Educating African American Mothers on the Importance of Newborn Screening

Transcription

1 Educating African American Mthers n the Imprtance f Newbrn Screening Materials develpment activity funded by Genetic Alliance Prepared by

2 Overview Abut Table fr Tw (TFT) Prject Scpe Theretical Framewrk & Research Design Healthcare Prvider Outreach Patient Advcate Interviews Themes/Key Findings Prduct Develpment Patient Activatin Vide Factsheet Partner Outreach/Disseminatin Recmmendatins Next Steps

3 Abut Table fr Tw Fundatin (TFT) Cmmunity-based rganizatin that leads maternal and child health initiatives, especially thse targeting cmmunities f clr and wrking mthers Natinally recgnized leader in public lactatin rm supprt Signature campaign asks, Yu wuldn t eat in the bathrm, s why wuld yu expect a baby t? Led t develpment (in prgress) f family center and lactatin rm in wrld s largest airprt (Atlanta Hartsfield-Jacksn Internatinal, 2013)

4 Table fr Tw Fundatin Our Cre Team Mnica L. Pnder, MS, MSPH C-Funder, Table fr Tw Health Cmmunicatr/ Cmmunity Advcate Sjurner Marable Grimmett, MA C-Funder, Table fr Tw Mmmy Blgger/ Cmmunity Advcate Karla Scipi, RN, BSN Clinical Nurse Educatr Prgram Manager (Frmer Labr and Delivery Nurse) Nt fr disseminatin. Review brief nly.

5 Table fr Tw Fundatin Our Cre Team We lve supprting the public health and healthcare needs f wmen! Thank yu fr the pprtunity t wrk n such an imprtant issue.

6 Mre n the prject missin f supprting healthy babies Educating African American Mthers n the Imprtance f Newbrn Screening

7 Prject Scpe Infgraphic develped by Genetic Alliance Received special prject funding (April 2013) Develp culturally apprpriate educatinal materials n newbrn screening (NBS) Target African American wmen and families Fcus n health literacy, awareness, disparities, early detectin and preventin Engagement with minrityserving healthcare prviders

8 Theretical Framewrk & Research Design Envirnmental Scan Thery Identificatin Partner Engagement/C-branding Strategies Key Infrmant Interviews Patients/Cnsumers Healthcare Prviders Partner Assessment Thematic Analysis & Message Develpment Prducts Disseminatin Recmmendatins

9 Nt fr disseminatin. Review brief nly. Full citatin list can be prvided

10 Envirnmental Scan Newbrn screening is an established public health prtcl with natinwide mandated testing, labratry reprting and clinical linkages Newbrn screening rles and respnsibilities vary between states imprvements in systems cmmunicatin are needed Strnger linkages needed between clinical testing service and patient primary care prvider r cmmunity-based medical hmes Highlights the unique rle f nursing cmmunity in managing newbrn screening educatin Healthcare prviders shwed dissatisfactin and cnfusin with newbrn screening prcesses The majrity were cncerned that parents may nt receive adequate infrmatin abut their infant s cnditin, treatment, r prgnsis N prvider reprted being cnfident in his r her ability t assess hw well a parent understands a psitive NBS result Serius gaps in patient-prvider cmmunicatin exist

11 Envirnmental Scan Established gaps in system linkages, prvider educatin, and cnsumer engagement and knwledge Level f patient engagement varied by incme and age Fund few studies that assessed knwledge, attitudes r beliefs abut newbrn screening by ethnicity Families with histry f genetic illness were mre likely t be knwledgeable abut newbrn screening prcesses Parents described incnsistency in the timing f and methds used t infrm them abut NBS Assessment f patient educatin materials written at mderate-t-high literacy levels, nt user-friendly, few culturally apprpriate imagery included Regarding genetic disrders, birth defects, and develpmental disabilities, many disparities exist and infant mrtality is high - emphasizes the imprtance f early interventin and educatin fr the AA cmmunity, and strengthening clinical linkages thrughut child develpment

12 Envirnmental Scan Many cmmunities have suspicins regarding medical establishments and are resistant and wary f the health messages, including messages that can assist in saving lives. Fr example, Jhansen et al. (2008) wrte, General mistrust f the medical system by African-Americans is blamed in part fr their lesser willingness t dnate rgans the same mistrust may cntribute t an unwillingness t dnate [umbilical crd bld]. Fr a message t be effective, the intended receiver must believe and trust the message.

13 Theretical Framewrk Situatinal Thery f Publics Helps t predict infrmatin-seeking behavir amng publics The thery has been used theretically and practically t determine if publics use health interventin strategies and hw publics perceive health interventin strategies Leads t understanding the salient identities f thse within the public and acknwledging hw their cultural identities influence their perceptins, realities, and understanding f messages

14 Theretical Framewrk PAPM Stage Unaware f issue Unengaged by issue Deciding abut acting Decided nt t act Acting Maintenance Applicatin t NBS N familiarity with NBS Heard abut NBS but d talk with prvider Have frmed pinins abut NBS, nt sure if prvider engagement is needed D nt supprt NBS and will push back n system requirements Infrmed and engaged with prvider abut NBS steps Expectant f NBS as a critical step in well baby prcess Stages f Precautin Adptin Prcess Mdel (PAPM) Used t infrm message design that will encurage health behavir change Explains hw a persn cmes t make the decisin t be mre engaged in NBS prcess Previusly applied t steprsis preventin, mammgraphy, hepatitis B vaccinatin

15 Research Questins RQ1: What are the barriers, perceptins and beliefs held by African American (AA) wmen regarding genetic testing? RQ2: What best practices are recmmended by minrity-serving physicians t imprve educatin and targeting gaps fund in NBS? RQ3: What recmmendatins can be made t mve African American mthers frm unaware f NBS and its benefits t engaged and practively invlved in the NBS prcess?

16 Healthcare Prvider Outreach Original gal f c-branding prduct develpment with lcal healthcare rganizatin (April May 2013) Fultn-Dekalb Hspital Authrity Mrehuse Schl f Medicine Fultn Cunty Department f Health and Wellness Re-shifted and identified minrity-serving healthcare prviders representing full cycle f clinician engagement during pregnancy and pst-delivery Cnducted key infrmant interviews (June July 2013) Obstetrician (Grady Memrial Hspital) Nenatlgist (Flyd Medical Center NICU) Pediatrician/Family Practitiner (Dekalb Family Medicine) Labr and Delivery Nurse (Cmmunity Health)

17 Patient Advcate Interviews Recruited 10 African American wmen and new mthers living in Fultn and Dekalb cunties (Atlanta, GA) Cnducted key infrmant interviews t assess (July/August 2013): Knwledge level abut NBS prcess Experiences with NBS during their recent patient and delivery Perceived imprtance f NBS Level f engagement with prvider abut NBS (nne, passive, practive) Gained cnsent fr participatin in patient activatin vide

18 Results RQ1: What are the barriers, perceptins and beliefs held by African American wmen regarding newbrn screening? Mst participants were unaware f newbrn screening (familiarity with the prcess, definitin, etc.) Mst participants reprted that their physicians had nt discussed NBS with them (r did nt remember the discussin ccurring) Mst participants were familiar with cmmn utcmes discvered via NBS (e.g. sickle cell) Mst participants just knw that the babies are ging t get a test, nt specifics r practive abut it Sme cnfusin existed between purpse f newbrn screening and genetic testing that ccurs during weeks gestatin Once explained, all AA wmen recgnized the imprtant rle NBS played in keeping their babies healthy Many asked abut the financial implicatins f NBS (e.g. is the service cvered by insurance?) Educate patients when they sign the cnsent t treatment and care in hspital mst participants were nt aware f NBS implicatins/detail

19 Results RQ2: What best practices are recmmended by minrity-serving physicians t imprve educatin and targeting gaps fund in NBS? Obstetricians shuld initiate the educatin during initial patient visit and reinfrce NBS prcess at 36 weeks Althugh NBS is mandated by state laws, prviders were unclear abut wh pays and hw much the labratry testing is Essentially, prviders shuld knw in a clear talking pint, the requirements fr their state, Infants are tested fr 28 metablic and endcrine disrders Mst prviders mentin NBS but, admittedly, d nt g int detail with the patient Mst patients assume that this is smething that happens pst-delivery and are nt engaged Mst wmen are nt learning r taking in infrmatin during labr and pst-delivery, may nt be ideal time t intrduce NBS details The majr barrier t NBS educatin is time - When shuld this be dne? Why is it beneficial? Cited breastfeeding educatin as a gd mdel t explain NBS benefits

20 Results RQ2: What best practices are recmmended by minrity-serving physicians t imprve educatin and targeting gaps fund in NBS? Use culturally apprpriate terms when explaining NBS, e.g. mst AA patients are familiar with sickle cell disease Expect resistance (r questins) frm parents wh prefer r are supprt natural/rganic childcare prcesses (averse t frmalized testing) Hspital persnnel shuld als reinfrce/educate AA parents n the NBS prcess and expectatins Mst patients d nt have enugh infrmatin t ask specific questins Sme patients may nt ntice that their baby was tested (heel stick) since a sck is placed n the baby s ft immediately fllwing Mre educatin materials are needed at the prvider-level t share infrmatin with patients A few prviders were unaware f any NBS educatinal cllateral; NICU prvider has wn factsheet n NBS prduced by her hspital, which requires patient signature f receipt Encurage patients t determine their pediatrician prir t delivery t reduce delays in NBS screening ntificatin

21 Results RQ3: What recmmendatins can be made t mve African American mthers frm unaware f NBS and its benefits t engaged and practively invlved in the NBS prcess? Wrk with AA parents (target audience) t develp patient educatin materials Intrduce newbrn screening educatin t expecting mthers early and frequently Increase cnsumer educatin n newbrn screening, especially in cmmunities f clr Waiting rm vides/educatin Take-hme materials Use culturally-apprpriate language, strytelling techniques and use cntent written at apprpriate literacy-levels Be instructive in patient-educatin materials Use frequently asked questins Have a clear call t actin, talk with yur dctr t learn mre abut the NBS prcess and what t expect when yur baby arrives.

22 Thematic Analysis Imprtant issue, nt much discussin ccurs during gestatinal perid Fr thse patients wh are engaged (knw that a test will ccur generally) they may nt have enugh infrmatin t be practive Encurage AA patients t select a pediatrician during prenatal phase Even after screening ccurs, mthers are usually preccupied, recvering frm delivery and are als nt practively engaged Patients care, they may nt have the prper knwledge t act Newbrn screening is a tp-dwn, clinician expectatin, little r n frmal cnsumer engagement systematically

23 Key Findings Mst AA wmen are nt aware f the newbrn screening prcess r state requirements Insurance implicatins fr newbrn screening are unclear Prmting and educating newbrn screening at intervals thrughut gestatin, pst-delivery and in early pediatric visits is essential Mst minrity-serving prviders were nt aware f educatinal materials in this area Recmmend engagement with brad healthcare prvider team

24 Prduct Develpment Develped cntent and messages fr patient engagement (August-September 2013) Patient Activatin Vide targeting AA cnsumers Recruited new mthers and engaged minrity-serving healthcare prviders in script develpment Vide sht will be held at Grady Memrial Hspital (Atlanta, GA) Factsheet targeting AA cnsumers Utilized brad healthcare messages frm Baby s First Test Included strytelling call-ut and culturally apprpriate imagery Featured frequently asked questins Designed t cmplement the Baby s First Test Newbrn Screening: Get the Facts factsheet (clr, layut, etc.) Written at apprpriate/lw literacy level, Flesch-Kincaid Grade Level: 8.8

25 Prduct Develpment

26 Partner Outreach and Disseminatin Strategy Hst a webinar fr key stakehlders, cmmunity rganizatins and minrity-serving physician rganizatins Champin system-level strategies t: Intrduce newbrn screening educatin t expecting mthers early and frequently Gain supprt frm the full healthcare team (bstetricians, labr and delivery nurses, pediatricians, nenatlgists) Ensure prper distributin f patient educatin materials and talking pints t healthcare prviders, particularly minrity serving prviders (printready, mdifiable templates)

27 Fr mre infrmatin n this activity and ther wmen s health initiatives, please cntact us: SupprtTableFrTw Phne: Mnica: mlp@mlpcmmunicatins.cm Fllw Mnica n Sjurner: SjurnerGrimmett@gmail.cm Fllw Sjurner n