Abstract: FR-PO894
Stakeholder Perspectives on Engaging Latinx Patients in Kidney-Related Research
Session Information
- Diversity and Equity in Kidney Health - II
November 04, 2022 | Location: Exhibit Hall, Orange County Convention Center‚ West Building
Abstract Time: 10:00 AM - 12:00 PM
Category: Diversity and Equity in Kidney Health
- 800 Diversity and Equity in Kidney Health
Authors
- Alvarado, Flor, Tulane University School of Medicine, New Orleans, Louisiana, United States
- Delgado, Cynthia, San Francisco VA Health Care System, San Francisco, California, United States
- Nicholas, Susanne B., University of California Los Angeles David Geffen School of Medicine, Los Angeles, California, United States
- Tong, Allison, The University of Sydney School of Public Health, Sydney, New South Wales, Australia
- Cervantes, Lilia, University of Colorado - Anschutz Medical Campus, Aurora, Colorado, United States
Background
Latinx patients are disproportionally burdened by kidney disease compared to non-Latinx White patients and are underrepresented in kidney-related research. We aimed to describe stakeholders’ perspectives on challenges related to engaging Latinx patients in kidney-related research.
Methods
We conducted a thematic analysis of qualitative data from two online moderated discussions and an interactive online survey using open text responses among participants (i.e. stakeholders) with personal and/or professional experience with Latinx patients with kidney disease and their families/caregivers.
Results
Among eight stakeholders, there were 3 physicians, 1 nurse, 1 patient with kidney disease who received a kidney transplant, 1 policymaker, 1 PhD-trained disparities researcher, and 1 executive director of a non-profit health organization. The majority of themes (and subthemes) reflected barriers to engagement and recruitment: lack of personal relevance (inability to relate to research staff, perceived low importance of clinical trials, limited opportunities to participate; ambiguity of benefit to self and family); fear and vulnerability (immigration concerns, stigma with seeking care, skepticism of Western medicine); financial and logistical barriers (out-of-pocket costs, transportation issues); and distrust and asymmetry of power (related to limited English proficiency or health literacy, and provider bias). The last theme was on stimulating interest and establishing trust in the research process. (Figure)
Conclusion
To overcome barriers to engagement in kidney-related research and establish trust among potential Latinx research participants, investigators can employ culturally responsive and community-based strategies. These strategies can help identify local health priorities, enhance research recruitment and retention strategies, and establish partnerships that continue to elevate research endeavors aiming to enhance the health of Latinx individuals with kidney disease.
Figure. Thematic schema
Funding
- NIDDK Support – Travere Therapeutics Inc