儿童在患有青少年无形性关节炎的第一年经历了支持计划的经验: - 从定性访谈中获得的见解
Karina Mördrup1,2, Cecilia Bartholdson3,4, Eva Broström3,4
1Department of Women´s and Children´s Health, Karolinska Institutet, Karolinska vägen 37 A 171 64 Solna, Stockholm, Sweden. karina.mordrup@ki.se.
青少年关节炎支持计划 (JASP-1) 通过综合医疗和心理社会支持,为儿童提供了安全感. 这种以患者为中心的方法改善了他们在青少年异常性关节炎 (JIA) 第一年的经验.
科学领域:
- 儿科风湿病学 儿科风湿病学
- 儿童心理学 儿童心理学
- 医疗保健管理的管理
背景情况:
- 当儿童和父母被诊断出患有慢性疾病,如青少年形性关节炎 (JIA) 时,他们面临着恐惧和焦虑.
- 以患者和家庭为中心的支持计划旨在赋予儿童和家庭导航JIA的权力.
- 有限的研究存在于儿童在JIA支持计划中的经验.
研究的目的:
- 描述儿童在JIA第一年参加青少年关节炎支持计划 (JASP-1) 的经历.
- 了解JASP-1如何影响儿童的安全感和幸福感.
主要方法:
- 个别半结构面试的定性内容分析.
- 采访了参与JASP-1的12-17岁的14名儿童.
主要成果:
- 儿童报告说,通过JASP-1的治疗,信息和支持,他们获得了安全感.
- 在接触,访问和学校出席方面取得了平衡.
- 从孩子们的经历中出现了三个不同的类别.
结论:
- JASP-1有效地整合了医疗和心理社会支持,为患有JIA的儿童提供了全面的安全感.
- 像JASP-1这样以患者和家庭为中心的计划可以增强和标准化对新诊断的儿童的护理.
- 这些计划有可能改善JIA儿童的医疗保健成果和公平.
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