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本文引用的文献

1
Strategies for research recruitment and retention of older adults of racial and ethnic minorities.招募和留住老年种族和少数民族成年人的研究策略。
J Gerontol Nurs. 2015 May;41(5):14-23; quiz 24-5. doi: 10.3928/00989134-20150325-01. Epub 2015 Mar 30.
2
Digital multimedia: a new approach for informed consent?数字多媒体:一种获取知情同意的新方法?
JAMA. 2015 Feb 3;313(5):463-4. doi: 10.1001/jama.2014.17122.
3
Interventions to improve recruitment and retention in clinical trials: a survey and workshop to assess current practice and future priorities.改善临床试验受试者招募与留存的干预措施:一项评估当前实践及未来优先事项的调查与研讨会
Trials. 2014 Oct 16;15:399. doi: 10.1186/1745-6215-15-399.
4
Development of the Patient Education Materials Assessment Tool (PEMAT): a new measure of understandability and actionability for print and audiovisual patient information.患者教育材料评估工具(PEMAT)的开发:一种针对印刷和视听患者信息的可理解性和可操作性的新测量方法。
Patient Educ Couns. 2014 Sep;96(3):395-403. doi: 10.1016/j.pec.2014.05.027. Epub 2014 Jun 12.
5
Audio-visual presentation of information for informed consent for participation in clinical trials.用于参与临床试验的知情同意的信息视听展示。
Cochrane Database Syst Rev. 2014 May 9;2014(5):CD003717. doi: 10.1002/14651858.CD003717.pub3.
6
Challenges and strategies pertaining to recruitment and retention of frail elderly in research studies: a systematic review.与研究中招募和保留虚弱老年人相关的挑战和策略:系统评价。
Arch Gerontol Geriatr. 2014 Jul-Aug;59(1):18-24. doi: 10.1016/j.archger.2014.03.006. Epub 2014 Mar 30.
7
iPad-based patient briefing for radiological examinations-a clinical trial.基于iPad的放射检查患者简报——一项临床试验。
J Digit Imaging. 2014 Aug;27(4):479-85. doi: 10.1007/s10278-014-9688-x.
8
Using animation as an information tool to advance health research literacy among minority participants.将动画作为一种信息工具,以提高少数族裔参与者的健康研究素养。
AMIA Annu Symp Proc. 2013 Nov 16;2013:475-84. eCollection 2013.
9
Procedures of recruiting, obtaining informed consent, and compensating research participants in Qatar: findings from a qualitative investigation.卡塔尔招募、获取知情同意及补偿研究参与者的程序:一项定性调查的结果
BMC Med Ethics. 2014 Feb 4;15:9. doi: 10.1186/1472-6939-15-9.
10
Engaging hard-to-reach patients in patient-centered outcomes research.让难以接触的患者参与以患者为中心的结局研究。
J Comp Eff Res. 2013 May;2(3):313-24. doi: 10.2217/cer.13.11.

改善文化和语言多样化人群参与临床试验的方法综述。

A review of approaches to improve participation of culturally and linguistically diverse populations in clinical trials.

作者信息

Hughson Jo-Anne, Woodward-Kron Robyn, Parker Anna, Hajek John, Bresin Agnese, Knoch Ute, Phan Tuong, Story David

机构信息

School of Languages and Linguistics, The University of Melbourne, Parkville, VIC, 3010, Australia.

Department of Medical Education, Melbourne Medical School, University of Melbourne, Parkville VIC, 3010, Australia.

出版信息

Trials. 2016 May 26;17(1):263. doi: 10.1186/s13063-016-1384-3.

DOI:10.1186/s13063-016-1384-3
PMID:27229153
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4880985/
Abstract

The under-representation of culturally and linguistically diverse participants in clinical trials is an ongoing concern for medical researchers and the community. The aim of this review is to examine the complex issue of recruiting culturally and linguistically diverse (CALD) older people to medical research and to examine responses to these issues. The review focuses on (1) trends in the existing literature on barriers to and strategies for recruiting CALD and older people to clinical research, (2) issues with informed consent for CALD populations, and (3) the efficacy of innovative approaches, including approaches incorporating multimedia in research and consent processes. The literature indicates that predominant barriers to greater involvement of CALD patients in clinical trials are communication, including literacy and health literacy considerations; English language competence; and cultural factors in the research setting such as mistrust of consent processes, as well as considerable practical and logistical barriers, including mobility considerations. Some evidence exists that incorporating multimedia resources into the informed consent process can improve patient understanding and is preferred by patients, yet these findings are inconclusive. A multi-methodological approach, including the use of culturally and linguistically sensitive multimedia tools, may help address the issue of low inclusion of CALD groups in clinical research. Researcher education needs to be taken into account to address preconceptions about CALD resistance to research participation and to raise awareness of cultural concerns in regard to research participation.

摘要

临床试验中文化和语言背景多样的参与者代表性不足,这一直是医学研究人员和社会关注的问题。本综述的目的是研究招募文化和语言背景多样(CALD)的老年人参与医学研究这一复杂问题,并审视对这些问题的应对措施。该综述聚焦于:(1)现有文献中关于招募CALD老年人参与临床研究的障碍和策略的趋势;(2)CALD人群知情同意方面的问题;(3)创新方法的效果,包括在研究和同意过程中纳入多媒体的方法。文献表明,CALD患者更多参与临床试验的主要障碍包括沟通,涉及识字能力和健康素养;英语语言能力;以及研究环境中的文化因素,如对同意过程的不信任,还有诸多实际和后勤障碍,包括行动能力方面的考虑。有证据表明,在知情同意过程中纳入多媒体资源可提高患者理解程度且为患者所青睐,但这些结果尚无定论。一种多方法途径,包括使用文化和语言敏感的多媒体工具,可能有助于解决CALD群体在临床研究中纳入率低的问题。需要考虑研究人员的教育,以消除对CALD群体抗拒参与研究的先入之见,并提高对研究参与方面文化问题的认识。