Try out PMC Labs and tell us what you think. Learn More. As an overrepresented population on the transplant waitlist, stagnated rates of organ donation registration among Latinxs must be redressed. Promotoras community health workerswho 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, Mature women San Bonifacio 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.
Formative work, existing literature, the Vested Interest Theory, and the Organ Donation Model guided curriculum development. In partnership with the Gift of Life Institute and regional promotoras, the curriculum was deed, filmed, and developed in a visually appealing module interface.
The module was beta-tested with promotoras before launch. The module comprised 6 sections including various activities and videos, with the curriculum divided into a skills-based communication component and a didactic educational component. 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 Mature women San Bonifacio within Latinx communities and reduce disparities in access to transplantation.
Although the of deceased organ donors in the United States has increased modestly since [ 1 ], a shortage of transplantable organs still remains. The dearth of available organs for transplantation is particularly acute among Latinx populations, an increasingly accepted and common term to represent Hispanic and Latino communities [ 2 ].
The need among older Latinxs is particularly acute.
Since the revision of the Uniform Anatomical Gift Act making the act of registering as an posthumous organ donor legally binding [ 9 ], much like an advance directive or living will, it has become an even more critical first step to increasing the of individuals converted to actual donors and the of organs available for transplant.
Donor deation rates among Latinxs have remained much lower than the national average. For instance, a retrospective cohort study of deceased donation decisions found that 6. Although Latinxs in the United States come from Mature women San Bonifacio countries of origin and have distinct immigration histories, the extant literature describes this population as a homogeneous unit. Commonly cited barriers to donation among this population include low levels of acculturation, religious beliefs, mistrust of the medical and organ distribution systems, and cultural taboos regarding discussions about death [ 13 - 15 ].
Encouraging donor deation among all ethnic groups is imperative to improve access to transplantation for all patients on the waitlist. However, increasing the of Latinx donors is of particular import, given the improved graft outcomes associated with receipt of organs from this subgroup of the population [ 16 ]. Prior research has underscored the importance of culturally targeted approaches to addressing the specific health beliefs and transplantation-related needs among Latinx communities. Gordon et al created and evaluated a culturally targeted website about living kidney donation and transplantation for Latinx patients; exposure to the website in combination with transplant education generated ificantly higher transplant knowledge compared with transplant education alone [ 18 ].
Other research aimed at increasing organ donation among Latinx populations has suggested women as ideal champions for promoting donor deation, given their dominant position in health-related decision making and their increased willingness to donate and discuss donation with family Mature women San Bonifacio [ 141920 ].
A culturally targeted elearning module on organ donation (promotoras de donación): de and development
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 s, Promotores de Salud emerged out of necessity in low-income neighborhoods with sizable Latinx immigrant populations, to overcome ificant barriers to accessing and utilizing health care services [ 21 ]. Promotores are a cost-efficient and effective workforce that expands the reach of the health care delivery system.
As such, promotores have typically become the first point of contact between Latinx community members and formal health institutions. Promotores de Salud have had demonstrable impacts on health knowledge and behaviors. Furthermore, a growing Mature women San Bonifacio of evidence suggests promotores can be effectively engaged in the research process and, once trained, can be successful partners in study implementation [ 30 - 35 ].
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Promotores have been trained to provide culturally and linguistically appropriate information to Latinx Americans about a wide variety of health-related topics and to promote behaviors to improve health and prevent illness, disease, and disability [ 3637 ]. We also anticipated that mature Latinas would be influenced to deate themselves as posthumous organ donors and support donation within their families, as women are the primary source of information about health and health care in Latinx families.
In addition, women, in particular, express greater willingness to register as deceased organ donors [ 1419 ] and are more likely to register, be converted to actual donors, and discuss donation with their families [ 1419 Mature women San Bonifacio, 20 ]. Web-based electronic learning eLearning platforms ie, learning management systems are highly variable in their features and methods of instruction [ 38 ]. Such customizability allows developers to remain sensitive to the practical and cultural needs of the target audience and helps ensure ease of use and engagement with material.
Interactive computer- and Web-based public health and patient education trainings [ 3839 ] have successfully addressed the learning needs of older adults [ 40 - 42 ], underserved populations [ 1843 - 48 ], and those with chronic communicable disease [ 49 ], especially when culturally informed [ 50 ]. studies employing Web-based interventions with targeted features to effectively train promotoras have demonstrated that eLearning le to wider reach [ 51 ] and impact in Latinx communities [ 52 ].
The feminine form of the term promotor was chosen because most community health workers are female, as are our target audiences. The module is deed to increase rates of donor deation within Latinx communities across the United States and to ultimately reduce disparities in Mature women San Bonifacio among Latinxs. We present the module de, structure, cultural foundations, the of beta-testing, and the plan for modifying the module in response to the feedback received.
The research team comprised Temple University faculty and staff including the principal investigator with expertise in interpersonal health communication and organ donation and transplantation HG2 coinvestigators—a medical anthropologist with expertise in developing culturally targeted interventions in organ transplantation and donation from Northwestern University EJG Mature women San Bonifacio an internationally recognized expert in deceased organ donation LS —a creative coordinator GPAa project coordinator CA and JTand an undergraduate research assistant PJK.
The Gift of Life Institute, a Philadelphia-based international training center with extensive experience deing and developing Web-based educational programs for donation professionals, aided in curriculum de and module interface development TD and RN. Curriculum development—integrated theories, extant literature, and formative research findings. Script writing—identified didactic and skills-based sections of the module and strategically placed embedded media. De features developed in consultation with Gift of Life Institute and ensured cultural and linguistic targeting.
Filming preparation including hiring and training actors and coordinating Mature women San Bonifacio production team. Each site was selected based on established relationships with local promotoras organizations, cost, and representation of Latinxs from different countries of origin.
Leadership and promotoras from each organization met virtually with the Philadelphia-based research team on a quarterly basis for updates on study progress and discussion of challenges and next steps. Partners also provided feedback on study processes including recruitment plans and materials, the content of study instruments, Spanish translations, branding, module content, and beta-testing. Promotoras organizations guided the peripheral, evidential, linguistic, and sociocultural strategies employed to ensure the resulting module was culturally Mature women San Bonifacio and linguistically congruent [ 54 ].
Proposed by Morgan and Miller [ 5556 ], the ODM is grounded in the Theory of Reasoned Action TRA and highlights the importance of donation intentions on the act of becoming a deated organ donor. The model posits that attitudes toward and knowledge about organ donation influence deation intentions [ 5556 ]. The model has found support in empirical tests among non-Hispanic whites and, in a slightly modified form, among African Americans [ 57 - 60 ]. VIT similarly delineates the relationships among and between constructs thought to predict donor deation [ 61 ].
VIT has been used to help explain the discrepancy between highly positive attitudes toward donation and low rates of donor deation. Specifically, VIT posits that the relationship between donation-related attitudes and low donor deation rates is moderated by perceptions of personal importance ie, vested interest.
VIT delineates 5 dimensions of vested interest : stake perceived positive and negative consequences associated Mature women San Bonifacio a given issuesalience vividness and accessibility of the issueself-efficacy perceived ability to overcome behavioral barrierscertainty belief that the perceived consequences will be realizedand immediacy belief in the imminent manifestation of those consequences [ 62 ]. Scholars recommend the application of VIT to understand organ donation deation behaviors, focusing on the first 3 dimensions and indicating that self-efficacy in deating oneself as a donor proved a strong predictor of donor registration [ 63 - 65 ].
We conceptualize VIT constructs of stake, salience, and self-efficacy as representing awareness of the benefits of donation, recognition of the importance of and need for organ donors in the Latinx community, and confidence in making a decision about donation and donor deation.
These theoretical constructs are incorporated throughout the module. To increase self-efficacy, the module demonstrates the skills needed to introduce and manage platicas about organ donation through videos that model such discussions. VIT constructs are included in illustrations of the discrete skills needed to effectively present the need for Latinx donors saliencearticulation of the benefits of donation stakeand presentation of instructions for donor registration self-efficacy.
Interactivity is an essential feature of learning in online environments and can support the pace at which the content is presented and enacted, development of associations between existing knowledge and acquisition of Mature women San Bonifacio information, reinforcement and refinement of newly acquired skills, guidance through the content learned, and enjoyment of the educational experience [ 66 - 68 ].
In addition, we accommodated multiple learning styles by incorporating a variety of pedagogic approaches into the module. See Multimedia Appendix 1 for snapshots of its general elements. Produced in Spanish with English subtitlesthe module was deed to achieve 3 specific learning objectives. Table 1 lists the subjects covered within each section and the embedded media before the final version of the module after beta-testing.
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 promotora leading a platica about organ donation and transplantation and promoting donor registration see Figure 3.
We employed and trained 7 promotoras from our local partnering organization to portray the roles of the promotora and platica attendees. In collaboration with the partnering organizations, scripts were developed to train the promotora actors and incorporate cultural concerns revealed in Mature women San Bonifacio formative focus group discussions throughout the module.
The actors were trained weekly in October and Novemberand the videos were filmed in December The videos and activities were edited, rendered, and embedded within a learning management system hosted by the Gift of Life Institute. The skills-based component provides instruction on the communication skills needed to effectively engage participants during platicas about organ donation.
To be effective communicators, promotoras must acquire the skills needed to discuss organ donation and promote donor deation and be motivated to use the skills [ 7172 ]. The platicas depicted in the module are intended to model these skills and build communication self-efficacy or confidence in starting the discussion about donation, addressing concerns raised by attendees, and promoting the act of donor deation using persuasive but noncoercive language. In addition, the program trains promotoras to exercise communicative tasks such as broaching the topic of organ donation, providing basic information, highlighting the benefits of donation to society, emphasizing the need for Latinx donors, promoting and addressing concerns about donor deation, providing instruction on how to register as an organ donor, answering questions, and closing the discussion.
The didactic component provides basic information about organ donation and transplantation and the need for donors in the Latinx community. Focus group participants reported myths Mature women San Bonifacio misinformation about organ donation, medical mistrust, and family aversion of discussing sensitive topics as some of the major barriers to organ donation and donor deation. Participants also acknowledged the need for transplantable organs and increased education about the topic within Latinx communities.
The didactic component featured several topics during the dramatized platicas. Platica attendees Mature women San Bonifacio about stories they heard about the black market, beliefs about health care providers doing less to save the lives of deated organ donors, worries about the incompatibility of organ donation and religious beliefs, the impact of being undocumented immigrants on the ability to receive a transplant, and how to handle discussions about organ donation with family members.
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 Mature women San Bonifacio were realistic, culturally targeted, and linguistically congruent [ 46 ].
Our collaborators helped to refine the dialog and educational material by providing insight on focus group data reflecting cultural beliefs and myths about donation. Promotora actors represented different Latin American countries and accents to model realistic donation discussions that reflect the variety of Latinx nationalities represented in the United States. A certificate of completion is provided upon module conclusion. The original version of the module was timed at 1 hour, 14 min, and 29 seconds.
The module underwent beta-testing from September 17,to October 12, Beta-testing involved full 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 promotoras organizations, 6 promotorasand 1 partnering organization administrator.
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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 Multimedia Appendix 2 for the beta-test questionnaire.
Perceptions of the module were assessed through 13 5-point Likert questions 1— strongly disagree ; 5— strongly agree ascertaining organization, length, realism, and interest in the material covered. Cultural competency was assessed through 5 4-point Likert-type questions 1— strongly disagree ; 4— strongly agree adapted from the Cultural Sensitivity Assessment Tool [ 74 ].