Public opinion and perceptions of organ donation and transplantation among Asian communities: an exploratory study in Luton, UK

Abstract

There is a growing demand for human organs for transplantation, particularly of the kidney among the UK's Asian population which, due to problems with histocompatibility can only be met with a significant increase in the number of Asian donors. Only very recently have specific attempts been made to attract donors from Asian communities using ‘ethnically-targeted mass media’. However, there is little information available on the effectiveness of these initiatives in providing information with regards to organ donation for the Asian population. An exploratory qualitative study was therefore undertaken in relation to this issue among a cross-section of the Asian population of Luton. The findings show that detailed information related to transplantation activity has been learned only through the experience of people undergoing transplants within the community and has been transmitted through these various informal networks rather than through the resources provided by the Department of Health. The limited success of campaigns to date is reflected in the fact that nearly half of the respondents in this survey did not know what a donor card was used for and approximately half of these had never seen one; only 6 people had heard of the National Donor Register. Of the 3 people who carried a donor card, 2 had an immediate family member who had undergone a transplant. Another example of the failure to inform effectively the relevant populations about important developments is that only 2 of the 32 muslims in the survey had heard of the ‘fatwa’ by the Muslim Legislative Council permitting organ donation. With the urgent need for greater numbers of donors from the Asian population, appropriate strategies for effective provision of information concerning organ donation and transplantation need to be developed quickly before the crisis worsens.