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Social Support and the Prospects of Sociopsychological Development of Children with Oncological Disease

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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

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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

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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

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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,

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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

DespitethefactthatinPolandtherearecurrently17specializedpediatric

hematologyandoncologycenters,notalltheelementsofpsychosocialsupport

haveyetbeenstarted�Andeveniftheyhave,theyarenotalwaysadequatetothe

patients’needs�Theaboveisbasedontheresearchcarriedoutonpediatrichema- tology,oncologyandtransplantologywardsinamajorclinicalcenter�

Theresearchfocusedmainlyoncrisissituationswithinthefamilyandman- nersofcopingwiththecrisis,showedthatthereisalsoaneedtosupporteachfam- ilymember,andespeciallytheyoungoncologicalpatient�Basedontheresearch,

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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”�

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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

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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

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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

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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

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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�”

(12)

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

(13)

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�

(14)

“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 very

regularfollow-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:

(15)

“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

(16)

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

(17)

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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