Justyna Deręgowska, Ph.D.
CollegeofHumanitiesandJournalism
soCIal suPPort anD the ProsPeCts of soCIoPsyCholoGICal DeveloPment of ChIlDren wIth onColoGICal DIsease
Children and their oncological Disease – an outline
Althoughrecentyearshavebroughtvastadvancementsinchildren’soncol- ogyandhematology,oncologicaldiseasescontinuetobethesecondmostimpor- tantcauseofdeathofchildrenandyouthsbothinPolandaswellasabroad�
Everyyear1500childrenarediagnosedwithcancerwhichkills300ofthem�
Eachyear2200childrenundergochemotherapyand6000requireclosefollow- up�Therearefarmorechildrensufferingfromthediseasethantheonesthatare
actuallydiagnosedwithit(Tojza,2003)�Themostfrequenttypesofcancerthat
childrenarediagnosedwithareleukemia(35%),tumorslocatedwithinthecen- tralnervoussystem(22%)andlymphangiomas(10%)(Binnebesel,2003)�
Unfortunately,over8%ofpatientswithapparentlycureddisease,sufferfromre- currencewithin20years�(Kowalczyk,Samardakiewicz,1998)�
According to the definition suggested by the Commission of Chronic
Diseases,adiseaseisqualifiedasachroniconewhenitinvolves“anydysfunc- tionsanddeviationsfromthenormalwhicharepermanent,causedisability,is
causedbyirreversiblepathologicalchanges,requiresspecialrehabilitationorthe
patientssufferingfromitmightrequirealong-termfollow-up,observationand
care”�(Adamczak,1998,p�11)�Thusanoncologicaldiseasemightbeclassifiedas
achroniconeasithasitscharacteristiccourseandcarriesariskofimmediateor
long-termcomplications�
Nowadays,children’soncologicaldiseasesareconsideredinnumerousas- pects�Inthebiologicalone,thediseasecausesanatomicalchangesofparticular
organsanddistortstheirphysiologicalfunctions�Fromthemedicalpointofview,
thisconstitutes“adistortionofthefunctionsoftheorganismanditsregulatory
mechanisms”(Gomułka,Rawerski,1995)�Psychologicalconceptstreatthedis- easeas“aneventintheprocessofdevelopment”,thesourceoffrustrationwhich
makesitimpossibletosatisfythemostbasicneeds,releasingnegativeemotional
reactions,weakeningcognitiveactivity,delayingtheprocessesofsocialization
and threatening psychological, physical, social and intellectual development
(Skorny,1986,Obuchowska,Krawczyński,1991)�Cancermayalsohaveapsy- chologicalaspectasitcarriesterriblesuffering,changesthewaythechildper- ceivesandevaluatesmanyeverydayissues,causesbodilypainandalterstheway
thesickchildreactstoallthesedifficulties(Kulmatycki,2008)�
Developmental Disorders and Disability as Consequences of oncological Disease and Its treatment
Developmentalpsychologydefinesdevelopmentas“alongtermprocessof
structuredandprogressivechangesleadingfromlower,simpleandlessorganized
formsandstates,tothehigher,morecomplexandbetterorganizedoneswhich
aimsatbalancingtheindividual’srelationshipswithitsenvironment”(Pilecka,
2011,p�25)�
Inviewoftheabove,thedevelopingorganismofachildshouldaimatreflect- ingthesurroundingworld,itsindividualityaswellastherelationsbetweenthe
two�Atthesametime,thedevelopmentshouldaimatobjectivizationofcognition
andautonomizationofactivitieswhich,intime,shouldbemoreandmoreinter- nally controlled (Pilecka, 2011)� However, when taking into account the close
bondsbetweenhealth,diseaseanddevelopment,itbecomesclearthatthespe- cificsoftheoncologicaldisease,itscourseandtreatmentreachfarbeyondthe
limitsofachild’semotionalimmunity�Inmostchildren,thediseasedestroystheir
fundamentalabilitytoadapttounfavorablecircumstanceswhichissoimportant
forachild’scorrectdevelopment�Cancerdistortsallthespheresoflife–thebio- logical,thepsychologicalaswellasthesocialandspiritualones�
AsEiser’s,Hille’sandVance’sresearchshow(2000:Pilecka,2011),30%
ofchildrenwithcancerclearlydonotcopewiththerequirementsandlimitations
whichresultfromthedisease�Asaconsequence,thechildrenexperiencemajor
difficultieswiththeirsocialandemotionallife�Theiracademicresultsareusually
worsethantheirhealthypeers’�Theyareunabletoenterintocloseandpermanent
peerrelationships�
Thedevelopmentalcostsbornebychildrenwithcancerarenotonlycaused
bythediseaseitself;alsothetroublesomeandunpleasanttreatmentnegativelyin- fluencestheirdevelopment�Thismayleadtodevelopmentaldisordersandevento
disability,i�e�thefunctionsoftheirorganismsdeterioratewhichlimitsoratleast
makesitdifficulttofulfillthechild’ssocialroles�Thelimitationsmayaffectthe
child’sphysicalfunctionsaswellasthepsychologicalones�Thedisabilitymaybe
temporaryorpermanent�Itcanhaveaprimarycharacter,whichresultsfromthe
diseaseitselfandwhichnegativelyaffectsthechild’sphysicalandpsychological
stamina;thedisabilityaffectseitherthecentralortheperipheralnervoussystem�
Thedisabilitymayalsobeofasecondarycharacterwhenitresultsfromthepatho- logicalchangeswithinthechild’sorganism�i�e�fromgeneraldysfunctionsofthe
bodywhicharecausedbytheprogressingdisease�
Unfortunately,allthecancertreatmentproceduresburdenthepatient’sorgan- ism�Cytostaticsusedinchemotherapyhavenumerousneurotoxicsideeffects;
theydestroycentralandperipheralnervoussystemswhichmayimpairintellec- tualdevelopment�Chemotherapymaycausevegetativesymptoms,hearingim- pairmentandslowdownpsychologicalandmotorreactions�Radiationwhichis
usedinoncologicalradiotherapycausesunpleasantsideeffectssuchasnausea,
vomiting,skinlesionsandhairloss�Radiationofthebraincausesdeteriorationof
intelligencelevelsbyonestandarddeviationwhichdistortsintellectualdevelop- ment�Hormonotherapydoesnotonlycauseendocrinologicalproblemsbutalso
veryadverseneurologicalcomplicationsaswellasnumerouscomplicationsof
circulatorysystem,breathing,digestivesystem,boneandmusclesystemaswell
asitmaybedestructivetomanyorgansofthebody�Moreover,surgicalproce- dures which are sometimes necessary to remove the cancerous tissue together
withasafemarginofthehealthytissueandelementsoflymphaticsystem,may
callforremovingapartorthewholeorgan�Theremayalsobeproblemswith
healingofpost-operativewounds(Nyka,Dziewulska–Bokiniec,1997)�
Most frequently cancer treatment is a combined treatment which involves
allthepossiblemethods�Thiscallsforinterdisciplinaryandinvasiveapproaches
whichinanycasecausethechildalotofsuffering(Kowalczyk,2006)�Thecom- binedtreatmentincreasestheriskofdevelopmentaldisorderswhichmayappear
asacuteeffects,likesomesomaticsideeffects,aswellasthesub-acutesymptoms
andthedelayedeffects�Thelatterincludedecreasedlevelofintellectualdevelop- mentaswellasneurologicaldeficienciesmanifestedbydeteriorationofshort- termmemory,difficultieswithconcentration,dysfunctionofmotorandpercep- tionfunctions,inadequatemathskillsandlearningdifficulties�Thedelayedeffects
mayrevealthemselvesseveralyearsafterthetreatmentiscompleted(Pilecka,
2011)�Allthesecausedifficultiesinsociallifeandleadtonumerousfailuresin
thefuture(Buczyński,1999,Pietrzyk,2001)�
Although cancer and its treatment expose the child to permanent changes
which are caused by radical surgical procedures, a time-consuming treatment,
possible relapses and acute attacks of the disease, it must be stressed that the
permanentpathologicchangesdonotonlyoccurinthechild’sbodybutinits
psychologicalsphereaswell�Theyaffectsomestructuresofpersonalityandits
socialadjustmentabilities�
Themereinvasivenessofthetreatmentexposesthechildtolonglastingpsy- chicalpainbutalsothespiritual,psychologicalandsocialsuffering�Thetime- consumingtreatmentinvolveshospitalregimensandisolationfromthechild’s
naturalpedagogicalenvironment,itsfamilyanditspeerswhichthechildfinds
extremely difficult to accept� Moreover, cancer treatment exposes the child to
manydifficultsituationsresultingfrommedicalprocedures,completelynewliv- ingconditionsandactivity�Theyoungpatientsuffersbecausetheremaybediffer- entsituationsrelatedthetheprogressoftreatmentorthelackofit(Maciarz,1998,
Tojza,2003)�Inconsequence,thediseasepermeatesanddistortsallthespheresof
thechild’slifeanddevelopment;itbecomesathreattotheprocessofshapingits
personality�Itevokesthefeelingofbeinginastateofmenace,stressandphysical
oremotionalstrain�
Anotherproblemrelatedtooncologicaltreatmentislengthyhospitalization
whichdeprivesthechildofmanyneedsandcausesthesocalledhospitalismsyn- drome�Thisismanifestedbyslowerphysicalandpsychologicaldevelopmentas
wellasemotionalapathy�Clinicalimageofthissyndromeinvolvesaggression,
avoidanceandisolationaswellaslong-termeffectsintheemotionalandmoti- vationalspheres:hypersensitivity,emotionallability,reactingwithfeartonew
situations,resentment,decreasedself-control,depressivebehaviorAllthesewhen
combined,constituteaseriousriskfactorwhichmaymanifestitselfinthechild’s
socialfunctioning�
Tosumup,oncologicaldiseasecreatesaveryunfavorablecontextforthe
youngpatient’sdevelopment;itisariskfactorinallofitsareas�Itisresponsible
forthequalityandquantityofchanges�Theresultsofthediseaseandtreatment
areseenasuniquedeficienciesthataffectmanyspheresoflife�Someofthem
maybeminimizedbyspecialistpharmacotherapyorphysiotherapy,mostresult
inpermanentdysfunctionsispsychosomaticsphereandsociallifeofthechild�
Theeffectsinfluencetheiracademicresultsandfuturelife�Evenifthetreatment
provestobeeffective,thechildfreedfromthedisease,foreverremainsaperson
whosuffersfromphysical,psychologicalorpsychophysicaldisability�
minimizing the negative effects of the oncological Disease on the Child’s Development – a Postulative status
As biological determinism is currently becoming less popular, the disease
isperceivedasabiologicalandsocialphenomenon�Inaddition,theunfavora- bleeffectsofcanceranditstreatmentonthechild’sdevelopmentarestressed�
Therefore,attentionisdrawntothenecessitytointroduceauxiliarytreatmentand
minimizingthenegativeeffectsoftherapybyofferingsystematicandplanned
psychologicalandsocialsupporttotheyoungoncologicalpatient�Thechild’s
problemsmustbeconsiderednotonlyinthecategoriesoffamilyandhospital
environmentasthesetwocontextsconstituteintertwinedlayersofthechild’slife
andtheydefinitelyinfluenceitslifeinthefuture�Theimportanceofpropercare,
pedagogicalandtherapeuticactivitiescannotbeunderestimatedinpreventingthe
negativeeffectsofthediseaseonthechild’sdevelopment�Whatisneededisthe
patient’sactiveparticipationintheprocessoftreatment�Alltheirpsychological
needsmustbesatisfied;theymustbetreatedwithdignityandapproachedonan
individualbasis�Anysupportofferedtothemneedstobecomposedofpreventive
andreparatorymeasures(Samardakiewicz,2011)�
TheaboveaspectsareincludedinthestandardspreparedbySIOP(International
CommitteeonPsychosocialIssuesinPediatricOncology)of1991defininghow
totreatthepatients(Kowalczyk,Samardakiewicz,1998)�
Therecommendationsconcernthefollowingareas:
– psychosocialcareandsupportgiventothepatient;
– educationalissuesandteachingchildrenwithcancer;
– communicatingthediagnosis;
– cooperationbetweenparentsandhealthcarepersonnel;
– accompanyingthechildintheterminalperiodofthedisease;
– theissuesrelatedtothechild’shealthysiblings;
– counteractingtheprofessionalburnoutsyndrome;
– extendingcareoverthesurvivors�
In2000,inPolandanationalresearchprogramwasstartedwhichaimsat
introducing the methods of psychosocial support offered to children with can- cer�ThemethodologywaspreparedbySIOP�Awidescopeofpsychosocialsup- portwassuggested;itofferedpsychologicalaidtoeverysickchild,suggested
doingpsychologicalresearchanddocumentingtheassistanceaswellasoffer- ingpsychologicalinterventions�Moreover,inthecentersofpediatriconcology
andhematology,auniformmodelofcommunicatingthediagnosistothechild
anditsparentswasassumed�ThePolishGroupofPediatricPsycho-oncologists
foundedinSeptember2006onthedecisionofthePolishAssociationofPediatric
OncologistsandHematologistsstartedtomonitortheprogramofsupportingthe
developmentofchildrenwithoncologicaldiseases(Samardakiewicz,2011)�
supporting a Child with Cancer in light of Current research studies
DespitethefactthatinPolandtherearecurrently17specializedpediatrichematologyandoncologycenters,notalltheelementsofpsychosocialsupport
haveyetbeenstarted�Andeveniftheyhave,theyarenotalwaysadequatetothe
patients’needs�Theaboveisbasedontheresearchcarriedoutonpediatrichema- tology,oncologyandtransplantologywardsinamajorclinicalcenter�
Theresearchfocusedmainlyoncrisissituationswithinthefamilyandman- nersofcopingwiththecrisis,showedthatthereisalsoaneedtosupporteachfam- ilymember,andespeciallytheyoungoncologicalpatient�Basedontheresearch,
areasofsocialpracticewereshownwhereintensifiedactionsneedtobetakenin
supportofthepatientonallstagesofthedisease�Theseincludethetimewhenthe
diagnosisismadeandcommunicatedtothepatient,whenthepatientishospital- izedandathomewherethetreatmentiscontinued�
Inordertoenhancetheimportanceofthetask,theauthorquotesbelowsome
excerptsfromconversationswithyoungoncologicalpatientsandtheirparents�
social support offered to a Child at the time of Diagnosing its oncological Disease
Consideringtheresultsoftheexaminations,onemayconcludethatalthough
notallofthesuspicionsofoncologicaldiagnosisarelaterconfirmed,allofthe
childrenwhofindthemselvesinthissituationexperiencethisperiodasutterlydif- ficultandstressful�Alltheeventsprecedingthefinaldiagnosisareveryimportant
andtheemotionsaccompanyingchildrenawaitingthediagnosiscombinedwith
unfavorablehospitalenvironmenthaveadestructiveeffectonthepatient’swell
being�
Inthatdifficultperiodchildrentriggertheirdefensivemechanismssotoless- entheemotionalburdenbutatthesametimeallofthemfinditextremelydifficult
todealwiththesituation�Theonlysourceofsupportwhichreachestheminthat
periodistheirfamilysupport�Unfortunately,itisinadequate�Whatwouldbenec- essaryissomeprofessionalsupportsatisfyingtheiremotionalneeds�Thiskindof
assistanceisnotusuallyofferedatthetimethediagnosisismade�
Neitherthechildrennortheirparentsareinformedbythemedicalpersonnel
abouttheongoingdiagnosticprocesswhichmakesthetimeofwaitingforthere- sultsespeciallystressful�Moreover,inthatdifficultperiodtheyoungpatientsare
notsupportedbyaprofessionalpsychologist�Thisisimportantasthediagnostics
isusuallycarriedoutwhilethechildrenarehospitalizedandthusconfrontedwith
thesufferingofotherpatients�Thisextremelystressfulsituationisreflectedin
thefollowinginterviewwithoneofthemothers:“Themereenteringtheoncol- ogywardandmyfirstmomentstherewerehorrible�Whatyousometimesseeon
TVisnothing,doesnotcomparetotherealitythere�OnTVeverythinglooks…
well,notbad�Butmyhusband,mydaughterandmesawthatquitedifferently���
Thechildrenwerelockedupinsmallrooms,theirheadscompletelyhairless…
therewerepipesandtubeseverywhere,IVdropsconnectedand,ohGod,how
theyvomited�Itwassovery,verysadandhorrible;weweresodepressed�Iam
generallyapositiveandoptimisticpersonbutthatview,thatatmosphere,andmy
daughterthere…IwassodevastatedthatIdidnotevenknowhowIfelt�Iguess
Iwasterrified;thefearfrozeallmybodyasifallmyinternalorgansstopped
working�AsifIfroze”�
social support offered to the Child and their Parents at the time of Communicating the Diagnosis
Anotherperiodisthetimewhenthediagnosisiscommunicatedtothechild
anditsparentswhoareaffectedbyextremelystrongstress�Theyexperiencenega- tiveemotionalreactions;theycannotmotivatethemselvestofindouttheneeded
information,theyareunabletocontroltheiremotionsorbehavior�Thesituation
breaks them down, they are “frozen”, alienated, helpless, they panic which is
aclassicalreactiontoanylossoranytrauma�Thisstateshouldimmediatelyin- spirepsychologicalinterventionbutitisnotgrantedtoanyoftheparents�Andit
shouldbeastheparents’behaviorhasaverystrongeffectonthechild’semotional
stateandperceptionofitsownsituation�
Thefollowingexcerptfromaninterviewwithoneofthemothersillustrates
themomentwhenoncologicaldiagnosiswascommunicatedtoher:“Intheroom
whentheytoldmeaboutthis,therewasnosofa,notevenachair�Ijustsliddown
thedoor…Irememberthattherewasanursewhogavemesomepills�Ifeltasif
somebodyjusttrippedme�Youcannotdescribethefeeling,itwasasiftheworld
collapsed”�
Thetimeofcommunicatingthediagnosisinvolvesnotonlythereactionsto
the disease and hospitalization but also the difficulties to adjust to these, with
ambivalentattitudesoftheadultstowardscommunicatingthetruthtothechild:
“Ayoungladydoctortoldme,theonethateverybodykindofliked,thatIshould
nothideanythingfrommychild…whatheissickwithandwhatoperationsawait
him�Thissurprisedme…‘causebeforeIhadnoticedthatotherdoctorsandnurses
didnotusetocallthediseasebyitsname,thattheywereverysecretiveaboutit�
Theysaidthatkidswerenotsupposedtoknowwhatwaswrongwiththem”�
Communicatingthediagnosistothechildornotcommunicatingitisprima- rilytheresponsibilityofdoctorsandparents�However,healthcarepersonneldo
nottakeanyconcretestandandeveniftheythinkthatthechildshouldbetold
aboutcanceranditsconsequences,theydonotofferparentsanyassistanceinthis
respect�Thedifferencesofoutlooksonthatissuearehugeandthediscrepancies
haveanegativeeffectontheyoungpatient�Oneofthemothersremembersthe
momentofcommunicatingthediagnosisasfollows:“SowhenIfoundoutthe
diagnosis,hesawmecrying…soIhadtotellhimsomething,right?Thedoctor
promisedtocomeandtalktousbutshedidnot,andhekeptaskingmewhyIwas
cryingallthetimeandhecriedtoo�Hewasweepingandweeping�Ijustcouldnot
takeit�Hewiggledandcriedtogohome,hekickedandbitme�Iwashelpless,
Iwascryingallthetime,Iwasembarrassedbythatbutcouldnothelpit,couldnot
copewithit,Ididnotknowwhattodowithhim…”
Thediagnosisisfrequentlyhiddenfromthechild�Fromitsparents’view- point,thisprotectsthechildfromanxiety,however,itfrequentlyincreasesthe
fear�Parentswanttosupportthechildbyavoidingtheconversationsonthedis- ease,bynotansweringtheirquestions,pretendingtotreatthediseaseverylightly
andgivingthechildonlythepositiveinformation�However,theydonotalways
realizethatallthatmaynothelptheirchildwhocanseethediscrepancybetween
theverbalmessageshereceivesandthenon-verbalmessageofdespairandsad- nesswhichtheygetfromtheirparents�
Itisalsonecessarytopayattentiontoteenagersastheiremotionsarenotonly
triggeredbythefactthattheymuststayinhospital,butalsobythefactthatthey
realizewhatthediseaseinvolvesandwhatitsconsequencesmightbe�Ateenage
patientisawareofthethreatsposedbythedisease�Whenthediagnosisiscom- municatedtothem,theyarefilledwithshock,disbeliefandhighlevelsofanxiety�
Frequentlyeventhemomentwhenthediagnosiswascommunicatedtothem
staysintheirmemoryforever�Theyrememberitasatraumaticexperiencenot
onlyduetothecontentofsuchinformationbutalsoduetotheformitwascon- veyed by the medical personnel� It can be seen in words of one of teenagers:
“Irememberthatthenursetoldmetogotothedoctors’room�WhenIwentin,
therewasonlythedoctorandanurse�Andthen…theyhititrightatme…They
saidIhadleukemiaandthatthiswasthefirststage…sotherewasnoneedtoget
depressed�Theykeptsayingsomethingaboutthedisease…but…Ididnothear
that�Iwasscaredandshocked�Theygavemeabooktoread(everybodygetsit)…
Ineverreadthatbook,becausewhenIstarted,IknewIwasunabletograspall
that…Iwasunabletocopewithwhatthebooksaid…”
Communicating the diagnosis to children, as Borysławska says (2002, p�
90),shouldbedoneinthesamecircumstancesasitisdonewithadultpatients�
Moreover,itshouldbeprecededwithadiscussionwhichcouldallowtoevaluate
thepsychoemotionalstate,thepatient’slevelofknowledgeandexpectations�The
authorbelievesthatthefirstmessageaboutthediagnosisshouldcomefromcom- petentpersonnel,i�e�fromthedoctorswhomadethediagnosis�Theinformation
shouldbecomplete,trueand,firstofall,welladjustedtotheintellectuallevelof
thesickchild�
Intheinitialperiodofthedisease,thechildstaysinhospitalwhichregardless
ofthepatient’sageisastressfulandchallengingexperience�Atthatstage,theat- titudetowardsthediseaseisformedasaresultofcertainemotionalandcognitive
processes�Thehospital,asacharacteristicmicroenvironment,becomesaplace
perceivedbytheyoungpatientashostileandunpleasant�Itcausesfrustration,
evokesthefeelingofdeprivation,andharmsthechild’semotionalstructure�The
childisabsolutelyhelplessinviewofthediseaseandcompletelydependenton
otherpeople�Itmusttakeonanotherroleinlife,theroleofasickperson,which
affectsallareasofitsactivity�Thechilddoesnotformdefensemechanismim- mediately�Moreover,itlivesintheenvironmentoftensionwhichitsparentsfeel�
Thelackofinformationandthesubjectivereactionswhicharefrequentlyinad- equatetothecircumstancesmakethepatientfeelthatthereisnoneedtostayin
hospital,thatthereisadefinitediscrepancybetweenwhatthechildfeelsandwhat
itsparentsdecide�Oneofthechildrensuggestivelypresentsitsownfeelingsin
theveryfirstmomentsontheoncologyward:“Whentheybroughtushere,thenit
wasimmediatelytheoncologyward…Franklyspeaking,thiswasaterribleshock
tous…hardtodescribeit…Thehairlesschildren,paleaspaper,soquiet…They
putmetobed…IfeltIwasshiveringbutIdidnotknowifthatwasbecauseIwas
soscaredorsocold,orwhat…ThefeelingwassostrangethatIcannotdescribe
it�WhatIhadseenonTVbefore���thekidswithleukemia…orhospitals,wellthat
wasjustnothingcomparedtothat��Ifoundmyselfamongsuchchildren…One
hugefear…”
Astheresearchshows,atthetimeofcommunicatingthediagnosis,thereis
noprofessionalpsychologicalsupport,letalonepsychologicalinterventionwhose
importanceisstressedsostronglybynumerouspsychologists�
Theonlysupportistheemotionalbondbetweenthechildrenandtheirparents�
Italleviatesthetraumatizingeffectofthedisease,asfamilyconstitutesanimportant
linkofemotionalsupport�Thiskindofsupport,however,isnotalwaysadequateas
theextremesituationcallsforprofessionalpsychologicalintervention�
supporting the Child During hospitalization
Oncologicalproceduresareusedtotreatchildreninvolvenumerousstaysin
hospital�Thepatients’lifeoscillatesaroundlongperiodsofhospitalizationand
shortperiodsofstayingathome�Thehospitalbecomespartoftheirlife,another
homeandtheperiodsofhospitalizationaresoimportantforthem�Theresearch
showsthat,atthetimeofhospitalization,therearemanysituationsaddingmore
traumaandofferingonlynegativeexperiencestothesufferingchildren�
Firstofall,thehospitalcircumstancesmakethepatientcompletelysubdued
tothemedicalpersonnel�Therefore,inadditiontothestressrelatedtothedis- easeitself,thechildisalsoexperiencingthesocalledhospitalstress�Thechild’s
psycheisexcessivelyburdenedandalthoughitisnotpreparedtothis,thechild
undertakesitsindividualstrugglewiththediseaseandthenewrequirementsitis
facedwith�Thefollowingopinionsoftherespondentspointtothefactthatthe
hospitalconditionsareperceivedverynegativelybothbythechildrenaswellas
theirparents:
“Ihatethishospital,theseflakingpaintonthewalls,thewindows,thebed,
Ihatebeinglockedupthere,Ihateit…”�
“Whatissoscaryhereisthefactthatyouarelockedinonesmallroom…you
arenotallowedtoleave…justthebedandtwometerstothebathroom,andthat
isit�Youcannotevensitatthetablebecauseitistoosmall�Iftwokidswanted
tositatit,toeatlunch,theplateswouldnotfitthere�Atthetable,therearejust
twochairs,sometimesthreesoyouhavetoeatyourdinnerinbed,youdoyour
schoolworkinbedtoo�Icannotreallyunderstand…thatthekidsaresolockedup
intheirrooms�Whentheyreallyhaveto,wellthatisdifferentbutnoneofthem
canleavetheirrooms,noneatall…”�
Sickchildrenfrequentlyareunabletocopewithstresswhichaffectstheiror- ganismsandweakenstheirdefensiveforces�Thenwithdrawalbeginstodominate
andcausesbadeffectsofthechild’sdevelopment,lowersitsself-esteemandgets
itridofanyplansforthefuture�Thisisfrequentlyinterpretedasadaptationtothe
newconditionsandprofessionalassistanceisnotgrantedtosuchchild�Thepa- tientexperiencesthefeelingofdisorganization,helplessness,fearandloneliness�
Itisimpossibleforthemtoexternalizethenegativeemotions�Thehospitalenvi- ronmentblocksanyexpressionofangerandsothenegativefeelingscumulate�
Thisdestructivelyaffectsthepatient’spersonality�
Thehospitalrigorforbidsthechildtogetintouchwithitssiblingswhichin- creasesthefeelingofloneliness�Asaresult,thepatientmissesthesiblingsandthe
feelingismutual�Thissituationbuildsupanxietywiththechildrenwhoremainat
home�Severalexcerptsfrominterviewswithsickchildrenillustratetheirnegative
experiencesofhospitalization:
“None of the doctors or nurses even bothered to talk to me seriously…
Idon’tknowwhattheythoughtbuttheymusthavethoughtIwasn’teventhere…
justthebottleswithchemowhichtheykeptchanging…Ifeltsobadthere,soim- personal…soempty…Theonlypeoplethatevertalkedtome,consoledmeand
explainedanythingweretheotherkidsandtheirparents…Ididn’tknowanything
thenhoweverythingworkedontheward…Itwasjust…atotalshock…”
“Hejustcrawledintohisshell,becamedepressed�Herefusedtotalkwith
anybody…didnotspeaktoanyone…neithertothedoctornortothenurses,not
eventome�Hewaseitherlyingwithhisbackturnedtomeorhekepthiseyes
closedasifhewassleeping�Hedidn’tsayasinglewordtome�Thatwasjusthor- rible’causeIdidn’tknowwhattodo�Ikeptbegginghim…Icried…Iwantedhim
togetback,Ievenyelledathim�Buthedidnotreact�Justkeptturninghisbackon
me�Nobodycametherethen�Apsychologist?Forgetit…Iwasbeggingforsome
helpforhim…Everybody,evendoctors,couldseewhatwasgoingonwithhim
butnobody…nooneeventriedtohelphimsomehow…”
“SoIspent13monthsinhospital,Ihadthosethoughts,thatitwassosad…
thatIfeltsolonely…EventhenIjustdidn’tfeelliketalkingtoanyone…Ijust
wantedtobeinbed…IpretendedIwassleeping�Andtheytreatedmelikethat�
TheyjustkeptchangingtheIVdrops,theyexaminedmebutnobodytalkedto
me,neitherthedoctornorthenurses�Notthattheywereangrywithme…they
justdidn’ttalk�Ididn’tfeelliketalkingeither,whatcouldIsay?���Idon’tknowif
thereevenwasapsychologisttoseeme�Butisdon’tthinkso�Sometimesjustthe
otherkids…Ifeltterrible,butIsomehowreturnedtomyself…IguessIregret- tedthatIwasbacktothishorribleworld�AndeversinceIhavebeenreallyfed
up…IkeeplyinginmybedandIdon’tspeak,evenifIdo,itisveryrarelyIsay
something…”
Withtime,everychilddevelopstheirownmannerofcopingwiththesitua- tion;theydevelopsomemechanismswhichmostfrequentlyinvolveaggressive
behavior,emotionallability;theybegintomistrustadultswhichmaybeobserved
intheopinionbelow�
“Oh,hewasimpatient;hewouldcryandmoan…sometimeshescreamed
atme,hewouldhitme,outoftheblue�Hejustcouldnotstandallthat�Hehad
neverbeensickbefore…Myboy…heknewthatIwascryingallthetime,that
Iwassad�Hecriedto,sometimeshewasunbearable;whenhefinallyletmeleave
Ialwayshadtobuysomethingforhim�Hecouldbebadtootheradultstoo�Once
heevenspatononelady�Hewouldscratchmeandhitme…Hejustcouldnottake
thehospitalanylonger�”
Themedicalpersonnelusuallydonotinformthechildastowhatdiagnostic
proceduresandtreatmenttheyareplanningtoapply�Thiscausesiatrogenicstress�
Researchcarriedoutamongsttheyoungpatientsandtheirparentspointstothe
factthattheyareallconvincedthatthelessthechildknowsaboutthenegative
aspectsofthedisease,thebetteritisforthechild�Thesubjectofcancerisnotdis- cussedandveryfewmembersofthemedialpersonnelareabletoofferpsycholog- icalsupportwhichcouldpreparethechildrenforthelengthymedicalprocedures
andtreatment�Thisisbutoneoftheexampleshowlightlytheissueofsatisfying
thepatients’cognitiveneedsistreatedbythepersonnel(Maciarz,2006,p�34)�
AsTobiasz-Adamczyk(2002)pointsout,achildisabletounderstandtheissues
relatedtoitshealthbetterthanitisgenerallybelieved�Directcommunicationbe- tweenthechildanditsdoctormaypositivelyinfluencetheresultsoftreatment�It
couldconstituteaformofsocialsupportwhichcouldmotivatethechildtofight
thediseaseandbethesourceofpositivethinking�Patientsareoftentreatedas
objectswhichmaybeseeninthefollowinginterview�
“AndthenIaskedthedoctorwhethertotellmeboyabouttheoperationbut
hesaidabsolutelynot�Onthenextday,fromtheearlydawndoctorswouldgo
toandfro�Theyweretooperateonmyson�EventhenIaskedthemifIshould
tellhimandthenanotherladydoctortoldmethatdefinitelyyes,thatIhadtotell
mychildabouttheoperation…WhatwasIsupposedtoto?Mysonkeptasking,
hewasverynervous�Nowonder,afterallthosetests…Hedidnotwanttostay
inhospital,hewasfedupwitheverythingIthinkhecouldsenseit��…Iwasat
acompletelosswhethertotellhimornot�Nobodyhelpedmedecide�Someof
themsaidyes,theotherssaidno�Butthedecisionwasmine�Intheend,Ididnot
tellthechildabouttheoperation�Itoldhimthathewouldbetakenforsomemore
tests…Hewasjustlookingatme��thatstrangelook���Hecouldsensethat�Hehad
trustedme�HeaskedseveraltimesandIliedtohim…Ididnotknowwhatwas
best�Ijustdidnotknow…Theytookhimtothetheaterjustlikethat,completely
notprepared�”
Theinformationthechildgetsaboutthedisease,itseffectsandoptionsof
treatmentisveryscarcehencetheinadequateandincorrectimageoftheirown
diseasethatthechildhastolivewith�Allthetimethepatientwitnessesnumerous
personnelbehaviorswhichmaybequalifiedasiatrogenicandoffersnothingbut
morestresswhichthechildisunabletocopewith�Theonlythinglefttothemis
toautomaticallyreactdefensivelyand–frequently–irrationally�
Thelackofpsychologicalpreparationtotheproceduresanddiagnosticsis
extremelypainfultochildren�Anotherunbearablefactisthelimitationoftheir
physicalactivitywhichresultsfromhospitalrigorsthatcannotalwaysbejustified
byhygienicrequirements�Additionallythereisidleness,boredom,monotonyand
thepersonnel’semotionalindifference,theirdisregardforthechild’scognitive
needsandtheirautocratism�Asoneofthemotherssays,thechildrenarenotatall
informedaboutthescheduledtreatments�
“Well,usuallyanursecomesinandtellsthechildthathewillbetakenfor
alumbarpuncture�Thisstressisjustunimaginableforachild�Forthedoctorsit
isaroutineprocedurebutforthechilditisnotsoroutine�Theonesthathavehad
italreadytakeitcalmlybutsomekidsarescared,theycryandfinditunbearable�
Justlikemysonatthebeginning�Nobodytoldhimanything,theyjusttookhim
thereandthatwasit…”
Medicalpersonneldoesnottakeanytroubletoinformthechildaboutthe
methodsoftreatment,theyarenotinterestedinpsychologicalproblemsthechild
mayhave,theyarenotpatient,theydonotwantorhavetimetolistentothechild�
Thereisnotherapeuticcontexttoalleviatethefearofproceduresandoperations�
Thisdepressesthechildevenmore,evokesthefeelingsofrestlessness,anxiety
andgenerallydeterioratesthewell-beingoftheyoungpatient�Thisinturnmay
leadtotheappearanceofnewneurosis-relatedsymptomswhichdelayhealingand
mayleavepermanenttracesinthechild’spsyche�
Undoubtedly,thechangesinthechild’ssocialactivitycausedbytheirhos- pitalizationinfluencethecourseofthedisease�Thechangesdependoninterper- sonalrelationshipsoccurringinthehospitalandbeyondit�Verynegativestances
frequentlydevelopamongstthosewhosurroundedthepatientwhofeelsrejected
bytheirpeersandotherpeoplewhousedtobeclosetothem�Thechildfeelsinse- cure,lonelyandlost�Thebondswiththeformerenvironmentarebrokenandthe
child’steachersrarelyorganizeanysupportforthelittlepatients�
Theissueofschoolworkcannotbeunderestimatedsincethechildmustlearn
mostschoolsubjectseventhoughthelearningprocessismuchsloweranditis
carried out in very basic educational environment� Despite the inconvenience,
thefactthatthechildcarriesonlearning,gettingschoolmarksandsustainingits
educationalreadinessmaysatisfythechild’scognitiveaswellassocialneeds�The
prospectsofreturningtoschoolonedayofferssupporttothechild’semotions;
itofferssecurityandself-esteem(Chęcińska,2005)�Schoolworkintroducesthe
elementsofordinarylifeintothehospitalrealityandallowsthechildtofocuson
somethingelsethanthedisease(Binnebesel,2002)�Itintroducessomevarietyin
thelifeofthechildsufferingfrompersistentboredom�
Someteachersoffersupporttotheirstudentsnotonlybyconcreteeducational
activitiesbutalsobyshowingthemsomeunderstanding,havinginterestingcon- versationswiththeirpatient-studentsthusachievingthegoalsoftherapeuticpeda- gogy�Unfortunately,theroleofhospitalteachersisfrequentlylimitedtoteach- ingandrealizingthecompulsoryacademiccurriculum�Theteachersworkingin
hospitalsareonlysupportedbyonepedagoguewhoisusuallyunabletofulfillthe
needsofallthepatients�
Needless to say, the situation of hospitalized teenagers who have almost
reachedtheirphysicalmaturityisevenmoredifficult�Beforethedisease,they
usuallyhaveverygoodrelationswiththeirpeers,theyhavecreatedfairlyrealistic
imageofthemselves,definedsomepurposesandplansforthefuture�Theyare
verymuchawareofthedangerstheirdiseasemaycarryandtheyfindithardto
acceptthattheirlifehaschangedsodrastically�Suchpatientssufferfromvery
particulartypesofproblems�Theyconfronttheirsituationwiththeneedtobe
independent�Theirappearanceisveryimportanttothemjustasistheopportunity
tofulfilltheirhopesandambitions�Theysufferbecauseofthelossofcontrolof
theirownliveswhichtheyperceiveasathreatintheirattempttobeindependent
aswellastheirabilitytodecideforthemselves�
Thelackofpsychologicalsupportisverypainful;withoutit,teenagersare
unabletocarryburdenofthedisease�Theirmaturityisnotrespectedandthus
they are seldom included in the therapeutic process which could at least give
themasenseofcontrolofthedecisionswhich,afterall,affectthem(Kowalczyk,
Samardakiewicz,1998)�
Onemayeasilynoticethatallsickchildren,regardlessoftheirage,areforced
tocopewithtwotypesofcrisis–adevelopmentaloneaswellasthesituational
one�Theproblemsmultiplyandthepatientsaredeprivedoftheopportunityto
carryonwiththeirpositivedevelopment�
Thereisnodoubtthatthediseasecallsformuchmorethatjustmedicalinter- vention;psychologicalandsocialsupportisessentialaswell(Maciarz,2001)�The
researchshowsthattheoreticalknowledgeisnotsupportedbypracticalactivities�
Inhospitalpracticethereseemstobeanabyssbetweenunderstandingtheyoung
patient’semotionalstateandtherealactionstakenbythepersonneltosupportthe
child�Understandingthenecessityofpsychologicalsupportisneveraccompanied
withconcreteactions�Thechildneedsprofessionalsupportbutdoesnotgetitin
spiteofthefactthatthereisapsychologistworkingfulltimeontheward�The
onlysupportthepatientmaycountonisofferedbytheirfamily,especiallytheir
motheraswellasbytheirowndefensemechanismswhicharesolimitedbythe
diseaseandhospitalization�Thechildisnotofferedanysystematictherapeutic
supportwhichissoimportantinthestruggleagainstthedisease�Almostallofthe
respondentsstressedthatfact�
“Itisnothumanlypossibletounderstandthatinthesituationwhenassistance
isneededimmediatelyeverybodytreatsyouasifyouwerenotthere�Beforethe
psychologistdecidedtodevotesomeofherprecioustimetoher,andsheknew
everythingaboutmydaughter,severaldayswentby…IwasappalledasIthink
thatinsuchsituation,althoughthepsychologistsworksuntil3pm,sheshould
comeintheevening�Thisisachildwearetalkingabout!”
“Noneofushadachancetotalktothepsychologist,wedidnotevengetin
touchwithher,noneofus…(���)Hereintheward,Ithink,theassistanceister- rible,somepeopleshouldnotevenbeworkinghere…Idonotthinkthatthepsy- chologistevenworkshere,eventhoughtheyphysicallyareontheward�Isome- timesloseit,justliketheotheronesbutthereisnohelpinsight…Zero�Nobody
everofferedmeanyhelpwiththat�”
support offered to Children in the Period of maintenance therapy
Most children continue their treatment at home�All of them call for veryregularfollow-upandrehabilitationinthesomaticandpsychologicalaspect�
Thejoyofcomingbackhomeisusuallyblurredbystrongstresswhichinflu- encesthechild’sadaptiveabilitiesandemotions,theirwillandtheiraims�The
childstillhastocopenotonlywithphysicaldisabilitiesandlimitationsbutalso
withsocialdifficulties�Theyalladduptocreateonehugesetofcomplications
andlimitationswhichmakeitsodifficultforthechildtore-adapttofamilylife�
Theproblemsresultfromthediseaseitselfaswellasfromthestressfulhospital
treatmentastheemotionalstateofthechildisstronglyaffectedbybothofthem�
Thechildissimplyunabletobejustlikebeforetheillness�Adaptiveefforts
areusuallyaccompaniedbymemoriesandexperiencesrelatedtothediseaseand
treatment(thethreatofcomplications,death,anxiety,thechangedappearanceand
frustrationresultingfromnotbeingabletoparticipateinordinarylife)�Thechild
isunabletoacceptthenewroutinesastheydeprivethemofthefeelingofcontrol
oftheirownlife,security�Inreturnthenewlifestyleoffersnothingbutlimitations�
Thechildneedstobemorematurethatitshealthypeers,moredisciplined
whichisneededinanytherapy�Itseverydaylifeismarkedbyfearofrecurrence
resultingwithanotherhospitalization�Theyoungpatientisstillconfrontedwith
thehauntingthoughtsofdeath,especiallywhentheyfindoutthattheirfriendfrom
oncologywardhaslosttheirbattle�Thelivingspaceislimitedbystrugglewith
pain,anxietyandloneliness�
Thestaminaandenergylevelsdropandthechildisveryreluctanttodealwith
newtasks�Itbecomessuspiciousanddistrustful;itsself-esteemdeterioratesand
isolationstendenciesincrease�Withtime,resignationcomes,thechildbecomes
verycompliantandsubmissiveastheyseethemselvesashelplessanddependent
ontheothers�Theproblemisillustratedinthefollowinginterviews:
“Shehassuchmomentswhenshecreepsinhershell,asifshewasnotthere�
Sheissad,impatient,irritable…sometimesevensheissoangryasifshewanted
tohitme…”
“ButtheworstthingisthatIdon’tevenlikemyhouseanymore�Thereisnot
asingleplaceImiss�Ifeelsobadandinsecureeverywhere�Thishasbeengoing
onfortoolongandIthinkIamgoingmad…”
Parentssacrificealotoftimeandefforttothesickchild�Theybecomemore
tolerantandacceptmuchdisobediencewhichtheywouldfindunacceptableinthe
past�Theytolerateaggressionwithwhichtheydidnotusetoputupbeforethe
disease�Thesickchild’sproblemsbegintodominateinthefamily,thatbreeds
moreconflictsandstress�Asaresult-thewholefamilysuffers�
Thechildrencomebackhomeandtheyreturntoschool�Atthebeginning,
thechildistaughtbyteacherswhocometotheirhouse�Atthattime,itisvery
importantthatbesidesteachingparticularsubjects,theteachersshouldreintro- ducethechildtotheiroldschool,friendsandenvironment�AccordingtoMaciarz
(1996)thisissueisfrequentlyneglectedbyteachers�Individuallearninghasmany
drawbacks�Firstofall,teachersfocusonseveralschoolsubjectsandignorethe
psychologicalneedsthechildmayhave�Theyrarelyinitiatecontactsbetweenthe
childanditsoldclassmates�Thatcouldbeofmajorimportanceforthesocializing
processesnotonlyforthesickchildbutalsoforitsfriends�Thepatient’seduca- tionalneedsareignored�Asthefollowingopinionsuggests,educationplaysavi- taltherapeuticroleinthelifeofasickchild:“Asfaraslearningisconcerned,the
worstaremydaughter’steachers�Whensheisathome,andshehastostayhome
veryoften,theyneedtocomeandteachher�Butheretheydon’t�Noneofthe
teacherswantstocomeintheafternoon,itiseithertoolateortoodark…anyway,
theycannotgettous�AsIsaid,theyhavealreadycheckedherout�Mydaughter
doesnotexistforthemanymore�OnceIwenttoseetheprincipalbutwithoutany
result�NowIamtotallypowerless�Iamjustsosorrythatshelagsbehindwiththe
material,sheusedtobesuchagoodstudent…”
Thenecessitytomakeuseoftheavailablere-educationalprogramsisfre- quentlydisregarded�Therulesoutlinedintheofficialdocumentpreparedbythe
PsychosocialCommitteeattheInternationalOrganizationofPediatricOncology
arenotfollowed�
Havingreturnedtoschool,thechildfindsitdifficulttofulfilltherolesof
astudentsandamemberofitspeergroup�Itpoorlyadaptstoteachers’require- mentsandthenormsoftheirpeergroups�Itcannotfulfilitssocialroles�Very
fewteacherstakeupanyactivityinordertoofferthechildsomeemotionalsup- port�Neithertheclassmatesnortheschoolpersonnelarepreparedtoacceptthe
childandtherearenumerousmisunderstandingsrelatedtothedisease�Somepeer
reactionsareunacceptable;theymakecommentsonthechild’sappearance,ask
unpleasantquestions,etc�Asthefollowingexcerptfromaninterviewwithone
ofmothersshows,thereturnofthechronicallysickchildtotheirpeerscanbe
extremelydifficult:“Sherefusesgoingtoschoolcompletely,shedoesnoteven
wanttomeettheirfriends�Nowonder…Sheisfedupwithalltheunpleasantre- marks,laughing,staring,thecommentsonthefactthatshehasnohair,allthat…
ShedoesnotwanttocomebacktothisschoolandIhavetoorganizeteachers
cominghometoteachher�Shesaidthatshemightwanttogotoanewschoolbut
shedoesnotwanttoseeheroldclassmates�Icannotforceher,butshedoesnot
wanttomeetanyone,shewouldratherstayhomeallthetime…”
Anothernegativefactisthereluctanceofhealthychildrentogetintointerac- tionwiththesickones�Thisseemstobecausedbycertainnegligenceonthepart
ofeducatorswhodonotencouragehealthychildrentoaccepttheirsickfriends�
Ontheotherhand,nobodyseemstomakeanefforttoincreasetheirself-esteem
andteachthemhowtointeractwiththeirhealthyclassmates(seeMaciarz,1998)�
Asickchildwhohastocopewiththeirpeers’negativeattitudes,perceivesthefact
thatbeing“different”meansbeing“worse”�Suchayoungsterfindsitdifficultto
acceptthemselves;theirassertivenessdisappears�Theyarecertainthattheycan- notdealsuccessfullywithparticularrolessotheydonotassumetherole�Incon- sequence,thesickchildbecomessociallyisolated�Theyarepronetofrustration
causedbythereactionsoftheirpeers;theylosetheirneedformotion,emotions,
intellectualactivityaswellassocialinteraction�Thereisasuggestivedescription
ofasickchild’smotherswhichillustratestheabove:
“Mysonwasathomethen…thatwasshortlybeforethethirdrecurrence�
Hewasstillabletowalkthen�ItwasChildren’sDayandourlocalauthorities
organizedabonfireforthekids�Mysonwantedtoplaywithkidssoheandhis
sisterwentthere�Unfortunately,therewerenosausagesleftforthemtoroast�The
villagekidsstartedcallinghimnames�Theymockedhimbecausehewasswol- len,baldandfat�Mysonwaslimpingthenbuthemanagedtorunbackhomein
tears…MydaughterwascryingsohardthatIwasunabletocalmherdown�She
wastryingtoprotecthimtherebutshecouldn’t�Oh,howweallcried!EvenIdid�
LaterIwenttoseetheprincipalbuthedidnotdomuch”�
In view of the above, one may anticipate that some of the problems will
emergeandtheonesthatalreadyexistwillincrease�Thechildmayexpressemo- tionalindifferentism,aggression,itsuffersfromisolationandavoidssocialinter- actions;therecomesalackofself-esteemandhelplessness;theymaybeprone
toneuroticbehavior,sufferfromintellectual,emotionalandsocialdevelopment
retardation;theymaybeunabletosatisfytheirneedsofacceptanceandconsider- ablyslowdowntheprocessofsocializing�
Thereisnpdoubtthatallsickchildrenstayingathomeneedprofessionalpsy- chologicalsupport�Theirparentsaregenerallyawareofthatneed,yettheycannot
accesssuchassistanceortheyfinditdifficulttogetsomesupportfortheirchildren�
Theyfrequentlydonotknowwhototurnto�Emotionalsupportofferedtochildren
bytheirparentsisinadequateandprofessionalhelpisrarelygranted�Professionals
aremostlyhiredbytheirparentsdespitelimitedfinancialabilities;somesimply
cannotaffordtopayforsuchspecialists�Letusnotforgetthataccordingtopsycho- oncologists,“onlyawelldesignedandcarriedoutphysical,psychologicalandsocial
rehabilitationmayleadtotruehealing”(Kowalczyk,Samardakiewicz1998,p�42)�
Conclusions
Despitethediseasewhichposesarealthreattothechild’spsychologicaland
physicaldevelopment,theyoungpatientstillneedstodevelop�Forthatreasonthe
treatment,careandeducationmustbeassistedbyspecialists–aninterdisciplinary
teamofdoctors,physiotherapists,psychologistsandeducators�Theteam’scoop- erationwiththechildanditsfamilycouldalleviateoratleastlimitthenegative
consequencesofthedisease�Unfortunately,ashasbeenshownbytheresearch,
thispostulateisnotimplemented�Althoughthestudywascarriedoutonconcrete,
individualcases,itmaybegenerallyconcludedthatthesupportofferedtosuch
childrenisnotofuniversalcharacterandthattherearetoofewspecialistswho
aremotivatedandcompetentenoughtoprovidethechildrenwithprofessional
psychologicalassistance�
Despitethefactthatthecontemporaryculturehighlyvalueslifeandhealth,
theproblemsofchildrencopingwithcancerseemtobeneglected�Inlightofthe
interviews, psychological support is as much inadequate as it is necessary�As
aconsequence,thetherapeuticaimsarenotreached,theefficacyoftreatmentis
muchbelowexpectations�Moreover,thechild’spsychologicalandsocialdevel- opmentisindanger�
Theadequatesupportstillremainsinthesphereofplans,although“social
support giventothepatientwithcancershould definitelybringaboutpositive
health effects” (Wrześniewski, Włodarczyk, 2000, p� 172)� The support is de- signedbasedonhealthrelatedobjecitveswhicharespecifictothepatient’ssitua- tion�Itmusttakepsychophysicalunityandobjectivesituationalrequirementsinto
consideration�Thesupportneedstoaimatminimizingthenegativepsychosocial
consequencesofthedisease�Therefore,socialsupportshouldbedesignedinview
ofthecomplexsituationthatthesickchildfindsitselfin,theplacewherethechild
istreated,thephaseoftreatment,itspsychophysicalcondition,itsageandperson- alitytraits,aswellasgeneralandeconomiccircumstancesinthefamily�
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