A Cross‐Regional and Cross‐Generational Approach to Addressing Recruitment Barriers: The Engaging Communities of Hispanics/Latinos for Aging Research (ECHAR) Network
Luis Daniel Medina- Psychiatry and Mental health
- Cellular and Molecular Neuroscience
- Geriatrics and Gerontology
- Neurology (clinical)
- Developmental Neuroscience
- Health Policy
- Epidemiology
Abstract
Background
Despite being the largest and one of the fastest growing ethnic groups in the United States, Hispanics/Latinos (H/Ls) comprise only about 5% of NIH‐funded Alzheimer’s disease and related dementias (ADRD) research participant samples. Exclusion of H/Ls limits the generalizability of research findings and our understanding of brain health disparities. The Engaging Communities of Hispanics for Aging Research (ECHAR) Network is a collaborative, transdisciplinary network aimed at engaging, educating, and motivating H/Ls for participation in ADRD research by addressing several barriers to inclusion, including trust and ADRD‐related communication.
Method
ECHAR has been employing a novel, community‐engaged method – Boot Camp Translation (BCT) – to translate medical jargon into action‐based, community relevant messages by answering the questions: What are the key messages [about ADRD]? Who in my community needs to hear these messages? How do we get these messages to them? BCT was carried out in three metropolitan areas with large H/L populations: Denver, Colorado; Houston, Texas; and Las Vegas, Nevada. We also carried out BCT in groups of middle‐to‐older‐age adults as well as in younger adults. Over the course of several months, community stakeholders worked closely with the research team to co‐create ADRD communications targeted to local communities. An additional objective of ECHAR has been to invite BCT participants to form local community action boards (CABs); as members of the research infrastructure, CABs help further improve community relations and inclusion.
Result
Pre‐/post‐ comparisons showed significant improvement in subjective understanding (Cohen’s d = 0.75; p<0.001) and objective knowledge of Alzheimer’s disease (Cohen’s d = 0.79; p<0.001). Similarities were observed across the three sites; H/L community members identified key messages related to reducing stigma, emphasizing brain health and risk mitigation, and acknowledging the impact of Alzheimer’s disease on multi‐generational families/households. Participants also recommended sharing these messages with H/Ls across the lifespan using multi‐media avenues. Key cross‐regional and cross‐generational differences were also observed and will be described.
Conclusion
The ECHAR Network has developed key, culturally responsive, ADRD‐related materials as well as dissemination strategies for H/L recruitment. Moreover, by establishing CABs in each city, we have developed sustainable research infrastructure to enhance outreach.