Table Of Content)
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COMMUNICATING WITH HISPANIC
CANCER PATIENTS:
A FOCUS GROUP STUDY
52
O^.3t=:0i0nN
Preparedby:
NelvisCastro
EllenEisner %8
MelissaKrausTaylor -3 > co
VictorSierra
MargaritaGonzalez-Miranda i
CarmenRodriguez
OfficeofCancerCommunications
NationalCancerInstitute
31 CenterDrive,MSC2580
Building31,Room 10A03
Bethesda,Maryland20892
Spring1996
COMMUNICATINGWITHHISPANICCANCERPATEENTS:
AFOCUSGROUPSTUDY
TABLEOFCONTENTS
Page
I. EXECUTIVESUMMARY 1
A. Introduction 1
B. Method 1
C. SummaryofFindings 2
D. ConclusionsandImplications 9
E. Recommendations 12
BACKGROUNDANDMETHOD
II. 15
III. DETAILEDFINDINGS 18
A. ProfileofParticipants 18
B. CommonalitiesAmongVariousHispanic/Latino
GroupsRepresented 18
C. OverallReactionsofParticipantstoFocusGroupSetting 19
D. AttitudesandPerceptionsAboutCancerDiagnosisand
Treatment 20
E. HealthCareProvidersandCommunitySupporttoCancer
Patients 23
F. InformationonCancerBeforeandAfterDiagnosis 25
G. KnowledgeandAccesstoInformationSourcesFollowing
Diagnosis 26
H. KnowledgeandAccesstoCommunityOrganizations
andGroups 27
I. RoleofChurchesandReligiousGroupsinCancer-
RelatedIssues 28
J. SocialSupportsforCancerPatients 28
K. MediaUsageandPreferences 30
L. Cancer-RelatedMaterialsandMessages 32
M. ReactionstoVideo"Unavezalano...Paratodaunavida" 34
N. ClinicalTrials 34
O. ReactionstoCoverArtonaSpanishLanguagePublication
AboutClinicalTrials 35
IV. APPENDICES
A. HispanicFocusGroupModerator'sGuideforCancerPatients
B. Grupodediscusionconpacienteshispanos/latinosquetienen
cancer. Referenciaparalamoderadora
C. CancerCareIssuesAmongHispanicPatients: RecruitingCriteria
D. Temassobreelcuidadodepacienteshispanosconcancer. Grupo
dediscusion. Requisitosparalaselectiondeparticipantes.
E. CoverArtClinicalTrials. "^Enqueconsistenlosestudiosclinicos?'
EXECUTIVESUMMARY
I.
A. INTRODUCTION
Since1992,theHispanicEducationProgramatNCI'sOfficeofCancerCommunications(OCC)
hasbeenworkingonthedevelopmentofSpanish-languageandbilingualeducationalmaterials
aboutcancer-relatedissues. Thesematerialshavebeenwrittenineasy-to-understandSpanish
appropriateforallHispanicgroups.However,withtherapidincreaseinnumbersanddiversityof
theU.S.Hispanicpopulation,OCCconsidereditimportanttoconductadditionalqualitative
researchaimedatbetterunderstandingtheHispanic/Latinoaudienceanddeterminingthemost
effectivewaystoaddresstheircancerinformationneeds. Thecurrentstudyfocuseson
Hispanic/Latinocancerpatients.
ThepurposeofthestudywastoexamineHispanic/Latinocancerpatients'knowledge,
perceptions,attitudes,practices,andhealthbehaviorsrelatedtocancercareissues. Anadditional
aimofthestudywastoidentifycommonalitiesamongHispanic/Latinogroups(e.g.,Mexican
Americans,PuertoRicans,CubanAmericans,CentralAmericans,andSouthAmericans),
includingsourcesofinfluenceandinformationwithinthecommunitythatcanaffectbehavior
change.
B. METHOD
AtotaloffourfocusgroupswereconductedduringFebruaryandMarch1995inWashington,
D.C.,NewYork,SanAntonio,andLosAngeles. Thesecitieswereselectedonthebasisof
geographicorregionalrepresentation,aswellastheirhighconcentrationofthetargetaudience
(i.e.,Hispanics/Latinosoflowsocioeconomicstatus).
Thecriteriaforrecruitingpatientsensuredthatvariouscountriesoforiginwouldberepresented
ineachgroupsession. Allfocusgroupsweredividedbygendertoencourageopen
communicationandtogetmoredetailedinformationfrommalesandfemalesregardingtheir
healthcare. ThefocusgroupsessionsinWashington,D.C.,andSanAntoniowerecomposed
entirelyoffemalecancerpatients,whilethesessionsinNewYorkandLosAngeleswere
composedofmalecancerpatients.
Participantsinthefocusgroupswerefairlyhomogeneousinage,language,andincome. All
participantswerebetween45and65yearsofage,spokeprimarilySpanishathome,andhadan
annualhouseholdincomeof$25,000orless. ThegroupswereconductedinSpanishbya
bilingual/biculturalfemalemoderatorandabilingual/biculturalfemaleresearchassistant..
Toassistwithresearchplanningandimplemention,anAdHocWorkingGroupwasestablished
composedofrepresentativesfromtheNationalHispanicLeadershipInitiativeonCancer
(NHLIC);outreachcoordinatorsfromNCI'sCancerInformationService(CIS);OCCstaff
members;andotherprofessionalswhoregularlycommunicatewithHispanics/Latinoson
health. Inseveralcities,therecruitmentofpatientswasfacilitatedbylocalrepresentativesfrom
thesegroups. Forexample,CISoutreachcoordinatorsandNHLICrepresentatives,aswellaskey
leadersincommunityhealthclinics,providedassistanceinWashington,DC,SanAntonio,and
NewYork. InLosAngeles,aHispanic/Latinoresearchvendorwasusedforrecruitment. At
eachsite,aSpanish-language"screeningquestionnaire"wasusedtoidentifythespecificvariables
andcharacteristicsconsideredimportantforrecruitment.
Topicsonthemoderator'sdiscussionguideincludedparticipants'knowledgeandbeliefsabout
cancerpriortoandfollowingdiagnosis;adequacyofinformationreceivedondiagnosisand
treatment;awarenessanduseofcommunityresourcesprovidingcancerservices(e.g.,support
groups,800lines);useofSpanish-andEnglish-languagemedia;reactionstosegmentsofa30-
minuteSpanishvideoonmammographyandbreastcancer("Unavezalano...Paratodalavida");
andknowledge/awarenessofclinicaltrials.
C. SUMMARYOFFINDINGS
CommonalitiesAmongtheVariousHispanic/LatinoGroupsRepresented
Ingeneral,differencesincountryoforigindidnotaffectgroupdynamics. Allparticipants
feltcomfortablewitheachotherandexpressedasenseofbelongingtoalarger
Hispanic/Latinocommunitythatwentbeyondspecificnationalities. Participantsindicated
thattheyhaveastrongsenseofcommunityandthatpeersupportfromotherSpanish-
speakingHispanic/Latinocancerpatientsisveryimportanttothem. Therewerefew
noticeableand/orsignificantdifferencesbycountryoforiginamongtheparticipants.
GeneralReactiontoFocusGroupSetting
ParticipantsseemedtoenjoyinteractingwithotherHispanic/Latinocancerpatientsinthe
groupdiscussionformat. Theyweregenerallypleasedwiththefocusgroupsetting,
describingitasagoodchannelbywhichtogetinformationandemotionalsupport. Both
menandwomenshowedempathytowardtheirpeersandofferedemotionalsupportas
needed. Manyfeltthattheyhadresponsibilityforreachingoutandhelpingother
Hispanics/Latinos.
OverallAttitudesandPerceptionsofCancerDiapnosisandTreatment
Lackofknowledge,languageproblems,andaccessbarrierspreventedthevastmajorityof
participantsfromgettingregularcancerscreeningtestsbeforetheywerediagnosedwith
cancer. Althoughmosthavelearnedmoreaboutcancerscreeningtestssincethattime,
somestillthinkthesetestsmaynotbetotallyreliable.
Mostparticipantswereawareofatleastsomebehaviorsorfactorsthatplacepeopleat
riskofgettingcancer. Afewparticipantssuspectedtheyweregoingtogetcancereither
becausethereweremanycasesofcancerintheirfamiliesorbecausetheysmokedorhad
beenexposedtofumesfromtoxicsubstances(e.g.,glue,chemicals).
Themajorityofparticipantswereseriouslyconcernedabouttheeffectthattheircancers
werehavingontheirfamilies. Thisattitudereflectsacentralculturalvalueofthe
Hispanic/Latinocommunity,inwhichthefamilyunitisconsideredmoreimportantthan
theindividual.
Supportfromfamilymembers,particularlyspousesandchildren,wascrucialintreatment
decisionsfornearlyallparticipants. Inmostcases,supportfromthefamilydeterminesif
thepatientwillgetintotreatment,whattypeoftreatmentheorshewillget,aswellas
compliancewithtreatmentandotherdoctor'srecommendations.
PeersupportfromotherHispanic/Latinocancerpatientsalsoplaysaroleindecision-
making. Afewparticipantswhobelongtosupportgroupsstatedthattheyhavetakenthe
experiencesofothercancerpatientsintoaccountwhendecidingontreatmentoptionsor
supportservices. Mostparticipantsexpressedinterestinestablishingandmaintaining
contactwithotherHispanic/Latinopatientsasawaytoaccessinformationabout
treatmentandsupportservicesandtoobtainemotionalsupport.
Mostparticipantsstartedtreatmentshortlyafterdiagnosisandfollowedtheirdoctors'
treatmentrecommendations. Forsome,placingblindtrustandfaithinhealthcare
providers(i.e.,notaskingquestionsorseekingsecondopinions)wasanaturaloutcomeof
theesteemwithwhichphysiciansareviewedintheircommunity. Otherparticipants,
however,saidtheyfollowedtheirdoctors'recommendationsbecausetheyfelttheyhadno
otherchoice--doctorsweretheironlyhopeforsurvival. Someindividualshadthe
impressionthathealthcareprovidersmaybetryingtreatmentsandmedicationsonpatients
withoutknowingiftheywillbeeffective.
Manyparticipantshadusedfolk/homeremediesfortheircancer. Ahighleveloftrustwas
expressedinfolkremedies,particularlyin"unadegato"(cat'snails),anherbthatistaken
fromaplantwhichcanbeusedasteaorinpills. Manyparticipantstrulybelievethatthis
folkremedycancurecancer. Inmostcases,however,folkremediesareusedasa
complementto,notasubstitutefor,biomedicaltreatmentandmedications.
PerceptionofHealthCareProviders
Overall,participantswhohadaHispanic/Latinodoctorreportedamoresatisfyingdoctor-
patientrelationshipthanthosewhodidnot. Manysaidthattheywouldprefergoingtoa
Hispanic/Latinohealthcareprovider,butthatitisverydifficulttofindone.
Agenerallackoftrustinnon-Hispanic/Latinohealthcareproviderswasexpressedby
L someparticipants. Inparticular,womenwhohadexperiencedsymptomsorsignsof
cancerbeforediagnosiscomplainedthatvarioushealthcareprovidershadmisdiagnosed
them.Somewomenalsoreportedalackofsensitivityandhumanenessonthepartofnon-
Hispanichealthcareproviders,indicatingthattheseindividualshadtreatedthemasthough
theyweremakinguptheirsymptomsandsignsofcancer. Thisinsensitivitywasalso
evidentinhealthcareproviderswhoeitherstatedorimpliedthatparticipantsweregoing
todieofcancer.
Negativefeelingswereexpressedaboutthelackofpersonaltouchthatpatientsexperience
innon-Hispanicdoctor-patientrelationships. Traditionally,Hispanics/Latinosconsider
thistobeakeyelementintheirassociationwithhealthcareproviders. Participants
indicatedthatwhenhealthcareprovidersdonottakethetimetoexplaincancerand
treatmentoptionstotheirpatients,itsuggestsadisrespectfulattitude.
Someparticipants,particularlymen,feltthatmostofthehealthcareprovidersthey
encounterjustwanttomakemoneyanddonotcareenoughaboutthemaspatients.
PersonalandCommunityReactiontoCancer
Allparticipantsfeltdevastatedwhentheylearnedtheyhadcancer,viewingthediagnosis
asapersonalandfamilytragedy. Thisdevastationandsadnessmaybeseenasareflection
ofthe"fatalismo"(fatalisticattitude)thatiscommonintheHispanic/Latinoculture.
Mostparticipantswerealsooverwhelmedwithanxietywhentheywerediagnosed. They
werefearful oftheconsequencesthatcancertreatmentwouldhaveontheirbodies,and
terrifiedofdyingandnotbeingabletotakecareoftheirfamilies. Thisfearcausedafew
participantstoremaininastateofdenialovertheirdiagnoses.
Afewparticipantsindicatedthattheyfelt"inferior"and/or"incomplete"becauseoftheir
cancer. Theseindividualswerereluctanttodisclosetheircancertoothersforfearof
beingrejectedordiscriminatedagainst. Someparticipants,particularlywomen,reported
feelingembarrassedbecausetheythoughtpeoplewouldthinktheywereunabletotake
careofthemselvesandtheirfamilies. Thisattitudereflectstheimportancethatsome
Hispanic/Latinowomenplaceontheirroleascaretakerofthefamily,arolewhichthey
feeltheymustassumeevenwhentheyaresick.
Amongthemen,somestatedthatcancerhascausedthemtofeelthattheyarenotas
strongastheyshouldbetoworkandtakecareoftheirfamilies. Thisattitudereflectsthe
"machismo"mentalityintheHispanic/Latinoculture,amentalitywhichrequiresmento
actastheprotectorofthefamilyandnotshowanyweakness.
Severalindividualsclaimedtheyhadexperiencedrejectionbecauseoftheircancer. Afew
participantswhohadlostweightfromtheirdiseasesaidthattheindividualswhospurned
themprobablythoughttheyhadADDS,notcancer. Severalwomenindicatedthattheyhad
beenrejectedorabandonedbytheirhusbandsorpartners. Oneparticipantlosther
apartmentandwasharassedbypeoplebecausetheythoughtherdiseasewascontagious.
Severalparticipants,infact,pointedoutthatsomepeopleinthecommunitythinkthat
canceriscontagious. (Note: Thesestories,takentogether,denotealackofknowledgeof
cancerissuesamongsomesectorsoftheHispanic/Latinopopulation.)
InformationaboutCancerBeforeandAfterDiagnosis
Thevastmajorityofparticipantsdidnotknowverymuchaboutcancerwhentheywere
diagnosed. Manysaidthattheyonlyknewitwasan"incurable"anddevastatingdisease.
Thevastmajorityofparticipantsdidnotreceiveanywrittenoraudiovisualinformationon
canceroritstreatmentaftertheirdiagnosis,andnoneweregivenSpanish-language
materialsorinformation. Thetwoparticipantswhoreceivedwritteninformationin
Englishwereunabletouseitbecauseoflanguagebarriers. Mostinformationabout
cancerwassaidtobegivenorallybydoctorsandnurses. Themajorityofparticipants,
however,experienceddifficultyinunderstandingtheirhealthcareprovidersbecauseof
languagebarriers. Forthesereasons,manygroupmemberswerestillconfusedabout
cancer-relatedissues.
Themajorityofparticipantsrelyonfamilymemberstocommunicatewithhealthcare
providers. Mostparticipantshaveseriousdifficultiescommunicatingwithhealthcare
providersbecausetheycannotspeakorfullyunderstandEnglish. Afewparticipantsuse
interpretersfortheirdoctors'appointments,asituationthatsometimescausesconfusion
wheninformationreceivedbyfamilymembersdoesnotagreewiththatreceivedby
interpreters.
KnowledgeandAccesstoInformationSourcesAfterDiagnosis
LackofknowledgeoftheEnglish-languagepreventsthemajorityofparticipantsfrom
gettingcancerinformationand/ormaterials. Mostparticipantsperceivethatthereisalack
ofcancer-relatedinformationinSpanishbecausetheydonotknowaboutanyservices
and/ormaterialscurrentlyavailabletothem.
ManyparticipantsreportedgettingcancerinformationfromtheSpanish-languagemedia,
primarilyfromSpanish-languageradiotalkshows. Theyhavealsoacquiredinformation
fromSpanish-languagetelevisionnewscastsandshows,althoughnotonaregularbasis. A
fewhaveobtainedinformationfromSpanish-languagelocalcommunitynewspapers.
ThevastmajorityofparticipantswouldbeinterestedinreceivingSpanish-language
audiovisualandwritteninformationoncanceranditstreatment. Mostbelievethat
informationaboutcancershouldbegiventoboththepatientandhisorherfamily,since
familymembersareinvolvedinallmedicalandemotionalaspectsofthedisease.
Themajorityofparticipantswoulduseatoll-freenumbertoseekcancerinformationif
theywereabletogetinformationinSpanish. Theywouldalsousesuchaservicebecause
theycanremainanonymousandcallatatimethatisconvenientforthem.
NoneoftheparticipantswereawareofanyGovernmentagencythatprovidesinformation
aboutcancer. Themajoritysaidtheywouldliketoreceiveinformationfroma
Governmentagencybutonlyifitisanagencydedicatedtomedicalresearch.
KnowledgeofandAccesstoCommunityOrganizationsandGroups
Themajorityofparticipantswerenotawareofanyorganizationsorgroupsthatprovide
healthinformationand/orservicestotheHispanic/Latinocommunity. Afewparticipants
mentionedtheAmericanRedCross,andafewwomeninSanAntoniomentionedthe
AmericanCancerSociety(ACS). Asawhole,participantswerenotpersonallyinvolvedin
communityorganizationsorgroups,althoughafewwomeninSanAntonioweretaking
partinsupportgroupssponsoredbytheACS.
LackofoutreachintheHispanic/Latinocommunityaswellasalackofprograms
specificallydirectedtoHispanics/Latinospreventparticipantsfromseekingservicesfrom
communityorganizations. Mostparticipantsindicatedaninterestingettinginvolvedwith
andusingservicesthataredirectedtoSpanish-speakingHispanic/Latinocancerpatients.
OnlyoneparticipantknewabouttheCISSpanish-languagetoll-freenumber. Shelearned
abouttheservicebyreadingabrochurethatshereceivedatacommunityclinic. Whenshe
calledtheCIS,shewaspleasedwiththeinformationprovidedbythecancerinformation
specialist.
RoleofChurchesandReligiousGroupsinCancer-RelatedIssues
Commentsbythevastmajorityofparticipantsshowedverystrongreligiousbeliefsand
values. Nearlyallparticipants,bothwomenandmen,saidthattheirfaithinGodhas
helpedthemtosurvivecancer. ThevastmajorityofparticipantswereCatholicandgoto
Mass,butmanyarenotactivelyinvolvedeitherinthechurchorreligiousgroups. Onlya
fewparticipantsarereceivinghelpandsupportfrompriestsandnuns. Onemangives
testimoniesabouthiscancerinchurchandalsovolunteerstohelpothercancerpatients
andtheirfamilies.
SocialSupportsforCancerPatients
Familymemberswerecitedasthemainsourceofsupportforthevastmajorityof
participants. Familymembersprovidetransportation,helpdecideontreatmentoptions,
translateduringdoctors'appointments,providefinancialresourcestopayfortreatment,
andofferemotionalandmoralsupport. Accordingtoparticipants,thebondsbetween
membersofmostHispanic/Latinofamiliesaresostrongthatthediseaseofonefamily
memberusuallybecomeseveryone'sdisease. AdultHispanic/Latinosonsanddaughters
feeltheyhaveresponsibilityfortakingcareoftheirsickparentsand/orsistersandbrothers
evenwhentheyaremarriedandhavefamiliesoftheirown. Afewparticipantswhose
familieswerenotintheUnitedStatesreportedgettingsupportfromclosefriendswhoare
alsoHispanics/Latinos.
Thevastmajorityofparticipantsnotedthatthereisnomechanismwhichprovides
Hispanic/Latinocancerpatientswithinformationaboutavailablesupportservices. In
general,theyfeelthathealthcareprovidersshouldbeprovidingthemwithinformationon
cancerservicesandmaterials,oratleastreferringthemtoplaceswheretheycangetit.
Themajorityofparticipantswouldliketoparticipateinsupportgroupsiftheywere
availableinSpanish. TalkingtootherHispanic/Latinocancerpatientswouldhelpbreak
theirsenseofisolation,givingthemanopportunitytosharecommonexperiences,
exchangeinformation,andprovideandreceiveemotionalsupport. Someindividuals
notedthatsupportgroupsshouldalsobeavailableforfamilymembersandclosefriends
whotakecareofcancerpatientsbecausethesepeoplesufferalongwiththepatient.
Severalgroupparticipantswerereceivinghelpfromsocialworkersreferredtothemby
theirhealthcareproviders. Thesepatientsweregenerallypleasedbecausethesocial
workershadreferredthemtoplaceswheretheycouldobtainmoreinformationand/or
othersupportservices.
Onlyafewfemaleparticipantshadreceivedprofessionalcounselingservicestohelpthem
copewithcancer. Oneindicatedthathercounselorhadsavedherlifeaftershetriedto
commitsuicidefromhercancer-relateddepression. Manywomenandonemansaidthat
theywouldliketoreceivecounselingservicesbuthavenotseenthemavailableinSpanish.
MediaUsageandPreference
ThemajorityofparticipantsprefertheSpanish-languagemedia,withSpanish-language
televisionbeingthemostpopularmediachannel. Newscasts,soapoperas,talksshows,
newsmagazineshows,andvarietyshowsarewatchedmostfrequently.
Spanish-languageradiotalkshowsthatfocusonhealtharealsoverypopularamong
participants. Theseshowsaredescribedasbothinformativeandinteractivebecausethey
allowthepublictocallinwithquestionsonhealthissues. Thehostsoftheseprogramsare
generallylocalHispanic/Latinophysicianswhoareverywellknowninthecommunityand
useavarietyofchannelstodisseminatetheirhealthmessages. Someoftheshowsalso
promotetheuseofnaturalmedicineandfolkremedies.
Printmediaarenotusedonaregularbasisbymostparticipants. Nevertheless,some
participantsreadSpanish-languagecommunitynewspapersforlocalnewsand
entertainment. Afewparticipants,mostlywomen,enjoyreadingSpanish-language
magazinesonaregularbasis.
