South Asian attitudes to organ donation
Although Asian people are three to four times more likely to need a kidney transplant than the general population, there is still a long way to go in terms of raising awareness.
South Asians make up 4% of the population, but nearly 14% of those registered as waiting for a kidney transplant are Asian and only 1% of those on the NHS Organ Donor Register are of Asian ethnic origin. In addition, UKT's Potential Donor Audit (for 24 months from April 2003) shows that the relatives of Asian potential donors are more likely to withhold consent for donation to take place than relatives of potential white donors. Indeed, the refusal rate for Asian people is 77%, compared with 35% for white people.
In 2006, UKT commissioned research to assess attitudes amongst South Asian and black communities towards organ donation and discover how best to reach black and South Asian people. Below are some of the findings relevant to South Asian communities.
Organ donation and the South Asian community
44% of people interviewed agreed with organ donation in principle. The majority of Bangladeshi people were either undecided (53%) about their views or against donation (31%). Most groups were in favour of living donation ( 60% Indian, 55% Pakistani and 30% Bangladeshi). In common with the rest of the population the majority of people (61%) had heard of the organ donor card but less people (32%) were aware of the NHS Organ Donor Register (ODR).
Despite the general knowledge of organ donation there was almost no awareness of how the issue was of specific relevance to South Asian people. In fact, the majority of people from all groups thought that Asian people were no more likely than white people to suffer from kidney failure. Many Asian interviewees knew people who have had transplants, had died waiting for organs or are waiting for transplants. However the majority of people did not make the connection between serious disease, increasing organ failure and the lack of organs from Asian communities.
Making the decision to register
When asked what would encourage them to join the register, 21% of people not already on the register said "helping someone to live". Knowing someone who needed a transplant would encourage a further 14% and 18% simply needed to know how to register. However a substantial number (26%) stated that nothing would encourage them to join the register.
Cultural and religious barriers
To better understand any lack of awareness or resistance to organ donation, the research investigated cultural or religious issues that might act as barriers for South Asian people. While 32% said they had never thought about joining the ODR, 21% of people stated that their religion did not allow it. This was particularly important to Pakistani (22%) and Bangladeshi (43%) people. 10% of people cited burial and funeral customs as a barrier to joining the register. For Indians there was the need for close family members to wash the body of the dead relative and cremate the body and Muslims needed to bury their loved ones quickly after their death.
Other reasons cited were fear of death - 13% of people were superstitious about death - and mistrust of the medical profession - some respondents felt that registering as a donor would mean that not everything would be done to save their lives in the event of a serious illness or accident.
Despite these barriers, the South Asian people interviewed stated that they agreed that it was important to help their community and "put something back". Also many Asians felt that "doing good", helping others and serving their community were fundamental parts of their religious faith. In fact, "doing something for your community" was a means of fulfilling aspects of Islam, Hinduism and Sikhism which dictated "doing wider good". Given that many respondents had initial misconceptions that their faith prohibited organ donation, this is an attractive counter-argument for donation.
