Willingness to donate eyes among outpatients attending Muhimbili National Hospital

Willingness to donate eyes and other organs in general is still unsatisfactory worldwide, specifically in low income countries including Sub-Saharan Africa where the awareness about eye and other organs donation is still low. Factors like religion may also affect people’s decision making in terms of organ donation. Therefore, it is difficult to have enough tissues for transplant and sustainable local eye banks.


Introduction
Eye donation is an act of high level kindness to humanity and the society which involve the will of a person to consent for removing one's eyes from the body after death (1)(2)(3).
Donated eyes are used to treat most cases of blindness due to corneal diseases by corneal transplant, but also they are used for research and teaching purposes. Corneal transplant remains the gold standard treatment for corneal blindness and it is the most common transplant performed worldwide with overall success rate of 85% (4)(5)(6).
Eye donation is a key factor for a sustainable corneal transplant services and eye banking.
However, willingness to donate eyes as well as other organs is a complex process with socio-cultural barriers (3,4,(7)(8)(9). The willingness of the family of a deceased donor to honor the will of their relative is the most important factor to make eye donation possible.
This influence of the next of kin of the deceased donor make eye and other organs donation to be not only an individual willingness but a familial mater (10,11).
The barriers to eye donation have the consequence that eye donation is still unsatisfactory worldwide and the number of patients in need of corneal transplant is far higher than the number of people willing to donate eyes (4,8,12). According to a global survey done on corneal transplant and eye bank; the ratio demand/supply is 70:1 worldwide and only 37.5% have adequate access to corneal transplant. Data from this survey showed that high number of people who have no access to corneal transplant services found in Africa and many countries of Asia (4).
In developed countries and some Asian countries like India, Malaysia and Singapore there is an increase in awareness on eye donation and the willingness to donate eyes due to influence of education and technology (2,3,5,13). In most African countries, the factors affecting willingness to donate eyes are not well studied and community education about eye donation is rarely done (2,4). Therefore, it is difficult to know the willingness and perception of the community towards eye donation.

Materials And Methods
This was a Cross-sectional hospital based study with quantitative and qualitative approach. It was conducted in Ophthalmology and ENT outpatient clinics, at Muhimbili National Hospital (MNH), Dar es Salaam/ Tanzania. The study was conducted from July 2017-December 2017).
All patients 18 years and above were eligible for the study. Patients with mental health problems and communication problems were excluded from the study.
Study participants for quantitative survey were chosen through systematic random sampling technique. A predesigned pretested Kiswahili questionnaire was used. The questionnaire was a forced choice format, but a free space was provided in case the participant had a different view. A face to face interview was conducted for all participants. The level of knowledge of participants was graded according to modified Bloom's cut off points as: High (≥8 correct answers →≥80%), Moderate (5to 7 correct answers→50%-70%) and Low (less than 5 correct answers→≤50%).
For the qualitative part of the study, Participants for qualitative data were selected by purposive sampling technique. Two focus group discussion (FGD) were conducted in Kiswahili at the end of quantitative survey; one for male (8 participants), and another for female (9 participants). Single-gender FGDs were chosen to allow free discussion and   expression of perceptions and emotions about organ donation. During FGD a guiding script   with open ended questions was used. It included questions about awareness, willingness and perceptions about eye donation. The discussion did not follow any structured order.
However, probing and additional questions were sometimes needed to guide the discussion and clarify unclear concepts. Audio tape was used to capture information emerged from FGD.
Data analysis: Quantitative data were imported in Statistical package for social sciences (SPSS) version.20 for analysis. Frequencies and proportions were selected for each variable of interest. Multinomial logistic regression was done to test association between willingness and other variables. Level of significance was taken at P value of <0.05. The tape-recorded discussions from FGDs were replayed then manually transcribed in Microsoft Word file to maintain the original meaning. FGD were translated in English and systematic thematic analysis was done, whereby all themes emerged from FGD were grouped accordingly.

Quantitative results
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) Qualitative results Different ideas about eye donation were revealed after analysis focus group discussion (FGD)and they were grouped in eight main themes:

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 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  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.
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.

Discussion
This study gave a baseline information about willingness and perception about eye donation in Tanzania. About one third of participants were aware of eye donation. The participants have low awareness about eye donation because the services have not yet started in Tanzania. However, these results are comparable with studies done in central Ethiopia and rural India (8,14). Among all participants who were aware of eye donation, majority knew that donated eyes are used for corneal transplant as compared to other uses like research and teaching. This also was reported in previous studies, where corneal transplant seemed to be the most known use of donated eyes (2,3,12,13).
Nearly a half of the participants were willing to donate eyes in this study, while only one third was aware. These results are similar to the study done in central Ethiopia, (8), but contrary to other studies like those done in Nigeria and Asia where the proportion of people willing to donate eyes seemed to be low compared to awareness (5,9,12,13,15,16). This disparity might be due to differences in socio-cultural beliefs.
Willingness to donate eyes is influenced by awareness, sex and religion. Respondents who were aware of eye donation were more willing to donate their eyes compared to others. This reality was shared by majority of studies done in various areas like in central Ethiopia, Singapore and north Ethiopia(8) Males were more willing than females and Christian were more willing than Muslims. The explanation of this fact may not be straight forward, but it may be due to differences in access to information and religious teachings.
The most common reason associated with willingness to donate eyes was "to help a blind person." Compassion and care to others is a natural character shared by humanity in different populations and culture. Participants explained that it is good to help a blind person with their eyes after death. This was also reported in studies done in central Ethiopia (8), Nigeria (16), Denmark (17), USA (18) and Asian countries (5,12,17). Lack of information affects the community perception and results in low willingness to donate eyes. Participants of this study in both male and female FGD raised that concern, explaining that education is important for the community to accept eye donation services.
Lack of information about eye donation was the first reason for unwillingness in other previous studies done in Nigeria and India (12,14,16,19).
Religious reasons were also associated with unwillingness to donate eyes in this study.

Religious beliefs are intertwined with people's life and have influence on their decision
making. Participant in FGD expressed a bond between religion and decision making, especially about the body and organs, and claimed that we are all created by God. Therefore, only God has power on our bodies and God will punish people who donated their organs. Beliefs about new life after death, make some people to think they will have a second life with incomplete organs if they donate some of them. Similar concerns were raised in the studies done in Ethiopia (8), USA (18) and UK (20), but less common in majority of the studies done in Asia (3,5,8,14).
Positive perception toward eye donation was seen in majority of our study participants.
They expressed that eye donation services contribute in reduction of blindness, but also will reduce the cost of corneal transplant. Professional benefits like jobs and learning opportunities for medical professionals are also expected from Eye donation services.
Majority of participants who had negative perception were more worried about organ trafficking". During FGD, participants gave a kind of warning to hospitals not to buy or to advertise organ donation because it can cause murders in the community. It is not ethical to advertise and to buy human organs. However, people are somehow suspicious because they

do not have clear information about it. Similar issues reported in Delta state /Nigeria , South
Wales/Australia as well as in the USA (16,18,20,21).
Negative perception was again associated with the fact that eye donation is a kind of "torture to the donor's". Participants in the current study during FGD seemed to be much concerned about the issue. Some of them were claiming that the dead person should be buried complete! To remove some organs from the body, would be disrespecting the deceased and violating human rights. The concern goes about cultural rituals associated with dead body but again stress to family members think that their relative's body will be incomplete, while others were wondering on how an organ of a dead person can live in the body of a living person. The same worries were raised in studies done in the UK, New South Wales/Australia and in Singapore (5,7,21).

Conclusion
The present study showed that majority of the participants were not aware of eye donation.
However, willingness to donate eyes was seen in nearly a half of the study participants.       Person to consult before writing a will for eye donation. Others included "children, blood brothers and blood sisters".

Supplementary Files
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