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PSYCHOLOGICAL SUPPORT FOR CHILDREN WITH CHRONIC ILLNESSES AND THEIR FAMILIES
M. Gorenc
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3UL RWURFLK V NURQLþQR EROH]QLMR LQ QMLKRYLK GUXåLQDK VH VUHþXMHPR V SRYHþDQLP WYHJDQMHP ]D SRMDY SUL- ODJRGLWYHQLK LQ SVLKLDWULþQLK WHåDY NL ODKNR RYLUDMR ]GUDYOMHQMH LQ QHXJRGQR YSOLYDMR QD VDPR EROH]HQ 9SULVSHYNXSRMDVQMXMHPRNDNRNURQLþQDEROH]HQYSOLYDQDIXQNFLRQLUDQMHRWURNDLQQMHJRYHGUXåLQH2G WRGSRJRVWRL]KDMDWXGLSRWUHEDSRQXGHQMXSVLKRORãNHSRGSRUH2SLVXMHPRWXGLSVLKRORãNHXNUHSHNLODKNR EROQLNXLQQMHJRYLGUXåLQLSRPDJDMRSULVRRþDQMXVNURQLþQREROH]QLMR
.OMXþQHEHVHGHSRGSRUDRWURNXSVLKRORJLMDNURQLþQDEROH]HQ
ABSTRACT
&KLOGUHQZLWKFKURQLFLOOQHVVHVDQGWKHLUIDPLOLHVDUHDWULVNIRUDGYHUVHSV\FKRORJLFDOSUREOHPVWKDWPD\
LQWHUIHUH ZLWK WUHDWPHQW DQG KDYH D QHJDWLYH LQIOXHQFH RQ WKH LOOQHVV LWVHOI ,Q WKH DUWLFOH WKH LPSDFW RI FKURQLFLOOQHVVRQWKHFKLOGDQGKLVIDPLO\¶VIXQFWLRQLQJLVGHVFULEHG7KHDUWLFOHDOVRSUHVHQWVSV\FKRORJLFDO LQWHUYHQWLRQVZKLFKFDQDVVLVWFKLOGUHQDQGWKHLUIDPLOLHVWRFRSHZLWKFKURQLFLOOQHVV
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UVOD
.URQLþQD EROH]HQ SRPHPEQR SRVHåH Y RWURNRYR åLYOMHQMH SD WXGL Y åLYOMHQMH QMHJRYH GUXåLQH =D RWURND SUHGVWDYOMD NURQLþQL VWUHV RPHMLWYH Y YVD- NRGQHYQHPåLYOMHQMXLQGHORYDQMXSRJRVWLVSUHMHPL Y EROQLãQLFR EROHþLQD VSUHPHPEH Y GUXåLQVNL GLQDPLNL RPHMHQD VDPRVWRMQRVW VWUDKRYL RYLUDQ SURFHV ãRODQMD LQ V WHP SULQDãD WYHJDQMH ]D SRMDY WHåDY Y þXVWYHQHP LQ VRFLDOQHP IXQNFLRQLUDQMX NL VR YþDVLK ODKNR FHOR EROM REUHPHQLOQH NRW VDPD EROH]HQ3ULNURQLþQREROQLKRWURFLKVHYSULPHUMDYL z zdravimi vrstniki pogosteje pojavljajo prilago- GLWYHQH LQ SVLKLDWULþQH WHåDYH GHSUHVLMD SUHWLUDQD ]DVNUEOMHQRVWQHXVWUH]QRYHGHQMHWHåDYHYVRFLDOQLK LQWHUDNFLMDK LQ Y ãROVNHP IXQNFLRQLUDQMX ýe VR WH WHåDYH SUHYHþ LQWHQ]LYQH DOL WUDMDMR SUHGROJR neugodno vplivajo na zdravljenje in samo bolezen.
.URQLþQD EROH]HQ SUL RWURNX YSOLYD WXGL QD SVL- KRORãNR IXQNFLRQLUDQMH RVWDOLK GUXåLQVNLK þODQRY 6NUEY]JRMDLQQHJDEROQHJDRWURNDVWDUãHPSULQD- ãDMR PQRJR EUHPHQ LQ REYH]QRVWL SRJRVWL RELVNL Y ]GUDYVWYHQLK XVWDQRYDK SRPRþ RWURNX SUL VRR- þDQMXVWHOHVQLPLLQþXVWYHQLPL]DKWHYDPLEROH]QL VRGHORYDQMH V ãROR LVNDQMH UDYQRYHVMD PHG VNUEMR za bolnega otroka in zadovoljevanjem potreb dru- JLK GUXåLQVNLK þODQRY NDU ODKNR SRY]URþD QDSH- WRVWREþXWNHNULYGHVLPSWRPHSVLKRORãNHJDVWUHVD GHSUHVLMR WHVQREQRVW XWUXMHQRVW LQ VSUHPHPEH Y SRPHPEQLKVRFLDOQLKRGQRVLKVWDUãHY
3VLKRORãNDSRGSRUDEROQHPXRWURNXLQQMHJRYLGUX- åLQLODKNRSRPDJDSULVRRþDQMX]EROH]QLMRLQQMH- QLPL SRVOHGLFDPL 9 þODQNX RSLVXMHPR ]QDþLOQRVWL NURQLþQHEROH]QLWHUYSOLYQDIXQNFLRQLUDQMHRWURND LQQMHJRYHGUXåLQHL]þHVDUL]KDMDWXGLSRWUHEDSR QXGHQMXSVLKRORãNHSRGSRUH
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FUNKCIONIRANJE OTROKA
'RMHPDQMH QHSRVUHGQLK LQ GROJRURþQLK SRVOHGLF NURQLþQHEROH]QLMH]DSOHWHQSURFHVWDNR]DRWURND
LQVWDUãHNRWWXGLãLUãRGUXåLQR2WURFLLPDMRODKNR WHåDYH ] UD]XPHYDQMHP NDM VH GRJDMD ] QMLKRYLP WHOHVRP /DKNR MLP MH QHSULMHWQR NHU VH SRþXWLMR GUXJDþQL RG YUVWQLNRY 3ULODJRGLWL VH PRUDMR QD VLPSWRPHEROH]QL]GUDYOMHQMHREþXWNHUDQOMLYRVWL L]JXER VDPRQDG]RUD LQ ]QLåDQMH VDPRVSRãWRYDQMD Bolezen lahko vpliva tudi naGROJRURþQH otrokove XSH VDQMH LQ DPELFLMH =DWR SRMDY EROH]QL SUL RWURNXVSURåL]HORUD]OLþQHREþXWNHMH]RåHOjo po WHP GD EL ELO QRUPDOHQ RVDPOMHQRVW XPLNDQMH L]
VRFLDOQLKLQWHUDNFLMDOLSUHWLUDQRRNOHSDQMHRGUDVOLK pomanjkanje samozavesti. Otrokovo vedenje lahko SRVWDQHPDQM]UHORLQSULODJRMHQRNRWMHELORSUHG SRMDYRP EROH]QL PRåQD VR PRþQD LQ QHQDGQD þXVWYHQDQLKDQMD3ULRWURFLKVNURQLþQLPLEROH]- nimi se dvakrat pogosteje pojavljajo prilagoditvene LQ SVLKLDWULþQH WHåDYH ]ODVWL GHSUHVLMD LQ SUHWLUDQD ]DVNUEOMHQRVWR]LURPDWHVQRED
2 XVSHãQL SULODJRGLWYL QD NURQLþQR EROH]HQ JRYR- ULPR NR SUL RWURNX SUHYODGXMHMR SR]LWLYQD þXVWYD ko je otrokovo vedenje ustrezno glede na razvojno VWDURVW WHU LPD SR]LWLYQR VDPRSRGRER KNUDWL SD XVWUH]QRVOHGLLQVRGHOXMHYSURFHVX]GUDYOMHQMD 1D XVSHãQRVW SULODJRGLWYH YSOLYDMR UD]OLþQL GHMDY- QLNL PHG GUXJLPL WXGL QDUDYD EROH]QL ãH EROM SD GHMDYQLNL NRW VR VWDURVW RWURND RWURNRY WHPSHUD- PHQWVWUDWHJLMHREYODGRYDQMDVWUHVDWHULQWHUDNFLMH]
YUVWQLNLVãRORLQVWDUãL3R]QDYDQMHWHKGHMDYQLNRY je pomembno za prepoznavanje tveganja z nastanka GXãHYQLKWHåDYLQVWLVNWHU]DSUDYRþDVQRLQXVWUH]- QRL]YDMDQMHSVLKRORãNLKXNUHSRY
1DUDYDLQUHVQRVWEROH]QL
9VDND NURQLþQD EROH]HQ V VHERM SULQDãD GUXJDþQH omejitve in zahteve. Tveganje za pojav vedenjskih WHåDYLQVODEãDVRFLDOQDSULODJRMHQRVWVWD]ODVWLSUL- VRWQD SUL WLVWLK NURQLþQLK EROH]QLK NL YNOMXþXMHMR PRåJDQHQSUHSLOHSVLMDLQVHQ]RUQHVLVWHPHQSU JOXKRVWLQVOHSRWD9HþSVLKRORãNLKWHåDYMHSULVRW- QLKWXGLSUL]GUDYVWYHQLKVWDQMLKNLWUDMDMRUHODWLYQR GROJR 3RVHEQR QHJDWLYQR QD RWURND YSOLYDMR GROJDLQSRJRVWDELYDQMDYEROQLãQLFLNHUMHSULNUDM-
ãDQ]DQXMQHUD]YRMQHVSRGEXGHWHUSROQHPRåQRVWL da razvije razliþQLKVSUHWQRVWLLQVSRVREQRVWLMoten MH WXGL SURFHV ãRODQMD LQ RWURN VH PRUD SULODJRGLWL QDSRPDQMNDQMH]DVHEQRVWLRPHMHQRVDPRVWRMQRVW ORþLWHYRGGUXåLQVNLKþODQRYLQVSUHPHPERRELþDM- QHGQHYQHUXWLQH=DWRVHODKNRYRGQRVXGR]GUDY- VWYHQLK GHODYFHY SRMDYLMR WHåDYH V VRGHORYDQMHP XSLUDQMHLQRSR]LFLRQDOQRVW
6WDURVW
Otrokovo odzivanje na bolezen in zdravljenje je veliki meri odvisno od razvojnega obdobja ob QDVWRSX EROH]QL 6WDURVW YSOLYD WXGL QD WR NDNR otrok razume dejstva o svoji bolezni in sodeluje pri ]GUDYOMHQMXWHUQDNDNãHQQDþLQVH]EROH]QLMRVNXãD VRRþLWL
2EGREMHPDOþND
/RþLWHY RG VWDUãHY LQ QHSUHVWDQL VWLNL ] QH]QDQLPL OMXGPLPDOþNDVSUDYOMDMRYYHOLNRVWLVNRWHURYLUDMR SURFHVQDYH]RYDQMDPHGRWURNRPLQVWDUãL0DOþHN WXGL QH PRUH UD]XPHWL ]DNDM JD QMHJRYL VWDUãL QH ]DãþLWLMRSUHGEROHþLQR=D]GUDYUD]YRMPDOþNDMH ]HORSRPHPEQRGDUD]LVNXMHRNROMHLQODVWQRWHOR posega po predmetih in se samostojno giblje. Med aktivnim izbruhom bolezni in zdravljenjem v bol- QLãQLFLSDMHRWURNSULNUDMãDQ]DYVHWHVSRGEXGHNDU ODKNR SRY]URþL UD]YRMQL ]DRVWDQHN QD SRVDPH]QLK SRGURþMLK 2WURNX NL ]EROL Y REGREMX PDOþND ]D QMHJRY UD]YRM QDMEROM NRULVWL GD MH þLP NUDMãL þDV ORþHQ RG VWDUãHY LQ GD LPD QD YROMR þLP YHþ razvojnih spodbud (þLPYHþVDPRVWRMQHJDJLEDQMD XSRUDEDUD]OLþQLKLJUDOQLKPDWHULDORYLQUD]LVNRYDQ- MHRNROMD
2EGREMHSUHGãROVNHJDRWURND
3UHGãROVNL RWURNUD]PLãOMD ]HOR NRQNUHWQR LQ ãH QH UD]XPH NRQFHSWRY NROLþLQH LQ WUDMDQMD =DWR VL QH ]QD SUHGVWDYOMDWL NDM SRPHQL GD ER QHNDM WUDMDOR
»samo minuto« ali da bo »samo malo bolelo«.
3R]RUQRVWMHVODEãHUD]YLWD]DWRVLQDMYHUMHWQHMHQH
bo zapomnil informacij ali navodil zdravstvenega RVHEMD =DUDGL NRQNUHWQHJD QDþLQD UD]PLãOMDQMD VH ODKNR]JRGLGDRWURNPHGLFLQVNHSRVWRSNHUD]XPH NRWND]HQVODERYHGHQMH6WYDULNLVH]JRGLMRODKNR SULSLãH ODVWQLP PLVOLP þXVWYRYDQMX LQ YHGHQMX ]EROHO MH NHU MH ELO SRUHGHQ 3UHGãROVNHPX RWURNXMHYYHOLNRSRPRþþHþLPYHþVYRMLKVWLVNLQ VWUDKRYSUHGHODVSRPRþMRLJUH
2EGREMHãROVNHJDRWURND
0LãOMHQMH ãROVNHJD RWURND SRVWDMD YVH EROM ]UHOR ]DWR EROMH UD]XPH VYRMR EROH]HQ LQ UD]OLþQH PHGL- FLQVNH SRVWRSNH 9HQGDU SD VH ]DUDGL WHJD WXGL Y YHþMLPHULRNUHSLWDVWUDKSUHGVPUWMRLQVWUDKSUHG SRãNRGER WHOHVD /DåMH JRYRUL R VYRMLK þXVWYLK LQ VH VSRGEXMD 1H]PRåQRVW QDG QDG]RURYDQMHP SURFHVD]GUDYOMHQMDODKNRY]EXGLREþXWNHVWUDKXLQ QHPRþL
Obdobje adolescence
=D PODGRVWQLNH VR ]QDþLOQL SUHWLUDQR XNYDUMDQMH ] ]XQDQMLP L]JOHGRP ]DWR ãH WHåMH SUHQHVHMR PHGL- FLQVNHSRVWRSNHNLYSOLYDMRQD]XQDQMLL]JOHGXSL- UDQMH DYWRULWHWL QHXSRãWHYDQMH ]GUDYVWYHQLK QDYR- GLO LQ ]PRåQRVW DEVWUDNWQHJD PLãOMHQMD =DUDGL EROMãLKVSRVREQRVWLORJLþQHJDPLãOMHQMDODKNRXSR- UDELMR ELVWYHQR YHþ VWUDWHJLM REYODGRYDQMD SUREOH- PRYVSURVWLWYHQHWHKQLNHSUHREOLNRYDQMHQHXVWUH]- QLKQHJDWLYQLKPLVOLSR]LWLYQHVDPRVSRGEXMHYDOQH L]MDYH NRW PODMãL RWURFL YHQGDU KNUDWL GRåLYOMDMR WXGLYHþMHVWUDKRYHJOHGHL]LGDR]SRVOHGLFEROH]QL LQ ]GUDYOMHQMD ýH PODGRVWQLN SURFHVD ]GUDYOMHQ- MD QH PRUH QDG]RURYDWL ODKNR QDVWRSLMR REþXWNL QHPRþLLQSUHWLUDQHRGYLVQRVWLRGRGUDVOLK
7HPSHUDPHQW
7HåDYHQ WHPSHUDPHQW MH SRYH]DQ ] YHþMLPL SUL- ODJRGLWYHQLPL WHåDYDPL =ODVWL SRPHPEQL VR UDYHQRWURNRYHDNWLYQRVWLQHPLURGVRWQRVWUHGQLK Y]RUFHY RVQRYQLK IL]LRORãNLK IXQNFLM NRW VR WHN LQ VSDQMH UHDNWLYQRVW WHåDYH SUL SULODJDMDQMX QD
VSUHPHPEH LQ QRYH VLWXDFLMH LQ W L RGNUHQOMLYRVW RWURNDVHVWHåDYRRGNUHQHRGQHNHGHMDYQRVWL
6WUDWHJLMHREYODGRYDQMDVWUHVD
=DREYODGRYDQMHVWUHVDYSRYH]DYLVNURQLþQREROH]- QLMRRWURFLXSRUDEOMDMRUD]OLþQHVWUDWHJLMH6WUDWHJLMH SULVWRSDQMD N SUREOHPX YNOMXþXMHMR ]DVWDYOMDQMH YSUDãDQM Y ]YH]L ] ]GUDYVWYHQLP VWDQMHP LVNDQ- MH þXVWYHQH LQ VRFLDOQH SRGSRUH SUHG EROHþLPL ]GUDYVWYHQLPL SRVWRSNL L]ND]RYDQMH ]DQLPDQMD ]D ]GUDYVWYHQH SULSRPRþNH LQ LJUR ] HOHPHQWL L]
]GUDYVWYHQHJD RNROMD 6WUDWHJLMH L]RJLEDQMD YNOMX- þXMHMR]DWHNDQMHYVSDQMHVDQMDUMHQMHLQL]RJLEDQMH SRJRYRUX R EROH]QL DOL SRVWDYOMDQMX YSUDãDQM Y ]YH]L ] EROH]QLMR 6WUDWHJLMH L]RJLEDQMD VR ]HOR SRJRVWH ]ODVWL Y ]DþHWQL ID]L EROH]QL 1D EROH]HQ LQ ]GUDYOMHQMH VH ODåMH SULODJRGLMR WLVWL RWURFL NL N REYODGRYDQMXVWUHVDSULVWRSDMRDNWLYQRWHU]REþXW- NRP QDG]RUD QDG VYRMLP åLYOMHQMHP LQ EROH]QLMR 6 SR]QDYDQMHP RWURNRYLK VWUDWHJLM REYODGRYDQMD WHåDYODåMHQDþUWXMHPR]GUDYOMHQMHSRGDMDQMHLQIRU- PDFLM LQ SVLKRORãNR SRPRþ 3RPHPEQR MH WXGL da poznamo in prepoznamo neustrezne strategije REYODGRYDQMD VWUHVD NRW VR ]ORUDED DONRKROD LQ drugih psihoaktivnih snovi ter drugetvegane oblike YHGHQMD QSU VDPRSRãNRGRYDOQR YHGHQMH NL VH SRJRVWRSRMDYOMDMRYDGROHVFHQFL
,QWHUDNFLMH]YUVWQLNL
3RGSRUD YUVWQLNRY MH SRYH]DQD ] EROMãLP VSUHMH- PDQMHP EROH]QL SD WXGL ] QLåMR MDNRVWMR GHSUHVLMH ,]NXãQMH NURQLþQR EROQLK RWURN QD SRGURþMX YUVW- QLãNLKRGQRVRYVR]HORUD]OLþQHLQODKNRRPRJRþLMR celo poglobitev pomembnih odnosov. Lahko pa Y RWURNX Y]EXGLMR WXGL REþXWNH VWLJPDWL]LUDQRVWL ]DUDGL QRUþHYDQMD LQ ]DYUDþDQMD V VWUDQL YUVWQL- NRY%ROH]HQODKNRRWURNDPRþQRRYLUDRWURNDSUL YNOMXþHYDQMX Y VRFLDOQH GHMDYQRVWL LQ YRGL FHOR Y RVDPLWHY
âROVNRSRGURþMH
=DUDGL SRJRVWHJD L]RVWDMDQMD RG SRXND RWURN WHåMH VOHGL UHGQL XþQL VQRYL LQ SRVOHGLFD MH ODKNR VODEãL XþQL XVSHK 3ROHJ WHJD PQRJH NURQLþQH EROH]QLLQ QMLKRYR]GUDYOMHQMHYSOLYDMRQDNRJQLWLYQRLQXþQR IXQNFLRQLUDQMH QSU SRYHþDQD XWUXGOMLYRVW XSR- þDVQMHQRVWPRWQMHSR]RUQRVWLLQNRQFHQWUDFLMH 9 WHP SULPHUX MH NOMXþQD NRPXQLNDFLMD ] RWURNR- YLPL XþLWHOML ,]NXãQMH NDåHMR GD MH ]HOR NRULVWQR GDLPDMRYVLXþLWHOMLNLRWURNDSRXþXMHMRþLPYHþ informacij o njegovem zdravstvenem stanju (pred- YVHP R VLPSWRPLK LQ RPHMLWYDK ]DUDGL EROH]QL 3RPHPEQR MH GD RWURN PHG GDOMãR RGVRWQRVWMRY þLP YHþML PHUL Y]GUåXMH VWLNH ] YUVWQLNL LQ RKUDQ- MD XþQR NRQGLFLMR 2E WHåMHP SRWHNX EROH]QL LQ SRJRVWLK L]RVWDQNLK RG SRXND ODKNR VWDUãL Y ãROVNL VYHWRYDOQLVOXåELSULGRELMRLQIRUPDFLMHRPRåQRVWLK SULGRELWYH VWDWXVD GROJRWUDMQR EROQHJD RWURND NL JDRPRJRþD3RVWRSHN]DXVPHUMDQMHRWURNVSRVHE- QLPLSRWUHEDPL6WDWXVGROJRWUDMQREROQHJDRWURND RPRJRþD GRGDWQR VWURNRYQR SRPRþ XþLWHOMHY V NDWHURODKNRRWURNQDGRNQDGL]DPXMHQRãROVNRVQRY ]DUDGLL]RVWDQNRYQDUDþXQEROH]QL2WURNSRWUHEXMH SRPRþWXGLSULL]ELULSRNOLFDVDM]GUDYQLNLJOHGHQD naravo bolezni in zdravljenja morda izbiro nekate- rih poklicev odsvetujejo.
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