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As an overrepresented population on the transplant waitlist, stagnated rates of organ donation registration among Latinxs must be redressed. Promotoras (community health workers), who are effective at advocating and spearheading health promotion efforts in the Latinx community, show promise in their ability to educate about organ donation and donor registration.
This study aimed (1) to develop an interactive, evidence-based program to educate promotoras about organ donation, the need for organ donors in the Latinx American community, and ways to register as deceased organ donors and (2) to train promotoras to lead discussions about organ donation and to promote the act of donor registration.
In partnership with 4 promotoras organizations, the culturally targeted
This novel, theoretically and empirically based intervention leveraged the existing network of promotoras to promote the act of donor registration. Future research should assess whether the module helps increase rates of donor registration within Latinx communities and reduce disparities in access to transplantation.
ClinicalTrials.gov NCT04007419; https://www.clinicaltrials.gov/ct2/show/NCT04007419
Although the number of deceased organ donors in the United States has increased modestly since 2010 [
Since the 2007 revision of the Uniform Anatomical Gift Act making the act of registering as an posthumous organ donor legally binding [
Prior research has underscored the importance of culturally targeted approaches to addressing the specific health beliefs and transplantation-related needs among Latinx communities. For example, Hu et al’s family-based intervention on diabetes self-management among Latinxs yielded successful outcomes, such as improved blood pressure, higher knowledge about diabetes, healthier behaviors, and lowered body mass index [
Promotores de Salud are a network of Latinx lay health educators (or community health workers) who disseminate health information to their communities through interpersonal channels. Indeed, platicas, or small group discussions typically held in homes or local community centers about different health topics, are organized and guided by promotores. In the 1960s, Promotores de Salud emerged out of necessity in low-income neighborhoods with sizable Latinx immigrant populations, to overcome significant barriers to accessing and utilizing health care services [
Promotores de Salud have had demonstrable impacts on health knowledge and behaviors. For instance, they have increased Latinxs’ knowledge of and participation in preventive behaviors for diabetes [
Web-based electronic learning (eLearning) platforms (ie, learning management systems) are highly variable in their features and methods of instruction [
We developed the
The research team comprised Temple University faculty and staff including the principal investigator with expertise in interpersonal health communication and organ donation and transplantation (HG), 2 coinvestigators—a medical anthropologist with expertise in developing culturally targeted interventions in organ transplantation and donation from Northwestern University (EJG) and an internationally recognized expert in deceased organ donation (LS)—a creative coordinator (GPA), a project coordinator (CA and JT), and an undergraduate research assistant (PJK). The Gift of Life Institute, a Philadelphia-based international training center with extensive experience designing and developing Web-based educational programs for donation professionals, aided in curriculum design and module interface development (TD and RN).
1. Recruited 4 promotore organizations as community-based partners.
2. Conducted cognitive interviews to develop and refine focus group moderator’s guides.
3. Conducted and analyzed 12 focus group discussions—8 with mature Latinas and 4 with promotoras (N=98).
4. Theoretically grounded in Organ Donation Model and Vested Interest Theory.
5. Curriculum development—integrated theories, extant literature, and formative research findings.
6. Script writing—identified didactic and skills-based sections of the module and strategically placed embedded media.
7. Design features developed in consultation with Gift of Life Institute and ensured cultural and linguistic targeting
8. Filming preparation including hiring and training actors and coordinating with production team.
9. Filming, editing, and embedding content in learning management system.
10. Soft launch for testing with Temple University team.
11. Beta-test (N=10) for acceptability, cultural appropriateness, platform navigability.
12. Integration of beta-test results into final version of module.
13. Assessment of direct effects of module on Promotoras’ (N=40) organ donation attitudes and knowledge, donor registration behaviors, and confidence discussing donation.
14. Assessment of indirect effects of module on mature Latinas’ organ donation knowledge and attitudes, and donor registration behaviors.
15. Assessment of sustained effects of module on Promotoras’ organ donation attitudes and knowledge, donation behaviors, and confidence discussing donation
We partnered with 4
Theoretical framework of
VIT similarly delineates the relationships among and between constructs thought to predict donor designation [
These theoretical constructs are incorporated throughout the module. Short videos created by the Health Services and Resources Administration’s Division of Transplantation as well as narratives (ie, anecdotal and expert testimony) and statistical messages (ie, data about the need for organ donors) are included to increase and enhance
Screenshot of the login page of
Produced in Spanish (with English subtitles), the module was designed to achieve 3 specific learning objectives. After completing the module, we anticipated that learners would (1) demonstrate high levels of knowledge of organ donation and donor designation; (2) confidently engage members of their community in conversations about organ donation; and (3) effectively persuade individuals to designate themselves as posthumous organ donors via a donor card, drivers’ license, or online registry. Guided by a female narrator
The curriculum consists of 2 components: a skills-based communication component and a didactic educational component. The communication skills needed to effectively discuss donation and share educational content were modeled in videos depicting a
The skills-based component provides instruction on the communication skills needed to effectively engage participants during
Section and content | Embedded media | |
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Review of learning outcomes | Argentinian PSAa depicting an older man and his dog |
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Benefits of donation to donor, recipient, donor family, society | HRSAb Video “Organ Donation and Transplantation: How Does it Work?” |
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Information on the need for donors, the national transplant waiting list, the donation process | —c |
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Information on how to register as an organ donor and the importance of family discussion about donor designation | Testimonial: Latinx organ recipient |
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How to prepare for a platica | Platica dramatization |
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Communication skills: assess existing knowledge, ask open-ended and probing questions, provide factual information, correct myths and misinformation, and invite questions | Testimonial: transplant physician |
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Addressing myths: medical negligence, irreversibility of brain death, moral failure of organ recipient, undocumented immigrant eligibility, religious objections, black market organ trafficking | Testimonial: Latina mother of a deceased donor |
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How to converse with the family about end of life decisions | — |
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Statements concern: medical negligence, prohibitive religious beliefs, prohibitive age and illness status, donation costs, infringed funeral wishes, inelligibility of the undocumented person, precedence of advanced directives | True/False activity |
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Communication skills: gauging support, emphasize importance, correct myths and misinformation, support individual choice, remain nonjudgmental, provide instruction on how to register | Second part of platica dramatization |
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Methods of donor designation: DMVd, online, a donor card | — |
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Addressing common reasons people do not designate | — |
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How to close the platica | — |
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Reminder to revisit |
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aPSA: public service announcement.
bHRSA: Health Resources and Services Administration.
cNot applicable.
dDMV: Department of Motor Vehicles.
The didactic component provides basic information about organ donation and transplantation and the need for donors in the Latinx community. It also addresses concerns about organ donation and donor designation commonly shared by the target population, as revealed through the extant literature and a series of 12 focus groups we conducted with
The didactic component featured several topics during the dramatized
Screenshot of a platica dramatization from the
A primary goal of module development was ensuring its cultural appropriateness and receptivity by the target population. Throughout the scriptwriting and postproduction process, Spanish-speaking Latinx consultants and our Latinx community partners offered guidance to ensure that the module and its content were realistic, culturally targeted, and linguistically congruent [
A certificate of completion is provided upon module conclusion. The
Strategies for achieving cultural and linguistic appropriateness.
Strategy | Design feature | Content feature |
Peripheral | Branding and color schema | Use of Latina narrator (narradora) |
Evidential | —a | Videos and testimonials from Latina organ recipient, donor family, and transplant physician |
Linguistic | — | Spanish with English subtitles; available Spanish on screen text |
Constituent involving | Feedback from promotoras and leadership from promotora organizations | Integrated feedback from promotoras and leadership from promotora organizations, promotoras as module actors |
Sociocultural | — | Module addresses commonly cited myths about organ donation found in literature and focus group data |
aNot applicable.
The original version of the module was timed at 1 hour, 14 min, and 29 seconds. The module underwent beta-testing from September 17, 2018, to October 12, 2018. Beta-testing involved full navigation of the module and completion of a postmodule questionnaire measuring user experience and soliciting feedback for improvement. A total of 10 people participated in beta-testing including 3 members of the leadership teams at partnering
The beta-test questionnaire comprised 40 questions evaluating perceptions of the module; cultural sensitivity; platform navigability; and sociodemographics including job role, length in job role, and preferred language spoken at home. See
Perceptions of the module were assessed through 13 5-point Likert questions (1—
Participants were then asked to identify which segments (ie, true/false activity and testimonials) could be shortened or removed through 8 3-point Likert-type questions (1—
Most beta-testers spoke Spanish and English equally at home (7/10) and identified as
Half of the respondents (5/10) suggested removing the true/false activity, and 40% (4/10) of the respondents suggested removing the interview with a transplant expert. Most (8/10) respondents recommended definitely not removing the segments describing personal experiences with donation (mother of an organ donor) and transplantation (liver transplant recipient).
In addition to scale items, responses to open-ended questionnaire questions provided rich, contextualizing data suggesting improvements to the original module.
We gleaned several lessons from themes emerging from the open-ended responses. First, although beta-testers stated the module was informative and interactive, most found the module to be too lengthy and offered suggestions on content that could be shortened or edited out. Moreover, they noted that the most important messages of the module included life-saving opportunities of organ donation and the need for Latinx donors; they also liked the testimonials included in the module.
Selected responses to open-ended questions.
Open-ended question | Selected responses |
Please use the space below to write down any suggestions on ways to improve the training program. |
“This was very well done. I learned a lot and registered as an organ donor right at the beginning after the video with the dog.” “I wouldn't entirely remove the videos with the doctor and the mother who lost her son, but would recommend cutting them down. I'd also cut down some of the conversation led by the promotora. That section was definitely too long.” “The module is very well done, with interesting ways to present the topics and with several personal stories. I did not feel that it was boring. To improve it, I wonder if there is any way to connect the promoters [sic] with a local organization if they want to learn more or become more involved in this area.” |
What, if anything, was missing or did not feel right for you in this module? |
“I can't think of anything really. There was just the length that was way too long for me.” “I was not sure if the promotora was saying “traNsplante” or “trasplante”. The correct pronunciation would be trasplante for a transplant.” |
What do you think is the most important message in this video for people who are unfamiliar with the topic of organ donation and transplantation? |
“One person can make a difference.” “That organ donation/transplantation saves lives and is definitely something to consider and talk to others about.” “The video explains the importance of organ donation in the Latino community and the need that exists in the community of more Latino organ donors.” “The myths. The amount of persons a donor can help and tissue, skin, etc. donations” |
What did you like most about the module? |
“I like that the module is interactive and presents the information in several ways.” “The information that older people [can be] included as donors.” “The real people interviews.” “The participation of the people in the talk and the confidence that the promoter gave.” “Informative in a relaxed, friendly environment” |
What did you like least about the module? |
“A lot of explanations from the host... some of the content was then repeated in the videos (e.g., about how to register as an organ donor).” “It needs to be cleaned up a bit to be a bit shorter.” |
Beta-testing offered valuable feedback about user experience, acceptability, and content. To prepare the module for implementation and evaluation, we made several modifications. For example, we modified the module by increasing the font size for the true/false activity, enabling sensible advancement to subsequent sections for ease of module progression, including removing numbered sections on the menu bar, adding English subtitles, and disabling user manipulation of the progress bar. To reduce module length, we edited testimonials from the mother who had donated her deceased son’s organs and the transplant expert. We moved the animation depicting 3 ways to donate and the true/false activity to appear on the homepage after module completion as supplemental, rather than required material. After revisions, the
Design elements in original and final versions of the module.
Design element | Original version | Final version |
Subtitling | Absent |
Added in English with transcript of script available at all times in a togglable tab |
Advancement through the module | Unclear and confusing numbering |
Logical numbering of each section Explicit instructions to progress through module |
Progress bar | User able to manipulate |
Disabled ability to manipulate |
Older man and the dog video | Section 1 |
No change |
HRSAa video: “Organ Donation and Transplantation: How Does it Work?” | Section 1 |
No change |
Testimonial: Latinx organ recipient | Section 2 |
No change |
Platica dramatization | Sections 3 and 5 |
Appear closer together in sections three and four |
Testimonial: transplant physician | Section 3 |
Retained in section three but tailored testimonial to address concerns of a black market to reduce length |
Testimonial: Latina mother of a deceased donor | Section 3 |
Retained in section three but reduced in length |
True/False activity | Section 4 |
Removed from module and included as a supplemental activity Font sized increased |
Three ways to donate animation | Embedded within the module |
Removed from module and included as a supplemental activity |
aHRSA: Health Resources and Services Administration.
The module is currently undergoing evaluation of its direct, indirect, and sustained effects. In the first phase of evaluation, we will recruit 40
After completing phase 1, the same
To measure the module’s sustained impact on
Several challenges arose in the development of
The decision to incorporate multiple sources of feedback on the module’s content also led to a longer overall running time than was originally planned. Although the final version of
Screenshots of the Promotoras de Donación eLearning module.
Post Module Questionnaire.
Health Resources and Services Administration’s Division of Transplantation
Organ Donation Model
Office of Minority Health
Theory of Reasoned Action
Vested Interest Theory
This study was supported by the Health Resources and Services Administration’s Division of Transplantation (HRSA/DoT R39OT29878, PI: Traino). The content is solely the responsibility of the authors and does not necessarily represent the official views of HRSA/DoT.
All authors participated in research design, writing of the paper, performance of the research. HG, EG, PJK, and JT participated in data analysis.
None declared.