Abstract
Background: To determine the knowledge, attitudes and practices regarding organ donation in western India. Methods: Convenience sampling was used to generate a sample of 250; 200 interviews were successfully completed and used for analysis. Data collection was carried out via face to face interviews based on a pre-tested questionnaire in selected public areas of Ahmedabad, Gujarat state of India. Data entry was made in excel software in codes and analysis was done by SPSS software. Results: About 86% of participants were aware of the term organ donation but knowledge about its various aspects was low. About 48% aware people heard about organ donation through medical fraternity, whereas only about 21% became aware through mass media. About 59% of aware people believed there is a potential danger of donated organs being misused, abused or misappropriated. About 47% of aware people said they would consider donating organs, while only 16% said they would definitely donate irrespective of circumstances. Around 97.67% participants said they would prefer to donate to nonsmokers. About 74.41% participants were unaware about any legislation regarding organ donation. About 77% participants showed their will to donate to mentally sound persons, and 42.04% participants showed their will to donate even physically challenged people. Around 78 participants felt that they would donate organs to persons irrespective of their religion. About 81% of aware people were of the opinion that consent for organ donation after death should be given by family members. None of the interviewed participants had a donor card. Conclusion: Better knowledge and awareness will help in promoting organ donation. Effective campaign needs to be driven to educate people with relevant information with the involvement of media, doctors and religious scholars.
Introduction
The issue of organ donation is a multifactorial and complex one, involving legal, ethical, medical, organizational, and social factors.Citation1–4 Organ shortage is a global problem, but India lags far behind the western world. Organ donation following brain stem death is uncommon in India. The current organ donation rate for cadaver in India is 0.08 per million, while Spain tops the list with 35 per million.Citation5 There is a huge shortage of organs in India, and majority of organ failure patients die while on the waiting list for lack of timely availability of organs. Only 5% of all patients with end-stage kidney disease undergo kidney transplantation in India.Citation6 Legislation for human organ donation in India came in 1994 in the form of “The transplantation of Human Organs Act, 1994”.Citation7 Yet even 20 years since the country passed the act, only kidney donations by live donors are in vogue and cadaver donations are still very few. Certification and declaration of brain death is mandatory in transplant hospitals and in non-transplant organ retrieval centers registered under the Human Organs Transplant Act, 1994. Every year, nearly six lakh people die due to organ dysfunction. In comparison, with 70% of India’s 1.4 lakh accident victims being diagnosed as brain dead annually, the country has nearly 80,000 potential cadaveric organ donors. Yet, organs from only about 120 are retrieved according to the MOHAN Foundation, making the percentage of cadaver donations merely a dismal 0.08 per million of the population. In most developed countries, the cadaveric organ donation is about 25–30%, which results in 90% of all organs for transplants coming from cadaveric donors.Citation8 One of the greatest roadblocks to organ donation is the refusal of family consent.Citation9 Myths and misconceptions along with a general lack of awareness add to the low percentage of cadaveric donations. As per recent reports, Tamil Nadu state tops the list; with an organ donation rate of almost 1.3 per million population in 2012.Citation10 Trained staff with adequate infrastructure significantly increased organ donation rates.Citation11 Horton and Horton’s model of factors related to organ donation indicates that knowledge and attitudes were the strongest predictors of organ donation, with personal values playing a much weaker role.Citation12 Indeed these are shown to be essential factors to foster an atmosphere that favors increase in organ donation rates.Citation13–15
The purpose of this study was to assess knowledge, attitude and practices about organ donation and to study the association of sociodemographic factors with knowledge, attitude and practice of organ donation among selected adult population in western India.
Materials and methods
A cross-sectional study was done among 200 adult participants aged 18 years and above in a residential area near a tertiary healthcare centre in Ahmedabad city of Gujarat, India. Exclusion criteria were: (1) people or their families who have undergone transplantation and (2) persons working with or related to organ donation centers. Prior approval of the institutional ethics committee was obtained. Participants were randomly selected. All the selected participants gave their written consent to participate in this study. Respondents were interviewed by the authors with a formulated questionnaire which was made keeping in mind various local factors that may influence organ donation. Knowledge of the respondents was assessed through questions regarding meaning of the term “organ donation”, awareness of donation by living people as well as cadavers, risks involved in organ donation, and the sources of information for their knowledge. Attitudes of the respondents towards organ donation were determined through questions regarding opinions on issues such as willingness to donate organs in the future, influence of religion on attitude towards organ donation, allowance for incentive based organ donation, and factors influencing choice of recipient for future potential donation. Participants who had not heard of the term “Organ Donation” were not asked to answer further questions in the section. Data entry was made in excel software in codes and analysis was done by SPSS software. Descriptive statistical analysis, which included frequency, mean and percentages, was used to characterize the data.
Results
Awareness about organ donation
Among the participants of 200, 172 were aware of term organ donation, whereas 28 participants had never heard of the term organ donation. Majority of aware participants were male (65.1%) as shown in . Among the 28 participants who were unaware of the term organ donation, it was found that 12 had completed graduation ( and ).
Table 1. Sociodemographic profile of participants aware of term organ donation.
Table 2. Sociodemographic profile of participants unaware of term organ donation.
Source of information about organ donation
About 48% aware people came to know about organ donation through medical fraternity, whereas only about 21% became aware through print and electronic media. About 31% of people heard about organ donation through a friend or colleague ().
Table 3. Source of information about organ donation.
Meaning of organ donation
About 15% of respondents believed that “organ donation” means the removal of tissues from the body of a cadaver, while 28% believed that “organ donation” means the removal of tissues from body of a living human for the purpose of transplantation to another human. About 56% of people knew that both responses are correct in regard to organ donation.
Awareness about legislation
We found that 74.41% participants were unaware about any legislation regarding organ donation ().
Table 4. Are you aware of any local or international legislation with regards to organ donation?
Consent for organ donation
About 59% respondents agreed that the individual himself should be the one giving consent for a living donation. About one-third of respondents were of the opinion that the family (parents) should give this consent, while 8% felt that spouse should give this consent. Regarding consent after death, 100% said that the spouse or family should give consent for organ retrieval ().
Table 5. Consent for organ donation.
Fate of donated organ
About 59% of participants believed that there is a potential danger that organs could be misused, abused or misappropriated ().
Table 6. Do you believe that there is a danger that donated organs could be misused, abused or misappropriated?
Willingness to donate
The majority of participants (53.5%) said they will think about donating their organs. Only about 2% said they would not consider donating their organs ().
Table 7. Willing for organ donation.
About 34% of male respondents said they would definitely want to donate irrespective of circumstances, whereas only 17% females were of similar opinion.
An overwhelming 97.67% of participants said they prefer to donate organs to recipients who do not smoke ().
Table 8. Who would you like to donate to?
While 50% participants said they would prefer to donate to middle aged (30–50 years) persons, 43.18% showed preference to donate to younger age persons (<30 years). Only 6.81% will prefer to donate organs to older persons ().
Table 9. Who would you like to donate to?
While 79.77% participants showed their will to donate to mentally sound persons, only 20.22% were willing to donate to mentally retarded people too ().
Table 10. Who would you like to donate to?
About 58% participants were willing to donate to physically normal patients only, whereas 42% participants showed their will to donate to physically challenged people also ().
Table 11. Who would you like to donate to?
We found that 78.16% participants showed willingness to donate organs to persons irrespective of their religion, whereas 21.83% participants wished to donate organs only to persons belonging to same religion as theirs ().
Table 12. Who would you like to donate to?
Approximately 51% participants were of view that in case of unclaimed dead bodies, decisions regarding organ donation should be made by medical colleges/hospitals/doctors, while 23.86% and 17.04% people said that this should be done by charitable organizations and police departments respectively ().
Preference for donation
About 65% participants said they would like to donate organs to any person, whereas 25% said they would like to donate to their family members only ().
Table 13. Who should make decisions about organ donation in case of unclaimed dead bodies?
Table 14. Would like to donate to.
About 77% of respondents said that health status of recipient holds maximum importance when making a decision about donating an organ ().
Table 15. Which of the following factors holds the greatest importance near you when donating an organ?
Religious factors
About 87% aware participants said that their religion allows for organ donation, whereas the rest did not know about any views of their religion towards organ donation ().
Table 16. Does your religion allow organ donation?
Promotion of organ donation
All our participants were in the favor of promotion of information and practices regarding organ donation.
Donated an organ
No participant had ever donated an organ.
Organ donation registration
None of the respondents had registered for organ donation.
Discussion
Discussion primarily focuses on participants aware of term organ donation. In this study, only 6.6% of aware participants knew that all of the following organs like kidney, eyes, blood, liver, lung, heart and bone marrow can be donated. It was less than the findings from a study by Taimur Saleem et al.Citation16
About 86% participants were aware about the term organ donation. This awareness was quite high compared to a study by Odusanya et al.Citation17 done in Nigeria which showed that 60% respondents heard of term organ donation.
About 48% participants became aware about organ donation through medical fraternity, whereas only about 21% heard through print or electronic media. About 31% of participants had heard about organ donation through a friend or colleague. A study done in California by Saub et al.Citation18 revealed that speaking to a physician about organ donation positively influenced the likelihood to donate an organ. We feel that such a communication can be effective and may be utilized in general practice.
Awareness about the Transplantation of Human Organs Act is low among our study participants, 74.41% of them were unaware about any concerned legislation related to organ donation. Our findings were similar to those by Wig et al.Citation19 in Delhi, where this was between 76% and 93% among school children, office goers and villagers. Thus, spreading awareness regarding the Act that laid down the guidelines for organ transplantation in India becomes quintessential in the study region to bust any myths or prejudices and encourage informed willingness to donate.
In our study, 56% of the participants knew that organs can be donated both from living person as well as from cadavers. This was found to be higher than the study by Taimur Saleem et al.Citation16 in which it was 23%.
Our study found that 59% respondents felt the donor should be the one who can give consent for a living donation. About 33% respondents thought that the family should give this consent, while 8% opined that spouse should give this consent. In a similar study by Taimur Saleem et al.Citation16 it was found that 76% of respondents felt donor should be the one to decide. Regarding consent after death, 100% participants in our study said that the spouse or family should give consent, while only 52.8% of respondents of Taimur Saleem et al.Citation16 agreed to the same.
A positive response for their own organ to be donated was shown by 53.5% of our study population. This finding was quite similar to a study done in China by Zhang et al.,Citation20 where 49.8% respondents were willing to be living organ donors. And it was much lower than a study by Ohio et al.,Citation21 where over 96% of respondents showed a favorable response towards donation. Out of aware participants 65% showed willingness to donate to any person including family, friend or stranger, while 25% said they would donate to their family members only. In a study by El-Shoubaki et al.Citation22 from Qatar, most of the subjects preferred donating organs to their relatives and friends only.
About 87% of aware participants said that their religion allows for organ donation, whereas the rest had no idea regarding religious views about organ donation. India is the world’s most culturally, linguistically and genetically diverse country. Religious beliefs and preaching have a deep impact on the attitude and behavior of people. As per our knowledge, there is no religion which prohibits organ donation. This needs to be conveyed by religious and political leaders in order to foster a positive approach towards organ donation.
All our respondents were in favor of promotion of organ donation in India. Similarly 87% of respondents were in favor of organ donation promotion in a study by Coelho et al.Citation23
No participant had ever donated an organ up to the time of study. None of them had registered for organ donation either. This observation was very less when compared to 63% in Italy as observed by Burra et al.,Citation24 58.3% in Germany by Schaeffner et al.Citation25 and 43% in England as noted by Cantwell et al.Citation26
A potential possibility that donated organ could be misused, abused or misappropriated in any way was felt by 59% of aware participants in our study. Therefore, it becomes essential to assure people that rich or influential persons are not given any priority; in reality the organ allocation system is blind to wealth or social status. Factors such as race, gender, income or celebrity status are never considered when determining organ recipients. The organ allocation process needs to be transparent in order to gain confidence of the people.
India with a high annual organ failure burden and low organ donation rate shows a large chasm between those in need of transplantation and those who obtain one. While this is definitely a huge statistical setback, it also demonstrates a potential for improving the scenario. This would require a combination of better awareness and positive attitude towards organ donation among people, organized infrastructure in place for organ procurement, preservation and transplantation, strict guidelines for ethical practice and a strong political will.
This cannot be achieved without the combined efforts of medical fraternity, religious and political leaders, social workers, media and propaganda. We feel that although a general change in attitude of people takes time and efforts, it would go a long way in achieving the optimum care that we can offer to those in need.
Conclusions
This study shows that there is willingness of participants for organ donation; however none of them had registered for donation so far. As there is a huge gap between requirement and availability of organs for transplantation in India, it becomes necessary to actively educate people about organ donation, its procedure, legislature and how one can register. This would require active involvement of healthcare, media, religious and political persons, and such an informed awareness would go a long way in improving the expectancy of patients in need.
Limitations of study
Small study size and all participants belonged to Hindu religion.
Declaration of interest
The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the article.
References
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Appendix
Attitude and awareness towards organ donation in western India
Questionnaire
Section 1
(1) Age (in years):
(2) Sex:
(a) Male (b). Female
(3) Occupation:
(a) Student (b) Housewife
(c) Government employee (d) Non-government employee
(e) Volunteer (f) Self-employed
(g) Retired (h) Unemployed
(4) Education:
(a) Primary (till class 5)
(b) Secondary (till class 10)
(c) Higher secondary (till class 12 or equivalent)
(d) Graduation
(e) Post-graduation studies
(f) Informal education
(g) Diploma
(h) Can read and write name only
(i) Illiterate
(5) Marital Status:
(a) Single (never married) (b) Married
(6) Religion:
(a) Islam (b) Christianity
(c) Hinduism (d) Others (specify) ________________
Section 2: Organ Donation (Part A)
(11) Have you ever heard of the term “Organ Donation”?
(a) Yes (b) No
*Please don’t go further if you answered No/Don’t know to the above question.
(12) Your attitude towards the possibility of your own organs being used for donation?
(a) Would never consider donating an donate
(b) Will think about it
(c) Would only like to donate under other special circumstances
(d) Would definitely want to donate irrespective of circumstances
(13) Does your religion allow organ donation?
(a) Yes (b) No (c) Don’t know
(14) Do you believe that there is a danger that donated organs could be misused, abused or misappropriated?
(a) Never (b) Sometimes (c) Often (d) All the time
(15) Who would you like to donate your organs to? (Please pick one option from each set)
A. (a) Family member (b) Stranger
(c) Friend (d) Can be anyone
B. (a) Smoker (b) Non-smoker
C. (a) Drinker (b) Non-drinker
D. (a) Young person (≤30 years) (b) Middle aged (30–50 years)
(c) Elderly person (>50 years)
E. (a) Mentally retarded person (b) Mentally sound people
F. (a) Physically disabled (b) Not physically disabled
G. (a) Person belonging to same religion
(b) Person belonging to different religion
(16) Which of the following factor holds the greatest importance near you when donating an organ? (Choose one option)
(a) Relation to the person (b) Age of recipient
(c) Religion of recipient (d) Health status of recipient
(17) For living donation, who should give consent?
(a) Donor (b) His family
(c) His spouse (d) His friends
(18) For donation after death, who should give consent?
(a) Family
(b) Spouse
(c) Friend
(19) Who should make such decisions about organ donation in case of unclaimed dead bodies?
(a) Charitable organization
(b) Medical colleges/doctors
(c) Police
(d) A judge
(e) No one
(20) Should organ donation be promoted?
(a) Yes (b) No
Part B
(21) Do you know of anyone who has donated an organ?
(a) Family member (b) Friend (c) Colleague (d) No one
(22) Have you ever donated an organ?
(a) Yes (b) No
Part C
(23) The term “Organ Donation” means?
(a) the removal of the tissues of the human body from a cadaver
(b) the removal of the tissues of the human body from a living donor.
(c) the removal of the tissues of the human body for the purpose of transplantation to another person
(d) All of the above
(24) You heard about organ donation through which of the following sources? (You can choose more than one option)
(a) Heard from a doctor (b) Internet/online resources
(c) TV (d) Radio
(e) Newspaper or magazines (f) Friend or colleague
(25) Why is organ donation done?
(a) To save someone’s life
(b) Out of compassion/sympathy
(c) For money
(d) As a “responsibility”
(e) Others (specify)
(26) What organs can be donated? (You can choose more than one option)
(a) Kidney (b) Blood
(c) Heart (d) Eyes
(e) Liver (f) Skin
(g) Bone marrow (h) Lungs
(j) All of above (k) None of the above
(27) Does organ donation involve any risks?
(a) Yes (b) No (c) Don’t know
(28) Are you aware of any local or international legislation with regards to organ donation?
(a) Local legislation (b) International legislation
(c) Both of the above (d) None of the above
(29) Is there any need for having effective laws to govern the process of organ donation?
(a) Yes (b) No
(30) Are current measures taken by government effective to promote organ donation
(a) yes (b) No
(31) Which of the following measures taken by government according to you would b more effective in promoting organ donation?
(a) monetary benefit to donor family
(b) giving awards
(c) free health treatment for donor family
(d) all of above
(32) Have you registered for organ donation (donor card)
(a) Yes
(b) No
*THANKYOU FOR YOUR VALUABLE TIME AND EFFORT
*ANY SUGGESTIONS/OPINIONS REGARDING THE QUESTIONNAIRE & ITS IMPROVEMENT ARE MOST WELCOME