KHO KHAN TRONG TIM CACH CHQA TRj CHO CON CUA CHA ME CO CON TLJ KY Nghien ciru n^y duoc tai trp bdi Quy Phat trien Khoa hoc va Cong nghe Quoc gia (NAFOSTED) de tai: Nghien cifu nhiJng kho khan tam ly cua cha me c6 bi ttf k^ Ma s5: VI1.6-2013.21; PGS.TS Di/ong Hai Hrnig lam chu nhiem PGS.TS Di/ong Hai Htmg GS.TS Tran Quoc Thanh Trudng Dai hpc Supham Ha Ndi TOM TAT Bai bao irinh hay ket qua khao sal kho khan ciia cha me co lu ky a tinh ciia Vi^l Nam Ket qua khao sal cho thay kho khdn cua eha me co ttr ky khd da dgng lir nhung kho khan viec lim kiem cdc nguon cung cdp cdc In ihuc ve benh lu ky su hieu biet ve nhung vdn de lien quan den benh den nhirng kho khdn Irong vi^c hieu biel ve cac ca sa in lieu vd gido due tre (u ky vd tim kiem sir ho lr(r cua nhirng ngirdi xung quanh Trong khd khdn ldn nhdl cua cha me cJ tu ky ndy sinh viec tim hieu ve cdc ca sa chdm sdc gido di4c ire lu ky vd ho it gdp khd khdn nhdl viec tim kiem sir ho tra cua nhirng ngirdi xung quanh Tir khoa: Khd khan: Cha me co tu ky Ngay nhgn bdi 5/12/2016; \'gdy duy^t ddng hdi 25/12/2016 ABSTRACT The article presents results from a survey on difficulties experienced by parents of children with autism in provinces and cities in Vietnarti The result showed that parents of children with autism have experienced a variety of difficulties, including lho.se associated with searching information about autism, understanding about treatment and education centers of children with auti.sm and in seeking support from people around Among ihem the biggest difficulty of parents of children with autism emerges from seeking centers where offer care and education to children with autism, and the smallest one results fi-om seeking support from people around Key words: Difficulty: Parents of children with autism TAP CHI TAM LV HOC, S6 (214), 1-2017 61 Dat van dc Con la mdt gia tri cua cac gia dinh Vict Nam Con truimg \di nhicu cdng sc la niem tu hao ciia cha me cdn ed khuydt lat ho^c that bai cudc ddi sc la ndi dau niem Iran trd cua cha mc Ndi dau the hien dSc biet rd d cac bac cha me cd mac hdi chimg lu k\' ma tinh hinh hien chjc chin hp gap khdng il khd khan vice tim each cai thien tinh Irang henh cua ITiuc trang nhiing khd khan eiia cha me cd ty k\ ir Viet N.im nhu the nao bidu hicn \a mue ehua dupc nghidn ciiu mpt each he thdng Trong chua xae dinh rd dupc nguyen nhan ciia tre ty k\ \ iec nghien cuu de \ac dinh thyc trang nhung khd khan cua eha mc cd ly ky chi cac mirc dp khd khan \ a e,ie \ eu Id dan den cac khd khan dd eua cha me cd bj ty ky d nudc la hien m\\ \an la eau hdi can cd ldi giai dap thda dang Vi \a> vice nghien cuu cac bieu hicn khd khan ciia eha mc cd ty ky dc cii bien phap Irp giiip hp khac phuc \a giam Ihieu nhirng khd khan qua trinh nd lye lim each cai Ihicn linh Irang benh eua la rat can Ihiel Khach the va phirang phap nghien cdu Nghien cim khao sat tren 1.000 cha mc cd ly ky lai phd Hd Chi Minh Can Tho Da Nang Hue Ha Ndi \a Cao Bang Phuong phap ehu > cu dupc sir dung la phucmg phap dieu tra bang bang hoi phdng van sau Do dicu kicn tiep \ue han che nen ehung tdi chl thyc hicn vdi rndi gia dinh cd ly k\ cudc phdng \-an (mdt cupc phdng van bang phieu khao sat dinh lutmg, mpt cupc phdng \an sau) Npi dung cac cupc phdng \an (phieu hdi \a phdng \an sau) \oa} quanh cac khd khin lim each chira Iri cho eon cua cha mc cd ly k\ S,iu lam sach phieu sd phieu dupe dua vao \(i ly la 1.000 phidu Cac sd lieu Ihu dupc dupc \ u ly bang phan mdm Ihdng ke SPSS 16.0 Caeh tinh diem nhu sau: Khd khan: didm; Jl khd khan: didm; Khdng khd khan: dicm Diem Irung binh (DTH) la trung binh cdng cac >' kidn tra ldi cua lit ca khach the mau nghien ciru Thirc trang khd khan tim each chu-a trj eho eon ciia cha mc co ty k\ Khd khan tim each chOa trj cho eon ciia eha mc cd ty kv cd ihc dupc hieu la lai ea nhung gi gay trd ngai cho cae bac cha mc thyc hicn hoat ddng n i \ Nhirng khd khan nhu vay rSt da dang, cd the la tim kicm cac thdng lin \c benh ly ky dd ho cd thd hidu rd xd ban chdt benh \a bidt each eham sdc Irong \ lee hidu bidt vd cae co sd chCia trj \'ii cham sdc tre ty k\ Irong tim kicm sy hd trp cua nhirng ngudi sung quanh ^- TAPCHfTAMLyHOC,S' a tren kho khan Icm nh^l ctia cac cha me co nr ky la hp khong tim du-ac nhtmg CO so chuyen mon day cho ho biet each cham soc ire nr k\ Cha mc co bi tu ky chi co th6 tu hpc hoSc hpc thong qua cac buoi hpi thao Vi \ a\ cac bac cha me r^t thidu nhihig kien thiic \ a ky nang can thiet vice cham soc cho ctia hp Va du da duac hpc \c van de na\ ihi viec tjmg dung vao thuc lien cupc song cung vln la mot thach thuc doi vol rat nhieu ngucri co tu ky Nen dieu de hicu la cac bac cha me gap kho khan nhieu nhat la npi dung Khi bj benh, bat ky cha me nao cung quan lam tim each chua tri cho Tuy nhien, benh tu ky la mpt benh duac biel den rong rai a nuac ta chi khoang thai gian han chuc nam tra lai day Lien quan den loai benh tri thiic cua gidi chuyen mon \c nguyen nhan ctia benh cGng nhu each thiic cham soc chua tri cho tre bi benh cung chua that sau sac Vi \'a\' nhieu bac cha mc CO tu ky rat ban kho^n "khong biel lieu co d& benh khong" Ben canh do, hien chua co thang cac miic dp benh cua irc tu ky mpt each cu the, chi tiet nen cha me cua tre tu ky rat kho biet dupc tinh trang va dicn bien benh etia minh Vi vay hp phai dua den cac trung tam ty ky va phu thupc vao phan doan cua cac chuyen gia a trung tam Tren thuc le la hicn nhieu bac cha mc gap kho khan vice chap nhan su that minh bi benh tu ky Dieu na\ da can Ira hp vice hicu vc benh linh eua thong qua dutmg trao doi vai bac si va cac ehuyen gia vc cac thong tin hp can biet vc tre tu k> Ban dau nhicu nguai xau ho phai trao doi vc benh ciia vai ngutii khac vi hp khong hieu % c nguyen nhan ciia benh tu ky Hp cho rang, minh khong biet nuoi day nen dc bi benh Nhicu ba me cam thay minh co loi sinh \ a mac benh Mpt ba mc co eon tu ky a Can Tho chia sc: "Mdc ca muon chet phdi noi chuyen ve benh cua vol ngiroi ta Con ngirai ta khoe manh chai diia vui ve, minh ci'r ngoi li mot cho Vira thirang con, vira gian minh vd vira tdi than"" I am !y c ngai da ly giai tai nhicu cha me co lu k> rat kho khan chap nhan su that ve tinh trang benh ciia minh tir gap kho khan chia se ihong tin vc benh ctia vai nhung nguoi co chuyen mon va cung bi han che ticp nhan cac tri thiic vc loai benh '\\\\ nhien duac lu van va da irai qua mot thai gian cham trach nhiem cham soc va linh thuong yeu da giiip hp vuot qua duac nhiing e ngai lam !y ban dau Co the noi ring, chii yeu giai doan Ire moi mac benh cac bae cha me mai gap nhi^u kho khan phai trao doi true ticp vai nhiing nguoi co chuyen mon ve hpi chiing tu ky va lo ngai \ icc cham soc tre cung nhu luimg lai TAP CHI TAM LV HOC, SO'1 (214), I -2017 65 3.3 Khd khdn viec hiiu biii vi cdc ca sa Iri lieu gido due Ire ttr ky Sd lieu bang cho lha\ cha mc cd eon ly k\ gap kha nhieu khd khan irong viec hidu bidt \c eac ca sd trj lieu \a giao due tre ty ky Kho khSn Idn nhjt cua hp la phdi hpp \di nhan vidn tri lieu Thyc trang na\ cd the la cha me cd bj ty ky chua cd kidn thuc \c vice cham sdc tre ly k\ lai cd tam ly c ngai chia se thdng tin vd tinh Irang benh cua ddng thdi chua nhan thirc dupc tSm quan trpng \ icc phdi hpp vdi nhan \ icn trj lieu Nhicu cha me cd bj ty ky quan niem rang, minh khdng bicl gi v e benh ciia thi cu giao eho cac co sd cae nhan \icn tri lieu la \en tam Tuy nhien thyc ticn chiia tri cho tre ty ky cho thii\ nhiJng cha mc chap nhan bj benh \ a phdi hpp tdt \di nhan \ icn chuyen mdn thi ed the giiip cho trd bdt benh rat nhieu Bdng 3: Mirc dp khd khdn cua cha me Irong viic hiiu biit cdc ca s& tri Heu vd gido due tri tir ky STT Cac klio khan hicu b i d vc cac co' so' tri H('u cho tre DTB Up Ihong cac i r u n t lam Ire tir ky gan nai tre sinh song 2.58 Kho khSn \ icc lim kicm ihonu lin vc trung lam 2.27 Kho khan irong \ icc tim hicu dgi nuQ giao vicn 1.64 Kho khan irong \ icc Iim hicu Irang thicl bi cua Irung lam 1.72 Kho khan Irong \ icc phoi hop voi nhan vicn In lieu 2.62 Kho ticp can chuong Irinh giao dye tre cua Irung liim 2.47 l i m dir^c nai minh tin tucmg dc giii 2,13 Khong bicl hp doi xir vdi minh the nao 2,33 lieu vc each cac Irung lam sc chira Iri minh 2,49 Mdt khd khan khac sinh \ icc cac bac cha me mong mudn lim dupc eac Irung lam chua Irj \ a cham sdc trd ly ky d gkn noi Ire sinh sdng Trong qua trinh nghien ciru nhdm nghien cum nhan thay: phan Idn tre ty ky vd cac trung lain d phd Ild Chi Minh Da NSng I lud Ila Npi Cin Iho ddu la nhimg dira tre dupc dua den tir eac tinh xa Didu cd thd cha mc cd tu ky mudn giau mpi ngudi khdng mudn cho nhirng ngudi than quen bidt minh cd ty k\ Trong ndu hp giii d nhirng co sd gan nai sinh sdng se rit thuan lpi eho \ icc phdi hpp cham sdc vii tri lieu eho tre 66 TAP CHi TAM LV HOC, S d i (214), I -2017 Cha mc ire tu k\ gap nhidu kho khan \iec ticp can cac chuang Irinh giao due eiia eac trung lam nhan cham soc Ire lu k\ Dicu co the nhung \ eu eau nghe nghiep hoac K' rieng ciia timg trung lam nen cac cha me CO tu ky kho li6p can chuang trinh ctia trung tam Day la mot kho khan co the ga\ tra ngai \an cho \icc bien kicn thiic cham soc va giao due Ire tu k\ cung nhu u-ong \ iec phoi hop giOra trung tam \a gia dinh Irong \ iec cham soc tri lieu cho trt: tu ky Kho khan ma cha mc co tu ky it gap han la \ icc lim hieu dpi ngu giao \ien va cac trang thict bj etia trung tam Dieu na\ co the giai thich la lap cac trung tam giao due tre lu ky nhung ngucri quan 1\ trung tam thuimg quang cao trung tam ciia minh nen dpi ngu giao vien va co so vat chat thuong duac giai thieu ro Mpt ba mc cho met: "Cdc nhdn vien cua frung tdm Minh Tri deu rat nhe nhdng ldm ly vd kien tri cdc hogt dong cling ldi rdt yen ldm vdi doi ngu nhdn vien cua trung ldm" Qua tim hieu nhoin nghien ciiu ctia chiing loi nhan thay de duac nhan vao lam \icc lai cac trung lam cham soc giao due irc tu k\ thi cac iing \icn phai co long yeu nghe va kien nhan Vi va\, phan Ion nhan \icn deu dupc iu>cn chpn kTcang 3.4 Khd khim viec fim kiem sir ho tra ctia nhifng thdnh vien gia dinh vd nhirng ngiriri vung quanh Bdng 4: Kho khdn cua cha me co bi tu ky viec lim kiem su ho tra cua nhirng thdnh vien gia dinh vd nbung ngirai xung quanh STI ( ac liho khan vice l i m Idem sir ho t r o cua nhirng Ihiinh vicn gia d i n h \ a nhirng ngirtri xung quanh DTB Khong muon piup minh \ i iigai co Ihc bi lay 1.40 Khong dam dira Ihain ong b j rioi'ngoai vi sa ong ba khong vui 1.27 Khong diim dira \ c I ham gi;i dmh cha mc dc \ i sa cha mc khong vui I.IO Khong d.-im noi vc inoi gap ban be nguai Ihan 1.23 Cac ca so chSm soc tre lir k> khong bien kien Ihiic cham soc \ i stj mAt kh.ich 1.77 Khong bicI each nhirng khong dam hoi 1.47 t i i a dinh khdng ihong cam nhung khong bicl cach ciai thich 1.27 V a chong khong thdng nhai irong \ icc dira den Irung lam cham soc tre 1.33 TAPCHITAMLyHOC Sd I (214) I -2017 67 Tir cac sd lieu d bang cd the thay vide tim kicm sy hd trp ciia nhimg ngudi xung quanh bao gdm ca nhimg ngutri than gia dinh thi cha mc cd ly k> khdng gap nhieu khd khan Cd lc hicn na> nhicu ngutri cung da cd nhirng hieu bicl nhat djnh \e loai benh cung nhu tinh tucmg ddi phd bien eiia nd va cdng lac lru\en thdng phdng chdng ki thj ddi vdi trd ty kv ndi rieng ddi vdi nhirng ngudi mac phai mdt sd loai benh khac ndi chung da dupc cac CO quan ehue nang \ a cac td chirc \a hdi thyc hicn thudng xuyen \ a rdng khap nen cha me cd ty ky it gap khd khan vice lim kiem sy hd trp tir nhiing ngudi xung quanh Ket luan Phan tieh kcl qua khao sat Ircn cho thay tat ea cac cha me ed eon ty kv deu gSp khd khan vice hicu biel va eham sdc Irc ty ky Cac khd khan cua cha mc cd ly k\ kha da dang, lir nhimg khd khan vice tim kicm cac ngudn eung cap cae tri thue \c benh tu k> sy hieu biel \c nhimg \an dd lien quan den benh den nhiing khd khan vice hicu bicl vc cae ca sd trj lieu va giao due trd ty ky va tim kicm sy hd trp cua nhiing vien gia dinh va nhimg ngutri xung quanh Trong dd khd khSn ldn nhk cua cha me cd ly k\ sinh vice tim hicu vc cac ca sd cham sdc giao due Ire ly ky va hp it gap khd khan nhat \ ice lim kiem sy hir trp eua nhimg \ ien gia dinh \a nhiing ngudi xung quanh Tai lieu tham khao 1 -c Khanh Tie tu ky - Xhirng thien thdn hdt hanh NXH Phu nil 2004 Quach ThiiN Minh lidi ddp vi henh lu ky NXH Y hpe, 2009 Vu Thu Trang Khd khdn kim ly eua cha me ed tu h: Tap chi I am Iv hoe S6 12/2015 • Atllield v and Morgen IT Living vilh autistic Speclriini disorder Sage/Pauld Chapman Puhliealions London 2006 Miles J.IL Takahishi I N liagbx S Sahola P.K Vaslow D.F Wang C' IL Millman R T and Fanner J.K livential versus complex aiiti.'.m Delinition offundamenliilprognm viAvy/ej American Journal oTMedical Oenetics 135 pp 171 - 180.2005 Plimicy L and Rowen M ^iili.iiic Spectrum DLioiders in the Secondary School Paul Chapman Publishing London 2006 Plimley 1., Bowcn M and Vliirgan 1L Aiilislic Spectrum Di.wrders m the early in;, i Paul Chapman Publishing London 2007 Seheuemiann U and Webber J Aiili.im - leaching Doei Make u Dillerence Wadsworth Oroup Canada 2002 6X TAPCHiTAMLVHOCSdl (214), -2017 ... ta Con ngirai ta khoe manh chai diia vui ve, minh ci'r ngoi li mot cho Vira thirang con, vira gian minh vd vira tdi than"" I am !y c ngai da ly giai tai nhicu cha me co lu k> rat kho khan chap... day cho ho biet each cham soc ire nr k Cha mc co bi tu ky chi co th6 tu hpc hoSc hpc thong qua cac buoi hpi thao Vi a cac bac cha me r^t thidu nhihig kien thiic a ky nang can thiet vice cham... tim each chu-a trj eho eon ciia cha mc co ty k Khd khan tim each chOa trj cho eon ciia eha mc cd ty kv cd ihc dupc hieu la lai ea nhung gi gay trd ngai cho cae bac cha mc thyc hicn hoat ddng n