Barriers and facilitators toward deceased organ donation among general public and stakeholders in India.

Abstract

Background There is a shortage of organ transplants in India, with less than one donor for every one million population. In 2018, only eight percent of organ donors were from deceased organ donation in India. Therefore, the aim of this PhD study was to identify the barriers and facilitators toward deceased organ donation in India among public and stakeholders in India. Methods An integrative systematic review was undertaken to collect, collate, and identify the barriers toward deceased organ donation among Indians living globally from the existing evidence. Since the integrative systematic review informed that the decision toward organ donation is based on several layers of a society where they underwent socialisation, study 2, and study 3 were guided by the socio-ecological model and social constructivism philosophy. With more demand to understand this from the subjectivist point of view, both study 2 and 3 employed qualitative approach. Parallelly, a difference was identified in deceased organ donation performance within India. Therefore, study 2 and 3 were undertaken in a well-performing site (in and around Chennai, India) and a poorly performing study site (in and around Chandigarh, India) in India. Study 2 employed 25 focus group discussions among the general public from a well-performing and poorly-performing sites in India. Study 3 employed sixteen in-depth interviews with stakeholders involved in the making of deceased organ donations in those regions in India. Framework analysis was adopted for the data analysis of study 2 and 3, since it enables more case comparisons in identifying the similarities and differences, which was essential for study 2 and 3 between a well-performing and poorly performing regions in India, among general public and stakeholders. Findings There were several original contributions from this study undertaken in India. Firstly, the systematic review informed that the decision toward deceased organ donation among this population is not individualistic but collective. Secondly, though family is identified as a barrier among Indians, this study went further and identified that poor knowledge on how to begin such conversation, poor visibility on real organ donor and recipient stories, lack of knowledge on the process of registration served as real barriers in bringing such conversation among the family members. Thirdly, there was a conflict between the publics’ willingness to be an organ donor and uncertain knowledge on their respective religious standpoint, especially among the Islamic groups in India, which served as a barrier from religious practice viewpoint. Fourthly, misinformation, unsupportive environment, and mistrust in the healthcare system practices negatively influenced the participants view toward deceased organ donation practices in India. However, the barriers among the public from the well-performing and poorly performing study sites in India were identified to be similar and did not clearly explain the reason for their differences. Whereas the study undertaken among the stakeholders had distinctive features that could explain the practices within the hospitals which could explain the variations in deceased organ donation performances. Based on study 3, the well-performing study sites had a highly equipped and supportive system structures that enabled more donation compared to the poorly performing regions. The major elements that were identified to exist in a well-performing study sites in India were the existence of good teamwork with predefined accountability for each role player; the approach methods employed with the bereaved family members; ability of the transplant coordinators in making a trustable conversation and relationship; policies between the government and the police department to reduce the delays caused; higher coordination between the several stakeholders involved. Conclusion Therefore, though this PhD study further identified how various levels of a society serves as barriers and facilitators toward deceased organ donation, they were demonstrated to be similar across the wellperforming and poorly performing study sites. The clearly demonstrated barriers and facilitators identified to explain the well-performing and poor-performing study sites were based on the hospital level systemic practices. While opt-out countries like Spain majorly works with building up the network and infrastructure within the hospital, and UK majorly focusing on community engagement; at a policy level in an opt-in country like India, adopting both the approaches could help organ donation practices. While hospital level practices can help in improving organ donation across the various sites, community engagement can help in normalising the conversation on organ donation which in turn helps in creating an enabling environment toward organ donor registration. Therefore, this PhD findings in the Indian context argues for a whole systems approach to improve deceased organ donation in India.