Andersons pediatric cardiology 2052

stressdisorder(PTSD)laterinlife,219–220whichmayindependentlyaffectthe
familyfunctioning,childself-image,andchild-rearingschema.Attentiontothis
important,modifiableriskfactorforlaterneurodevelopmentbothintheinpatient
andoutpatientsettingsholdspromiseforimprovementinourpatientswith
cCHD.

FIG.76.3 (A)Potentialinteractionsbetweencomplexcongenitalheart
andbraindisease,itstreatment,andparentalandpatientoutcomesinthe
infant.(B)Potentialinteractionsbetweencomplexcongenitalheartand
braindisease,itstreatment,andparentalandpatientoutcomesinthechild.
ADHD,Attentiondeficithyperactivitydisorder;cCHD,complexcongenital
heartdisease.(FromWernovskyG,LichtD.Neurodevelopmental
outcomesinchildrenwithcongenitalheartdisease:whatcanweimpact?
PediatrCritCareMed.2016;17[Suppl1]:s232–s242.)


FIG.76.4 Progressionofmultiplefactorsrelatedtoadverse
neurodevelopmentand“thefragilechild”followingaprolongedintensive
careunitstay.(FromWernovskyG,LichtD.Neurodevelopmental
outcomesinchildrenwithcongenitalheartdisease:whatcanweimpact?
PediatrCritCareMed.2016;17[Suppl1]:s232–s242.)

ParentsofchildrenwithCHDandacquiredheartdiseaseareatincreasedrisk
forstress,anxiety,andfeelingsofpowerlessnessrelatedtothefinancialand
emotionalburdenoftheirchild'sdisease.221Inaprospectivestudyofmothers
whosechildrenunderwentCPBforCHD,16.4%metcriteriaforaPTSD
diagnosisattimeofhospitaldischarge,while14.9%continuedtoexperienced
PTSDsymptoms6monthsfollowingdischarge.222PTSDisalsoprevalent
amongparentswhosechildrenunderwentahearttransplant,with39%
experiencingmildtomoderatePTSDsymptomsand19%meetingdiagnostic
criteriaforaPTSDdiagnosis.223Caregiverandfamilywellbeingshouldbe

addressedduringinterdisciplinarymedicalrounds,bytheunitsocialworkeror
psychologist,andduringfollow-upoutpatientcardiologyevaluations.Caregivers
shouldbeprovidedinformationaboutsupportgroups,counselingservices,and
recommendedwebsitestolearnmoreabouttheirchild'smedicalconditionand
thesupportservicesavailabletothem.

MentalHealthinthePatient
Itiswelldocumentedthatchildren,adolescents,andadultswithCHDstruggle
withincreasedlevelsofmentalhealthandpsychiatricsymptoms.Inarecent
studyofadolescentswithsingle-ventricleCHD,65%hadalifetimepsychiatric


diagnosiscomparedto22%ofhealthyadolescents.224IntheBostonCirculatory
ArrestStudy,adolescentpatientswithd-TGAhadahigherprevalenceof
attention-deficitand/orhyperactivitydisorderwhencomparedtotheirhealthy
peers.225Mentalhealthconditionsarealsoseeninpatientswithimplantable
cardioverter-defibrillatorswho,likepatientswithCHD,havesignificantlyhigher
levelsofanxietywhencomparedtohealthypeers.226Psychiatricdisorders
continuetoimpactthedailylivesofadultslivingwithCHD.Inacross-sectional
studyof280adultswithCHDwhocompletedaself-reportmeasure,50%met
diagnosticcriteriaforanxietyordepression.227Asmedicalprofessionals,itis
essentialthatwecareforthephysical,emotional,andpsychosocialwell-beingof
ourheartpatients.

SiblingEffect
Siblingsofchildrenwithchronichealthconditionshaveahigherlikelihoodof
depression,socialisolation,guilt,disruptivebehaviors,andpoorerQOL
comparedtotheirpeers.228–230Thisisrelatedtothewellsibling'slackof
knowledgeoftheirsibling'scondition,separationfromtheirfamilydueto
frequenthospitalizations,financialstressors,andfearoftheirownpersonal

mortality.Whilethereislimitedresearchintotheeffectsonwellsiblingsof
patientswithCHD,itisimportantthattheirpsychosocialneedsaremetinside
andoutsideofthehospitaltosupporttheiroverallwell-being.During
hospitalizationsandclinicvisits,theChildLifeSpecialistcanbeutilizedto
educateandsupportthewellsibling.231ImplementationofaChildLife
Specialisthasbeenshowntoreducelevelsofanxietyinthewellsiblings.Camps
canalsohaveapositiveinfluenceonimprovingthediseaseknowledge,selfesteem,andconfidenceofwellsiblings.Thecampenvironmentallowsthe
siblingstobeinasupportiveenvironmentwheretheycanreflectuponandshare
theirownexperiencesamonglikepeers.232–233