Donor Designation Among Mature Latinas and Lay Health Educators (Promotoras): A Mixed-Methods Study

Abstract

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. Trial registration ClinicalTrials.gov NCT04007419.

Direct and Indirect Effects of a Web-Based Educational and Communication Skills Intervention “Promotoras de Donación” to Increase Donor Designation in Latinx Communities: Evaluation Study

“…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.…”

“…Specifically, we hired an actor to portray a promotora leading a small group discussion or plática with mature Latinas. The module is in Spanish with English subtitles and was informed by focus groups with promotoras and mature Latinas [ 16 ]. The Gift of Life Institute (Philadelphia) assisted with curriculum and module design and development as well as learner management and web hosting.…”

“…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 ].…”

“…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.)…”

“We figured it out as we went along”: Staff perspectives of COVID‐19 response efforts at a large North American syringe services programme

“…Sixteen in‐depth semi‐structured interviews with a purposeful sample of PPP staff across departments were conducted by our team, which has significant qualitative research experience (Bass et al, 2011 , 2015 ; Gordon et al, 2021 ; Kang et al, 2021 ; Martin et al, 2021 ). Semi‐structured interviews guided conversation and allowed the flexibility to hone discussion towards staff members' roles, experiences and perceptions (Saks & Allsop, 2021 ).…”