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Background: Despite positive public attitudes toward solid organ donation in the United States, some of the lowest rates of donor designation persist among older adults and Latinx populations. Aims: To identify barriers and facilitators to organ donation and donor designation among lay health educators ("promotoras") and mature Latina (50+ years). Methods: An explanatory sequential mixed-method design was employed, with telephone surveys followed by focus group interviews, to assess and understand the nuances of organ donation and donor designation knowledge, attitudes, and practices among promotoras and mature Latinas in Chicago (IL), Philadelphia (PA), and San Antonio (TX). Descriptive statistics summarized quantitative survey data; thematic content analysis was performed on qualitative data. Results: Twenty-nine promotoras and 45 mature Latina participated in both the surveys and focus groups (N = 74). Most participants (90%) had limited knowledge of organ donation but reported being "somewhat" or "strongly" in favor of donation (70%); 40.5% were registered donors. Participants lacked knowledge about the registration process and its legal standing and upheld concerns that registered donors would be vulnerable to organ traffickers or targets for murder. Themes emerging from the group interviews revealed additional barriers to designation including distrust of the medical establishment, perceptions of inequities in organ allocation, and family resistance to discussing death. Discussion: Low donor designation rates are primarily driven by concerns about organ trafficking and the fairness of the allocation system, particularly for undocumented immigrants. Conclusions: The results informed development of a culturally targeted educational and communication skills intervention to increase donor designation in Latinx communities.

BackgroundAs 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. ObjectiveThis 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. MethodsIn partnership with 4 promotoras organizations, the culturally targeted Promotoras de Donación eLearning module was developed based on input from 12 focus groups conducted with Latina women (n=61) and promotoras (n=37). 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 designed, filmed, and developed in a visually appealing module interface. The module was beta-tested with promotoras before launch. ResultsPromotoras de Donación, available in Spanish with English subtitling, lasts just over an hour. 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. Pre- and posttests assessed the module’s direct effects on promotoras’ organ donation knowledge and attitudes as well as confidence promoting the act of donor registration. ConclusionsThis 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. Trial RegistrationClinicalTrials.gov NCT04007419; https://www.clinicaltrials.gov/ct2/show/NCT04007419

Background As cultural contexts have gained increasing relevance in medical decision-making, the current mainstream definition of autonomy is insufficient. A viable alternative framework, relational autonomy posits that agents' actions are influenced by and embedded in society and culture rather than occurring in isolation. To test the concept's applicability, we examine whether Asian Americans in the study's sample operationalize relational autonomy as a decisional approach in hypothetical scenarios about organ donation, a practice for which there is considerably lower enthusiasm compared to other racial groups in the US. Methods A national sample of Asian American adults were recruited from Qualtrics research panel. Participants completed a Think-Aloud interview containing scenarios in which they decide whether or not to: 1) become a registered donor at the motor vehicle department; 2) authorize organ donation for a close relative who unexpectedly died. The interview first elicited candid reactions to the scenarios, followed by probing participants' rationale of their initial responses. Participants' final decision to each scenario (whether or not to register; whether or not consent to surrogate authorization), as well as participants' decisional approaches (individualistic vs relational) were coded using the constant comparison method. Results The sample (n = 40) mirrored the largest proportions of Asian Americans in the US; the plurality identified as Chinese (35%), Filipino (27.5%) and Indian (25%). In response to the organ donor registration prompt, a majority of respondents (57.5%) expressed they would employ the mainstream decisional approach of individualistic autonomy, and 42.5% would make the decision with a relational approach. In contrast, when responding to the surrogate authorization prompt, the majority (77.5%) described a relational approach when making the decision, to preserve familial harmony and honor their cultural heritage. Conclusions Use of individualistic and relational autonomy frameworks are situational for some individuals. Participants acknowledged the impact of personal, cultural, and societal elements on their decisional approach. The concept of relational autonomy has utility through its versatility in complex decision-making events and by accounting for multiple stakeholders without privileging the autonomy of a single decision-maker over others. Clinical trial number: not applicable.