Andersons pediatric cardiology 2149
Bạn đang xem bản rút gọn của tài liệu. Xem và tải ngay bản đầy đủ của tài liệu tại đây (124.49 KB, 3 trang )
PsychologicalandSocialAspectsof
PediatricCardiacDisease
KathleenMussatto,ElisabethM.W.J.Utens
Abstract
Dramaticallyimprovedsurvivalandreducedmorbidityforvirtuallyall
formsofpediatriccardiacdiseasehavenowshiftedfocustothequestionof
qualityasopposedtoquantityoflife.Thecumulativeeffectsofthestressof
pediatriccardiacdiseasemayimpactonpsychosocialfunctionandquality
oflifeforthechild,parents,siblings,andotherfamilymembers.
Keywords
Qualityoflife;Mentalhealth;Socialadjustment;Family;Siblings;Child
development;Parents
Introduction
Whatoutcomesreallymattertopatients,families,andsocietieslivingwiththe
implicationsofcongenitalandacquiredpediatriccardiacdisease?
Survivalandphysiologicfunctionarecertainlyparamount.Dramatically
improvedsurvivalandreducedmorbidityforvirtuallyallcongenitaland
acquiredpediatricheartlesionshavenowshiftedfocustothequestionofquality
versusquantityoflife.Thepatientswhomwefollowarenot“hearts”;theyare
childrenandyoungadults,incrediblycomplexandmultidimensional,andthey
belongtofamiliesofequalcomplexity.Chronicillnessinachildresultsin
psychologicalstress,notonlyfortheaffectedchildbutalsofortheparents,
siblings,caregivers,andsocialcontactswithwhomthatchildinteracts.The
cumulativeeffectsofthestressofpediatriccardiacdiseasemayimpact
psychosocialfunctionandqualityoflifeforthiswholespectrumoffamilialand
socialcontacts.Thecomplicatedprocessofadjustmenttothisstressinvolvesan
interactionofbothriskandresistancefactorsand,aboveall,ahighlysubjective,
personalinterpretationoftheimpactofdiseaseonone'slife.
Ingeneral,childrenandfamiliesareincrediblyresilient.Theyrespondtothe
challengesofchronicdiseasewithaprocessofadjustmentandadaptationthat
mostcommonlyresultsinsuccessfulnormalizationandintegrationintosociety.
Whenthisprocessdoesnotoccursuccessfully,ahostofproblemscanresult,
includingpsychopathology,reducedqualityoflife,familydisruption,andsocial
issues.1–5Providersofhealthcaretochildrenwithpediatriccardiacdisease,as
wellasothersocialcontactssuchasteachers,socialworkers,andplaytherapists,
areinauniquepositiontoassessandintervenewiththeintentionofoptimizing
theadaptationofthechildandthefamily.
Currently,thevastmajorityofcongenitalcardiacconditionsarediagnosedin
theantenatalperiodorearlyinfancy,andthemajorityofsurgicalreconstructive
proceduresareconductedduringthefirstyearoflife.6–9Onlyasmallportionof
congenitalcardiacconditionsarecompletelycureddespiteanatomicrepair.In
themajorityofpatients,particularlythosewithcomplexlesions,thecardiac
malformationresultsinachronicconditionthatrequiresongoingmedical
monitoringandintervention.Incontrast,acquiredpediatriccardiacdiseaseina
previouslyhealthychildcanbediagnosedatanyage.
Thenatureoftheheartasanorganvitaltosurvivalmayresultinperceptions
