IMPROVING THE CONSENT PROCESS FOR LOW LITERACY PARENTS

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DESCRIPTION (Adapted from the Investigator's Abstract): Consent forms serve to guarantee that human beings participating in research are fully informed of their rights and of the procedures, risks, and benefits of any studies they agree to join. One significant problem accruing to the process of obtaining informed consent concerns the presentation of the necessary information. To ensure that complete information is conveyed, many consent forms are long and couched in technical language. Such complex language may not be suitable for target populations where literacy levels are low. Much of the research aimed at improving participant comprehension has focused on the readability of the consent forms. Such research does not, however, consider whether printed material is simply inadequate as a means of communication for individuals who have difficulty reading. Little research has examined the use of alternative media as a means of increasing accessibility of consent material for low-literacy populations. Because the poor and children of the poor are at especially high risk for a variety of health, educational, and social ills, it is particularly important that they be represented in studies addressing problems to which they are vulnerable. For this reason, research to learn how to increase the degree to which low-income parents understand the purposes of research involving their children and the effectiveness of the recruitment and consent process is particularly important. The research proposed herein is designed to (a) examine the readability and comprehensibility of currently employed consent forms, and (b) examine the media through which information is communicated to low-literacy subjects, represented by the parents of Head Start children. This will include the development of materials in alternative media (such as videotape enhancement, and interactive multimedia presentations) and testing subjects' comprehension of information presented, and their willingness to consent to their children's participation in research as a function of these various media.