A total of 434 participants were interviewed in this study. Females were 58.0%; Female to Male ratio was1.4:1. The most frequent age group was between “18-33” years (44.93%) (Table 1). Among all participants, only 32.5% were aware about eye donation (Figure 1). For participants who were aware about eye donation, more than a half (59.6%) had moderate knowledge about eye donation and only 2.1% had good knowledge about eye donation (Table 2). Among participants who were aware of eye donation, 83.7% knew that donated eyes are used for corneal transplant (Table 3). The proportion of participants who were willing to donate eyes was 47.9% (Figure 2). The most frequent reason for willingness (64.25%) was to help a blind person, while lack of information was the most frequent reason for unwillingness (31.72%) (Table 4). Multinomial logistic regression showed that willingness to donate eyes was associated with awareness P<0.0001), religion (p=0.010) and sex (p=0.049) (Table 5). Eighty-two percent (82.3%) of study participants agreed that eye donation is important (Figure 3). The most frequent reason associated with positive perception was that “eye donation can reduce the burden of blindness” (83.5%), while negative perception was mainly associated with the fact that “eye donation can cause organ trafficking” (53.5%) (Table 6). Nearly half (45.2%) of the participants who had positive perception believe that to become an eye donor is a personal decision. (Figure 4)
Different ideas about eye donation were revealed after analysis focus group discussion (FGD)and they were grouped in eight main themes:
Theme 1. Helping others
Some participants perceived eye donation is a good thing to be done: Something to help a sick person, it cannot be a problem. As the blood, even though with the blood you are still alive but it is the same, to help a person who is alive. (FGD, female)
Eye donation is good if it does not affect the donor’s appearance: For me if you tell me to donate my eyes after my death to help another person, there is no problem as long as my look will not be affected. Because if my children see me at last they may run away saying this is not our mum. If I will look normal, no problem. (FGD, female).
Theme 2. Religion
Participants who were not willing to donate raised the issue of religious beliefs. The concern of after life was revealed, there is a possibility that people will be resurrected without their eyes if they donate them: We were told that there is resurrection after death, one will ask, when the end comes and being resurrected he/she will not have an eye (FGD, Male).
Others fear to be answerable before God, but also think that transplant seems as if people want to challenge God in creation: Myself I cannot accept to donate. First of all, in my religious beliefs, God created everybody with his/her organs. As you remove my organ and put it in another body, it is as if you are teaching God to create. Then if God protected me with all my organs up to my death, if you remove some of them and I am going to Him, I think it is not right! (FGD, Christian)
Theme 3: Fear
Personal fear emerged as a barrier to donate: For me, I don’t want to comment anything because I see huuum! to be removed an eye is another story. I take it in another perspective. I see aaaa! I cannot donate my eyes even if I am dead…. I don’t know I am scared. (FGD, female)
Fear of the community harm to donors by people who have relatives in need of organ transplant was raised: It is suspicious. Assume I know you as an eye donor and you have good vision, I can plan and kill you so that your eyes are given to my relative who is in need of them. (FGD, male).
A kind of jealousy was expressed, where family members of the donor may feel bad seeing the recipient of their relative’s eyes: This issue of allowing someone else to use the organ of your close relative is difficult. Imagine your father is dead, his eyes are used by someone else and he/she is enjoying life, seeing him/her is really painful.” (FGD, male).
Theme 4. Death and body respect
Traditional beliefs associated with death were raised as far as eye donation is concerned. Eye donation services are thought to be disrespectful of the deceased: In our African community and Tanzania specifically, it is important to respect the body of a dead person. If you start saying the need of removing eyes, it can bring problems. (FGD, female).
Lack of knowledge make some people to think that eye donation services are illegal: I think that to receive an organ from a dead person is against human right, why take an organ from a dead person and give it to a living one? A person should be buried complete. (FGD, male).
Emotions and fear associated with death were also expressed: To remove eyes while a person is dead!! It is still a big problem. In normal circumstances just like that!! (FGD, female)
Natural fear of a dead person may lead people to refuse donated eyes: I don’t think that people will accept to receive eyes from a dead person. I don’t think so. (FGD, female).
It is not good to ask for consent for organ donation while a person is dying, that can increase stress for relative and hinder willingness to donate eyes: Talk to healthy people. go in schools and somewhere else, let people sign while they do not show any sign of disease or death, like in blood donation. But if you wait for somebody to be sick and you start telling people “we need eyes of your relative. eeh! (FGD, female).
It may be difficult to talk about eye donation with somebody who is not stable emotionally: To discuss eye donation with relative is not easy. First of all, you have to know that they have lost their beloved one! (FGD, female).
Theme 5. Organ trafficking
Participants raised the issue of advertisement as people may be worried about it: It should not be a business to advertise because people will think of organ trafficking or witchcraft. Yeah, do not advertise people’s organs. Give education but not advertisements. (FGD, female).
Warning about buying organs was given in these words: If you will be buying organs, it will cause murders in the community. But if you put a clear process to donate, nothing bad will happen. (FGD, female).
Theme 6: Community education
Community education was the main condition under which eye donation can be accepted: First you provide education to people regarding eye donation, when they are educated, they will just accept, what matters is education (FGD, male). Education about eye donation is important to avoid negative perception: If the community is educated, then people will be able to differentiate between legal and illegal things. (FGD, female)
People who benefited from donated eyes are good witness to educate the community: I was just saying that, people who have been benefited from this service should come out as vivid examples so that other people or the whole community would see the importance of this service (FGD, male.
Theme 7. Benefit of eye donation services
Health benefit: Eye donation in the country will contribute in lessening the burden of blindness: it will reduce the number of blind people, people will have their sight back and continue with their daily activities, because the dead person has no any potential, instead of being buried with the organ, it is better to give to someone who is still alive. (FGD, male).
Eye donation services will help blind people to be productive again: It will increase manpower, I have an example of my uncle, who got education through government, and then he has his leg amputated, he cannot work anymore hence the decrease of manpower, but as for this when this comes, it will increase manpower. (FGD, female)
Economic benefit: It will reduce the cost of corneal transplant: It will reduce the cost of treatment, you know going abroad for treatment, and getting treatment in the country are two different things, it will reduce the cost, for transport, accommodation and food (FGD, female).
Money being send abroad for this services will remain for the benefit of the country: It will help. Our money instead of taking it to foreign countries, it will just remain here for the development of our country. (FGD male).
Professional benefits: Professionals will increase in our country, people will get jobs in that knew field of work: When this service is put in place, our people will benefit, because they will just go and specialise on that issue. Other people will be hired to work in those services. (FGD, female).
Local doctors will gain trust from the population: You know we tend to trust doctors from foreign countries but if the service will be efficient here, we will also trust our own doctors. (FGD, female).
Theme 9. Decision making about being an eye donor.
To became an eye donor is personal decision, but family members should be informed to avoid any misunderstandings when the donor is gone: For me that one, I see it is my personal decision, but it is mandatory to tell my relatives that I signed a donor card that my eyes will be taken after my death. By informing them, at the time of my death they will not be astonished (FGD, female). Firm decision to be an eye donor is necessary to convince family members: That is like sacrifice. If I decide to help someone with my eyes after my death, I will educate them and tell them that it is a sacrifice to give sight to someone because I am no longer alive…so they won’t refuse. Telling them before or after I sign, it won’t change my decision. (FGD, female).