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研究人员向参与者反馈结果的经历与看法:研究方案。

Researchers' experiences with and perceptions of returning results to participants: Study protocol.

作者信息

McElfish Pearl A, Purvis Rachel S, Long Christopher R

机构信息

College of Medicine, University of Arkansas for Medical Sciences Northwest, 1125 N. College Ave., Fayetteville, AR, 72703, USA.

Office of Community Health and Research, University of Arkansas for Medical Sciences Northwest, 1125 N. College Ave., Fayetteville, AR, 72703, USA.

出版信息

Contemp Clin Trials Commun. 2018 Jun 15;11:95-98. doi: 10.1016/j.conctc.2018.06.005. eCollection 2018 Sep.

Abstract

BACKGROUND

Health research participants want to receive the results from research studies in which they have participated, and health research funding agencies encourage the returning of results to research participants. However, researchers rarely return results to research participants. This study protocol aims to fill the significant gap in knowledge that exists regarding experiences, perceptions, and challenges health researchers have with returning results to research participants.

DESIGN

The study will use a mixed-methods concurrent triangulation design that will collect qualitative and quantitative data in one simultaneous phase to allow researchers to utilize each type of data to corroborate the findings from the other. The research team developed a mixed-methods survey to assess the experiences, perceptions, and challenges health researchers have with returning results to research participants.

METHOD

The survey includes both quantitative and qualitative (open-ended) questions and will be implemented online and will take approximately 10-15 min for respondents to complete. The survey is divided into four topics areas, which include respondents': 1) general opinion of returning results to participants in health research studies, 2) experiences with a specific study in which they did not return results to participants, 3) perceptions of specific challenges they face in returning results to participants, and 4) demographic characteristics and professional background information.

SUMMARY

The study to be conducted will address knowledge gaps related to researchers' experiences, perceptions, and challenges with returning research results. The study is an important step toward pragmatic solutions that can improve researchers' ability to return results to participants.

摘要

背景

健康研究参与者希望获得他们所参与研究的结果,健康研究资助机构也鼓励将研究结果反馈给研究参与者。然而,研究人员很少将结果反馈给研究参与者。本研究方案旨在填补在健康研究人员向研究参与者反馈结果的经历、看法和挑战方面存在的重大知识空白。

设计

本研究将采用混合方法同步三角测量设计,在同一阶段收集定性和定量数据,以便研究人员利用每种类型的数据来证实另一种数据的研究结果。研究团队开发了一项混合方法调查,以评估健康研究人员在向研究参与者反馈结果时的经历、看法和挑战。

方法

该调查包括定量和定性(开放式)问题,将通过在线方式实施,受访者完成调查大约需要10 - 15分钟。调查分为四个主题领域,包括受访者:1)对在健康研究中向参与者反馈结果的总体看法,2)在一项未向参与者反馈结果的特定研究中的经历,3)对向参与者反馈结果时所面临的特定挑战的看法,4)人口统计学特征和专业背景信息。

总结

即将开展的这项研究将解决与研究人员在反馈研究结果方面的经历、看法和挑战相关的知识空白。该研究是朝着能够提高研究人员向参与者反馈结果能力的务实解决方案迈出的重要一步。

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