Key words : Deceased, Family, Population, Psycho-social factors

Introduction

Since the end of the 20th century, Spain has changed from being a country with high rates of emigration (especially to Germany) to a country that is a destination for immigrants. This is a fact that has occurred simultaneously in the countries in the south of Europe, which have become destinations for migration flows for growing numbers of migrants from outside the European Union.¹

Diversity has been one of the main characteristics of foreign migration into Spain. Unlike other countries in the center and north of Europe, where migration has been traditionally common, the first foreign immigrant residents arriving in Spain came from developed countries. However, in the past 2 decades, this situation has changed; presently, the Spanish state is one of the main destinations for an ever greater number of foreign immigrants who arrive looking for a better future.² These immigrants are known as migrant workers, accounting for 80% of immigrants; the other 20% (nearly half of which are retired) come from countries that are richer than Spain, from northern Europe, who are searching for an improvement in their lifestyle and quality of life in a country near their own.^1-4 Currently, the 2 largest groups of immigrant populations in Spain are a Latin American population and a population from the African continent.^4-8

All of these migratory flows are having an effect on society and health care in the countries of destination. One aspect of health care that is being affected is organ transplantation, which is a sensitive field given its peculiarities. In this regard, although it is a fully accepted therapy, it is restricted by the shortage of organs available.^9,10 Therefore, in western European societies and especially in countries of southern Europe, the number of non-national patients on transplant wait lists is increasing considerably, and requests from non-native families are being made more regularly.^3,4,9,10 These new situations need to be handled carefully, with individuals coming from countries with low organ donation rates, where communication is generally difficult because of language barriers, and where social integration is not easy in most cases. In Spain, immigrants from Latin American countries have integrated well, and donation rates are similar to those of the native population.⁵

Nevertheless, the situation in the African population is different and has not been extensively studied.^11-19 So far, only 8 studies^12-19 have been published on the attitude toward organ donation among African populations in their countries. Three concerned the Republic of South Africa^12-14 and reported a favorable attitude, which was even higher than the rest of the Western world. However, the other 5 from the rest of Africa15-19 indicated unfavorable attitudes. Of note, these 8 articles are at high risk of bias; therefore, there are doubts about their reliability.^12-19 With regard to the African immigrant population, there is only 1 article, carried out in Spain,¹¹ which included 213 respondents and which reported that less than 50% of respondents were in favor. In addition, preliminary results of some nationalities among the immigrant African populations in Spain, derived from the project presented in this article, reported unfavorable attitudes^20-25 (Table 1).

The objectives of this study were to (1) find the structure of attitudes among the population born in Africa and living in Spain toward donation of their own solid organs after death and (2) analyze the psychosocial variables that determine these attitudes.

Materials and Methods

Study population
The population included individuals born in any of the 54 nations of the African continent, age ≥15 years, living in the territory of Spain. For population estimates, this population group was divided into 2 subgroups: residents with legal documentation and residents without this documentation.

Population with legal documentation
We used census data to obtain the size of the African population, according to country of birth, which provided information about age and sex. According to the Spanish National Institute of Statistics,26 the official number of people with legal documentation was 1 017 441 (Table 2).

Population without official documentation residing in Spain
The information about this population group is not registered officially; therefore, the data are not so precise as in the group with documentation. To obtain these data, we collaborated with 31 African associations, nongovernmental organizations, and immigrant charities. We used the received information to create a database of about 5 699 313 Africans residing in Spain with a nonlegal residency status (Table 2).

Sample size and stratification
The sample size of the total population (n = 6 716 754), with the assumption that 50% of respondents were in favor, was 4145 people, with a confidence level (1-α) of 99% and an accuracy (d) of 2%, considering a loss ratio (R) of 0%.

The sample was stratified by the respondent’s nationality of origin, age, and sex. For geographical stratification, we considered that the African continent is divided into 3 zones (Northern, Central, and Southern Africa) and by 2 parallel dividing lines, to the north and south of the Equator. The first line divides Northern and Central Africa going from Gunjur to Asab. The second line separates Central Africa from Southern Africa, and this imaginary line extends from Soyo until Zanzibar. For stratification by sex, we stratified according to whether the respondent was a male or female. For stratification by age, grouping was carried out according to the following age ranges: 15-25 years, 25-44 years, 45-64 years, and >65 years (Table 3).

Opinion survey
The measurement instrument used was a validated questionnaire of attitude toward organ donation and transplantation (PCID-DTO RIOS: A questionnaire from the “Proyecto Colaborativo Internacional Donante sobre donación y trasplante de órganos,” as it is called in Spanish, developed by Dr. Ríos).^27,28 This questionnaire is validated, having a total explained variance of 63.203% and using a Cronbach α reliability coefficient of 0.834. A pilot study (n = 100) was carried out using a random sample to confirm to the system that selecting the population to be surveyed was a viable one.

Study variables
Respondent attitudes toward the donation of their own organs after death were studied as a dependent variable. The independent variables were grouped into the following categories: (1) demographic variables, (2) socio-personal variables, (3) variables of knowledge related to donation and transplant, (4) social interaction variables, (5) religious variables, and (6) variables of attitude toward the body.

Application of the survey
The questionnaire was self-completed anonymously. The whole process was supervised by collaborators from the International Collaborative Donor Project. Training of the collaborators included acquisition of basic skills needed for empathizing with respondents and focused mainly on conveying the idea that the project was totally anonymous with the objective of making improvements in health. Facilities were provided for completing the questionnaire, which, if necessary, could be completed on any day or time and which stressed avoidance of any confrontation, forcefulness, or aggression during the questionnaire completion process with the potential respondent.

In each of the population clusters where the sampling was to be carried out, support from immigrant associations was necessary. Personal information on participants was obtained in the population clusters by collaborators from the International Collaborative Donor Project in conjunction with immigrant associations. For potential respondents, it was confirmed that each met the stratification criteria according to nationality, age, and sex. It was explained to the respondents that this was a totally anonymous opinion study where their name and address would not be recorded. Potential respondents gave their oral consent to participate in the study. Members of the different associations were available to reduce any mistrust that the research team might have caused among the African populations. In cases where respondents indicated that they did not know how to read, project collaborators read the questions and marked the options that they considered appropriate. In no cases were incentives offered to respondents for their participation.

The study protocol was approved by the institute's committee (CE012116), and verbal consent was requested for the study (in the case of individuals under 18 years, consent was given by legal guardians). Informed consent was given orally, with consent for those under 18 years given by their legal guardians.

Statistical analyses
Data were stored in a database. A descriptive statistical analysis was carried out; for comparison of the different variables, t tests and chi-square tests were applied. To determine and evaluate multiple risks, a logistic regression analysis was performed.

Results

Questionnaire completion and attitude toward deceased organ donation
Rate of questionnaire completion was 87% (3618 respondents of 4145 selected). Table 2 shows the distribution of respondents stratified by country of birth, age, and sex.

Attitude toward donation of one’s own solid organs was favorable in 31% of the respondents (n = 1112). Among remaining respondents, attitude was unfavorable in 40% (n = 1464) and undecided in 29% (n = 1042).

Demographic variables affecting attitude toward organ donation
We observed differences in attitude toward donation according to nationality and African geographical areas analyzed. In this sense, the nationalities most in favor of donation were the Cameroonians (71% in favor; n = 29), and those least in favor were from Gambia (17% in favor; n = 5) (P < .001). With regard to geographical area, attitude toward donation was least favorable in the Northern zone (P < .001) (Table 4).

Socio-personal variables affecting attitude toward organ donation
In terms of age, the respondents in favor of organ donation tended to be younger than those who were not in favor (31 vs 33 years; P < .001). Those respondents who had descendents had a more favorable attitude (32% vs 27%; P = .001). Finally, differences were found according to level of education. Results for this variable showed that 61% of those with a university education were in favor of deceased organ donation compared with 13% of those who did not have a formal education (P < .001) (Table 4).

Factors affecting attitude toward organ donation based on variables of knowledge
Respondents who had had previous experience with organ transplantation, through friends or family members, had a more favorable opinion that those who did not have this experience (45% vs 28%; P < .001). However, only 17% of respondents had had this experience (n = 617).

We observed that a respondent’s belief that he or she could need a transplant themselves in the future was related to attitude toward donation, with those who believed they could need one being in favor in 50% of cases compared with 21% of those who did not think they would need one (P < .001). Finally, we observed an association between knowledge of the concept of brain death and attitude toward organ donation (44% vs 22%; P < .001) (Table 5).

Social interaction variables affecting attitude toward organ donation
We found that respondents who were in favor of donating a dead family member’s organs tended to be more in favor of donating their own organs (57%) compared with those who were not (8%) and those who had doubts about this question (14%) (P < .001).

Regarding other social interaction variables, we found that those respondents who had previously discussed the subject of organ donation and transplantation with their families had a more favorable attitude (54% vs 21%; P < .001). Within the family, the attitude of one’s partner toward donation was also important. In this sense, when one’s partner was in favor, 63% of respondents were also in favor; however, when the partner was against this, the favorable rate dropped to 5% (P < .001) (Table 5).

Finally, those respondents who usually partici-pated in prosocial activities, such as voluntary work or social help, or would be willing to do so, had a more favorable attitude than those who did not or who had no intention of doing so (45% vs 9%; P < .001) (Table 5).

Religious variables affecting attitude toward organ donation
The most favorable attitude was found among Catholics followed by atheists/agnostics compared with Muslims who were least in favor (54% and 47% vs 25%, respectively; P < .001). It is notable that the vast majority, 78% of respondents (n = 2816), were Muslims.

Among those who actively followed their religion, knowing that their church is in favor of organ donation and transplant was associated with a more favorable attitude than when they did not know this (48% vs 31%; P < .001). On the other hand, among those who believed their religion was against transplant, only 6% were in favor of organ donation (Table 6).

Variables of attitude toward the body affecting attitude toward organ donation
We observed a close relationship between attitude toward manipulation of the body and attitude toward organ donation. Fear of mutilation after donation or doubts about what to do in this situation led to a worse attitude toward donation compared with those who did not report any fear due to possible mutilation (16% and 14% vs 64%; P < .001) (Table 6).

We also found that those who would accept cremation of the body after death were more in favor of donating their organs than those who would not (53% vs 27%; P < .001). Similarly, those who preferred options other than burial after death had a more favorable attitude (42% vs 29%; P < .001). Finally, attitude was more favorable among those who would accept an autopsy after death if one were necessary (46% vs 28%; P < .001), as shown in Table 6.

Multivariate analysis of factors affecting attitude toward donation
Table 7 lists factors from the bivariate analysis that persisted in the multivariate analysis as independent variables affecting attitude toward donation of one’s own organs. These included (1) age, (2) having descendents, (3) level of education, (4) respondent’s belief that he or she could need a transplant in the future, (5) knowledge of the brain death concept, (6) respondent’s partner’s attitude toward donation of a family member’s organs, (7) having spoken about donation and transplantation within the family, (8) respondent’s partner’s opinion about organ donation, (9) respondent’s religion, (10) knowledge of the view of one’s religion toward organ donation and transplant, and (10) fear of mutilation of the body after donation.

Discussion

Currently, most countries in Africa have low donation rates, several of which have no active organ donor transplant programs. This lack of donation activity accounts for the fact that, in African countries of origin, there have only been a small number of studies investigating attitudes toward organ donation. Furthermore, the existing studies have tended to concentrate on countries such as South Africa,^12-14 which is different from other African countries, given that it was the first country to carry out a heart transplant. In these studies, attitude toward donation was reported to be favorable, with nearly 70% of South Africans prepared to donate their organs.¹⁴ Even so, South Africans account for a very low percentage of the total population in Africa; in addition, they are a population group with a low emigration rate.

In recent years, publications from Nigeria have increased, which have focused mainly on workers in health centers.^29-32 These studies involved small populations and provided contradictory results. For instance, in the Nigerian population, Odusanya and colleagues,¹⁵ in a sample of 428 citizens in Lagos, reported that 29.7% were in favor of organ donation after death. On the other hand, Iliyasu and colleagues,¹⁶ in a sample of 383 citizens in Kano, found that 79.1% would be prepared to donate an organ. There are too many differences between the results of both studies to be able to put it down to chance. We observed that the study from Iliyasu and colleagues¹⁶ had a sample selection that included participants who were sympathetic to the issue of transplantation, with 36 respondents (10.4%) knowing somebody who had donated an organ and 42 respondents (12.2%) knowing a transplant recipient. These percentages are very high for a population in which few transplant procedures are carried out. Finally, it should be taken into account that the 2 studies used different research methodologies and different attitude assessment questionnaires.^15,16 Therefore, these findings support some research groups, such as ours,²⁷ that recommend the need for psychosocial attitude studies using comparable questionnaires and, above all, that take samples that are representative of the study population. If these steps are not done, then the publications will only generate confusion and contradictory results.

In studies from countries in Northern Africa, where most African residents in Spain come from, we made several observations. A study from Egypt¹⁹ found that 32.7% of respondents were in favor of donating their organs after death, and another study in Tunisia¹⁸ found 53.9% of respondents were in favor. Two studies in Morocco, which focused on health care workers³³ and students,³⁴ provided interesting results, but these were not comparable with our present study as they had different objectives. More recently, El Hangouche and colleagues,¹⁷ in their report on a Moroccan population (n = 2000), showed that 51.2% of respondents were in favor of donation. These results were better than those obtained in our immigrant African population study but considerably worse compared results from western populations.35

With regard to attitude of African immigrants in Europe toward organ donation, López and colleagues¹¹ have already suggested a low level of awareness among this population group living in Spain. However, the study only included 164 respondents from the area of Northern Africa and 49 from Sub-Saharan Africa, showing that only 41.4% of the North Africans and 48.9% of the Sub-Saharans surveyed were in favor of donating their organs. Our data, with a sample stratified by the respondent’s nationality, age, and sex, confirmed this tendency, with only 31% of respondents in favor of donating their organs. These data are very negative compared with any other immigration group analyzed in Spain. For example, in the Latin American population, in a study carried out using the same questionnaire in which the population was also stratified by nationality, age, and sex, 60% of the respondents had a favorable attitude toward donation.⁵

This situation should serve as an indication to transplant coordinators that this population group needs to be prioritized when it is time to organize promotion campaigns, and the family interview should be adapted to the new and real social circumstances of these groups (there are language and cultural barriers, among others, that require the collaboration of a social worker to facilitate effective communication and good relationships between the coordination team and the family). In this regard, there are already findings reporting rates of nearly 45% of family refusals to donate in the African population.¹⁰

In a general analysis of immigration groups in Spain, carried out using the same questionnaire as the one used in the present study, it was notable that populations from Europe had a favorable attitude toward organ donation, which included those of British³ and German origin.⁴ Among groups from less developed countries, the Latin American population also had a favorable attitude,⁵ whereas the African population had a completely different profile, with a very unfavorable attitude. Given that they are an emerging immigrant group in Europe, the African population should be considered as a priority in transplant promotion strategies, with considerations needed in the approach used in donation interviews. These are important factors if we wish to prevent negative repercussions on donation rates in the coming years, as some studies have suggested could happen.¹⁰ What is more, we are faced with other emerging groups of immigrants, such as those from China, which also require analyses, given their cultural and social differences from European society and the low donation rates in their countries of origin.⁹

Psychosocial profiles of respondents showed that most factors described in western population studies occurred in the African population living in Spain. Factors such as previous experiences with donation and/or transplantation (that is, knowing a neighbor, friend, or family member who has had a transplant) and participation (or being willing to participate) in prosocial activities both tended to be related with a favorable attitude toward donation.³⁵ The first analyses of some population groups of Africans living in Spain, carried out by our group, already showed this trend.^20-25

As shown in Table 7, among the most important factors detected in this African population regarding attitude toward organ donation, we observed level of education, society and family setting, religion, and attitude toward manipulation of the body. All of these factors have been reported in studies of attitude carried out in western societies.^3-5,35 Consequently, classical techniques for promoting donation by encouraging family discussion about the matter and coordination with religious authorities so that they remind their followers that their religion supports organ donation are effective ways of fostering organ donation in this population group. We should remember that there are language and cultural barriers, often making it difficult to approach this population group. Thus, any effective campaign should be adapted to the language and culture intended to be reached.

Conclusions

The attitude of Africans living in Spain toward organ donation is very negative and is determined by a range of psycho-social factors that have been considered in this study.

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