The demographic information is summarised in Table 3. All participants were either currently living in Dubai or have lived in the Dubai. Both gender were recruited, where females made up 58.8% of the population, while males made up the rest (41.2%). Participants from nine nationalities, different age groups, educational level, religious beliefs and marietal status were included. This variability in demographics ensured getting a wide range of perspectives about the phenomenon under investigation.
6.2 Themes
A total number of four themes emerged from the dataset to answer the research questions as delineated below, and these were mapped to the levels of SEM as seen in Fig. 2:
1) Fear and body integrity
2) Family, relational ties and the identity of the recipient
3) Religious conviction
4) Knowledge and personal experience
First theme: Fear and body integrity
Fear which was mapped to the individual level of SEM was found to be a major player in deciding whether or not a person would sign up for the deceased organ donation program. All participants talked about their fear towards registering for the deceased organ donation program. The majority mentioned that it is actually their fear of pain, harm and of the unknown. Also, some participants thought that the word ‘deceased’ remind them of death which is something they fear. Also, the human body is a sanctifying component for many individuals’, and deceased organ donation was perceived as an action that dehumanise or imperil the dignity, identify or individuality of the body.
“It scares me, whenever I see this form, I feel as if I am signing on my death” (Participant 13, Female, 37 years old).
“Someone told me that basically the body feels after death, so you might feel that you’re being cut up.. and that.. that scares me. When I die, would I want to feel pain even after I die? NO!” (Participant 9, Male, 26 years old).
“I don’t want my body to be cut open and taking stuff from my body after I’m dead. Skin, heart, bones, everything, everything they’re taking its mine.” (Participant 6, Male, 22 years old)
Participants also talked about the importance of providing care for patient to prevent death. However, due to their mistrust in the healthcare system, they feared that interventions might be withheld, so that patients become eligible for the deceased organ donation program. Or that their organs will be unethically taken out or that they would be intentionally remove before the patient had died, and given to s pecific people due to lobbying.
“I do not trust them to do their best in saving my life if they knew that I have register for organ donation I prefer to die and take everything with me to the grave.” (Participant 2, Female, 42 years old)
On the other hand, some participants had an opposing perception, where they thought it is essential for the survival of those who are in need, where it was perceived by some participants as a “noble” act (Participant 6, Male, 22 years old). In fact, these participants thought that there is nothing to lose, so why not to donate.
“I’m not gonna lose anything, I am dead already, instead so many people might have a better quality of life because of my donation.” (Participant 7, Female, 19 years old).
Second theme: Family, relational ties and the identity of the recipient
Family, relational ties and the identity of the recipient is a theme that was mapped to all levels of SEM model as seen in Fig. 2. Although the program does not require family permission, some participants talked about the the fact that parental authority held the most sway, which is a cultural and religious matter. For participants, it was crucial to please their parents or family members even after death, and this is underpinned by their religious values. Pleasing parents was tied to getting awarded with heaven, therefore their approval was essential even if they were married. In addition, some participants (especially Arabs) talked about the hierarchy in family, where parents hold the highest rank and their decisions and not always negotiable. Another important aspect was wanting to make sure that family members and parents are prepared for this to avoid having them experience intense emotions and react hysterically.
“Well, I will need to check with my parents, I mean you know how things go (Laughs). You know what, if I tell my mom about this, she would go mad” (Participant 12, Female, 41 years old)
The identity of the recipient of organs was also important to participants, in a sense where they would be willing to donate only if the recipient was a family member, friends or to a person with same cultural or religious beliefs. However, this is not possible in the case of this program.
“No. Unless a family member or a friend needs it.” (Participant 6, Male, 22 years old)
“I would probably do it if it will go to Hindus only” (Participant 16, Female, 56 years old)
Third theme: Religious conviction
Religious conviction is another theme that was mapped to all SEM levels. Religion was found to be a major player in either encouraging or discouraging participants to register for the deceased organ donation program. One of the major issues that was reported by participants is the lack of clear guidance on whether this is acceptable from a religious aspect. Participants mentioned that they are unaware about the current religion’s outlook on deceased organ donation. Religious authorities should provide guidance about current practice of end-of-life organ donation and reach to a consensus, since the deceased organ donation religiously still seems to be an area of controversy in all religions. Participants felt that the conflict might be due to the conflict in the values of charity and having to maintain integrity of body and keep it intact.
“What I know that Islam forbid organ donation, and do not allow another Muslim to received organs. If there will be a clear FATWA from the head of FATWA then I have NO issue in donating my organs” (Participant 4, Male, 39 years old).
Fourth Theme: Knowledge and personal experience
Knowledge was mapped to two levels of SEM which are the individual and policy levels. Most participants were not fully aware of all the details regarding the deceased organ donation program, although they have heard about it. In fact, plenty of participants in their responses made it clear that they do not think of the program because they think it is not relevant to them, except the ones who have experienced it or witnessed someone going through the experience. Their limited knowledge and awareness about the program and the whole process seems to have afflicted the decision making regarding whether or not to register for the program. Alhough organ donation is very beneficial, most participants asked for more clarifications about the program, which is a clear indication that knowledge about the program was scarce. Also, they mentioned that the lack of campaigns to promote the program might also be an issue especially that deciding to sign up for the program is underpinned by numerous and complicated factors which has to be discussed in these promotion campaigns.
“Health authorities should talk about it, and there has to be more information from many bodies, at least the religious ones, how things will be done, how families will be informed and what if they disagree?” (Participant 14, Male, 28 years old)
Several participants reflected on their own experience or the experience of someone they know or close to them with the organ donation. In general, participants felt that this program will be of a great benefit because of their experience or what they have observed while watching someone going through it. In other words, their experience or observation served as a source of knowledge on how useful this program would be for many people.
“Yes, one of my best friends suffered for years from kidney failure and liver failure. And he went abroad to reach a kidney donor in China and to do the operation there. The liver donor was his son he has taken half of his son’s liver and did the operation in Singapore. If this program was available, he might not suffer all these.”(Participant 1, Male, 53 years old).