Stakeholders’ knowledge, perspectives and willingness to donate solid organs and associated ethical concerns in Uganda: a case study of Kampala

Abstract

Background The demand for human organs globally is higher than the supply. The government has enacted The Uganda Human Organ Donation and Transplant Act, 2022 aimed at regulating organ donation and transplant activities. There is however no documented information on the knowledge, ethical perspectives and willingness to donate organs for organ donation activities, thus a basis for this research. The main objective of the study was to assess stakeholders’ knowledge, explore perspectives, organ donation willingness and related ethical concerns in Kampala. Methods This study employed cross sectional, descriptive study design using qualitative methods of data collection, and was conducted in the five divisions of Kampala. Data were collected using indepth interviews (IDI) and focus group discussions (FGD). Up to 60 members of the general public participated in FGDs, and 6 religious leaders as well as 6 representatives of traditional leaders participated in in-depth interviews. Data analysis Thematic analysis was used to analyse data through transcribing the recorded messages, coding and developing key emerging themes. NVIVO version 11 software was used to organize the derived themes and to generate meaningful data. Findings This study established that most participants in the general public had limited knowledge about solid organ donation, with majority of participants exhibiting some knowledge about living organ donation but only the kidneys as the only body organ that could be donated. The study also established that most participants had mixed reactions over cultural and religious perspectives on organ donation with some indicating that it is acceptable while others reporting that it is not accepted. Most participants in this study were willing to be deceased donors and hesitant to be living donors with altruism as the main motivation for deceased donation and fear for poor health as the main demotivating factor for living donation. Conclusion Participants had limited knowledge about organ donation; there is no specific religion that is against organ donation, nor are their cultures forbidding organ donation. It was noted that most participants in this study were willing to be deceased organ donors for altruistic reasons Recommendations xvi This study recommends that there should be massive creation of awareness about organ donation, adopt ‘opt in’ system of consenting for organ donation, taking stock of religious and cultural views and integrating them into organ donation policies, and conducting research on post living donor health, ethical gaps and dilemmas and in order to understand and address fears and challenges that may hinder organ donation.