Insights From African American Older Adults on Brain Health Research Engagement: Need to See the Need

Abstract

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.

Older adults’ motivations to participate or not in epidemiological research. Qualitative inquiry on a study into dementia in Switzerland

“…Qualitative inquiry is commonly used to explore the topic of motivation to participate in research [10,16,18]. Our findings on the altruistic motive to take part into research are consistent with and extend those of previous studies, which were conducted in younger [19], and in older adults [13,[15][16][17].…”

“…Understanding the factors that modulate participation in research is important [10], especially for studies that focus on older adults [11]. The differences between older adults who participate and do not in research have been explored using both quantitative [12][13][14], and qualitative approaches [10,[15][16][17][18]. The latter proved to be particularly suitable in uncovering both the drivers to and the experience of participation [10].…”

“…Contributing to a broad societal benefit was one of the main reason for older adults to participate in clinical research, including on Alzheimer's disease [20]. Conversely, qualitative studies with African Americans older adults suggested that reasons for non-participation may include (a) mistrust, (b) avoidance and fear of acknowledging problems, and (c) seeing the risks [16]. However, no qualitative study so far has systematically reflected upon the reasons for both participation and non-participation in population health studies of older adults.…”

Improving community participation in clinical and translational research: CTSA Sentinel Network proof of concept study

“…Findings from this study show that a large majority of people, especially African Americans, express willingness to participate in research studies. This highlights a paradigm shift from historical mistrust toward research and researchers toward a more positive attitude [15][16][17][18][19][20]. The wide gap seen in this study between those who expressed an interest in participating in a health research study (93%) and those who have actually participated in any type of research study (23.5%), whether clinical-or community-based research, indicates that there are a large number of community members who are willing to participate in research studies but do not get to a study.…”

The Effectiveness of Community-based Outreach Events for the Promotion of African American Research Participation

“…Events for the general community were typically research and brain health specific, whereas those focused on the AA community had dementia themes, but had a stronger entertainment aspect. Events more focused on brain health and dementia may help overcome avoidance and communicate the need and value of research involvement, encouraging participation in dementia prevention and treatment research 23 . Future research will need to tease apart how event foci (e.g.…”