Why are we Poor Organ Donors: A Survey Focusing on Attitudes of the Lay Public From Northern India

Background: Knowledge, sociocultural views, and awareness about organ donation in the general population are important for the success of deceased organ donation. There is an urgent need to gather this information in order to find out the reasons for poor organ donation rates in India. Methods: A 30-item questionnaire was designed in the English and Hindi language and was administered to the lay people in order to assess their knowledge, views, and attitude regarding brain death and organ donation. Results: Three hundred and fifty-two people (male: female = 202: 150; mean age = 30.6 +/- 13.9 years) completed the questionnaire. Only 70% of the people were aware that the organs can be donated after brain death and only 44% thought that they understood the meaning of brain death. Media and Internet were the preferred sources for seeking information on brain death and organ donation. The majority of people (81.2%) were willing to donate organs after brain death but only 1.4% had registered for organ donation. Lack of awareness (80.1%), religious beliefs and superstitions (63.4%), and lack of faith in the healthcare system (40.3%) were believed to be the most important reasons for poor deceased organ donation rates in India. The survey also highlighted the importance of the opinion of family members and the religious leaders in making the decision for organ donation. Educational qualification above matriculation was significantly associated with the knowledge of brain death and the willingness for organ donation. Conclusion: Lack of awareness appears to be the most important factor for low donation rates in India. Educating people by using media and Internet and conducting awareness programs may help in improving the donation rates.