Overcoming Genetic Literacy Barriers Among Underserved Minorities

克服服务不足的少数群体的遗传素养障碍

基本信息

批准号：
7382682
负责人：
Catharine Wang
金额：
$ 8.55万
依托单位：
FOX CHASE CANCER CENTER
依托单位国家：
美国
项目类别：
财政年份：
2007
资助国家：
美国
起止时间：
2007-09-26 至 2009-08-31
项目状态：
已结题

来源：
https://reporter.nih.gov/project-details/7382682
关键词：
Access to Information Address Adopted Adoption Advocate African American Appendix Applied Genetics Asthma Awareness Behavior Belief Cardiovascular Diseases Caucasians Caucasoid Race Centers for Disease Control and Prevention (U.S.)Classification Collaborations Communication Communities Comprehension Condition Consult Data Depth Development Diabetes Mellitus Disease Effectiveness Effectiveness of Interventions Ensure Ethnic group Evaluation Excision Face Family Family health status Family history of Family member Feedback Focus Groups Funding Future General Population Genes Genetic Genetic Translation Genetic screening method Genomics Goals Government Government Agencies Guidelines Health Health Benefit Health Communication Health Insurance Health Professional Health Promotion Health Services Accessibility Health behavior Healthcare Healthcare Systems Healthy People 2010 High Prevalence Hispanics Human Human Genome Human Genome Project Individual Information Services Instruction Internet Intervention Interview Knowledge Language Latino Learning Life Style Linguistics Literature Malignant Neoplasms Mass Media Media Campaign Minority Minority Groups NIH Program Announcements Native-Born Nurses Online Systems Outcome Participant Pattern Physicians Population Populations at Risk Poverty Prevention Preventive Printing Procedures Process Professional counselor Provider Proxy Public Health Purpose Readability Readiness Reading Recommendation Recording of previous events Research Research Institute Research Project Grants Risk Role Sampling Smog Subgroup Surgeon Target Populations Techniques Testing Thinking Underrepresented Minority Underserved Population United States Urination base community organizations computer printing demographics design disorder prevention disorder risk ethical legal social implication falls health disparity health literacy improved innovation insight interactive multimedia literacy low socioeconomic status member prevent programs racial and ethnic response stem tool usability

项目摘要

DESCRIPTION (provided by applicant): Advances stemming from the Human Genome Project have prompted concerns about the general public's readiness to utilize this information to make informed health decisions. As a strategy to increase genetic literacy among the general public, tools are now available to enable individuals to record their family health history. However, little is known about whether the public is able to access the tools, understand how to use them, and apply the information by taking health protective actions, which can compromise the potential effectiveness of the tools. Minority populations, in particular, may face distinctive barriers in the effective use of such tools due to lack of access to culturally and linguistically appropriate health information. As such, the overarching goal of the proposed study is to understand how African American and Latino populations respond to family history tools and to identify strategies to make these tools more appropriate and accessible to these groups. The objectives of this study are threefold. First, the study will assess understanding and beliefs about the role of family history for health among target populations through 4 focus groups. Awareness of public campaigns promoting family history awareness and communication channels used for obtaining health information will also be identified. Second, the study will examine existing family history tools for readability, plain language, and cultural and linguistic appropriateness for African Americans and Latinos. Readability and plain language will be assessed using well-established techniques. Cultural and linguistic appropriateness will be examined by conducting an additional 4 focus groups in the community. Third, this study will conduct user testing of existing print and computer-based tools for collecting family history information by interviewing a total of 20 African American and Latino community members. To accomplish these objectives, study team members will initiate partnerships and collaborate with community organizations to conduct the proposed study. Study findings will provide a greater understanding of the genetic literacy needs of minority populations and identify barriers for accessing and utilizing family history tools for health promotion and disease prevention. Results will be used both to refine existing family tools to make them understandable and accessible to minority groups (i.e., culturally and linguistically appropriate) and to develop dissemination approaches (i.e., delivery channels) so that tools may effectively reach these groups. These targeted family history tools and dissemination approaches will be developed and evaluated in future research to determine the efficacy of these tools in influencing factors that are essential for improved health outcomes. The ultimate goal of this research is to reduce health disparities and improve health outcomes among underserved minorities through the use of more appropriate tools and delivery approaches.

描述（由申请人提供）：来自人类基因组项目的进步引起了人们对公众准备利用这些信息做出明智的健康决定的担忧。作为提高公众遗传素养的策略，现在可以使用工具来记录其家庭健康史。但是，关于公众是否能够访问工具，了解如何使用它们并通过采取健康保护行动应用信息，这可能损害工具的潜在有效性。尤其是，由于缺乏获得文化和语言适当的健康信息，少数人口可能会在有效使用此类工具时面临独特的障碍。因此，拟议的研究的总体目标是了解非洲裔美国人和拉丁裔人群如何响应家族史工具，并确定使这些群体更合适和可访问的策略。这项研究的目标是三倍。首先，该研究将通过4个焦点小组评估对目标人群中家族史对健康的作用的理解和信念。还将确定对促进用于获得健康信息的家族史意识和沟通渠道的公众运动的认识。其次，该研究将研究现有的家族史工具，以了解非裔美国人和拉丁美洲人的可读性，简单的语言以及文化和语言适当性。可读性和普通语言将使用良好的技术进行评估。通过在社区中进行另外4个焦点小组，将检查文化和语言适当性。第三，这项研究将对现有印刷和计算机的工具进行用户测试，以通过采访20名非裔美国人和拉丁裔社区成员来收集家族史信息。为了实现这些目标，研究团队成员将启动合作伙伴关系，并与社区组织合作进行拟议的研究。研究结果将为少数群体的遗传素养需求提供更深入的了解，并确定获得和利用家族史工具进行健康促进和疾病预防的障碍。结果将既用于完善现有的家庭工具，以使它们可以理解和可用于少数群体（即文化和语言上适当），并开发传播方法（即交付渠道），以便工具可以有效地到达这些群体。这些有针对性的家族史工具和传播方法将在未来的研究中开发和评估，以确定这些工具在影响改善健康结果至关重要的因素中的功效。这项研究的最终目的是通过使用更合适的工具和交付方法来减少健康差异并改善服务不足的少数民族的健康状况。