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South Dakota Tribal PRAMS: Using Alternative Methods to Reduce Barriers to PRAMS Participation Christine Rinki, MPH; Jennifer Irving, MPH; Ssu Weng, MD,

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Presentation on theme: "South Dakota Tribal PRAMS: Using Alternative Methods to Reduce Barriers to PRAMS Participation Christine Rinki, MPH; Jennifer Irving, MPH; Ssu Weng, MD,"— Presentation transcript:

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

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

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 Unique NeedProtocol Modification Tribe-specific and statewide reports Statewide census vs. sample Allows flexibility for small group analysis Includes reservation, off-res, urban All AI infants must be included Define AI by maternal / paternal race on BC Border reservation deliveries in neighboring states Include NE, ND occurrence births to SD residents One tribe has land in SD and ND Develop NDVR agreement to sample 1 ND county

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 Standard MailSD Tribal Mail Preletter: postal mail Preletter: postal mail Mail 1: postal M1: postal Tickler: postal Tickler: postal (NA) Address verification to TFS Mail 2: postal M2: postal (all non-responders) M2: with WIC (WIC participants only) Mail 3: postal (optional) M3: postal (non-reservation residents) M3: hand delivered or hand pick-up (reservation residents)

10 Mailing Operations: Adapting to Community Context Standard MailSD Tribal Mail Preletter: postal mail Preletter: postal mail Mail 1: postal M1: postal Tickler: postal Tickler: postal NA Address verification to TFS Mail 2: postal M2: postal (all non-responders) M2: with WIC (WIC participants only) Mail 3: postal (optional) M3: postal (non-reservation residents) M3: hand delivered or hand pick-up (reservation residents)

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 Standard MailSD Tribal Mail Preletter: postal mail Preletter: postal mail Mail 1: postal M1: postal Tickler: postal Tickler: postal NA Address verification to TFS Mail 2: postal M2: postal (all non-responders) M2: with WIC (WIC participants only) Mail 3: postal (optional) M3: postal (non-reservation residents) M3: hand delivered or hand pick-up (reservation residents)

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 mothers 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 Number sampled RespondentsResponse rate Overall130094872.9% Maternal Education 0-11 years46832469.2% 12 years39028573.1% > 12 years42933177.2% Age < 2030321771.6% 20-2977756172.2% 30+21817078.0% Parity No previous live births41831374.9% 1+ previous live births88263572.0%

18 SDT PRAMS Results (cont) Number sampled RespondentsResponse rate Maternal Race / Ethnicity White Non-Hispanic1187664.4% Hispanic553054.4% American Indian102076474.9% Other1067772.6%

19 Overall response by mode Data Collection Step Number Included Number of Respondents Response Rate Mail 1127852940.7% Mail 2Postal 84513610.5% Mail 2WIC 443 46 3.5% Mail 3Postal 269 34 2.6% Mail 3Hand 412 65 5.0% Other Mailing NA 3 0.2% Phone Phase 62713510.4% Total129994872.9%

20 Modifications Results Response by group Group Number Eligible Number Completed Response Rate Mail 2 M2-Postal only46727358.5% M2-WIC44331771.6% * Mail 3 M3-Postal26910037.2% M3- Hand Delivery 41225662.1% * * p<.05 response rate significantly higher in both modification groups

21 WIC Delivery Results Mode of completion by group Mode of completionM2-PostalM2- WIC Mail 119.3%23.3% Mail 2Postal16.3%13.5% Mail 2WICNA10.4% Mail 3Postal2.8%4.7% Mail 3Hand8.8%4.7% Other Mailing0.2%0.5% Phone Phase11.1%14.4% Total58.5%71.6%

22 WIC Delivery Results Process steps Process Step Number % of eligible women % of total sample Questionnaire Contacted by WIC26760.3%20.5% Questionnaire Delivered19243.3%14.7% Telephone Information Telephone info provided20646.5%15.8% Tracking Data Not documented9521.4%7.3%

23 WIC Costs Budget ItemCost Duplicate questionnaire packets$655 Mailings to WIC sites$340 Mailings from WIC to PRAMS$170 Staff time (not estimated)$0 Total Cost$1,165 WIC cost per additional response = $20

24 Hand Delivery Results M3 eligible women by mode Mode of completion M3-Postal M3-Hand Delivery Mail 1 5.2%10.7% Mail 2Postal 3.7%10.4% Mail 2WIC 4.8%4.9% Mail 3Postal 12.6%NA Mail 3HD NA15.8% Other Mailing 0.4%0.2% Phone Phase 10.4%20.1% Total 37.1%62.1%

25 Hand Delivery Process Data Delivery or primary pick up Successful contactnumber % of eligible women % of total sample Q delivered15236.9%11.7% Q delivered/picked up17241.7%13.2%

26 Hand Delivery Process Data Questionnaire pick up Pick up modenumber % eligible women % of total sample Pick up at initial contact4410.7%3.4% Pick up after delivery204.9%1.5% Total Q picked up6415.5%4.9%

27 Hand Delivery Process Data New contact information collected Type of informationNumber % of eligible women % of total sample New address276.6%2.1% New telephone12029.1%9.2% No new contact28569.2%21.9%

28 Contact Verification (after tickler) New Information CollectedNumber % eligible women % of total sample Address Mailing376.9%2.8% Physical509.3%3.8% Phone New phone25747.7%19.8% Whose phone info: Participant20738.4%15.9% Father / partner132.4%1.0% Relative427.8%3.2% Friend101.9%0.8%

29 Hand Delivery Costs Budget ItemCost Mailings to Tribal Field Sites$286 Mailings from TFS to PRAMS$240 TFS personnel$53,200 Mileage$2,385 Training (estimated)$3000 Postage savings($478) Total Cost$58,633 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 DAngelo, Mary Rogers Funding sources IHS MCH Epidemiology Grant #H1 U IHS300167-01 CDC Cooperative Agreement #1 UR6 DP000466-01/02


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