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

• 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
• 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

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）：人类基因组计划的进展引发了人们对公众是否愿意利用这些信息做出明智的健康决策的担忧。作为提高公众遗传知识水平的一项战略，现已提供工具，使个人能够记录其家族健康史。然而，公众是否能够获得这些工具，了解如何使用它们，并通过采取健康保护行动来应用这些信息，这可能会损害这些工具的潜在有效性，对此知之甚少。特别是少数群体，由于无法获得在文化和语言上适当的健康信息，在有效使用这些工具方面可能面临独特的障碍。因此，拟议研究的总体目标是了解非洲裔美国人和拉丁裔人口如何应对家族史工具，并确定策略，使这些工具更适合这些群体。本研究的目标有三个方面。首先，该研究将通过4个焦点小组评估目标人群对家族史对健康作用的理解和信念。还将确定提高对家族史认识的公共宣传运动和用于获取健康信息的沟通渠道。第二，这项研究将检查现有的家族史工具的可读性，简单的语言，文化和语言的非洲裔美国人和拉丁美洲人的适当性。将使用成熟的技术评估可读性和简明语言。文化和语言的适当性将通过在社区中进行另外4个焦点小组进行审查。第三，这项研究将进行用户测试现有的印刷和计算机为基础的工具，通过采访共20个非洲裔美国人和拉丁裔社区成员收集家族史信息。为了实现这些目标，研究小组成员将发起伙伴关系，并与社区组织合作进行拟议的研究。研究结果将使人们更好地了解少数群体的遗传知识需求，并确定获得和利用家族史工具促进健康和预防疾病的障碍。调查结果将用于完善现有的家庭工具，使少数群体能够理解和使用这些工具（即，在文化和语言上适当）和制定传播方法（即，提供渠道），以便工具能够有效地接触到这些群体。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，以确定这些工具在改善健康结果所必需的影响因素中的功效。这项研究的最终目标是通过使用更适当的工具和交付方法，减少健康差距，改善服务不足的少数群体的健康成果。