Qualitative analysis of stakeholder perspectives on engaging Latinx patients in kidney-related research

Abstract

Background Latinx individuals are disproportionally burdened by kidney diseases compared to non-Latinx White individuals and are underrepresented in kidney-related research. We aimed to describe stakeholder perspectives on Latinx patient engagement in kidney-related research. Methods We conducted a thematic analysis of two online moderated discussions and an interactive online survey with open-text responses involving participants (i.e. stakeholders), with personal and/or professional experiences with Latinx patients with kidney diseases and their families/caregivers. Results Among the eight stakeholders (Female:75%; Latinx ethnicity:88%), there were three physicians, one nurse, one patient with kidney disease who received a kidney transplant, one policy maker, one Doctor of Philosophy, and one executive director of a non-profit health organization. We identified five themes. The majority of themes and their respective subthemes (in parentheses) reflected barriers to engagement: Lack of personal relevance (unable to relate to research staff and marketing resources, and unclear benefit of research to self, family, and community); fear and vulnerability (immigration concerns, stigma with seeking care, skepticism of Western medicine); logistical and financial barriers (limited opportunities to enroll in clinical trials, 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 centered on stimulating interest and establishing trust in the research process. Conclusions To overcome barriers to engagement in kidney-related research and establish trust among potential Latinx research participants, stakeholders recommended employing cultural responsiveness 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 diseases.

Culturally responsive evaluation designs with Latine immigrants: Lessons learned during COVID‐19

“…While the Latine population constitutes over 19% of the US population, they represent only 1% of participants in NIH‐funded studies (Fischer et al., 2017; Moslimimani & Noe‐Bustamante, 2023). To better understand this discrepancy, we must acknowledge that in the past, US‐based minority populations have been harmed in the name of evaluation and research (Alvarado et al., 2023). This harm has been intentional (e.g., US Public Health Service Syphilis Study at Tuskegee) and unintentional (e.g., doing evaluations of Latine communities and then leaving without imparting any pragmatic benefits).…”

“…Nevertheless, most scholars discuss this population's underrepresentation in the context of participation barriers, with the most cited being lack of personal relevance, fear, vulnerability, logistical and financial barriers, and distrust of providers and agencies (Alvarado et al., 2023). Many Latine immigrants avoid interacting with state‐affiliated institutions because they may fear detention and deportation (Wallace & Bartlett, 2013).…”

“…Latine immigrants also tend to be more transient than other ethnic and racial populations due to socio‐economic issues, including renting instead of owning property, having limited internet access, and telephones that rely on pay‐as‐you‐go plans (Knight et al., 2009). They also consistently report the absence of childcare and transportation as a primary reason for not participating in health‐related evaluation, research, and services (Alvarado et al., 2023; Held et al., 2022). Barriers (e.g., scheduling conflicts, not responding to phone calls or text messages) can mistakenly be interpreted as a lack of buy‐in or lead to overestimating the pool of potential participants (Zayas et al., 2009).…”

“…Barriers (e.g., scheduling conflicts, not responding to phone calls or text messages) can mistakenly be interpreted as a lack of buy‐in or lead to overestimating the pool of potential participants (Zayas et al., 2009). When it comes to mental health‐related evaluations, these barriers intersect with and are amplified by stigma and distrust of evaluators (Alvarado et al., 2023).…”

“…Phase 2 results of our study suggest that when it comes to stigmatizing topics, such as suicide, evaluators can incentivize participation by starting with formal communication, trying to meet with them face‐to‐face (whether in person or on camera), and demonstrating cultural responsiveness by using more neutral terminology at first (e.g., well‐being). Additionally, stressing that the evaluation is an opportunity to help their family and community may also incentivize participation (Alvarado et al., 2023).…”