与患者倡导组织的合作伙伴关系改善了研究招聘
Lori Wiener1, Kimberly Buff2, Kimberly Canter3,4
1Center for Cancer Research, National Cancer Institute, National Institutes of Health, Bethesda, Maryland, USA.
Pediatric blood & cancer
|December 15, 2024
概括
让儿科瘤学患者和家属参与心理社会研究至关重要,但具有挑战性. 本研究详细介绍了ISTEPPP研究成功与倡导团体建立的公平合作伙伴关系,为未来的研究提供了一个模型.
科学领域:
- 儿科瘤学 儿科瘤学
- 心理社会研究 心理学研究
- 患者和家庭的参与.
背景情况:
- 提高患者和家人的声音在儿科心理社会研究中至关重要.
- 这种做法尚未成为标准,缺乏明确的指导.
- 公平的伙伴关系对于有意义的包容是必不可少的.
研究的目的:
- 描述与儿科瘤患者倡导小组的公平合作模式.
- 详细介绍"共同实施标准:让家长和提供者参与心理社会护理 (iSTEPPP) "研究的过程.
- 为未来以患者和家庭为中心的研究提供框架.
主要方法:
- 公平地与儿科瘤病人的倡导团体合作.
- 参与各个研究阶段的合作伙伴:研究开发,调查改进和招聘.
- 记录了伙伴关系的方法,并提供了具体的例子.
主要成果:
- 在整个iSTEPPP研究中,成功地整合了患者和家庭的观点.
- 提高研究工具和程序的相关性和可行性.
- 加强了研究人员和倡导团体之间的合作关系.
结论:
- 公平的伙伴关系是可行的,并有利于儿科心理社会研究.
- 这种模式可以通过将患者和家庭的经验作为中心来提高研究的质量和影响.
- 进一步增长的机会存在于改进和扩大患者和家庭参与的研究.
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