Discussion Groups for African Americans
African Americans participate in medical research at much lower rates than their White peers both nationally and locally at the Boston University Alzheimer’s Disease Center (BU ADC). This disparity has important and potentially serious implications for the African American community because research findings may not apply to African American elders if they are underrepresented in studies. The BU ADC recognizes this problem and is committed to minimizing the gap by increasing African American elder participation in research.
The BU ADC Education & Information Transfer Core (EITC) is pleased to announce the launch of a brand new project intended to minimize research participation disparities between African American and White elders. Thanks to feedback from focus groups with fifteen African American HOPE participants held in the summer of 2008 and seven African American HOPE participants held in the winter of 2009, the EITC has developed a culturally relevant group discussion guide centered on African Americans, research, and Alzheimer’s disease (AD). The goal of the group discussion is to provide important information about how AD affects the African American community and to increase African American enthusiasm for and participation in medical research projects.
The development and implementation of the group discussion guide specifically for African Americans is one major effort by the BU ADC to put prior focus group feedback into practice. Dorothy Marshall, a recent addition to the BU ADC staff, will lead the new discussion groups. Ms. Marshall serves as the BU ADC African American Outreach Coordinator, and she is a candidate for a master’s degree at the BU School of Public Health with interests in health communication and racial disparities. The discussion groups and Ms. Marshall’s new position are funded by a special supplement grant awarded to Dr. Angela Jefferson, EITC Director, and the BU ADC as a part of the American Recovery and Reinvestment Act of 2009. Dr. Jefferson states, “This innovative project has the capacity to foster significant improvement in an area of disparity that needs our attention. We are delighted that the National Institute on Aging is committed to putting the necessary financial resources behind our efforts.”
The group discussion content covers topics that prior focus group participants identified as most relevant to African American elders. First, it presents an opportunity for African American HOPE participants to discuss and share ideas, concerns, and questions with their peers and the group leader. The discussion addresses barriers that prevent some African Americans from being involved in research, while showing why active participation in research is important and essential to the African American community as well as the scientific community at large. Second, it provides an opportunity for participants to learn more about AD and related research and ask questions about AD risk factors and prevention. Finally, it provides resources for those HOPE participants who want to get more involved or learn more about the services and research opportunities available at the BU ADC.
The first group discussion was held in January with seven HOPE participants and family members, and the feedback so far has been positive. Ms. Helen Young, a HOPE participant for seven years, states, “The discussion was useful, and I learned a lot of new information. A lot of good ideas were thrown around about how to get information out to the African American community. We were able to share our thoughts and ideas with other people in the group.” Her sister, Ms. Barbara Gumes, also a HOPE participant for seven years, states, “I really enjoyed the conversation. I enjoyed meeting other people in the group. The discussion made my mind more settled about what happens when you get older. This is important information for people to hear.” Dorothy Marshall, the group’s facilitator, is excited about the opportunity to hold additional groups and talk with HOPE participants about AD and research participation. She says, “I think that if people knew the impact they have when they get involved in research, participation rates would increase.”
Group discussions for African American HOPE participants are being held monthly. If you are an African American HOPE Study participant and you are interested in joining an upcoming group, please contact Dorothy Marshall at 617-414-8385 or email@example.com.