/ H U ^ 6 N G T I E P CAN VA CAC PHU^ONG PHAP ©lEU TRI, CAN THIEP
HOI CHlTNG TU^ KY 6 TRE EM: TRU^CflVG HOfP NHOM LOfN TRONG
CAU LAC BO GIA DINH TRE TlT KY THANH PHO HA NOI
VO HAI VAN
Dat vin de
Tu ky (TK) Id mdt loai khuylt tdt phat triln', tdn tai suit ddi, ed tde ddng, dnh hudng to Idn den bdn than tre mie benh, gia dinh, edng ddng vd xd hdi. TK da va dang la mdt vin dl "ndng" tr6n thi gidi. Vdi sir gia tdng nhanh ehdng trong nhung nam gin ddy, TK cdn dugc ggi Id "benh djch"
(Anonymous, 2004, tr. 15). Do su phirc tap cua benh nay, nhiing bien phap diau trj, can thiep cung rit phiic tap, keo dai va tdn kem vl tai chinh. Ddng thdi, do chua ro nguy6n nhan gdy benh nan din nay vdn ehua ed phuong phap ndo cd thi ehu'a khdi TK, chii ylu chi Id gidi quylt nhirng trieu ehiing ciia benh; do vay, tdc ddng Idn din tdm ly, ganh ndng keo dai ddi vdi gia dinh tre vd xa hdi.
Hien nay, chua co nghian ciiu ddnh gia ve ganh ndng kinh t l eiia TK tran todn cau, song d My vd Anh, chi phi xa hdi hang ndm cho riang vdn dl nay dd vugt qua vdi ty USD
(Buescher va cdng sir, 2014). Lian Hi6p Qude eung da ehi ra mot trong nhung thach thirc eiia TK la: gay ra nhu'ng khd khdn kinh ta nghiam trgng eho ede gia dinh, dde biet d ede nude dang phdt triln do thilu ngudn lire chdm sdc y ta fhttp://www.vietnamplus.vn/Home/LHO-
keu-goi-ehung-tay-giup-do-eac-benh-nhan- tu-kv/20134/190873 .vnplus).
Trude su phdt triln phiic tap vd nhihig tde ddng nghi6m trgng cua hdi ehung TK, tran thi gidi cd nhilu nghien ciiu ve van da nay da duge edng bd, dac biet la d cdc nude phdt triln nhu Anh, My^... Hudng nghien ciiu ehii ylu hien nay la lam ro nguyan nhdn gdy benh vd cae phuang phap dieu trj, can thiep cho tre mac hdi chiing TK (tir day ggi tat Id TTK). Nhilu phuong phdp dilu trj, can thiep dudi gdc dd tdm ly, y hge... da ra ddi vd thue hanh mang lai kdt qua tieh euc (Seida va cdng sir, 2009, tr. 95-104). Trong khi dd, d Viet Nam, ITnh vue nghien ciru nay ' Theo CDC (Center for Disease Control and
Prevention - Trung lam Kiem sodt va Phong ngira djch b?nh thuoe Bp Y te va Dich vu Nhan sinh Hoa Ky), khuylt tat phat trien la mot nhom da benh man tinh nghiem trong do suy yeu tinh than va/hoac the chat. Khuyet tat phat trien gay ra nhieu kho khan trong mot so ITnh virc ciia cuoc song, dac biet la trong
"ngon ngO. van dong. hoc tap. tu lire va song mot minh". doi vol nhirng nguoi dang phai song ehung
vcri chiing (htlp://vi.wikipedia.org/wiki/Khuv%El%BA%BFt l
%EI%BA%ADt ph%C3%AU tri%EI%BB%83n (Truy cap ngay 10/11/2014)].
^ Ngay 30/9/2009, T6ng thong My Barack Obama da chinh thijc cong nhan TK. la 1 trong 3 van de y te noi com ciia quoc gia nay (ben canh benh tim va ung thu) va quy6t dinh dau lir mpt khoan kinh phi lai 5 ty USD cho nhiing van de nay, trong do nhan manh vao yeu ciii tim ra nguyen nhan, phucmg phap dilu tri va can
thiep cho TTK rhttp://wvAv.whitchouse.gov/the press office/Remarks
-by-the-President-on-the-American-Recoverv-and- Reinvestment-Act-at-the-National-lnstitutes-of-Health (Truy cap ngay 13/11/2014)].
Tap chi Pan igc hoc sdS - 2014
mdi dugc quan tam trong vdi ndm gdn ddy.
Trong gido trinh chinh thdng cua ngdnh y, vdn da nay duge d6 cap het sire khiam tdn.
Trudng Dai hge Y Ha Ndi eung mdi dira benh TK vao chuang trinh dao tao Nhi khoa tir nam 2004 (Nguyln Thj Phuang Mai, 2005, tr. 8). Dudi gdc do Nhan hgc, dde biet Id Nhan hge y te, vdn da nay van chua dugc quan tam.
Bai viat nay gidi thieu cac phuong phap dilu trj, can thiep hdi chiing TK d tre em (nghi6n cii'u trudng hgp Nhdm Ldn^ trong Cdu lae bd gia dinh tre tu ky thdnh phd Ha NOi) dudi gdc do Nhan hgc y te. Bdi viat nhdm tra Idi hai cau hdi sau: (1) eac ylu td van hda dd cd dnh hudng nhu th6 nao din viae lira chgn eac phuang phdp dieu tri, can thiep cho TTK vd (2) eac phuong phap hien dai cd ngudn gdc tir cde nude tian tian nhu Anh, My, Uc... dd duge van dung nhu th6 ndo trong bdi canh van hda, kinh ta, xa hdi cua Viet Nam.
1. Khai quat v l cac phirong phap dieu tri, can thiep hoi chtrng ty ky tren the gidi va Viat Nam
1.1. Theo thdng ka ehua day du ciia ehung tdi, hien cd hang tram phuong phap can thiep va dilu trj TK dugc gidi thieu d cae nude ti6n tian tran tha gidi nhu My, Uc, Anh, Phdp... Tuy nhi6n, cae nghian eii'u tdng
^ Nhom Lcrn trong CLB gia dinh TTK thanh pho Ha Ngi dirge thanh lap vao nam 2005, bao gom gom gia dinh cac chau tir 5 tuoi tra len va cac chau dang chuin bj hoac dang hoc tieu hoc. So lieu cua Ban dieu h^nh CLB cho biet, hien nay danh sach Nhom Lan gom 143 gia dinh tren tong so khoang 400 gia dinh trong toan CLB; luy nhien, chi co 62 gia dinh dong hgi phi, trong do co 48 gia dinh co con trong dp tuoi tre em theo khai niem trong Luat Bao ve. cham soc va giao dye tre em cua Viet Nam. Do vay, trong nghien ciru nay, chiing toi lira chon 48 gia dinh trong Nhom L6n dl dilu tra bang hoi va phong van sau.
quan ve dilu tri lam sdng ddi vdi TTK eho thdy, khdng cd mdt phuang phdp eu thi ndo cd the edi thien tdt cd cdc trieu chimg TK hay cd hieu qud dieu tri ddi vdi tdt cd cdc TTK (Stahmera vd Cunninghamb, 2011, tr. 229-239). Tran thue te. ehi cd nhimg phuang phdp dd duge thue ehiing \e hieu qud can thiep vd diau tri mdt sd trieu chiing TK can ban (Myers vd edng sir, 2007, tr. 1162-1182).
Dudi day Id mdt sd khuynh hudng phd bien tran the gidi hien nay:
- Khuynh hudng xem TK Id mdt dang khd khdn vi the chdt: Mdt sd phuang phap can thiep cho TTK bit dau tir quan dilm cho rdng TK Id mdt dang khd khdn vi thi chdt, dugc xem xet dudi eac gdc do nhung tdn thuang cua nao bd, ddng kinh, khd khdn \e nghe vd nhin, suy giam he miln djch, ti6u hda... Theo dd, cde ehuong trinh tri lieu tap trung vao thude, gidi dde he thdng, vat ly tri lieu, bam huyet, phdn hdi than kinh, d-xy cao dp, trj lieu ta bao gdc va eha do dn kiang...;
trong dd, phd bien nhdt Id diing thude.
- Khuynh hudng xem TK la mdt dgng khuyet Idt phdt trien: Ddy la mdt khuynh hirdng khd phd bi6n, xem xet TK dudi gde do la mdt dang khuyat tat phdt trien ldm dnh hudng din nhilu mat phdt triln ciia TTK.
Tran eo sd tiing mat phdt triln bj khilm khuylt, xudt hien nhiJng khuynh hudng trj lieu tap trung vao timg mat khi6m khuylt do nhu hanh vi, giao tiep, quan he xa hoi... Cac phuong phap trj lieu, gido due eung ra ddi tren ea sd eac each tilp can nay. Cae phuang phdp tri lieu, gido due cung ra ddi tran ea sd ede each tiap can nay: ABA (Phdn ti'eh hanh vi ling dung), TEACCH (dugc sii dung de trj lieu vd giao due cho TTK vd tre cd khd khan vl giao tiap), DIR (Dua tr6n sir khdc biet ve
va Hdi Van
phdt trian va ca nhdn, va cac mdi quan he), trj lieu phan tdm, phuong phdp tam van ddng, phuang phap chinh dm vd trj lieu ngdn ngiJ, trd ehoi ddng vai, trj lieu thdng qua cac mdn nghe thuat (am nhac trj lieu, ve va nan, tha vd ddng dao), phuang phap nhdm, phuang phap lao ddng trj lieu, thiiy trj lieu, trj liau edm gide, ddng vat trj lieu, trd ehoi trj lieu, mdy tinh, phuong phdp PECS (He thdng giao ti6p trao ddi hinh anh)...
Nhung phuang phdp tr6n thudng dugc tien hdnh tdng hgp trong diau trj, can thiep cho TTK bdi moi phuang phdp, xet v6 mdt phucmg dien ndo dd, dau ed hieu irng ri6ng.
Tuy nhien, viec dp dung ede phuong phap nay trong di6u tri, can thiep TTK d moi qude gia, mdi nhdm cdng ddng lai chju dnh hudng ciia nhiau ylu td nhu kinh t6, vdn hda. chinh sdeh xd hdi...
i.2. O Viet Nam hien nay, cdc phuong phap trj lieu eho TTK theo quan dilm hien dai, vl mat ly thuyat, dau da duge cap nhdt.
Tuy nhian, tran thue ta, dl dp dung ede phuang phdp nay, ddi hdi phdi cd nhung dilu kien di kem nhu kinh tl, moi trudng, thiat bj... nan cd nhiJng phuang phdp duge sir dung phd biln nhu diing thude, vat ly trj lieu, ABA, TEACCH..., song ed nhiJng phuang phap rdt it d\xgc sii dung nhu gidi dde he thdng, d-xy cao dp, tl bao gdc...
Ngodi ra, viee lira chgn phuang phap dilu trj edn phu thugc vdo nhdn thiic, dilu kian eua eac ea sd diau tri, ciia mdi gia dinh TTK.
Dae biet, d Viet Nam, nhilu phuong phap trj lieu hien dai duge "'Viet hda" vd dp dung nhung theo cdch thirc riang dh phii hgp vdi TTK d Viet Nam.
Ben eanh dd, cung nhu cdc quic gia d ehdu A khdc nhu Trung Qude, Nhat Ban..., d Viet Nam edn ed su tham gia ciia y hgc cd
truyin trong tri lieu TTK. Tu ngan ndm xua, hdi ehiing TK dugc xip vdo ehiing Nuy (Nuy chimg, Na hoan, Phong na) dl nghian ciru diau trj bdng Ddng y, bao gdm ca diing thude vd cham ciiu. Ngoai ra, edn nhilu phuang phdp ehiJa b6nh tdm linh xuit phat til' quan niem dan gian. Nhiing ngudi theo quan di6m nay cho ring: benh TK gom. 2 phan: phdn thue (benh vl luc phu ngii tang, edn ea, than kinh...) va phan md (benh thugc va tha via, thudng Id benh vong nhap vd b6nh vong theo, cung cd khi la lac vong...). Vi vay, cdn phdi thue hien eac nghi 16 tam linh.
Nhu vay, d day cd sir tdn tai song song nhieu nan y hgc khdc nhau md trong Nhdn hgc thuat ngu de chi vdn d6 ndy Id da nguyen y hgc (medical pluralism) (Foster, 1976, trich trong: Trdn Hdng Hanh, 2005, tr. 22-23). Do vay, khi mot dira tre duge xac djnh la mie chirng TK thi trong quan niem dan gian, nd lai duge eoi Id su tra gia, vong nhap hay ehuyan kilp... n6n da tdn tai ca nhiing phuang phdp hien dai, truyin thing, dde biet Id tdm linh trong dilu trj, can thiep cho TTK. Vai trd eiia ylu td tdm linh trong dilu tri, can thiep TTK dd dugc ghi nhdn a nhilu qude gia khae, khdng ri6ng d Viet Nam (Xem tham: Collins, 2003; Shaked vd Bilu, 2006, tr. 1-27; EKAS vd cdng sir, 2009, tr. 706-719).
2. Thirc trang dilu tri, can thifp cho tre ta ky d Nhdm Ldn
Gia dinh, true tilp la cha me, ed vai trd vd ciing to Ion trong ehdm sdc, nudi dudng vd dde biet Id dilu trj, can thiep eho TTK.
Tham ehi, trong bdi canh Viet Nam hien nay, "viec chong chgi vdi cdn benh tu k^ ciia gia dinh va ngudi tu ky d Viet Nam vSn d tran mdt ehiln tuyln hit sire don dde. Chu
Tap chi Ddn loc hoc sd5 - 2014 53 yau gia dinh phai dua vdo sue lue vd khd
ndng eiia minh" (Nguyln Thj Hodng Vln, 2013, tr. 155). Sau khi dugc phat hien va xac djnh benh, eha me Id ngudi chii ddng trong tim ki6m phuang phdp, ea sd dilu trj, can thiep cho eon.
2.1. Quan niem, nhdn thuc ciia cha me vi ehung benh tu ky vd phuang phdp tri lieu hoi ehung tu ky & tri em
Lien quan din nhdn thirc cua eha me vi hdi chimg TK, nghian ciru cho thdy, da sd (95,83% ngudi duge hdi) diu nhdn thiic dung day la mot rdi loan; ban canh do, do nhiing trieu chiing ciia TK nen nhiau eha me (89,58%) cho ring nd ddng thdi eung Id benh thuc the; mdt sd khac (43,75%) eho ring dd la benh tdm ly; rat it ngudi (4,16%) coi dd Id benh tdm thdn bdi hg thdy eon eua hg cung cd mdt sd ddu hieu nhu ddng kinh.
Ly gidi vl nguy6n nhdn eua hdi chirng TK, kat qud nghian ciiu cho thiy, tdn thuong nao duge cho Id nguyen nhan Idn nhdt (43,75%), rdi dan mdi trudng dgc hai (41,66%). Hi6n tai, day eung ehinh la nhiing nhdn dinh ciia hau het cde nha khoa hge. Ban canh dd, edn ed nguyan nhan we tdm linh (nghiep, qua bdo, sd phdn...) (14,58%). Di6u ddng ndi la khdng cd ai eho ring TK Id do di truyin hodc thi6u sir cham sdc eiia cha me.
Ve ddu hiiu nhdn biet tre mac hdi chimg TK, phat hien sdm nhiing dau hieu hodc trieu ehiing TK d tre nhd ddng mdt vai trd quan trgng, quyet dinh su thdnh edng trong can thiep, diau trj TTK. Nhan biat sdm nhiJng ddu hieu ndy edn giiip gia dinh tre ed djnh hudng va ca hdi tdt nhdt trong viec lira chgn cac djch vu tri lieu, can thiep sdn cd tai nai cu trii phii hgp vdi hoan canh kinh ta, dja 1^... Kit qua dilu tra bdng bang hdi 48 cha me TTK v l ddu hieu bit thudng ddu tian ciia
eon khi6n hg lo Idng eho.thiy: cham ndi la bieu hi6n ro net nhit (47,91%), rdi din hanh vi dac biet (35,41%), eudi cimg la hd hiing vdi ngudi than vd khdng quay diu lai khi dugc ggi tan (dau ehiam 6,25%). Kat qua nay, dde biet la dau hieu chdm ndi, phii hgp vdi eanh bdo eua ede nha ehuyan mdn ve rdi loan TK d tre em (Filipek va edng sir, 2000;
Nguyln Thj Mai Lan, 2013, tr. 256). Tuy nhi6n, trude bleu hien cham ndi, mdt sd eha me lai giai thich theo quan diam cua dan gian nhu "nhanh di thi cham ndi" nan dd eiing bdi, ki6ng ky...; hg chi dua con den benh vien kham khi thiy con khdng ed tiln trien tdt - thudng da d vdo giai doan mudn (sau 36 thang diu ddi) cua can thiep sdm, do do, dd dnh hudng den su tian bd eiia tre.
Cling vdi chdm ndi, mdt sd tre cd hanh vi dde biet nhu la het bdt thudng, tu ddnh minh hay danh ngudi khac vd cd, phat am nhirng tir linh tinh khdng ed nghTa, khdng kiem sodt dugc hanh vi, qudy khdc khdng rd nguy6n nhan rat khd dd... Mdt sd eha me da dua eon di kham va ti'eh cue can thiep, trj lieu eho tre khi biet tra mac benh TK.
2.2. Lua chgn cdc md hinh diiu tri, can thiep
Nghian eiiu ciia chiing tdi eho thdy, hien nay trong diau trj, can thiep hdi chiing TK d tre em cd su tham gia eiia ea ba khu vuc: khu vuc ehuy6n mdn (professional sector), khu vuc truyin thdng dan gian (folk sector) vd khu vuc phd thdng dai ehiing (popular sector) (Xemth6m: Kleinman, 1980).
Khu vuc chuyen mdn bao gdm cac chuy6n gia y hgc, tdm ly, giao due dac biet.
Khu vue nay dugc td chire mot each ehinh thong va dugc phap luat edng nhan. CJ Viet Nam, khu vue chuyen mdn bao gdm nhirng ngudi hdnh nghi Tdy y va Ddng y. Theo do.
VG Hdi Vdn
khu vuc nay gdm cac nhdm sau: I) Cac benh vien ehuyan vl Nhi khoa hay da khoa tai ede thdnh phd Idn nhu: Benh vien Nhi Trung uang d Ha Ndi, Benh vien Nhi ddng d Thdnh phd Hd Chi Minh, Benh vien Trung uang Hul, Vien Cham ciiu Trung uang... vd hien nay benh vien da khoa d mdt sd tinh, thdnh pho ciing bit ddu nhdn kham va dilu trj hdi chirng TK d tre. 2) Cdc phdng kham tu nhan do cdc bdc sT tai cde eo sd y t l tran hoac da nghi huu phu trach. 3) Cdc trung tdm tu vin, can thiep, chdm soe TTK; eac trudng mdm non dde biet ciia ca nhdn hay ede td chiic phi chinh phii. 4) Ban eanh dd, mot sd it TTK, ehii ylu d cac thdnh phd Idn, gia dinh ed dilu kien kinh tl, eha me ed trinh do hge vin cao, edn dugc dieu trj, can thiap tai ede ca sd y tl d nude ngodi nhu Trung Qude, Singapore, Hdng Kong...
Trong ede khu vuc ehi'nh thing vd dugc thira nhan vl mdt ehuyan mdn vii'a nau tran, Benh vien Nhi Trung uang vd Benh vien Nhi ddng Thanh phd Hd Chi Minh la hai ea sd Idn vd cd uy tin nhat. Kat qud nghien ciru cho thiy, ed 79,16% cha me da dua con din Benh vien Nhi Trung uong dl khdm, ehan doan va diau trj. Trong mdt nghian ciru mdi ddy eung cho thay, 100%
TTK dang diau tri d Benh vien da khoa Thai Nguyan da tirng di6u trj tai Benh vien Nhi Trung uong (Pham Trung Kian, 2013, tr. 22).
Tuy nhian, do tinh trang qud tdi, eo sd vat chat cdn thiau, thdi gian khdng phii hgp va khoang cdch dja ly nan nhiau gia dinh sau do da ehuyan sang cde trung tam, trudng mam non dac biet Mdt sd gia dlnh cd dilu kien da dua eon ra nude ngoai diau trj, can thiep va tham chi la djnh cu.
Khu vire truyen thdng ddn gian bao gdm ede thdy lang, thay eiing, phdp su, nhd
n^oai cdm... Nhdm ndy khdng thugc ha thdng y t l chinh thdng. Cdc each ehiJa banh cua hg cd thi Id mang tinh chit thdn bi hodc ddn da, hodc ed hai. Ddi khi hg ciing sii dung mdt sd bdi thude ddn gian kit hgp vdi thue hdnh nghi le. Kit qud dilu tra cua chiing tdi cho thiy, cd 87,5%. TTK da dugc "ehiJa benh" bdng cung 16, 22,91% tre da duge
"truyin nang lugng" va 14,58% tre dd thuc hdnh cac nghi le ki6ng khem khac nhu ddi tan, cho lam eon nudi...
Khu vire phd thdng dgi chimg la khu vue CLia ngudi dan, nhirng ngudi khdng co ehuy6n mdn, Trong bdi eanh dieu tri, can thiep TTK d Viet Nam, nhtTng boat dgng trong khu vuc ndy bao gdm: sir dung thude dugc mua tii' nhung ngudi ban thude da dieu tri nhung trieu chiing thdng thudng ciia TTK (cac vin dl vl dn, ngii, ti6u hda...), ehia se vl thude vd cdc phuong phap khdc giu'a cac eha me TTK, mot sd eha me da tu dgc tai lieu nude ngodi d6 dp dung dieu trj, can thiep cho con minh va dac biet la hinh thdnh cac nhdm khdm do cha me da xudt bae sT tii nude ngoai din Viet Nam"^. Khde vdi eac loai benh tdt thdng thudng, do ti'nh chat phiic tap eua TK vd nhu'ng han chi til' khu vuc ehuyan mdn nen nhirng hoat ddng ndy lai diln ra phd bi6n hon, dac biet Id d cdc thanh phd Idn, trong eac gia dinh md eha me cd trinh dd hgc van cao.
Nhu vay, mdi khu vuc deu cd vai trd quan trgng trong diau trj, can thiep TTK, tuy nhi6n vai trd dd dugc the hien d moi giai doan phat triln eiia tre, d mdi gia dinh khdc nhau. Thue t l trong dilu tri va can thiep Mo hinh nay xuat hien a Ha Noi tii nam 2008, do mot s6 gia dinh TTK 6 Ha Noi khoi xuong. Din nay, no van tiep tuc duac duy tri va co sir tham gia cua mot so it_ cac gia dinh 6 cac tinh thanh khac nhu Thanh phi Ho Chi Minh, Nghe An...
Tap chi Ddn tgc hgc sd 5 - 2014
TTK, cd sir ehdng cheo va bd sung eho nhau giira cdc khu vuc iy. Ddy la dieu dl hilu bdi trong bdi cdnh vdn hda ciia Viet Nam, nd phd bi6n trong diau trj nhi6u loai benh, dac biet la nhiJng benh nan y.
2.3. Thuc hdnh cdc phuang phdp dieu tri, can thiep cho tre tu ky
Dudi ddy Id nhtJng phuang phdp tri lieu da duge ap dung va/hode hieu qua ddi vdi TTK vd nhiing khd khdn eiia gia dinh, cha me TTK trong qua trinh thue hien.
2.3.1. Cdc phirongphdp y sinh hgc Trong thuc hdnh cde phuang phdp y sinh hge ddi vdi TTK, cd dilu tri bang thude, gdm hai loai: thude Tay y va Ddng y.
V l thude Tay, do da sd eac gia dlnh da dua eon d6n khdm, dieu tri tai Benh vi6n Nhi Trung uong, nan dau dugc chi dinh diing mdt sd loai thude nhu Clonidin, Risperdal (lam giam tang ddng), Haloperidol (lam gidm hung tinh), Tegretol (dieu ehinh cam xiic), Citicolin, Fluoxetine, DMAE H3, DHA (tdng dd tap trung), Zoloft (dilu chinh dgng tac lap lai djnh hinh), Cebrolysin, Nootropin, Lucidrin (tdng tuan hoan nao) (Nguyln Huong Giang, Nhp.or.vn)...
Mot sd eha me sau dd da tim den bae sT nude ngodi. Ket qua khdo sat cho thdy 35,4% eha me dd eho eon kham va udng thude theo don ciia hai bae sT theo phuang phdp BIO (trj lieu y sinh). Theo do, TTK sau khdm, xet nghiem sS duge tu vin, ka don.
Theo BIO, tre se dugc thue hdnh tuan tutheo eae budc nhu tren. Tuy nhi6n, thue ta khi tim hilu ve quy trinh thuc t l dp dung cho cde tr6 trong Nhdm Ldn khdng hodn todn
nhu vay. Mot la, mdt sd gia dinh theo BIO bai ban, diing quy trinh, tire Id phdi ed bdc sT khdm, tu vdn; bd me TTK cung phdi rat am hieu ve BIO, cd dii thdi gian va tian bae.
Ddnh gid va kit qud eiia viee dp dung BIO mdt each bdi ban ddi vdi eon minh, ede gia dinh diu khdng djnh eon tien bd nhiau. Hai Id, dp dung BIO "nua miia". Mdt sd gia dinh vdn eho tre kham bdc sT nhung khdng tudn thii diing quy trinh vd nguyen tde duge yeu eau, dac biet la viee thuc hien nghiem tuc ehi do dn kieng, thai doe, d-xy cao dp. Tham ehi, hg edn ap dung ed nhirng bien phdp tam linh da loai trir dde td trong ngudi tre, truyan nang lugng...
B6n canh viee khdm, diau tri theo Tdy y, do sir phii'c tap ciia ehiing benh TK, cha me edn lua chgn khde ma theo hg la "an toan hon", dd id Ddng y. Ddng y eho rang eo eha phdt sinh hdi ehiing TK Id do nguyan duong khdng khde, khi huylt diu suy lam cho su sinh trudng va phat due bj trd ngai. Do vdy, phdi bd ich ngu tang, bd dudng khi huy6t, khai khiau tinh than, thdng kinh hoat lac.
Cling vdi viee udng thude, trong dieu tri Ddng y, TTK cdn dugc chi dinh chdm cii'u, bam huyet - phuong phdp dugc dp dung nhilu cho TTK tai Nhat Bdn, Trung Qude, Han Quoc, Dai Loan, Hdng Kong va Viet Nam. Cd phu huynh cho ring, khi TTK dugc kit hgp nhiau phuang phdp, trong do ed phuong phdp cham ciru, bam huyet thi sire khde eiia tre se tien bg ro rang, tre cd tha ndi duge mdt sd ttr vd hgp tae hon vdi ngudi ldn, ehju chai vdi tre em khdc hon. Tuy nhian, phuang phdp nay cung chua dugc kilm ehiing thuyet phuc ve mat khoa hgc.
Hien nay, mot sd gia dinh edn cho con "edy
56 ^ _ ^ ehi"^. v l thdi gian va quy trinh, "cay chi"
dan gidn hem cham eiiu truyan thdng, chi 3 tuin ldm 1 ldn trong thdi gian dilu trj vd sau dd giam ddn 4 - 5 tuin/ldn, chi phi cung it hon. Tuy nhian, cho dii phucmg phdp ndy da dugc thira nhdn la cd hieu qua ddi vdi mdt sd banh, nhung chua ed nghian eiitu nao chi ra hieu qua vdi TTK. Nhu vay, trong dilu trj y sinh, ban eanh Tay y vd ede can thiap y ta khac, nhiau gia dinh edn eho eon diing thude Ddng y, chdm ciru, "eiy chi". Xudt phdt tir quan niem eoi TK Id mdt "benh", diau trj y sinh vdn dugc quan tdm dang ka. Phan Idn ede gia dinh da dp dung nhirng phuong phdp nay eho biet tre cd bian ehuyan han ve thi chdt, edi thien mot sd chirc nang, tao tian dl cho viee dp dung eae phuong phdp can thiep tam ly, giao due. Va mat khoa hge, hi6u qua eiia nhiing phuang phap ndy chua dugc chu'ng minh ro rdng, tham chi tr6n thuc te, mdt sd phuong phdp dp dung ddi vdi mot sd tre edn gdy tdc hai nhung do su phiic tap eiia chimg benh TK, do tdm ly "cd benh thi vai tii phuang" nan nhiau cha me van sii dung cho con.
2.3.2. Can thiep, tri lieu gido due, ldm ly Do TK Id mdt dang rdi loan phat triln lan tda, id benh khdng khu trii vao mot ITnh vuc cu th6 ndo, tha hien sir rdi loan toan dien cac mat trong ddi sdng tdm ly con ngudi nan khi cde bdc sy tam thdn van chua tim ra phuang thude trj lieu hiru hieu, eac nha tam
Cay chi (catgut embedding therapy), moi trong nhiJng hinh thijc tac dpng vao huyet dao nhtr thuy cham, tCr cham, laser cham... bang each chon vui catgut (mpl loai chi diing trong phlu thuat, co kha nang tu tieu sau mot thoi gian nhit djnh) vao huyet dao nao do nham kich thich huyet dao, tao can bing am dirang, dilu chinh chiic nang tang phu...; qua do, tao tac dung dieu trj nhu cham ciiu.
ly, nha gido due hgc, vat ly tri lieu, chinh am, tam vdn dgng... tham gia trj lieu da dem lai nhilu kit qua ddng khich 16.
Thuc t l qua trinh can thiep, tri lieu eiia cac TTK trong Nhdm Ldn eho thiy, ABA, TEACCH vd PECS Id nhung phuong phap duge uu tian thuc hien diu tian, kat hgp vdi dd la tam van ddng. Nhiing phuang phdp nay thudng duge thue hien bdi cde ehuyan gia, giao vian ehuyan biet vd dp dung cho TTK dudi 6 tudi. Trong giai doan ddu khi mdi phat hien benh ciia con, cac gia dinh ehii yau giao phd viee can thiep, trj lieu cho ede CO sd y ta, trung tam, dac biet Id d thdi dilm each day tran 10 ndm, khi thdng tin v6 TK, phuong phap can thiep, trj lieu TTK con ban cha; din nay, mot sd cha me da tu tlm cdeh nghien ciiu, hgc hdi nhidu phuang phap khae nhau da trj lieu cho eon.
Ndm 2008, mdt sd cha me trong Nhdm Ldn da tham gia lap hgc ciia chi Phuong Nga**. Khda hgc de eap tdi hai phuang phdp:
van ddng va hgc dge, sd theo phuong phap cua Glenn Doman vd ABA/VB. Mae dii con nhi6u tranh cai vl chuydn mdn, nhung phuong phdp nay da duge ij'ng dung va dugc ehia se bdi nhirng phu huynh da theo hgc nan khd nhiau gia dinh thirc hanh cho con.
Nhi6u TTK da cd tiln bd.
Tuy nhi6n, do TK rit phiic tap vd tre can nhiau phuang phap khde nhau dl ed thi tien bg tran nhilu ITnh vuc nan nhiau eha me da tim hieu va thuc hanh nhilu phuang phap khde cho eon. Mdt sd cha me da tim hilu vl Chi Phuong Nga co con trai mie hoi chiing TK nang. da sang My hoc v l phucmg phap can thiep cho TTK. Sau do, chj da to chirc nhieu lop chuyen giao cong nghe. Tuy nhien, phircmg phap ma chj Phuang Nga ap dung cung nhu cac lap chuyin giao cong nghe CO nhieu y kiSn trai chilu.
Tap chi Ddn tgc hgc sd5 - 2014 57 phuang phap RDI vd mdi ehuyan gia sang
Viet Nam tu vdn. Chit lugng, hieu qud khi thue hien RDI cd tu vin bai bdn rit tdt nhung ehi phi khd ddt vd cha me phdi h6t siic cd ging, eon hgp tde tdt mdi cd th6 thuc hien ddy dii eac yau edu eiia ehuy6n gia.
Nhieu phuang phap khde eung da dugc cdc phu huynh chii ddng hge hdi, ap dung eho con trong khi cde co sd y tl, gido due d Viet Nam cdn ehua thue hien nhu Massage, dilu hda edm gide, Floortime, thiiy tri Ii6u, dm nhae trj lieu...
Nghi6n cii'u thuc t l cart' thiap, trj lieu cho TTK bang nhii'ng phuang phdp vdn cd ngudn gde tir Anh, MJ..., cac cha me dd biat edeh dp dung cho phii hgp vdi vdn hda, con ngudi vd dilu kien d Viet Nam. Tuy nhian, nhtJng thuc hdnh nay khdng ed su gidm sdt, kiam djnh, thue hien ciia cde ea quan cd ehuyan mdn va eac chuy6n gia.
Nhu vay, viec thuc hdnh can thiep, trj lieu tam ly, gido dye cho TTK d Nhdm Ldn cho thay, ban canh viec can thiep trj lieu eho eac trung tdm trudng hgc va giao vian, cha me dd cd su phdi hgp, chii ddng rit Idn. Vai trd chii ylu trong thue hanh eac phuong phdp can thiep, trj lieu Id cha me; trong dd, ngudi me cd vj tri quan trgng han cd bdi d Viet Nam, viee chdm sdc, day dd eon cai dugc mae djnh Id trdeh nhiem eiia ngudi vg, do vdy, me ludn gan gui con, hiau con nhdt.
Tuy nhian, sir chia se, cam thdng giiJa hai vg chong cung la ydu td quan trgng tao su thuan lgi trong ean thiep trj lieu eho eon.
2.3.3. Thue hdnh cdc nghi li ciing bdi.
kieng khem
Ciing vdi viae ti'eh cue ean thiep eho con, vdi quan niem "co benh thi vai tii phuang", nhiau gia dlnh da thuc hien cdc
nghi le, ki6ng khem nhu ehuyan nghiep, trir ta ma, ddi tan, ban khoan hay tham chi cho con di lam eon nudi... Trong ddn gian, cd mdt meo ehiia cham ndi d tre, dd Id di eudp dd an d chg. TTK thudng di kem chdm ngdn ngir nan nhiau gia dinh da thuc hien meo ndy cung vdi viec kham chiJa, tri lieu theo khoa hgc. Mdt sd gia dinh do tin rdng con minh bj
"vong nhap", bj gdnh ng tir kiap trude ciia cha me... nan da nhd d6n sir giiip dd ciia cdc nha ngoai edm, eac thay cung, phdp su... d6
"dudi vong" hay "tra nghiep". Cdc budi 16 phdn Idn dugc thuc hien tai mdt ngdi chiia hay ngdi den md theo ngudi lam 16 cho Id linh thieng, ed dii siie manh de giiip tre, cung ed khi duge thuc hien ngay ehinh nha/noi thd ciia thdy ciing hay tai chinh gia dlnh ciia tre. Ngoai ra, trong ddn gian tdn tai quan niem, mot diia tre sinh ra gap phdi gid xdu, hay quay khdc, dm dau thi phai dem "ban khoan" vao dan hay ehiia d6 Phat, Thanh ehe chd, bao hd. Hoac eung ed the eho ldm con nudi mdt gia dinh khac hay ldm le ddi t6n, chuyin nghiep... Nghian ciiu cho thay, nhiau gia dinh da thuc hien nghi le bdn khodn eho con.
Ket luan
Do sir phiic tap ciia ehiing benh nay, nhiJng bien phdp diau trj, ean thiep cho TTK rit phirc tap, keo dai vd tdn kem v6 tai chinh.
Dong thdi, do chua rd nguy6n nhan gay benh nen cho din nay ehua ed mdt phuang phap nao cd the chiia khdi TK ma ehu yau giai quylt nhirng trieu chiing ciia TK. Hien nay cd nhieu quan di6m khde nhau vl nguyan nhdn gay nen chiing TK d tre; vi thd, cung cd nhilu phucmg phdp di6u trj, ean thiep. (} Viet Nam ndi ehung, Hd Ndi ndi ri6ng, qua nghian ciiu thuc trang qua trinh dilu trj cho TTK d Nhdm Ldn cho thay, hau
h6t eac phuong phap ttr cac nude tian ti6n tren tha gidi da dugc dp dung. Tuy nhien, cd su khac nhau gitJa ede co sd y tl, gido due vdi gia dinh eiia TTK. Neu nhu trong cde co sd y tl, dien hinh la Benh vien Nhi Trung uang, phuong phdp diau trj, can thiep cho tra rdt don dieu, ngheo nan trong khi yeu cau dat ra trong dilu trj, ean thiep TTK la phai phdi hgp nhi6u phuang phdp khae nhau.
Trong cac gia dlnh eua TTK, viee ap dung phuong phdp da dang, phong phii vd cap nhdt hon. Tuy nhian, do khdng cd ehuyan mdn va tam ly sdt rudt ehu'a chay eiia eha me nen nhiau phuong phdp chua duge thim djnh chic ehan, chua cd bdng chiing khoa hgc van dugc cha me dp dung. Ban canh do, do sir phii'c tap eiia benh, do khoa hgc chua tim ra phuong phdp ehira khdi chirng TK d tre nan nhilu gia dinh da tim din cde phuong phdp tam linh, kiang khem theo ddn gian. Thue t6 nay ddi hdi phai cd su kilm sodt eiia cac eo quan ehuy6n mdn ciing nhu hirdng ddn cha me dk tranh nhu'ng tinh hudng ddng tile ed th6 xdy ra.
Nghian cii'u cung eho thiy, eha me cd vai trd rdt quan trgng trong qua trinh dilu trj, ean thiep eho TTK. Chinh cha me la ngudi quylt djnh lira ehgn ea sd dilu trj, ean thiep cho con, tham ehi la ngudi quylt djnh viec sii dung thude, can ddi lilu lugng, lan kl hoach can thiep cho con hay tham chi la ngudi true tilp can thiep... Dae biet, eha me cdn Id ngirdi tim kilm phuang phap mdi, dua vl Viet Nam vd thuc hdnh eho con.
Thuc tl dd khdng djnh, eha me la ngirdi hilu eon nhit, d b6n con nhilu nhdt; do dd, hg se la ngudi can thiep hieu qud nhat eho eon.
Han thi niJa, TTK cin dirge can thiep, trj lieu trong mot thdi gian dai, qua nhilu ndm;
do vay, su hiau biit, quan tam ciia cha me Id
ylu td quan trgng hdng dau giiip tre tian bd.
Tuy nhien, cha me vd gia dinh cung chju tde ddng anh hudng rdt nhiau khi cd con mdc hdi chirng TK. Dd Id nhiJng tde ddng ddi vdi CO hdi viee ldm, ngh6 nghiep eiia eha me, tac dgng din cac mdi quan he trong gia dinh vd gia dinh vdi cdng ddng, xa hdi. Dac biet, do TK la mdt ehung benh phiie tap, cin dilu tri, ean thiap trong thdi gian ddi, bdng nhilu phuang phap, tdn kem tian cua, cdng sire nan gay ra su cang thing trong gia dinh ciia tra. Tir nhirng tac ddng do dat ra van dd cdn cd sir hd trg, ehia se tir cdng ddng, xa hoi ddi vdi TTK va gia dlnh cua tra.
Nhu vdy, hien nay, vin da dilu trj, can thiap cho TTK d Viet Nam, mdt mat, dd ed nhimg budc phat triln dang kl, cap nhdt duge nhiau phuang phap mdi, ti6n tiln tran tha gidi. Mat khac, thuc t l eung ddi hdi phdi cd sir quan ly', kiam djnh cua cac eo quan ehuyan mdn vd su trg giiip ciia cdng ddng, xa hdi dl TTK cd thi tiln bd, ldn lan trd thanh nhu'ng ngudi sdng dgc lap, gidm bdt ganh nang eho gia dinh, cdng ddng va xd hdi.
Tai lieu tham khao
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