Ojibwe American Indians Lived Experience with Transplantation Misty Wilkie-Condiff, PhD, RN Bemidji State University

Presentation Objectives Summarize statistics explaining why American Indians require kidney transplants Describe one challenge with the transplantation process for Ojibwe American Indians. List two cultural beliefs of Ojibwe American Indians that may affect a decision to donate an organ.

Study Background Phenomenological study Ojibwe participants Purpose of study was to understand the lived experience of American Indian organ donors and recipients

American Indian Statistics More than twice as likely to develop DM compared to any other race in the US 68% increase in DM diagnosis from 1994-2004 in 15-19 year-olds 10-15 times more likely to require dialysis Higher education level = more likely to be a donor or have a signed donor card Religious beliefs not a factor in organ donation decisions

American Indian Statistics 226% more likely to die from diabetes 1,300 on transplant waiting list In 2013, 30 AI were deceased donors Wait longer than any other race for a deceased organ

Ojibwe Organ Donor Challenges Fear of surgery, rejection of organ in recipient, and potential complications Sense of sibling responsibility for organ donation Geographical location and extensive travel time to health care facilities Long waiting periods for IHS and insurance approval

Ojibwe Organ Donor Findings Known to be a giving, helping population Volunteers to donate for sibling despite cultural beliefs Motivation to improve self-health No regrets about decision Desire to share experience with others to encourage organ donation

Pre-Transplantation Challenges for Ojibwe Recipients Feelings of immediate hopelessness with DM diagnosis Family/friends diagnosed Frequent exposure to amputations and other complications Geographical location to dialysis centers and health care facilities Eliminating traditional foods from diet Longest wait of any racial or ethnic minority population between initiation of renal dialysis and receipt of deceased donor kidney transplant. (Hall, Choi, Xu, O’Hare, & Chertow, 2011) AI experience significant socioeconomic barriers including poverty, rural residence, and lack of health insurance to accessing the nat’l transplant waiting list

Pre-Transplantation Challenges for Ojibwes Relying on traditional medicine/cultural practices Spiritual beliefs Medicine men Traditional medicine Traditional ceremonies

Post-Transplantation Findings for Ojibwes New growth of hair Second chance at life, renewed energy Focused on positive, healthy changes

Post-Transplantation Challenges for Ojibwes Physical changes Personality changes Weight gain Incorporating medication regimen into daily life

Post-Transplantation Challenges for Ojibwes Desire to stay spiritually connected Accepting reality Waiting for organ rejection & death

Ojibwe Cultural Beliefs Affecting Organ Donation More likely to be a living organ donor Need for body to remain whole Traditional ceremonies to make organ donation spiritually acceptable Recognition of diabetic crisis in communities

American Indian Cultural Beliefs Affecting Organ Donation Cleansing ceremonies to make living organ donation more culturally acceptable Family must be aware of decision to be deceased organ donor Being a deceased donor isn’t likely due to unknown recipient Becoming a living donor is more likely

Summary Challenges with geographical location Living organ donation is increasing Community education and communication needed to increase deceased organ donation Traditional healers support organ donation

Questions? Contact Information: Misty Wilkie-Condiff, PhD, RN mcondiff@bemidjistate.edu