父母对父母和儿童在儿科晚期癌症中报告的结果的家长观点:一种定性研究
Deborah Feifer1, Alexandra F Merz2, Madeline Avery3
1Emory University School of Medicine (D.F.), Atlanta, Georgia, USA.
Journal of pain and symptom management
|October 16, 2024
概括
父母认为孩子的症状和生活质量 (QoL) 报告与孩子自己的报告截然不同,但又相辅相成. 了解这些独特的观点对于儿科晚期癌症护理至关重要.
科学领域:
- 儿科瘤学 儿科瘤学
- 抚慰性护理是一种缓解性护理.
- 患者报告的结果
背景情况:
- 同时的父母和患者报告的结果研究往往侧重于协议.
- 父母和子女报告之间的差异很常见,但研究不足.
- 对于解释和管理这些不同观点的理解有限.
研究的目的:
- 探索家长对同时报告孩子的症状和生活质量 (QoL) 的观点.
- 在儿科晚期癌症护理的背景下了解家长的观点.
主要方法:
- 使用基于理论的定性研究,嵌入随机对照试验 (PediQUEST响应研究).
- 每周电子患者报告结果 (e-PROs) 评估18周的症状和QoL.
- 在研究结束时对半结构化家长访谈的二次分析.
主要成果:
- 77名家长提供了退出面试;大多数是白人非西班牙裔母亲.
- 关键主题:症状体验主观性,独特的父母/孩子观点,不断发展的父母调查,以及孩子们可能犹不决分享症状.
- 父母制定了主动的沟通策略,以了解孩子的经历.
结论:
- 父母认识到父母和孩子的报告是不同的和互补的数据来源.
- 研究结果为实施和解释儿科晚期癌症同时结果测量提供了指导.
- 这项研究为临床实践和儿童瘤学结果的未来研究提供了信息.
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