General
Community Engagement: How to address complex cultural attitudes and approach to organ donation
A reluctance by some cultures for organ donation means that some patients can be disadvantaged in organ transplant opportunities.
There are longer transplant wait times for some blood types more than others. Although geography can be part of the problem (California has always had longer wait times than other areas). It is not only the amount of people in need of transplants, but it is also due to the availability of organs within certain blood types. Not all blood types donate equally. For example, there are fewer donors for B type blood causing the wait time to be much longer for those needing transplants who have B type blood.
We know it is critical to educate everyone on the need and process of organ donation, however it is not always easy to address personal or cultural differences when you do not share the same background. How do we open an honest discussion about the disparities within donation (from all sides), while being respectful to cultural and ethnic differences? How can we gain trust, support and action within the groups that are less involved with donation?
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Transplant Patient
I love how you phrased this. I would love to hear from members of our community who have more experience with having these types of discussions like @Srouse and @calanfoundation
Personally, I believe we need more people who are in these groups to lead the conversations. As a white Canadian, there are certain places where I can and should speak, and there are times when I need to be using my privilege to pass the mic to someone else who can better speak to the issues that need addressing.
Here in Canada, there is a medical anthropologist, Dr. Caroline Tait, who speaks often about the needs facing indigenous and First Nations people in Canada when it comes to transplantation. This is her culture, her background, and her specialty when it comes to advocacy, and it's taught me so many things I never would have thought of otherwise.
People talking about these issues are out there, they just might not have the same privilege and platform as white presenting, privileged individuals do. Rather than speak over them, I think we should intentionally seek out the people who are doing this work and amplify what they are already speaking about.
I agree 100%. I have two kids who have had transplants but we have recently come across some challenges with helping some friends who are from Nepal with navigating the health system and transplant world here in America. Our friend was told since he has B type blood, he will have about a 9 year wait for a deceased donor transplant because of where we live and the limitation of B donors. We are working on sharing their story specifically into communities with a shared culture and ethnicity to see if we can get more involvement and support but I want to make sure it is received in the context of which it is intended which is opening up a dialogue and asking for help and community involvement and not an outsider trying to tell them something they dont want to hear.