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了解家长的不确定性来源和管理策略,同时照顾一个被诊断患有血液癌症的孩子
Easton N Wollney1, Carma L Bylund1,2, Amanda L Kastrinos3
1Department of Health Outcomes & Biomedical Informatics, University of Florida, Gainesville, FL, United States of America.
PEC innovation
|September 4, 2023
概括
患有血液癌症的孩子的父母在治疗和未来方面经历了不确定性. 他们通过在线搜索信息和与临床医生交谈来管理这种情况,强调需要改善护理人员和临床医生的沟通.
科学领域:
- 儿科瘤学 儿科瘤学
- 心理社会瘤学
- 卫生沟通健康沟通
背景情况:
- 被诊断为血液癌症的儿童和年轻人 (CA/YA) 的父母经常遇到不确定性.
- 有效地管理不确定性对于减轻与疾病相关的压力因素相关的心理社会负担至关重要.
研究的目的:
- 确定儿童血液癌症患者家长不确定性的来源.
- 确定家长用来管理不确定性的策略.
- 检查临床医生对父母在线信息搜索行为的反应.
主要方法:
- 进行了深入的,半结构化的电话采访,对20名CA/YA的家长进行了深入的采访,这些家长在过去1-18个月内在美国被诊断患有血液癌症.
- 采用专题分析来分析采访数据.
主要成果:
- 父母报告说,他们对治疗选择,疗效,副作用,复发和孩子的未来感到不确定.
- 管理策略包括在线搜索信息,与临床医生讨论,并加入支持小组.
- 临床医生对家长在线搜索信息的反应各不相同,被描述为支持和不支持.
结论:
- 父母在整个癌症连续过程中经历了持续的不确定性,从初始治疗到生存.
- 干预措施,特别是那些加强家长,护理人员和临床医生的沟通的干预措施,是需要通过解决不确定性来支持父母的心理健康.
- 系统层面的干预措施也可能有利于父母应对儿童癌症的复杂性.
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