研究动态
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对教育视频的试点评估,以支持对儿科恶性肿瘤生物库的同意。

A Pilot Evaluation of an Educational Video to Support Consent to a Pediatric Malignancy Biobank.

发表日期:2024 May 27
作者: Eden G Robertson, Rebecca Komesaroff, David D Eisenstat, Alexandra Robertson, Louise E Ludlow
来源: MEDICINE & SCIENCE IN SPORTS & EXERCISE

摘要:

简介:生物标本的收集对于支持基础研究和转化研究是必要的。然而,生物样本库的复杂性带来了许多道德问题,特别是在知情同意方面。目标:评估促进儿童癌症中心生物库同意流程的教育视频的可接受性和感知益处。方法:我们邀请了之前同意加入生物库的个人(或其孩子),以及参与获取同意的卫生专业人员。参与者观看了视频并完成了专门设计的在线调查。结果:共有 16 名卫生专业人员(受邀 = 30 名)和 15 名患者/护理人员(受邀 = 127 名)参与。大多数患者/护理人员在同意的情况下都感到了解生物库,但指出他们当时有多么不知所措,并且没有参与书面信息。总体而言,患者/护理人员和卫生专业人员都对该视频所提供的信息和格式给予了好评。参与者认为它简单明了,一些卫生专业人员指出需要进行语言翻译,以更好地支持与他们一起工作的家庭。大多数患者/护理人员同意该视频提供了足够的信息来开始考虑参与。这与卫生专业人员的反馈一致,即该视频用作对话开始以帮助正式书面同意时最有效。结论:我们的研究结果表明,从决策者和获得同意的卫生专业人员的角度来看,我们的视频是一种可以接受且有益的工具,可以协助生物样本库的同意过程。作为互动、正式同意讨论的先驱,它似乎特别有价值。需要进一步的工作来确定我们的视频是否对决策满意度和知识等结果产生重大影响,并确定对青少年的价值。
Introduction: The collection of biological specimens is necessary to support basic and translational research. However, the complexity of biobanking introduces numerous ethical issues, particularly regarding informed consent. Objective: To evaluate the acceptability and perceived benefits of an educational video facilitating the consent process for the Children's Cancer Centre Biobank. Methods: We invited individuals who had previously consented to be (or their child to be) part of the Biobank, and health professionals who were involved in obtaining consent. Participants watched the video and completed a purpose-designed online survey. Results: A total of 16 health professionals (invited = 30) and 15 patients/caregivers (invited = 127) participated. Most patients/caregivers felt informed about the Biobank at consent, however, noted how overwhelmed they were at the time and that they did not engage with the written information. Overall, both patients/caregivers and health professionals rated the video favorably regarding the information provided and format. Participants valued that it was simple and clear, with several health professionals noting the need for linguistic translations to better support the families they work with. Most patients/caregivers agreed that the video provided enough information to begin considering participation. This aligned with the health professionals' feedback that the video was most effective when used as a conversation starter to help formalize the written consent. Conclusion: Our findings suggest that our video is an acceptable and beneficial tool to assist in the Biobank consenting process, from both the perspective of decision-makers and health professionals obtaining consent. It appears particularly valuable as a precursor to an interactive, formal consent discussion. Further work is required to determine whether our video has a significant impact on outcomes such as decision-making satisfaction and knowledge, and to determine the value to adolescents.