The University of Rochester's Clinical and Translational Science Institute

描述（由申请人提供）：使用美国手语（ASL）的聋人包括未被充分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人美国手语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，我们需要可访问和有效的知情同意程序，以便将聋人美国手语使用者纳入健康研究。标准书面英语知情同意书的障碍包括许多成年聋人的英语阅读能力较低，他们从出生或童年早期就耳聋。许多成年人自出生/童年早期就耳聋，他们获取周围环境信息的途径也很有限，比如从无意中听到的谈话和收音机中获得的信息。由此产生的有限的“信息储备”，加上低英语水平，使得书面的英语同意书对大多数人来说无效

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.