Andersons pediatric cardiology 1893

understandingofprogramrationaleandgoals.Providersmustdevelopaclear
understandingofindividualizedneedsforeachfamilyandtailordischarge
preparationtopromotesuccess.39Parentingstressisprominentinfamiliescaring
forchildrenwithallformsofcongenitalheartdiseaseandevenincreasedfor
parentscaringforchildrenwithafunctionallyuniventricularheart.40–42Thus
barriersforsuccessfulimplementationofaninterstagehomemonitoring
programareideallyidentifiedpriortodischarge.Familiesofchildrenwitha
functionallyuniventricularheartreportvaryinglevelsofstress,particularlyat
timeofdischargetothehome.13Parentalchallengesandstressorsmayinclude
languagebarriers,educationallevel,familysupport,socioeconomicburdens,and
emotionaldistress,includingfeelingsoffear,depression,orfatigue.13,40Anyof
theseissuesmayaffectafamily'sreadinesstolearnandtheirabilityto
successfullycarryouthomemonitoringandinterstagecares.Identifiedbarriers
warrantadditionalsupportfromthecardiacteam,socialworkers,psychologists,
orparentsupportorganizations,asavailable.Ethnicityandsocioeconomic
factorshavebeenassociatedwithinterstagemortality.6,21,43Enrollmentina
homemonitoringprogramhaseffectivelyreducedinterstagemortalityacross
varyingsociodemographicpopulations.3,6
IterativeparenteducationthroughoutthestageIpalliationhospitalstayis
importantforretentionandmasteryofskills,aswellasanticipatorypreparation
forcommonlyencounteredinfantchallengesthatmayinfactdestabilizethose
infantswithadual-distributioncirculation.39Toolssuchasdischarge-teaching
checklistsforparentsandprovidersorvisualdiagramsdepictinglearningneeds
andreferredtoas“steppingstones”or“journeyboards”(Fig.72.3)providea
family-friendly,coordinated,andstandardizedmeansoftrackingthedischarge
planningprocess.Thestrategyofhavingparentsparticipateinanextended
periodof“rooming-inwithoutmonitors”or“24-to48-hourcare”isavaluable
strategyoftenusedjustpriortodischarge.Thisexerciseaffordsparentsthe
opportunitytoconfirmalevelofcomfortperformingdailytasksandmimiclife
athomewhilestillhavingprovidersavailableforconsultation.Inaddition,this
experiencecanensuretheproviderteamofparentcompetenceand/oridentify

areasofcarewithwhichparentsneedadditionalreassuranceortraining.


FIG.72.3 Visualdiagramdepictinglearningneeds(referredtoas
“steppingstones”or“journeyboards”)designedtoprovideafamily-friendly,
coordinated,andstandardizedmeansoftrackingthedischargeplanning
process.(CourtesytheNationalPediatricQualityImprovement
Collaborative.)

TransitionalCare
Carecoordinationfromtheinpatienttooutpatientsettingisvitaltocontinued
well-beingduringtheinterstageperiod.Thistransitionofcarerequiresclear
communicationbetweenproviders,includingreferringcardiologists,primary


careproviders,andothersubspecialistssuchasgastroenterologists.16The
absenceofcomprehensiveandeffectivecommunicationbetweenhealthcare
providerscannegativelyimpactpatientoutcomes.
Identificationofadischargecoordinatorwhotakesprimaryresponsibilityfor
overseeingthedischargeprocessminimizespracticevariationandaidsinthe
carecoordinationeffortsnecessarytoensureasafetransitiontohome.This
responsibilityoftenfallsonadvancepracticeproviderswhoserolesoverlap
inpatientandoutpatientcare.Vitalcomponentsfortransitionalcareareoutlined
asfollows:

■Identificationofaspecificteammemberto
coordinatethedischargeprocess.
■Useofastandarddischargechecklisttoensure
completionoftasks(Fig.72.4).