“Through it all, I kept my Changes in Stage of Readiness After Exposure to "Sharing the Gift of Life" “Through it all, I kept my faith in Lakota.” 135th Annual Meeting of the American Public Health Assoc. November, 2007 Nancy L. Fahrenwald Funding source: Associate Professor HRSA, DOT R390T01211 South Dakota State University 1 of 15 1

Exec. Dir., SD Lion’s Eye Bank Arliss Keckler Christine Belitz, BS Exec. Dir., SD Lion’s Eye Bank Arliss Keckler Tribal Outreach Specialist SD Lion’s Eye Bank Manoj Sharma, MBBS, PhD Associate Professor, Health Prom. & Ed. U. of Cincinnati Woope Claymore, age 16 Cheyenne River Lakota Sioux Tribe

Kidney Transplant Recipient Background : For American Indians & Alaska Natives (AI/AN) there is a dire need for kidney transplantation. Consent rates for donation among AI/AN people are low. Few donation outreach interventions designed for AI/AN people. No known empirical tests of interventions. Kidney Transplant Recipient

“If you give, you get back tenfold.” Purpose: To test a theory-based intervention for organ and tissue donation among reservation dwelling AI adults . “If you give, you get back tenfold.” Specific Aim: To determine whether the intervention produced changes in intention to serve as an organ or tissue donor.

Donated his kidney to his father. Methods: community-based quasi-experimental pre/post-test design Setting/participants: 4 Northern Plains reservations: All participants adults were adults (N=1850, 58% women). Snowball sampling technique. Donated his kidney to his father.

SD Indian Reservations, Trust Lands, and Tribal Headquarters 73 14 90 240 44 18 75 65 63 20 79 168 34 53 49 47 273 1806 45 26 251 50 1804 37 25 22 27 10 127 15 158 101 139 30 324 13 32 19 11 38 271 253 239 14A 385 16 16A 71 471 87 407 391 40 89 85 212 12 83 183 281 42 115 46 52 48 262 36 Sturgis Deadwood Rapid City Buffalo Bison Timber Lake Dupree Pierre Selby McIntosh Philip Ft. Pierre Murdo Martin Springs Hot Custer White River Winner Kennebec Chamberlain Ipswich Aberdeen Leola Britton Webster Sisseton Milbank Watertown Lake Clear Hayti Clark Redfield Miller Highmore Huron Plankinton Wessington Woonsocket DeSmet Brookings Flandreau Salem Howard Sioux Falls Canton Parker Armour Alexandria Yankton Vermillion Olivet Elk Point Onida Gettysburg Faulkton Mound City Tyndall Burke Belle Fourche Lake Andes 144 43 247 134 224 Gann Valley Mitchell 29 Madison 81 28 123 17 Lawrence Standing Rock Cheyenne River Rosebud Pine Ridge Lower Brule Crow Creek Tribal Headquarters Agency Ft. Thompson Eagle Butte Marty Ft. Yates, ND Sisseton Yankton Reservation Sites: Pine Ridge, Rosebud, Cheyenne River, Sisseton Wahpeton

Cheyenne River Lakota Sioux Tribe Theoretical Framework Cultural context: Story-telling & Gift giving Transtheoretical Model: Stages of readiness Self-efficacy Pros/Cons Processes of Change Gary Bad Warrior, Jr. Cheyenne River Lakota Sioux Tribe

Behavioral Intervention: “Wakic' unpi Wiconi” “Sharing the Gift of Life” Modeled after MOTTEP Strategies Culturally-tailored print materials, video & social marketing strategies Promote organ/tissue donation at community gatherings, worksites, churches, pow-wow’s & other events Educational programs for community groups and post-secondary education programs

Cornea Transplant Recipient, Christine Janis, Oglala Lakota Tribe Measures: Pre/post stage of readiness to become an organ or tissue donor # of donor cards signed coupled with verification of family notification Driver’s license designation as an organ donor # of target population donor referrals and donors “The giving of oneself is just the ultimate way of saying thank you for being created.” Cornea Transplant Recipient, Christine Janis, Oglala Lakota Tribe

Data Analysis Aim 1: Change in Donor Intent McNemar's test of significance for dependent samples compare pre- and post-intervention stage of motivational readiness. participants categorized as stage non-progressed or stage progressed (progressed one or more stages)

RESULTS Aim 1: Changes in Donor Intent* 43% (n= 681) no change; 57% (n=899) progressed in stage of change, 0 regressed in stage. Change in donor intent from pre- to post-intervention was significant, χ2 (1) = 18.32, p <.05*

Donor Designation: Preparation or Action Stage of Change

Limitations Single-group design No demographic data collected Paul High Elk, Double Cornea Transplant Recipient, 1959 & 1968 Cheyenne River , Lakota Sioux Tribe Limitations Single-group design No demographic data collected Verification of family notification is problematic Time required for community-based participatory research Sisseton - Wahpeton Oyate Tribe 15

Recommendations and Needs for Further Research: Measurement issues Collect demographic data Hire outreach people from each tribe Target a younger adult population Critical need for more intervention research www.lakotasharinglife.org Wakic' unpi Wiconi - Sharing the Gift of Life - Wakic' unpi Wiconi - Sharing the Gift of Life - Wakic' unpi Wiconi - Sharing the Gift of