south dakota tribal prams: using alternative methods to reduce barriers to prams participation...
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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, 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)
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)
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
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)
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—Postal 2.8% 4.7%
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—Postal 3.7% 10.4%
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