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What potential research participants want to know about research: a systematic review.潜在研究参与者想了解的关于研究的内容:一项系统综述。
BMJ Open. 2012 May 30;2(3). doi: 10.1136/bmjopen-2011-000509. Print 2012.
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Assessing research participants' perceptions of their clinical research experiences.评估研究参与者对其临床研究经历的看法。
Clin Transl Sci. 2011 Dec;4(6):403-13. doi: 10.1111/j.1752-8062.2011.00349.x. Epub 2011 Nov 7.
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Patterns of level and change in self-reported driving behaviors among older adults: who self-regulates?老年人自我报告驾驶行为的水平和变化模式:谁自我调节?
J Gerontol B Psychol Sci Soc Sci. 2012 Jul;67(4):437-46. doi: 10.1093/geronb/gbr122. Epub 2011 Dec 1.
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Recruitment of Chinese American elders into dementia research: the UCSF ADRC experience.招募华裔美国老年人参与痴呆症研究:旧金山加大 ADRC 的经验。
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The effects of failing to include hard-to-reach respondents in longitudinal surveys.在纵向调查中未能纳入难以接触到的受访者的影响。
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留住门诊和社区健康研究中的参与者:研究人员与参与者自述

Retaining Participants in Outpatient and Community-Based Health Studies: Researchers and Participants in Their Own Words.

作者信息

Odierna Donna H, Bero Lisa A

机构信息

University of California, San Francisco, USA.

出版信息

Sage Open. 2014;4(4):1-11. doi: 10.1177/2158244014554391.

DOI:10.1177/2158244014554391
PMID:25599003
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4296571/
Abstract

Loss to follow-up can introduce bias into research, making it difficult to develop inclusive evidence-based health policies and practice guidelines. We aimed to deepen understanding of reasons why participants leave or remain in longitudinal health studies. We interviewed 59 researchers and current and former research participants in six focus groups ( = 55) or interviews ( = 4) at three study centers in a large academic research institution. We used minimally structured interview guides and inductive thematic analysis to explore participant-level, study-level, and contextual participation barriers and facilitators. Four main themes emerged: transportation, incentives and motivation, caregiver concerns, and the social and physical environment. Themes shared crosscutting issues involving funding, flexibility, and relationships between researchers and research participants. Study-level and contextual factors appear to interact with participant characteristics, particularly socioeconomic status and disease severity to affect participant retention. Participants' characteristics do not seem to be the main cause of study dropout. Researchers and funders might be able to address contextual and study factors in ways that reduce barriers to participation.

摘要

失访会给研究带来偏差,使得制定全面的循证卫生政策和实践指南变得困难。我们旨在加深对参与者离开或留在纵向健康研究的原因的理解。我们在一家大型学术研究机构的三个研究中心,对59名研究人员以及当前和以前的研究参与者进行了访谈,其中55人参加了六个焦点小组访谈,4人接受了单独访谈。我们使用结构松散的访谈指南和归纳主题分析法,来探究参与者层面、研究层面以及背景层面的参与障碍和促进因素。出现了四个主要主题:交通、激励与动机、照顾者担忧,以及社会和物理环境。这些主题有一些共同的交叉问题,涉及资金、灵活性以及研究人员与研究参与者之间的关系。研究层面和背景因素似乎与参与者特征相互作用,尤其是社会经济地位和疾病严重程度,从而影响参与者的留存率。参与者的特征似乎不是研究退出的主要原因。研究人员和资助者或许能够通过减少参与障碍的方式来解决背景和研究因素问题。