The demand for organs continues to supersede the supply, making interventions to increase the number of Americans enrolled in state organ donor registries, with signed organ donor cards, or with “organ donor” indicated on their driver’s license (ie, donor designation) timely and meritorious pursuits. Despite the increased availability of organs for transplantation owing to the national opioid crisis [1], >106,000 Americans remain on the waiting list for a solid organ transplant [2]. Although racial and ethnic minorities represent 60% of the transplant waitlist, non-Hispanic White population has historically received the largest proportion of organ transplants (62%) [2]. Organ shortages are particularly acute for Latinx patients who are disproportionately affected by end-stage liver and kidney diseases [3,4] and who currently comprise 20.7% of the waitlist but have received only 13% of the transplants performed to date and 17.9% of the transplants performed in 2021 [2]. Although the COVID-19 pandemic has affected the operation of many transplantation centers, which may have affected current trends, historically, Latinx populations have authorized deceased donor organs at lower rates than non-Hispanic White population [2], even though these populations have expressed a willingness to donate organs posthumously [5,6]. Only 12.8% of all deceased organ donors have been of Latinx descent [2].

The revised Uniform Anatomical Gift Act, which made donor designation legally binding, allows people to register as a posthumous organ donor on a driver’s license, organ donor card, or on a web-based registry [7]. This revision also made increasing the number of registered organ donors a national imperative, as registered donors were now more likely to be converted to actual posthumous donors. Highlighting the long-standing need for transplantable organs in the United States, changes to foster transparency and reliability in evaluating an organ procurement organization’s performance recently proposed to the federal rule, CMS-2019-0187, also seeks to increase system accountability and double organ supply by 2030 [8]. As of August 2022, in total, 51% of Americans were registered organ and tissue donors, and this number has steadily increased since 2008 [9]. In 2022, a total of 56% of the registered donors donated organs upon death [9]. No national data exist on registration rates by racial and ethnic subgroups. Using conversion rates as a proxy, donor designation among Latinxs who ultimately donated after death ranged from 6.4% to 40% [10,11], which is much lower than the national rate (51%).

Numerous barriers to donor designation have been identified among Latinxs. Mistrust of the medical establishment and the organ distribution system and lack of knowledge of organ donation have been cited as barriers by most racial and ethnic minority groups, including Latinxs [12,13]. Rumors of organ trafficking in Latin American countries and culturally based aversions to discussions about organ donation and death have also been reported [14,15]. A recent study found that Latinx populations may not know where or how to register, even if they are willing to do so [16]. Only 3 out of every 1000 deaths occur in a manner that yields a transplantable organ [17] and improved patient and graft outcomes with receipt of organs from Latinx populations [18]. Culturally and linguistically appropriate interventions are required to increase donor designation within this subgroup of the American populace [11,19-21]. To address this need, we created an e-learning module on organ donation, Promotoras de Donación, targeting the existing network of Latinx lay health educators or Promotores de Salud [22].

Promotores de Salud (ie, promotores) are trusted sources of health information in Latinx communities. As lay health educators or community health workers, promotores typically work or volunteer for health and community-based organizations; some large academic institutions also maintain community health workers’ programs. Promotores are trained members of local and regional health and public health workforces created to provide culturally and linguistically appropriate health information and improve access to and use of health care services among low-income Latinx communities. Promotores have proven to be an effective means of increasing knowledge of numerous health topics and health-promoting behaviors and improving chronic disease management [23-26]. Largely underutilized, Promotores de Salud are considered a potentially fruitful approach to mitigating inequities in health and health care outcomes for Latinx communities [27]. However, as lay members of the community, training is required to ensure that promotores have the requisite knowledge and skills to engage community members in conversation about donation and other health topics.

Our overall objective was to leverage existing Promotores de Salud programs to increase donor designation rates in Latinx communities. The web-based e-learning module, Promotoras de Donación, was developed to address gaps in knowledge and correct misinformation about organ donation identified in focus group interviews with promotoras and mature Latinas [16,22]. (Note: the change in spelling from promotores to promotoras reflects the focus on Latinx women for these studies.) Specifically, the culturally targeted e-learning module was designed to provide basic information about organ donation and donor designation and to train promotoras in the communication skills needed to effectively initiate and maintain conversations about organ donation and promote the act of donor designation among family, friends, and community members.

This paper describes the results of 2 studies that evaluated the direct and indirect effects of the module. To assess the module’s direct effects, we administered brief surveys of the participating promotoras before and after completing the module (study 1). Trained promotoras were then asked to hold at least 2 group conversations about organ donation and donor designation with mature Latinas (women aged ≥50 years) in their communities (study 2). Perceptions of the conversations and attitudes toward organ donation and donor designation were collected via a survey before and after each group discussion to assess the indirect effects of the module. The findings from these studies provide a better understanding of the utility of promotoras in disseminating information about organ donation and promoting donor designation in Latinx communities. The findings can also help guide future modifications and use of the newly developed Promotoras de Donación e-learning module.

The protocols for both studies were approved by the ethics board of Temple University (international review board #23844). This study has been registered with ClinicalTrials.gov (NCT04007419). The Transparent Reporting of Evaluations with Nonrandomized Designs checklist was used to guide the reporting of both studies [32].

The Promotoras de Donación e-learning module was developed in partnership with 4 community-based organizations, with organizational leadership and active promotoras informing all aspects of the module’s design, development, and implementation. This evaluation assessed both the direct effects of the module on participating promotoras’ knowledge of and support for organ donation and donor designation and confidence in communicating about organ donation and encouraging donor registration as well as indirect effects on attendees of the trained promotora-led small group discussions with mature Latinas. Although modifications to the module were clearly identified, the results suggest that it increased promotoras’ preparation for and confidence leading pláticas, ultimately leading to more positive organ donation sentiment among plática attendees. However, this resulted in only 21 completed donor registration forms.

Specifically, we found small, nonsignificant changes in overall knowledge of and support for organ donation and a large and statistically significant increase in communication confidence among participating promotoras. It is unknown why we found small and nonsignificant increases in knowledge of organ donation. The knowledge items chosen reflect the information contained within the module, information deemed critical to understanding the shortage of organs for transplantation, and the need for donors in the Latinx community. Knowledge increases were observed in items assessing the existence of the national organ matching system, the disproportional prevalence of Latinx organ transplants, the equitable and ethical distribution of organ matching, and that registration include agreement to the donation of organs, tissues, and eyes. Thus, the module aided in demystifying organ donation, especially in relation to misinformation regarding discrimination in the organ transplant system. However, knowledge decreased in items querying about the need for a license for donor designation, prevalence of mortality owing to lack of organs, cost associated with donor designation, Latinxs’ disproportional wait times for organ transplantation, and criteria for becoming a donor. Participant evaluations offered some insights into these findings. In particular, a considerable proportion of respondents felt that the module was too long and tried to cover too much. Therefore, the observed results may simply be a byproduct of information overload and not a true reflection of knowledge of organ donation, or may reflect how certain topics resonate more clearly than others in this specific participant group. Notably, knowledge of the steps to become an organ donor and belief that the process of registering is easy to perform increased in mature Latinas from pre- to post-plática by 30.7% and 15.2%, respectively.

A statistically significant increase was found in promotoras’ composite communication confidence scores from pre- to posttests, as did scores for each individual item. Most notably, items assessing confidence in answering questions about donation, providing information about organ shortages, encouraging and instructing people to become donors, and ending a discussion about organ donation demonstrated statistically significant increases. Although all communication skills exhibited increases in confidence from pre- to posttest, we note that arguably the most important communicative skills—to start the discussion, to discuss the need for Hispanic donors, and to provide instructions on how to register as an organ donor—did not exhibit the largest gains in confidence. Future iterations of the module should bolster education and demonstration of these specific skills.

The second half of the module portrays a promotora engaging in discussions about organ donation and donor registration with a group of mature Latinas. Such narrative storytelling is a valuable educational tool defined by individuals who share their experiences through autobiographical narratives related to a specific theme [33,34]. Storytelling can engage participants in a way that is unique from traditional didactic learning, especially in individuals with low health literacy [33]. Specifically, narrative theory [32] asserts that the deep engagement and immersion of the audience with the storyteller allows audience members to identify with the narrator and his or her experience, which facilitates learning. In the Latinx context, narrative storytelling has been an effective, culturally acceptable method for promoting health behavior change in English- and Spanish-speaking individuals [34,35]. This has also been proven to be effective in a promotora context as well [36]. The conversations portrayed in Promotoras de Donación included clear indication of specific skills needed to effectively communicate the need for organ donors in the Latinx community and to encourage and instruct others to register as posthumous organ donors. We suspect that the narrative format, in combination with the skills demonstration, produced the results observed in participants’ communication confidence. However, further investigation is needed to determine the specific aspects of the intervention that are most effective.

To assess the indirect effects of the e-learning module, promotoras from the first study were asked to facilitate small group discussions on organ donation with mature Latinas in their communities. Most participating promotoras continued to express positive attitudes toward organ donation months after completing the e-learning module, believed it was important for their communities, and did not report common barriers such as family disapproval and medical mistrust. Upon postassessment, most promotoras viewed their small group discussions as a success, and more than half reported a greater support for organ donation after the facilitation. Even though a small minority of promotoras did not feel more prepared or more confident after leading the discussion, for most plática attendees, the discussions led to increased comfort with organ donation and greater willingness to register as posthumous organ donors.

Subjective willingness did not translate into behavioral action; only 21 plática attendees completed an organ donation registration form despite it being available in English and Spanish. Although women tend to serve as the main source for health-related knowledge in Latinx families [19], the centrality of family in Latinx culture may have affected their willingness to complete an organ donation form immediately following the discussion without including their families in the decision-making process. The taboo nature of discussing death, especially posthumous donation, as a family may also have made family involvement difficult [16]. Despite one’s personal willingness to register, knowing that their family may not be willing to engage in a discussion to affirm their decision might explain why some mature Latinas who expressed willingness to register ultimately did not complete a registration form. It may also be that the decision to designate oneself as a posthumous organ donor takes longer and is more complex than a single exposure to factual information about organ donation would change. Theories that account for small changes in knowledge and attitudes along the path to larger behavioral changes (ie, donor designation), such as the Transtheoretical Model [37], may be more appropriate in this context.

Another related key concern that some Latinxs have is the fear that their families can legally overturn their decision to become a donor [16], which may also influence a willing person to ultimately decide not to register. Citizenship status and fear surrounding deportation also can present barriers to registration for any of the plática attendees who may have been undocumented. We did not collect data on citizenship owing to the national sentiment toward immigrants during the study period. However, future research should assess citizenship to elucidate its role in donor designation. We recommend the use of proxy measures, such as qualification for federal stimulus payments, rather than directly asking about citizenship as many individuals may be hesitant to share their status.

These findings suggest that participation in the group conversations with trained promotoras changed attendees’ perceptions of organ donation. For instance, most attendees reported that the discussion helped them understand the need for donors, convinced them that organ donation saves lives, and inspired them to want to hold family discussions about organ donation. Furthermore, more than half of the plática attendees reported plans to sign up to be an organ donor in the next month. Future research should include partnerships with regional Organ Procurement Organizations so that an accurate, objective assessment of participants’ donor designation status may be ascertained.

This multisite study recruited promotoras from organizations located in regions with Latinx populations with differing nativity, reflecting the diversity of the Latinx community and increasing the generalizability of the study. The module was created in partnership with 4 promotora organizations that were engaged throughout the developmental process—from the formative research needed to inform the module’s content to the design and implementation of the evaluation—to ensure that the module provided culturally and linguistically appropriate education about organ donation and donor designation. However, our findings must be considered in the context of this study’s limitations. Although randomized controlled trials are considered the gold standard in evaluations of behavioral interventions owing to their ability to control for potentially confounding factors and bias [38], the community-based setting of this research limited our ability to execute a randomized controlled trial. Pragmatic trials such as the one reported herein sacrifice some degree of internal validity for increased external validity and the opportunity to determine the effectiveness of interventions under real-world conditions [39,40]. In addition, the study samples were small and vulnerable to selection bias.

Findings from these 2 studies suggest that trained promotoras may be feasibly leveraged to help educate Latinx communities about organ donation and promote donor designation. The 25 trained promotoras participating in study 2 reached an average of 15 mature Latinas. If all 40 promotoras participating in study 1 held pláticas, an estimated 600 mature Latinas would have been reached. Moreover, the preliminary data from this test of the Promotoras de Donación e-learning module supports its future modification and expansion. However, our findings also suggest that the module may need revision before implementing a larger, more definitive evaluation. Specifically, the didactic component requires shortening and reorganization to create a more user-centered, less burdensome learning experience. Participating promotoras also requested additional training and specific training in how to effectively dispel strongly held myths and misinformation about organ donation. As the module was designed as a web-based learning experience, it can be made accessible to lay health educators and community health workers through a mobile device or internet; this capability is crucial as observed throughout the COVID-19 pandemic.

Future research should focus on understanding the ways in which promotoras use the skills advanced in the module in conversations about donation. Future studies should also seek to understand the module’s effects on more distal outcomes, that is, the impact trained promotoras have on knowledge of and attitudes toward organ donation and on rates of donor designation in their communities. Once its effectiveness is established, the module could be incorporated into routine promotoras training programs across the nation with minimal difficulty, including the web-based training offered and maintained by the United States Department of Health and Human Services’ Office of Minority Health [41].

The results of this study highlight the benefits of partnerships with community-based organizations. Regional Organ Procurement Organizations should consider establishing and maintaining strong partnerships to educate the public about organ donation, engender positive attitudes toward donor designation, and encourage donor designation. In this study, 25 trained promotoras engaged 375 community members. Coordinating training to coincide with national organ donation campaigns, such as the Donate Life campaign implemented annually in April, has the potential to reach thousands of people and inspire local and regional conversations that may lead to both increase in donor designation and the number of lives saved through increased organ availability and access to transplantation.