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通过创新的教育方法,赋予状细胞贫血患者及其家属权力

Riley Plett^1,2, Craig Eling³, Sarah Tehseen^1,3

¹Department of Pediatrics University of Saskatchewan Saskatoon Canada.

|November 29, 2023

概括

为儿童状细胞贫血 (SCA) 患者和家长开发了创新的教育视频. 反改进了材料,增强了知识和自我效能,以改善疾病管理和减少住院治疗.

科学领域:

血液学血液学血液学
儿科医学儿科医学
卫生教育卫生教育教育

背景情况:

状细胞疾病 (SCD),也称为状细胞贫血 (SCA),影响着大约5000名加拿大人.
儿童SCA患者教育对于改善健康结果至关重要,包括减少住院治疗和改善功能.
现有的教育材料可能无法充分满足儿科患者及其家属的需求.

研究的目的:

为儿科SCA患者及其家长/监护人开发和评估创新的教育材料.
改善患者和家长的知识和自我有效性,以管理SCA.
收集反,以改进教育内容以满足特定需求.

主要方法:

为儿科SCA患者和家长量身定制的教育视频的开发.
招募了5名患有SCA的儿科患者 (8-18岁) 和5名父母 (0-18岁).
通过Zoom进行的焦点小组和采访,用NVivo软件分析成绩单.
主题分析侧重于SCA管理概念,包括年龄适当性,赋权和药物坚持.

主要成果:

确定的主要主题包括"适应年龄"",赋权"",知识差距"",语言可访问性"",药物坚持"",社区力量"和"过渡到成人护理".
教育视频得到了积极的接待,参与者报告说它"带来了心灵的平静".
患者和家长的反成功地纳入了教育材料的最终版本.

结论:

开发的教育材料有效地提高了儿童患者及其家属SCA管理的知识和自我效能.
纳入患者和家长的反对于创建可访问和有影响力的健康教育资源至关重要.
这些材料有可能减少住院治疗,并改善SCA患者的整体生活质量.

关键词:

血液学血液学血液学儿科血液学/瘤学状细胞贫血是什么意思状细胞疾病是一种状细胞疾病.

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