Andersons pediatric cardiology 2150
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thatareoutofproportiontotheclinical“objectiveseverity”andmayaffectthe
patient'spsychologicalstate.10,11Psychosocialoutcomesareinherently
subjectiveinnature.Theperspectiveofthechild,thefamily,andthe
implicationsforsocietymustallbeconsideredindividually.
TheChild
DevelopmentalApproachtothe
PsychologicalStressofPediatricCardiac
DiseaseandItsTreatment
Thestressassociatedwiththediagnosisandtreatmentofcongenitaloracquired
pediatriccardiacdiseasewillvarybothwiththetrajectoryoftheillnessandthe
developmentalstageofachild.Chronicillnessesarecharacterizedbyrelatively
stableperiodsthatmaybeinterruptedbyacuteepisodesrequiringmedical
attentionorintervention.Itisrecognizedthatchildrenwithcardiacdiseaseareat
riskforawiderangeofcognitiveandneurodevelopmentalimpairments(see
Chapter76).Thustheymaynotexhibitage-appropriateresponses.Interventions
toreducestressmustbetargetedtothelevelofthespecificdevelopmental
maturityofthechild.
Itisdifficulttoassessthepsychologicalstressexperiencedbysickneonates
andyounginfants,butthesettingofintensivecarerequiredfortreatmentis
clearlyanunnaturalenvironmentwithmanynoxiousstimuli.Hospitalizationand
surgeryrobaninfantofmanyofthenormalexperiencesknowntofosteroptimal
growthanddevelopment,includingthephysiologicalprotectionofferedby
parents,normaltouchandneurologicstimulation,andbasicsatisfactionofneeds
(e.g.,feedingandnurturance).12Painfulinterventions,excessivenoiseandlight,
sedation,andpresenceofmultiplecaregiversarecommoninintensivecare.Of
equalconcernisevidencethatanestheticagentscommonlyusedtoprotect
infantsfrompainduringsurgery,suchasketamine,isoflurane,andnitrousoxide,
mayalsohaveanegativeimpactonneonatalcerebraldevelopment.13–15A
modelfordevelopmentalcarehasbeenadvocatedinmostneonatalandintensive
caresettingstoreducetheinherentrisksofhospitalization.Thismodelpromotes
minimalhandling,reductionofnoiseandlight,supportofnaturalpositioning,
andindividualizedcareplanningwithafamily-centeredapproach.16–18
Inlaterinfancy,babiesbecomeincreasinglyawareoftheirenvironment.
Hospitalizationatthisstagemayimpartstressduetoseparationfromcaregivers
andtheinterruptionofnormalcomfortingbehaviors,suchasfeeding,cuddling,
andnonnutritivesucking.Sedationandphysicalrestraintsareoftenusedto
preventaninfantfromcausingharmtothemselvesduringrecovery.Aninfant
mayprogressthroughstagesinresponsetoseparationfromtheirnormal
environment.Initiallythereisprotest,manifestedbyexcessiveirritabilityand
crying.Thenthereisdespair.Thecryingmaystop,buttheinfantappears
despondentandwithdrawn,andtheremaybelossofpreviouslyacquired
developmentalskills.Ultimately,thereisdetachment.Parentalreturnmaybe
metwithapathy,theinfantappearingmoreabsorbedwithobjectsandthe
immediateenvironment.19Infantsexperiencingprolongedhospitalizationsareat
increasedriskfornegativeresponsesinthelongterm.Europeanlongitudinal
researchhasshownafter20andeven30yearsoffollow-up,thenumberof
hospitalizationsandtheresultsofthefirstcardiacsurgerywerepredictiveof
long-termbehavioral/emotionalfunctioninginadults.Theimpactof
hospitalizationininfancyandearlychildhoodshouldnotbeunderestimated.20,21
Ashifttowardroominginandallowingunlimitedparentalpresenceinmost
settingshelpstodiminish,butcannoteliminate,thisstress.Promotinga
homelikeenvironmentwithfamilyphotosandfamiliarobjectsmayreducethe
disruptiveeffectsofhospitalization.
Thetoddlerandpreschool-agedchildareextremelysensitivetoseparation
fromparentsandintrusionsbystrangers.Painfulproceduresaremetwith
vehementprotests,andthechildmaybeconfusedbytheinabilityoftheparents
torescuethemfromwhatseemsatreacherousenvironment.19Refusaltoeator
takemedications,orexcessivecombativeness,mayreflecttheattemptofthe
youngchildtoregaincontrolofhisorherenvironment.Illnessorhospitalization
maybeperceivedaspunishmentforsomethingtheyhavedonewrong.
Opportunitiesformedicalplayandsocializationwhilehospitalized,guidedby
childlifespecialists,mayhelptodecreasefearandanxiety.Safeplaces,suchas
playrooms,mustbeestablishedinthehospitalwherethechilddoesnothaveto
fearprocedures.
Childrenattendingprimaryschool(age6to12years)haveanimmature
understandingoftheirbodyandcardiacdisease.Hospitalizationandsurgeryat
thisagemaybeparticularlyupsetting,invokingfearsofbodilyinjuryanddeath.
Childrenmaybefrustratedbytheinabilityoftheirparentstoshieldthemfrom
whattheyinterpretasdangerousorpainfulinvasionsoftheirbody.Childrenat
theseagesshouldbeallowedtoparticipateindecision-makingregardingsome
aspectsoftheircare(e.g.,tohaveachesttuberemovedinaprocedureroomor
attheirbedside).Thisprovidesasenseofmasteryandcontrol.Astopreparation
forprocedures,virtualrealityexposure,appsande-Healthtoolsmayoffer
possibilitiesforchildrentogettoknowoperationalprocedures,whichmay
