South Dakota Tribal PRAMS: Using Alternative Methods to Reduce Barriers to PRAMS Participation

1. South Dakota Tribal PRAMS: Using Alternative Methods to Reduce Barriers to PRAMS Participation CDC PRAMS National Meeting Atlanta, GA December 9, 2008 Christine Rinki, MPH; Jennifer Irving, MPH; Ssu Weng, MD, MPH

2. Statements of Need • SDAI communities experience persistent and dramatic disparities in infant mortality, post-neonatal mortality. • Tribes do not have timely access to accurate, population-based maternal / infant health data. • No statewide maternal / infant AI data to supplement vital statistics.

3. Low AI PRAMS response rates, 2000-2002 • Average response rate AI 63% vs. White 82% • AK, OK, WA have achieved 70% minimum • MN, MT, NE, NM, ND, OR, UT have not reached 70% PRAMS data have not fully benefited tribes or AI communities. Kim SY, Tucker M, Danielson M, Johnson CH, Snesrud P, Shulman H. (2008). How can PRAMS Survey Response Rates be Improved Among American Indian Mothers? Data from 10 States. Matern Child Health J, 12(Supp 1):119-125.

4. South Dakota Tribal PRAMS: A Statewide, American Indian,Point-in-Time Project

5. North Dakota DOH Bismarck, ND Sisseton-Wahpeton Oyate Standing Rock Sioux Tribe Aberdeen Area Indian Health Service Aberdeen, SD Cheyenne River Sioux Tribe South Dakota DOH Pierre, SD Northern Plains Tribal Epidemiology Center Rapid City, SD Lower Brule Sioux Tribe Flandreau Santee Tribe Crow Creek Sioux Tribe Oglala Sioux Tribe Sioux Falls, SD Rosebud Sioux Tribe Yankton Sioux Tribe Reservation land Other key entities (approximation) SD Tribal PRAMS Collaboration Vital Records Vital Records, Epi, WIC Project Management Grant Recipient 380 miles

6. Tribal Oversight Committee & Steering Committee TOC: Decision making body • Representation from all 9 SD Tribes SC: Provided guidance, expertise • SD VR and Epi • IHS, Urban Indian Health • Northern Plains Healthy Start • MCH Programs (Tribal and State)

7. Sample: Meeting Tribal Needs

8. The Data Collection Challenge Challenges • Long distances from home to post office • Dirt roads, no gas money, no vehicle • Poor telephone coverage, cell phones • Highly mobile, circular migration to cities • Suspicion of data collection activities • No access to state databases Opportunities • Dense social and familial networks • High level of social program participation • Healthy Start is a trusted program with strong community contacts and knowledge

9. Mailing Operations:Adapting to Community Context

10. Mailing Operations:Adapting to Community Context

11. SD WIC Partnership • WIC enrollment on BC • Confirmed enrollment status and location with SDDOH WIC • Mailed out questionnaires to WIC offices • Questionnaires delivered at appointments by WIC clinical staff • Bi-monthly appointments = contact lag time • Telephone info collected by WIC staff • Return telephone info and tracking data

12. Mailing Operations:Adapting to Community Context

13. Tribal Field Staff • Partnership • Northern Plains Healthy Start • Tribal Health Administration • Activities • Promote PRAMS on their reservations • Verify address and phone information • Hand deliver & pick up questionnaires • 8 hour training • CDC PRAMS Human Subjects Protection • Interactive: role play, brainstorming • Tribal Field Staff Protocol & Manual

14. Hand Delivery Process • Reservation residence determined by mother’s county of residence on BC • Contact verification worksheets completed by field staff, entered into PRAMTrac • Questionnaires and tracking documentation mailed to field staff • 3 delivery attempts, scripted protocol to protect confidentiality • Pick up of completed questionnaires • Additional contact verification • Returned tracking data to PRAMS office

15. Additional Activities • Use of Lakota / Dakota language and concepts in promotional and questionnaire materials • Incentives / rewards • 30 minute phone card • CD of Lakota / Dakota Honor Songs • $100 monthly drawing • $10 cash reward (not CDC funds) • Extensive promotional plan not fully implemented

16. Results

17. SDT PRAMS Results

18. SDT PRAMS Results (con’t)

19. Overall response by mode

20. Modifications ResultsResponse by group * p<.05 response rate significantly higher in both modification groups

21. WIC Delivery ResultsMode of completion by group

22. WIC Delivery ResultsProcess steps

23. WIC Costs WIC cost per additional response = $20

24. Hand Delivery ResultsM3 eligible womenby mode

25. Hand Delivery Process DataDelivery or primary pick up

26. Hand Delivery Process DataQuestionnaire pick up

27. Hand Delivery Process DataNew contact information collected

28. Contact Verification(after tickler)

29. Hand Delivery Costs HD cost per additional response = $383

30. Factors in success • Obtained contact information • Overcame mail and telephone barriers to contact & Q return • Increased motivation • Encouragement from trusted providers • Culturally relevant materials • Desirable rewards

31. Next Steps • Prepare 9 tribe-specific, 1 statewide, and 4 issue-specific reports • Provide data use training for tribes • Develop maternal and infant health task force to use findings to develop new program and policy initiatives • Work with elders and traditional leaders to interpret and communicate findings / develop recommendations

32. Conclusions • Protocol modifications were successful and replicable • Community-responsive adaptations could be applied to other groups • CBPR approaches improve PRAMS awareness and demand among stakeholders • Tribes and TECs can lead efforts to improve AI/AN MCH surveillance

33. Contact Christine Rinki, MPH Northern Plains Tribal MCH Epidemiology Program 605-441-0320 epirinki@aatchb.org Acknowledgements SDT PRAMS Staff Ssu Weng; Jennifer Irving; Lynn Big Eagle; TFS Team/Northern Plains Healthy Start SDT PRAMS Participants Yankton Sioux Tribe Chairman Robert Cournoyer, Glenn Drapeau, Clarence Montgomery Participating Tribes and Tribal Oversight Committee SDT PRAMS Steering Committee South Dakota Department of Health Jacy Clarke, Kayla Tinker, Kathi Mueller, Anthony Nelson Everett Putnam North Dakota Department of Health Carmell Barth CDC PRAMS Denise D’Angelo, Mary Rogers Funding sources IHS MCH Epidemiology Grant #H1 U IHS300167-01 CDC Cooperative Agreement #1 UR6 DP000466-01/02