Andersons pediatric cardiology 272
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HowPhysiciansRelayInformation
ImpactsWhatIsHeardandUnderstood
byParents
WrittenInformationandResources
Thefetalcardiologyteamcanamelioratethesefeelingsofpowerlessness
throughtheprovisionofaccurateinformationgivenintermsthatcanbe
understoodbythecouple,encouragingquestionsandempoweringfamiliesto
obtainfurtherinformationfromothersources(suchasleaflets,reliablewebsites,
andthroughintroductionstootherfamilieswithsimilarexperiences).Providing
informationintheparent'snativelanguagemayhelpimproveunderstanding
(Box12.1).
Box12.1
ResourcesforParents
DiagnosisandTreatmentInformation
AmericanHeartAssociation
AboutCongenitalHeartDefects:
/>Congenital-Heart-Defects_UCM_001217_Article.jsp(English,Spanish,
Chinese,Vietnamese)
CovePointFoundation,HelenB.TaussigChildren'sHeartCenter,Johns
HopkinsUniversity
Interactivediagramsshowingthenormalheartvs.multiplecongenitalheart
defects,tests,andsurgicalprocedures:(English,
Spanish)
CentersforDiseaseControlandPrevention
CongenitalHeartDefectInformation:
(English,Spanish)
ParentInformation
CongenitalHeartDefectResources
Parentresourcesincludingquestionstoask,andhandoutsandformsfor
emergencies,hospitalstays,andschoolissues:
ParentCenterHub
Explanationsofdevelopmentaldelays,EarlyInterventionServices,and
IndividualizedEducationPlans: />ResourcesinSpanish: />LittleHeartsMatter
InformationandsupportforsingleventriclepatientsintheUnited
Kingdom: />
PubliclyReportedOutcomesData
NationalInstituteforCardiovascularOutcomesResearch
SurgicaloutcomesdataforpediatricheartsurgicalcentersintheUnited
Kingdom: />SocietyofThoracicSurgeons(Sts)PublicReportingOnline
VoluntaryoutcomesdatafromparticipatingcentersintheSTSCongenital
HeartSurgeryDatabaseintheUnitedStates:
/>ManycouplesusetheInternet,socialmedia,andsupportgroupstogather
information,gainsupport,andfeellessisolated.Thefearofnotremembering
theimportantandoftencomplexdetailscoveredintheinitialconsultationcanbe
assuagedthroughtheprovisionofdiagrams,leaflets,andscanreportstohelpthe
coupletodigestinformation,understandtheirbaby'scondition,communicate
detailstofamilymembers,andmakecouplesfeelabletomakeinformed
decisions.
AvoidingAmbiguousTerms
Asurveyof841parentsgivesunprecedentedinsightonhowtheyinterpretedthe
informationreceivedfromphysiciansatdiagnosis,howtheyviewedthe
physicians’demeanor,andthereasonswhymanysoughtsecondopinions.26
Counselorsshouldunderstandthatcertaintermscanleadtomisunderstanding.
Forexample,parentsintheUnitedStateswerefoundtoofteninterprettheterm
“rare”asmeaningthattheirchildisunlikelytosurviveandthattherearefewor
nootherfamilieswithwhichtoconnect.26Werecommendthatifoneusessucha
term,itisimportanttoqualifyitwithastatementsuchas“becauseweworkina
specialistreferralcenter,weseexnumberofsimilarcasesperyear,operateonx
number,andwouldexpectxproportiontosurvive.”Volumeandsurvivalrates
forotherexperiencedcentersshouldalsobegiventothefamilyforaframeof
reference,ifitwouldbefinanciallyandpracticallyviableforthecoupleto
chooseforcaretobetransferred.Misinterpretationsofterminologymayvary
dependingonthecountry,language,and/orculturalbackgroundoftheparents.
Counselorsneedtobecognizantofthepotentialformisunderstandingsandnot
utilizeambiguousorconfusingterminology.
PhysicianDemeanor
Ifthegestationalageisappropriateforofferingpregnancyterminationfor
significantCHD,itshouldbeoffered;however,someparentsfeelthatwhenthe
physiciandiscussestheoptionofterminationofpregnancy,theyarebeing
pressuredtochoosethisrouteorthatitisbeingrecommended.25,38HiltonKammfoundthatfeelingpressuredtoterminatethepregnancywasassociated
