Low-literacy Participants Research Articles

Abstract A038: Increasing involvement and accrual in research studies from communities of underrepresented populations through the lens of a community based participatory approach via the Community Research Registry (CoRR)

Abstract Introduction: Underrepresented communities experience a lack in research participation due to multifaceted barriers including historical research mistrust, language barriers, transportation inaccessibility, and other social determinants of health. The disproportionate representation in racial, ethnic, and medically underserved communities furthers the gap in health disparities and treatment outcomes. For this reason, the Mayo Clinic Community Research Registry (CoRR) was developed in 2022 to specifically create a registry of underrepresented communities and connect them to research studies. Methodology: Mayo Clinic CoRR utilizes a community based participatory research (CBPR) approach involving bidirectional engagement with community participants, partnership with community stakeholders and leaders, dissemination of clinical trial information, and use of evidence-based education materials for community outreach. CoRR community partnerships include fraternities, sororities, churches, the American Legion, local physicians, pharmacies, clinics, and health fair events. Through questionnaires, study participants indicate the level of research participation they are comfortable with and are matched to research studies based on their individualized responses. New Unpublished Data: As of early June 2023, CoRR has 270 participants enrolled in the registry with 94% of participants being Black and 6% Hispanic. Average age of the participants is 63 years and includes 63% female and 37 % male. As community input is vital to its development, Mayo Clinic CoRR has partnered with a community advisory board for ongoing discussion of study procedures and recruitment initiatives. This feedback has resulted in over 25 protocol modifications from bidirectional community input and engagement with the study to tailor it to community needs. Revisions include modification of inclusion and exclusion criteria to allow interested, low literacy participants to join, offering written and online platforms for participation in Somali, French, and Creole languages. CoRR adaptations have also implemented a community newsletter to visually provide updated CoRR information, highlight research studies in which CoRR participants have been included, as well as engage CoRR participants regularly. Future developments for CoRR include the establishment of an ad hoc Committee with registry participants to provide another level of safeguarding for enrolled CoRR participants. Conclusion: Responsivity to the needs of the community is vital for the continued development and success of Mayo Clinic CoRR, which has led to a successful ongoing enrollment of underrepresented communities into research studies. By utilizing targeted CBPR, the CoRR demonstrates a proof of concept in recruiting and retaining participants in hard-to-reach demographics with the goal of reducing health disparities in chronic diseases, including cancer. Citation Format: Emelina Asto-Flores, Chelsea Mir, Sandy Goncalves, Giovanna Moreno Garzon, Nuwanthi Heendeniya, Jennifer Crook, Folakemi Odedina. Increasing involvement and accrual in research studies from communities of underrepresented populations through the lens of a community based participatory approach via the Community Research Registry (CoRR) [abstract]. In: Proceedings of the 16th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2023 Sep 29-Oct 2;Orlando, FL. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2023;32(12 Suppl):Abstract nr A038.

Simplifying the information letter in health research to fit the needs of low literacy participants: a Delphi consensus study

Simplifying the information letter in health research to fit the needs of low literacy participants: a Delphi consensus study

EHealth literacy, information sources, and health webpage reading patterns

AbstractA lab‐based experiment was conducted to understand how eHealth literacy and information source affect reading vs. scanning behavior on health webpages. Participants read 15 webpages from commercial, government, and online forum sources while their eye movements were tracked. Negative binomial regression and Kruskal‐Wallis tests revealed that high eHealth literacy participants tend to scan webpages, while low literacy participants tend to read webpages. There were no differences in the tendencies to scan or read among different information sources. Our work shows that observable objective information behavior is attributable to eHealth literacy and may provide additional insights to the measurement of eHealth literacy.

Considerations for Evaluation of Fruit and Vegetable Intake in Low-Literate Spanish-Speaking Participants in USDA Food and Nutrition Education Programs.

Rates of obesity and associated chronic disease are high in Hispanics in the United States. Nutrition education interventions promoting dietary change in underserved populations have been shown to have positive effects on behaviors such as fruit and vegetable (FV) intake, thereby reducing the chronic disease burden. Evaluation tools in the Spanish language to assess the dietary behavior changes made in response to the intervention are important in determining the success of such efforts. Currently, there are no Spanish-language tools focused exclusively on FV intake and behaviors that include features to enhance readability for use in low-literacy participants of US Department of Agriculture (USDA) food assistance and education programs. There is a need for such tools to determine the degree to which programs are able to promote behavior change. In designing these tools, researchers should take into account potential issues that may arise when administered. For example, respondents may have difficulty estimating consumption for mixed dishes and vegetables added to food. To address such issues, researchers should employ strategies to assist respondents to understand what constitutes FV and appropriately identify amount consumed. Addition of images to tools or development of accompanying instruction guides may be helpful. Once developed and tested, such scales may be used with Spanish-speaking participants of USDA food assistance and education programs aimed at improving FV behaviors and ultimately, intake.

Abstract P027: Type 2 Diabetes Status Does nNt Impact Perceived Barriers to Healthy Eating Among Overweight/Obese Hispanic Women

Background: Hispanic women are disproportionately affected by cardiometabolic disease risk factors including increased adiposity. Addressing barriers to dietary change is an important strategy for ensuring success of behavioral weight loss interventions. However, perceived barriers to healthy eating among Hispanic women have not been thoroughly studied, and how a type 2 diabetes (T2D) or prediabetes (preD) diagnosis and HbA1c levels are related to those perceptions are unknown. Objective: To examine the association of perceived barriers to healthy eating for weight loss with HbA1c and T2D status among Hispanic women. Methods: Participants (n=197; 86.9±16.6 kg; 36.6±6.5 kg/m 2 ) of De Por Vida , a culturally-tailored weight loss intervention for adult Hispanic women with or at risk for T2D, completed the Barriers to Healthy Eating (BHE) scale at baseline. The BHE scale was translated into Spanish and slightly modified for use with low-literacy participants. Possible BHE scores range from 22 to 110 for the overall scale, from 11 to 55 for the emotions subscale, from 8 to 40 for the daily mechanics subscale, and from 3 to 15 for the social support subscale, with higher scores indicating greater perceived barriers. Participants were categorized based on their baseline HbA1c concentration as follows: at risk for T2D (n=54; HbA1c <5.7% but history of gestational diabetes, hyperlipidemia or hypertension), preD (n=86; HbA1c ≥5.7% but <6.5%) or T2D (n=57; HbA1c ≥6.5%), regardless of diagnosis in the medical record. Results: Among all participants, total BHE score was 65.3±20.7, and scores for the emotions, daily mechanics, and social support subscales were 33.3±11.7, 24.8±8.3, and 7.4±3.2, respectively. HbA1c concentrations were negatively correlated with BHE total (r=-.13; p=.06), emotional (r=-.14; p=.06), and social support scores (r=-.17; p=0.02). When HbA1c was examined as a categorical variable (i.e., T2D status) there were no significant associations with any BHE scale score. Conclusions: In general, participants’ rated their perceived barriers to healthy eating as relatively important problems to their ability to lose weight. There was no evidence that having a preD or T2D diagnosis was associated with their perception of barriers. Given the significant health and economic consequence of a T2D diagnosis, interventions should better address perceived barriers to healthy eating in the preD and T2D population. Funding source: NIH/NIDDK – 1R01DK099277.

DEVELOPMENT AND EVALUATION OF A MULTIMEDIA TOOL FOR OBTAINING INFORMED CONSENT IN THE GAMBIA: A MIXED METHOD STUDY

BackgroundCommunicating crucial research information to low-literacy research participants in Africa is highly challenging in the context of several factors which make the participants vulnerable to poor comprehension of consent information....

Password creation strategies across high‐ and low‐literacy web users

ABSTRACTResearch has shown that password security practices typically conflict with general usability principles. Though the challenges faced by low‐literacy users when creating and managing passwords are likely to extend beyond those experienced by the general public, little research has been done to explore password usability in this at‐risk group. This survey of 20 low‐literacy participants aims to examine password behaviors within this population, including password creation, recall strategies, and perceptions of password strength and security. It expands on the work of Chisnell and Newby () based on a nationwide survey exploring password use, password creation strategies, and perceptions regarding password security. Thus, this study allows for comparison between password use and perceptions among the broader population and those of users with low literacy skills. These results provide important insights into patterns of use and mental models of password requirements and password security among low‐literacy users.

To What did They Consent? Understanding Consent Among Low Literacy Participants in a Microbicide Feasibility Study in Mazabuka, Zambia.

We conducted a study to review the consenting process in a vaginal microbicide feasibility study conducted in Mazabuka, Zambia. Participants were drawn from those participating in the microbicide study. A questionnaire and focus group discussion were used to collect information on participants' understanding of study aims, risks and benefits. Altogether, 200 participants took part in this study. The results of the study showed that while all participants signed or endorsed their thumbprints to the consent forms, full informed consent was not attained from most of the participants since 77% (n = 154) of the participants had numerous questions about the study and 34% (n = 68) did not know who to get in touch with concerning the study. Study objectives were not fully understood by over 61% of the participants. Sixty four percent of the participants were not sure of the risks of taking part in the microbicide study. A significant number thought the study was all about determining their HIV status. Some participants were concerned that their partners were not on the trial as they were convinced that being on the study meant that that they had a lifetime protection from HIV infection. The process of obtaining consent was inadequate as various phases of the study were not fully understood. We recommend the need for researchers to reinforce the consenting process in all studies and more so when studies are conducted in low literacy populations.

Digitised audio questionnaire for assessment of informed consent comprehension in a low-literacy African research population: development and psychometric evaluation

ObjectiveTo develop and psychometrically evaluate an audio digitised tool for assessment of comprehension of informed consent among low-literacy Gambian research participants.SettingWe conducted this study in the Gambia where a high...

Multimedia Informed Consent Tool for a Low Literacy African Research Population: Development and Pilot-Testing.

BackgroundInternational guidelines recommend the use of appropriate informed consent procedures in low literacy research settings because written information is not known to guarantee comprehension of study information.ObjectivesThis study developed and evaluated a multimedia informed consent tool for people with low literacy in an area where a malaria treatment trial was being planned in The Gambia.MethodsWe developed the informed consent document of the malaria treatment trial into a multimedia tool integrating video, animations and audio narrations in three major Gambian languages. Acceptability and ease of use of the multimedia tool were assessed using quantitative and qualitative methods. In two separate visits, the participants’ comprehension of the study information was measured by using a validated digitised audio questionnaire.ResultsThe majority of participants (70%) reported that the multimedia tool was clear and easy to understand. Participants had high scores on the domains of adverse events/risk, voluntary participation, study procedures while lowest scores were recorded on the question items on randomisation. The differences in mean scores for participants’ ‘recall’ and ‘understanding’ between first and second visits were statistically significant (F (1,41)=25.38, p<0.00001 and (F (1, 41) = 31.61, p<0.00001 respectively.ConclusionsOur locally developed multimedia tool was acceptable and easy to administer among low literacy participants in The Gambia. It also proved to be effective in delivering and sustaining comprehension of study information across a diverse group of participants. Additional research is needed to compare the tool to the traditional consent interview, both in The Gambia and in other sub-Saharan settings.

Literacy Barriers to Colorectal Cancer Screening in Community Clinics

This article examines the relationship between literacy and colorectal cancer (CRC) screening knowledge, beliefs, and experiences, with a focus on fecal occult blood tests (FOBTs). Participants were 975 patients in 8 Louisiana federally qualified health centers. Participants were 50 years of age or older and not up to date with CRC screening; approximately half (52%) had low literacy (less than a 9th-grade level). Participants with low literacy were less likely than were those with adequate literacy to be aware of advertisements promoting CRC screening (58.7% vs. 76.3%, p < .0001) or to believe it was very helpful to find CRC early (74.5% vs. 91.9%, p < .0001). The majority of participants had positive beliefs about the benefits of CRC screening using FOBTs. Participants with low literacy had more perceived barriers to FOBT completion and were more likely to strongly agree or agree that FOBTs would be confusing, embarrassing, or a lot of trouble; however, none of these remained significant in multivariate analyses controlling for relevant covariates. Confidence in being able to obtain an FOBT kit was high among those with low and adequate literacy (89.8% vs. 93.1%, respectively, p = .20); yet multivariate analyses revealed a significant difference in regard to literacy (p = .04) with low-literacy participants indicating less confidence. There was no significant difference by literacy in ever receiving a physician recommendation for CRC screening (38.4% low vs. 39.0% adequate, p = .79); however, multivariate analyses revealed significant differences in FOBT completion by literacy (p = .036). Overall, findings suggest that literacy is a factor in patients' CRC knowledge, beliefs, and confidence in obtaining a FOBT.