9/29/2016 Great & Growing Need Knowledge and � Diabetes rates are much higher and rising more Spirituality surrounding quickly Organ Donation in the � Prevalence of end-stage renal disease is 3.5 times Native American higher compared to Caucasians Community � Dialysis is not the answer Tasce Bongiovanni, MD, MPP � Native Americans donate at Robert Wood Johnson Foundation, Clinical Scholars Program half the rate of the general Yale University, School of Medicine General Surgery Resident population University of California, San Francisco Community Partnership � Community Based Participatory Research principles throughout � Connecticut Native American Inter-Tribal Urban Council � Other Partnerships 1
9/29/2016 Study Aims Survey Development Understand Factors Associated with 63 items from published instruments Items Organ Donation among Native Americans Knowledge : Organ Donation and Scales Transplantation Knowledge Survey Develop a Culturally Appropriate and Attitudes : Organ Donation Attitude Relevant Survey to Explore Cultural Beliefs about Organ Donation among Survey Native Americans Spiritual beliefs : Spiritual Beliefs Scale about Organ Donation Survey Development Surveying the Community � Regional Pow Wows 1:1 Cognitive Tests & Interviews Data Collection � Major Themes: 22 Native Americans: � Knowledge Ages 19-70, 13 tribal affiliations. � Spirituality Sample Purposeful Sampling � Trust � Family Involvement Data Iterative Response Analysis Analysis 2
9/29/2016 Analysis Sample Demographics Participants N=183 � Describe demographics Willingness to Donate 71% � Examined bivariate associations between intention to Tribal Affiliations 55 (n) donate and demographics Male 43% � Examined bivariate associations between intention to Age (range) 18-78 years donate and factors such as knowledge, spirituality and trust Age (average) 43 years Education: high school 76% � Stata SE 13.1 graduates Speak Native Language 20% Practice Native Religion or 28% Spirituality Domain: Spirituality Domain: Spirituality Strongly Agree or Agree If I donated my organs, I would worry that my spirit 17% would not be at rest. It is wrong for me to donate my organs because I am 14% making myself incomplete. I believe that donating my organs will disturb my 15% passing process. 3
9/29/2016 Domain: Trust Domain: Spirituality Strongly Willingness to Agree or Donate (OR) Agree If I donated my organs, I would worry that 17% 0.21 * my spirit would not be at rest. It is wrong for me to donate my organs 14% 0.08 * because I am making myself incomplete. I believe that donating my organs will 15% 0.14 * disturb my passing process. Domain: Trust Domain: Trust Strongly Agree Strongly Willingness or Agree Agree or to Donate Agree (OR) I trust that doctors and hospitals use donated 76% I trust that doctors and hospitals use 76% 2.29 * organs as they are supposed to be used. donated organs as they are supposed to be used. I don’t think that doctors would try as hard to 28% I don’t think that doctors would try as hard 28% 0.22 * save my life if I were an organ donor. to save my life if I were an organ donor. Native Americans wait longer for kidney 76% Native Americans wait longer for kidney 76% 0.44 transplants than non-Natives. transplants than non-Natives. 4
9/29/2016 Domain: Knowledge Knowledge Questions Strongly Agree/Agree (%) The matching process for an organ donor is based on 97% blood type and certain health conditions. You can donate certain organs while you are alive and 37% healthy. High blood pressure and diabetes are two of the most 85% common causes leading to people needing a kidney transplant. Transplant recipients can live for many years after a 92% transplant operation. High blood pressure and diabetes are common diseases 93% among Native Americans. Knowledge Questions Knowledge Questions Strongly Agree/Agree Strongly Agree/Agree (%) (%) The matching process for an organ donor is based on 97% The matching process for an organ donor is based on 97% blood type and certain health conditions. blood type and certain health conditions. You can donate certain organs while you are alive and 37% You can donate certain organs while you are alive and 37% healthy. healthy. High blood pressure and diabetes are two of the most 85% High blood pressure and diabetes are two of the most 85% common causes leading to people needing a kidney common causes leading to people needing a kidney transplant. transplant. Transplant recipients can live for many years after a 92% Transplant recipients can live for many years after a 92% transplant operation. transplant operation. High blood pressure and diabetes are common diseases 93% High blood pressure and diabetes are common diseases 93% among Native Americans. among Native Americans. 5
9/29/2016 Knowledge Questions Knowledge Questions Strongly Agree/Agree Strongly Agree/Agree (%) (%) The matching process for an organ donor is based on 97% The matching process for an organ donor is based on blood 97% blood type and certain health conditions. type and certain health conditions. You can donate certain organs while you are alive and 37% You can donate certain organs while you are alive and 37% healthy. healthy. High blood pressure and diabetes are two of the most 85% High blood pressure and diabetes are two of the most 85% common causes leading to people needing a kidney common causes leading to people needing a kidney transplant. transplant. Transplant recipients can live for many years after a 92% Transplant recipients can live for many years after a 92% transplant operation. transplant operation. High blood pressure and diabetes are common 93% High blood pressure and diabetes are common diseases 93% diseases among Native Americans. among Native Americans. Conclusions Implications � Knowledge is high � Knowledge in general about organ donation is not the problem � Factors of trust and spirituality highly associated with willingness to donate � Building trust between the Native community and the medical establishment might increase willingness to � Spirituality relating to organ donation was significant but donate represented small part of our sample � Focusing education and awareness around LIVING � Though knowledge is high, there is confusion about living donation could increase the number of living donors donation within the Native community 6
9/29/2016 Limitations Thank you � Robert Wood Johnson Foundation Clinical � We did not interview youth Scholars Program � Self selection bias � Veterans Administration � May not represent all Native Americans as tribes are � Community Partners, especially Connecticut Native American Inter-Tribal Urban Council diverse � Project Team: Jim Rawlings, Joyce Trompeta, � Exploratory in nature only Marcella Nunez-Smith, � Surveyors: Sebastian Medina-Tayac, Theodora Simon, Nicholas Friedlander � Joseph Ross, Program Advisor � Everyone at RWJF CSP Yale!!!!! Final Survey, page 1 Final Survey, page 2 I know someone who donated an organ while they were still living � Transplant recipients can live for many years after a transplant operation. � I know someone who donated an organ after they died � High blood pressure and diabetes are two of the most common causes leading to people � needing a kidney transplant. I know someone who has received an organ transplant � You can donate certain organs while you are alive and healthy. � I have received education about organ donation in general � A patient can receive an organ transplant from a living donor. � I am registered as organ donor on my driver’s license � A matching process for an organ donor is based on blood type and certain health � conditions. I am willing to have my organs donated after my death. � The matching process for an organ donor is based on genetics. I could need an organ transplant at some point in my life. � � After receiving a transplant, the person is never well enough to return to a normal healthy The types of diseases that lead to the need for transplant are unusual and rare. � � life. High blood pressure and diabetes are common diseases among Native Native Americans wait longer for kidney transplants than non-Natives. � � Americans. I support organ donation. � It is possible for a brain-dead person to recover from their injuries. � 7
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