Identifying Mechanisms for Comprehension and Retention of Research Study Consent in Latinxs with Schizophrenia

Background and Purpose:

Culturally appropriate consent processes are foundational for advancing inclusive and equitable social work research. This study focuses on Latinx individuals with schizophrenia, a group at particular risk for insufficient comprehension and retention of information disclosed in the research consent process. We focus on education and health literacy, which are often lower among Latinxs, especially recent immigrants and those with limited English proficiency. These factors may impact consent comprehension and effectiveness but their precise influence remains unclear. Our study aims to bridge this gap. We hypothesize that (1) Spanish-preferring Latinxs will demonstrate poorer comprehension and retention compared to non-Latinx Whites and English-preferring Latinxs, with education mediating this relationship; (2) health literacy will partially mediate education’s effect on comprehension and retention in Latinx participants.

Methods:

The study included Latinx (n=120) and non-Latinx White (n=60) adults with a diagnosis of schizophrenia in Southern California. Bilingual/bicultural staff conducted the research protocol in the participants’ preferred language, with half of the Latinx group opting for Spanish over English. Participants were carefully guided through a simulated consent for a fictitious drug trial and subsequently tested on “comprehension” of study information using the “Understanding” subscale of the MacArthur Competence Assessment Tool for Clinical Research (MacCAT-CR). Participants also completed the Short Assessment of Health Literacy (SAHL) and provided sociodemographic information including level of education. The MacCAT-CR was also administered one month later to test “retention” of information. ANOVAs were conducted to analyze effects of demographic group membership (non-Latinx White, English-preferring Latinxs, or Spanish-preferring Latinxs) on outcomes. Multivariate linear regression models tested mediation assumptions before applying mediation models using the R ‘mediation’ package. Bootstrapping was applied to assess the indirect effects using 95% bias-corrected accelerated confidence intervals.

Results:

ANOVAs confirmed significant mean differences among demographic groups for both comprehension (η²=.07, p<.01) and retention (η²=.08, p<.001), demonstrating medium-large effect sizes. Tukey’s HSD post hoc tests for comprehension indicated that the Spanish-preferring group performed significantly worse than the White group (p<.01). The White group had significantly higher retention scores than both the Spanish-preferring (p<.001) and English-preferring (p<.05) Latinxs. Level of education significantly mediated 48% (p<.01) of the demographic group membership effect on both comprehension (ab=.74, p<.001; c′=.80, ns) and retention (ab=.94, p<.001; c′=1.02, ns). Looking more specifically at the Latinx group, Health Literacy partially mediated the effect of education on comprehension (ab=.25, p<.01; c′=.61, p<.05) by 29% (p<.01) and retention (ab=.36, p<.001; c′=.85, p<.001) by 30% (p<.01).

Conclusions and Implications:

Recognizing consent as an ongoing process and the diverse nature of the Latinx community, our study aimed to identify mechanisms to enhance consent effectiveness among Latinxs with schizophrenia. Ethnic identity and language preference served as indicators of research comprehension and retention, largely influenced by education levels. Mediation analyses confirmed that health literacy partially mediates the impact of education on comprehension and retention. While addressing education levels may pose challenges for social work researchers and practitioners, targeting health literacy – essential for making informed health decisions – offers a promising avenue for improving consent effectiveness and broader health outcomes.