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THL/C TRANG KHO KHAN T A M LY CUA CHA ME CO CON TU KY TAI CAN THO
Nghien ciru nay dtrgc tai trg bcri Quy Phat trien Khoa hgc va Cong nghe Quoc gia (NAFOSTED) trong de tai: Nghien di'u nhifng kho khan tam ly cua cha me cd con bi tir kf, Ma so VII 6-2013.21; TS. Duong Hal Hung lam chii nhiem.
TS Dirong Hai Hi/ng
Trudng Dai hoc Su phgm Hd Npi.
TOM TAT
Bdi bdo trinh bdy kel qud khdo sdt kho khdn tdm ly cua cha me cd con tu ky d ihdnh phd C 'dn Tha Kel qua khao sdt cho Ihdy. khd khdn cua cha me cd con lu ky the hien qua- Nhdn thdc, xiic cdm vd hdnh vi ung xir. Kho khdn vi hdnh vi icng xu vdi con vd nhicng ngu&i xung quanh ldn han kho khdn nhdn thuc vi benh tu ky vd khd khdn ve khde phue nhiing xue cdm cua bdn thdn Tuy vdy. tdt cd cdc kho khdn ndy deu d mirc trung binh.
Tix khoa: Khd khan ldm ly cua cha me; Cha me co con lu ky.
Ngdy nhgn bdi- 16/11/2015; Ngdy duyet ddng bdi: 25/11/2015.
1. Dat v a n de
Cha me cua nhirng d u a tre t u ky gap rat nhieu kho khan. Nhirng kho khan ma hg gap phai do la: Kho khan ve mat nhan thuc nhirng dac diem ctia tre tu ky, nguyen nhan dan toi tu ky 6 tre, each eham soc va giao due tre tu ky.
Cha me co con bj tu ky ciing gap nhieu kho khan trong doi song tinh cam ciia ehinh minh, ngay ca viec giai quyet cae moi quan he gia dinh: Quan he giira hp va cac thanh vien trong gia dinh, quan he vg chong cua chinh hp. Ho cung gap nhieu kho khan trong giao tiep vai cgng dong. T h u c trang nhirng kho khan nay cua cha me co con tir ky a Viet Nam nhu the nao, bieu hien va mirc dp ra sao chua dugc nghien ciru mgt each he thong. Trong khi chua xac djnh ro dupc nguyen nhan ciia tre tir ky, viec nghien cim de xac dinh thuc trang nhirng kho khan tam ly ciia cha me co con bi tu ky, chi ra cac m u c dp kho khan va cac yeu to tao nen cac kho khan tam ly do eua cha me co eon bi tu ky o nuoc ta hien nay van la cau hoi can co loi giai dap thoa dang. Vi vay, viec nghien ciru thue trang cac bieu hien kho khan tam ly eua cha me co eon bi t u ky de co bien phap
78 ( TAP CHI TAM l y HOC, S6' 12(201), 12-2015
fro giup ho khac phue va giam thiSu nhihig kho khan tam ly dl cham soc va giao due tre tir ky t6t hon la tk ein thiSt.
2. Khach the va phirong phap nghien cuu 2.1. Khdch the nghien ctru
Nghien cilu khao sat 200 cha me eo con ttr ky tai thanh ph6 Ckn Tho.
Sau khi lam saeh philu, s6 philu eo the sir dung la 171 philu. Do dilu kien tilp xiie han chl nen ehiing toi chi khao sat m6i gia dinh co con tu ky 2 philu hoi (mpt philu khao sat djnh lugng, mot philu phong vln sau). Noi dung eae philu hoi xoay quanh eac bieu hien kho khan tam ly eua cha me eo con tu ky vl nhan thile, xilc cam va hanh vi trong eac moi quan he voi con, vcii nhilng nguoi xung quanh va voi ehinh minh.
2.2. Phuang phdp nghien ciru
Phuong phap chu yeu duge sir dung la phuong phap dilu tra bing bang hoi, phong van sau, quan sat cha me co eon ty ky. Cae s6 lieu thu dugc dugc xu ly bang phan mim thing ke toan Vige SPSS 16.0. Cach tinh dilm nhu sau:
Kho khan: 3 diem, it kho khan: 2 dilm, khong kho khan: 1 dilm. Dilm ttung binh (DTB) la trung binh egng eiia tat ca eae y kien tra loi. S6 lieu duoi day duge xii ly tren 171 y kien tra loi.
3. Ket qua nghien ciiu thuc tien cac kho khan tam Iy cua cha me co con tuky
3.1. Kho khdn ve nhan thuc
a Kho khdn cua cha me trong viec tim kiem thdng tin de hieu ve Ire lir ky Ket qua khao sat ve kho khan nay the hien qua so lieu d bang 1.
Bdng 1: Mirc do kho khdn cua cha me trong tim kiem cdc thong tin ve benh lu ky
TT 1 2 3 4 5 6
Kho khan
Tim duac nguoi cung co con tu ky de trao doi Trao doi vai cac bac sT
Trao doi vai cac chuyen gia tam ly Tim kiem cac tai lieu viet ve Ire tu ky Cac thong tin ve tre tu ky tren mang xa hgi Trao doi vol nhung nsucri xung quanh
Tong diem 330 381 371 262 304 262
DTB 1,93 2,23 2,17 1,53 1,78 1,53
Thu- bac 8 1 3 12 10 12
TAP CHI TAM Vf HOC, SS 12 (201), 12 - 2015 79
7 8 9 10 11 12 13 14 15 16
Trao doi vol thay, co giao day tre Muon tim hieu ve nguyen nhan tre tu ky Tim noi hoc v l each cham soc tre tu ky Hoc each cham soc Ire tu ky Tim duac nai minh tin tuong de gui eon Biet ho doi xil vol con minh the nao Khong ro lieu con co bot benh khong Hieu ve each cac trung tam se chira tri cho con minh
Ket hop vol giao vien trung tam de cham soc tre Cach pho bien kien thiic cua phuong tien thong tin dai chiing
Chung (trung binh cong cua 16 ti^u chi)
337 342 354 342 376 325 359 325 274 342
1,97 2,00 2,07 2,00 2,20 1,90 2,10 1,90 1,60 2,00 1,80
7 6 5 6 2 9 4 9 11 6
Khi CO con tu ky, nhieu bac cha me kho chap nhan su that va rat kho khan de hieu diing ban chat van de, kho khan trong viec doi mat vai su that la con minh bi khuyet tat va can cham soc eon nhu the nao. Do do, de hieu dugc kho khan tam ly eua cha me co con tu ky, truoc het can tim hieu nhiJng kho khan trong viec tim kiem thong tin ve benh tu ky de hieu diing ban chat benh tat cua con minh, tir do biet each cham soc eon va img xu vai nhirng moi quan he xung quanh.
Ket qua khao sat cho thay, diem trung binh ve kho khan ciia toan thang do la 1,80 cho thay mirc dp kho khan eiia cha me 6 mirc trung binh. Tuy vay.
hau het cha me dugfc khao sat deu gap kho khan. Muc do kho khan cua cac gia dinh khac biet nhau khong dang ke. Trong so 16 kho khan neu ra, c6 4 kho khan dat mii'c diem tren 2,0. Do la cac kho khan: khi trao doi voi bac sT ve benh tinh cua con; sau do la cac kho khan trong viec tim nai tin tuong de giri gam con, kho khan trong viec trao doi vai cac chuyen gia tam ly va kho khan do khong biet con minh co bot benh khong. Nhu vay, cac kho khan 1cm nhat eua cha me CO con tu ky la kho chap nhan sir that eon bi benh va lo ngai ve tuang lai cua eon Ban diu, nhigu nguai xau h6 khi phai trao d6i vg benh ciia con vai nguai khac vi hg khong biet ve tu ky. Nhieu ba me cam thay minh co loi khi sinh ra con va con mac benh. Ba Nguyen Thi E., quan Ninh Kieu, thanh pho Can Tha noi: "Mdc ca muon chet khi phdi noi chuyen ve benh cua con v&l ngu&i ta. Con ngu&i ta khoe mgnh. chai dua vui ve, con minh cic ngoi ly mpt cho. Vira thuang con vira gidn minh vd vira tid thdn". Dieu nay da ly giai tai sao nhieu cha me
80 TAP CHI'TAM L? HOC, So' 12 (201), 12 - 2015
CO con tu ky rat kho khan khi chap nhan su that, dac biet sir that vl tuong lai diia tre va ngin ngai khi noi ve con minh.
b. Kho khdn ciia cha me trong viec hiiu tre tu ky vd cham soc con Khi da hilu mgt phan ve tre tit ky, cha me co con tir ky vSn co thi gap cac kho khan vl viec eham soc tre tu ky va kho khan trong ilng xil vdi nhCtng nguoi than trong gia dinh. Hg c6 thi cho ring, nhung nguoi than khong thong cam va khong giilp do. Dl hilu vl vin dl nay, co thi xem xet cac s6 lieu thu dugc o bang 2.
Bang 2; Kho khdn ciia cha me trong chdm soc con vd hiiu vi thdi dp cua nhOng thdnh vien cita gia dinh vd nhirng nguoi xung quanh
TT 1 2 3 4 5 6 7 8 9 10 11
Kho khan
Thuong con nhung khong biet Iam the nao cham con Biet con muon gi de dap ilng
Biet con nghi gi de day no
Khong ai muon giiip minh vi ngai co the bi lay Khong dam dua con tham ong ba npi/ngoai vi sg ong ba khong vui
Khong dam dua con ve tham gia dinh cha me de vi so cha me khong vui
Khong dam noi v l con m6i khi gap ban be, nguoi than
Cac CO so cham soc tre tu ky khong pho bien kien thilc cham soc sa mat khach
Khong bilt each nhung khong dam hoi ai Gia dinh khong thong cam nhung khong bilt each giai thich
Vg chSng khdng thing nhlt trong viec dua con den trung tam cham soc tre
Chung (trung binh cong ciia 11 tieu chi)
Tong diem 376 342 433 239 217 188 210 303 251 217 227
DTB 2,20 2,00 2,53 1,40 1,27 1,10 1,23 1,77 1,47 1,27 1,33 1,59
Thii- bac 2 3 1 6 8 11 10 4 5 9 7
Dilm trung binh cua toan thang do vl kho khan nay o cha me la 1,59.
Nhu vay, kho khan nay eiia cha me cr mile trung binh. So vol kho khan vl tim
TAP CHiTAM LY HOC, So 12 (201), 12 - 2015
kiem thong tin thi kho khan nay a muc thap ban (1,59 so vai 1,80). Kho khan lan nh§t ma cha me gap phai la khong biet con nghT gi de day no. Sau do la cac kho khan: Thuang con nhung khong biet lam the nao cham con, kho khan trong viec biet con muon gi de dap ung. Nhu vay, cac cha me co con tu ky gap kho khan r^t lan khi tiep xue voi con, hieu con de cham soc va day con. Ngoai ra, hg con co thg gap kho khan trong viec tim kiem cac kien thirc ve cham soc tre tuky.
Tuy nhien, trong viec tim hieu ve thai do cua nhirng nguai xung quanh, trong do CO nguoi than trong gia dinh thi cha me c6 con tu ky khong gap nhieu kho khan. Co le, mgt phan hg da co thong bao va nhan dugc sir thong cam cua nguoi than nen hg khong qua kho khan trong viec hieu thai do eua nhijng nguoi xung quanh doi vai minh nen hg tu tin han trong moi quan he voi nguai than.
3.2. Khd khdn ve khde phue nhirng xdc cdm tieu circ cua bdn than Khao sat ve van de nay dugc phan anh qua bang so lieu sau:
Bdng 3: Kho khdn cua cha me co con tu ky trong viec khac phue cdc xdc cdm tieu cue cua bdn thdn
TT 1 2 3 4 5 6 7 8 9 10 11 12
Cac trang thai xiic cam Lo lang cho tuong lai ciia con
Hoang mang vi khong ro tuong lai gia dinh the nao Ban khoan khong biet con co khoi dugc khong Mac cam vol moi nguai xung quanh Cam giac co loi vi sinh ra con bi tu ky Mac cam vai gia dinh va nguoi than Co quen hoan canh ciia minh Chap nhan vi do la so phan Buong xuoi den dau Ihi den
Buon phien, chan nan khong thiet tha gi niia Ngai khong muon chap nhan con minh tu ky vi cho rang do la su trimg phat
Cho rang minh co loi trong viec con tu ky nen khong muon cho nguai khac biet
Tong diem 484 439 457 296 286 251 268 330 217 217 222 205
DTB 2,83 2,57 2,67 1,73 1,67 1,47 1,57 1,93 1,27 1,27 1,30 1,20
Thii bac 1 3 2 6 7 9 8 5 13 13 12 15'
82 TAP CHiTAM L? HOC, Stf 12 (201), 12 - 2015
13 14 15 16 17 18 19 20
Ngai cho nguai khac biet, sg bi che cuoi do khong biet cham con nen de con bi tu ky
Sg hi cha me chong cho riing, minh co loi ttong viec con tu ky
Sg ho hang cho rang, minh co loi trong viec con tu ky Sg ban be che cuai vi co con tu ky
Sg hang xom xa lanh vi co con tu ky Khong dam sinh tiep vi sg con lai bi benh Muon giu kin chuyen con minh bi tu ky Tin rang con minh se tro lai binh thudng
Chung (trung binh cong ciia 20 tieu chi)
217 217 210 227 222 245 217 428
1,27 1,27 1,23 1,33 1,30 1,43 1,27 2,50 1,59
13 13 14 11 12 10 13 4
Khi biet con bj tu ky, cac cha me rat lo lang va nhieu ngudi nay sinh nhirng xue cam tieu eirc. Ban than xiic cam tieu cue da la mgt trd ngai ddi vdi hoat dgng cua cha me ed tre bi tii' ky. Ai cung biet can phai chap nhan va phai quen vdi sir that la con bi benh. Nhung hg khdng de vugt qua cae xiic cam nay.
Hieu ro nhu'ng khd khan cua cha me cd con tir ky trong viec khac phue nhiing xue cam tieu cue se cd bien phap giiip hg vugt qua.
Kit qua khao sat cho thay, diem trung binh chung ciia toan thang do la 1,59, tire la khd khan ve mat xiic cam ciia cha me d mirc trung binh, ngang bang khd khan vl cham sdc tre tu ky va thdp hon khd khan vl tim kiem thdng tin benh tu ky. Tuy vay, hiu hit cha me diu gap khd khan nay nhung da so cac khd khan chi d mdc thip va rit thip, ed khd khan hiu nhu khdng dang kl. Cd 4 khd khan ndi len rit ro va nhirng ngudi lam eha me eua tre tu ky rit khd vugt qua, dd la: Lo ling cho tuong lai cua con, ban khoan khdng bilt con cd khdi dugc khdng, hoang mang vi khdng ro tuong lai gia dinh thi nao va tin ring con minh se trd lai binh thudng. NghTa la, nhOng ngudi lam cha me khd khac phue trang thai lo iing, ban khoan, hoang mang eho tuong lai cua con. Hg mudn tin ring con minh se khdi benh nhung hg khdng that tin vao dieu dd. Day la mgt trang thai xiic cam gay khd khan cho viec cham sdc tte>va tham gia cac cong viec CO quan, gia dinh riit can dugc khac phue.
3.3. Khd khdn vi mat hdnh vi ung xii-
Kit qua nghien ciru vl khd khan nay bilu hien qua bang 4.
Dilm trung binh eiia loan thang do khd khan vl hanh vi irng xit ctia cha me la 1,80, tire la khd khan d mire trung binh. Mirc khd khan nay cao hon khd
TAP CHi TAM LtHOC, Sd 12 (201), 12-2015 83
khan vl nhan thiic va xiic cam cua cac cha me. Thuc te tim hieu cho thay, hau hit cac cha me cd con tu ky gap nhilu khd khan trong iing xir vdi con va nhirng ngudi xung quanh. Cac khd khan kha da dang va the hien d tat ca cac mdi quan he: Vdi eon, vdi vg hoac vdi chdng, vdi ngudi than trong gia dinh va cac thanh vien cua cdng ddng. Nhung da sd cac khd khan chi d mile trung binh. Chi cd cac khd khan trong irng xir vdi con la dat diem trung binh tir 2,0 trd len. Dd la eac khd khan trorig: Cd du thdi gian danh cho con, tim each hieu con dl bilt each cham sdc con, trao ddi dugc vdi con. Day la he qua tit yeu vi cha me ed eon tu ky eung khd khan nhat trong nhan thirc ve benh tu ky nen hg khdng hilu dugc con, lo lang cho eon, khdng biet each ndi chuyen va chain sdc eon. Neu giai tda dugc cac khd khUn ve nhan thire thi cae khd khan ve thai do va hanh vi se dugc giam bdt.
Bdng 4: Kho khdn cua chg me co con tu ky trong viec iing xu vol con vd nhitng nguai xung quanh
TT 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16
Cac kho khan
Tim each hieu con de biet each cham sdc con Co du thdi gian danh cho con
Trao doi duoc vdi con Dugc su ho trg tir gia dinh Chong hoac vg hd trg khi cham con Moi ngudi xung quanh thong cam Khach den nha biet con minh tu ky Dua con di choi ngoai dudng Dua con den tham ban be Dua con den tham ong ba ngi/ngoai Tim dugc ngudi thong cam de chia se Hieu biet ve cac hoi chimg tu ky d tre Co ngudi giai thich ro ve can nguyen va hau qua ciia benh tu ky
Mat nhieu thdi gian nen can kien nhan Cach nhan biet su tien bo cua con minh Cach tu tham kham budc dau cho con Chung (trung binh cgng ciia 16 tiSu chi)
Tong diem 371 376 359 296 279 313 279 342 245 325 286 257 325 303 251 371
S T B 2,17 2,20 2,10 1,73 1,63 1,83 1,63 2,00 1,43 1,90 1,67 1,50 1,90 1,77 1,47 1,87 1,80
Thil bac 2 1 3 9 11 7 11 4 14 5 10 12 5 8 13 6
84 TAP CHiTAM lyHOC, Sd 12 (201), 12 - 2015
3. Ket luan
Phan tich ket qua khao sat tren cho thay, tat ca cac cha me co con tu ky deu gap kho khan trong hieu biet va cham soc tre tu ky. Ngoai cac kho khan trong nhan thirc cac v4n de nay sinh khi co dua con bi tu ky thi kho khan lan nhat cua cha me co con tu ky xoay quanh chinh dira con cua hg. Cac kho khSn cua cha me co con tu ky th6 hien qua: Nhan thirc, xiic cam va hanh vi ung xir.
Kho khan ve hanh vi ung xir vai con va nhung nguai xung quanh Ion ban kho khan nhan thuc ve benh tu ky va kho khan ve khac phue nhiing xiic cam cua ban than. Tuy Vay, tat ca cac kho khan nay deu a mirc trung binh.
Tai lieu tham khao
1. Le Khanh, Tre lu ky - Nhicng ihien than bdi hgnh, NXB Phu nu, 2004.
2. Quach Thuy Minh, Hdi ddp vi binh tu ky, NXB Y hgc, 2009.
3 Attfield E. and Morgen H., Living with autistic Spectrum disorder, Sage/Pauld Chapman Publications, London, 2006.
4. Miles J.H., Takaliashi T.N., Bagby S., Sahota P K., Vaslow D.F., Wang C.H., Hillman R.E. & Farmer J.E., .Essential versus complex autism: /Definition of fundamental prognostic subslyles, Amencal Joumal of Medical Genetics, 135, 171 -
180,2005.
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. Scheuermann B. and Webber J., Autism - Teaching Does Make a Diffirence, Wadsworth Group, Canada, 2002.
7. Tanoue Y., Oda S., Asano F. & Kawashima K., Epidemiology of infantile autism in southern Ibaraki, Japan: Differences in prevalence in birlh cohorts, Joumal of Autism and Developmental Disorders, 18155 - 18166, 1988.
8. Wall K., Education and Care for Adolescents and Adults with Autism - a guide for professionals and carer. Sage Publication Ltd, 2007.
9. 36 lieu khao sat de tai "Nghien cicu nhitng kho khdn ldm ly cua cha me co con bi tu ky" do TS. Duong Hai Himg lam chu nhiem.
TAP CHfTAM l y HOC. S6' 12 (201), 12 - 2015 85
