Comparison of Hemodialysis Patients and Healthy Individuals' Attitudes towards Organ Donation: A Descriptive Study

Background:This study aimed to compare the attitudes of hemodialysis patients who are candidates for organ transplantation and healthy individuals towards organ donation.

Methods:The research is comparative descriptive type. The sample of the study consisted of a total of 167 people, including 82 hemodialysis patients and 85 healthy individuals who applied to the Family Health Center. The data of the study were obtained using the questionnaire and organ donation attitude scale. SPSS 25 was used in the analysis of the data.

Result:The mean scores of humanity and moral conviction, which show a positive attitude, were found to be 113.3 (8.1) and 110.9 (12.0), respectively, in hemodialysis and healthy individuals. Fears of medical neglect with negative attitude was 28.3 (10.4) in the hemodialysis group; is 26.1 (10.8) in healthy individuals. The mean fears of bodily mutilation, the other negative attitude subscale, is 33.0 (12.3) and 28.2 (13.0), respectively, in hemodialysis and healthy individuals. It was found that there was only a significant difference between the groups in fear of bodily mutilation score (p< 0.05). When these data obtained from the study are compared with the literature, it is seen that the results are similar.

Conclusion:It was determined that the positive attitude subcale of both those who received hemodialysis treatment and healthy individuals was high, and the negative attitude subscale was low. It is recommended to conduct informative studies aimed at individuals who have a negative attitude towards organ donation.

Clinical Relevance:It is necessary to further increase the positive attitude of healthy individuals and hemodialysis patients about organ donation

Keywords: Family Health Center; Hemodialysis; Organ donation; Transplantation

Currently, hemodialysis, peritoneal dialysis and renal transplantation are among the treatment options for end-stage renal disease [1]. Transplantation, one of these options, is widely used all over the world as a treatment option for end-stage organ failure [2]. Lack of effective treatment opportunities for diseases that result in failure, other than organ transplantation, increases the importance of organ donation [3]. However, organ restriction is still a global problem for transplantation all over the world. Organ transplants performed worldwide can meet only 10% of the existing need. In Turkey, organ donation is made with informed consent, the individual informs that he/she donates his/her organs in his/her health and is registered in the organ donation system and is given a donation card [4,5]. According to the Organ and Tissue Donation System data in Turkey, the number of volunteer donors is 493.000. While the number of brain death notifications was 16.000 between 2019 and 2020 , the number of families that allowed organ donation was only 4.700 [6]. According to these data, it is seen that only 25% of brain deaths are approved for organ donation. In addition, the number of patients waiting for transplantation is 31.764 in 2019 and the number of centers where organ donation can be made is 8846. The total number of transplants in the United States in 2018 was 36.528 [7]. These results show that although Turkey have advanced transplant centers worldwide; It is behind the developed countries in terms of the number of deceased donors and the number of organ transplants from deceased donors [8]. Lack of deceased donors donation is a problem that is discussed in many countries of the world and solutions are sought. This problem is even more important in our country and it is the most important obstacle in front of transplantation. Because 80% of the organ donors in European countries are deceased donors and 20% are living donors. On the contrary, 75% of organ donors in Turkey live, deceased donors is 25%. deceased donors organ donation per million in developed countries of 20-30, 33.6 in Spain, Belgium, 25.2, 14.1 in Canada, 16.2 in France, Greece 4.5, Turkey is 2.2 [3,9]. This data show that enough organ donation was not made in Turkey. In addition, it is not clear which groups have a negative attitude towards organ donation. For this reason, this study was conducted to compare the attitudes of hemodialysis patients who are candidates for organ transplantation and healthy groups, who have an important place in organ donation, towards organ donation.

The research was planned descriptively in order to compare the attitudes of hemodialysis patients and healthy individuals who applied to a Family Health Center (FHC) towards organ transplantation.

The research was conducted in the hemodialysis unit of a state hospital and in a family health center in Turkey between May 2020 - September 2020. Hemodialysis unit and health center were located in the same city center.

The population of the study consisted of patients who were treated in a hemodialysis unit of a state hospital and healthy individuals who applied to a Family Health Center. The sample of the study was calculated by power analysis in accordance with the literature [10]. As a result of the calculation, the number of people to be included in the study was determined as 154 with 0.457 effect size, 95% reliability, 5% margin of error and 80% power. 167 people were included in the study by increasing the power of the study and taking into account the possible losses. Persons over the age of 18 who received hemodialysis treatment and volunteered for the study were included in the hemodialysis group. Volunteers with no health problems registered with the family health center were included in the healthy individuals (eg: Persons who bring their child for vaccination or apply to a family health center for their relative). Healthy individuals who applied to the family health center during working hours were sampled according to the order of arrival.

In the family health center, 155 people were reached, but five people were excluded from the study because they had chronic diseases and 65 people did not want to participate in the study, and a total of 85 people constituted the sample of the study. All of the patients who received hemodialysis treatment were included in the sample. However, out of a total of 102 patients; 82 hemodialysis patients were included in the study because eight had communication problems and 12 refused to participate in the study. As a result; The study was completed with a total of 167 people, including 85 healthy individuals and 82 patients receiving hemodialysis treatment.

The data of the study were collected through face-to-face interviews with volunteers older than 18 years of age and without any speech problems. It took approximately 30 minutes to complete the questionnaire and the organ donation attitude scale used for data collection.

The data were collected using a questionnaire prepared by the researchers in line with the literature [10-12] and the organ donation attitude scale.

Questionnaire:It consists of eight questions that question the socio-demographic (age, gender, marital status, educational status, profession, etc.) characteristics of the individuals.

Organ Donation Attitude Scale (ODAS):The Turkish validity and reliability study of the scale, which was developed by Parisi and Katz in 1986, was carried out by Yazıcı Sayın (2015). The scale consists of likert format with six options, between totally agree and totally disagree [13]. There are 40 items and two sub-dimensions in the scale. The first dimension consists of positive statements and consists of 20 items that show people's " humanity and moral conviction (HMC)" about organ donation (1, 3, 6, 7, 9, 10, 12, 15, 18, 20, 22, 23, 25, 27, 28, 31, 34, 36, 38, 40). The second dimension consists of two negative statements: fear of medical neglect (FMN) and fear of bodily mutilation (FBM). Fear of medical neglect and bodily mutilation consist of 10 items each. Score calculation is made by adding the points of each item. The points that can be obtained from “humanity and moral conviction” can be between 20-120, 10-60 points from the perceived fear of “medical neglect” variable, and 10-60 points from the perceived fear of “bodily mutilation”. Total negative attitude score is between 20-120. High positive and low negative scores indicate that "voluntary attitude is strong" about organ donation. In the Turkish validity and reliability study, the Cronbach's alpha value of the scale was 0.93 for positive attitude items, 0.87 and 0.88 for negative attitude items. In this study, Cronbach's alpha values were determined as 0.85 for positive attitude, 0.75 and 0.83 for negative attitude items.

In the analysis of the socio-demographic data obtained; number, percentage, mean and standard deviation are used. The mean and standard deviation were used in the analysis of the scale scores, the student t test for the comparison of the scale scores of the groups, and the chi-square test for the analysis of the categorical variables. p < 0.05 was considered as significant.

The research was conducted in accordance with the Declaration of Helsinki. Prior to collecting the data, permission was obtained from clinical research ethics committee and other institutions. In addition, necessary permissions were obtained to use the organ donation attitude scale. Written consent was obtained from the patients after they were informed about the protection of privacy and confidentiality and that they could leave the study whenever they wanted.

This study is applicable only to Turkey and lacks generalizability outside of Turkey.

It was determined that the average age of the hemodialysis group was 55.96 (17.02), the healthy people were 34 (11.82), 40.2% of the hemodialysis patients were in the age group of 50-64, and 60.0% of the healthy individuals were in the 18-34 age group (Table1).

When the mean scores of the organ donation attitude scale were examined; It was determined that the mean score of humanity and moral conviction showing positive attitude was 113.3 (8.1) and 110.9 (12.0), respectively, in patients who received hemodialysis treatment and healthy individuals. The mean score of the negative attitude, fear of medical neglect, was 28.3 (10.4) in the hemodialysis group; it was determined to be 26.1 (10.8) in healthy individuals. The mean score of fear of bodily mutilation, the other negative attitude sub-dimension, was found to be 33.0 (12.3) and 28.2 (13.0), respectively, in hemodialysis and healthy individuals.

There was no significant difference between the groups between the mean scores of humanity and moral conviction (HMN) and fear of medical neglect (FMN) sub-dimensions (p> 0.05). A significant difference was found between the groups in the fear of bodily mutilation (FBM) sub-dimension (p< 0.05) (Figure 1).

It was determined that the majority of the participants in both groups (Hemodialysis 95.1%, Healthy individuals 72.9%) answered "yes" to the question “If it were necessary for your survival, would you accept someone else's organ implantation in your body?”. In addition, similar to question “Would you accept an organ of the opposite sex if it was necessary for your survival?”, it was found that the majority of each group (Hemodialysis 85.4%, Healthy individuals 75.3%) answered "yes". However, it was determined that 68.3% of the hemodialysis group answered "No" to the question “Would you accept an animal's organ if it was necessary for your survival?”, and 50.6% of the healthy individuals answered "Yes". It was determined that 69.5% and 75.3% of the hemodialysis group and healthy individuals, respectively, said "yes" to the question “Would you accept an artificial organ like a machine if it was necessary for your survival?”. In addition, it was found that the majority of the participants in both groups (Hemodialysis 87.8%, Healthy individuals 84.7%) answered "no" to the question “Do you have an organ that you do not intend to donate?”.

When the requests of individuals in both groups to donate organs were examined; It is observed that 46.3% of the hemodialysis group and 31.8% of healthy individuals want to donate organs. In addition, when their willingness to donate organs is questioned in a future period; 45.1% of the hemodialysis group and 47.1% of the healthy individuals gave the answer "yes". In addition, it was determined that the majority of those who answered no (66.6% of those who received hemodialysis treatment; 56.3% of healthy individuals) refused organ donation due to religious reasons. However, when both groups were examined, it was seen that the majority of the participants (73.2% of those who received hemodialysis treatment; 69.4% of healthy individuals) found organ donation "appropriate" in terms of religion.

Only 3.7% of the hemodialysis group and only 5.9% of healthy individuals reported that they had previously signed an organ donation card. 85.4% of hemodialysis patients in Turkey did not know that organ donation registration system, while 95.1% stated that he/ she did not know how to work the organ donation registration system in Turkey. In healthy individuals, these rates were found to be 51.8% and 74.1%, respectively. In addition, it was found that 72.0% of the hemodialysis group and 75.3% of healthy individuals had not received information about organ donation before (Table 2).

When the mean scores of the scale are compared according to the marital status of the groups; It was found that there was only a significant difference in the FBM score of married people (p < 0.05), men in the hemodialysis group had higher scores than healthy individuals, and this difference was statistically significant in HMN and FMN sub-dimension (p< 0.05). It was determined that there was no significant relationship between the age ranges and income status of the groups and the mean scale score, and the mean FBM score was significant in the illiterate (p< 0.05). It was seen that those who said “yes” and “no” to question “Are you considering donating organs?” did not make a significant difference in any dimension. However, when compared with the undecided, it was observed that only the mean FBM sub-dimension score created a significant difference between the groups (p< 0.05). When the sub-dimension mean scores of those who said "yes" to the question “Do you find organ donation right religiously?” were compared, it was found that there was no significant difference between the groups in any sub-dimension (p> 0.05), but there was a significant difference in the FMN and FBM sub-dimensions of those who answered "no" (p< 0.05) (Table 3).

This study was conducted to compare hemodialysis patients and healthy individuals' attitudes towards organ donation. In the study, it was found that the HMN score, which is the positive attitude sub-dimension of both groups, was high in both hemodialysis and healthy individuals (113.3 ± 8.1 in hemodialysis treatment; 110.9 (12.0) in healthy individuals), and the negative attitude subdimensions score FMN and FBM were low (FMN and FBM, respectively; 28.3 (10.4), 33.0 (12.3) in hemodialysis treatment; 26.1 (10.8), 28.2 (13.0) in healthy individuals). In addition, negative attitude subscales were found to be lower than positive attitude subscales. When the mean scores of the groups were compared, it was found that there was a significant difference only in the FBM negative sub-dimension (p < 0.05), and there was a significant difference in the FBM scores of women and illiterates (p < 0.05). In Aslan's (2019) study, it was stated that there was no significant difference in the total scale score between the groups in terms of gender and education level (p> 0.05), and there was a significant difference in the total score between low and middle income levels [14]. It is thought that this result is due to the fact that most of the participants in the research are university graduates. In a study conducted with adult individuals, HMC, FMN and FBM scores were found to be 96.85 (20.5); 27.29 (11.23); 28.35 (11.93) respectively [15]. When compared with the current study, it is seen that the positive attitude score is low and the negative attitude score is high. It was thought that the reason for this result was the socio-cultural difference between the regions where the studies were conducted. When the data of healthy individuals in a study conducted in a family health center and healthy individuals in this study were compared, it was observed that there were similar results in negative attitude sub-dimensions, but the score in the positive attitude sub-dimension was lower [10]. In a study conducted with nursing students, HMC, FMN and FBM scores were reported to be 105.84 (12.61), 22.58 (9.25) and 23.32 (8.66), respectively [16]. Similarly, in another study conducted with nursing students, these scores were found to be at a similar level. In addition, in the study, it was stated that women's organ donation attitude was higher, and this difference was significant in FMN and FBM sub-dimensions (p < 0.05) [5]. It is seen in these studies and the current study that the positive attitude score is quite high. It is thought that the education given to the students about organ donation in nursing education contributes to this situation. In a study conducted by Nuran and Güler (2020) with nursing students, HMC, FMN and FBM scores were 95.13 (18.81); 29.30 (10.74); 30.00 (10.68) respectively [17], and in another study conducted with adult individuals, scores similar to these scores were found [18]. When the results of other studies conducted with the same scale in the literature are examined, it is seen that the negative sub-dimensions FMN and FBM results are similar, and the positive attitude HMC score is high. In this study, similar to the literature, it was found that both groups had high positive attitude scores and low negative attitude scores. Accordingly, it can be said that the group receiving hemodialysis treatment and healthy individuals have a positive attitude towards organ donation.

Considering the studies examining the attitude towards organ donation; It was determined that the students had a significant lack of knowledge about organ transplantation and donation and that very few of the students who want to donate organ donated organs [11]. In the study of Marc et al. (2017), it was determined that 84% of the participants did not have enough knowledge about organ donation [19]. In a study conducted with female students, it was reported that although the participants were willing to donate organs, the rate of organ donors was very low [20]. In a study conducted with adult individuals in a city center, it was found that the participants did not have enough knowledge about organ donation and experienced various concerns about this issue [21]. Similarly, in a study conducted with university staff, it was stated that the participants did not have sufficient knowledge about organ donation and they avoided organ donation [22]. In this study, similar to the literature data, it was found that both healthy individuals and the majority of those who received hemodialysis treatment did not have sufficient information about organ donation. It is thought that the reason for this situation is that they had not received information about organ donation before.

In this study, it was determined that 46.3% of the hemodialysis group and 31.8% of healthy individuals wanted to donate organs. However, only 3.7% of the hemodialysis group; Only 5.9% of healthy individuals stated that they had previously signed an organ donation card. In the study conducted by Güler et al. (2020), it was found that only 0.7% of the participants donated organs and 30.5% thought to donate organs [17]. In another study, it was found that 79.4% of the participants wanted to donate organs, but only 5.6% of them donated organs [23]. Similarly, in the study of Fontana et al. (2017), although 95% of the participants had a positive attitude about organ donation, it was determined that the rate of organ donation was insufficient [24]. In another study, it was found that 47.8% of the participants wanted to donate organs, but only 4.2% of them donated organs [11]. In the study of Koçak et al. (2010), it was reported that 56.1% of the participants wanted to donate organs, but the rate of people who donated organs was 1.8% [8]. When the literature data and the results of this study were compared, it was seen that individuals in both groups wanted organ donation but avoided attempting to donate. The data of these studies conducted in different populations show that a positive attitude towards organ donation does not affect the rate of donation sufficiently.

Individuals are thought to be against organ donation due to their religious misconception. On the other hand, it is believed that opposition to organ donation for religious reasons decreases as time passes [25]. In a study conducted with religious officials, it was stated that 88.2% of the people stated that organ donation is suitable for religions, but only 1.4% of them donated organs [3]. Similarly, in the studies of Güden et al. (2013) and Tarhan et al. (2015), it was found that the majority of religious officials reported that organ donation was appropriate in terms of religion (respectively %90.8 and %92.5) [26,27]. In another study, the rate of those who think that organ donation is suitable for religion was found to be 83% [28]. In Aslan's (2019) study, it was determined that 54.2% of the participants stated that organ donation was suitable for religion, while 16.2% stated that it was not appropriate. In addition, it has been reported that participants who do not want to donate their organs cited "religious reasons (7.0%)" as the most common reason [14]. In another study, it was reported that 94.7% of the participants do not want to donate organs, and 22.9% of those who do not want to donate do not want to donate because of their religious beliefs [21]. In the study of Uzuntarla (2016) examining the change in organ donation attitude before and after training, it was found that the rate of those who defended that organ donation was not harmful to religion increased from 24.8% before the training to 80.5% after the training [29]. In this study, it was seen that the majority of both hemodialysis treatment and healthy individuals found organ donation appropriate in terms of religion (Hemodialysis 73.2%; CH 69.4%). In addition, it was determined that there was no significant difference in the mean scores of those who considered religious organ donation appropriate (p> 0.05), but when the mean scores of those who did not find organ donation appropriate in terms of religion were compared, it was found that there was a significant difference in FMN and FBM scores (p < 0.05). In this study, in accordance with the literature, it is seen that the majority of both hemodialysis treatment and healthy individuals have a positive religious perspective on organ donation. However, it was determined that one of the most important reasons for those who think negatively is religious belief. It is thought that this is due to the fact that individuals are not sufficiently informed about religion.

It was determined that the positive attitude sub-dimension of both those who received hemodialysis treatment and healthy individuals was high, and the negative attitude sub-dimension was low. These results show that both groups have a positive attitude towards organ donation. However, organ donation rates were found to be very low in both groups (Hemodialysis, 3.7%; healthy individuals, 5.9%). It was found that individuals in both groups thought of organ donation in the future and the majority of those who were negative about organ donation did not want organ donation due to religious reasons. In addition, it was observed that the knowledge level of the people in both groups about organ donation was insufficient. In line with these results; It is recommended to provide sufficient information about organ donation in hemodialysis units and family health center, to plan initiatives to increase positive attitude, and to participate in awareness-raising activities that will prevent negative attitudes towards organ donation.

We would like to thank all the patients who agreed to participate in the study.

• Health Services General Directorate Department Of Tissue, Organ Transplant And Dialysis Services. https://shgmorgandb.saglik.gov.tr/

• Turkish Transplant Foundation. https://www.tonv.org.tr/tr/organ-bagisi/istatistikler/