Elisa J. Gordon|Juan Carlos Caicedo|Daniela P. Ladner|Elizabeth Reddy|Michaël Abécassis
Transplant Center Provision of Education and Culturally and Linguistically Competent Care: A National Study
Northwestern University|Northwestern University|Northwestern University|Northwestern University|Northwestern University
although transplant centers required educate patients kidney transplantation kt living donation ld little known educational format cultural linguistic competence necessary patients make informed treatment decisions study surveyed us transplant administrators education provided concerning kt ld culturally linguistically competent care transplant administrators invited participate anonymous internetbased survey education format education providers promoting ld culturally linguistically competent care center characteristics 61 transplant administrators contacted n 280461 completed survey administrators 91 reported center provides type formal education prekt evaluation education mostly provided nurses 97 social workers 72 surgeons 55 predominantly oneonone 80 versus group discussions 60 education primarily delivered written materials 93 written educational materials spanish 86 provision interpreters 82 emphasized educational sessions spanish 39 employing bilingual 51 bicultural staff 39 half 55 promoted ld best option transplant centers need take greater efforts consistently provide appropriate education promote ld provide culturally linguistically competent care ensure effective communication patients although transplant centers required educate patients kidney transplantation kt living donation ld little known educational format cultural linguistic competence necessary patients make informed treatment decisions study surveyed us transplant administrators education provided concerning kt ld culturally linguistically competent care transplant administrators invited participate anonymous internetbased survey education format education providers promoting ld culturally linguistically competent care center characteristics 61 transplant administrators contacted n 280461 completed survey administrators 91 reported center provides type formal education prekt evaluation education mostly provided nurses 97 social workers 72 surgeons 55 predominantly oneonone 80 versus group discussions 60 education primarily delivered written materials 93 written educational materials spanish 86 provision interpreters 82 emphasized educational sessions spanish 39 employing bilingual 51 bicultural staff 39 half 55 promoted ld best option transplant centers need take greater efforts consistently provide appropriate education promote ld provide culturally linguistically competent care ensure effective communication patients patients endstage organ disease routinely referred transplant centers learn transplantation eligibility transplantation donation patients rights condition medicare participation hospitals 1us department health human services centers medicare medicaid services 42 cfr volume 3 part 482 medicare program hospital conditions participation 2004 available httpwwwaccessgpogovnaracfrwaisidx0442cfr48204html accessed january 11 2010google scholar require transplant candidates potential donors educated procedures risks benefits alternatives transplantation 2abecassis adams adams p et alconsensus statement live organ donorjama 2000 284 29192926crossref pubmed scopus 414 google scholar transplant centers required provide patients extensive informed consent process beginning referral ending surgery 3us department health human services centers medicare medicaid services 42 cfr parts 405 482 488 498 medicare program hospital conditions participation requirements approval reapproval transplant centers perform organ transplants final rule 2007 available httpwwwcmshhsgovcertificationandcompliancdownloadstransplantfinalpdf accessed november 23 2009google scholar however standardized tool evaluates assures comprehension informed consent tailored transplantation although department veterans affairs developed generic tool surgical procedures 4fink prochazka henderson w et alenhancement surgical informed consent addition repeat back multicenter randomized controlled clinical trialann surg 2010 252 2736crossref pubmed scopus 91 google scholar transplant education essential ensuring patients donors informed treatment decisions increasing patients access transplantation 5waterman barrett stanley optimal transplant education recipients increase pursuit living donationprog transplant 2008 18 5562crossref pubmed google scholar education also pivotal increasing likelihood patients pursue option living donation ld offers better health outcomes recipients deceased donor kidney transplants 6rodrigue j cornell kaplan b howard r randomized trial homebased approach increase live donor kidney transplantation effects blacks whitesam j kidney dis 2008 51 663670abstract full text full text pdf pubmed scopus 106 google scholar little known transplant programs educate patients provides education studies report transplant nurses typically provide education followed transplant nephrologists surgeons 7mcpake burnapp l caring patients kidney transplantationnurs stand 2009 23 4957crossref pubmed google scholar8smith md kappell df province et allivingrelated kidney donors multicenter study donor education socioeconomic adjustment rehabilitationam j kidney dis 1986 8 223233abstract full text pdf pubmed scopus 105 google scholar absence standardized process educating patients raises ethical concerns quality care consistent levels education across transplant centers needed facilitate equal awareness access transplantation 7mcpake burnapp l caring patients kidney transplantationnurs stand 2009 23 4957crossref pubmed google scholar study kidney transplant candidates found received education transplant centers 79 dialysis centers 66 regular physician 54 31 desired information ld 5waterman barrett stanley optimal transplant education recipients increase pursuit living donationprog transplant 2008 18 5562crossref pubmed google scholar research suggests patients rely heavily transplant centers education treatment options furthermore simply providing education sufficient rather education must delivered culturally linguistically competent ways table 1 presents definitions types competency national policymaking organizations including institute medicine iom american medical association ama department health human services dhhs advocate provision culturally linguistically competent care form quality patientcentered care 13institute medicine committee quality health care america crossing quality chasm new health system 21st century washington dc national academies press 2001google scholar14fortier j bishop brach c ed setting agenda research cultural competence health care final report rockville md us department health human services office minority health agency healthcare research quality 2003google scholar culturally linguistically competent care integral health people 2010 goals increase quality years healthy life eliminate health disparities 15us department health human services healthy people 2010 understanding improving health washington dc us department health human services 2000google scholartable 1definitions culture cultural competency linguistic competencycultureculture civilization taken broad ethnographic sense complex whole includes knowledge belief art morals law custom capabilities habits acquired man member society9tylor eb primitive culture london john murray 1871google scholarcultural competencya set values principles behaviors attitudes policies structures enable organizations individuals work effectively crosscultural situations10us department health human services office minority health national standards culturally linguistically appropriate services health care final report washington dc us department health human services 2001google scholarlinguistic competencythe capacityto communicate effectively convey information manner easily understood diverse audiences including persons limited english proficiency low literacy skills literate individuals disabilities deaf hard hearing10us department health human services office minority health national standards culturally linguistically appropriate services health care final report washington dc us department health human services 2001google scholar11goode td jones w national center cultural competence georgetown university center child human development march 2009 available httpwww11georgetowneduresearchgucchdncccfoundationsframeworkshtmllcdefinition accessed july 1 2010google scholarlimited english proficiencyindividuals speak english primary language limited ability read speak write understand english limited english proficient lep individuals may entitled language assistance respect particular type service benefit encounter federal laws particularly applicable language access include title vi civil rights act 1964 title vi regulations prohibiting discrimination based national origin executive order 13166 issued 2000 many individual federal programs states localities also provisions requiring language services lep individuals121lepgov website federal interagency working group limited english proficiency limited english proficiency federal interagency website available httpwwwjusticegovcrtlepindexhtmaccessed may 26 2010google scholar open table new tab extent transplant centers provide culturally linguistically competent care remains unknown however providing culturally linguistically competent care especially important transplantation proportion racial ethnic minority kidney transplant recipients rapidly increasing particular hispanics fastest growing ethnic minority group united states comprised 147 kidney transplant recipients 2009 16unos web site 2010 data available athttpwwwunosorgdata accessed february 10 2010google scholar additionally hispanics disproportionately represented 179 among candidates waiting kidney 16unos web site 2010 data available athttpwwwunosorgdata accessed february 10 2010google scholar indicating hispanics need kidney transplants disproportionately nonhispanic whites moreover cultural values beliefs inform hispanics minority groups treatment decisions regarding transplantation ld 17siegel j alvaro e lac crano w intentions becoming living organ donor among hispanics theorybased approach exploring differences living nonliving organ donationj health commun 2008 13 8099crossref pubmed scopus 65 google scholar culturally competent programs may help address patients cultural concerns increase ld rates culturally competent interventions found increase deceased organ donation rates among african americans hispanics 6rodrigue j cornell kaplan b howard r randomized trial homebased approach increase live donor kidney transplantation effects blacks whitesam j kidney dis 2008 51 663670abstract full text full text pdf pubmed scopus 106 google scholar18alvaro e siegel j crano w dominick mass media intervention hispanic organ donationj health commun 2010 15 374387crossref pubmed scopus 34 google scholar therefore important transplant centers provide culturally linguistically competent care racialethnic minority patients better comprehend available treatment options effectively manage transplant option pursued undertook study assess extent us kidney transplant programs provide education culturally linguistically competent care kidney transplant candidates recipients donors assessing transplant centers provide education clinicians provide education availability culturally sensitive education services allow us establish standards education care obtained email addresses united network organ sharing unos 555 transplant administrators representing active unos member transplant centers performing organ transplants 2009 n 253 email inviting participation internetbased survey sent 555 administrators five times february 2009 june 2010 one administrator center could respond thirtyfour emails returned undeliverable error 59 administrators appropriately declined participation represent kidney transplant programs left center reduced eligible sample 461 survey anonymous order increase response rates identities participating centers unknown thus analysis based administrator responses rather participating centers institutional review board approval study obtained northwestern university consent study participation presumed upon completion online survey simple categorical analyses transplant center selfreported characteristics types education format culturally linguistically competent care based pearsons chisquare test dichotomized 010 vs 11 promotion kidney transplant recipients spanishonly speakers analysis purposes tests twotailed p 005 considered statistically significant statistical analyses performed using spss 180 spss inc chicago il usa brief openended responses analyzed using content analysis systematically categorize responses themes question topic emergent data 19bradley eh curry la devers kj qualitative data analysis health services research developing taxonomy themes theoryhealth serv res 2007 42 17581772crossref pubmed scopus 2005 google scholar inductively generated codes using constant comparative method compare differentiate data bits categories 19bradley eh curry la devers kj qualitative data analysis health services research developing taxonomy themes theoryhealth serv res 2007 42 17581772crossref pubmed scopus 2005 google scholar codes applied new group responses coding scheme revised adjust new responses modified codes applied previous set responses process repeated new codes emerged saturation achieved 19bradley eh curry la devers kj qualitative data analysis health services research developing taxonomy themes theoryhealth serv res 2007 42 17581772crossref pubmed scopus 2005 google scholar two authors ejg er independently coded responses resolved discrepancies codes consensus two hundred eighty 61 kidney transplant administrators completed survey 11 unos regions represented table 2 describes center characteristics participating administrators administrators responded n 263 represented adult 61 pediatric 24 adult pediatric 15 transplant centers administrators reported hispanics spanishonly speakers ranged proportion within kidney transplant recipients shown table 3 47 administrators responding reported hispanics represent 10 kidney recipient population 24 administrators stated spanishonly speakers represent 10 kidney patient populationtable 2transplant center characteristicsn volume kidney recipients 20081percentages add 100 25 respondents answer question049 patients120 435099 patients71 25100199 patients40 14200 patients24 9unos region2sixteen respondents respond1 ct ri nh6 22 de wa dc md nj pa wv33 123 al ar fl ga la mi pr26 94 ok tx38 145 az ca nv nm ut36 136 hi wa id mt ak9 37 il mn nd sd wi32 118 co ia ka mo ne wy19 79 ny vt19 710 mi oh19 711 ky nc sc tn va27 10proportion recipients living donortransplants 20083twenty respondents notrespond01040 14112038 14213059 21314028 10415052 19516030 11617013 51 percentages add 100 25 respondents answer question2 sixteen respondents respond3 twenty respondents notrespond open table new tab table 3proportion kidney transplant recipients hispanic spanish speakinghispanic1percentages add 100 32 respondents respond n spanishonly speakers2percentages add 100 26 respondents respond n 010132 47194 69112038 1434 12213024 912 4314026 97 341508 32 151607 34 16113 51 11 percentages add 100 32 respondents respond2 percentages add 100 26 respondents respond open table new tab administrators 91 reported transplant program provides incenter formal educational sessions kidney pretransplant evaluation shown table 4 clinicians routinely provided education nurses 97 social workers 72 surgeons 55 subset respondents 18 reported one person provided education others reported combinations clinicians person identified single educator either nurse n 42 clinician n 7table 4clinicians routinely provide education kidney patientscandidatescliniciann nurse271 97social worker202 72surgeon153 55nephrologist136 49financial counselor54 19dietician42 15physician assistant29 10transplant coordinator28 10transplant pharmacist18 6other21 8 open table new tab transplant administrators reported centers relied upon combinations formal educational formats common written materials 93 oneon one education 80 group lecture 60 table 5 six administrators mentioned one form education provided one noted formal education providedtable 5types education provided part formal education sessions1six respondents reported one format used others used combinations modes education deliveryeducation formatn written material261 93oneonone education224 80group lecture169 60powerpoint presentation138 49video105 38none1 11 six respondents reported one format used others used combinations modes education delivery open table new tab administrators reported program promotes living kidney donation least one way table 6 presents approaches used transplant centers promote ld commonly used approach discuss option ld oneonone basis 94 half respondents 55 reported programs tell patients ld best option respondents n 20 reported one method promoting ld used instances oneonone education predominantly used promote ldtable 6approaches used promote living donation ldmethodn routinely discuss option ld oneonone basis262 94encourage patientscandidates bring friends family members potential living donors pretransplant kidney evaluation228 81routinely discuss option ld group setting171 61tell patients ld best option153 55discuss option ld transplant team thinks specific patient might benefit it12 4discuss option ld patient brings up11 4 open table new tab table 7 presents types culturally linguistically competent care centers provided multicultural patients general hispanic spanishspeaking patients specifically administrators reported centers relied upon interpreters either person 7882 phone 76 half provide bilingual 51 bicultural staff 4339 third 3429 reported transplant center staff receives cultural competency trainingtable 7types linguistically culturally competent care provided transplant programstype care providedmulticultural patient pop n hispanic spanishspeaking pop n interpreters person219 78230 82interpreters phone214 76213 76bilingual staff144 51143 51bicultural staff120 43109 39cultural competency training95 3481 29community liaisons44 1634 12none02 1 open table new tab although administrators reported center provides written educational materials spanish 86 written medical instructions spanish 71 third 39 administrators reported centers provide educational sessions spanish proportion spanish speakers respondents centers significantly related provision spanishlanguage written educational materials x2 49 p 0033 written medical instructions x2 117 p 00005 verbal educational sessions x2 508 p 00005 first national survey assess provision education culturally linguistically competent care across adult pediatric kidney transplant centers found three key results first transplant centers vary provision education terms provides format delivery second transplant centers insufficiently promote ld option third transplant centers provide forms culturally linguistically competent care multicultural andor hispanic kidney transplant patient populations centers rely predominantly nurses combination clinicians various educational formats deliver education kidney transplant patients research corroborates findings 7mcpake burnapp l caring patients kidney transplantationnurs stand 2009 23 4957crossref pubmed google scholar older study surveyed 503 living kidney donors principal sources information donation recipients transplant nephrologist transplant surgeon 455 followed transplant nurse 271 health care professionals 95 social workers 57 others 122 8smith md kappell df province et allivingrelated kidney donors multicenter study donor education socioeconomic adjustment rehabilitationam j kidney dis 1986 8 223233abstract full text pdf pubmed scopus 105 google scholar found administrators 86 reported using written materials educating transplant patients similarly survey study 403 abdominal organ transplant recipients preferred educational delivery methods prior transplantation oneonone discussions health care providers 48 video tapes dvds 47 computer resources 47 20myers j pellino developing new ways address learning needs adult abdominal organ transplant recipientsprog transplant 2009 19 160166crossref pubmed google scholar additionally older survey living kidney donors n 536 reported received information discussions 942 printed materials 473 lectures 64 slides movies videos 32 reporting information reasonably extremely helpful 749 acceptable 207 helpful 44 8smith md kappell df province et allivingrelated kidney donors multicenter study donor education socioeconomic adjustment rehabilitationam j kidney dis 1986 8 223233abstract full text pdf pubmed scopus 105 google scholar relatively small proportion administrators reported centers provide educational sessions spanish problematic given high proportion hispanic patients spanish speaking given constant need unclear centers consistently provide information spanish across materials however finding number spanish speakers proportionate provision spanishlanguage written educational materials suggests centers larger spanishspeaking patient populations likely meet needs spanishspeaking patient population greater reliance written educational material spanish educational discussions spanish may undermine learning among limited english proficient low literate patients see table 1 limited english proficient individuals constitute 47 million 18 us citizens onethird men women united states lowest levels health literacy 21nielsonbohlman l panzer kindig da health literacy prescription end confusion washington dc national academies press 2004google scholar national survey shows 41 latinos classified lowest level basic literacy proficiency compared 9 whites 24 african americans 22kutner greenberg e baer ja first look literacy americas adults 21st century nces 2006470 washington dc us department education national center education statistics 2005google scholar accordingly alternative educational formats used research among healthy individuals found recall improves information delivered visually auditorily individuals discuss material 23kang e fields h kiyak beck fm firestone informed consent recall comprehension orthodontics traditional vs improved readability processability methodsam j orthod dentofacial orthop 2009 136 e481e413abstract full text full text pdf scopus 13 google scholar based experiences northwesterns comprehensive transplant center includes transplant program focused solely hispanics almost 75 hispanic patients spanishonly speaking recommend transplant centers high proportion hispanic spanishonly speaking patients increase use group discussions consider delivering discussions spanish transplant centers insufficiently promote ld given living kidney donation leads best transplant recipient outcomes 16unos web site 2010 data available athttpwwwunosorgdata accessed february 10 2010google scholar kidney transplant centers 68 2009 operational living kidney donation program 24unosoptn united network organ sharing transplant centers performing kidney transplants us january 12000 february 28 2010 year based optn data may 14 2010google scholar defined performing least 10 living donor kidney transplants per year surprising find half respondents reported informing patients ld optimal treatment unknown half administrators report centers promote ld recommend transplant centers provide formal educational programs ld increase likelihood ld ensure informed treatment decisions improve kidney recipient outcomes help reduce organ shortage data indicate us kidney transplant centers provide forms culturally linguistically competent care emphasis linguistic competency appears overshadowed need culturally competent efforts although interpreters valuable myriad logistic ethical problems translation remain 14fortier j bishop brach c ed setting agenda research cultural competence health care final report rockville md us department health human services office minority health agency healthcare research quality 2003google scholar particularly communicating complex clinical conditions transplantation nonetheless considerably fewer centers rely upon bicultural bilingual staff although bicultural bilingual staff hold wealth knowledge transplantation staff bilingual bicultural additionally valuable able communicate patients native language personally familiar cultural traditions specific patient population although bilingual staff may familiar cultural norms expressed language less likely proficient patients cultural belief system bicultural transplant staff may therefore effective communicating patients respective families may maintain beliefs values kidney donation transplantation differ transplant professionals expectations transplant program administrators may question whether need provide linguistically culturally competent care patients representing cultural groups according title vi communicating limited english proficiency patients hospitals receiving department health human services dhhs federal financial assistance must take reasonable steps ensure meaningful access information services provide limited english proficient persons 25federal register executive order 13166 august 11 2000 improving access services persons limited english proficiency vol 652000 pp5012150125google scholar would behoove transplant centers take leadership role providing culturally linguistically competent care given unique needs transplant recipient donor populations potential impact care outcomes 26woerner l espinosa j bourne otoole ingersoll g project exito success diversity universality outcomes improvement among hispanic home care patientsnurs outlook 2009 57 266273abstract full text full text pdf pubmed scopus 15 google scholar enhancing transplant centers educational programs increasing cultural linguistic competency requires resources staff availability financial support time others recommended approaches overcoming time barriers education including sending videos cds dialysis centers distribution 20myers j pellino developing new ways address learning needs adult abdominal organ transplant recipientsprog transplant 2009 19 160166crossref pubmed google scholar study limitations survey anonymous able assess quality education culturally competent care individual transplant center transplant administrators