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

Abstract

BackgroundThere is a shortage of organ transplants in India, with less than one donor for every one millionpopulation. 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 organdonation in India among public and stakeholders in India.MethodsAn integrative systematic review was undertaken to collect, collate, and identify the barriers towarddeceased organ donation among Indians living globally from the existing evidence. Since the integrativesystematic review informed that the decision toward organ donation is based on several layers of asociety where they underwent socialisation, study 2, and study 3 were guided by the socio-ecologicalmodel and social constructivism philosophy. With more demand to understand this from the subjectivistpoint of view, both study 2 and 3 employed qualitative approach. Parallelly, a difference was identifiedin deceased organ donation performance within India. Therefore, study 2 and 3 were undertaken in awell-performing site (in and around Chennai, India) and a poorly performing study site (in and aroundChandigarh, India) in India. Study 2 employed 25 focus group discussions among the general publicfrom a well-performing and poorly-performing sites in India. Study 3 employed sixteen in-depthinterviews with stakeholders involved in the making of deceased organ donations in those regions inIndia. Framework analysis was adopted for the data analysis of study 2 and 3, since it enables more casecomparisons in identifying the similarities and differences, which was essential for study 2 and 3between a well-performing and poorly performing regions in India, among general public andstakeholders.FindingsThere were several original contributions from this study undertaken in India. Firstly, the systematicreview informed that the decision toward deceased organ donation among this population is notindividualistic but collective. Secondly, though family is identified as a barrier among Indians, thisstudy went further and identified that poor knowledge on how to begin such conversation, poor visibilityon real organ donor and recipient stories, lack of knowledge on the process of registration served as realbarriers in bringing such conversation among the family members. Thirdly, there was a conflict betweenthe publics' willingness to be an organ donor and uncertain knowledge on their respective religiousstandpoint, especially among the Islamic groups in India, which served as a barrier from religiouspractice viewpoint. Fourthly, misinformation, unsupportive environment, and mistrust in the healthcaresystem practices negatively influenced the participants view toward deceased organ donation practicesin India. However, the barriers among the public from the well-performing and poorly performing studysites 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 thepractices within the hospitals which could explain the variations in deceased organ donationperformances. Based on study 3, the well-performing study sites had a highly equipped and supportivesystem structures that enabled more donation compared to the poorly performing regions. The majorelements that were identified to exist in a well-performing study sites in India were the existence ofgood teamwork with predefined accountability for each role player; the approach methods employedwith the bereaved family members; ability of the transplant coordinators in making a trustableconversation and relationship; policies between the government and the police department to reduce thedelays caused; higher coordination between the several stakeholders involved.ConclusionTherefore, though this PhD study further identified how various levels of a society serves as barriersand facilitators toward deceased organ donation, they were demonstrated to be similar across the wellperformingand poorly performing study sites. The clearly demonstrated barriers and facilitatorsidentified to explain the well-performing and poor-performing study sites were based on the hospitallevel systemic practices. While opt-out countries like Spain majorly works with building up the networkand infrastructure within the hospital, and UK majorly focusing on community engagement; at a policylevel 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, communityengagement can help in normalising the conversation on organ donation which in turn helps in creatingan enabling environment toward organ donor registration. Therefore, this PhD findings in the Indiancontext argues for a whole systems approach to improve deceased organ donation in India.

Date of Award	Aug 2023
Original language	English
Awarding Institution	University of Bedfordshire
Supervisor	Gurch Randhawa (Supervisor) & Erica Cook (Second supervisor)