Objectives: Despite the positive view about organ donation in our society, many people remain reluctant to donate. Identifying the perceived advantages and disadvantages and raising awareness about organ donation may help promote willingness for eligible people to become donors. Our aim was to determine the validity and reliability of the Organ Donation Decisional Balance Survey for the Turkish community in order to implement the transtheoretical model of behavior change and to emphasize the positive aspects of organ donation during the process of decision making.

Materials and Methods: A total of 420 adults, including 304 women and 116 men, voluntarily participated in the study. A personal information form, now known as the Organ Donation Decisional Balance Survey, and the Compassion of Others’ Lives scale were used to evaluate the participants. Confirmatory factor analysis was used to examine the factor structure of the questionnaire. All data were analyzed with confirmatory factor analysis using the Amos 16 programs.

Results: Analysis results showed that the fit index values of the survey were acceptable (P < .01). Factor loads of the survey for the advantages subdimension were between 0.53 and 0.78, and the factor loads for the disadvantages subdimension were from 0.46 to 0.75. Internal consistency of these 2 components resulted in an acceptable Cronbach alpha value. We also identified a positive correlation between the advantages score and the Compassion of Others’ Lives scale score.

Conclusions: This survey can guide those who prepare training programs on organ donation by highlighting positive thoughts and reducing negative judgments. The Turkish version of the Organ Donation Decisional Balance Survey is acceptable, valid, and reliable.

Key words : Awareness, Behavior change, Transtheoretical model

Introduction

The World Health Organization has defined the transfer (engraftment) of human cells, tissues, or organs from a donor to a recipient with the aim of restoring the function(s) in the body as “transplantation.”¹ Organ transplantation is a pre­ferred treatment for people with end-stage organ disease. Transplantation helps to increase the life and quality of people as well as their survival.² In Turkey in the early 1970s, experimental studies on liver transplant were initiated by Haberal and colleagues, and the first successful kidney transplant (from mother to son) was performed by Prof. Mehmet Haberal in November 1975.3 Furthermore, Haberal has worked to promote social responsibility for organ donation and has also lobbied for the creation of laws to promote donation and implement this concept in people’s minds.³ However, the struggle continues for social responsibility for organ donation, as in many countries of the world, just as in Turkey, the shortage of donor organs and tissues continues.

In developed countries, 80% of kidney transplants are procured from deceased donors; however, in Turkey, many kidney transplants come from living donors,⁴ and the vast majority of organ donations typically are procured from living family members (mothers, siblings, and fathers), which appears to indicate that some form of “compulsory volunteerism” drives the donor system. Studies suggest that some of the important obstacles standing in the way of deceased-donor transplants in Turkey are religious considerations, ignorance, lack of confidence in the health services, shortcomings in the legal system, sociocultural structure, and family relationships.⁵

Although many people in Turkey may express willingness to donate organs, the percentage of organ donation appears to be under 10%.^5-8

It is important to develop new strategies to facilitate an increase in organ donation.⁹ Transthe­oretical model constructs could be successfully adapted to understanding organ donation.⁹ Studies carried out within the framework of the trans­theoretical model^10,11 show the various stages of understanding among individuals, which facilitates successful evaluation of the stages of volunteering for organ donation. It is exceedingly difficult for those who are in the stages of contemplation to proceed with the act of formal donation, and an acceptance of a greater sense of social responsibility is needed before people may reach a decision to donate. For this reason, a goal should be to bring potential donors (people who are still considering the option) to the preparatory stage, after which they may further consider the option to donate.¹⁰

The family plays a decisive role not only in the individual’s own decision, but also in the process of donation because, even though the decision occurs while the individual is yet alive, the family must provide final permission after death. According to the Organ and Tissue Transplant Law (law no. 2238),¹² the written permission of the family is required after brain death before donation may proceed. It is known that families also play an active role in donations of organs from deceased family member(s). It has been reported that families who decided to donate organs were less depressed after the death of their relatives than those who did not donate organs.¹³

In addition, the idea to prevent another family from losing a loved one may provide comfort to the donor’s family during their grieving. On the other hand, it has been observed that individuals who have relatives, friends, or family members who need an organ transplant or have become a donor have more positive attitudes toward organ donation.¹³ Decisional balance provides a measure of an individual’s rating of the relative importance of the advantages versus the disadvantages of changing a specific behavior. Ultimately, identifying perceived advantages and disadvantages and raising awareness of organ donation can help people take action with regard to organ donation.¹⁴

To our knowledge, no questionnaire is available that objectively evaluates the perspectives of people during the decision-making process. Therefore, the aim of this study was to determine the validity and reliability of the Organ Donation Decisional Balance Survey for the Turkish population.

Materials and Methods

Cross-cultural adaptation process
The Turkish version of the Organ Donation Decisional Balance Survey was developed with the forward-backward translation method,^15-18 from English to Turkish, and was initiated after consent from the author of the original version was obtained. Approval was then obtained from Baskent University Institutional Review Board and Ethics Committee (KA20/116). There were 2 translations from English into Turkish, each independent of the other. Both translators were bilingual with Turkish as their first language, and both had a medical background. A synthesis of the original questionnaire and both initial Turkish translations was performed, resulting in version 1. In this phase, inappropriate wording choices were identified and resolved following discussion between the translators. Then, 2 additional translators, who were blinded to the original version of the Organ Donation Decisional Balance Survey, independently translated version 1 back into English. Their first language was English, and they both had a medical background. An expert committee (1 medical doctor, 1 psychologist, 2 physiotherapists, 1 language professional) compared the source and the final versions of the survey and verified the cross-cultural equality. Differences in translation were debated, with alternative wording suggested when it was necessary. The penultimate version of the Organ Donation Decisional Balance Survey was pilot tested on 10 participants. The participants completed the Organ Donation Decisional Balance Survey and were asked if they found any items difficult, upsetting, or confusing. Difficulties encountered by the participants were noted, and the translations were revised as needed. All items were easy to understand by all participants who filled out the survey.

Sample size justification
There are no absolute rules for the sample size needed to validate a questionnaire. Sample size estimation was performed in accordance with previous suggestions.^19-21

Participants
The study was performed in Ankara, Turkey, between February and April 2020. A total of 420 adults, composed of 304 women and 116 men, voluntarily participated in the study. Each individual participating in the study provided informed consent.

Inclusion criteria were as follows: the participants who were included were required to be over the age of 18 years old, under 65 years old, and literate. Individuals under the age of 18 and/or illiterate were not included in the study. In Turkey, law no. 2238 (Law on Organ and Tissue Reception, Storage, Vaccination and Transplantation) prohibits the donation of live organs from donors under 18 years of age. For this reason, the age range in our study excluded any participants who were under the age of 18 years.¹²

Instruments
A personal information form was created by the researchers, in which the demographic information of the participants such as age, male/female, marital status, and educational status were collected. The Organ Donation Decisional Balance Survey and the Compassion of Others’ Lives scale (the COOL scale) were used. Data were collected by internet survey of the participants.

Organ Donation Decisional Balance Survey
The Organ Donation Decisional Balance Survey consists of 14 items intended to measure the basic information about the individual’s personal valuation regarding the importance of the positive and negative aspects of the donor decision.^9,22

These 14 items were previously developed and validated by Hall and colleagues⁹ to assess decisional balance regarding deceased organ and tissue donation among African American college students. Survey items ask about 7 possible advantages and 7 possible disadvantages of organ donation. Responses were made on a 5-point scale, ranging from 1 for “not at all important” to 5 for “extremely important.”9 Summary variables of advantages score and disadvantages score were created by summing all responses for the 7 corresponding decisional balance survey items for each of the 2 constructs, with possible summary scores ranging from 7 to 35. Next, decisional balance scores were created by dividing participants’ summed advantages score by their summed disadvantages score, with possible ratio scores ranging from 0.2 to 5.0. Ratio scores higher than 1 indicate more positive decisional balance.^22,23

The Compassion of Others’ Lives scale
The Compassion of Others’ Lives scale (the COOL scale), developed by Chang and colleagues in 2014, consists of 26 items that are equally divided into 2 subscales: the empathy scale (items 1-13) and the alleviate suffering scale (items 14-26).25 The response format was in the form of a 7-point Likert scale (from 1 for strongly disagree to 7 for strongly agree). The points obtained from each subscale showed the respondent’s characteristics for that subscale. To calculate the score, the total point value obtained from a particular subscale was divided by the total number of items in the subscale. These average scores from each subscale were added together to determine the total COOL score. Chang and colleagues evaluated the results with the Cronbach alpha method and obtained alpha scores of 0.872 and 0.894.^24,25

Statistical analyses
Confirmatory factor analysis was used to examine the factor structure of the questionnaire formed by the scores obtained from the participants. All data were analyzed for confirmatory factor analysis using the Amos 16 programs from SPSS (IBM Corp.).

Fit indices based on confirmatory factor analysis were analyzed by chi-square, goodness of fit index, standardized root mean square residual, root mean square error approximation, and comparative fit index. Root mean square error approximation and standardized root mean square residual values indicate the following: less than 0.05 indicates perfect fit, 0 to 0.05 indicates good fit, and 0.05 to 0.10 indicates acceptable fit. Comparative fit index values in the range 0.97 to 1 indicate good fit, and values in the range from 0.95 to 0.97 indicate acceptable fit. Goodness of fit index values from 0.95 to 1 indicate good fit and 0.90 to 0.95 indicate acceptable fit.²⁶

Convergent validity was evaluated using the Pearson correlation coefficient. The Cronbach alpha value was calculated to determine the reliability level of the survey. Descriptive level of significance was set at P < .05.

Results

The sociodemographic characteristics of the indi­viduals are shown in Table 1. The original factor structure of Organ Donation Decisional Balance Survey developed by Hall and colleagues,⁹ consisting of 14 items and 2 subdimensions (advantages and disadvantages), was tested with discriminant func­tion analyses. First, fit index values were calculated for the model with 2 latent variables (factors) stated in the original survey. Results are shown in Table 2.

According to the findings on construct validity, the third item (0.01) in the advantages subdimension of the original questionnaire was removed from the model because of low factor load. In the subsequent analysis, it was observed that the fit index values and factor loads of the 13-item questionnaire were appropriate. When the 13-item model of the scale was examined, the goodness of fit index values were at good and acceptable levels; therefore, the 6-factor structure was supported as in the original scale. In accordance with confirmatory factor analyses, the factor loads of the survey are shown in Figure 1.

The analyses revealed that the factor load values were significant. When factor load values were analyzed for the advantages subdimension, values were between 0.53 and 0.78; factor loads ranged from 0.46 to 0.75 for the disadvantages subdimension. These values indicated that the factor loads of the items were at an acceptable level.

To determine the reliability of the questionnaire, Cronbach alpha internal consistency coefficients were calculated. Cronbach alpha internal consistency coefficients are presented in Table 3 for the 2 subdimensions obtained after factor analysis. The internal consistency coefficient value obtained for the subdimensions was 0.83 for advantages; for disadvantages, it was 0.82.

The correlation analysis results conducted to determine the convergent validity of the questionnaire revealed that there were significant positive rela­tionships between the empathy subscale, the alleviate suffering subscale, and total COOL scores and advantages subdimension and a significant negative relationship with the disadvantages subdimension. The relationships between decisional balance constructs (advantages and disadvantages) and the COOL are shown in Table 4.

Discussion

We conducted this study to determine the psycho­metric properties of the Turkish version of the Organ Donation Decisional Balance Survey and to identify the positive and negative consequences of consenting to organ donation, as developed by Hall and colleagues.⁹

The main purpose of factor analysis is to reduce or summarize to a lesser number of basic dimensions to facilitate understanding and interpretation of relationships among many variables that are thought to be related. The fit index values obtained for the 13-item Organ Donation Decisional Balance Survey after confirmatory factor analyses demonstrated an excellent model fit. Because the chi-square test is sensitive to sample width, it is generally significant in large samples.²⁷ The rates obtained in our study were 3.12 and 4.0, and lower rates have been shown to be acceptable.²⁸ In addition, we determined that the comparative fit index, the incremental fit index, and the Tucker-Lewis index, which are fit index values, were larger than 0.90 and the root mean square error approximation value was less than 0.08; these results also indicate that the model is acceptable.²⁹ In other words, the results of the confirmatory factor analyses conducted to test the construct validity of the survey showed that the 2-dimensional and 13-item fit indexes of the survey were acceptable. The fit index values obtained in this study were higher than the fit index values of the original survey.⁹ Similarly, the fit index values obtained in our study were parallel to the fit index values obtained from the study of Flemming and colleagues.²²

Although the original survey contained 14 items, our analysis revealed that the 13-item form of the survey was valid and reliable. Whether an item in the scale is included as a factor to be defined in the factor analysis depends on the high load value indicating its relationship with that factor. In the analysis, the third item (“There is a special need for organ donation in my race”) in the advantages subdi­mension was removed from the model because of low factor load. Therefore, the answers given to this question were considered to be inconsistent. In addition, the fact that item 3 has a low factor load reveals the necessity to reconsider the verbal structure of this item. In this case, when deciding on compliance, the ratio of chi-square value to degree of freedom is used. The factor loads obtained as a result of this study were similar to the factor loads obtained in other studies. For example, Flemming and colleagues22 found factor loads ranging from 0.59 to 0.76 for advantages and 0.39 to 0.75 for disadvantages. In another study, Hall and colleagues9 found factor loads ranging from 0.58 to 0.69 for advantages and 0.39 to 0.69 for disadvantages.

Our analysis on the reliability of the survey was assessed with the Cronbach alpha coefficient, which was determined to be 0.83 for advantages and 0.82 for disadvantages. These internal consistency coefficients obtained from our study were higher than those obtained by Hall and colleagues⁹ and Flemming and colleagues.²² The decisional balance constructs (advantages and disadvantages) and the COOL scores have a positive relationship between empathy and pain relief and advantages and a negative relationship with disadvantages. The fact that people who have high empathy skills and seek pain relief have a positive opinion about organ transplantation is the expected result for our study. The result of the study, which examined the relationship between organ donation attitudes and behaviors, showed that some personality variables such as altruism, empathy, openness, and conscience are related to organ donation attitudes and behaviors.^30-32 This supports the results in our study. Based on all this, we could argue that improving people’s attitudes and behaviors in this sense will have an impact on the donation decision. Although there is no unethical situation in organ donation, the specific beliefs of the societies, their prejudices, and unconscious behavior can negatively affect the organ donation decision-making process. Identifying the main source of these negative judgments in the community and highlighting the positive aspects can help turn contemplation of organ donation into action.

In addition, we speculate that the compulsory implementation of such short and valuable surveys (municipality, police, marriage office, etc), which is deemed to be a must for some part of the life of the society, will provide awareness. We believe that this questionnaire is beneficial for the organ transplant services by stakeholders and individuals to raise awareness about organ transplantation in the community. This survey can also guide those who prepare training programs on organ donation by highlighting positive thoughts and reducing negative judgments. In addition, short application time and fewer questions offer easy application. Cross-cultural differences can be evaluated in future studies.

Limitations
It is a limitation that only people who are literate and live in Ankara were included in the study.

Conclusions

This study shows that the Turkish version of the Organ Donation Decisional Balance Survey is acceptable, valid, and reliable for use in the Turkish population.

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