Back to Annual Meeting

Back to Annual Meeting

Abstract #157872

Alejandra J. Gepp, MA, Institute for Hispanic Health, National Council of la Raza, 1126 16th St. NW. #600, Washington, DC 20036, 202-776-1818, agepp@nclr.org, Britt Rios-Ellis, PhD, MS, NCLR/CSULB Center for Latino Community Health, California State University Long Beach, 6300 State University Drive, Suite 125, Long Beach, CA 90815, and Dale Lea, MPH, RN, CGC, FA, Education and Community Involvement Branch, National Human Genome Research Institute, 31 Center Drive, Bldg. 31, Room 4BO9, Bethesda, MD 20892-2152.

The National Council of La Raza's Institute for Hispanic Health (NCLR/IHH),conducted a one-year project with the goal of developing culturally-competent ways to reach Latinos with information about genetics/rare diseases, using a variation of NCLR's proven community-based promotores de salud (lay health workers) model.

Focus Group Discussions (FGDs) were conducted to assess Latinos' genetics-related knowledge, comfort level with the topic, understanding, barriers to learning, and preferred methods for education. Based on these findings, culturally-appropriate educational materials were developed – flipchart/training manual – to be used by promotores de salud in two of NCLR's affiliated community-based organizations (Oakland, CA and Washington, DC).

The formative research revealed a general lack of knowledge about genetics, genetic testing, and conditions, and little access to credible culturally- and linguistically-competent information. Most of the promotores (84%) found that the subjects of risk factors, genetics, rare diseases, and family health history were highly relevant to tending to their own and their community's health. In pilot testing, community members indicated that the topic of family health history was very important to them (72%) and expressed an intention to look for additional family health information and share this with family and friends (95%.

This community-driven culturally-appropriate approach successfully integrated information on genetics into topics and themes recognized by Latinos, and produced promising indications of potential behavior change. Similar efforts and results could be achieved with other Latino subgroups. In addition, other minority and “mainstream” organizations could benefit from lessons learned and potentially replicate the project in their own communities.

Learning Objectives:

• 1. Describe a community-based formative research model to produce culturally-competent and linguistically-appropriate educational materials.
• 2. Outline a community-based educational model to reach out to Latinos with information about genetics and rare diseases.
• 3. Articulate remaining research gaps and potential strategies with which to address them

Keywords: Community-Based Health Promotion, Education

Related Web page: http//www.nclr.org

Presenting author's disclosure statement:

Any relevant financial relationships? No
Any institutionally-contracted trials related to this submission?

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.