庭的孩子被诊断出患有JIA (4-24个月前),包括22个父母和12个孩子超过11岁,在4个儿科类风湿病中心参加.
主要成果:
- 家庭通常最初将症状视为微不足道,进步到日益紧迫的感觉.
- 在家庭的担忧和最初的医疗干预之间存在感知差距.
- 父母经常因为缺乏医生指导而采取行动.
- 不同的护理途径元素显著影响了诊断经验及其结果.
结论:
- 延迟JIA诊断的心理社会影响,特别是对于青少年来说,是显著的.
- 建议将患者和家长的经验纳入PCP培训和指南中.
- 开发集成的在线资源,包括医疗信息和家庭证词,可以赋予家庭权力,改善沟通.
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