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) trong de tai: Nghien cifu nhiJng kho khan tam ly cua cha me c6 con 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 con lu ky a 6 tinh.
thanh pho ciia Vi^l Nam. Ket qua khao sal cho thay. kho khdn cua eha me co con ttr ky khd da dgng. lir nhung kho khan trong viec lim kiem cdc nguon cung cdp cdc In ihuc ve benh lu ky. trong .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 do. khd khdn ldn nhdl cua cha me cJ con tu ky ndy sinh trong viec tim hieu ve cdc ca sa chdm sdc gido di4c ire lu ky vd ho it gdp khd khdn nhdl trong viec tim kiem sir ho tra cua nhirng ngirdi .xung quanh.
Tir khoa: Khd khan: Cha me co con 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 6 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 1 (214), 1-2017 61
1. Dat van dc
Con la mdt gia tri cua cac gia dinh Vict Nam. Con truimg thanh \di nhicu thanh cdng sc la niem tu hao ciia cha me. cdn khi con ed khuydt lat ho^c that bai trong cudc ddi sc la ndi dau. niem Iran trd cua cha mc. Ndi dau nay the hien dSc biet rd d cac bac cha me cd con mac hdi chimg lu k\'. khi ma trong tinh hinh hien nay. chjc chin hp gap khdng il khd khan trong vice tim each cai thien tinh Irang henh cua con. ITiuc trang nhiing khd khan eiia cha me cd con ty k\ ir Viet N.im nhu the nao. bidu hicn \a mue do ra sao ehua dupc nghidn ciiu mpt each he thdng. Trong khi 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 con ly ky. chi ra cac mirc dp khd khan \ a e,ie \ eu Id dan den cac khd khan dd eua cha me cd con 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 con ty ky dc cii bien phap Irp giiip hp khac phuc \a giam Ihieu nhirng khd khan trong qua trinh nd lye lim each cai Ihicn linh Irang benh eua con la rat can Ihiel.
2. Khach the va phirang phap nghien cdu
Nghien cim khao sat tren 1.000 cha mc cd con ly ky lai thanh 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 con ly k\ 2 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 trong lim each chira Iri cho eon cua cha mc cd con ly k\.
S,iu khi 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: 3 didm; Jl khd khan: 2 didm; Khdng khd khan: 1 dicm. Diem Irung binh (DTH) la trung binh cdng cac >' kidn tra ldi cua lit ca khach the trong mau nghien ciru.
3. Thirc trang khd khan trong tim each chu-a trj eho eon ciia cha mc co con ty k\
Khd khan trong tim each chOa trj cho eon ciia eha mc cd con ty kv cd ihc dupc hieu la lai ea nhung gi gay trd ngai cho cae bac cha mc trong thyc hicn hoat ddng n i \ . Nhirng khd khan nhu vay rSt da dang, cd the la trong tim kicm cac thdng lin \ c benh ly ky dd ho cd thd hidu rd xd ban chdt benh \a bidt each eham sdc con. 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<i I (214), 1 -2017
Sau da\ la mdi sd bidu hien cu thd cua nhirng dang khd khan neu tren.
3.1. Khd khan trang hiiu biet vi cdc ngudn cung cdp kien Ihirc ve henh vd cdch cham sdc Ire lir ky
Kdt qua thu dupc bang 1 cho thay. eha mc ed con ly ky gap khd khan trong \ ice tim hicu ngudn thdng lin giup hp cd kicn thirc ve benh va biel each cham sdc tre ty ky d muc trung binh. Khd khan Idn nhat ma cac bac cha me gap phai trong tim kicm cac ngudn cung cap thdng tin lidn quan den hdi chimg ty ky la tim dupc cac cp sd tin cay day cho hp biet each eham sdc Ire ty ky.
Hicn nay. cac trung tam da\ Ire ty ky rat nhieu nhung eae lap hpc day cha mc Ire each cham sdc tre ty k\'. nhirng thdng tin phd bien kicn thirc. kinh nghiem eham sde. nudi duong day Ire ty ky hau nhu rat it. Vi \a>. hp \an gap nhieu khd khan lien quan den van dc na\.
Bdng I: Nhirng khd khdn trong hieu hiit vi cdc ngudn cung cdp kien thirc vi binh vd cdch chdm sdc tri tu k\'
S T T 1 2 3 4 5 6 7 8 9 10 I I 12 13 14
15
Cae nguon cung cap kicn thirc, thong tin vc benh tu* kv Cac buoi hpi thao vc chain soc ire ttr kv
Cac lap lap huan danh cho cha me co con Hr k\
Cac tranji web ve tre l u kv Sach. lai lieu vc tre t u ky Lai khuvcn cua gia dinh Nhirni; ban be than thict
Nhunp npuai co kmh njihiem dan jiian Trao doi vai njiuai cunc co con l u k\
C h u j c n jiia lani Iv
T i m kicm cac Uii licii \ lel vc ire tu ky Cac thonp tm \ c lie tu ky tren mani; xS hoi 1 rao doi voi nhunji npuai Minp quanh Trao doi vai thay co giao day trc
Kien thuc vc benh t\r ky dupc pho bien tren phuong ticn thong tin d9i chijnp
\(Ti da\ \ c each eham soe tre tu kv
D T B 1 1 n
2 2 1 I 2
:
2 T
1 1
2
2 89 71 29 21 19 96 68 24 02 05 04 21 01 18
.19
TAP CHi TAM Lf HOC, Sd I (214), I -2017 63
Hien nay d nudc ta. vim di tre ty ky cung da dupc quan tam nhicu. Co kha nhidu'kidn thirc vd benh tu k< Ircn cac phuong lien thong tin dai chung hoJc trong cac saeh. tai lieu. Tuv nhien, ed the do nhihig dicu kien cu the nhu khong Ihdng thao trona sii dung may tinh, chua biet each tra ciJru nen cac cha me gap khdng it khd khin yong tim kidm thdng tin tren cac trang web va trong sach bao.
Ddng dioi cung cd thd vice phd bidn cac kien thirc ve tre ty ky chua phu hpp nen eac cha me ed con tu kv gip khd khan Uong viec tim kiem thdng tin d cac ngudn nay. Mdt ngudi me cd con bj benh ty ky d Da Nlng chia se'."Khi biit con bi tu ki'. moi ngir&i trong gia dinh bdt ddu quan Idm va lim hiiu vi cdn binh nay. Tuy nhiin, ehtrng tdi cdng tim cang thdy ma mit vd roi lung lin"
Cac bae cha me eung gap nhieu khd khin trorig viec tim dupc cae chuyen gia tam Iv ha\ nhitng nguiii ciing cd con bj tu ky dd cd them hieu biet ve b?nh ty ky. 1 UN nhien. tren thyc id. ngay ca cac nha nghien ciru chuyen sau curig ehua xae djnh dupc mpt each rd rang cac nguyen nhan cua tre tu ky nen hieu bidt cua hp cung cd ban. hp khd cd thd eung eSp cho cha me cd con ty ky nhiJng ldi khuyen that cu the.
Vdi cac ngudn cung cap thdng tin khae. cha me cd con tu ky cung gSp khd khin nhung d mirc dp it hon. Vi qua tim hidu, nhdm nghien cuu thay rSng, viee phd bidn eac kidn Uiue ve tre ty ky ngay nay eung kha rpng rai vdi nhieu hinh thirc khac nhau. Vi vay, cac cha mp cd con ty ky cd nhidu ca hpi tim hieu. Tuy nhien, cd thd do m^c cam, khdng mudn ngudi khac biet minh ed cpn ty ky ndn hp cflng ngai cdng khai tim hidu, do dd hp van gap nhimg khd khSn nhat djnh.
3.2. Kho khan ciia cha m( Irong vifc hilu vi bfnh ttt ky vd each chim sdc con
Kdt qua khao sat vc khd khSn nay the hien qua sd li?u d bang 2.
Bdng 2: Muc dp khd khdn ciia cha mf trong viic hiiu vi binh tu ky vd cdch chdm soc con
STT 1
-
3 4 5 6 7 8
Cac klio ktiin trong vice hieu ve bfnti tir \cy va cacti ctiSm soc con 1 lieu vc iiRuyen nhan Ire lir ky
Khong r(5 lieu con co bdi benh khong Trao doi vdi cac bac sT Trao doi vdi cac chuyen gia lam Iy ChSm soc Ire Iv ky
Thirong con nhirng khong biet lam the nao chSm con Khong bicl con muon gi de dap ling
Khong bicl con nght gi de day no
DTB 2,29 2,57 2,33 2,33 2,75 2,20 2,00 2,53
64 TAP C H I T A M LV HC)C, Srf 1 ( 2 1 4 ) , I - 2017
S6 li?u bang 2 cho th^y. nhin chung. cac bac cha me co con tu k\ gap kha nhieu kho khan trong hi6u vh benh ttr ky va each cham soc con. Nhir da trinh ba>' a tren. kho khan Icm nh^l ctia cac cha me co con 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 con 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 trong vice cham soc cho con 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 con tu ky.
Nen dieu de hicu la cac bac cha me gap kho khan nhieu nhat la 6 npi dung nay.
Khi con bj benh, bat ky cha me nao cung quan lam. tim each chua tri cho con. Tuy nhien, benh tu ky la mpt benh duac biel den rong rai a nuac ta chi trong khoang thai gian han chuc nam tra lai day. Lien quan den loai benh nay.
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 con tu ky rat ban kho^n "khong biel lieu con co d& benh khong". Ben canh do, hien nay chua co thang do 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 con minh. Vi vay. hp phai dua con den cac trung tam ty ky va phu thupc vao phan doan cua cac chuyen gia a trung tam.
Tren thuc le la hicn nay nhieu bac cha mc gap kho khan trong vice chap nhan su that con minh bi benh tu ky. Dieu na\ da can Ira hp trong vice hicu vc benh linh eua con thong qua con 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 khi phai trao doi vc benh ciia con vai ngutii khac vi hp khong hieu % c nguyen nhan ciia benh tu ky. Hp cho rang, do minh khong biet nuoi day con nen dc con bi benh. Nhicu ba me cam thay minh co loi khi sinh ra con \ a con mac benh. Mpt ba mc co eon tu ky a Can Tho chia sc: "Mdc ca muon chet khi phdi noi chuyen ve benh cua con vol ngiroi ta. Con ngirai ta khoe manh. chai diia vui ve, con minh ci'r ngoi li mot cho. Vira thirang con, vira gian minh vd vira tdi than"". I am !y c ngai do da ly giai tai sao nhicu cha me co con lu k> rat kho khan khi chap nhan su that ve tinh trang benh ciia con minh. tir do gap kho khan trong chia se ihong tin vc benh ctia con vai nhung nguoi co chuyen mon va cung bi han che trong ticp nhan cac tri thiic vc loai benh nay. '\\\\ nhien. khi duac lu van va da irai qua mot thai gian cham con. trach nhiem cham soc con va linh thuong yeu con da giiip hp vuot qua duac nhiing e ngai lam !y ban dau. Co the noi ring, chii yeu 6 giai doan khi Ire moi mac benh. cac bae cha me mai gap nhi^u kho khan khi phai trao doi true ticp vai nhiing nguoi co chuyen mon ve hpi chiing tu ky va lo ngai trong \ icc cham soc tre cung nhu luimg lai.
TAP CHI TAM LV HOC, SO'1 (214), I -2017 65
3.3. Khd khdn trong viec hiiu biii vi cdc ca sa Iri lieu ra gido due Ire ttr ky
Sd lieu bang 3 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 do cha me cd con bj ty ky chua cd kidn thuc \ c vice cham sdc tre ly k\. lai cd tam ly c ngai trong chia se thdng tin vd tinh Irang benh cua con. ddng thdi chua nhan thirc dupc tSm quan trpng trong \ icc phdi hpp vdi nhan \ icn trj lieu. Nhicu cha me cd con bj ty ky quan niem rang, minh khdng bicl gi v e benh ciia con 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 con 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
S T T 1 2 3 4 5 6 7 8 9
Cac klio khan trong hicu b i d vc cac co' so' tri H('u cho tre Up Ihong cac i r u n t lam Ire tir ky gan nai tre sinh song Kho khSn trong \ icc lim kicm ihonu lin vc trung lam Kho khan irong \ icc tim hicu dgi nuQ giao vicn Kho khan irong \ icc Iim hicu Irang thicl bi cua Irung lam Kho khan Irong \ icc phoi hop voi nhan vicn In lieu Kho ticp can chuong Irinh giao dye tre cua Irung liim l i m dir^c nai minh tin tucmg dc giii con Khong bicl hp doi xir vdi con minh the nao 1 lieu vc each cac Irung lam sc chira Iri con minh
D T B 2.58 2.27 1.64 1.72 2.62 2.47 2,13 2,33 2,49
Mdt khd khan khac nay sinh trong \ 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 thanh 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 nay cd thd do cha mc cd con tu ky mudn giau mpi ngudi. khdng mudn cho nhirng ngudi than quen bidt minh cd con ty k\ Trong khi ndu hp giii con 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\ con gap nhidu kho khan trong \iec ticp can cac chuang Irinh giao due eiia eac trung lam nhan cham soc Ire lu k\. Dicu nay co the do nhung \ eu eau nghe nghiep hoac K' do rieng ciia timg trung lam nen cac cha me CO con tu ky kho li6p can chuang trinh ctia trung tam. Day la mot kho khan co the ga\ tra ngai \an cho \icc pho 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 con 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 khi thanh 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 trong cdc hogt dong cling con.
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 trong 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 con bi tu ky trong viec lim kiem su ho tra cua nhirng thdnh vien gia dinh vd nbung ngirai xung quanh
S T I
1 2 3 4
5 6 7 8
( ac liho khan t r o n g vice l i m Idem sir ho t r o cua nhirng Ihiinh vicn gia d i n h \ a nhirng ngirtri xung q u a n h Khong ai muon piup minh \ i iigai co Ihc bi lay
Khong dam dira con Ihain ong b j rioi'ngoai vi sa ong ba khong vui Khong diim dira con \ c I ham gi;i dmh cha mc dc \ i sa cha mc khong vui Khong d.-im noi vc con inoi khi gap ban be. nguai Ihan
Cac ca so chSm soc tre lir k> khong pho bien kien Ihiic cham soc \ i stj mAt kh.ich
Khong bicI each nhirng khong dam hoi ai
t i i a dinh khdng ihong cam nhung khong bicl cach ciai thich
V a chong khong thdng nhai irong \ icc dira con den Irung lam cham soc tre D T B
1.40 1.27 I.IO 1.23
1.77
1.47 1.27 1.33
TAPCHITAMLyHOC. Sd I (214). I -2017 67
Tir cac sd lieu d bang 4. cd the thay trong vide tim kicm sy hd trp ciia nhimg ngudi xung quanh. bao gdm ca nhimg ngutri than trong gia dinh thi cha mc cd con ly k> khdng gap nhieu khd khan. Cd lc. hicn na>. nhicu ngutri cung da cd nhirng hieu bicl nhat djnh \ e loai benh nay 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 con ty ky it gap khd khan trong 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 trong vice hicu biel va eham sdc Irc ty ky. Cac khd khan cua cha mc cd con ly k\ kha da dang, lir nhimg khd khan trong vice tim kicm cac ngudn eung cap cae tri thue \c benh tu k>. trong sy hieu biel \ c nhimg \an dd lien quan den benh den nhiing khd khan trong vice hicu bicl vc cae ca sd trj lieu va giao due trd ty ky va tim kicm sy hd trp cua nhiing thanh vien gia dinh va nhimg ngutri xung quanh. Trong dd. khd khSn ldn nhk cua cha me cd con ly k\
nay sinh trong vice tim hicu vc cac ca sd cham sdc giao due Ire ly ky va hp it gap khd khan nhat trong \ ice lim kiem sy hir trp eua nhimg thanh \ ien gia dinh
\a nhiing ngudi xung quanh.
Tai lieu tham khao
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6. Plimicy L. and Rowen M.. ^iili.iiic Spectrum DLioiders in the Secondary School.
Paul Chapman Publishing. London. 2006.
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6X TAPCHiTAMLVHOCSdl (214), 1 -2017
