An interactive, bilingual, culturally targeted website about living kidney donation and transplantation for hispanics: development and formative evaluation

Elisa J Gordon, Joe Feinglass, Paula Carney, Daney Ramirez, Maria Olivero, Kate O'Connor, Jessica MacLean, James Brucker, Juan Carlos Caicedo, Elisa J Gordon, Joe Feinglass, Paula Carney, Daney Ramirez, Maria Olivero, Kate O'Connor, Jessica MacLean, James Brucker, Juan Carlos Caicedo

Abstract

Background: As the kidney shortage continues to grow, patients on the waitlist are increasingly turning to live kidney donors for transplantation. Despite having a disproportionately higher prevalence of end-stage kidney disease (ESKD), fewer waitlisted Hispanic patients received living donor kidney transplants (LDKTs) than non-Hispanic whites in 2014. Although lack of knowledge has been identified as a barrier to living kidney donation (LKD) among Hispanics, little is known about information needs, and few bilingual educational resources provide transplant-related information addressing Hispanics' specific concerns.

Objective: This paper describes the process of developing a bilingual website targeted to the Hispanic community. The website was designed to increase knowledge about LKD among Hispanic patients with ESKD, their families, and the public, and was inspired by educational sessions targeted to Hispanic transplant patients provided by Northwestern University's Hispanic Kidney Transplant Program.

Methods: Northwestern faculty partnered with the National Kidney Foundation of Illinois for expertise in ESKD and Hispanic community partners across the Chicago area. We established a Community Advisory Board (CAB) of 10 Chicago-area Hispanic community leaders to provide insight into cultural concerns and community and patients' needs. Website content development was informed by 9 focus groups with 76 adult Hispanic kidney transplant recipients, living kidney donors, dialysis patients, and the general Hispanic public. The website development effort was guided by community input on images, telenovela scripts, and messages. After initial development, formal usability testing was conducted with 18 adult Hispanic kidney transplant recipients, dialysis patients, and living kidney donors to identify ways to improve navigability, design, content, comprehension, and cultural sensitivity. Usability testing revealed consistently high ratings as "easy to navigate", "informative", and "culturally appropriate". Bandura's Social Cognitive Theory and Gagne's Conditions of Learning Theory guided website design to facilitate adult learning.

Results: The website, "Infórmate: Living Kidney Donation for Hispanics/Latinos" (Infórmate Acerca de la Donación de Riñón en Vida), includes six sections: Treatment Options, Donation: Step-by-Step, Benefits and Risks, Financial Issues, Immigrant Issues, and Cultural Beliefs and Myths. Sections host 5-10 interactive messages that summarize important points and link to detailed explanations for users interested in learning more about specific issues. The website hosts interactive videos, multimedia testimonials, telenovelas, games, and quizzes. Photographs and videos of Hispanic living donors are shown to promote pride and ownership.

Conclusions: Our success in developing a website was driven by a development team with expertise in transplantation, social science, evaluation, instructional design, and Hispanic perspectives, and by a patient-centered approach toward content and design. Based on feedback from usability testing and our CAB, the website is sensitive to Hispanic cultural sensibilities. We have nearly completed a formal evaluation of the website's impact on increasing Hispanics' knowledge about LKD and will disseminate the website thereafter.

Keywords: Hispanic Americans; Internet; Latino; culturally targeted; eHealth intervention; ethics; ethnic groups; immigrants; informed consent; kidney transplantation; living donors; multimedia.

Conflict of interest statement

Conflicts of Interest: None declared.

Figures

Figure 1
Figure 1
Screenshot of video of a priest is included to illustrate the authority figures represented.
Figure 2
Figure 2
Screenshot illustrating one of the drag-and-drop games.
Figure 3
Figure 3
Screenshot from the Telenovela, "An Anguished Cry” (“Grito de Angustia”).
Figure 4
Figure 4
Screenshot illustrating one of the interactive modules of a woman talking about reproduction after donation.
Figure 5
Figure 5
Screenshot from lifestyle changes discussion of the Benefits and Risks section, which addresses a concern about being able to play sports after donating. Screenshot also illustrates the interactive nature of this kidney-shaped module containing pictures that provide more information when selected.

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