Recruitment of African American (AA) participants into clinical research trials in the area of aging and dementia is a major problem facing the field. Although AAs are at a significantly elevated risk of developing Alzheimer’s disease (AD), they are underrepresented in clinical trials and research studies. While previous research has identified a number of barriers to participation, relatively little is known about how to overcome these barriers and engage AA individuals in research. Photovoice may provide a novel approach to advance our understanding of AA perceptions in regards to barriers and strategies to increase AA engagement in brain aging research. The purpose of this project is to add to existing understanding of barriers and facilitators and identify strategies to enhance engagement. Three AA research advocates served as community facilitators to identify and guide groups of AA adults though an 8-10 session photovoice project. Group sessions involved discussions and sharing of images pertaining to various prompts in the area of brain health and research participation. Sessions were audio-taped and transcribed verbatim and photos were uploaded. Participants identified four categories of barriers to AA research participation: Mistrust, the belief that all research involves medication, avoidance and fear of acknowledging problems, and seeing the risks of research but not the need. Participants had various suggestions and approaches for ameliorating each of these barriers. This photovoice community engagement process revealed unique insights into barriers and opportunities for increasing AA engagement in brain aging research.
African Americans (AAs) have an elevated risk of developing dementia, yet are underrepresented in clinical research. This project uses a community-engaged photovoice approach to add to existing understanding of barriers and facilitators to AA participation in Alzheimer’s disease research and identify strategies to enhance engagement. Three AA research advocates served as community facilitators to identify and guide groups of AA adults through an eight to nine session photovoice project. Group sessions involved discussions and sharing of images pertaining to various prompts in the area of brain health and research participation. Sessions were audiotaped and transcribed verbatim. Participants identified three categories of barriers to AA research participation: (a) Mistrust, (b) avoidance and fear of acknowledging problems, and (c) seeing the risks of research but not the need. Participants shared suggestions and approaches for ameliorating each of these barriers. This process revealed unique insights into barriers and opportunities for increasing AA engagement in aging and dementia research.
Introduction: African Americans (AA) are disproportionately affected by Alzheimer's disease and related dementias, yet are underrepresented in clinical research. Outreach events for AA are offered to encourage research participation; however, this approach's effectiveness remains largely unexplored. Methods:To explore the effectiveness of AA focused versus general audience events, we examined attendance data over five years, encompassing ten general audience and four events focused on AA. For each individual, we searched center records for recruitment contacts and research enrollment. Summary scores for attendance at AA focused events, general audience events, and total events were compared between those with and without research involvement.Results: Out of 773 unique AA that attended one or more event, 88 became or were involved in research (11.4% engagement). AA focused events achieved greater AA attendance than general audience events. While research engaged individuals were more likely to have ever attended an AA-focused event than a general audience event, attendance at AA focused events did not statistically relate to research engagement. In contrast, attendance at events focused on the general public was related to an increased likelihood of research participation.Discussion: These findings have important implications for designing and implementing community events to encourage AA research participation.
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