Key issues in recruitment for minority aging research in humanitarian settings
Abstract Background The increasing number of natural disasters and wars will result in complex emergencies affecting how individuals age. Additionally, the continued complex crises in certain areas of the globe exacerbates risks for chronic health conditions and poverty. Implementing ethical and community‐engaged research in these complex humanitarian settings requires tailored approaches. The South Texas Alzheimer’s Disease Research Center and the Rio Grande Valley Alzheimer’s Disease Resource Center for Minority Aging Research have adopted the humanitarian lens perspective deployed in the Maracaibo Aging Study in Venezuela to promote the recruitment and retention of older adults and their care partners in the Texas/Mexico border. Our objective is to identify and share key issues in recruitment for aging research in a complex humanitarian setting. Method Listening sessions, focus groups, and interviews were carried out to understand barriers, facilitators, beliefs, and preferences of older adults, care partners of people living with dementia, promotoras/community health workers, family physicians, and community‐based organizations to understand their expectations better. Elements of the humanitarian framework and capacity building were informed by the qualitative data and guidance from a senior coalition. Result Located in the Texas/Mexico border, the Rio Grande Valley constitutes one of the most impoverished areas in the nation. Competing needs, lack of incentives for participation in research, and fear associated with increasing health care costs were the most frequently cited barriers among residents. We decided to implement several aspects of humanitarian work that were related to efficient research and as a response to community expectations. Advocacy for integrating services into primary and community care was supported through staff training, task‐sharing, and establishing referral and follow‐up mechanisms. Diversifying the research workforce with bilingual and multicultural junior investigators and promotoras further addressed the cultural fluidity. As a result, a research registry of over 400 individuals was built, and more than 400 have participated in different aging studies. Conclusion Humanitarian settings in high‐income and low‐and middle‐income countries share many implementation needs, including scaling up efforts and tackling multiple challenges simultaneously. Community‐engaged aging research in humanitarian settings requires consideration and assessment of evidence‐based planning and execution and impact evaluation.
Authors
- Ney Alliey‐Rodriguez (ORCID: https://orcid.org/0000-0001-8594-5676)
- Neela K. Patel (ORCID: https://orcid.org/0000-0002-7423-4577)
- Romeo Escobar
- Sudha S. Seshadri (ORCID: https://orcid.org/0000-0001-6135-2622)
- Gabriel A. de Erausquin (ORCID: https://orcid.org/0000-0001-6423-4461)
- Chun Xu (ORCID: https://orcid.org/0000-0001-7893-6341)
- Gladys E. Maestre (ORCID: https://orcid.org/0000-0002-0020-8042)
- Jesús D. Melgarejo (ORCID: https://orcid.org/0000-0002-1382-1153)
- Romina Adriana Clamont Reyes
- Noe Garza
- Silvia Mejía-Arango (ORCID: https://orcid.org/0000-0002-6416-1159)
- Eron G. Manusov (ORCID: https://orcid.org/0000-0002-6052-1823)
- Joseph Douglas Terwilliger (ORCID: https://orcid.org/0000-0003-2169-2010)
- Mario Gil
- Cynthia De La Garza‐ Parker
- Cristian A. Maestre
- Rosa P. Pirela‐Mavarez
- Omar Oropeza
Institutions
- Universidad del Zulia (VE)
- The University of Texas at San Antonio Health Science Center (US)
- Columbia University Irving Medical Center (US)
- The University of Texas Rio Grande Valley (US)
- Finnish Institute for Health and Welfare (FI)
- Alzheimer’s Disease Neuroimaging Initiative (US)
- Pediatrics and Genetics (US)
Publication Details
- Journal
- Alzheimer s & Dementia
- Published
- 2024-12-01
- DOI
- https://doi.org/10.1002/alz.090987
- Primary Topic
- Global Health and Surgery
- Type
- article
- Field-Weighted Citation Impact
- 0.00