Presentation on theme: "CDC PRAMS National Meeting Atlanta, GA December 9, 2008"— Presentation transcript:
1South Dakota Tribal PRAMS: Using Alternative Methods to Reduce Barriers to PRAMS Participation CDC PRAMS National MeetingAtlanta, GADecember 9, 2008Thank you for the opportunity to discuss the alternative methods we implemented to reduce barriers to PRAMS participation.We hope that our approaches prompt discussion among partners here.Acknowledge JI and SW, who is in China.Christine Rinki, MPH; Jennifer Irving, MPH; Ssu Weng, MD, MPH
2Statements of NeedSDAI 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.SD Tribal PRAMS has been undertaken to address three critical needs: (read slide).These challenges are not unique to SD tribes.
3Low AI PRAMS response rates, 2000-2002 Average response rate AI 63% vs. White 82%AK, OK, WA have achieved 70% minimumMN, MT, NE, NM, ND, OR, UT have not reached 70%PRAMS data have not fully benefited tribesor AI communities.Response rates for AI have been historically low.CDC analysis showed states with high AI pop do not meet 70% minimum and tribes do not benefit.Low response = low contact, not high refusal.Developed alternative methods rooted in CBPR to address concerns, challenges, opportunities.Other states don’t tune out, I believe that what we found can be translated to other rural populations, and even poor urban populations with poor access to postal and landline services.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):
4South Dakota Tribal PRAMS: A Statewide, American Indian, Point-in-Time Project Statewide project focusing on mothers of AI infants, point-in-time, entering our final six months of CDC funding.Yankton Sioux tribe is the lead.NPTEC MCH EPI dept was contracted to implement operations.
5SD Tribal PRAMS Collaboration Standing Rock Sioux TribeCheyenne River Sioux TribeOglala Sioux TribeRosebud Sioux TribeLower Brule Sioux TribeCrow Creek Sioux TribeFlandreau Santee TribeSisseton-Wahpeton OyateAberdeen Area Indian Health ServiceAberdeen, SDSouth Dakota DOHPierre, SDNorthern Plains TribalEpidemiology CenterRapid City, SDYankton Sioux TribeReservation landOther key entities (approximation)Sioux Falls, SDNorth Dakota DOHBismarck, NDVital RecordsVital Records, Epi, WICThis map shows the location of participating entities, including nine tribes.The grant recipient is the Yankton Sioux Tribe.NPTEC manages project operations.SD and ND departments of health provide access to vital records and epi supportOf course, tribes retain authority to authorize implementation of PRAMS through tribal approval processes. Resolutions for PRAMS have been obtained from all SD tribes. Tribes also participate in a Tribal Oversight Committee.Project ManagementGrant Recipient380 miles
6Tribal Oversight Committee & Steering Committee TOC: Decision making bodyRepresentation from all 9 SD TribesSC: Provided guidance, expertiseSD VR and EpiIHS, Urban Indian HealthNorthern Plains Healthy StartMCH Programs (Tribal and State)Oversight is essential to any tribal project.TOC decides policies and protocolSC provides guidance and input.
7Sample: Meeting Tribal Needs Unique NeedProtocol ModificationTribe-specific and statewide reportsStatewide census vs. sampleAllows flexibility for small group analysisIncludes reservation, off-res, urbanAll AI infants must be includedDefine AI by maternal / paternal race on BCBorder reservation deliveries in neighboring statesInclude NE, ND occurrence births to SD residentsOne tribe has land inSD and NDDevelop NDVR agreement to sample 1 ND countyTribal input was central to developing the sampling scheme for this project.A key message that I heard is that while state-level reporting serves a purpose, tribes are concerned about what’s happening within their nation and jurisdiction. Tribes want tribe-specific reports of data.In order to address the need _________________ SDT PRAMS has _________________________.
8The Data Collection Challenge ChallengesLong distances from home to post officeDirt roads, no gas money, no vehiclePoor telephone coverage, cell phonesHighly mobile, circular migration to citiesSuspicion of data collection activitiesNo access to state databasesOpportunitiesDense social and familial networksHigh level of social program participationHealthy Start is a trusted program with strong community contacts and knowledgeEarly and ongoing consultation with tribes and stakeholders.Highlighted challenges:Identified strengths that could facilitate contact with mobile or isolated women.Developed adaptations:-successful and within budget-potential for replication by other PRAMS state-rejected face-to-face interviewing. Our tribes wanted to help other tribes.
9Mailing Operations: Adapting to Community Context Standard MailSD Tribal MailPreletter: postal mailMail 1: postalM1: postalTickler: postal(NA)Address verification to TFSMail 2: postalM2: 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)After I provide this overview of mailing operations, then describe our modifications in more detail. Results will follow.Standard protocol mail data collection steps down the left side of the slide, with corresponding Tribal mail data collection steps down the right. Changes are noted in red.Pre, m1, tickler—same as standard, on the advised timelineAfter tickler, send a worksheet to tribal field staff to verify our mail, physical, and phone contact info, this is not part of the standard protocol.At m2, all non responders received postal survey. Moms enrolled in wic also received a questionnaire with their wic check.We chose m3, and moms living off res receive standard m3 questionnaire mailing. Moms living on res received a hand delivered questionnaire. We found that many had a completed questionnaire at home. In those cases, TFS just picked up the completed previous q.This slide compares standard protocol to SD Tribal protocol for mailing operations.Only adapted protocol for the mail mode.While I think our orientation to data collection marks a dramatic shift towards community engagement compared to the standard, I would argue that the substantive modifications to the methods are minor.
10Mailing Operations: Adapting to Community Context Standard MailSD Tribal MailPreletter: postal mailMail 1: postalM1: postalTickler: postalNAAddress verification to TFSMail 2: postalM2: 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)Now will describe our Mail 2 WIC modifications in more detail.Tribal PRAMS developed the WIC partnership because 75% of our sample receives WIC during pregnancy, and women continue contact with WIC despite frequent moves.
11SD WIC Partnership WIC enrollment on BC Confirmed enrollment status and location with SDDOH WICMailed out questionnaires to WIC officesQuestionnaires delivered at appointments by WIC clinical staffBi-monthly appointments = contact lag timeTelephone info collected by WIC staffReturn telephone info and tracking dataSo what did this partnership look like in practice?WIC a state-specific variable.Entered telephone info into database external to PT.
12Mailing Operations: Adapting to Community Context Standard MailSD Tribal MailPreletter: postal mailMail 1: postalM1: postalTickler: postalNAAddress verification to TFSMail 2: postalM2: 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)So now let’s talk about the mail 3 modifications.
13Tribal Field Staff Partnership Activities 8 hour training Northern Plains Healthy StartTribal Health AdministrationActivitiesPromote PRAMS on their reservationsVerify address and phone informationHand deliver & pick up questionnaires8 hour trainingCDC PRAMS Human Subjects ProtectionInteractive: role play, brainstormingTribal Field Staff Protocol & ManualCornerstone of this effort was partnership with Tribal Field Staff. I cannot say enough about the work that these women do.Provided $$ to NPHS for staff time, large reservations .5 FTE, small .2 FTE.Not only data collection activities, but strengthening connection with tribes.Manual as part of our exhibits.
14Hand Delivery ProcessReservation residence determined by mother’s county of residence on BCContact verification worksheets completed by field staff, entered into PRAMTracQuestionnaires and tracking documentation mailed to field staff3 delivery attempts, scripted protocol to protect confidentialityPick up of completed questionnairesAdditional contact verificationReturned tracking data to PRAMS officeCounty is imported to pt.Q
15Additional Activities Use of Lakota / Dakota language and concepts in promotional and questionnaire materialsIncentives / rewards30 minute phone cardCD of Lakota / Dakota Honor Songs$100 monthly drawing$10 cash reward (not CDC funds)Extensive promotional plan not fully implementedAdditionally, we tailored project materials to demonstrate our commitment to AI families across SD.
17SDT PRAMS Results Number sampled Respondents Response rate Overall 130094872.9%Maternal Education0-11 years46832469.2%12 years39028573.1%> 12 years42933177.2%Age< 2030321771.6%20-2977756172.2%30+21817078.0%ParityNo previous live births41831374.9%1+ previous live births88263572.0%In this first slide we see the overall demographics of our sample and respondents, as well as response rates for each group. As a reminder, we did a census of eligible women.Overall response rateResponse strong across all groupsOur sample is fairly young, with a large group who have low educational attainment.As expected, older and more educated women have higher response rates.
18SDT PRAMS Results (con’t) Number sampledRespondentsResponse rateMaternal Race / EthnicityWhite Non-Hispanic1187664.4%Hispanic553054.4%American Indian102076474.9%Other1067772.6%As you recall, we included mothers of AI infants, some mothers are not AI. We saw a lower response among this group.Complicated identity, cultural and political factors at play, but also all materials strongly resonant with Lakota and Dakota communities.
19Overall response by mode Data Collection StepNumber IncludedNumber ofRespondentsResponse RateMail 1127852940.7%Mail 2—Postal84513610.5%Mail 2—WIC443463.5%Mail 3—Postal269342.6%Mail 3—Hand412655.0%Other MailingNA30.2%Phone Phase62713510.4%Total129994872.9%For each data collection step down the left of the slide, we see the number who were sent or delivered that mailing, the number who responded in that mode, and the percentage of the overall sample who completed the survey in that mode. So for mail 1, 529 responded, which is 40.7% of For phone phase, this was the number that were forwarded into phone phase.In all of our operations analyses, our total is 1299 because 1 woman died during data collection and we removed her from these analyses, though she remained in the sample.You can see that we had about 30% of our sample in each the Mail 2 WIC and Mail 3 Hand Delivery modifications. About 8.5% of women completed the survey in these modes.But this doesn’t really tell the whole story of the impact of these modifications on response.
20Modifications Results Response by group NumberEligibleCompletedResponse RateMail 2M2-Postal only46727358.5%M2-WIC44331771.6%*Mail 3M3-Postal26910037.2%M3-Hand Delivery41225662.1%*First we’ll look at the Mail 2 delivery.For this analysis, we compared women who were sent a mail 2 questionnaire through the mail ONLY to women who received a mail 2 through WIC and through the mail.Women in the M2 WIC group, were significantly more likely to complete the questionnaire than women in the standard protocol group for mail 2.M2-Postal only = 36%; M2-WIC = 34%M3 Postal = 21%; M3 Hand Delivery = 31.7%, or no WIC record for mother.* p<.05response rate significantly higher in both modification groups
21WIC Delivery Results Mode of completion by group M2-PostalM2- WICMail 119.3%23.3%Mail 2—Postal16.3%13.5%Mail 2—WICNA10.4%Mail 3—Postal2.8%4.7%Mail 3—Hand8.8%Other Mailing0.2%0.5%Phone Phase11.1%14.4%Total58.5%71.6%Here we have a side by side comparison of response for the standard mail 2 postal only and the mail 2 WIC modfication group. This slide shows us where exactly the higher response rate for M2 WIC comes from.There appears to be a higher response across nearly all data collection steps for the WIC group than for the standard group, with the exception of the standard m2 postal mailing and also Mail 3 hand delivery.
22WIC Delivery Results Process steps Number% of eligible women% of total sampleQuestionnaireContacted by WIC26760.3%20.5%Questionnaire Delivered19243.3%14.7%Telephone InformationTelephone info provided20646.5%15.8%Tracking DataNot documented9521.4%7.3%So what happened exactly?There was a documented WIC contact among 60% of WIC eligible women, which is 20% of the overall sample.Documented questionnaire delivery among 43% of wic eligible women, nearly 15% of the overall sample.Telephone information was received for 47% of eligible women, 16% of the sample.We did not receive tracking documentation back from wic for nearly 20% of wic eligible women.Questionnaires may not be delivered because women declined an additional survey—reported that it was already completed or had them at home already and didn’t need another one.
23WIC Costs WIC cost per additional response = $20 Budget Item Cost Duplicate questionnaire packets$655Mailings to WIC sites$340Mailings from WIC to PRAMS$170Staff time (not estimated)$0Total Cost$1,165This slide outlines the cost of this modification.Overall cost was 1,165.Cost of each additional response above the standard protocol response rate was $20.Very cost effective.WIC cost per additional response = $20
24Hand Delivery Results M3 eligible women by mode Mode of completionM3-PostalM3-Hand DeliveryMail 15.2%10.7%Mail 2—Postal3.7%10.4%Mail 2—WIC4.8%4.9%Mail 3—Postal12.6%NAMail 3—HD15.8%Other Mailing0.4%0.2%Phone Phase20.1%Total37.1%62.1%We saw a similar slide for wic a minute ago.This side-by-side comparison of the mail 3 groups shows where the higher response for HD comes from. Much higher across all modes.We attribute the 10% higher phone response to better phone contacts and promotion of the 800 number and phone interview among HD group.We attribute the higher mail 1 and mail 2 postal to questionnaire pick ups when staff initially arrived at participant’s homes.
25Hand Delivery Process Data Delivery or primary pick up Successful contactnumber% of eligible women% of total sampleQ delivered15236.9%11.7%Q delivered/picked up17241.7%13.2%This slide shows that a q was delivered to 37% of women in the hand delivery group, about 12% of the sample.The next row shows that 42% of the hd group either received a q or provided a completed questionnaire to the tfs at delivery.
26Hand Delivery Process Data Questionnaire pick up Pick up modenumber% eligible women% of total samplePick up at initial contact4410.7%3.4%Pick up after delivery204.9%1.5%Total Q picked up6415.5%Overall Tribal Field staff picked up completed questionnaires for about 16% of the hd group.This activity alone contributed nearly 5% of the overall response rate.
27Hand Delivery Process Data New contact information collectedType ofinformationNumber% of eligible women% of total sampleNew address276.6%2.1%New telephone12029.1%9.2%No new contact28569.2%21.9%We also received new contact information.I’ll refer to the far right of the slide—We received new telephone numbers for 29% of hd group, or 9.2% of the overall sample.
28Contact Verification (after tickler) New Information CollectedNumber% eligible women% of total sampleAddressMailing376.9%2.8%Physical509.3%3.8%PhoneNew phone25747.7%19.8%Whose phone info:Participant20738.4%15.9%Father / partner132.4%1.0%Relative427.8%3.2%Friend101.9%0.8%
29Hand Delivery Costs HD cost per additional response = $383 Budget Item Mailings to Tribal Field Sites$286Mailings from TFS to PRAMS$240TFS personnel$53,200Mileage$2,385Training (estimated)$3000Postage savings($478)Total Cost$58,633Hand delivery is obviously a more expensive endeavor than the WIC partnership. The overall cost was nearly $60,000, and cost per additional response was $383.We believe, though, that the results of this partnership extend beyond response rates to supporting data translation efforts.HD cost per additional response = $383
30Factors in successObtained contact informationOvercame mail and telephone barriers to contact & Q returnIncreased motivationEncouragement from trusted providersCulturally relevant materialsDesirable rewards
31Next StepsPrepare 9 tribe-specific, 1 statewide, and 4 issue-specific reportsProvide data use training for tribesDevelop maternal and infant health task force to use findings to develop new program and policy initiativesWork with elders and traditional leaders to interpret and communicate findings / develop recommendations
32Conclusions Protocol modifications were successful and replicable Community-responsive adaptations could be applied to other groupsCBPR approaches improve PRAMS awareness and demand among stakeholdersTribes and TECs can lead efforts to improve AI/AN MCH surveillance
33Contact Acknowledgements Christine Rinki, MPH Northern Plains Tribal MCH Epidemiology ProgramAcknowledgementsSDT PRAMS StaffSsu Weng; Jennifer Irving; Lynn Big Eagle; TFS Team/Northern Plains Healthy StartSDT PRAMS ParticipantsYankton Sioux TribeChairman Robert Cournoyer, Glenn Drapeau, Clarence MontgomeryParticipating Tribes and Tribal Oversight CommitteeSDT PRAMS Steering CommitteeSouth Dakota Department of HealthJacy Clarke, Kayla Tinker, Kathi Mueller, Anthony NelsonEverett PutnamNorth Dakota Department of HealthCarmell BarthCDC PRAMSDenise D’Angelo, Mary RogersFunding sourcesIHS MCH Epidemiology Grant #H1 U IHSCDC Cooperative Agreement #1 UR6 DP /02