KHO KHAN TAM LY
CUA CHA ME CO CON TU KY
Nghien ciru nay ditoc tai trg bcii Quy Phat trien Khoa hpc va Cong nghe Quoc gia (NAFOSTED) trong dS tai: Hghien ciru nhung kho khan tam ly cua cha me co con bi ttf ky, Ma so v n .6-2013.21; TS. Duong Hai Himg lam chij nhiem.
NCS Vu Thu Trang
Khoa Tdm ly - Gido due, Hpc vien Khoa hpc xd hot.
I
TOM TAT
Bdi bdo Irinh bdy quan niem khde nhau ve tre tu ky. tiip cdn lim hiiu khd khdn tdm ly cua cha me co con tu ky vd dua ra quan niim cua cdc tdc gid trong vd ngodi nu&e ve khd khdn ldm ly cua cha me co con lu ky. Tren ca s& dd, budc ddu cd the xdc dinh duac 4 mite do kho khdn tdm ly cua cha me cd con lu ky. chi ra cdc bleu hiin cu the cua titng mirc dp kho khdn giiip cho nhd nghiin citu co Ihi nhdn diin duac cdc khd khdn tdm ly a cha me cd con lu ky.
Tir khoa: Khd khdn ldm ly; Cha me cd con lit ky; Tit ky.
Ngdynhdnbdi: \6/\l/20\5-, Ngdy duyel ddng bdi 25/11/2015.
1. Dat van de
Trong nhtrng n a m g i n day, s6 lugng tre tu ky tren the gidi cting nhu g nuoc ta tang nhanh, dung n h u nhan xet cua Tanoue: "Dii the nao di nOa, chung ta khong t h i phu nhan r i n g , ty le tre t u ky dang thyc su tang frong thoi gian g i n d a y " [8]. Nguyen nhan d i n toi hgi chiing ty ky chua dugc xac djnh, tiiy theo trieu chiing, tre co t h i m i c t u ky 6 cac muc dp khac nhau: Tii' thieu nang fri tue cho d i n co mpt s6 kha nang khac thuomg, co nhung tre di hgc va sinh hoat binh thuomg nhung cung co tre su6t doi phu thupc vao b6 me va ngucri cham soc (Miles, 2005) [2]. Hpi chiing ty ky anh hucmg Ion d i n hpc tap, siiih hoat va phat t r i i n nhan each cua t r i , lam giam chat lugng s6ng cua tre, tieu ton ngu6n lyc tai chinh cua gia dinh va xa hgi. Dac biet, d6i voi nhirng gia dinh co fre tit ky, hp gap phai r i t n h i i u khp khan, nhitng khp khan trong cuoc s6ng gia dinh va giao tiep vol cgng dong.
2. Kho khan tam ly ciia cha me co con t y ky va cac bieu hien ciia chiing
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2.1. Kho khdn tdm ly cda cha me co con ttr ky 2 }.J. Khdi niem
Vdi mdt dua tre binh thudng, qua trinh giao due va cham sdc con da khien cha me nhieu Idii cam thay met mdi va cang thang. Vdi mdt dua tre khuyet tat nhu tre tu ky thi su met mdi va khd khan dugc nhan len gkp nhieu lan. Wall Kate [9] da tdng ket, nhung khd khan ma tre tu ky phai ddi mat gdm: Bi tay chay, xa lanh ciia xa hdi; That nghiep; Thieu thdn su giao tiep xa hdi va ban be; Bi bat nat d trudng va bi Iam dung d thdi tha au; La nan nhan ciia tgi pham;
Nhu cau khdng dugc dap irng day du; Han che ve ddi sdng rieng tu.
Tir each higu kho khan tam ly ndi chung la nhirng yeu td, dac diem tam ly can trd boat ddng ciia con ngudi, cd thg dua ra each hieu ve khd khan tam ly cua cha me co con tu ky nhu sau:
Kho khdn tdm ly cua cha me co con tu ky la nhungyeu to, dgc diem tdm ly cua cha me do co con khuyet tdt ldm cdn tra quan he cua cha me v&i con cdi, den hieu qud cua viec trp- giup vd nuoi duang con cung nhu dnh hu&ng khong tot den quan he cua cdc thdnh vien trong gia dinh vd nhicng ngu&i xung quanh.
Bieu hien cua khd khan tam ly rat da dang song tap trung d ba mat la nhan thuc, cam xiic va hanh vi. Trong dd, kho khan ve mat cam xiic cd anh hudng rat ldn den sue khde cita cha me va bau khdng khi tam ly trong gia dinh, do vay cd tac ddng den hieu qua ciia su tien bg cho tre tu ky.
2.1.2. Bieu hien kho khdn tdm ly cua cha me co con tuky
Cd the xae dinh cac bigu hien khd khan tam ly cua cha me cd con tu ky theo cac khia canh sau:
a. Khd khan ve mat nhan thirc
Wall Kate [9] nhan dinh rang, tuy chiing ta dang sdng trong thdi dai ma thai dp chap nhan sir khae biet cdi md, thdng thoang han. Tuy vay, ddi vdi nhfl-ng tre khuyet tat nhu tre tu ky, viec xa hdi chap nhan va cho chiing hda nhap vdi edng ddng la mgt qua trinh lau dai. Nhu:ng bieu hien va trieu chung tu- ky bat dau duge nhan dien tir nam 1943 nhung eho den eudi nhirng nam 70 thi cae chuang trinh giao due cho tre tu ky mdi duge bat dau trien khai. Ngay ca hien nay, trong the ky XXI, hieu biet ciia xa hdi ve tu ky cung cdn kha khiem tdn, nhat la d cac nudc dang phat trign. Cd thg ndi, cac dich vu chan doan, hd trg tre tu ky phan ldn tap trung d cac thanh phd ldn. Do do, su khd khan ve nhan thirc ciia cha me cd con tu ky la dieu dg nhan thay. Vi du nhu khd khan vg nhan dien benh cua con minh, trong viec tim ra each trg giup hieu qua cho
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eon. Vdi su phat trign va md rdng cua truyen thdng, internet, cha me cd digu kien tim higu dl dang han ve can benh nay nhung ngay ca khi dugc cung cap day du thdng tin vg benh tinh ciia con thi cha me cflng thieu nhirng ky nang can thiel de hd trg con minh.
Scheuermann va Webber [dan theo 7] cho rang, vdi hai dac diem ca ban ma tre tu ky hay bieu hien la su thai qua ve hanh vi va sir thieu hul vg hanh vi da day cha me den rat nhieu phien toai, su boi roi, xdu ho vd cd tire gidn, tiu thdn, hoang mang... Cha me thuc sir phai chap nhan mgt nhiem vu day gian nan trong ca mdt chang dudng dai de di ciing vdi con hg.
d Viet Nam, trinh dp nhan thirc chung vg chirng benh tu ky cdn ban che, nh^t la d cac vimg ndng thdn, da sd tre tu ky bi chain chdn doan khign cha me va gia dinh phai chiu nhieu thiet thdi. Gia dinh cd con tu ky thudng bi cho la khdng cd "phiic". Diva tre ra ddi la su trirng phat nhung cai khdng hay cua dng ba, bd me gay ra. Nhieu ngudi me cdn bi chdng va gia dinh chdng rudng bd vi sinh ra dua con khdng binh thudng. Them vao dd, nhfl-ng Idi di nghi, dam tieu, dinh kien cua xa hdi khat khe da day cha me cd con tu ky cam th4y tu ti, xa lanh mgi ngudi va hay tir chdi nhirng Idi mdi den nhitng noi ddng ngudi, tiai cdng cdng.
b. Khd khan ve mat tinh cam
Khi con chua dugc chan doan la bi tu ky, cam xue chung ciia cha me thudng la lung tung, hoang mang vd buon vi con minh khdng cd su phat trien binh thudng nhu nhirng dua Ire khae ciing tuoi. Mdt sd cam thay lo ldng, bdt an vd hoai nghi ve mdt dieu gi do "khdng binh thudng" d con minh nhung hg cung khdng biet chinh xac dd la gi.
Piimley, Bowen va Morgan [5] cho rang, cha me cd con tu ky thudng trai nghiem rat nhieu cam xiic khac nhau khi ho nhdn ducrc ket qud chdn dodn rang con hp cd khiem khuyet ve phat trien, nhat la khi khiem khuyet do bi an giau nhu chting tu ky. Phan irng cam xiic ciia cha me khi nhan dugc ket qua chan doan d mdi gia dinh la-rSt khac nhau. Cac nghien ciiu da chi ra sau md hinh phan ling cam xiic dien hinh ciia cha me trong thdi khac nhan dugc kgt qua chan doan xac nhan con bi tu ky nhu:
- Mdt sd cha me cam thay nhe nhdm bdi hp biet rang khdng phai hp la nguyen nhan gay ra benh cho eon; Ngugc lai, cd nhfl-ng eha me roi vao tinh trang hdn loan va khdng cd ldi thoat;
- Mdt sd khac khdng ddng y, nghi ngd vdi ket qua chan doan, cam thay lo lang ve phan iing ciia gia dinh va ban be khi biet con hp khdng binh thudng nhu bao dua tre khac;
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- Cd nhieu ngudi da cd nhirng tien doan trudc vg tinh trang cua con thi cam thay dg suy sup han; Cd nhirng cha me thiy dau ddn vi hg trai nghiem sir mat mat, cam giac bi tupt khdi tay mpt dua tre "khde manh";
- Ddi khi cd cha me thay doan kgt hon va ciing nhau chuin bi tam ly vugt qua nhung khd khan phia trudc.
c. Khd khan ve mat hanh vi irng xir
Can phai thay rang, trudc khi cha me trd thanh ehuyen gia trong ITnh vuc trg giilp tre tu ky, tieh cue lap ke hoaeh cho tuong lai ciia con thi hg da phai ngm trai nhigu cung bac cam xiic tieu cue nhu da phan tich d tren. Chinh cam xiic nay da anh hudng den hanh vi ciia cha me d cac mirc dp khac nhau.
Vi khdng bieu het tinh trang benh cua con nen cha me cd tam ly che giau tinh trang benh cua con, liing tiing khi con cd hanh vi khdng phii hgp noi ddng ngudi va tir chdi giao tiep, quan he xa hdi nhu di chai, du lich hay an udng, tide sinh nhat...
Chinh vi mac cam va stress keo dai dan dgn cha me thudng met mdi, khdng cd su tin tudng vao tuong lai. Dac biet, do thieu hieu biet va hd trg ciing nhu tre bi cham chan doan dan dgn cha me khdng biet each lap ke hoaeh va tim ra bien phap hd trg con phii hgp. Cd ddi khi cha me thoai thac cho nha trudng, td chirc xa hdi khi cam thay bat luc trudc tinh trang benh ciia con minh.
Khd khan ve tuang tac xa hgi: Wall Kate [9] cho rang, viec cd mgt diia con tir ky se anh hudng vd ciing ldn den cha me va gia dinh. Diia tre thudng dugc "gan mac" vdi nhfl-ng hanh vi khdng dugc chip nh^n, khdng binh thudng va ddi khi la nhtrng hanh vi ki di va chinh dieu nay la van de phien toai khi tre tham gia cac boat dgng ciing ca gia dinh ben ngoai xa hgi, noi cdng cdng. Cac nghien ciiu trong ITnh vuc nay cho biet, cha me thudng xuyen ndi rang, hp cam thay cang ngay cang bi cd lap va le loi trong cac bfl:a tiec sinh nhat, da ngoai vdi cac gia dinh khac, thdng thudng hp tir chdi cac ldi mdi gap gd de tranh con hg - dira tre tu ky - gay chuyen. Them vao dd, vi diia tre tu ky khdng bieu hien benh ra bgn ngoai nhieu nen phan iing cua cdng ddng xa hdi cd the se rat tieu cue va thieu thien chi. Nhin chung, mdi chuyen da ngoai tiep xiic vdi noi cdng cdng cua gia dinh la cue ki vat va va cang thang cho mpi ngudi trong gia dinh, nhat la cha me.
2.2. Cdc yeu to dnh hu&ng den khd khdn tdm ly 2 2]. Cdc yeu to chu quan
Niem tin: Cha me cd con bi tu ky thudng thieu niem tin hay bi quan va ed nhflng lam trang tieu cue trong cupe sdng. Khi nhin thay con minh bi thut
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liii so voi cac ban, khong co su phat trien binh thucmg nen cha me cam thiy don dpc va hoang mang, kh6ng biet do dau, lam gi va lam nhu thi nao dA giup con CO dugc cupc s6ng binh thuong.
Y chi: Thong thuong, khi frai qua mpt chu6i nhtrng cam xiic tieu cue khi biet con minh mac chirng tu ky, cha me se din chap nhan thuc ti va quyit tam hon trong cupc chiin cam go va lau dai di giiip con minh. Niu dugc hS trg diy dii ve thong tin, kien thirc, ky nang giup con cpng vol su tiin bp ciia con va su thong cam, chia se cua ca gia dinh, xa hpi se la dpng luc quan trpng di cha me xac dinh tu tuong va ke hoaeh tuong lai de quyet tam thuc hien.
Kien thuc vd cdc ky ndng chdm soc. gido due tre tie ky; Nhirng can chuyen cam dpng ve sir chain soc giup con tien bp va chien thang ty ky ngay cang xuit hien nhieu tren cac phuang tien truyen thong gan day, nhat la bao mang, cang cho thay tinh yeu thuang con se la dpng lire to ldn de cha me trd thanh nhirng chuyen gia trong linh vyc tri lieu. Khi cha me co day du hanh trang kiin thirc va ky nang, hp se manh me va ty tin hon rat nhieu va day chinh la su dam bao chac chan nhat cho sy tien bp va thanh cong ciia tre ty ky.
2.2.2. Cdc yeu to khdch quan
Hogt dpng truyen thdng dai chung; Neu tu ky va cac chirng benh lien quan den ty ky khong dugc tuyen truyen day du va lien tuc se dan den su thieu hieu biet ciia xa hpi ve tinh frang benh. Dieu nay khien cho cha me lung tiing va hoang mang. Hem nira, tir ky la tinh trang hiem gap nen hg cam thay minh dudng nhu bi don vao chan tudng, vao ngo cut vi xung quanh khong cd dira tre nao nhu con minh. Neu nhu hp cp du thong tin va biet rang cd nhieu trucmg hgp tre ty ky van cd the song va hda nhap tdt vdi cdng ddng thi hg se cam thay yen tam, cp niem tin hon va tiep them dpng luc chp hg trong chang dudng dai trg giup con minh.
Dinh kiin vd thdi dp cua cpng dong; Chinh vi khdng hieu biet ve benh nen dam ddng de cd sy chi trich, thiiu thien chi, xa lanh tham chi la de biu cha me cd cpn ty ky. Vi khdng dugc cam thdng va chia se ciia cdng ddng nen cha me thucmg cam thiy ty ti, mac cam va tii than. Nhu da phan tich d tren, rieng d Viet Nam, vdi van hda dac thii, nhit la d cac vimg ndng thdn, tu ky cdn dugc gan vdi sy hien hinh cua ma quy va hien than cua nhilng gi khdng tdt do cha me gay ra, do vay cha me phai ddi mat vdi su de biu, xa lanh cua mpi ngudi nang ne hon.
Mice dp (phd benh) hpi chirng tif ky cila con. Tiiy thudc vao tinh trang nang hay nhe ciia chung ty ky do fre mic phai ma anh hudng khac nhau den tam ly ciia cha me va din tdi khd khan khac nhau.
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Hieu qua tri lieu vd gido due doi v&i ire tu ky: Ngu trong qua trinh dugc can thiep va trg giiip dira tre cd nhfl-ng tign bg nhit dinh sg nhu mdt "ligu thudc tinh than" giiip cho cha me cd tam ly thoai mai va dg stress ban. Hg se cd niem tin vao sir thay ddi ciia con trong tuong lai. Ngugc lai, ndu diia tre khdng hgp tac va khdng the hien su tien bd trong hanh vi va cam xiic se cang lam tang sir cang thang va khd khan tam ly nang ne han.
Su giiip da vd ho tra cua cdc luc luang khde trong xd hpi nhu: benh vien, CO quan. dia phuang, trudng hpc va cac td chiic giao due chuyen biet...
Dac biet, su hd trg ciia cac dich vu tam ly va ehe dp uu dai, phiic lgi xa hdi phu hgp rieng vdi tre va gia dinh. d cac nudc phuang Tay (nhu d Anh), tre tu ky cung dugc coi nhu tre khuyet tat nen dugc hudng phiic lgi xa hdi cao nhu di benh vien khdng phai tra vien phi, dugc tham kham dinh ki nen cha me se dd phai lo lang vg kinh phi chi tra cho con va loan tam cham sdc con dugc tdt hgn.
Su thong cdm vd giup da cua gia dinh, bgn be vd ngir&i thdn: dieu nay se giiip cho eha me cam thay minh dugc thdng earn, se chia va giup do eiia nhigu ngudi do dd hp bdt mac cam, tu ti hon.
Bdu khong khi ldm ly chung cua gia dinh cung nhu moi quan he giua cdc thdnh vien, anh chi em cua tre tu ky: NhQ-ng khd khan cua gia dinh cd con tu ky la rd rang, sir phu thudc ciia tre vao eha me la mdt trong nhfl:ng nguyen nhan anh hudng dgn nhfl-ng boat ddng chung cua gia dinh va nhirng ngudi con khac. Do dd, ngu cac thanh vien trong gia dinh cimg chia se, thdng cam. yeu thuong lan nhau se giiip cho khd khan giam bdt. Ngugc Iai, neu ganh nang ddn Ign vai cha me trong khi cac thanh vien khac khdng the hien traeh nhiem, yeu Ihuong thi se khien cho bau khdng khi tam ly trong gia dinh vd ciing cang thang, ngdt ngat va cha me lai cang met mdi, stress hon.
Khd ndng tdi chinh cua gia dinh: Day eung la mgl nguyen nhan co ban anh hudng den tam ly ciia cha me, nhat la d nhirng nai tre tu ky chua cd dugc su hd trg va phiic lgi xa hgi can thiet. Ganh nang vfl-a phai eham sdc con mgi luc mpi nai, vira phai lo cho cac con khac, vira phai di lam dg lo tai chinh se day cha me dgn trang thai cang thang, dg cau gian va tre ciing de bi phat nhigu han. Su thieu thdn ve tai ehinh cung quygt dinh den viec tre cd duge hudng cac chuong trinh cham sdc, hd trg chuyen biet hay khdng vi chi phi tham gia cac chuang trinh nay kha dat dd.
3. Ket luan
Khd khan tam ly la mdt hien tugng tu nhien trong ddi sdng con ngudi.
Trong bat cir boat ddng nao, con ngudi cirng cd the gap phai cac khd khan tam ly can trd hoat ddng cua minh. Khi con ngudi thich irng dugc vdi boat ddng thi
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khd khan cd thg giam di. Nhung nhung bac cha me cd con tu ky, khd khan tam ly cua hg dai ding va rit khd mat di vi dira tre tu ky ludn hien hu-u trong cudc sdng ciia hg. Mdi giai doan trudng thanh ciia dira tre lai tac ddng vao cha,me d nhu-ng miic dp khac nhau. Dieu quan trpng la vien canh cua diia tre hau nhu khdng sang siia, dac biet la khi diia tre trudng thanh va ve gia. Vi the, can cd chuang trinh can thiep khdng phai chi cho dira tre ma cho chinh cha me ciia chiing, giiip cha me cd con lir ky giam bdi ap luc de nudi dudng va cham sdc dua tre tdt han.
Tai lieu tham khao
1. Attfield E. and Morgen H., Living with autistic Spectrum disorder, Sage/Pauld Chapman Pubhcalions. London, 2006.
2. Miles J.H„ Takahashi T.N., Bagby S., Sahota P.K.. Vaslow D F., Wang C H , Hillman R.E. & Famier J.E., Essential versus complex autism: Definition of fundamental prognostic subslyles, Americal Journal of Medical Genetics, 135, 171 - 180, 2005.
3. Phdn logi cdc chung benh quoc le, phien bdn 10 (ICD - 10, Td chirc Sii'c khoe thg gidi, 1993).
4. Piimley L. and Bowen M., Autistic Spectrum Disorders in the Secondary School, Paul Chapman Publishing, London, 2006,
5 Piimley L., Bowen M. and Morgan H., Autistic Spectrum Disorders in the early years, Paul Chapman Publishing, London, 2007.
6. Reber A.S. and Reber E., The Penguin Dictionary of Psychology (3ds), 2001.
7 Scheuermann B and Webber J., Autism - Teaching Does Make a Diffirence, Wadsworth Group, Canada, 2002
8. Tanoue Y., Oda S., Asano F. & Kawashima K., Epidemiology of infantile autism in southern Ibaraki. Japan- Differences in prevalence in birth cohorts, .Journal of Autism and Developmental Disorders, 18155 - 18166, 1988.
9. Wall K , Education and Care for Adolescents and Adults with Autism - A guide for professionals and carer. Sage Publication Ltd, 2007.
10. Sd lieu khao sat dg tai "Nghien cicu nhicng khd khdn Idm ly cua cha me co con bi tu ky" do TS Duong Hai Hung lam chii nhiem.
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