Objectives: The knowledge of brain death is fundamental for being able to understand the organ donation process and for ensuring its acceptance or rejection. Here, we analyzed the level of knowledge of the concept of brain death among Latin-American individuals who are residents of Spain to determine the factors affecting this knowledge.

Materials and Methods: Our patient group was a sample of 1314 Latin-American residents of Spain, obtained randomly and stratified according to the respondent’s nationality, age, and sex. Their attitude was assessed using a validated questionnaire. The survey was self-administered and completed anonymously.

Results: The questionnaire completion rate was 94% (n = 1237). Of total respondents, 25% (n = 313) knew the concept of brain death, which they considered to be an individual’s death, 56% (n = 697) did not know the term, and 19% (n = 227) believed that it did not mean death. The variables related to knowledge of the brain death concept included (1) country of origin, with a better knowledge among those with Mexican nationality (P < .001); (2) male sex (30% vs 23%; P = .003); (3) having university-level education (35% vs 23%; P = .044); (4) having discussed the matter within the family (29% vs 23%; P = .044); (5) having a partner with a favorable attitude toward donation (39% vs 21%; P = .001); and (6) the respondent’s religion (47% vs 7%; P < .001). The following factors persisted in the multivariate analysis: country of origin (odds ratio of 2.972), sex (odds ratio of 1.416), education level (odds ratio of 2.228), attitude of the respondent’s partner (odds ratio of 1.835), and religion (odds ratio of 4.490).

Conclusions: Knowledge of the concept of brain death is limited among Latin-American residents of Spain, with marked differences among country of origin and other socio-personal factors.

Key words : Hispanic population, Immigration, Level of education, Opinion survey, Questionnaire, Religion

Introduction

Of all the diagnoses that can be made in medicine, that of death will be made for all individuals. Currently, the complete and irreversible failure of the functioning of the central nervous system is the definition of brain death.^1-3 This is a concept that is recognized by the scientific community and by law in most countries.⁴ The definition and acceptance of this concept are key events in the donation and transplant process, given that most organ donors are people who have died and are in a state of brain death.^5,6 The introduction of the concept of brain death in national legal systems has revolutionized health care and has been decisive for establishing transplant programs. However, a lack of knowledge of this concept is one of the main psychosocial factors described in those who are against donation.⁷

Currently, immigration is a common and growing situation in western Europe, given this area’s great economic development. Growing immigration is having repercussions in the world of transplantation, given that in most western European countries there is a growing number of patients from other nationalities on transplant wait lists and organ procurement is being considered from nonnative families.^8-10

In Spain, this notable increase in the foreign population has led to a new social and demographic reality. The Latin American population has important cultural, religious, and linguistic similarities to Spain, making it easier for people from these countries to integrate into Spanish society. Despite the distance and what is involved for these Latin American families, who are generally poor, immigration from Latin America continues. This has converted the South East of Spain into a cosmopolitan area where the Hispanic population is increasing in size and is perfectly integrated into the social structure.¹¹

The objective of this study was to analyze the knowledge of the brain death concept among Latin American individuals who are residents of Spain and to determine the factors affecting their knowledge.

Materials and Methods

The study was approved by our ethics committee.

Study population
Our study group included individuals ≥ 15 years old residing in Spain and born in any Latin American country. To find population groups with these characteristics, we used the latest census of inhabitants as a population reference, in which a record exists of those who came to Spain legally and were born in Latin American countries. In addition, a percentage of this population resides illegally in Spain. Different immigration charities were consulted to estimate the size of this latter group (Table 1).

Sample size
Our sample size for this population (1 403 193 in total), and considering an attitude in favor of having 50% response, was 1314 people, allowing a confidence level of 95%, an accuracy of 3%, and a loss ratio of 19%.

Sample selection
A random representative sample was obtained and stratified according to the respondent’s nationality. The sample was obtained depending on the respondent’s legal situation. For the population with legal documentation, we used the population census of Spain to provide the number of people of every nationality living in Spain, which shows age, sex, and municipality of residence (http://www.ine.es/ inebase/cgi/axi). The sample was stratified by age and sex for each nationality (Table 1). For the population without legal documentation, information was not as accurate as that for the previous group, since there is no official information. Different immigration charities were consulted to estimate the size of this group. Given the characteristics of this group, a confidential informative document was drafted by the charities and given to us. With this information, an approximate population census was conducted with information on age, sex, and municipality of residence. The sample was stratified by age and sex for each nationality (Table 1).

Opinion survey and study variables
Attitude was assessed using a validated questionnaire of attitude toward Organ Donation and Transplantation9-12 (PCID-DTO Rios: A Questionnaire by the International Collaborative Donor Project About Organ Donation and Transplantation [Proyecto Colaborativo Internacional Donante-Donación y Trasplante de Organos], developed by Dr. Ríos). This questionnaire included 26 items distributed in 4 subscales. Validation in a Spanish population resulted in a total explained variance of 63.203% and a Cronbach alpha coefficient of 0.834. Each factor presented an internal consistency, measured by Cronbach alpha coefficients, of 0.957, 0.804, 0.745, and 0.641 and an explained variance of 26.287%, 24.972%, 6.834%, and 5.110%. In addition, an ad hoc questionnaire was administered that included other variables (Figure 1).

Assessment of the level of knowledge of the brain death concept and the factors affecting it was carried out using this questionnaire. Regarding the knowledge of the brain death concept, the following were considered: (1) the respondent accepted brain death as patient death (correct concept); (2) the respondent did not accept brain death as patient death (wrong concept); and (3) the respondent stated that she/he does not know the brain death concept (lack of knowledge about the concept).

The remaining variables were grouped as follows. (1) demographic variables, including country of birth; (2) socio-personal variables, including age, sex, and marital status; (3) variables of interaction in terms of donation and transplant, including having discussed the subject of organ donation and transplantation within the family and the attitude of one’s partner toward organ donation and transplantation; (5) variables of a religious nature, including the respondent’s religion (Catholic, atheist, or another religion); and (6) attitude toward organ donation and transplantation.

Application of the survey
The questionnaire was self-administered and completed anonymously. The whole process was supervised by collaborators from the International Donor Collaborative Project, who had been previously trained in this matter.

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, which could be completed on any other day and time. Confrontation, forcefulness, and aggression were avoided during the questionnaire completion process.

In each of the population nuclei where the sampling was to be carried out, support from immigrant associations was necessary. The personal information about the participants was obtained in the population nuclei by the International Donor Collaborative Project in collaboration with the immigrant associations. In each case, information was confirmed that the potential respondent met the criteria of stratification by nationality, age, and sex. Respondents were informed that this was a totally anonymous opinion study where their names and addresses would not be recorded. The potential respondents gave oral consent for the study. Members of the different associations were available to reduce any mistrust that the research team may cause among the Latin American population. In cases where respondents indicated that they do not know how to read, project collaborators read the questions and respondents marked the options that they considered appropriate. In no cases were participation incentives offered to the respondents.

The study protocol was approved by the institute's committee (Proyecto Colaborativo Internacional Donante). The informed consent was oral; for those under 18 years old, consent was given by the legal guardians.

Statistical analyses
The data were stored in a database and analyzed using SPSS statistical software (SPSS: An IBM Company, version 15.0, IBM Corporation, Armonk, NY, USA). A descriptive statistical analysis was carried out on each of the variables; for the bivariate analysis, t test and chi-square test were complemented by an analysis of remainders. Fisher exact test was applied when the contingency tables had cells with an expected frequency of < 5. To determine and assess multiple risks, we conducted a logistic regression analysis on the variables that were statistically significant in the bivariate analysis. P values < .05 were considered to be statistically significant.

Results

Questionnaire completion rate
The questionnaire completion rate was 94%. Of the 1314 estimated people surveyed in the study, 1237 validly completed the questionnaire.

Knowledge of the concept of brain death
Of the 1237 Latin Americans who completed the survey, 313 respondents (25%) had knowledge of the concept of brain death, which they considered as an individual’s death. We found that 697 respondents (56%) were not clear and had doubts about the concept, and 227 respondents (19%) believed that brain death does not mean an individual’s death (Table 2).

Demographic variables
To compare countries, given their diversity and the small numbers of respondents for each (shown in Table 2), only countries that had at least 20 respondents were selected, allowing for useful statistical results. Significant differences were found in attitudes according to respondent’s country of origin (P < .001; Table 3). We found that 33% of respondents from Mexico, 32% of respondents from Cuba, 29% of respondents from Argentina, 28% of respondents from Peru, 27% of respondents from Bolivia, 26% of respondents from the Dominican Republic, 22% of respondents from Ecuador, and 16% of respondents from Colombia had knowledge of brain death.

Socio-personal variables
Regarding the socio-personal-type variables, we found significant associations in terms of sex and level of education. From our study group, male respondents had a greater knowledge of brain death than female respondents (30% vs 23%; P = .003). Regarding level of education, respondents with a university education had a greater knowledge of the concept of brain death than those who did not (35% vs 23%; P = .044; Table 3).

Variables of interaction related to donation and transplantation
The exchange of ideas and opinions regarding donation and transplantation, both among family members and with one’s partner, was positively associated with knowing the concept of brain death (Table 4). Consequently, those who had discussed this subject with members of their family were more likely to have knowledge of brain death than those who had not (29% vs 23%; P = .020). A similar positive relation was seen when the respondent knew the partner’s attitude regarding donation and transplantation (39% vs 21%; P = .001).

Religious variables
The religious respondents had a greater knowledge of the brain death concept than those who defined themselves as atheists-agnostics (47% vs 7%; P < .001) (Table 4).

Multivariate analysis
The independent variables related to the knowledge of brain death persisted in the multivariate analysis (Table 5). Regarding country of origin, those from Cuba were 2.97 times (odds ratio [OR] = 2.972; P = .002), those from Mexico were 2.85 times (OR = 2.852; the Dominican Republic = .001), and those from Bolivia were 2.37 times (OR = 2.367; P = .002) more likely to know and accept the knowledge of brain death as a person’s death than those who came from Colombia.

In the multivariate analysis, male respondents were 1.41 times more likely than female respondents to know and accept the brain death concept as the death of a person (OR = 1.416; P = .019). Respondents with university-level education were 2.22 times more likely than those with primary-level education to know and accept the brain death concept as an individual’s death (OR = 2.228; P < .001).

Regarding partner’s attitude toward donation and transplantation, respondents who had a partner and knew that their partner had a favorable attitude toward organ donation and transplantation were 1.83 times more likely to know and accept the brain death concept as an individual’s death versus those who did not know their partner’s attitude (OR = 1.835; P < .001).

In the multivariate analysis, non-Catholic religious respondents were 4.49 times more likely than the atheists-agnostics to know and accept the brain death concept as a person’s death (OR = 4.490; P < .001).

Relation between attitude toward organ donation and transplantation and the knowledge of brain death
Among the respondents, 60% (745 individuals) were in favor of deceased organ donation, 12% (145 individuals) were against, and 28% (347 individuals) were undecided. No statistically significant relation was found between attitude toward organ trans-plantation and donation and the knowledge of brain death (Table 6).

Discussion

Latin America encompasses a large region whose main characteristic is its heterogeneity in terms of ethnicity, development, resources, culture, and population. It includes Brazil, with a mega population, as well as Caribbean islands. The level of economic development varies from agrarian economies to regions that are highly industrialized. Ethnically, the population is mainly made up of a mixture of inhabitants descending from Spanish and Portuguese settlers and different genetic groups that inhabited the regions before these settlers. All of the countries have at least one transplant program, and the number of new programs is rapidly increasing. It should be noted that the transplant operation is only one part of the process; afterward, follow-up is required together with relatively expensive immuno-suppressive medications that can be unaffordable in some cases.13 Currently, Latin America has donation rates that are below 10 deceased donors per million of population, except for some areas such as Uruguay. This is due to 2 fundamental reasons: the high rate of family refusals and the failure to detect cases of brain death.¹³

Classically, one of the main arguments against organ donation is the fear of apparent death and the fear of being declared dead with the only aim of organ retrieval. There is a clear relation between this fear and the discovery of brain death.^14-18 Studies of the Spanish population have shown that the lack of understanding of the brain death concept and the fear of apparent death in the donation process was at one point as high as 70% to 80%.¹⁹ Although these data have improved, presently, nearly 50% of the Spanish population do not know this concept, and its misconception continues to be an independent factor affecting attitude toward deceased organ donation.⁷ In Latin America, few studies have provided data about the concept of brain death and its relation with organ donation and trans-plantation.20 The few that have been published have analyzed attitudes toward donation but not the subject of brain death. In these studies, attitudes in favor of donation range between 50% and 80%.²¹ The present trend of Latin American governments is to promote organ donation and transplantation. Consequently, there is a close relationship with the Spanish National Transplant Organization in an attempt to introduce the Spanish model of organ donation for transplantation as far as possible in most of these countries.¹³

The data from our study show that the knowledge and acceptance of brain death is low in the Latin American population residing in Spain, at rates worse than levels in the native Spanish population.⁷ The population data reported by our group, using the same questionnaire, show that 51.4% of the native Spanish population know and accept the brain death concept compared with the 25% of Latin Americans reported here. It should also be taken into account that the population under analysis is heterogeneous, and there are important differences according to nationalities.^22,23

The Latin American population residing in Spain is relatively young. This could mean that attitudes and knowledge on the concept of brain death in their countries of origin are probably lower because usually older people are even less aware of these matters. In addition, immigrants who come to Spain are a select group of Latin Americans due to the high cost of the journey, and it can be seen that nearly 19% stated that they have a university-level education. All of this led us to believe that the knowledge of brain death could be lower in their countries of origin and among the Latin populations in nearby countries such as the United States.^24-26

Most studies that have examined this matter of brain death knowledge have shown a close association between the knowledge and acceptance of the concept of brain death and attitude toward organ donation and transplantation.^7,9,17,18,27 However, in this study, this association was not found. It is possible that the lack of awareness about this matter, in which only 25% of those surveyed accepted that it means a person’s death, can account for these data. Generally, and based on this association, it has been suggested that reinforcing the knowledge and acceptance of the brain death concept could contribute to improving attitudes toward organ donation and transplantation. However, in this particular case, it is not so clear, although any campaign in this regard will reinforce the knowledge of the concept of brain death and improve attitudes toward organ donation and transplantation.^28,29

We should also refer to the different structural differences occurring in organ donation and transplantation in the countries analyzed. For example, in Spain, where there is a high level of specialization in the donation process, these differences in the knowledge of brain death do not have a direct effect on donation rates. However, in countries with a lower level of specialization in this area, this lack of knowledge could be the reason why there is an important barrier to being able to find donors and request donations.

In addition to nationality, the most important factors detected in this population with Latin American origin are mainly related to level of education, family, and religion. Within the family, it has been seen that discussing this matter in family circles increases the chances of being in favor of organ donation and transplantation. In this context, the attitude of one’s partner is crucial, to such an extent that, when the respondent knows his or her partner is in favor of donation, he or she has a more favorable attitude toward this matter. Therefore, it would seem to be beneficial to promote dialogue about matters of transplantation and donation with family circles and with one’s partner.^9,30,31 However, this most basic mechanism of information and decision-making could come up against ancestral taboos that could prevent or make it difficult to have conversations about death. In most of the Latin American populations, the subject of death is not usually discussed because of the belief that it will bring bad luck. That is, although there could be potentially many donors, these are lost because families did not know the attitudes of potential donors while they were alive. In this regard, Guadagnoli and associates³² stated that 50% of those who wish to donate do not communicate their decision to their families.

Finally, we should indicate that the rate of knowledge of brain death in the religious population (those who practice religion to some extent) is high, and this could be an avenue to promote donation. When these respondents know that their “church” is in favor of donation, their attitude is more favorable. Therefore, given that most religions are currently in favor of organ donation, we should make religious authorities aware of the importance of informing their followers about the importance of organ donation and not being opposed to this activity.⁷

To conclude, we should note that knowledge of the brain death concept among Latin American residents in Spain is limited, and there are marked differences between the respondent’s attitudes, which are affected by the respondent’s country of origin and other socio-personal factors. Although no close association exists between the knowledge of the concept of brain death and attitude toward organ donation in this population group residing in Spain, by reinforcing a positive attitude toward brain death, we could make it easier to facilitate the donation and transplant process.

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