The University of Rochester's Clinical and Translational Science Institute

罗切斯特大学临床与转化科学研究所

• 批准号: 8475800
• 负责人: THOMAS Arthur PEARSON
• 金额: $ 14.32万
• 依托单位: UNIVERSITY OF ROCHESTER
• 依托单位国家: 美国
• 财政年份: 2006
• 资助国家: 美国
• 起止时间: 2006-09-30 至 2016-06-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/8475800
• 关键词: Academic Medical Centers; Address; Adult; Award; Birth; Child; Clinical; Clinical Research; Clinical Sciences; Communication; Comprehension; Consent; Consent Forms; Coupled; Data; Development; Dimensions; Disabled Persons; Education; Educational Curriculum; Evaluation; Faculty; Film; Funding; Goals; Health; Health education; Healthy People 2020; Hearing Impaired Persons; Home environment; Incubators; Individual; Informed Consent; Institutes; Institution; K-Series Research Career Programs; Knowledge; Language; Maintenance; Measurement; Measures; Medical center; Methods; Minority; Minority Groups; Modality; Modeling; New York; Performance; Persons; Population; Process; Public Health; Radio; Reading; Rejuvenation; Reporting; Research; Research Activity; Research Personnel; Risk; Sign Language; Source; Training Programs; Translational Research; Translations; Trust; Universities; Use Effectiveness; Work; Writing; base; comparative effectiveness; early childhood; effectiveness research; improved; innovation; knowledge base; literacy; programs; public health relevance; public-private partnership; response; university student; willingness

DESCRIPTION (provided by applicant): Deaf people who use American Sign Language (ASL) comprise understudied language and cultural minority groups. Communication and sociocultural barriers largely exclude deaf ASL users from health surveillance and research activities. To advance the knowledge-base related to deaf people and health, we need accessible and effective informed consent processes in order to include deaf ASL users in health research. Barriers to standard written English informed consent include the low English reading ability of many adults deaf since birth or early childhood. Many adults deaf since birth/early childhood also have limited access to ambient information, such as from overheard conversation and radio. The resulting limited "fund of information," coupled with low English literacy, renders written English consent forms ineffective for most deaf ASL users. This study will examine three distinct modalities of informed consent communication with deaf adult ASL users and compare their effectiveness using measures of comprehension, willingness to engage in research (post-consent), and trust. The three modalities are: (1) Written English, (2) direct Translation of the same written English consent material into ASL, presented on film featuring one person using ASL, and (3) Dialogic Adaptation of the same written English consent material, presented on film as a dialogue amongst several deaf individuals where the content of their conversation addresses the information from the written English informed consent source document and potential fund of information gaps. Findings from this research will inform research on informed consent with deaf ASL users and other language minority populations, and will pave the way for increased participation of deaf ASL users in health research. This research begins to address the Healthy People 2020 call to expand the knowledge base about determinants of health for people with disabilities. This proposed research will take an approach used with health education materials meant for deaf audiences and apply it to the process of delivering research consent information. The video-based consent modalities evaluated here have implications for consent/assent with other groups, including other language minority groups and those with low literacy, including young children. Public Health Relevance: Health research often excludes deaf people, and information on research risk and consent is often inaccessible to deaf people. By improving research consent with deaf people who communicate in sign language, health researchers will be able to work with deaf sign language users to start to address public health knowledge gaps related to deaf people and health.

描述（由申请人提供）：使用美国手语（ASL）的聋人组成了研究的语言和文化少数群体。沟通和社会文化障碍在很大程度上将聋哑用户排除在健康监视和研究活动之外。为了促进与聋人和健康有关的知识基础，我们需要可访问有效的知情同意程序，以便在健康研究中包括聋哑人ASL用户。 标准英语知情同意书的障碍包括自出生或幼儿以来，许多成年人聋哑人的英语阅读能力低。自出生/幼儿以来，许多成年人聋哑也有限获取环境信息，例如听到对话和广播。由此产生的有限的“信息基金”，再加上英语低的素养，渲染图书面的英语同意书对大多数人无效 聋哑用户。这项研究将研究与聋人ASL使用者的知情同意交流的三种不同方式，并使用理解量度，参与研究（后期）和信任的意愿来比较其有效性。 The three modalities are: (1) Written English, (2) direct Translation of the same written English consent material into ASL, presented on film featuring one person using ASL, and (3) Dialogic Adaptation of the same written English consent material, presented on film as a dialogue amongst several deaf individuals where the content of their conversation addresses the information from the written English informed consent source document and potential fund of information gaps.这项研究的结果将为聋哑用户和其他语言少数群体的知情同意研究提供信息，并为增加聋哑用户参与健康研究的参与铺平道路。这项研究开始解决2020年健康人的呼吁，以扩大有关残疾人健康决定因素的知识基础。这项拟议的研究将采用一种用于聋人观众的健康教育材料的方法，并将其应用于提供研究同意信息的过程。此处评估的基于视频的同意模式对与其他群体（包括其他语言少数群体和识字率低的人，包括幼儿）的同意/同意有影响。 公共卫生相关性：健康研究通常排除聋人，聋人通常无法获得研究风险和同意的信息。通过改善与手语交流的聋人的研究同意，健康研究人员将能够与聋人手语用户合作，开始解决与聋人和健康有关的公共卫生知识差距。