Framework for creating storytelling materials to promote African American/Black adult enrollment in research on Alzheimer's disease and related disorders

Alzheimers Dement (N Y). 2020 Sep 11;6(1):e12076. doi: 10.1002/trc2.12076. eCollection 2020.


Introduction: African American/Black adults are severely underrepresented in basic, clinical, and behavioral research studies in Alzheimer's disease and related disorders (ADRD). Innovative, evidence-based, and culturally salient strategies can maximize the recruitment of African American/Black adults into ADRD research.

Methods: We conducted and analyzed semi-structured interviews to capture the research participation stories of African American/Black participants and study partners from the University of Pittsburgh's Alzheimer's Disease Research Center. The themes and messaging principles generated through this process informed the development of video- and text-based materials that were evaluated for community member acceptance using focus groups.

Results: Focus group individuals (N = 36) generally favorably rated the video and text materials, characterizing them as "interesting," "realistic," and "convincing."

Discussion: Capturing the narratives of African American/Black research participants is a critical component to developing culturally relevant materials for broader dissemination and is essential to advancing beyond information-only recruitment approaches, which tend to rely disproportionately on negative messages.

Keywords: African American; Alzheimer's disease; Black; disparities; narrative; recruitment; research; storytelling.