The University of Rochester's Clinical and Translational Science Institute

描述(申请人提供)：使用美国手语(ASL)的聋人包括未被研究的语言和文化少数群体。交流和社会文化障碍在很大程度上将聋人ASL使用者排除在健康监测和研究活动之外。为了推进与聋人和健康相关的知识库，我们需要可获得和有效的知情同意程序，以便将聋人ASL用户纳入健康研究。标准书面英语知情同意的障碍包括许多成年聋人的英语阅读能力较低，从出生起或儿童早期就是如此。许多成年人从出生/童年早期就耳聋，也很难获得环境信息，例如从偷听的对话和无线电中获得的信息。由此产生的有限的“信息基金”，加上较低的英语识字率，使得英语书面同意书对大多数人来说都是无效的。 失聪的美国手语用户。这项研究将考察与聋人成人ASL使用者进行知情同意沟通的三种不同方式，并使用理解、参与研究的意愿(同意后)和信任来比较它们的有效性。这三种模式是：(1)书面英语，(2)将相同的英语书面同意材料直接翻译成美国手语，在电影中由一个人使用美国手语，以及(3)对相同的英语书面同意材料进行对话，在电影中呈现为几个聋人之间的对话，他们的对话内容涉及来自英语书面知情同意来源文件的信息和潜在的信息缺口。这项研究的结果将为聋人ASL使用者和其他语言少数群体的知情同意研究提供参考，并将为聋人ASL使用者更多地参与健康研究铺平道路。这项研究开始应对健康人群2020年的号召，以扩大关于残疾人健康决定因素的知识库。这项拟议的研究将采用针对聋人受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其他群体的同意/同意有影响，包括其他语言少数群体和识字率低的群体，包括幼儿。 公共卫生相关性：健康研究往往将聋人排除在外，聋人往往无法获得有关研究风险和同意的信息。通过改善使用手语交流的聋人的研究同意，卫生研究人员将能够与聋人手语使用者合作，开始解决与聋人和健康相关的公共卫生知识差距。

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.