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

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 MeetingAtlanta, GA

December 9, 2008

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.

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.

South Dakota Tribal PRAMS: A Statewide, American Indian,

Point-in-Time Project

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 ServiceAberdeen, SD

South Dakota DOHPierre, SDNorthern Plains Tribal

Epidemiology CenterRapid City, SD

Yankton Sioux TribeReservation land Other key entities (approximation)

Sioux Falls, SD

North Dakota DOHBismarck, NDVital

Records

Vital Records, Epi, WIC

Grant Recipient

Project Management

380 miles

SD Tribal PRAMS Collaboration

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)

Sample: Meeting Tribal Needs

Unique Need Protocol ModificationTribe-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 inSD and ND

Develop NDVR agreement to sample 1 ND county

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

Mailing Operations:Adapting to Community Context

Standard Mail SD 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)






NA Address verification to TFS




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






NA Address verification to TFS




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

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

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

Results

SDT PRAMS ResultsNumber sampled

Respondents Response rate

Overall 1300 948 72.9%

Maternal Education

0-11 years 468 324 69.2%

12 years 390 285 73.1%

> 12 years 429 331 77.2%

Age

< 20 303 217 71.6%

20-29 777 561 72.2%

30+ 218 170 78.0%

Parity

No previous live births 418 313 74.9%

1+ previous live births 882 635 72.0%

SDT PRAMS Results (con’t)

Number sampled

Respondents Response rate

Maternal Race / Ethnicity

White Non-Hispanic 118 76 64.4%

Hispanic 55 30 54.4%

American Indian 1020 764 74.9%

Other 106 77 72.6%

Overall response by mode

Data Collection StepNumber Included

Number ofRespondents

Response Rate

Mail 1 1278 529 40.7%

Mail 2—Postal 845 136 10.5%

Mail 2—WIC 443 46 3.5%

Mail 3—Postal 269 34 2.6%

Mail 3—Hand 412 65 5.0%

Other Mailing NA 3 0.2%

Phone Phase 627 135 10.4%

Total 1299 948 72.9%

Modifications ResultsResponse by group

GroupNumberEligible

NumberCompleted

Response Rate

Mail 2M2-Postal only 467 273 58.5%

M2-WIC 443 317 71.6%*

Mail 3

M3-Postal 269 100 37.2%

M3-Hand Delivery 412 256 62.1%*

* p<.05

response rate significantly higher in both modification groups

WIC Delivery ResultsMode of completion by group

Mode of completion M2-Postal M2- WIC

Mail 1 19.3% 23.3%

Mail 2—Postal 16.3% 13.5%

Mail 2—WIC NA 10.4%


Mail 3—Hand 8.8% 4.7%

Other Mailing 0.2% 0.5%

Phone Phase 11.1% 14.4%

Total 58.5% 71.6%

WIC Delivery ResultsProcess steps

Process Step Number

% of eligible women

% of total sample

Questionnaire

Contacted by WIC 267 60.3% 20.5%

Questionnaire Delivered 192 43.3% 14.7%

Telephone Information

Telephone info provided 206 46.5% 15.8%

Tracking Data

Not documented 95 21.4% 7.3%

WIC Costs

Budget Item CostDuplicate 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

Hand Delivery ResultsM3 eligible women by mode

Mode of completion M3-Postal

M3-Hand Delivery

Mail 1 5.2% 10.7%


Mail 2—WIC 4.8% 4.9%

Mail 3—Postal 12.6% NA

Mail 3—HD NA 15.8%

Other Mailing 0.4% 0.2%

Phone Phase 10.4% 20.1%

Total 37.1% 62.1%

Hand Delivery Process DataDelivery or primary pick up

Successful contact number

% of eligible women

% of total sample

Q delivered 152 36.9% 11.7%

Q delivered/picked up 172 41.7% 13.2%

Hand Delivery Process Data Questionnaire pick up

Pick up mode number% eligible women

% of total sample

Pick up at initial contact 44 10.7% 3.4%

Pick up after delivery 20 4.9% 1.5%

Total Q picked up 64 15.5% 4.9%

Hand Delivery Process Data New contact information collected

Type of information Number

% of eligible women

% of total sample

New address 27 6.6% 2.1%

New telephone 120 29.1% 9.2%

No new contact 285 69.2% 21.9%

Contact Verification(after tickler)

New Information Collected Number

% eligible women

% of total sample

Address

Mailing 37 6.9% 2.8%

Physical 50 9.3% 3.8%

Phone

New phone 257 47.7% 19.8%

Whose phone info:

Participant 207 38.4% 15.9%

Father / partner 13 2.4% 1.0%

Relative 42 7.8% 3.2%

Friend 10 1.9% 0.8%

Hand Delivery Costs

Budget Item CostMailings 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

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

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

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

ContactChristine Rinki, MPHNorthern Plains Tribal MCH Epidemiology [email protected]

AcknowledgementsSDT PRAMS Staff

Ssu Weng; Jennifer Irving; Lynn Big Eagle; TFS Team/Northern Plains Healthy Start

SDT PRAMS ParticipantsYankton Sioux Tribe

Chairman Robert Cournoyer, Glenn Drapeau, Clarence MontgomeryParticipating Tribes and Tribal Oversight CommitteeSDT PRAMS Steering CommitteeSouth Dakota Department of Health

Jacy Clarke, Kayla Tinker, Kathi Mueller, Anthony NelsonEverett Putnam

North Dakota Department of HealthCarmell Barth

CDC PRAMSDenise D’Angelo, Mary Rogers

Funding sourcesIHS MCH Epidemiology Grant #H1 U IHS300167-01 CDC Cooperative Agreement #1 UR6 DP000466-01/02

mailto:[email protected]

Documents

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