Objectives: The knowledge of the concept of brain death is fundamental for being able to understand the organ donation process and helps to achieve its acceptance. Our aim was to analyze levels of understanding of the brain death concept among Latin Americans residing in Florida (USA) and to determine the factors affecting this understanding.
Materials and Methods: A sample of residents of Latin American origin in the state of Florida was randomized and stratified by nationality, age, and sex (N = 1524). Attitude was assessed using a validated questionnaire, which was self-administered and completed anonymously. For statistical analysis of descriptive data, we used t test, the chi-square test, and logistic regression analysis.
Results: The questionnaire completion rate was 95% (n = 1450). We found that 24% (n = 350) understood the concept of brain death, 54% (n = 777) did not understand it, and the remaining 22% (n = 323) believed it did not mean a person’s death. The following variables were related to understanding this concept: (1) country of origin (P < .001), (2) sex (P = .001), (3) marital status (P < .001), (4) level of formal education (P < .001), (5) having spoken about the subject with one’s family (P < .001), (6) a partner’s attitude toward donation (P < .001), and (6) religion (P < .001). In the multivariate analysis, the following factors continued to be related: country of origin, level of formal education, and religion. A more positive attitude toward organ donation was found among those who understood the concept of brain death (29% vs 22%; P = .004).
Conclusions: Knowledge of the concept of brain death among Latin American residents in Florida is limited, with marked differences depending on the respondent’s country of origin, level of formal education, and religion.
Key words : Level of formal education, Immigration, Organ donation, Population, Religion, Survey
The brain death (BD) concept is currently recognized in most countries both by the scientific community and by policy makers, specifically meaning the death of a person.1,2 The definition and acceptance of this concept have become key events in the development of donation and transplant processes, given that most organ donors are people who have died in a state of BD.3 In this sense, the introduction of the BD concept into law in several countries has revolutionized the system and has been decisive for establishing transplant programs.
Despite its establishment, many have not assimilated this concept, and it is commonly associated with reversible states of coma. Therefore, some people have not accepted that it means a person’s death.4-6
The lack of knowledge regarding this concept has become one of the main psychosocial factors reported for being against organ donation.7 Indeed, this lack of understanding of the BD concept and the fear of apparent death have been shown to affect as much as 70% to 80% of the population.5-7 Lack of knowledge on BD is not just isolated to the general population but also includes a considerable percentage of professionals from health care centers.8-11
In recent decades, immigration has become more common in Western societies given their comparatively higher level of economic development.
This fact is having a repercussion on the world of transplantation because most Western countries are experiencing a substantial increase in non-national patients on transplant wait lists and requesting of organs from non-native families is being considered.3,12
This notable increase in the foreign population is leading to a new social and demographic reality in the United States. The Latin American population is one of the most important immigrant groups in their society, given the geographical proximity and attractiveness of the US society for the Latino population. This has transformed Miami, Florida, above all in the southern United States, into a cosmopolitan area where the Hispanic population is becoming ever bigger. Previous available data about the Latino population have shown that their knowledge of the BD concept is low.13
The objective of our study was to analyze the understanding of the BD concept among Latin American residents in Florida (USA) and to determine the factors affecting this understanding.
Materials and Methods
Our study population included Latin Americans ≥ 15 years old residing in the state of Florida in the United States. To find individuals with these characteristics, the latest census from 2010 of inhabitants in Florida was taken as a population reference. The 2010 census included a record of the percentage of legal residents born in Latin American countries currently residing in Florida. In this census, the Latin American population living permanently and legally in Miami account for 3 970 375 people (http://www.census.gov/). In addition, to obtain an estimation of the number of individuals without legal resident status, we consulted several immigration charities that anonymously informed us that there were approximately 1 363 798 more citizens without documentation who could be living in the state of Florida.
The sample size for this population (n = 5 334 173), with the assumption that 50% of respondents had a favorable attitude, was 1524 people, with a confidence level of 95% and an accuracy of 3%, considering a loss ratio of 30%.
A random representative sample was obtained, stratified according to the respondent’s nationality, sex, and age. The sample was obtained according to the legal situation of this population. For those with legal documentation, we used the 2010 census, which provided the number of people of every nationality living in Florida, giving age, sex, and municipality of residence (http://www.census.gov/). The sample was stratified by age and sex for each nationality according to census data (Table 1). For those without legal documentation, information about this population was not as accurate, since there is no official information. Different immigration charities were consulted to estimate the size of this group. Given the characteristics of this population, a confidentiality of information form was drafted and signed by the charities. With this information, an approximate population census was estimated with information on age, sex, and municipality of residence. The sample was stratified by age and sex for each nationality according to the approximate data (Table 1).
Opinion survey and study variables
The instrument of measurement was a validated questionnaire about attitude toward organ donation and transplantation, specifically the Proyecto Colaborativo Internacional Donante sobre donación y trasplante de órganos desarrollado por el Dr. Ríos (PCID-DTO RIOS).5-7,13,14 This questionnaire included questions that were distributed into 4 subscales or validated factors in the Spanish population, presenting a total explained variance of 63.203% and a Cronbach alpha confidence coefficient of 0.834.
A pilot study was carried out using a random sample to confirm and validate the questionnaire in this subset of the population (n = 200). The pilot study encountered no problems.
Assessments of the understanding of the concept of BD and the factors affecting it were undertaken through the use of this questionnaire. The questionnaire was completed anonymously and was self-administered.
Regarding knowledge of the concept of BD, the following were considered: (1) correct concept (respondent accepts BD as the patient’s death), (2) wrong concept (respondent does not accept BD as the patient’s death), and (3) lack of knowledge of the concept (respondent states that he or she does not know the concept of BD).
Other variables were grouped as follows: (1) demographic variables (country of birth), (2) socio-personal variables (age, sex, marital status), (3) variables of interaction related to donation and transplant (including having spoken about the subject of organ donation and transplant within the family and attitude of one’s partner toward donation and transplant), (4) variables of a religious nature (respondent’s religion [Catholic, atheist, another religion]), and (5) attitude toward organ donation and transplantation.
Application of the survey
The questionnaire was self-completed anonymously. The whole process was supervised by collaborators from the “International Collaborative Donor Project,” who had been previously trained in the matter and carried out the study.
The training of the collaborators was based on acquiring basic skills for empathizing with the respondent, focused mainly on conveying the idea that it was a totally anonymous project with the objective of making improvements in health. Facilities were provided for completing the questionnaire, allowing that questionnaires could be completed on any day and time. Care was taken to avoid any confrontation, forcefulness, or aggression during the questionnaire completion process with the potential respondent.
In each of the population nuclei where the sampling was to be carried out, the support of the immigrant associations was necessary. Personal information of participants was obtained in the population nuclei by the collaborators from the International Donor Collaborative Project in collaboration with the immigrant associations. Each potential respondent was confirmed to meet enrollment criteria and stratified by nationality, age, and sex. Potential respondents were assured that this was a totally anonymous opinion study where their name and address would not be recorded. Each potential respondent gave their oral consent for the study. Members of the different associations were available to reduce any mistrust that the research team might have caused among the study population. In cases where respondents indicated that they did not know how to read, project collaborators read the questions. No incentives were offered to respondents for project participation. The study protocol was approved by our collaborative review committee (Proyecto Colaborativo Internacional Donante). Informed consent was oral, and consent for those under 18 years old was given by their legal guardians.
Data were stored on a database and analyzed using the SPSS version 21.0 statistical package (IBM Software Group, Chicago, IL, USA). We conducted a descriptive statistical analysis; for comparison of the different variables, we used t tests and chi-square tests, which were complemented by an analysis of the remainders. To determine and assess multiple risks, we conducted a logistic regression analysis using the variables that were statistically significant in the bivariate analysis. In all cases, values of P < .05 were considered to be statistically significant.
Questionnaire completion rate
The questionnaire completion rate was 95% (1450 respondents of 1524 selected) (Table 2).
Knowledge of the brain death concept
We found that 24% (n = 350) of the Latin American residents in Florida who were surveyed understood the concept of BD, meaning that they considered BD to mean an individual’s death. However, 54% (n = 777) were not clear about this concept and had doubts about it, whereas the remaining 22% (n = 323) believed that it did not mean a person’s death.
Bivariate analysis of the factors affecting the brain death concept
To compare countries, given their diversity and the small number of respondents in each of them (Table 2), we selected those countries that had at least 20 respondents so that results were statistically useful. Significant differences were found according to the respondent’s country of origin (P < .001; Table 3).
Of the respondents, the BD concept was known by 35% of Mexicans and Puerto Ricans, 27% of Dominicans, 23% of Venezuelans, 19% of Cubans, 14% of Colombians, 9% of Guatemalans and Peruvians, 6% of Hondurans, and 1% of Nicaraguans (Table 3).
With regard to socio-personal-type variables, significant associations were found in terms of sex, marital status, and level of formal education (Table 3). Regarding respondent’s sex, female responders had a greater understanding of BD than male responders (28% vs 21%; P = .001). Regarding marital status, we observed that those who no longer had a partner (separated, divorced, or widowed) knew the correct concept of BD better than single people (33% vs 17%; P < .001). Finally, with regard to formal education, university students had a notable understanding of BD compared with those who had a primary education (46% vs 17%; P < .001) (Table 3).
Variables of interaction related to donation and transplantation
The exchange of ideas and opinions about donation and transplantation, both with family members and with the respondent’s partner, was positively associated with knowing the correct concept of BD (Table 3). For instance, a greater percentage of those who had spoken with their family about the matter knew the concept versus those who had not discussed the matter (41% vs 23%; P < .001). In addition, more respondents who did not have a partner or who had a partner with an attitude in favor of organ donation understood the concept of BD better than respondents who had a partner with an attitude against donation and transplantation (33% and 38% vs 0%; P < .001) (Table 3).
Respondents who professed religious beliefs other than Catholicism were those who had the greatest knowledge of the BD concept in contrast to those who defined themselves as atheists-agnostics (41% vs 8%; P < .001) (Table 3).
Multivariate analysis of the factors affecting understanding of the brain death
In our multivariate analysis, we found that the independent variables listed below were associated with knowledge of the BD concept (Table 4).
Country of origin
In our study cohort, those from Mexico (odds ratio [OR] = 30.355; P = .001), Puerto Rico (OR = 27.519; P = .001), the Dominican Republic (OR = 21.386; P = .004), Cuba (OR = 16.344; P = .006), Venezuela (OR = 11.805; P = .026), and Colombia (OR = 8.130; P = .049) had a greater understanding of the BD concept than Latin Americans from other countries.
Level of formal education
Having a university education was significantly related to knowledge of the BD concept versus not having higher-level education (OR = 3.434; P < .001).
Respondents who indicated having any kind of religious belief, both non-Catholic (OR = 4.490) and Catholic (OR = 3.962), understood the correct concept of BD to a higher degree than those who indicated that they were atheists or agnostics (P < .001).
Associations between attitude toward organ donation and transplantation and
knowledge of the brain death concept
Among the respondents, 33% (n = 485) were in favor of deceased organ donation, 40% (n = 575) were against, and 27% (n = 390) were undecided. A significant difference was found between attitude toward donation and transplantation and a correct understanding of BD. Thus, among those who had an attitude in favor of organ donation and transplantation, there was a better understanding of the BD concept than among those who were not in favor (29% vs 22%; P = .004) (Table 5).
Latin Americans residing in the United States comprise a large proportion of the
population and are well-established in American society. However, this
population remains not as well-integrated as the native population. That is, in
the world of organ transplantation, despite inclusion of Latin Americans on
transplant wait lists, they account for few organ donors, both living and
deceased.15,16 In addition, in 2014, Hispanic patients on kidney transplant wait
lists received a lower rate of living-donor kidney transplants than patients of
white non-Hispanic ethnicity.17 Currently in the United States, although
Hispanics need proportionately more kidney transplants, they receive
proportionately lower numbers of kidney transplants from living
donors versus other ethnic or racial groups.18 However, it is not clear which
factors are leading to this situation; furthermore, although there is a
lack of knowledge among Latin Americans
about the concept of BD, organ donation, and transplantation, little is known
about how to improve this situation.17
To encourage deceased organ donation, it should be remembered that one of the classic reasons for being against donation is the fear of an apparent death and the fear of being declared dead with the only purpose of organ recovery; indeed, there is a clear relationship between this fear and the lack of understanding of the BD concept.5,19,20
Spanish population studies have shown that 70% to 80% of those in Latin American countries lack understanding of the BD concept and have fears of apparent death in the organ donation process.20 Although these data have been improving, in comparison, only 50% in Western societies do not understand this concept; these ideas continue to be independent factors affecting attitude toward deceased organ donation.7 The BD concept and its relationship with organ donation and transplantation have not been well studied in Latin American populations,10 and investigations have mainly analyzed attitudes toward donation but do not enter into the matter of BD. As reported in one of these studies, attitudes in favor of donation range between 50% and 80%.21 The current tendency of governments in Latin America is to encourage organ donation and transplantation. As a result, there is close cooperation with the Spanish National Transplant Organization (the “ONT”) with the aim of introducing the Spanish model into most of these countries as far as it is possible.12
Data from our study showed that knowledge and acceptance of the BD concept are low among Latin Americans residing in the United States. Only 24% of respondents accepted it as meaning a person’s death. In other studies that used the same questionnaire as the one used here, it has been possible to determine knowledge of the BD concept in the Latin American immigrant populations in Spain,13,22 which showed similar results. For example, 24% of the Latin Americans surveyed who were residing in Florida understood the concept, whereas 25% of Latin Americans who were residing in Spain understood it. Of note, both of these levels are below those of native populations. That is, in Spain (using the same questionnaire), 51% of native Spanish individuals understood the BD concept.7 Finally, we should state that the population under investigation is heterogeneous, and important differences have been reported depending on the respondent’s nationality.23,24 For example, we found that individuals from Mexico and Puerto Rico had a much greater understanding of the BD concept, at a rate of 35%, although still below the rate reported in Western societies.7
An important aspect in these types of studies is the use of questionnaires that are expressly designed and validated for being able to quantify, universalize, and standardize information, which is not used in most studies on this matter. Therefore, it is difficult to compare the results of some studies with the results of others, and on most occasions they are incomparable. Our use of the “PCID-DTO Rios” questionnaire, which has been used in several psychosocial studies, allowed us to make reliable comparisons. Therefore, as mentioned, knowledge and acceptance of the BD concept as a person’s death were shown to be similar among Latin American residents in Florida and in Spain.13,22 However, the different attitudes toward organ donation between both groups is interesting. For example, Latin American residents in Florida are in favor of donation in 33% of cases compared with 60% in favor among residents in Spain. It is clear that the fear of apparent death is the main reason for not being in favor of donation. We should seek to identify factors that affect these differences, taking into account that both studies are stratified and are representative of the study populations.
Most studies carried out on this issue have suggested a close relationship between knowledge and acceptance of the BD concept and attitude toward organ donation and transplantation.5,7,25-27 Thus, in the present study, those who understood the BD concept were in favor of organ donation in 40% of cases compared with 31% among those who did not understand it. Generally speaking and as a result of this association, it has been suggested that strengthening the knowledge and acceptance of BD could contribute to improving attitudes toward organ donation and transplantation.28,29
A mention should also be made of the different organ donation and transplant structures in these countries. In Spain, for example, where there is a high level of specialization in the donation process, differences in knowledge of BD might not have a direct impact on donation rates. However, in countries with a lower level of specialization in this task, this lack of knowledge could be a considerable barrier for preventing detection of donors and requests for donation.
In addition to nationality, the most important factors detected in our population of Latin American individuals were mainly related to level of formal education and religion. Discussing the subject in family circles also seemed to increase a favorable view. In this context, the attitude of the respondent’s partner was fundamental: when the partner was in favor and the respondent was aware of the partner’s attitude, then the respondent also had a clearly favorable attitude regarding this issue. Therefore, it would seem beneficial to encourage dialogue about topics related to donation and transplantation within family circles and with one’s partner.5,11,30 However, the basic mechanism of providing information for making decisions conflicts with ancestral taboos that prevent or hinder conversations about death. this regard, most Latin American individuals do not usually speak about the subject of death because they believe it brings bad luck. Therefore, many potential donors are perhaps lost because their families were not aware of the attitude of the deceased person while they were alive. Guadagnoli and associates31 stated that 50% of those who wish to donate do not communicate this decision to their families.
Finally, it should be stated that the percentage of our study population with religious beliefs and who were practicing their religion to some degree was high, and this should be considered as a way to promote donation. That is, if a respondent knew that their “church” was in favor of donation, their attitude could be more favorable. In cases where religions are mostly in favor, it would be beneficial to make religious authorities aware of the significance of informing their followers about the importance of organ donation and encourage them not to oppose this procedure.7,32
To conclude, we should note that knowledge of the BD concept among Latin Americans residing in Florida is limited, with marked differences in terms of country of origin and other socio-personal factors. Given that there is a close association between knowledge of BD and attitude toward organ donation in this population group residing in the United States, donation and transplant processes could be strengthened by encouraging a positive attitude and better understanding of the concept of BD.
Volume : 17
Issue : 2
Pages : 147 - 154
DOI : 10.6002/ect.2017.0254
From the 1International Collaborative Donor Project (“Proyecto Colaborativo
Internacional Donante”), Murcia, Spain; the 2Department of Surgery, Pediatrics,
Obstetrics, and Gynecology, University of Murcia, Murcia, Spain; the 3Transplant
Unit, Surgery Service, IMIB-Virgen de la Arrixaca University Hospital, Murcia,
Spain; the 4Regional Transplant Center, Consejería de Sanidad y Consumo de la
Región de Murcia, Murcia, Spain; the 5Department of Psychology, Universidad
Católica San Antonio, Murcia, Spain; the 6Organización Nacional de Trasplantes,
Madrid, Spain; the 7Hospital Regional de Alta Especialidad del Bajío, León,
Guanajuato, Mexico; the 8HGSZ No. 10 del Instituto Mexicano del Seguro Social
Delegación, Guanajuato, Mexico; the 9Transplant Coordination Center, UMAE
Hospital de Especialidades, Monterrey, Mexico; and the 10Endocrinology and
Nutrition Service, Hospital Clínico Universitario Virgen de la Arrixaca, El
Palmar, Servicio Murciano de Salud, Murcia, Spain
Acknowledgements: The authors have no sources of funding for this study and have no conflicts of interest to declare. This study would not have been possible without the collaboration and support of the liver transplant unit of the Jackson Memorial Hospital and Jackson Health System of Miami, which made it possible for this research to be carried out during Dr. Ríos’ stay. We also thank The Leonard M. Miller School of Medicine at the University of Miami (Miami, Florida, USA), which made the study possible during Dr. Ríos’ stay as an associate in the postdoctoral research program of the Liver/GI Transplant Program. Finally, we thank the 101 immigration charities that collaborated in carrying out and developing this project. We are also grateful to Mr. Francisco J. Mora, Sr (Hialeah, FL, USA) who played a key role in making the necessary contacts for undertaking this project.
Corresponding author: Antonio Ríos, Avenida de la Libertad No. 208, Casillas, 30007 Murcia, Spain
Phone: +34 968 27 07 57
Table 1. Distribution of the Estimated Latin American Population in Florida (Both Legal and Illegal Residents) and Distribution of Estimated Sample and Sample Obtained at End of Study
Table 2. Distribution of Respondents According to Nationality, Age, and Sex
Table 3. Bivariate Analyses of Factors Related to Knowledge of Brain Death Concept Among Latin Americans Residing in Florida
Table 4. Multivariate Analyses of Factors Related to Knowledge of Brain Death Among Latin Americans Residing in Florida
Table 5. Relationship Between Attitude Toward Organ Donation and Transplantation and Knowledge of the Concept of Brain Death