Journal of Exceptional People
2014 – Volume 1; Number 4
Institute of Special Education Studies
Faculty of Education – Palacký University Olomouc
Journal of Exceptional PeopleVolume 1, Number 4, 2014, published in May 1, 2014
Scientifics Board• ZsoltCséfalvay,UniverzitaKomenského,Bratislava,Slovakia• DariuszDziuba,UniwersytetŚlasky,Katowice,Poland• AntonioMiňanEspigares,FacultaddeCienciasdelaEducatión,Granada,Spain• SharonRaver–Lampman,OldDominionUniversity,Norfolk,USA• ValériaKerekes,ÁltalánosGyógypedagógiaiTanszék,Budapest,Hungary• KatarínaMajzlanová,UniverzitaKomenského,Bratislava,Slovakia• KarelPančocha,Masarykovauniverzita,Brno,CzechRepublic• EndreSzkárosi,EötvösLorándTudományosEgyetem,Budapest,Hungary• LaimaToméniené,ŠiauliaiUniversity,Lithuania• PavelVacek,UniverzitaHradecKrálové,CzechRepublic• IgorViktorovičVachkov,Moskovskijgorodskojpsichologo-pědagogičeskijunivěrsitět,Rassija• MilanValenta,UniverzitaPalackého,Olomouc,CzechRepublic• KateřinaVitásková,UniverzitaPalackého,Olomouc,CzechRepublic• PengYan,FacultyofEducation,SichuanNormalUniversity,China
EditorinChiefLibušeLudíkováExecutiveEditorsPavelSvoboda,JanChrastinaResponsibleEditorJanaKreiselová
EditorialBoardOldřichMüller,LuciaPastieriková,MartinDominikPolínek,PetraPotměšilová,MichalRůžička,VeronikaRůžičková,VojtechRegec,KateřinaStejskalová,JiříLanger,JiříKantor,ZdeňkaKozáková
LanguageEditorsJanaMagdoňová,EditaSatinská
CoverDesignJiříJurečkaTechnicEditorJitkaBednaříková
EditorialOfficePdFUP,Žižkovonáměstí5,Olomouc,770 00,CzechRepublic
PublisherPublishedandprintedbyPalackýUniversity,OlomoucKřížkovského8,771 47Olomouc
JournalWebsite:http://jep.upol.cz/
ISSN1805-4978(Print)ISSN1805-4986(Online)Reg.č.MKČRE20769
Journal of Exceptional PeopleAnInternationalJournalforEducationandSpecialStudies
EditorPavelSvobodaVolume 1Number 42014
JournalofExceptionalPeople,Volume1,Number4,2014 3
Content
Introduction......................................................................................................................................5
ARTICLES
Thecurrentissuesofaftercarein the Czech Republic.................................................................7MichalRůžička,MilušeHutyrová,JulieWittmannová
Researchonfamilyfactorsandsupportof childrenwithcerebralpalsy............................... 21JiaojiaoWu,ShenglinLiu
Communicationinstudentswithseverecerebralpalsy........................................................... 33JiříKantor,EvaUrbanovská
Basiccognitivestrategiesandthereadingprocessinpupilswithspecificlearningdisabilities....................................................................................................................................... 51MiroslavaBartoňová
Engagingstudentsinschoolleadership:Creativeapproachestoempowerment................. 65JonathanDamiani
Actionresearchinhome-basedearlyinterventionofdevelopmentaldisorder children.... 83XinruiLi
EEGBiofeedbackinindividualswithmultipledisabilityinSlovakia.................................... 91AlenaJancurová
BOOK REVIEWS
Qualityoflifeofanindividualwithsensoryimpairment:Modernwordorhotissue?..... 105ReviewedbyHanaMajerová
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 5
Introduction
Dearreaders,EditorialBoardoftheJournalofExceptionalPeoplemadeseveralchangesthatshouldmeettheexpectationsofourreadersandcontributors.Firstofallweinsertintothisissuea listofconditionstobefulfilledbyeachauthorinrelationtocompliancewithpublicationethics.Theeditorialstaffalsoacquaintsthereaderswiththeprocessofreviewproceduresthatareperformedforeachsentarticleandyoucanalsofindthecriteriabywhichweabideintheselectionofpublishedarticles.Currentlywearetryingtoinserteachtextintoa centralizedcommercialidentificationsystemDigitalObjectIdentifier(DOI),whichshouldincreasethechancesofvisibilityandgreatercitationofpublishedarticles.
Inthisissuewearepublishinga totalofsevenarticlesthatareresearchscientificpapersoroverviewessays.ThesearticlesdealwiththecurrentproblemsofaftercareintheCzechRepublic(ThecurrentissuesofAftercare)(Růžička,Hutyrová,Witt-mannová)andtheproblemsofpatientswithcerebralpalsyinChinaandtheCzechRepublic(JiaojiaoWu,ShenglinLiu,Kantor,Urbanovská).ThereisalsoanarticleoncognitivestrategiesrelatedtoreadinginchildrenwithSLD(SpecificLearningDisabilities)(Bartoňová)andthestudyfocusedonstudentinvolvementinschoolmanagementintheStateofNewYorkinthecontextofissuesrelatingtostudentswithspecialneeds(Damiani).Thelasttwopostsarefocusedontheareaofearlyinterventionofchildrenwith“developmentaldisorder”(XinruiLi)andtheuseofbio-feedbackinindividualswithmultipledisabilitiesintheSlovakRepublic(Jančurová).Themagazineisendedwithusualinterestingbookreviews(Majerová).
I hopethatbyreadingourmagazineJEPyougeta lotofnewandinterestinginformation.
PavelSvoboda
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 7
The current issues of aftercare in the Czech Republic
(scientific paper)
Michal Růžička, Miluše Hutyrová, Julie Wittmannová
Affiliation: Research on quality of life for individuals with special needs: SPP: 43413041/31. Institute of special education studies, Faculty of Education, Palacky University, Olo-mouc, Czech Republic.
Abstract: The following text aims to fulfil two purposes; the first purpose being to cre-ate a theoretical outline of aftercare. The second purpose comprises of presenting and comparing research regarding the explored subject. Most of the research presented in the paper was undertaken at the Institute of Special Education Studies at the Palacky University’s Faculty of Education. The results of three diploma theses supervised by the author of this text are also used.
Key words: Aftercare, substance dependence, research, drugs, alcohol
1 Introduction into the subject – a general outline of aftercare
1.1 A general outline of aftercare
Aftercareoraftercareprogrammesfollowafterthetreatmentofsubstancedepend-enceina psychiatrichospital,therapeuticcommunityorspecialiseddepartmentinprison.Clientsoftheseprogrammesareusuallypersonswithimpededpsychosocialdevelopment.Oftentheyaregraduatesofinstitutionaleducation,personswithcrimi-nalrecord,personswithaggressionproblemsorpersonswithpersonalitydisorderinwhomabstinencefromthehabit-formingdruguncoverstherapeuticpotentialandtheunderlyingcauseoftheinitiationofdependentbehaviour.
8 JournalofExceptionalPeople,Volume1,Number4,2014
Thepurposeofaftercareistoretainthechangesthatoccurredintheclientthroughoutthetreatmentor,alternatively,spontaneouslyorafterpreviousinter-ventions.
Inthelasttentofifteenyearsaftercareisthedomainofaftercarecentresthatoffera widerangeofservices.
AccordingtotheconceptionoftheMinistryofLabourandSocialAffairsaftercareisoneofthemostessentialfactorsfortheoverallefficacyoftheprocessoftreatingsubstancedependence.ThetransitionoftheclientfromtreatmenttoaftercareisinEuropeancountriesconsideredtobethemostimportantmomentinthetreatmentprocess.Thisexperienceisinlinewiththepracticalexperienceofnon-alcoholicdrugsserviceprovidersoperatingintheCzechRepublic.Therefore,ensuringad-equatecapacityintheaftercareprogrammesthatwouldbecommensuratetospecificneedsoftheclientsandlogicallycompletethechainofexistingservicesisabsolutelycrucial.
Duringthetransitionoftheclientstotheaftercareprogrammesthecontinuityofthetreatmentprocessshouldnotbeinterruptedthereforeitisdesirablethataftercarecentrescommunicatewellwiththeprogrammesfromwhichtheclientsareaccepted.Ideally,contactbetweentheclientandthechosenaftercareprogrammeshouldbearrangedbeforecompletingthebasictreatment.Theteamoftheaftercarefacilityshouldbeinformedofbasicprinciplesofthetreatmentprogrammethattheclienthasundertaken.Animportantelementinthewholetreatmentprocessisa subsidingintensityofthesupportgiventotheclientinaftercare.Theclientisgivenopportunitytotakea fullresponsibilityforhisorherlife.Inpracticetherespectivecommunitiesandpsychiatrichospitalsoftencollaboratelong-termwithaftercarecentresandtheyinformtheirclientsoftheaftercareprincipleswhiletheyarestillundertreatment.
Inaftercareprogrammesa multidisciplinaryteamisabsolutelyessential.Theteamoftheprogramshouldbeassembledbasedontheneedsoftheclients.Focusshouldbeonthemainpurposeofaftercarewhichistograduallydisassemblethebondsbetweentheclientandhisparticularprogram.Eachaftercareprogrammeshouldaimtocreatea goodqualitynetworkofspecialistsinresponsetotheproblematicareasofitsclients.
Thecoreteamoftheaftercareprogrammemustcompriseofa psychologist,a spe-cialpedagogueanda socialworker.Specialabilitiesincludegoodqualitytrainingincounsellingorpsychotherapyandmostimportantlyincluderelapseprevention.Thereisa vastfieldopenintheseprogramsforex-users.Thoseworkverywell,undersupervisionandafterhavingachievedspecialisededucation,inthefieldofsociotherapy.(KudainKalina,2003).
Whatalsoappearstobehelpfuliscontactbetweenthegivenaftercareprogrammeandexternalspecialistssuchasa regionalpublichealthauthority,dentists,generalpractitioners,freelegaladvisorsetc.
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 9
Mainelementsofaftercareare:• Psychotherapy–clientsinaftercareprogrammesmaymanifestvarioustraumatic
experiencesfromtheperiodofdrugusage,personalitydisordersfromtimebeforethedrugproblemaswellasotherproblemsconnectedtothedrugusage.There-foreitisessentialtocorrectlydiagnosewhatissuesoftheclientarepossibletodealwithinrealtime.Itisnotpossibletodealwithallproblemsthatariseduringtheperiodofaddiction;rather,theworkwithclientshouldfocusonstrengthen-ingabstinencefromtheprimarydrug.Forthisreasonsupportpsychotherapyfocusedonstabilisingclient’semotionalstateisused.Currentliteraturestatesthatcognitive-behaviouraltherapyisa coretherapeuticapproach.Accordingtotheresearchamongthestaffofaftercarecentresonlyfewareeducatedinthistherapeuticarea.Currently,psychodynamicSURtrainingisprevalent.
• Relapse prevention –fearoffailureisa basicmotivationalfactorforenteringanaftercareprogrammeinnewly-recoveringpeople.Forthemajorityofabstinentindividualsitisverydifficulttoresistcraving.Thegoalofrelapsepreventionistoequiptheclientwithskillsandknowledgeandthusstrengthenhisself-controlwhichlowerstheriskofa relapse.Relapsepreventionisthereforethethemeofa substantialnumberofgroupsessions.
• Social work –a widerangeofsocialandlegalproblemsmaybeobservedinclientsinaftercareprogrammes,problemssuchasdebtswiththeinsurancecompaniesandotherdebts,socialbenefits,prosecution,etc.Thehelpofferedbythesocialworkermustbepracticalsincemostclientsarenotabletosolvetheseproblemsontheirown.A goodsocialworkerisa corememberofanaftercareprogrammeteam.
• Work, sheltered employment and qualification – oneofthebasicelementsofintegrationintoa normallifeisacquiringa job.Thisisoneofthemaintasksofanex-userreleasedfromtreatment.However,theyoftenlackthenecessaryspecialisedqualificationorthecorrectworkmanners.Onepossibilityhowthesetroublesmaybeovercomeareshelteredworkshops.Thoseenabletheclienttoacquirebasicworkmannersortogeta qualification.Itisimportanttoassesscorrectlywhethertheclientreallyneedsshelteredemploymentorisabletogeta placementatthelabourmarket.Thereforegoodcooperationbetweenaftercareprogrammesandjobcentreoffices,localfirms,etc.ispartofthisarea.
• Health care –drug-abuseisdamagingtothehumanbody.Amongthemostfre-quentproblemsoftheclientsare:hepatitistypeBandC,gynaecologicanddentalproblems.Healthcareshouldnotbeforgotteninaftercare.Theclientsneedbothmentalandphysicalstabilisation.Cooperationwithdoctorsandhelpinensuringadequatehealthcareareelementsofaftercare.
• Offer of leisure activities –tolearnto“enjoy”withoutdrugsisanessentialgoalofthetreatmentandaftercare.Itisoftenobservedthatclients,infearofrelapse,
10 Articles JournalofExceptionalPeople,Volume1,Number4,2014
filltheirwholedailyprogrammewithtasks.Itisnotpossibletocontinuethiswayindefinitely;energyislostaftersometime.Whathadseemedprotectivebeforebecomesthecauseofstressleadingtorelapse.Anofferofvarioustypesofleisureactivitiesiswhatreallypreventsrelapse.
Duringthetransitionoftheclientstotheaftercareprogrammesthecontinuityofthetreatmentprocessshouldnotbeinterruptedthereforeitisdesirablethataftercarecentrescommunicatewellwiththeprogrammesfromwhichtheclientsareaccepted.Ideally,contactbetweentheclientandthechosenaftercareprogrammeshouldbearrangedbeforecompletingthebasictreatment.Theteamoftheaftercarefacilityshouldbeinformedofbasicprinciplesofthetreatmentprogrammethattheclienthasundertaken.Animportantelementinthewholetreatmentprocessisa subsidingintensityofthesupportgiventotheclientinaftercare.Theclientisgivenopportunitytotakea fullresponsibilityforhisorherlife.(KudainKalina,2003)
1.2 Structure of aftercare programmes
Ina narrowsenseaftercareconcernspost-treatmentabstinencesupportandmain-tenance.Ina broadersensetheaimofaftercareissocialintegrationoftheclientintonormallife.Amongtheinterventionsnecessaryforthetreatmentofsubstanceabusearerelapseprevention,supportgrouptherapy,individualtherapyandcounselling,leisureactivities,socialwork,workcounselling,shelteredhousing,shelteredem-ploymentandqualification,workwithfamilymembersandhealthcare.Intensiveaftercareprogrammeusuallylasts6–12months;itraisesthetreatmentefficacyratesandshortensthedurationofaftercare.(Kalina,2003)Itseemstobehelpfultoprovidetheclientswithcertainbenefitswhenattendingtheprogrammesuccessfully.Amongthesecanbeinternetuse,washingofclothes,morecounsellingetc.
AftercareprogrammesareundertheauspicesoftheGovernmentCouncilforDrugPolicyCoordination(GCDPC)andtheMinistryofLabourandSocialAffairs.Inordertoobtainfundingfromgovernmentsubsidies,theprogrammesmustfol-lowcertainrulesandcomplywiththeconditionssetbyGCDPC.Oneofthemostimportantconditionsforobtainingthesubsidyisobtaininga certificationoftheservices.CertificateofprofessionalcompetencyisissuedorwithdrawnbyGCDPC,basedona proposaloftheCommitteeforGrantingCertification,aftera certificationassessmentisrealizedbya CertificationAgencythatactsbasedona requestforsuchassessmentandattachingtherequireddocuments.
Thegrantingofcertificationmayberequestedbyanynaturalorlegalpersonpro-vidingservicestothetargetgroupofnarcoticdrugandpsychotropicsubstanceusers,thecontentandassessmentcriteriaofwhicharedefinedintheapprovedStandards
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 11
ofProfessionalCompetency,specificallyinthespecialsectionofthesestandards.(Kalina,2001)
Asa concreteexamplethestructureoftheservicesprovidedbyTheAftercareCentreinP-centreinOlomouccanbementioned.ThiscentrefulfilstheStandardsofProfessionalCompetency.Reasonsformentioningtheprogrammeofthiscentreareasfollows:1.Itistheworkplaceoftheauthor,2.thecentrewasoneoftheplaceswheretheresearchdescribedbelowwasundertaken,3.thefacilityisverysimilartootheraftercarecentres.
ThelengthoftheprogrammeinP-centreisusually6to8monthsdependingontheneedsoftheclient,theshortestbeing3months.Theclientmaydecidetousetheshelteredhousingthatusuallylasts4months.Theshelteredhousingisnotavailable,however,withoutattendingtheaftercareprogramme.
Intheearlydays,whenthecliententerstheprogramme,heisintroducedtotheoperationandstaffofthecentre,attendsthefirstmorningsessions,aswellasthefirstsessionwithhisadvisorandtogethertheydevelopa planforthefirstseveralweeksandwriteanagreementfortheprovisionofservices.Onthefollowingdaysheparticipatesatthematicgroupsandclubs,exploresthecityofOlomouc,isintroducedtootherclientsoftheprogramme,looksfora jobandstartsworkingwithhisadvisoronthetherapeuticcontract.
Theaftercareprogrammecomprisesofcompulsoryandoptionalactivities.At-tendanceatthecompulsoryactivitiesisoneoftheconditionsforacceptingtheclientintotheprogramme.Thecompulsoryactivitiesare:Individual therapy –individualconsultationisbetweentheadvisorandtheclient.Theclientusuallyattendsitoncea week;morefrequentlyatthebeginningoftheprogramme.Thelengthofonesessionisapproximately45–60minutes.Thedateofthesessionisagreedonbybothpartiesbeforehandanditistheirresponsibilitytoattendtheconsultationorexcuseone’sselfatleastonedaybefore.Attheindividualsessionstheclienthasanopportunitytotalkabouthisorherfeelings,moods,tastes,relationshipsand,mostimportantly,worksonthetasksinthecontract.Social work –a socialworkerassiststheclientinsolvingsocialmatters.Heorshesendsdocumentationtothejobcentreofficeandotherrelevantdepartmentsatthecitycouncilaboutparticipationintheaftercareprogramme,changesthecontactad-dresstobeinOlomouc,filesrequestsformonthlypaymentsincaseofdebts,contactstheprobationandmediationservicesforclientswithlegalpunishments,conditions,etc.Theworkeralsopassescontactinformationofgeneralpractitionersandotherspecialistsandassistsinfindinga job.Theworkerdoesnotsolveproblemsforthecli-ents,ratheraccompaniesthemsothattheylearntosolvetheseproblemsthemselves.Reflection groups–theseareheldevery14days.Theclient,othermembersofthegroupandthetherapistsreflectonthepasttwoweeks.Theyreflectonthetherapeuticcontracttogether,sealandintroducenewcontractsandcelebratesignificantevents
12 Articles JournalofExceptionalPeople,Volume1,Number4,2014
suchasgettinga joborhousing,finishingtheprogrammeandsimilar.Iftheclientisnotabletoattendthegroupforspecialreasonstheymustexcusethemselvestooneoftheteammembers.Dynamic group –isheldevery14daysonMondaysjustlikethereflectiongroupsbutthesedo nothavea settheme.Theclientisexpectedtobringupa topicandshareitwithothers,towillinglyacceptadvice,critique,opinionsandsuggestions,totrytoexpresshisorherfeelings,moodsandtoshowinterestinotherclients.Dynamicpsy-chotherapyandcognitive-behaviouralpsychotherapyisusedinthedynamicgroups.
Thegoalsofthegrouptherapyare:changingthenon-adaptivescheme,supportmaturationofpersonality,interpersonalcommunicationskills,etc.(Polínek,2013)
Thematic groups–areheldoncea week.Therespectivethemesconcerntypicalproblemsthattheclientsencounter.Programmeofthethematicgroupconsistsoftheoreticalintroductionintothetheme,discussionandenactingproblematicsitu-ationsandpossiblesolutionsofindividualproblemsonthegiventheme.Insomecasesthethemesarebroughtupbyclientsandinothersthetherapistspreparea seriesofthemes.Housing groups –areheldoncea week.Thegroupisattendedonlybyclientsusingtheshelteredhousingandthesocialworker.Atthesesessionstherunning,upkeep,divisionofdutiesincarefortheshelteredhousing,assessmentofthehousemanager’sworkandthemonthlyshiftingofthefunctiontoanotherclientareaddressed.Thehousinggroupischairedbymanagersofthetwoshelteredhousestogether.Morning groups –areheldeachworkingdayinthemorningandarecompulsoryfortheclientsintheshelteredhousingwhodo nothavea stablejoborareincapableofwork.Thisgroupismanagedbyclientsandthesocialworker.Duringthemeet-ingeverymembermakesanindividualplanfortheday,cleaningdutiesaresetandpracticaldailyproblemsaresolved.Clubs –areheldoncea weekunlessa differentscheduleisagreedon.Thepurposeistospendleisuretimeactivelyandtorelax.Theclientsandthesocialworker,andsometimesselectedexternalworkerstaketurnsinitspreparation.
These are among the optional activities:Family and relationship therapy –participationofclient’srelativesatthetherapyisveryimportant.TheparentsarerecommendedtoatleastvisittheP-centretobeintroducedtothetherapeuticprogramme,theteamandthewholecentre.Ifthecli-entisnothappywiththefamilyrelationshipsandwouldliketoimprovethemheisoffereda regulartherapy.ClientsmayalsobeofferedfamilyorrelationshiptherapywithspecialistsoutsidetheP-centre.
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 13
Qualification –theclientsreceivehelpwithchoosinganaccreditedretrainingcourseordistancestudyprogramme.Theclientsareprovidedwithmaximumsupportdur-ingthecourse.Sofarallclientshavefinishedtheirqualificationcourses.Computers and internet –altogetherthreecomputerswithinternetaccessarepro-videdfortheuseoftheclients.Thecomputersshouldbeusedtoacquireatleastbasiccomputerandinternetskills.Theclientsshouldbecarefulnottobecomeinternetaddicted.Sports equipment rental –sportsequipmentisavailableforrent:mountainbikes,balls,squashrackets,raftsPalavafortwowithaccessories,backpacks,tentsandsoforth.Thesearealsoavailableattheweekendswhentheclientsorganisetheiractivi-tiesalone.Theserviceisfreeofcharge.Clientswhoarenotaccommodatedattheshelteredhousearerequiredtopayanadequatedeposit.Gallery U Mloka–thegalleryisopenforpublicandvarioustypesofeventsareheldheresuchasexhibitions,film-screening,drumming,poetry-reading,photographiccourseetc.Thegalleryalsoservesasa teahouseopenforpublicwherevolunteerstu-dentshelpout.Clientsmayinvitetheirguestshereorborrowbooksfromthegallerylibrary.Talentforartsisnotrareinex-users.Worksofartcreatedbytheclientsoftheaftercareprogrammearedisplayedinthegallery.
1.3 Description of the sheltered housing
Theclientswhoareaccommodatedinshelteredapartmentshavecertainresponsi-bilitiesandrulesconnectedwiththisservice.Thosearepayingtherent,lockingthemaindoor,rulesconcerningacceptingguests,washing,theinternet,curfew,cleaning,phone-calling,correspondence,appointinga housemanageretc.ThesearedescribedindetailintheAftercareCentre’sGuidewhichisa manualthattheclientreceivesattheintroductoryconsultation.
Aspartoftheshelteredhousingrandomtestingoftheclientsforaddictivesub-stancesinurineiscarriedout.Thetestingmaybedoneduringthedayoraspartofthenightcheck.Thenightcheckiscarriedoutusuallytwicea month.Notonlydo theclientshaveresponsibilitiesbuttheyalsohavetheirrightsandoneofthemisforexampletherightforprivacy.TheP-centre’sstaffmembersentertheclients’roomsonlywhennecessaryandalwaysafterknocking.Clientsshouldbehavethesamewaytoeachother.
InrelationtotheMinistryofLabourandSocialAffairsaftercareprogrammesmustcomplywiththeregistrationconditionsandfollowthequalitystandardsofsocialservices.Theregistrationisadjudicatedbythecountyofficeaccordingtothepermanentresidencyofa naturalpersonorincaseofa legalpersontheheadquartersandwhentheprovideroftheorganisationofsocialservicesistheMinistryitselfitalsoissuestheregistration.
14 Articles JournalofExceptionalPeople,Volume1,Number4,2014
1.4 The client of an aftercare centre
Eachaftercarecentreisdesignedfora certaintargetgroup.Usuallyitisforpeoplewhowereaddictedtonarcoticsubstances,underwenta treatmentorhadbeenab-stinentforsometime.
TheSocialServicesActputsthepersonwhowantstoactivelyusetheservicestothepositionofa contractingparty.Thepersonbecomesa socialservicesuseratthetimeofsigningthecontract.Thenewlawthereforeusesthetermuser.A socialservicesusercanbeanyonewhohasa contractwitha socialservicesproviderasdeterminedbylaw.
Thetypesofclientsinaftercarecentresvaryaccordingtotherequirementsthattheclientshouldfulfilatenteringtheaftercareprogramme.ForexampleTheAftercareCentrewithShelteredHousingSananimprovidesitsservicestoclientswitha diag-nosisofnon-alcoholicdrugsdependencyorcombineddependencyonalcoholandnon-alcoholicdrugs.Otherrequirementsmayconcernabstinencefromillegaldrugsandalcoholforanuninterruptedperiodofthreemonthsorpreviousfullycompletedtreatmentinaninpatientoroutpatientsetting.Thesamelengthofabstinenceappliestopersonswhohavenotundergoneprevioustreatment.
1.4.1 The characteristics of the client of an aftercare centre
Peopleenteringanaftercareprogrammecomewithcertainpreviousexperienceandexperiences,somepositiveandsomenegative.Duringaftercareitisnecessarytobearinmindthattheclientpossessesa uniquepersonalityandtheapproachmustbeindividual.Humanpersonalityisshapedpartlybygeneticcode,forexampleasinthecaseofthetemperament,andpartlybyqualitiesgainedduringsocialisationinwhichthesocietyandfamilyinfluencethevaluesandpatternsofbehaviour.Sometheoreticalmodelsconsidertemperamentascrucialintheprocessofdevelopingaddictiontodrugsandalcohol.
Supportersofpsychoanalyticmodelsconsidersubstancedependentindividualstohaveseverementalconflicts,intermsofa strictsuperego.Theuseofalcoholorothersubstancesisanescapefromfeelingsofangerandfear.Accordingtobehav-iouralmodelssubstanceuseislearnedandmaintainedthroughclassicaloroperantconditioning.Scienceconsidersthoughtsandfeelingstobeimportantdeterminantsofbehaviourinresponsetotheenvironment.Giventhefundamentalroleofthefamilyinthelearningprocessfamilyfactorsmustbenoted.Majorityofaddictshadexperienceda “polar”approachfromtheirparents:over-protection,authoritarianism,dominancecombinedwithinconsistency,reducedinterestandhostility.Ina patho-genicfamilytheremaybeobservedfeweractivitiesdonetogetherandmorefrequent
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 15
conflicts,traumaanddeprivation.Individualsmayalsobeaffectedbythedependenceoffamilymembersonnon-alcoholicdrugsoralcohol.
Thelossofself-esteemwhichisa dysfunctionwitha focusontheneedsandbe-haviourofothersalsosignificantlycontributestotheformationofdependency.Theaddictedpersonfirstbindstoa person,andonlylatertoalcoholordrugs.Theuseofdrugsisnotalwaysassociatedwithpathologicalinfluenceoffamily,geneticpredispo-sitionorpersonalitydisorders.Sometimesthepersonisonlycuriousabouttheeffectsofthedrugs,isboredandwantstotrysomethingnew.Friendsandacquaintancescanthenbethosewhoofferhimthedrugandmentionitspositiveeffects.Itiswellknownthatpeergroupinfluencesthebehaviour,attitudesandvaluesofindividuals.
Amongthespecialcharacteristicsofpersonsenteringtheaftercareprogrammesarea reducedresistancetostress,problemswithself-esteem,aninabilitytomaintaina lastingrelationship,a fearofrejection,a lowemotionalresponse,a smallerdegreeofresponsibility,personalitydisorders(disharmoniousdevelopmentofthepersonality,polymorphicpsychopathy,socialmaladaptivedisordersandasthenicdisorders)andinformercannabis-baseddrugusersalsoa reducedmemory.(JeřábekinMiovský,2006)
1.4.2 The rights and responsibilities of the client in an aftercare centre
Foreffectivefunctioningofanaftercareprogrammeitisimportanttoclearlysetrulestobefollowedbothbytheclientandthestaffofthecentre.Therightsanddutiesoftheclientsaresimilarinallaftercarecenters.TherightsoftheclientcanbeadjustedbytheWorkersCodeofEthicswhichdescribestheproceduresforthestaff.ThedutiesandrightsoftheclientsareincludedintheAftercareCentre’sGuide,theknowledgeofwhichisoftena conditionfortheclient’sacceptanceintotheprogramme.Prospectiveserviceusersareinformedoftheirrightsanddutiesbeforesothattheyknowhowtobehaveandwhattoexpectfromthestaff.
Specifically,wepresenttherightsanddutiesintheAftercareCentreatP-centreinOlomouc.Thestaffofthiscentreexpectfromtheclientswillingnesstoworkonself-improvement,anactiveparticipationintheprogramme,abstinenceanda respectforcertainbasicrulessuchasnon-violence(mentalandphysical)toeveryoneintheP-centre,a respectfortheprivatepropertyoftheclientsandtheP-centreandnoplanningorcommittingcrimes.
16 Articles JournalofExceptionalPeople,Volume1,Number4,2014
2 Research concerning aftercare
Intheworlda wholeseriesofresearchconcerningtheimportanceofaddictionstreatmentswhetheritisdetoxification,inpatientoroutpatienttreatmentorafter-carehasbeenundertaken.AmongtheseareforexampletheAmericanresearchDATOS(DrugAbuseTreatmentOutcomesStudy)ortheBritishNTORS(NationalTreatmentOutcomesResearchStudy)(Radimecky,2009).IntheCzechRepublicitistheresearchbytheNationalMonitoringCentreforDrugsandDrugAddiction.Theresultsofthisresearchshowthattreatingdrug-usersiseffective,necessaryandbeneficialtothestate.Eveniftheclientsarenotsuccessfulinstayingabstinenttheirhealthandsocialstateimprovesinsuchmeasurethattheyrequirelessspecialistcare.Majorityofuserswhoundergotreatmentshowlow-riskbehaviouranda tendencytostartanothertreatmentearlierinthecaseofa relapse.Onthewebsiteaboutaddictol-ogymentionedabove(Radimecký,2009)itisalsostatedthatAmericanandBritishresearchshowedsameconclusionsconcerningtheaftercarefordependentpersons.Accordingtothese,aftercareprogrammesraisethesuccessratesofthetreatmentby80%,meaningthattheymaintainthechanges,especiallyabstinence,thatoccuredduringtreatment.Itisbecauseofwhathasbeenalreadymentionedabove:thehelpwiththetransitionfromthetreatmenttotheconditionsofthenormallifeandtheprovidedpsychologicalsupportinovercomingtheproblemsofeverydaylife.
Oneofnote-worthyworkscarriedoutatthePalackyUniversityistheresearchbyEvaMaierova(2009).Inherworksheexaminedthemotivationofsubstanceusersinherdiplomathesisentitled:“MotivationofFemaleDrugUsersinCompulsoryandVoluntaryTreatment”.
Theauthorfocusedtheresearchprimarilyonwomen.Inherresearchsheaimedtodeterminewhatmotivationthefemaleclientsincompulsorytreatmenthavecom-paredtotheclientsinvoluntarytreatment.Theanswersobtainedusinga question-naireandsemi-structuredinterviewshowedgreatermotivationfortreatmentinwomenwhoaretreatedbasedontheirownvoluntarydecision.
Clientsrecoveringinvoluntarytreatmentweremostmotivatedbyanimprove-mentinmentalhealth(86%)andrelationships(83%),furthermorebyimprovementsintheareaofwork(69%),livingstandard(68%),legalmatters(49%)andphysicalhealth(47%).Therespondentsofcompulsorytreatmentweremostmotivatedbyrelationships(68%),mentalhealth(61%),workarea(52%),livingstandard(51%),legalmatters(45%)andphysicalhealth(43%).
Inbothgroupsthereisa notablematchinmotivation.Theonlydifferencebetweenthegroupsisshowninmentalhealthandrelationshipswherethegreatestmotivatingfactorinvoluntarilytreatedclientsismentalhealthandinclientsundercompulsorytreatmentthefirstpositionistakenbyanimprovementinrelationships.
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 17
Anothersubjectintheresearchwerethetherapistsworkinginorganisationspro-vidingvoluntarytreatmentandtherapistsprovidingcompulsorytreatment.Inthisrespect,theinterestfocusesontheconfrontationofthetherapists’opinionsaboutthemotivationinthetreatmentoftheobtainedresponsesfromtheinterviewedclients.
Accordingtotherapistsofthecompulsorytreatmentgrouptherearethreetypesofmotives.Firstly,somemotivesareexternal,concerningrelationshipswithparentsandclosefriends,andabout70%oftheclientsaremotivatedbythese.Othermo-tivesarechildrenandtheclientsthemselves.Thesamecanbeseeninclientsundervoluntarytreatment.Inbothcasestheclientsenterthetreatmentattheinstigationofsomeoneelseorasa resultofadversecircumstances;insomeitisforcriminaloffenseandinsomeclientsundervoluntarytreatmentthereasonsareparentalpres-sureorunfavorablefinancialsituation.Initially,theirmotivatingforceisexternalandnegativeandonlylaterinthecourseofthetreatmentitstartstransformingintoinnerandpositivemotivation.
WewillattempttosummariseheretheresearchrealisedattheInstituteofSpecialEducationStudiesatthePalackyUniversity’sFacultyofEducationin2009–2013.
Researchno.1:Possibilitiesofsocialrehabilitationinaftercareprogrammes(Rů-žička,Martínková,2009)
Thisresearchconfirmstheimportanceofaftercareprogrammes.Itshowsthataftercareprogrammeshelptheclientstofinda jobandfriendsoutsidethedrugenvironment.Thesearetwopillarsofa successfulsocialrehabilitation.
Researchno.2:Thequalityoflifeingraduatesofaftercareprogrammes(Růžička,Klusová,2010)
ThisresearchfocusedonthemotivationforabstinenceingraduatesofTheAf-tercareCentreinP-center,Olomouc.Thegenderoftherespondentswasnotempha-sized;bothwomenandmeninanagerange24–35yearswereinterviewed.However,thereweremoremeninthegroup.
Theresultsobtainedusinga structuredinterviewshowedthatrespondents’mo-tivationforabstinenceliesinnegativeexperiencegainedattimesoftheaddictivebehaviour.Mentalandhealthproblemsassociatedwithdruguse,unsatisfactoryfi-nancialsituation,livingonthestreet,poorornorelationshipswithfamilymembersorclosepersonsandthesubordinationtothedrugwereamongtheexperience.A positivemotivationforabstinencewasindependence,self-control,achievementsintreatment,plansforthefutureandpositiverelationshipswithclosepeople.SomedegreeofsimilaritywiththeresultsofEvaMaierova’sresearchmaybenotedhere.
Researchno.3:Thequalityofaftercareprogrammesinmenaddictedtoalcohol(Růžička,Opavová,2013)
Theresultsshowthatthereisa significantdifferencebetweentheclients’needsandtheservicestheaftercarecentresprovide.Inotherwords,theresearchrevealeddifferencesbetweenwhatclientswantandneedandwhattheyencounteredina par-
18 Articles JournalofExceptionalPeople,Volume1,Number4,2014
ticularfacility.Oneofpossiblesolutionseemstoberegularsurveysonthisissuebyrespectiveaftercarefacilitiesandwheneverpossibleandappropriatea changeoftheofferedservicesorsomeofitsaspects.
Ithasalsobeenshownthattheimportanceofaspectsofofferedservicesiscom-parableinclientswhohaveusedtheservicesofanaftercarefacilityinthepastandthosewhoattendedanaftercarefacilityforthefirsttime.Itseemsitwouldbeusefultopaymoreattentionbothtothenewly-enrolledclientsaswellastheexistingones,especiallyintheareaofaspectsoftheservicesinordertoincreasethecredibilityandtherebythesupportoftheservices.Anotheroutcomeoftheresearchconfirmsthatthedependencyonthetherapistdoesnotchangewiththenumberofenrollmentinanaftercarefacility.Theresearchresultsshowthatthetherapistisa keyelementinanaftercarefacilityfortheclientsandthisfactdoesnotchangeduringtheaftercaretreatment.Finally,theresearchlooksatwhetherthereisa connectionbetweenanassessmentoftheservicesofanaftercarefacilityandtheirimportanceandeduca-tionandplaceofresidenceoftheclients.Nosignificantdifferencesbetweenthementionedcharacteristicswerenoted.
Researchno.4:Thequalityoflifeinaftercareprogrammesclientsasviewedbythestaff(Růžička,Hutyrová,2013)
Thisresearchexaminedtheviewsofaftercarecentresstaffonfourcriteriaoflifequalityinclients.Thesearehousing,work,relationshipsandleisuretime.Theresultsshowthatthemanagementofshelteredhousingshouldbetheresponsibilityoftheproviderwithoneappointedclient.Thisisa policyfrequentlyusedinpractice.
Itisinterestingtonotethatdespitetheimpactsofeconomiccrisistheclientshaveexpectationofemploymentandmanyareabletofindandkeepa job.Asregardstotherelationshipstheclientsaimtoestablisha long-termrelationship.A newstablepartnerisoftena motivationalelementfora newlifewithoutdrugs.
Theresponsesinregardstotheleisuretimevarysignificantly.Thistopicisverypopularanditseemsthatclientscomingfromcommunitiesaremoresuccessfulinplanningtheirleisuretimethanclientsreleasedfrompsychiatrichospitals.Therespondentsagreethatthequalityofleisuretimeisproportionaltothesuccessofabstinence.Manyaftercareprogrammessupportthisandguidetheclientstowardsmanydifferentactivitieslikehiking,watersports,artsetc.
Theresultsoftheresearchrealisedatourdepartmentcorrespondwiththeresultsofinternationalresearchandclearlyshowtheimportanceandimpactofaftercare.Forthisreasonweconsideritbeneficialtoapplytheprinciplesofaftercaretotheareaofinstitutionaleducation.
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 19
References
[1] JÍLEK,J.(2008)Ze závislosti do nezávislosti (spoluzávislí a nešťastní). 1.vyd.Praha:Ročníobdobí. [2] KALINA,K.a kol.Drogy a drogové závislosti 1: Mezioborový přístup.(2003)Praha:Úřadvlády
ČR. [3]KALINA,K.a kol.Drogy a drogové závislosti 2: Mezioborový přístup.(2003)Praha:Úřadvlády. [4]KLUSOVÁ,K.(2009)Motivace absolventů doléčovacích programů k abstinenci.Olomouc:Univer-
zitaPalackého.Ústavspeciálněpedagogickýchstudií,PedagogickáfakultaUP. [5]MAIEROVÁ,E.(2009)Motivace uživatelek návykových látek v nařízené ochranné léčbě a dobrovolné
léčbě.Olomouc:UniverzitaPalackého.KatedrapsychologieFilosofickéfakulty. [6]MIOVSKÝ,M.(2006)Kvalitativní přístup a metody v psychologickém výzkumu.1.vydání.Praha:
GradaPublishing. [7]OPAVOVÁK.(2013)Možnosti a formy podpory pro dlouhodobě abstinující alkoholiky.Olomouc:
UniverzitaPalackého.ÚstavspeciálněpedagogickýchstudiíPedagogickáfakulta. [8]POLÍNEK,M.(2013)Skupinováprácev rámcikrizovéintervence.InRŮŽIČKAa kol.Krizová
intervenceprospeciálnípedagogy,Olomouc,UP. [9]RŮŽIČKA,M.,MARTÍNKOVÁ,K.(2011)Významdoléčovacíhoporogramuproresocializaci
osobs drogovouzávislostíE-PedagogiumIII.[10]RŮŽIČKA,M.a kol.(2012)Krátkýintervenčníprogramprouživatelepervitinua terapeuticko
intervenčníprogramprouživatelepervitinu.Metodika,Olomouc:P-centrum.[11] http//WWW.p-centrum.cz
(reviewedtwice)
MichalRůžičkaUSSPdFUPOlomoucŽižkovonám.577140Olomouc
MilušeHutyrováUSSPdFUPOlomoucŽižkovonám.577140Olomouc
JulieWittmannováKAP,FtkUPOlomoucTř.Míru115771 11Olomouc
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 21
Research on family factors and support of children with cerebral palsy
(scientific paper)
Jiaojiao Wu, Shenglin Liu
Abstract: Families are not only the main living area for such children with cerebral palsy but also their most reliable spiritual home. During the long-term care process, family members, especially those main caregivers are under diverse great pressure, the primary aim of this study was to examine family factors and support strategies used. Data regarding situation of children with cerebral palsy and their family factors were obtained from patient records. Results indicated that family coping styles associate with family factors and spiritual support was among the family coping strategies used most often. Not surprisingly social support was used least often, caregivers tended to seek out internal support (e. g. support from the extended family). Findings suggest the necessity to target policy makers, community supports, and attitude towards family rehabilitation. In the long run, to meet diversified needs of the child and their families, it’s necessary to provide support services for the aim of enhancing children and parents’ self-help ability. Key words: Family factors; Family support; School adjustment; Child characteristics
Introduction
AccordingtothereportofChinesecerebralpalsynet,theincidencerateinChinawas1.8–4‰,anaverageof3.25‰amongsurvivinginfantsin2011.Therearemorethan6,000,000patientswithcerebralpalsy(CP),thenumberannuallyincreaseswith4to5millionnewborninfants.Adolescentsaccountformorethan60%,includingatleast500,000school-agechildren.Moreover,70%ofthesechildrenlivedinpoverty.FamiliesofchildrenwithCParefacedwithvariousstressorsstemmingfromdailycareofrehabilitationandpsychosocialchallenges.Thewayfamiliescopewiththesechallengescanimpacttheirphysicalandpsychologicalwell-being.
22 Articles JournalofExceptionalPeople,Volume1,Number4,2014
Thefieldofcerebralpalsyhasa longhistoryofobservinganddescribingthemedicaltechniques,themajorityofliteratureoncopinginfamiliesofchildrenwithcerebralpalsycomesfrommedicalrehabilitationotherthanfamilyfactorsthemselvesorsupportstheyused.Thestudyassessingfamilyfunctioningobtainsinformationfromprimarycaregiversinthefamily,whichassumesthattheprimarycaregiverbroughtmoreinfluencethanotherfamilymembers.
Methodology
Thisdescriptivestudyutilizeddatafrommultiplesourcestogaina pictureoffam-ilyfactorsandsupportofchildrenwithCP,theauthordesignedquestionnaireforfamilieswithCP,andhadfacetofaceinterviewswithprimarycaregivers.Ques-tionnaireswerecompletedbytheprimarycaregiverwhogenerallyspentthemosttimewiththechild(oneofthemwasa hirednanny).A totalof14familieswerecontactedasrespondentsforthesurveyinRehabilitationCenter,theDisabledFed-erationofSichuanProvince,China.Inthesecases,theseparateinterviewresponseswerecompared,andrespondentswerere-contactedtoclarifyanydiscrepanciesinthequestionnaireprovided.
Quantitativeandqualitativedataanalysistechniqueswereusedtoextractthemes.Forthequantitativeanalysis,respondentswereaskedaboutresearchprocessofdi-agnosis,degreeofillnessandimpactonfamilies,aswellasfamilycopingstylesandsupportusedetc.
Qualitativeanalyticmethodswereusedtoanalyzeresponsestothestandardin-terview.Theresearchteamstudiedtheinterviewresponsescarefully,lookingforemergingthemesoffamilyfactorsandcategoriesofsupport.A codingsystemwasdeveloped,andsoundrecordingdataweresortedaccordingto“familiesofcodes”(Bogdan&Biklen,1998).Theresearchteam,togetherwithrespondentsthroughfocusgroup,discussedrecommendationstoguidefuturefamilycopingandsupportdevelopmentwork.
Findings
Children characteristics in different familiesNocaregiversinthefourteenfamiliesrefusedtoparticipateatthetimeoftheirchil-dren’shomerehabilitation.Thus,thetotalsampleconsistedof14familiesofchildrenwithCPrangeinagefrom2to6years.Thereare9intheclassforyoungerchildren(meanage-3.5years),5intheclassfortheelder(meanage-5.4years).Justoverhalfofthechildrenwerefemale(57.14%),male(42.86%).Significantrelationshipsbe-tweenparentalandchildcopinghavebeenfoundforbothgirlsandboys(Kliewer
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 23
&Lewis,1995),andamongvariousillnessgroups(Brownetal.,1993;Kupstetal.,1995).Elevenchildrenwerebornintheone-childfamily(78.57%),anothermaleandotherfemaleswerenot(21.43%).
Onesignificantquestionfortheresearchwastheageextentofchildren,familycopingstrategiesandsupportsuseddiscussinglatermightdifferfromeachotherbecausedifferentageofdefinitediagnosis(seeTable1).
Table 1:Ageofdefinitediagnosis
Age (month) Frequency Percentage (%) Accumulative (%)Severaldaysafterbirth 1 7.1 7.1
1 1 7.1 14.33 1 7.1 21.47 1 7.1 28.58 1 7.1 35.6
12 2 14.3 49.813 1 7.1 56.914 1 7.1 64.015 1 7.1 71.116 1 7.1 78.218 1 7.1 85.326 1 7.1 92.4
Uncertain 1 7.1 99.5Total 14 100 Meanage=11.08
AsshowninTable1,mostchildrenwithCPwerediagnosedbeforeoneyearold(50%),othergotdiagnosisbeforetwoyearsold(99%).Suchchildrenhavebeenintherehabilitationcenterfortrainingrangingintimefrom1monthto36months(meantime-10.6months).Fromthefirstdayofthechild,parentsobservedthechangeofchildrendaybyday,theytookcareofthemcarefullyandnoticedchangesincludingtwisting,sittingorcrawling.Parentsarethemainoriginalpowertotakechildrentothehospitalwhiletheynoticedchildren’sanyabnormalbehavior.
24 Articles JournalofExceptionalPeople,Volume1,Number4,2014
Table 2:Typesandpathogenyofceberalpalsy
Sample
Pathogeny
TypesPremature delivery
Dystocia Asphyxia IcterusLow body
weightHyperpyrexia
Multiple labor
Encephalic Other
1 √ Convulsion
2 Unclear Synthesis
3 √ Convulsion
4 √ Synthesis
5 √ Convulsion
6 √ Ataxia
7 √ √ Low tension
8 Unclear Low tension
9 Unclear Convulsion
10 √ Convulsion
11 √ Athetosis
12 √ Convulsion
13 √ √ √ Convulsion
14 √ Synthesis
Table2summarizesthemainpathogenyandtypesofthechildrenwithCP.Just35.71%children’sillnesswerecausedbyprematuredelivery,followedby21.43%werecausedbyasphyxia,14.29%werecausedbyicterus.Cerebralpalsymayresultsfrommanyreasonslikedeprivalofoxygen,cerebralhemorrhage,toxicosisortrau-maticbraininjury.Accordingtointelligencetest,theaverageintelligencequotientofchildrenwithCPislowerthanthatofcommonpeople.
Family characteristicsTounderstandthefamilysituationandsupportsused,itisnecessarytoexaminethenatureoffamilyasa system.Someevidencesuggeststhatfamilyfactorsassoci-atewithpatternsoffamilycoping.TakeBrazil&Kruegerasanexample,theydidresearchonone-versustwo-parenthomes(2002).Sodoestotherelationshipofthecaregiver,thebiologicalversusalternativecaregiverswiththechild(Rose&Clark-Alexander,1998).
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 25
Table 3:Primarycaregiversofchildren
Frequence People Percentage (%)6 Parents 42.862 Parentsandfather’smother 14.291 Parentsandfather’sparents 7.141 Parentsandfourgrandparents 7.142 Mother 14.292 Fatherandfather’sparents 14.29
Backgrounddatawereobtainedthroughquestionnaireattheon-studyevaluation.Caregiversprovidedinformationonfamilyenvironmentfactorsincludingcomposi-tionofthefamily(seeTable4),relationshipofthechildwiththeprimarycaregiver(biological,adoptive,foster,extendedfamily).Sincenofamilyfellintothecategoriesoffosterparentfamily,wediscussedtwogroups:biologicalversusextendedfamily.Researchershaveexaminedtheprimarycaregiverthechildrenlivedwith,asshowninTable3,about71.4%childrenlivewithparents.About28.5%childrenlivewithgrandparents.Thepercentageofchildrenwholiveinthecorefamilyis42.8%,andthepercentageofchildrenwholiveinthereorganizedorseparatedfamilyis7.1%.Twelveofthemaincaregiversarefemale,sevenofthemaremothers,fourofthemaregrandparents,anda nannylivingin.Fourofthemaincaregiversaremale,twoofthemarefathers,andanothertwoarefathers’fathers.Primarycaregivers’meanyearofeducation(8.3years)islowerthanthatofparents(12.8years).
Moredataindicatesparents’characteristicsofageaswellasoccupation.Theyoungestmotheristwenty-eightyearsold,theoldestisthirty-four(meanage–30.5).Nineofthemhavenocareer,anothertwomothersarefarmersandthreeareworkers.Astothefather,theyoungestisthirtyyearsold,theoldestoneisthirty-six(meanage–32.4).Tenofthemareworkers,threearefarmers,andonefathercarriesoninoccupation.Allparentsareeducated,howeveronly14.2%graduatedfromuniver-sity.Othersarehighschoolgraduates(43%)andprimaryschoolgraduates(42.8%).
ThediseaseofCPinfluenceda smallnumberofparents’maritalstatusandmostprimarycaregivers’personalrelationship.Inreverse,certainfamilyenvironmentfactorshavebeenfoundtoinfluencechildcopingstyles,suchasparentalsupportive-nessandthelevelofstructureandorganizationwithinthehome(Hardyetal.,1993).
26 Articles JournalofExceptionalPeople,Volume1,Number4,2014
Table 4:Maritalstatusofparents
Marriage Frequency Percentage (%) Accumulative (%)Harmonious 2 14.30 14.30Normal 9 64.30 78.60Unharmonious 2 14.30 92.90Separate 1 7.10 100.00Divorced 0 0.00 100.00Total 14 100.00 100.00
TheprimarycaregiversgaveresponsetorelativitybetweenchildrenwithCPandmaritalstatusininterviewsactively.Theyassessedwhethertherewascorrelationbetweensampleparents’maritalstatusandchildren’sCPillnessbyfive-pointscale(1–stronglydisagree,5–stronglyagree).Goodreliabilityandvalidityhavebeenreceived.Two-parenthomesarecommon,thereisn’tsingle-parenthome,butonecouplemayagreetodivorceeachotheraftera longseparation.
Family coping and support Sincea limitedamountofresearchhassuggestedassociationsbetweencopingandfamilyfactors,exploratoryanalyseswillbeconductedtoassessrelationshipsamongthesevariables.
Conceptualizingcopingstrategiesreferstopassiveandactivetechniques.Whena personrelinquishescontrolofa problemtoothers,passivecopingtechniquesoc-cur,whileactivecopinginvolvesanattempttotakea moreactiveroleindealingwitha problem(Brown&Nicassio,1987).Researchhasdemonstratedthatuseofdenialisassociatedwithmorenegativeemotionalimpactatchildrenwithtraumaticbraininjury(Wadeetal.,2001),suggestingthatfamilies’useofvariouscopingstrategiesmayinfluencetheemotionalburdenofpaediatricinjuries.
Tounderstandtheeffectsthatspecificstrategiescanhaveonone’sabilitytocopewithillnessrelatedstressors,pastseveralstudieshavecomparedtheeffectivenessofpassiveversusactivestylesofcoping.Mostfoundlittlesupportforpassivetechniqueswithrespecttophysicalandpsychologicaloutcomes.
Researchersdida surveyofcaregivers’friendlyintercourse.Sixcaregiversusuallyaskedhelpfromextendedfamily,threecaregivershadgoodrelationshipwithneigh-bors,twocaregiverskeptcontactwithfriends.Table5illustratesprimarycaregivers’contactwithfamily,specialists,friendsandothers,differentiatingtheemotion-fo-cusedsupportversustime-focusedsupport.
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 27
Table 5:Primarycaregivers’intercoursestatus
Types Examples Frequency Percentage (%)Kinfolks Siblings 12 86Specialists Teachersinrehabilitationcenter 9 64Others Neighbors 5 36Friends Colleagues 4 29
Emotion-focused(Lazarus&Folkman,1984)supportoccurswhenanindividualbe-lievesthatnothingcanbedonetochangethesituationatthebeginningofdiagnosisanddepressesunderhigherlevelsofdistressduringthelongtimeofcaring.Time-focusedsupportisusedwhenanindividualviewsa stressfulsituationasamenabletotakecareofchildren.
Toourknowledge,mostsupportforfamilyisassociatedwithdecreasedemotionaldistress.Ourstudyhasspecificallyexaminedvariousrehabilitationormedicaltech-niquesamongchildrenwithCP,andfindingsindicatedthatmoreseriousdegreeofCPexperiencedmorepsychologicaldistressthanothers.Combinedemotion-andtime-focusedsupport,theprimarycaregiverhavereceivedassistancefromdifferentnumberofpeople(seeTable6).
Table 6:Numberofpeopleofferinghelp
Number of people Frequency Percentage (%) Accumulative (%)0 2 14.30 14.301 1 7.10 21.402 3 21.40 42.803 3 21.40 64.204 1 7.10 71.305 2 14.30 85.608 1 7.10 92.70
Invalidation 1 7.10 92.70Total 14 100.00 92.70
Checkingthelistofofferinghelp,caregivers’parentsarethemosthelpfulones(35.7%),spouses’parentsranknumbertwo(22.3%).Nurturinga childwithCPisa greatchallengeincludingstressfrompsychology,spirit,andeconomyetc.
School-agechildrenwithCPinthesecasesdidnotgotoschool,thus,theirex-pensesrelatetodailyexpense,medicalandrehabilitationfee.Threefamilies(25%)comefromcounties,andnine(75%)arefromcountries.Thelowestmonthlyfamily
28 Articles JournalofExceptionalPeople,Volume1,Number4,2014
incomeis1,500RMB(215USdollar),thehighestis8000RMB(1143USdollar).Thefamilyincomeaverages4278RMB(611USdollar)a month.WiththerocketingupofconsumerpriceindexinChina,morethan80%respondentsstronglyagreewiththeheaviestburdenforthefamilyresultingfromeconomy.
Figure 1:Typesofsocialsupport
AmongfamiliesofchildrenwithCP,it’sobviouslythatsocialsupportasa meansofcopingismuchlessthanthefamilyself-support.(e.g.spiritualsupportfromextendedfamily).Thelackofsocialsupportamongillnesspopulationsisnota newfinding,norisituniquetoindividualswithCP.Theresearchhasdemonstratedthatchildrenwithchronicconditionsreportlowerperceptionsofsupportandsmallersupportnetworksthanhealthychildren,andperceptionsofsocialsupportmayvarybetweenillnessgroups(Ellertonetal.,1996).ClassifyingsocialsupportisapparentasshowninFigure1,caregiversratedscoresforsomekindsofactualsupportlikeskillsforrehabilitationfrommembersofthemedicalteamandinformationfrommentalhealthcounselorsorgovernmentalofficesetc.received.Studysuggestedthata considerableportionofcaregiversspendinglittleornotimesocializingwithfriendsandthatlowerperceptionsofsocialsupportareassociatedwithfeeling.Thechildorthefamily’seconomyneedsarefarbeyondthewelfarefinancialsupport.
Respondentsrecalledthedayswhentheyknewtheillnessofchildrenandde-scribedtheirfeelingbymanynegativewordssuchas“worry,fear,rage,self-accusa-tion,sin”andhence.A feelingofutterhelplessnesswashedovereveryfamilymember.Comparingwithemotionalburdenamongthemintheearlydaysofdiagnosis,car-egiversfeltmorepeacefulatpresent(seeFigure2).
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 29
Figure 2:Primarycaregivers’mentation
DuringthetimeofparentingthechildwithCP,somefamiliesatpresentarecharac-terizedbycloserelationshipandmutualsupport,butwithoutanyself-helporgani-zationforcaregiversorparents.Theresearchdemonstratedthatboththedegreeofaltruismandtolerancetowarddifferenceincreased,theytendtooffermorehelpthanbefore.Fortheverypessimisticcaregiver,a senseoffatiguefora longtimeanddeterioratingeconomicstatuswashedthemoverbecauseofthechild’sillness.
Discussion
Thisfindingdidnotreachspecificstatisticalsignificanceinregionaldifferenceoffamily.Thismaybepartlyduetothefactofthelimitationofa smallsample.Whilepreviousstudieshaveexaminedfamilyvariablesastheyrelatetocopingintheindi-vidualwiththeillness,whereasthisstudyassessescopinginthefamily.It’snecessarybecauseeconomicstatusheremaydifferfromthere,onehypothesisofwhichisas-sociatedwithsocialsupportfromlocalgovernments.Anotherpossibilityisthatthephysicalandemotionalimpactoftheirowndiseasemakesitdifficultforcaregiverstoobtainappropriatesupportservicesfortheirchild.Follow-upresearchisneededtocompareeconomicstatusoffamiliesfromdifferentdistricts.Furtherstudiesshouldalsobeneededfortheimpactofparents’unemploymentandeconomicstressonsocialsupport.
30 Articles JournalofExceptionalPeople,Volume1,Number4,2014
Familieswhousepassivecopingmayfeelhelplessregardingtotheirability.Thosefamiliesmayrelinquishcontrolofdecisionsaboutthechild’sdiseasetoothers,suchasthemedicalteam,ratherthanworryabouttheseproblemsthemselves.Thismaybehelpfulinsomesituations,butcouldpotentiallyleadtoproblemsifcaregiversarenotindependent.
Activecopingstrategiespositivelyimpactthechild’smedicalstatusandthefamily.Itemsaboutpassivecopingstylesinquestionnairereflectanavoidanceofproblemsituationsorthetendencytorelinquishcontrolofone’sproblemstoothers.
Wefailedtofindsignificantrelationshipsbetweencharacteristicsofthematernalcaregiverandfamilycopingstyles.However,manystudieshaveputforthevidencethatfamilycomposition(two-parentfamiliesversussingle-parentfamilies)isrelatedtocopingstyles.Moreover,pastresearchwithhealthyfamilieshasfoundthatsinglemothersusemorestrategiesrelatedtoacceptingresponsibilitycomparedwithmoth-ersintwo-parentfamilies(Compas&Williams,1990).
Theexternalsupportmostfrequentlyendorsedbyfamiliesinourstudyincludedactualandspiritualsupport.Meansofactualsupportmainlyrelatestomedicalskill,informationandfinancialway,spiritualsupportisassociatedwithtimeandemotion.Thespiritualdimensionisimportantforfamilies’qualityoflifeanditsimplicationsforcaringpractice.Thedataindicatedthatcaregiverstendedtoseekouthelpfromtheextendedfamilyorfriendsforspiritualsupport.Comparingwithdevelopedcoun-tries,socialwelfarepolicyneedstobeadvancedforservicingchildrenwithspecialneedsandtheirfamiliesinpartsofChina.ThefindingdemonstratedthatfamiliesofchildrenwithCPorprimarycaregiverstendedtoseekoutlesssupportfromcom-munityresourcesthanextendedfamilies.Thesupportresourcesshouldbeenlargedincludingcommunitysupport.Tomakefulluseofcommunityresource,promotingcommunityinvolvementaimedatrespectingandsupportingthefamilyofchildrenwithCP.Moreover,exploratoryanalysesrevealedthenecessitytoadvocatelifelongfamilyrehabilitationforchildrenwithCP.
Giventhatsocialsupportcanbea valuableresourceinmaintainingtheemotionalhealthoffamiliesdealingwithchronicillness(Neville,1998),itisconcerningthatfamiliesofchildrenwithCParenotrelyingonsocialresourcesmoreoften.Whilethisiscertainlya validconcern,theabsenceofexternalsupportcouldnegativelyaffectpsychologicalandphysicalwell-being.Thus,thereisa needforinterventionsaimedathelpingcaregiverseffectivelyseekoutandutilizesupportivesocialrelationships.Inaddition,it’simportantinthelongruntoimprovetheabilityforthefamilytakinganactiveroleinoverseeingtheirchild’sdevelopment.
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 31
References
[1] Bogdan,RobertC.,&Biklen,SariK.(1998).Qualitative research for education: An introduction to theory and methods.Boston:Allyn&Bacon.
[2] Brazil,K.&Krueger,P. (2002).Patternsoffamilyadaptationtochildhoodasthma.Journal of Paediatric Nursing, 17(3),167–173.
[3] Brown,G.K.&Nicassion,P.M.(1987).Developmentofa questionnairefortheassessmentofactiveandpassivecopingstrategiesinchronicpainpatients.Pain,31,53–64.
[4] Brown,R.T.,Kaslow,N.J.,Doepke,K.,Buchanan,I.,Eckman,J.,Baldwin,K.&Compas,B.E.& Willams,R.A.(1990).Stress,coping,andadjustmentinmothersandyoungadolescentsinsingleandtwo-parentfamilies.American Journal of Community Psychology, 18(4),525–545.
[5]DingJianying.(2010).Homerehabilitationandmanagementofchildrenwithcerebralpalsy.Clinical Journal of Traditional Chinese Medicine. 22(8).
[6]EllertonM. L.,StewartM. J.,RitchieJ. A.&Hirth,A. M.(1996).Socialsupportinchildrenwitha chroniccondition.Canadian Journal of Nursing Research, 28(4),15–36.
[7]FreemanMiller.(2005)Cerebral Palsy.SpringerScience&BusinessMedia,168. [8]Goonan,B.(1993).Psychosocialandfamilyfunctioninginchildrenwithsicklecellsyndrome
andtheirmothers.Journal of the American Academy of Child and Adolescent Psychiatry, 32(3),545–553.
[9]HardyD.F.,PowerT.G.&JaedickeS.(1993).Examiningtherelationofparentingtochildren’scopingwitheverydaystress.Child Development,64,1829–1841.
[10] HinojosaJ.&AndersonJ.(1991). Mothers’perceptionsofhometreatmentprogramsfortheirpreschoolchildrenwithcerebralpalsy.(3).
[11] Kliewer,W.&Lewis,H.(1995).FamilyinfluencesoncopingprocessesinchildrenandadolescentswithSickleCellDisease.Journal of Paediatric Psychology, 20(4),511–525.
[12] Kong,F.,Perrucci,C.C.&Perrucci,R.(1993).Theimpactofunemploymentandeconomicstressonsocialsupport.Community Mental Health Journal, 29(3),205–221.
[13] LammiB.M.(2003).Theeffectsoffamily-centredfunctionaltherapyontheoccupationalperfor-manceofchildrenwithcerebralpalsy.(5)
[14] Lazarus,R.S.&Folkman,S.(1984).Stress,appraisalandcoping.NewYork:Springer.[15]Leavitt,M.B.(1990).Familyrecoveryaftervascularsurgery.Heart and Lung: Journal of Critical
Care,19(5,part1),486–490.[16]Leiter,M.(1990).Theimpactoffamilyresources,controlcoping,andskillutilizationonthe
developmentofburnout:a longitudinalstudy.Human Relations, 43(11),1067–1083.[17]LiChunxiang,FengYafanet.al.(2002).Familyrehabilitationonchildrenwithcerebralpalsy.
Chinese Journal of Rehabilitation Theory and Practice. 8(1)[18]LiuShenglin.(2010).Researchonfamilyresilienceinfamiliesofchildrenwithhearingimpair-
ment.Dissertation of Palacky University, Olomouc, Czech Republic[19]LiZeping,ShenMin.(2007).A surveyonrequirementoffamilyrehabilitationtrainingofguid-
anceforcerebralpalsychildreninShanghai. Chinese Journal of Rehabilitation Theory and Practice, 13(8).
[20] NancieR.Finnie.(2008).Managementofrehabilitationinfamilywithcerebralpalsy.Shanghai:ScienceandTechnologyPress.
[21] Nevilie,K.(1998).Therelationshipsamonguncertainty,socialsupport,andpsychologicaldistressinadolescentsrecentlydiagnosedwithcancer.Journal of Paediatric Oncology Nursing, 15(1),37–46.
[22]Rose,M.A.&Clark-Alexander,B.(1998).CaregiversofchildrenwithHIV/AIDS:Qualityoflifeandcopingstyles.
32 Articles JournalofExceptionalPeople,Volume1,Number4,2014
[23] RosenbaumP.,PanethN.,LevitonA.,GoldsteinM.,BaxM.,DamianoD.,DanB.,JacobssonB.(2007).A report:thedefinitionandclassificationofcerebralpalsy.
[24] Wade,S.L.,Yeates,K.O.,Borawski,E.A.,Taylor,H.G.,Drotar,D.&Stancin,T.(2001).There-lationshipofcaregivercopingtofamilyoutcomesduringtheinitialyearfollowingpaediatrictraumaticinjury.Journal of Consulting and Clinical Psychology, 69(3),406–415.
(reviewedtwice)
Mgr. JiaojiaoWu,Prof. ShenglinLiu,Ph.DFacultyofEducationSichuanNormalUniversityChina
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 33
Communication in students with severe cerebral palsy
(scientific paper)
Jiří Kantor, Eva Urbanovská
Abstract: This paper deals with the communication process in students with severe cerebral palsy in whom there is a combination of severe mental, communicational and physical disability. It defines the basic terminology, some core concepts and describes selected findings of a qualitative study based on open, axial and selective coding. This paper describes the main categories and subcategories of the study regarding commu-nication reactions of students, communicational topics and some of the factors that enhance good interpretation of the communication process. It also incorporates a visual diagram of a model for communication processes between teacher and student and discusses various aspects of this model, suggestions for special education practice and for further research.
Key words: cerebral palsy, communication, open-axis coding, axial coding, teacher’s authenticity
1 Introduction to the Issue
Cerebralpalsy(CP)isa complexfunctionaldisorderthatimpactsmanyimpor-tantdailyactivities.InthefieldofrehabilitationtheaspectsoffunctionalhealthareincreasinglybeingemphasisedindefiningCPwhileclinicalcharacteristicsofthedisordermovetothebackground.ForexampleAshwaldefinesCPas“a groupofnon-progressivenon-communicableneurologicconditionscausingphysicalandcog-nitivedisabilitiesduringthedevelopmentofanindividualanddisruptingfunctionalperformance,participation,mobility,musclestrength,posturalfunctions,muscletonus,feelings,visualfunctions,perception,communicationandbehaviour”(Ashwal,inPhipps,Roberts,2012,pp.422).
34 Articles JournalofExceptionalPeople,Volume1,Number4,2014
Inthisstudywewilladdressthecommunicationprocessinstudentswithseverecerebralpalsy.Someconclusionsofa researchundertakeninstudentswithseverelimitationsofmovement,mentalfunctionsandcommunicationwillbepresented.Thesestudentsarenotabletouseverbalspeechtocommunicate.Accordingtoem-piricalfindingsfrompedagogicpracticethereisalsoa verylittlepossibilitytousestandardisedsystemsofalternativeandaugmentativecommunication(AAC)inthesecases.Thereforea questionarises:“Howdo teacherscommunicatewiththesestu-dentsinthecourseofaneducationalprocess?”Communicationprocessesinthesestudentsarestillinsufficientlyexplored.Wewillattemptinthisstudytoprovideatleasta partialanswertotheabovestatedquestion.
InresearchofcommunicationbetweentheteacherandthestudentwithsevereCPfocusmustbedirectedatcommunicationasa complexsocialactivitythathasmultiplepurposesforsocialinteraction.Itmustberememberedthat,becauseoftheircongenitaldisorder,thesestudentsneverexperiencenaturalcommunicationwithothersandthereforecannotbuildonnormaldevelopmentalexperiences.A whole-someviewofthecommunicationprocessdoesnotfocussolelyontheformofverbalspeechsubstitutebutalsoonthecontextofcommunication,communicationneedsoftheindividual,theprocessofinteractionitselfaswellasitscourse,cognitiveprocessesofbothpartiesincommunicationorthepossibilityofinterdisciplinarycooperationincreationofappropriatemeansofAAC.Becauseofthebroadnessoftheproblem,inthispaper,wecanonlytouchuponthethemes.Someofthethemesarementionedindiscussionassuggestionsforfurtherresearchinthefield.
2 Basic terminology
Variousscholarlysourcesusedifferentterminologyinthecontextofcommunica-tion.Wewillofferdefinitionsoftheterminologyusedinthepaperforanalysingthecommunicationprocess.
Communication partnersBycommunicationpartnersaremeanttheteacherandthestudentwithsevereCP.Eachoneischaracteristicforhavingpreviousexperiencesthatarebeingbroughtintotheinteraction,aswellaspersonalitytraits,needs,interests,motivation,beliefs,cur-rentemotionalstate,socialrolesandstatus,age,genderora positionofsuperioritythatmaybeusedintheinteraction,tonamejusta fewcharacteristics.
Theissueofcommunicationneedsofa studentwithsevereCPneedstobead-dressedinmoredetail.Itisbecauseassumptionsaboutcommunicationcontentinthesestudentscannotbemadefromthecommunicationsubjectsofhealthypeers.Somecontributionsonfunctionalcommunicationofstudentsintroduceusefultech-
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 35
niquesstimulatingthoughtsontheidentificationofrelevantcommunicationcontent(Bigge,Best,Heller,2010).Thesetechniquesareespeciallyusefulinstudentswithhigherfunctionallevelofmentalabilitiesorinstudentswithdisabilitythatoccurredina laterage.Thorova(2006)mentionscommunicationcontentinrelationtothecommunicationofstudentswithautismspectrumdisorders.Sheconsidersasrel-evantsubjectsforexampletheexpressionofagreementanddisagreement,requestforfood,drink,favouriteobject,usingthetoiletorgettinghelp,expressionof“more”and“enough”,callingforattention,signalisinganobjectoractivity,commentinganactivity,expressionoffeelings,acquiringinformationorpolitephrasesinsocialcommunication(Thorova,2006).Thespecificityofthefunctionalstateinearlybrainlesions,however,doesnotallowfordrawingcomparisonsbetweencommunicationneedsinstudentswithCPandstudentswithautismspectrumdisordersalthoughtheremaybecertainsimilarities.
Communication EnvironmentCommunicationenvironmentisthephysicalsurroundingsinwhichtheinteractiontakesplaceandincludesforexamplelighting,theorderofobjectsintheroom,thepresenceofotherpeople,odours,sounds,etc.Communicationenvironmentco-cre-atesa particularatmospherethatinfluencesthecommunicationpartners.Inanalysesabout communication the psychosocial element of educational setting needs to beexamined.Scholarlysourcesdifferentiatebetweentheschoolclimate,classroomclimateandclassroomatmosphere.Wemayalsofindthetermsocialclimate(Allodi,2008).Theclassroomatmosphereespeciallyinfluencesexistingcommunication.Inpracticewemayobservesituationswhenteacher’slackofconcentrationcausesa ris-inganxietyinthestudent.Asa resultthestudentmaybecomecloseandlosemotiva-tiontoenterintocommunication.
Theinfluenceoftheschoolenvironmentonthespecificsofcommunicationneedsmustalsobeconsidered.Someteacherssaythatgiventheregularandsufficientfoodintakeduringthedayitisoflittlefunctionaluseforthestudentstobeabletoaskforfoodordrink.Thisneed,however,isinthespecifictrainingmethodologiesofAACclassifiedasthemostfrequentlyusedantecedentsforincreasingthestudent’smotivationtocommunicate(Knapcová,2009,Richman,1999).Itisevidentthatthecommunicationneedsofstudentsintheschoolenvironmentmaydifferfromtheneedsinthehomeorotherenvironment.Itisnecessarytoexaminethemseparately,incloserelationtoeducationalandsocialsituationsduringtheclass.Inthisareawealsolackrelevantdata.
36 Articles JournalofExceptionalPeople,Volume1,Number4,2014
Context of InteractionThecontextofinteractionistheoverallframeworkinwhichtheinteractiontakesplace.Itincludesconnectiontopreviousandfollowingeventstotheinteractiontime,thewayofachievingmutualunderstanding,thesocialrolesofcommunica-tionpartners,etc.Thecontextisveryimportanttothecommunicationpartnersofthestudentsintermsofunderstandingcommunicationintentionsbecauseteachersinterpreta largesectionofnon-verbalsignalsofstudentsonthebasisofthecontextinwhichthesesignalshappens.Majorityofpublicationsandresearchaboutthecom-municationprocessesinstudentswithCPhaveuntilpresentfocusedononeofthespecificissues.Contextisverydifficulttostudybecauseitinvolvesa greatvarietyofdifferentcontextualsituations.Itsanalysis,however,iscrucialfora comprehensiveunderstandingofthecommunicationprocess.
Communication ChannelThecommunicationchannelisa meansfortransmittinginformationbetweenthesubjects,a meansofmutualcommunication.In-personcommunicationincludesverbalandnon-verbalmeansofcommunication.Inthisconnectionthereexistmanystandardisedaswellasnon-standardisedsystems of alternative communication.InternationalSocietyforAugmentativeandAlternativeCommunication(ISAAC)definesAACas:“A setoftoolsandstrategiesthatanindividualusestosolveeverydaycommunicativechallenges.Communicationcantakemanyformssuchas:speech,a sharedglance,text,gestures,facialexpressions,touch,signlanguage,symbols,pictures,speech-generatingdevices,etc.Everyoneusesmultipleformsofcommu-nication,baseduponthecontextandourcommunicationpartner.Effectivecom-municationoccurswhentheintentandmeaningofoneindividualisunderstoodbyanotherperson.Theformislessimportantthanthesuccessfulunderstandingofthemessage.”(Burkhart,cit.20.3.2013)
Theconclusionsofsomeresearchprojects(Jelinkova,2013)thatanalysedcom-municationmeansinstudentswithseveremultipledisabilitiesshowthatthemostfrequentlyusedmeansdo notcorrelatewithinformationabouttheusabilityoftheAACsystemsindomesticandforeignscholarlyliterature.TostateoneexamplethecommunicationsystemBlissortheDosamethodisfrequentlycitedinscholarlyliterature.Neitherofthesesystemsisbeingusedinpracticealthoughbothareinter-estingcontributionstotheAACissue.Othercommunicationsystemsontheotherhandarenotadequatelydescribedyetbecausetheyemergedfrommoderninnova-tionsinelectronics(forexamplethepossibilitiesofusingtablets).
Studentswiththemostseverefunctionallimitationsinallofthesethreeareas—communication,movementandmentalfunctions—posethebiggestproblemforthe
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 37
creationofanadequatecommunicationsystem.Inresearchtobepresentedbelow,wehavedividedthisgroupofstudentsintotwogroups:• Studentsthatareabletocommunicateatthelevelofexpressingthecommunica-
tionintent(atleastintheformofexpressingyesandno)–inthesestudentsthecommonsystemAACismorelikelytobesuccessful(ETRAN,referentialobjects,picturesetc).
• Studentsthatspontaneouslyexpresslikesanddislikeswhichisthebaseforteach-er’sunderstanding–herethespontaneousnon-verbalreactionsofthestudentarethebasiccommunicationmeans.
Non-verbalcommunicationmaybedividedaccordingtotheusageofbody,timeandspacemeans.Commonly,thesetypesarerecognisedinhealthypersons:facialexpression,gestures,haptics,proxemicsandcommunicationbyaction(Vybiral,Roubaletal.,2010).InstudentswithsevereCPwelackthedescriptionofrelevantnon-verbalsignalsthattheteachersuseforinterpretingthecommunicationintentsofthestudents.
FeedbackFeedbackistheresponseofthecommunicationpartnerorfeedbacktowhatwecommunicatethroughwhatwesay,hear,see,feel,etc.Wheninterpretingfeedbackmanyerrorsmayoccursincea varietyofcommunicationnoisesinterferesincom-municationbetweena teacheranda studentwithseveremultipledisabilitiesandthesenoisesdisrupttheinteractionprocess.DeVito(2008)distinguishesnoisephysi-cal,physiological,psychologicalandsemantic.Examplesfromteachingexperienceshowthatnewteachersoftentendtounderestimatetheabilityofthestudenttoperceivestimuliandactivityaround.Becauseoflackofcommunicationresponsestheseteachersconcludea lowerlevelofsensory-cognitiveprocesseswhichcanhaveseriousconsequencesforthestudentmanifestedforexampleastheeliminationofteacher’sattemptsforinteraction.
Inthefollowingchapterswewilloffera descriptionoftheresearchundertakenaspartofdissertationworkcalled“Educationaloutputsintheareaofsocialabilitiesinchildrenwithcerebralpalsy”andwhichwasfurtherelaboratedonina specialisedresearchofIGA.Wewillsummarisethemostimportantfindingsconcerningcom-municationandofferconclusionsthatcanbeusedforfurtherexaminationofthedescribedproblematicareas.
38 Articles JournalofExceptionalPeople,Volume1,Number4,2014
3 Research Aims and Research Sample
Theresearchaimsconcernedtheseareas:• AnexaminationofcommunicationchannelsinstudentswithsevereCPwho
communicateonthelevelofspontaneousexpressionoflikesanddislikes.• Anunderstandingofcommunicationneedsofthesestudents.• Understandingfactorsthathelpteachersinterpretthecommunicationsignalsof
students.• Relationbetweencommunicationandothercategoriesoftheeducationprocess.
A qualitativemethodologywasusedtoanswertheseaims.Extensivedatawascol-lectedaboutvariousaspectsoftheeducationprocessinstudentswithsevereCPfrom45semi-structuredinterviewswithteachers,ananalysisofpedagogicdocumentation(30verbalassessmentsand30individualeducationalplans)andobservationsoftheeducationalprocessoffourstudents.Teacherswereincludedintheresearchsamplebasedonthesecriteria:• Theteacherhasgota minimumofBachelorDegreeinSpecialPedagogy.• TheteacherhasgotexperiencewitheducationofstudentswithsevereCPfor
minimumof2years(2yearsis,inouropinion,consideredasanadequatetimetocreatea firmrelationshipbetweenteacherandthestudentandtogeta deeperknowledgeofthepersonalityofthestudent).
• Theteacheriswillingtooffertheinterviewortogivethestudent’sdocumentationforviewing.
• Theteacherisabletoreflectonhiswork.
Thefollowingcriteriawereusedtoincludestudentstotheresearchsample:thestudentisdiagnosedwithCP,andhasgota severephysicaldisability(inabilityofindependentmovement,severelimitationinself-care)andsevereimpairmentofcommunicationabilities(verbalcommunicationonlyatthelevelofsoundsorfewwords)andsevereorprofoundintellectualdisabilityandthestudentdoesnotsufferfromdeaf-blindness.Thedatawascategorisedbyvarioussources,convertedintotextandpreparedforqualitativeanalysis.
4 Conclusions Based on Open-Axis Coding
Dataanalysiswasdoneusingopenaxialandselectivecodingbasedontheproce-duredescribedbyStrausandCorbin(1999).Usingopencodingbasiccategoriesandsubcategoriesrelatingtotheeducationalprocesswerecreatedanddividedintoseveralgroups:
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 39
• Thepurposeofeducationandeducationalneedsofthestudent.• Thefacilitatorsofinteractionbetweenteacherandstudent.• Thetoolssupportingunderstandingofthestudent.• Thespecificsofcommunicationbetweenteacherandstudent.• Thestatementsaboutthestudent’spersonality.• Proceduralandmethodologicalaspectsoftheeducationalprocess.• Thebenefitsanddifficultiesofteachers.• Withinthegroupconcerningthespecificsofcommunicationbetweentheteacher
andthestudentthefollowingcategoriesweredistinguished:• Communicationreactionsofstudents.• Interpretationofcommunicationreactionsofstudents.• Communicationsubjectsofthestudents.
Communication Reactions of StudentsCommunicationreactionsofstudentsderivedfromthelikesweredesignatedaspositivecommunicationreactionsandthosederivedfromthedislikesasnegativecommunicationreactions.Furthermore,wedividedthecommunicationreactionsaccordingtothemeansofexpressionthatwasusedintolocomotive,facial,vocal,vegetative,other,unspecifiedreactionsandreactionswitha concretecommunicationintent(onlyinthelastcategoryitispossibletoaccuratelyinterpretspecificcom-municationintentofthestudent).ThesereactionsaredescribedinFig.1.
Somecommunicationreactionssuchasagitationorvegetativesymptomsmayhaveitssourceinbothlikesanddislikeswhichcanusuallyonlyberecognisedbasedonthecontextofthesituationandothernon-verbalsignalsofthestudent,suchasfacialexpressions.Furtherexaminationisnecessaryinthesecasesbasedonthecontextofthesituation.
Whendescribingspecificvocalexpressionswerealisedanadequateterminologyhasnotbeencreated,a terminologythatwouldenablea descriptionofsubtlediffer-encesbetweenvariousvocalexpressionsofthestudents.Tostatejustoneexample,KrejčířováandLangmeier(1998)describethedifferenttypesofcryinnewborns.Thereisevidencethatmothersveryquicklylearntorecognisethedifferenttypesofcry–thecryexpressingpain,hunger,thecrythataimstocalltheattentionofanadult,etc.However,specifictermsforthesedifferenttypesofcryhavenotyetbeencreated.ThesituationisevenmoredifficultinstudentswithsevereCP.Wethinkthattherangeofvocalexpressionscouldbeevenwiderbecausethepersonalityofstudentsismorecomplexandtheyareolderthaninthecaseofnewbornsorinfants.
40 Articles JournalofExceptionalPeople,Volume1,Number4,2014
Communication Reactions: Examples:NegativeLocomotiveReactions: Motoragitation,touchingtheabdomen,forwardbending,fidg-
eting,attemptingtobeattheteacher,bangingone’shead,turningaway,pushingsomethingaway,unusualmovements,slouching,etc.
PositiveLocomotiveReactions: Rocking,tiltingthebody,wavingarms,clapping,fidgeting,turn-ingaround,flappingarms,etc.
NegativeFacialReactions: Frowning,grimacingandstiffeningoftheface.NegativeVocalReactions: Snarling,growling,whooping,whining,orbraying.PositiveVocalReacions: Humming,munching,repeatingaword,forexample“hello”,
andcrowing.VegetativeSymptoms: Changesofsweating,changesofbreathing,oftemperature,of
salivation,narrowingorwideningofpupils,etc.OtherCommunicationReactions: Thepupilbecomesmorealert,pupilissilentandcalmexpress-
ingagreementordoesnotreactwhichexpressesdisagreement.UnspecifiedCommunicationReactions:
Allreactionstowhichteachersarenotabletoascribeanypar-ticularcommunicationmeaningatthatmoment.
ReacionswithaConcreteCommunicationIntent:
Pointingatadesiredobject,makingachoicebyalookand“earrubbing”toexpressthedesiretosleep.
Fig. 1:CommunicationReactionsofStudents
Whenanalysingthedatainthiscategoryweencountereda newwayofcommunica-tionwhichwasindependentlyreportedbyseveralteachers.WecalledthistypeofcommunicationtheSightCommunication.Itmustbedistinguishedfromthemeth-odsofmakingchoicesbasedonthelookorblinkofstudentswhichiscommonlydescribedinscholarlyliterature(Bigge,Best,Heller2010,Jedlička,Škodová,2003).Duringthesightcommunicationteachersvisuallyrecogniseemotionscurrentlyex-periencedbystudentsfromthelookintheireyes.Oneoftheteachersstatedthatshecouldseeglimpsesoffearorjoyinthelookofthestudent.Weareconvincedthatthisformofcommunicationrequiresa highlevelofsensitivity,intuitionandanabilitytoconnectonthepartoftheteachers.Itremainsunclearwhetherthisisonlya one-waycommunication(fromstudenttoteacher),orthestudentreactsinsomeway(evenifonlysubconsciously)totheconnectionestablishedwiththeteacherduringtheirinteraction.
Interpretation of Communication Reactions of StudentsAnothercategoryexploresthepossibilitiesofinterpretationofcommunicationreac-tionsofstudents.Thedatacollectedinthiscategoryisratherscarce.Accordingtotheexperienceoftheteacherstheabilitytointerpretnon-verbalsignalsisenhancedthrough:
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 41
• intuitionandsensitivityoftheteacher;• goodobservationskills;• focusonpara-verbalcomponentsofstudent’svoice(intonation,emotionaltone
ofvoice,etc.);• abilitytodifferentiatebetweenmusclespasmanddeliberateresistanceofmove-
ment;• conversationswithparentsandusingtheirexperience;and• observationsofcommunicationbetweenthestudentandhisorherparents.
Theteachersemphasisedthatitisonlypossibletointerpretcommunicationexpres-sions,especiallythelocomotiveandfacialexpressions,basedongoodknowledgeofthestudent.
Communication Subjects of the StudentsInthethirdcategoryweexploredthecommunicationsubjectsofthestudents.Thesearethemostfrequentsubjects:• expressinglikesanddislikesandstatementslike“I want”or“I don’twant”or“Yes”
and“No”;• sharingexperiences;• choosinga meal;• expressingphysiologicneedslikechangingone’sposition;• describingwhatishappeningorwhatwillbehappening;• communicationaboutfamily,shopping,sports,travelora petofthestudent;• expressinga desireforinteractionora desiretosaysomething;• expressingthatthepersonshouldleaveorthatthepresenceofthepersoniswel-
come;• studentinsistsonsomething;• expressinga desiretosharefeelingsorthatsomethingistroublinghimorher;• expressinga desiretogoout,playorlistentomusic;and• a femalestudentexpressingthatshelikesa boy.
Ideas from Other Groups of Data and CategoriesFromamongothergroupsofdatathatconcernedvariousaspectsoftheeducationalprocessthesecategoriesandsubcategorieswerestimulatinginregardstocommu-nication:• InthegroupthePurpose of education and educational needs of the student
theteachersconsideredcommunicationtobeveryimportant(22statementswereaboutcommunication).Respectivesubcategoriesincludedexpressionofcom-municationalneeds,trainingforusingtheAACsystem,trainingeyecontactand
42 Articles JournalofExceptionalPeople,Volume1,Number4,2014
othercommunicationalskills,initiationofcommunication,motivationforcom-municationandsoforth.
• InthegroupFacilitators of interaction between teacher and studentweob-taineddataregardingfavouritestimuliofstudents.A separatecategorywasiden-tified,called‘Speechandstimuliconnectedwithverbalcommunicationcreateda separatecategory’(30statementswereinthiscategory).Inthesubcategoriestherewerespeechandtalkingbetweenteacherandstudent,voiceanditspara-verbalexpressions,appreciationandpraise,nurseryrhymesandwordrhythmisa-tion,readingandstory-telling.
• InthegroupProcedural and methodological aspects of the educational process subcategorycalled‘commentingasspecificeducationalstrategy’wascreated.Wewilladdresstheissueofcommentinginregardstothecommunicationprocesslaterinthepaper.
5 Conclusions Based on Axial and Selective Coding
Inthenextphaseofqualitativeanalysis,wecategorizedthesetcategoriesandsub-categoriesintofourgroups–inputdeterminants,theprocessitself,outputsandthecontextoftheeducationalprocess.12linesofspecialeducationalinterventionwereidentifiedbyobservingtherelationshipbetweenthesecategoriesacrosstheinputs,theprocessandtheoutputsofeducationandbysearchingforhypotheticallinksbetweenthem,whileoneofthelinesconcernedcommunication.Infurtheranaly-sisofthecollecteddataweselected,foreachline,themaincategoriesandcreatedmodelsoftherespectivelines.Thesemodelswerethensubjectedtoa criticalviewofcolleaguesintheworkplaceandseveralteachersfrompractice.Thereisa visualdiagramofthefinalmodelconcerningcommunication(Fig.2).
Thismodelshowscommunicationinrelationtoimportantcategoriesoftheedu-cationalprocess.Itattemptstoportraythecommunicationprocessbetweena teacheranda studentasvarioussocialactivitiesthatareinfluencedbya varietyoffactors.Weshalladdresssomeoftheaspectsandconnectionsinthismodelinthefollowingtext.
6 Interpretation and Discussion
Wheninterpretingthefindingsrelatingtothecommunicationprocesswefocusedprimarilyonfactorsthathelpfacilitatecommunicationbetweenteacherandstu-dent.Webelievethesefactorsofferinspiringconclusionsforspecialeducationaltheoryandpractice.Whenlookingatthecommunicationprocessdiagramitmustberememberedthatitisa hypotheticalmodel.Weexpectthatitsfurtherstudyandcriticalreflectionbypracticingteacherswillenableitsfurtherelaboration.Atthis
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 43
Fig.
2:C
omm
unicatio
npr
oces
s
44 Articles JournalofExceptionalPeople,Volume1,Number4,2014
timewhenthismodelhasnootheralternativeweofferitasa temporarytheoreticalconstructwithpossibleapplicationsintheeducationalprocess.Belowwewilldiscusssomeelementsinthecategories.
Communication Reactions in StudentsWheninterpretingthefindingsinFig.1weencounteredseveralfundamentalprob-lems:a moreextensivesetofdatawouldberequiredtodescribeandclassifycom-municationreactionsofstudentsaswellasmoreintensiveworkonvideorecordings,whilethesewouldneedtocapturemoreconcretecommunicationreactions.Asal-readystated,forthedescriptionofsubtledifferencesbetweenvocalreactionsofthestudentsitwouldbeusefultocreatespecificterminology.Inthepreviouschapterwedescribedalsosomespecificwaysofcommunicationbetweenteacherandstudent,suchassightcommunication.Thistypeofcommunicationleadstoa numberofotherquestionsregardingmanyspecificaspectsoftheprocessofsynchronyininteractionbetweenteacherandstudent,theprocessofcreatinga connectionwiththestudentandthequestionofphysiologicandmentalparametersbasedonwhichteachersinterprettheinnermentalstateofthestudent.Furtherstudieswillnodoubtoffermoreextensivedatathanthecurrentfewcasestudies.Ifthesecollecteddatafindconfirmationwithina largersampleitwouldbebeneficialtodesigna neuropsycho-logicalresearchusingimagingtechniquesinthisarea.
Observation of Interactions between Student and Primary Care-GiverBasedonthestatementsofteachersitseemsthateachstudententerstheeduca-tionalprocesswithpre-formedskillsforatleastsomeformofbasiccommunication.Severalteachersstatedthatinthebeginningitisimportanttoobservetheinterac-tionbetweentheprimarycare-giver—mostoftenthemother—andherchild,sinceeverymotherisabletointerpretcertaincommunicationsignalsofherchildandrespondadequately,althoughona subconsciouslevel.Thepossibilityofobservingtheinteractionsbetweenthestudentandhisorherprimarycare-giveris,fromourexperience,notgivensufficientattentioninspecialeducationpractice.Webelievethatobservationoftheseinteractionscouldbea commonpartofthefirstspecialeducationdiagnosticsbecauseofitsvalueinstudentswithsevereCP.
Synchrony in Interactions between Teacher and StudentResearchconcerningthesynchronybetweencommunicationpartnersduringtheirinteractionusestermssuchas‘rhythmic’or‘interactivedance’todescribesuchin-teractions(Condon,inMoreno,2005).Itisapparentthataspectsofrhythmandtempoplayanimportantroleincommunication.CommunicationofstudentswithsevereCPoftenhasa veryslowtempoanda specificrhythm.Theteachermustalso
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 45
leaveenoughspaceforthereactionofthestudent.Thereactivetimeofstudentsisextremelylongcomparedtocommontempoininteractionsandthisrequiresgreatpatienceonthepartoftheteacher.
Itseemsthatitistheteacher’sadjustmenttotheslowtempoandthesynchro-nisationwithnon-verbalreactionsofthestudentisa veryimportantabilityfortherealisationofeffectivecommunication.Thereisnodoubtthatthesynchronyoccursonmultiplelevelssimultaneously:physiological,energylevel,motor,emotional,etc.Furtherresearchinthisareacouldfocusondeterminingwhethertheconsciousfocusofteachersandintentionalsynchronisationwiththetempoandrhythmofmotormanifestationsofthestudentcanimprovesynchronyininteraction,increasethelevelofmutualharmonyandmakethecommunicationprocessmoreefficient.
Communication Subjects and the Students’ Psychosocial NeedsTheconclusionsregardingthecommunicationalneedsofstudentswillalsohavetobesupportedbyfurtherresearch.Analysisofcommunicationsubjectsofthestudentsandobservationsofthecommunicationprocessshowsthatcommunicationneedsofthestudentsareoftencloselyrelatedtothesaturationoftheirphysical,mentalandsocialneeds.Also,analysisofthefacilitatorsofsocialinteractionbetweenteacherandstudentsupportsthatthepresenceoftheteacherisa sufficientmotivationforstudentstomakeattemptsforinitiationofcommunicationorrespondtothestimulicomingfromtheteacher,especiallywhentheteacherappreciatesthestudentorshowpositiveattitudetowardshimorher.Theteachers’statementssuggestthatstudentswithsevereCParehighlylikelytodevelopmentalorsocialdeprivation.Ontheotherhand,however,thefrustrationofthesestudentscausedbyinsufficientsaturationofpsychosocialneedsmaybeusedina positiveway.Intheeducationalprocessthesemaybecomea significantmotivatingfactorfortherealisationofcommunicationandinteraction.Thestudents’achievementsinthefieldofcommunicationwerehighestinthoseeducationalsituationsinthisresearchthatwerebasedona long-term,safeandemotionallywarmrelationshipbetweentheteacherandthestudent.
Using Enjoyable StimuliForinitiationofcommunicationteachersmostlyusethosestimuliandsituationsthatthestudentconsidersenjoyable.Thesestimuliareoftenappliedwithinaestheticandstimulatingprocessesforexampleaspartofmusiceducation,basalstimulation,inMulti-SensoryRoom,etc.However,theanalysisofothercommunicationprocessesshowsthatmanyactivitiesthatthestudentconsidersextremelyunpleasantalsoiniti-ate communicational reactions as is the case in desensitisation to unpleasant stimuli (noise,unknownpersons).Thesestimulimayinitiatecommunicationreactionsveryfast.Theyareconnectedwithstress,though,andfrequentoccurrencecontainsthe
46 Articles JournalofExceptionalPeople,Volume1,Number4,2014
riskofnegativelyinfluencingthedevelopmentofrelationshipbetweenteacherandstudent.
Inner State of Communication Partners and Teacher’s AuthenticitySeveralimportantrecommendationsforeffectivecommunicationemergedfromtheanalysisofaninnerstateofbothteacherandstudent.Bothcommunicationpartnersaresignificantlyaffectedbyclassroomclimate.Teacherswhoworkwithstudentswithseveremultipledisabilitiesoftenreportthattheirbasicstrategyineducationistocreatea positiveclimateinthegroup(Kantor,2013).Positiveemotionalclimateiscontinuouslymaintainedandintentionallyencouragedwheneverdifficultiesoccur.AccordingtoAllodi(2008)positiveemotionalexperienceisthemostimportantrequirementforteachingstudentswithseveremultipledisabilities.Someteachersinourstudyreportedthattheyseekthosesituationsforinteractionwithstudentsinwhichtheteachersfeelcomfortable.Thoseareforexamplesituationsduringmusictherapy,basalstimulation,Snoezelenandothertherapeuticandstimulatingactivities.
Animportantroleofcommunicationbetweenteacherandstudentissharingpositiveemotionalcontent.Thiscanonlyoccurona non-verballevel,withouttheneedforverbalexpressionofthecontent.Teachersoftenexpressedininterviewsthatinthistypeofcommunicationwithstudentstheyfeelcomfortable.However,therearecertainobstaclesfortheteacherforachievingthenecessaryinnerstateforthistypeofinteraction.Teachersbelievethatwhentheyletthemselvesbestressedbytheirownproblemstheyarenotabletofullyparticipateinthecommunicationprocessandtheiremotionalstatehasa negativeinfluence.A similarsituationoccurswhentheteacherisunabletoacceptthestudent,findshimorherrepulsiveorisnotinterestedinhimorher.
Duringthecourseoftheresearch,however,a differentperspectiveonthesubjectofinnerstateofcommunicationpartnersstartedtoemergefromtheexperienceoftheteachers.Onerespondentmentioneda situationwherea femalestudentexhib-itedself-inflictingbehaviourwhenevertheteachertriedtomaskherowndepressed,anxiousortroubledemotionalstatebysmiling.Theconflictbetweenthenon-verbalcommunicationoftheteacherandhisorheremotionalstatecancauseanxietyinstudentscausedbytheambiguityofnon-verbalsignalsofthecommunicationpart-nerandtheinabilitytointerpretthepartner’semotions.Althoughthisisanisolatedexperience,inthecourseoftheresearchmanyteachersmentionedgreatemotionalsensitivityofthestudentstotheemotionsoftheircommunicationpartners.There-fore,webelievethatincommunicationwithstudentswithsevereCPtheauthenticityoftheteacherisofgreatimportance.Thecognitivedeficitsofthestudentsdo notjustifytheassumptionthatitisethicaltolietostudents.Onthecontrary,empiricalexperiencehasshownthatauthenticbehaviourisa goodstartforbuildinga rela-
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 47
tionshipbasedontrustandmutualrespect.Explanationofone’semotionalstate,includingsituationswheretheteacherdoesnotfeelgood,mayhelpmanystudentstocreateclearandmeaningfulcommunicationsituations.
Communication and Shape – Counter Shape TheoryWetriedtoapplyshape–countershapetheorybyanAmericanpsychotherapistA. Pessotothecommunicationsituations(inPesso,Boyden-Pesso,Vrtbovská,2009).Pessolikenscommunicationalintentsandreactionstothe interaction of shape and counter shape.Shapeandcountershapeinsocialinteractionmayfittogethertoa certaindegreejustastheisshownonthediagrambelow(A andB).
A B
Fig. 3:Shapeandcountershapeininteractivesituations
Foranalysisoftheinteractionitisimportantwhetheritispossibletointerpretthesocialinteractionasa wholeintermsofrespectivecommunicationpartners.TypeA situationrepresentsa situationwhentheshapeandcountershapemeetduringtheinteractionandtypeBisa situationwhentheseshapesdo notmeet.Thestudentandtheteachermayinterpretthesocialinteractionthesameway,eitherasA orasBtype.ParadoxicalsituationsmayoccurwhenteacherconsiderstheinteractiontobeoftypeA whilethestudentastypeBorviceversa.Inextremecasestheteachermaybecertainthattheinteractionhada positiveeffectonthestudentwhilethestudentmayfinditunpleasantoreventraumatic.Ontheotherhandwemayalsotalkaboutsituationswhentheinteractionisbeneficialtothestudentbuttheteacherinterpretsitintheoppositewayforexamplebecauseofhisorherowninsecurity.Fromthispointofview,therearemanyethicallyquestionablethemesincommunicationbetweenteacherandstudentwithsevereCP.
Inthebeginningofthisarticlewementionedtheconsiderabledifficultyininter-pretingcommunicationsituationsinstudentswithsevereCP.Inhealthcareduetotheriskthatthesesituationscanhaveontherelationshipbetweencommunicationpartnersweoftenmeetwithrequirementsforsupervisionoftheentireprocess.IntheCzecheducationalsystemsupervisionisratherrarebutinmanycasesthereisa needforexternalsupportoftheteachers.Weconsideritessentialtograduallyincreaseteachers’awarenessofthepotentialrisksofinteractionsituationsandencouragethem
48 Articles JournalofExceptionalPeople,Volume1,Number4,2014
toseekavailableformsofprofessionalsupport.Itisnecessarytopromotethistopicwithinanundergraduatetrainingofspecialeducationpedagogueswithinprogramsofhighereducation.Itisalsopossibletoseekalternativeformsofsupportespeciallyforbeginningteachers.Thereisthepossibilityforexampleofsupportfrommoreexperiencedcolleagues,counsellingcentres,supportgroups,etc.
Teacher as a Compensating ElementDuringthecourseoftheresearchwehaverepeatedlyencounteredtheimportanceofcommunicationpartnerofthestudent,inthiscasetheteacher,forthecommunica-tionassuch.Wehaveobservedonthevideorecordingsthattheteachercompensatesforthecommunicationaldeficitsonthepartofthestudent,byhisorherbehaviour,especiallybycontinuouscommentingoftheongoingactivity.Inthosesituationsteachersoftenexpressedwhattheythoughtthestudentmaybeexperiencing,whathewantsandwhathedoesn’twant.
Basedonananalysisofinterviewsandobservationsoftheeducationalprocesswefoundthatcommentingcanperformthesefunctions:commentinghelpsstudentbeorientedandpromoteshisorhersenseofsecurity,helpsputsituationsintocontextoftime,replaceverbalactivityofthestudent(teachercommentsfromthepositionofthestudent),stimulatecognitiveprocesses(bynamingobjects,activities,events,etc.),haspreventivefunction(e.g.preparesthestudentforanupcomingstimulus),maintainsattentionofthestudentandtheconnectionestablishedininteraction.
Inanalysingthecommunicationprocessitisofmostimportancetoobservethespecificbehaviouroftheteacherwhoistryingtocreatesuchcommunicationcoun-tershapesthatthestudentcanreacttodespitehisorherlimitationsinfunctionalabilities.Thewholeeffectofthecommunicationprocessisdependentontheabilitytocreatethesecountershapes.Itisalsoworthnotingthatintheabsenceofcom-municationreactionsofthestudenttheteachercreatesthoseinteractiveshapesthatfitintothealreadycreatedcountershapes.Eachcommunicationsituationleadstoa meaningfulending.Ifthestudentisnotabletorespondtocommunicationoffersatthetimetheteacherverballyornon-verballycommunicatesforthestudentandcompletestheinteractiveshape.
Evaluation of the Outcomes of the Communication ProcessInthefieldofspecialeducationaltheorywedo notasyethavea sufficientnumberofrelevantconclusionsforthecreationofmethodologythatwouldenablea comprehen-siveevaluationofoutcomesofcommunicationprocessesbetweenteacherandstudentwithsevereCP.Wecangiveonlypartialexperiencethatwasgainedinthisfield.
Theprocessesofinteractionandcommunicationwereduringthesynthesisoftheobtaineddataplacedinthecontextofotherprocessesofintervention.Establishing
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 49
interactionwiththestudentisa basicprocessfromwhichalltheprocessesofinter-ventionderive.Duringtheanalysisofthecasestudieswefoundthatthedevelopmentofinteractivesituationshasledtoanincreaseinopportunitiesforcommunicationinseveralstudents,namelyfromthelevelofspontaneousexpressionoflikesanddislikestothelevelofexpressingconcretecommunicationintentions,forexampleintheformof‘yes’and‘no’.Thisconstitutesa significantchangeintheeducationalprocessespeciallysincecommunicationwitha concreteintentionmayenhancesomecognitiveprocessesofthestudents.Thestudentmaythenachievehigherfunctionallevelintheareaofmanyotherrelevantactivities.Wemay,therefore,emphasisea di-rectlineofprocessesthatfacilitatecommunication,interactivesituations,variouslevelsofcommunicationandthata wideningrangeofopportunitiesforeducationbyfacilitationofotherprocessesofintervention.
Themodelsofferedhereregardingcommunicationcannot,ofcourse,takeintoac-counttheunlimitedrangeofvariouscommunicationsituationsthatmayoccurbe-tweenteacherandstudent.Wehavepointedoutthedifferencebetweensituationsinwhichteachersenterintothecommunicationprocesswitha concreteaimandsituationswheretheyletthemselvesbeledbythestudentandinwhichtheteachers’behaviourismuchlesscontrolling.Eachofthesetypesofcommunicationsituationsmayassumemanydifferentforms.
TheriskinstudyingcommunicationinstudentswithsevereCPisthereductionofthecommunicationprocesstoseveralobservedfactsthatareemphasisedattheexpenseofother.Communicationisa complexsocialactivitythatrequiresestab-lishmentofa goodqualityrelationshipwiththeteacheronthepartofthestudentwithsevereCP.Otherprocessesofinterventionconstituteanimportantextensionthepossibilitiesofwhichunfoldwithtimeandinconnectionwiththequalityofcommunication.
7 Summary
Inthispaper,weexaminedthecommunicationprocessesinstudentswithsevereCP.Weintroducedbasicterminologyandconclusionsofa qualitativestudybasedonopen-axis,axialandselectivecoding.Atthelevelofopen-axiscodingbasiccat-egoriesweresetthatledtoanoverviewofcommunicationreactionsofthestudents,thecommunicationsubjectsandsomefactorsthatenhanceinterpretationofthecommunicationprocesses.Atthelevelofaxialcodingwesearchedforhypotheticalconnectionsfora betterdescriptionofthecommunicationprocessesandwehavechosenthemostessentialtovisualiseina diagram.Inthefollowingdiscussionweofferedsomethoughtsonvariousaspectsofthecreatedcommunicationmodelandgavesuggestionsforspecialeducationpracticeandfurtherresearch.
50 Articles JournalofExceptionalPeople,Volume1,Number4,2014
Literature
[1]ALLODI,M.2008.Goalsandvaluesinschool:a modeldeveloperfordescribing,evaluatingandchangingthesocialclimateoflearningenvironments.InSocial Psychology of Education.NewYork:Springer.Roč.13,s.207–235.ISSN1381-2890.
[2]BIGGE,J.–BEST,J.,S.–HELLER,K.2010.W.Teaching Individuals with Physical or Multiple Disabilities.3.vyd.NewYork:MacmillanPublishingCopany.541s.ISBN0-675-21017-8.
[3] BURKHART,L.2013.What Is Alternative and Augmentative Communication?On-line.Toronto:InternationalSocietyforAlternativeandAugmentativeAssociation.Citováno20.3.2013.Do-stupnéna:https://www.isaac-online.org/english/what-is-aac/
[4]JELÍNKOVÁ,P. 2013.Alternativní komunikace z pohledu klienta s těžkým kombinovaným posti-žením a jeho okolí.Olomouc.Diplomovápráce(Mgr.).UPv Olomouci,PdF.
[5]KANTOR,J.2013.Výstupy edukačního procesu v oblasti sociálních kompetencí žáků s dětskou moz-kovou obrnou.Olomouc,disertačnípráce(Ph.D.).UniverzitaPalackéhov Olomouci.Pedagogickáfakulta,333s.
[6]KNAPCOVÁ,M.2009.Výměnný obrázkový komunikační systém – VOKS.1.vyd.Praha:IPPPČR. ISBN978-80-86856-14-3. [7]KREJČÍŘOVÁ,D.;LANGMEIER,J.1998.Vývojová psychologie.3.vyd.Praha:Grada.344s. ISBN80-7169-195-X. [8]MAJEROVÁ,R.2010.Maturačníteoriea suspektnějazykováporuchavývojováanartrie.In:Studie
z aplikované lingvistiky.Praha:UK,č.2.180s.ISSN1804-3240. [9]MORENO,J.2005.Rozehrát svou vnitřní hudbu.1.vyd.Praha:Portál.128s.ISBN80-7178-980-1.[10]PESSO,A.–PESSO-BOYDEN,D.–VRTBOVSKÁ,D.2009.Úvod do Pesso Boyden System Psy-
chomotor. 1. vyd.Praha:Scan.210s.ISBN978-80-866-2015-2.[11]PHIPPS,S.–ROBERTS,P. 2012.PredictingtheEffectsofCerebralPalsySeverityonSelf-Care,
Mobility,andSocialFunction.InThe American Journal of Occupational Therapy.Bethesda: Ameri-canOccupationalTherapyAssociation.Roč.66,č.4,červenec–srpen,s.422–429.ISSN0272-9490.
[12] RICHMAN,S.2008.Aplikovaná behaviorální analýza. 1.vyd.Praha:Grada.122s. 978-80-736-7424-3.[13] STRAUSS,A.–CORBINOVÁ,J.1999.Základy kvalitativního výzkumu: postupy a techniky metody
zakotvené teorie.1.vyd.Boskovice:Albert.196s.ISBN80-85834-60-X.[14] THOROVÁ,K.2006.Poruchy autistického spektra.1. vyd.Praha:Portál,453s. ISBN80-7367-091-7.[15]VYBÍRAL,Z.–ROUBAL,J.2010.Současná psychoterapie.1.vyd.Praha:Portál.743s. ISBN978-80-736-7682-7.
(reviewedtwice)
Mgr. JiříKantor,Ph.D. Mgr. EvaUrbanovská,Ph.D.InstituteofSpecialEducationStudies InstituteofSpecialEducationStudiesFacultyofEducation FacultyofEducationPalackyUniversity PalackyUniversityŽižkovonám.5 Žižkovonám.5Olomouc Olomouc77400,CzechRepublic 77400,CzechRepublice-mail:[email protected] e-mail:[email protected]
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 51
Basic cognitive strategies and the reading process in pupils with specific learning disabilities
(overview essay)
Miroslava Bartoňová
Abstract: The chapter presents information on learning strategies in pupils at primary and secondary schools. It specifies some of the approaches to reading acquisition in pu-pils with dyslexia. This issue is perceived from the cognitive and metacognitive strategies acquisition perspective. We also focus on the definition of basic skills such as process of reading comprehension, phonological information processing, and a flair for language acquisition. The chapter contains analysis of some foreign approaches and programs in the acquisition of basic strategies during learning process as well as specific examples of good practice.
Key words: specific learning disabilities (difficulties), pupils with dyslexia, the process of reading, comprehension, phonology, a flair for language, education, metacognition, strategies
1 Theoretical Basis
Specificlearningdisabilities(alsospecificlearningdifficulties,learningdisabilities)affecta significantnumberofchildrenandadults.Itisa heterogeneousgroupofin-dividuals.Specificlearningdisabilitiesdistinctfromglobalintellectualdeficiencyandchildrenhavesignificantlyworseresultsinlearningandwritingastheirclassmatesofthesameageandlevelofeducation(Häfele,H.,Häfele,H.2009).
Expertsindicatethatlearningdisabilitiesaffect4–8%ofchildrenpopulation,whereasinternationalcomparisonpresentincidenceofspecificlearningdisabilities(SLD)around6%,whilethepercentageofthepopulationdecreaseswithincreasingage.Manifestationsofthedisordercanaffectqualityoflifeofanindividual,extentdependsonhis/herpersonality,butalsotheenvironmentinwhichhe/shelives(Hal-
52 Articles JournalofExceptionalPeople,Volume1,Number4,2014
lowell,E.M.,RateyJ.J.2007;ICD-10:F81.3,cf.Hollenweger,J.InLichtsteinerMül-ler, M.2011,p. 41etseq.).
1.1 Factors affecting approaches to teaching pupils with dyslexia
At the beginning, I was looking forward to going to school, but later, when I moved to another city, I felt unaccepted by other children. It was quite difficult for me and I felt threatened at times. I was diagnosed with dyslexia in the second grade of primary school. I was taken into consideration in the lessons during the first grade. It was my father who noticed that I did not read accurately – he noticed that when he accidentally turned two pages in the reader, I continued reading what I thought might be on the page. I was reading in the context, but I did not realize that two pages were accidentally turned at once. I often hesitated to engage in discussion not to embarrass myself. School is difficult for me, it is challenging to take notes and follow a lecture, I often have to read the materials several times. I intensively prepare for the lectures and read too much, but I do not feel good if I am not prepared well. I think my experience and maturity help me in classes, and I feel that I can present a good point of view at some issues.
Pupilswithdyslexiacanbeveryvulnerablewhentheyhavetoacceptchange,suchasthestartofcompulsoryeducation.Iftheschoolisinformedofpossibledifficultiesandkeepstryingtooffersupport,thischangemaynotnegativelyaffectpersonality.Severalfactorsmustbeconsideredindeterminingthemostappropriateapproachforpupilswithdyslexia,whichinclude:• Context–includesthefollowing:typeofschool,classsize,teacher(employees)
trainingprograms,pupil’sageanda currentdevelopmentphase• Assessment–providesinformationontheseriousnessofpupil’sdifficulties.This
profiletypeisimportanttoobtaininitialinformationinordertodevelopa suit-ableinterventionprocedure
• Curriculum–Whatrequirementsandexpectationsconcerningthepupildo wehave?Towhatextentisthecurriculumaccessibleanddifferentiated?
• Thepupil–Whatishis/hermotivation?Whatdo weknowabouthis/herlearningstyle?Howcanweusethisinformationtocreatea program?
Educationalstrategiesmustbeindividualizedforeachpupil.Earlyinterventional-lowspupiltoachieveoptimallevelofdevelopmentineducational,personal,socialandprofessionalareas.
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 53
TeacherInstructionalBehaviors
TeacherAffectiveBehaviors • cognitivePress • Reinfocers
TimeinReading • Silent • Oral • InderectPre-test Post-test
Overlap
Pacingsignificanttime-drivenrelationships
significantrelationships
possiblerelationshipsnotsignificant
Fig. 1:A modelforexplainingreadingachievement.(Leinzhardta,Zigmonda,a Cooley1981,p. 352).Copyright1981AmericanEducatinalResearchAssociation.
Thefigurerepresentsthestructureofmodelbasedonresearchonclassroomactivitiesthataffectpupils’attitudestowardlearning.Theseareactivitiesthatsimultaneouslysignificantlyaffectdevelopmentofreadingskills.EnglishresearchersfocusedonresearchonclassroomactivitiesinspecialclassesforpupilswithSLD;theyinvesti-gatedrelativeeffectivenessofdifferentactivitiesonimprovingreadingperformanceofpupils.Theyassumedthatlearningisbasedonactivitiesthatpupilsperformintheclassroom,onthecurriculum,butalsoontheteacher’sbehaviourthatdirectlyaffectspupils’activitiesandonlyindirectlypupils’learning.Theyneitherdefinedinstruc-tionsforreading,norreadingmethods.However,readingactivitiesweredividedintothreegroups.Thosethataredirectlyassociatedwithreading(forexamplethosethatbringthepupiltowriting),thosethatindirectlysupportsomeaspectsofreading,butitisnotreadingitself(e.g.listeningtoteacherorstorytelling),thosethataffecttheacquisitionofreading,butbelongintoa categorywherefocusisnotdirectlyon
54 Articles JournalofExceptionalPeople,Volume1,Number4,2014
readingitself(forexampleworkingonmathskills,drawing,cuttingandgluing).Inthiswaytheyhavecreateda studythatoffersaccuratedescriptiveinformationabouttheinstructionsforreadinginspecialclasses.
Furthertheyinvestigatedwhetheritispossibletoadoptspecificcausalrelation-shipsbetweenthespecificprocessandoutcomevariables(Fig.1).Theyassumedthatthewayteachersstructurelearningenvironmentcouldmakea differenceinthewaypupilsworkintheeducationalenvironment(theclass)andaffecttheirlevelofproficiencyinreading,whichtheyreachattheendoftheacademicyear.Fig.1showsthecausalmodelofassumptionsaboutthewaytheclassroomvariablesin-teract.Solidblacklinesindicatea significantrelationship,inwhichtheyassumedcausallink,dottedlinesindicaterelationshipwhichwasexpectedtobesignificantbutitwasnot.ThemaingoalofFig.1istoshowthatthefinaltestdependsonthepupil’sbehaviourandcontentofinstruction.Itwasassumedthatpupils’behaviourwillbeinfluencedbytheteacher’sbehaviour.Theresearchwasconductedfortwoyearsin11specialclassesforpupilswithspecificlearningdisabilitieswithmorethan100 pupilsandtheirteachers.Dataconfirmedexpectationsandspecifiedwhathappensintheclassroomandhoweachpupilhasexperiencedandrespondedtothelearningenvironment.Pupilsinspecialclassesspentanaverageofonly26minutesfromthe362minuteschooldaybyreadingaloudorsilently,andonaverageshowedlittleprogressintheprocessofreadingskillsacquisition.However,timespentoneachtaskbypupilswithdyslexiainthedirectorindirectformwashighlypredictivefortheirreadingskillsdevelopment(Swanson,H.L.,HarrisK.R.,Graham,S.2003).
1.2 Reading skills development in pupils with dyslexia
Theabilitytoreadandwriteisoneofthemostdemandingperformancesthathumanbrainhastoprocess.Well-establishededucationsystemsforpupilswithdyslexiafavorphonologicalskillsintheirinterventionprogrammesforteachingreadingandwrit-ingskills;theyareconsideredtheessenceofeffectiveteaching.Thenextstepisthentheregularapplicationofinterventionprogrammesthataredesignedtoensurepupil’sprogressandtoconsolidatelearning.TheissueofmetacognitivestrategiesisstillbeingexaminedintheCzecheducationsystem.Recently,therehasbeena tendencytogripeducationmethodologicallyandtoimprovetheprocessofteachingreadingwithcomprehension.Thenumberofpapersaddressingearlyinterventionforpupilswithdyslexiaisincreasing.Theseeffortsaretoa significantextentinfluencedbytheresultsofinternationalmeasurementsPIRLSandPISA(2011).Specializedpublica-tionspresenta numberofviewsonwhatconstitutesanessentialskillforaccurateandfluentreading.Thebasicfactorsinclude:
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 55
• verbalreadiness(suchasrecognitionofletters,spelling,syllabification,phonemicawareness,analogousstrategiesandlinkinggraphemeandphoneme),
• wordsrecognition(suchasa wordclassrecognitionandvisualmemoryusage).
Theexpertspresentfiveprocessesthatareimportantforthedevelopmentofreadingskills.Theseprocessesincludephonology, syntax, working memory, semantics and spelling.Studiesfocusedontheprocessofreadingagreethatthedeficitinreadingcomprehensionisusedasa benchmarkforproblemsinreading;theyarenotad-dressedtowardsthecognitivedeficienciesthathighlightthedifficultiesinreadingassociatedphonology.
Phonological processing of speechisconsideredtobeoneofthemostcom-moncausesofdyslexicdifficultiesinAmericanliterature(cf.Bartoňová,M.2012,Pokorná,V.2010).Phonologicalprocessesaffectdifferentskills,butinthecontextofthedevelopmentofreadingskillsitismostsignificantassociationofsoundwitha letter(forexample,understandingtherulesofthetransitionbetweengrapheme).Thisskillisthebasisfordecodingwrittentextsandalthoughotherwayscanbeusedtofindoutthemeaningofthewrittentexts,phonologicalwayisclearlythemostimportantandcrucialoftheminearlydevelopmentofreadingskills.
M.Mikulajová(2009)aswellasmanyotherexpertsemphasizesthespeechsoundofthechild’sspeech–phonologicalawarenessisperceivedasanimportantfactorforfurtherlanguagedevelopment.Forexample,ithelpsthechildtoorientateinlanguagegrammarthatisnecessaryfortheunderstandingofwrittenandspokenlanguage;anditisa prerequisiteformasteringthemechanismofreadingandwriting.Phonologicalawarenessissuperiortoconceptsthatincludeawarenessanduseoflanguage,butisalsocrucialforunderstandingthescript.Capabilitiessuchasanalysis,synthesisorphoneme-graphemelinkingarenecessaryforreadingandareverylowinmanypupilswithdyslexia.Goodlevelofphonologicalskillsisa prerequisitefortherecognitionofsinglewords.Itrequiresa complexphoneticskills,automatization,andalsoa certainlevelofvisualskills(Mather,N.,Wendling,B.J.2011;Klicpera,Ch.,Schabman,A.,Gasteiger-Klicpera,B.2010).Inordertoimprovethepupil’sskillstoidentifyindi-vidualwordscorrectlyandalsospellingskills,itisessentialtofocustheinterventionsonthedevelopmentofphonologicalskillsandphoneme-graphemelinking.
Working memoryreferstostorageofinformationinshort-termmemoryduringprocessingofincominginformationandfindingconnectionsinlong-termmemory.Inreading,workingmemorymeansdecodingandrecognizingwordsorphrasesduringthememorizingofwhatisbeingread.Workingmemorycanalsobecrucialforreadingsinglewords,especiallyatthebeginningoftheskillsacquisitionofread-ingwords,becausethetransitionrulesbetweengraphemesandphonemesforeachsegmentofspeechmustbekeptinmindwhileremainingsegmentsofwordsareprocessed.Longerwords,intermsofnumberofsyllableshavegreaterdemandson
56 Articles JournalofExceptionalPeople,Volume1,Number4,2014
workingmemory.Moreover,thecomplexityofthespecificruleshavetheeffectonthedifficultyrecognizingtheword,sincethenumberofalternativesandcombinationofa graphemeandphonemewiththepronunciationcanaffecttheeaseordifficultyinreadingthespecificwords.Iftherearemorewaystosaytheword,readingslowsdownandwillnotbeaccurateuntilthechildhasmastereda singleitem.
Semanticprocessinginvolvesunderstanding the meaning of words.Intheory,thewordmeaningisencodedintoa semanticnetworkisalsoaccessedfromthere.Semanticprocessingisimportantforobtainingmeaningofthewordinthecontextofreading.Oneoftheproblematicareasinthecontextofreadingiscomprehension.Itisnecessarytouseandspecifyprocedurestomitigatetheinabilityofcompre-hensionalsointhisarea.First,itisnecessarytofocusonbuildingvocabularyandmotivatestudentstousewordsoutsidetheclassroom.Inaddition,pupilsshouldlearntolinksentencesintomorecoherentutterances.Themaindifficultyinunder-standingandcomprehensionofthetextforpupilswithdyslexiaistheinabilitytoabstractmeaningofthetext.Itisa complexprocessthatrequiresunderstandingoflanguage.Theinabilitytodecodewordsisthesubsequentdifficultyforpupilswithdyslexia.Theskilltodecodeorproperlyrecognizesinglewordsisconnectedwiththereadingcomprehensionskill(Fletcher,J.M.,ReidLyon,G.,Fuchs,L.S.2006).Syntaxawareness,alsocalleda flair for language,referstotheabilitytounderstandthelanguagesyntax.Thisabilityalsoappearstobecrucialforthecontinuityandef-ficiencyofreadingandrequiresanticipation.Syntacticfactorscanaffectdifficultytoreadsinglewords,suchasfunctionwords,prepositionsandauxiliaryverbsthataredifficulttoincludeinthesemanticnetwork.Wecanobservethewayreadingprocessisacquiredwiththebeginners.Alsowecanobservehowtheyprocessinformationaboutthewordsthataretrainedthroughreading,howtheycombinethesewordsinsentences.Thisleadsustoa thoughtthattheabilitytohandlethesyntaxmaybeanimportantaspectoflearningwords.
1.3 Choosing strategies in teaching pupils with dyslexia
Justaseachpupilisunique,alsoteachersareawareoftheirneedtoknowa widerepertoireofteachingstrategiesfromwhichtochooseandeditandmodifythemostappropriateones.Teacher’sknowledgeofpupils’learningstylescanhelppupilstousestrategiesthatarebasedontheirstrengthsandallowthemtohandlethelearningprocessatthesametime.Theteachercanobservethewaypupilslearnandinterviewthemaboutwhatsuitsthembest.
Itisimportantfortheteacheratprimaryandsecondaryschoolstochooseap-propriateinterventionandstrategies.Thesestrategiesshouldaimtoenhancethedevelopmentofneuralfunctions,helptotheretrievalofacademicskillsandpartial
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 57
functions.Iftheinterventioniscorrectlyexplained,itisbetteracceptedbythepupilwithdyslexia.Thewaytohelppupilswithplentyofeducationalcontentistoorganizeinformation,putthemintounitsandintocontext.Forexample:a pupilcanremem-bervariousareasofknowledgebyheadingssuchaschange,relationship,society.Thissortofmentalconceptcanbesuccessful,andthepupilcanrecalla lotofinformation.Draftsalsohelppupilsgathermoreinformation,organizeandunderstandthem.
1.4 Cognitive strategies for pupils with SLD
Cognitivestrategiesbelongtothestrategiesthatpupilsusedeliberatelytoinfluencetheirlearningandcognition.Metacognitivestrategiesareunderstoodtobe“human ability to plan, monitor, evaluate procedures, which he/she uses himself/herself during learning and recognition. It is a conscious activity, which leads the person to knowledge about the way of progressing when discovering the world” (Průcha,J.,Walterová,E.,Mareš,J.2001,p. 122).Cognitivestrategiesresearchobjectivesinindividualswithspecificlearningdisabilities(SLD)aretoconstructandvalidatestrategiesthathelpwithlearningandintroducethemtopupils.Expertshighlighttheimportanceofin-formingpupilsandfamiliarizethemwithstrategiesthatcanbelearned.Theypointouttothelinkbetweenusedstrategiesandsupportforlearning(Swanson,H.L.,Har-ris,K.R.,Graham.S.2003).Theabilitytomanageplanning,monitoringandevalu-ationofusedstrategiesarea partofmanagingthestrategies.Pupilsshouldacquiretheseelementsbecausetheyareimportantforthesubsequentlearning.Theevalua-tionofparticularstrategiesisneededespeciallybecausewecanobservewhetheritisusedbythepupilineducation,andespeciallyifhe/shecanlinkthelearntstrategywithregularlearning.
StudiesfocusedontheuseofstrategiesinteachingpupilswithSLDinbasiceduca-tionarestilldeveloping.Researchersusuallyfocusontheeffectivenessofsomecom-monelementsorstrategiessuchasstrengtheningandsettingthegoals,instructionsuchas:copingwithanxiety,self-regulationandself-assessmentoflearning,accurateorclearinstructioninmathematics,theuseofmnemonics.Strategiesusingmne-monicsformasteringlanguageskillsareconsideredveryeffective(Swanson, H. L.,Harris,K.R.,Graham.S.2003).
Pupilswithdyslexiahavedifficultyincognitiveandmetacognitivelearningstrate-giesacquisition;someneedconcretenessandstructuretobuildupa sufficientreper-toireofstrategiesinordertogetmostintheacquisitionoflearning.Learningofthepupilusingoneofseveralcognitiveandmetacognitivestrategiescannotinanycasechangea pupilintoa strategicpupil,whoconsistentlyandwillinglymakeseffortstolearn.Italsodocumentedinsomeresearchstudies.Theminimumconditionformak-inga pupilwithSLDexperiencedandusingthestrategiesistograduallyincorporate
58 Articles JournalofExceptionalPeople,Volume1,Number4,2014
themintothewholecurriculum.Successdependsmainlyonthemass,school-wideuseoflearningstrategiesunderthegreatsupportofteachers(Swanson,H.L.,Har-ris, K.R.,Graham.S.2003;Bartoňová,M.,InBartoňová,M.,Vítková,M.2007).
V.Pokorná(2012,p111)seesa strategyasa mentalactivitythatcanbevalidated;ifwedon’tfindituseful,wecanthinkaboutotherstrategies.Thestrategieshelpustohandlea particulartaskfaster,safelyandwithlessriskoferror.Individualswithspecificlearningdisabilitiesusedifferentwaysforprocessinginformationthanintactpupils.Theyoftenrepeatthesamestrategythattheyhaveadoptedearlier;theyarenotveryflexible.
2 The consequences of specific learning disabilities in adulthood – qualitative research
TheaimofV.Kacelova’sresearchproject(2011)supervisedbyM.Bartoňováwastodeterminetheeffectsofspecificlearningdisabilitiesinindividualsinadulthoodandfocusontheperceptionoftheconsequencesofspecificlearningdisabilitiesthrough-outbasiceducationtoadulthood.Oneoftheresearchquestionswasthefollowingquestion:How much influence do the consequences of specific learning disabilities have in the life of an adult with dyslexia?A numberofcategorieswereidentified.Consider-ingthecontentofourreport,weaddressedthecategorywhoseaimwastofinda linkbetweenthecounsellingapproachanda methodofcompensationofspecificlearningdisabilities(learningstyles)withineducation,especiallyinelementaryschool.Allthreeinformantsreportedthattheconsequencesofspecificlearningdisabilitieswerecompensatedinsomeway;buttheanswersweredifferentconcerningtheperceptionofcompensation.TheyagreedonusingcompensatorymechanismsmostoftenintheCzechlanguagelessons.“I felt stupid that I didn’t have to do what the others had to and I did not like it. I felt that it was unfair to the others, I felt different.”CompensationforT.consistedofwritingshortdictations,whichaccordingtohimconsistedofthereductionoftwoorthreesentences,buthefailedanyway.Heneverhaddictationsevaluatedonlyinwordsorbynumberingmistakes.Compensationalsorelatedtohomework.Hedidnotusecompensationinhighschool,buthewasgladbecausehewouldnotfeelgoodaboutit.Hebelievedthatteachingshouldbeequallychalleng-ingforeverybody.InthecaseofK.,thecompensationwasperceivedasanauxiliaryfactor,shehadmoretimetocheckherwork.Sometimes,shewaswritinga fillingexerciseinsteadofa dictation.Inelementaryschool,therewasalsotheperiodwhenK.wasevaluatedverballyorbystatingthenumberofmistakesindictation,butshegota markforthefinalcertificate.Accordingtoher,itwasprobablytheperiodaftertheassessmentinthecounsellingcentre,whentheschoolreceivedtheresultsoftherecommendationsfromthisagency.Shewrotehomeworkandentriesinthe
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 59
workbooksinthesamewayasotherclassmates.M.hasthefeelingthat“when I was completing a filling exercise, I was evaluated better because of specific learning dis-abilities.”Hedidnotperceivethecompensationnegatively,becausehewasnottheonlypupilwithspecificlearningdisabilitiesinthegroup.
Alltheinformantsstatedthattheyneeda quietenvironmentwhenstudying;theycannotlistentotheradioortelevision.Allofthemalsohavetoreadthetextaloudandlearnitthisway.M and K.prefertomovewhilelearning.Informants’answersdifferedconcerningtimeneededforpreparation,thereforethelengthofconcentrationandconsequentlytheneedforbreaks,whichdependedonthelengthoflearning.Theinformantsreportedthattheydidnothavetolearnintensivelyforsomesubjects.Itdependedonthesubjectandtheissuediscussed.Homepreparationswerenotregularforanyofthem.Theyallstudiedonlyforwrittenexamannouncedinadvanceorwhentheyweretobecalledtotheblackboard.Theywroteregularlyonlyhomework,andsometimesjusta partoftheexercise,theyfinishedtherestofitatschool.M. said that he “would manage to study much of the curriculum at the same time, maybe he would remember it with difficulties, and he does not want to sac-rifice the whole day to it” T.studiedalone,hisparentsstudiedwithhimonlyatthebeginningofcompulsoryeducation.Theydictateddictationsandreada bookwithhim.Althoughhehasoldersisters,theydidnotstudytogetherwithhimbecausehewouldnotrespectthem.M.himselfsaid:“I cannot think about what I am studying, but what I get into the head, I just repeat it.”
K.studiedwithhermother,whokeptreadingeverythingaloudtoher,shelistenedtoherandthenrespondedtoquestionsona giventopic.Hermothersometimesexplainedtheissue.Shealsopracticeddictationsathome.Repliestothistopicgaveme the impression that K.studiedonlywhenhermotherwantedthat,becausesheansweredthequestionconcerningthestyleofstudyinginhighschoolasfollows:“I did not care that much there because I was my own manager there.” She also ac-knowledgedthatleavingthestyleofstudyingwithhermotherandswoppingtothestyleofpreparingaloneforschoolwasverydifficultforher.Shestudiedforpreviouslyannouncedwrittenexamsandalsowhenshefearedunannouncedexamsandwhenshewastobetestedofthesubjectattheblackboard.Shewasstudyingforhours.
Theinformantspreferdifferentstylesofinterpretationandrepresentationforlec-turingatschoolorfortrainings.Theypreferpracticaldemonstration,whichenablesthemtounderstandbettertopicandgraphicalrepresentationsoftopicsuitsthemcurrentlybest.Theyusethegraphicalrepresentationalsoforbetterunderstandingtheissue.Itisbetterforthemiftherearemoreexamples.Theyneedtofeelassuredthattheyreallyunderstandtheissuethatisbeingdiscussed.
Theinformantsconsistentlyreportedthatpayingattentionisrelatedtothetopic.Ifa topicisinterestingforthem,itiseasiertopayattention.Theyconcentratebetterontheinformationusefulforthemandrememberthembetter.“I used to study for
60 Articles JournalofExceptionalPeople,Volume1,Number4,2014
a very long time but the concentration was shorter.”Consequently,theeffectofstudy-ingwassignificantlyreduced.M.widelyusesFacebookandinternetbutitdriveshisattentionawayandhecannotconcentrateonstudyingthen.Sometimes,therearedayswhenhecanconcentrateonstudyinganditisfast,butsometimeshefailstopayattentionandhedoesnotfindstudyinginteresting.
TheinformantwithspecificlearningdisabilitiesreportedsomedifficultieswhichduetoSLDspersistedintoadulthood.However,theinfluenceisnotsoessentialtolimitedthemintheirjobopportunitiesandsatisfyinglife.Alltherespondentsarerelativelysatisfiedinthecurrentemploymentorstudentpositionanddo notthinkthatspecificlearningdisabilitieswouldsignificantlylimittheminthefuture.Weareawareofthefactthattheresultscannotbegeneralizedtothewholepopulationduetothesmallnumberoftheinformants.
2.1 Educational strategies and approaches planning
Whenplanning educational strategies and approaches, the teacherusesknowledgeofthepupil’sdevelopmentalspecificstogetherwiththerespectforhis/herindividual-ity.Duringinstruction,teacherusesstrategiesandprogrammesthatenablepupilstobetterdeveloptheirpotential(cf.Krejčová,L.Mertin,V.2012).Whenplanningeducationalstrategies,he/shereflectsonwhatthepupilshavetolearn,onthewayoftheevaluationofthepupil’ssuccess,ontheacquiredpupil’sknowledge,andonwhathe/sheisabletomanage.Whattodo tokeepthepupil’sattentionandemotionallyinvolvethem,inwhatwaythepupilswillacquirenewinformationandskills?Howtogetfeedbackonprogressofteaching?
Example: Educational strategies planning When planning, teachers can ask the following questions: What do I want students to learn or to be able to do as a result of this learning experience? How do I evaluate their success? What knowledge do the pupils already have and what they are able to manage? How do I attract and keep their attention? How can I attract the pupils emotionally? What strategy do I choose for acquiring new information and skills? In what way will the pupils acquire and practice curriculum to remember it? In what way will they receive feedback during learning and after learning?
Strategy for attracting attention: If the teachers want to attract their pupils’ at-tention, they need to have a strategy to do so. The activity will focus on: Helping the pupils to focus and keep their attention, to eliminate distractions, to concentrate, to foster independent learning, and to use the “prime time” (i. e. at the time of the pupil’s highest concentration). Directing the class activities at the beginning of teaching helps pupils to eliminate distractions, helps concentrate to prior knowledge and leads to pay-ing attention.
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 61
2.2 Strategies for secondary school pupils
Intheeighties,theKansasinstitutefocusedonteachingandlearningstrategiesforadolescentswithlearningdisabilities.TheywereguidedbytheconceptualframeworkLearningtoLearn.Itfocusesonteachingpupilsandstudentstolearn.Theteamdevelopedandtesteda varietyofeducationalstrategiesthatresultedintheLearn-ingStrategiesCurriculum.Itcontainsthreebasicelements:Acquisition,retentionandexpressionofwritteninformation(Schumaker1992InSwanson,H.L.,Har-ris, K. R.,Graham.S.2003).Theseelementscorrespondwithtaskswhichadolescentswithlearningdisabilitiesinhighschoolsare“struggling”with.Themainproblemweobserveinthefollowingpoints:Theuseoftechnologies–thinkingaloud–theinstructorsmodelthecognitivestrategiesforadolescentswithlearningdisabilities.Theadolescentsareinstructedtorepeattheindividualstepsofthestrategyverballyuntiltheymastertheminordertoautomatizeit.TheadolescentwithSLDispractic-ingthestrategywithcontrolmaterials(age-appropriatereading).Ifthepupilmastersthestrategy,he/shecanapplyittoa contentoftheeducationalfield(curriculum)oftherelevantschoolyear,andalsotoincreaseownlearningmanagement.Otherim-portantstrategiesinvestigatedbytheresearchteamwerecognitivestrategiesfocusedonreadingcomprehension,writingparagraphsandsentences,checkingmistakesinwrittentextorwritingessaysaboutone’sopinion(Swanson,H.L.,Harris,K.R.,Graham.S.2003).
3 Conclusion
Learningstrategiesarepedagogicallyveryimportantbecauseitispossibletoinflu-encetheirusebetterthanincaseofthecognitivestyle.Metacognitivestrategiesincludepupils’skillstoanalysetheirownpresumptionsforsuccessfullearning.Themainstudyskillsforpupilswithdyslexiaareorganization,readingstrategies,presen-tationskills.Teacherfocusesonmasteringtheskillsoforganizationandorderlinessinlearninghabitsofpupils.Adoptinglearningpatternscannotcompletelyeliminateproblemsofpupilswithdyslexia,buttheirfrequentusageimprovesaccesstoinfor-mationandideasaswellasitenablesthemtoexpressthemselvesclearly.However,ifpupilswithdyslexiaareencouragedtoacquireskills,theymustberesponsiblefortheirdevelopmentandusethemselves.
Preparinglessonsdependsonteacher’sabilitytorecognizepupils’specificities,theirdifficulties.He/shehastoknowhowtheymanifestinthepupils’studies.Thepupilsobtainmuchoftheinformationbyobservation,worksamplesanddifferenttypesofevaluation.Teamworkisalsoimportant,itallowsgettingandgatheringmoredetailedinformationaboutpupils,itcanhelpevaluateapproachesandcreateeffectiveteaching.Teachersshouldbecomethe“observers”oftheirpupils.
62 Articles JournalofExceptionalPeople,Volume1,Number4,2014
Previousindividualsummariesclearlypointouttoactiveresearchoncognitivestrategiesforpupilswithlearningdisabilities,primarilyintheareaofcreatingandlayingthecornerstonesinthisfield.Inthefuture,wecanexpectfurtherresearchontheissueextendedalsointomathandsocialstudies.Inaddition,weexpectre-searchinatleasttwootherareas.Firstly,weemphasizethedevelopmenttowardstheuseofstructureandplanninginparticular.Consequently,theapproachmovesfromthecognitivespheretothemetacognitivesphere.Theteacherleadspupilstointrospection,tocompletionanda self-assessmentoftheirownlearning.Tohelpthepupildevelopappropriatestrategies,teachersusemoreflexibilityandcanusetheirpedagogicalandstrategicknowledgeandexperience.Thisapproachalsoprovidespupilwithoptimumdevelopmentopportunitiesintheirownself-managedlearning.Theeffectivenessofthisapproachdependsonthepupil’sowneffortstoexpandtherepertoireofstrategies.Pupilswithlearningdisabilitiestendtohaveproblemsincognitiveandmetacognitivestrategiesinlearning;someofthemneedmorespecificandstructuredstrategiestobuilda sufficientrepertoireofstrategiessothattheycangetthemostofthem.
Second,thelingeringissueofresearchoncognitivestrategiesfocusesonhelpingpupilswithlearningdisabilitiesbecomestrategiclearners.Wearewellawareofthefactthatthepupilcannotpossiblychangeintoa strategiclearnerwhoisconsistentlyandwillinglymakingeffortstolearnbyacquiringoneofseveralcognitiveandmeta-cognitivestrategies.Theeducatorsagreethatsuccessdependsprimarilyona mass,school-wideuseoflearningstrategieswithgreatheadmaster’ssupportandteachers’teamwork.Theadoptionoflearningstrategiesandapproachesusedinthereadingprocesscannotcompletelyeliminatetheproblemsofstudentswithdyslexia,buttheirfrequentusagecanimproveaccesstoinformationandideasaswellasenablepupilstoclearlyexpresstheirideas.
4 Literature
[1]BARTOŇOVÁ,M.Specifické poruchy učení.Textyk distančnímuvzdělávání.Brno:Paido. ISBN978-80-7315-232-1. [2]BARTOŇOVÁ,M.Některéaspektyinkluzivníhovzdělávánív podmínkáchprimárníhoškolství.
AspectsofInclusiveEducationinPrimarySchoolSetting.InBARTOŇOVÁ,M.,VÍTKOVÁ,M.etal.Inkluzivní vzdělávání v podmínkách současné české školy. Inclusive Education in Current Czech School.Brno:MU,2010.1.vydání.od s.243–251,9s.ISBN978-80-210-5383-0.
[3]BARTOŇOVÁ,M.Kapitoly ze specifických poruch učení I. Vymezení současné problematiky. 2.vyd.Brno:Masarykovauniverzita,2010.ISBN978-80-210-5299-4.
[4]BARTOŇOVÁ,M.,VÍTKOVÁ,M.Strategie ve vzdělávání žáků se speciálními vzdělávacími po-třebami a specifické poruchy učení.Textyk distančnímuvzdělávání.2.přepracovanéa rozšířenévydání.Brno:Paido2007,s.159.ISBN978-80-7315-140-9.
[5]FLETCHER,J.M.,REIDLYONG.,FUCHS,L.S.Learning Disabilities: From Identification to Intervention.NewYork:GuilfordPress,2006.336p. ISBN9781593856274.
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 63
[6]HÄFELE,H.,HÄFELE,H.Bessere Schulerfolge für legasthene und lernschwache Schülerinnen durch Förderung der Sprachfertigkeit.Norderstedt:BooksonDemand,2009.328s.
ISBN978-3-8370-9019-2. [7]KACELOVÁ,V.Vymezení problematiky specifických poruch učení v dospělosti.Diplomovápráce.
Brno:MU.2012 [8]KLICPERA,Ch.,SCHABMAN,A.,GASTEIGER-KLICPERA,B. Legasthenie: Legasthenie: Modelle,
Diagnose, Therapie und Förderung.3.,aktualisierteAufl.München:Reinhardt,2010,326s. ISBN978-3-8252-2472-1. [9]KREJČOVÁ,L.,MERTIN,V.Metody a postupy poznávání žáka.Praha:WoltersKluwer,2012. ISBN978-80-7357-679-0.[10] LICHTSTEINER,MÜLLER,M.(Hrsg.)Dyslexie, Dykalkulie. Chancengleichheit in Berufsbildung,
Mittelschule und Hochschule. Bern:HEPVerlag,2011,162s.ISBN978-3-03905-713-9.[11] MATHER,N.WENDLING,B.J.Essentials of Dyslexia Assessment and Intervention. Willey,2011.
396 p. ISBN9781118152645.[12] MIKULAJOVÁ,M.a kol.Čítanie, písaníe a dyslexia s testami a normami.Bratislava:MABAGspol.
s.r.o.2012.ISBN978-80-89113-94-1.[13] PRŮCHA,J.,WALTEROVÁ,E.,MAREŠ,J.Pedagogický slovník.Praha:Portál,2001. ISBN978-80-7367-647-6.[14] SWANSON,H.L.,HARRIS,K.R.,GRAHAM,S.Handbook of learning disabilities.NewYork:
GuilfordPress,c2003,xvii,587p. ISBN15-723-0851-6.
(reviewedtwice)
doc. PaedDr. MiroslavaBartoňová,Ph.D.Katedraspeciálnípedagogiky,[email protected]
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 65
Engaging students in school leadership: Creative approaches to empowerment
(scientific paper)
Jonathan Damiani
Abstract: This study examines how principals take their lead from students, and use student voice, to create more inclusive and responsive schools, and more responsible models of leadership. I consider issues of student agency and voice within four different public school settings. Further, I consider the challenges all students face, and the ways principals are preparing to address these challenges. In this study I address roadblocks to responsive leadership in urban, suburban, and rural schools using a cogenerative qualitative approach that principals, students, and researchers can use to create new dialogue and shared theories focused on improving both administrative function and the instructional programs of their schools. This approach has revealed a new shared theory which includes young students of various abilities in models of school leadership. Central to this theory is a call for principals and researchers to use more student-driven ap-proaches, so that students can be empowered as learners and leaders in their own right.
Key words: Educational Leadership, Student Voice, Inclusive Elementary Education
1 Introduction
TheneedforprincipalstohavethetimeandtoolstofocusoninstructionandstudentlearninghascontinuedtointensifywiththeintroductionoffederalaccountabilitymandatessuchasNoChildLeftBehind(NCLB)andRacetoTheTop(RTT)1.At
1 Federalmandatesliketheseaffectvirtuallyeverypersonemployedinschools.Asaresultofthesemandates,allschoolsthatacceptfederalfundsmustmakedetailedannualreportsontheprogressofallchildren.Eachschoolmustalsoreporttheprogressoffoursubgroups:minoritychildren,childrendiagnosedwithspecialneeds,childrenwithlimitedEnglishproficiency,andchidrenfromlow-incomefamilies(Powelletal.,2009).Superintendentswillusethisinformationtodeterminewhichprincipalsarerunningsuccessfulschoolsandwhicharenot.
66 Articles JournalofExceptionalPeople,Volume1,Number4,2014
thesametime,theincongruencebetweenwhatprincipalswanttodo instructionallyandhavetimetodo,createdireconsequencesforschoolleadersandtheirworkinmakinga differenceininclusiveschoolsregardingstaffandstudentimprovement.
Principalstodayarespendingmoretimefocusingonteachingandlearningthaneverbefore.Thisshiftawayfromtheofficeimpliesthatmoredirectrelationshipsbetweenprincipalsandtheinstructionalprogramarenecessaryifnewmodelsofleadershiparegoingtoreplaceearliermodelsthatlimitedcontactwithstudentstomattersofdiscipline,andclassroomvisitstoteacherfeedback,supervision,andmodeling(Watersetal.,2003).Researchintoissuesofadministrationhasemphasizedreflectiveandinquiry-orientedapproachestoworkingwithteachers(Blase& Blase,1999).Asa result,principalsnowcollaboratemorewithothersbeforemakingdeci-sionsandmanyemploymodelsofdistributiveleadershipinwhichadultsshareinresponsibilitiesthatweretypicallyoverseenbytheadministrator(Spillaneetal.,2001).Despitetheseeffortstowardsreorganization,schoolshaveneglectedtoincludestudentsinmoreresponsivemodelsofleadership,andresearchhaslargelyignoredtheinherentpossibilities.
Thepurposeofthisstudyistodiscoverwhetherandhowprincipalshaveper-formedintheirroleasinstructionalleaders,andtodeterminebywhatmeanstheirthinkingorbehaviorsassociatedwiththisrolehavebeenshapedinpartbythestu-dentstheylead.Inordertobuildonwhatisalreadyknownabouthowstudentsperceiveschool,learning,andleadership,thisstudyattemptstoanswerthefollowingquestions:• What,fromtheperspectiveofstudents,arethemostsignificantchallengesfaced
ininclusiveschools?• Howdo schoolprincipalshelpchildrencopewithchallengestheyface?
2 Overview
Mystudy’sintentistoanalyzehowprincipalstaketheirleadfromstudents,andusestudentvoice,tocreatemoreinclusiveandresponsiveschools,anda moreresponsibleprincipalship.Inordertodescribeandexplainhowprincipalshaveusedstudents’perspectivestomeaningfullystructuretheirexperiencesofschoolsandlearning,furtherinvestigationintohowstudentscannaturallyinformtheworkbeingdonebyprincipalsmayhelptobringstudents’attitudesandfeelingsaboutprincipalsintothedominantdiscourseoneffectiveleadershippractice.
Ratherthanfocusononeaspectofeducationalleadership(e.g.,visibilityoftheprincipal),I amfocusingontheinstructionalbehaviorsofprincipalsasseenthroughtheeyesofthestudentstheylead,theadministratorsthemselves,andmyownobser-vationsoftheinteractionsbetweenthesetwooftendisparatemembersoftheinclusive
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 67
elementaryschoolcommunity.Bycapturingtheworkthat’sbeingdoneinschoolswherestudents,principals,andparentsareinterestedindevelopinga meaningfuldialogueaboutlearningandleadership,I havestartedtobetterunderstandhowtherelationshipsbetweenstudentsandprincipalsmayleadtomoreefficientinstructionalprograms,increasedcommunication,andstudentempowerment.
3 Background
Educational LeadershipTheprincipal’srolehashistoricallybeenthatofmanager.TypicaladministrativeresponsibilitiesinschoolshavebeendefinedbyPortinetal.,(1998)as:(a)maintain-ingsafeschools,(b)overseeingthebudget,(c)completingandsubmittingreports,(d)complyingwithregulationsandmandates,(e)copingwithteacherandstudentbehaviorissues,and(f)dealingwithparents.Inthe1980s,researchintoeffectiveschoolsgavebirthtotheconnectionbetweenschoolleaderandschoolsuccess(Ted-dlie&Reynolds,2000).Forthefirsttimeprincipalsbegantopaymoreattentiontostudentlearninginanefforttomakeschoolsmoreeffective.Morerecentlytheexpandingjob,anditsincreasingfocusonaccountability,standardization,andre-sourceallocation,hasnecessitatedtheemergenceofaninstructionalleader(Cooley&Shen,2003;Walker,2010),capableofimpactingstudentachievement(Leithwoodetal.,2004;Watersetal.,2003).
ThechangesbroughtonbyNoChildLeftBehindandRacetoTheTophaveforcedprincipalsintothespotlightata timewhenmanyschoolsarecopingwithsignifi-cantchangesinthesocioeconomiccompositionoftheirstudentbody,adjustingtoa steadyinfluxofEnglishLanguageLearners(ELL),andpushingtowardsinclusionofstudentswithspecialneedsinregulareducationclassrooms.2 More current de-scriptionsoftheleadershiproleinclude:initiatorsofchange,educationalvisionaries,curriculumandassessmentexperts,specialprogramadministrators,andcommunitybuilders(Darling-Hammond,2007).Schoolleadershipisnowwidelyregardedassecondonlytoclassroominstructionasaninfluenceonstudentlearning(Leithwoodetal.,2006).
Justastherelationshipsbetweenprincipalsandschoolshavechanged,sotoohavetherelationshipsprincipalsarehavingwithteachersandstudents.Principalsarespendingmoretimeobservingteachingandlearningthaneverbefore.Theoldmodelofformal,one-personleadershipisnolongerrealistic(Lambert,1998),and
2 AddinthefactthatinthepasttenyearsthenumberofU.S.studentsenrolledinspecialeducationhasrisen30percent,andthatthreeoutofeveryfourstudentswithdisabilitiesspendpartoralloftheirdayininclusiveclassrooms(NCES,2010),andthebalancingactthattakesplacebetweentheprincipalandstudents’agendasbecomesevenmorecomplicated.
68 Articles JournalofExceptionalPeople,Volume1,Number4,2014
withtheincreaseinjobdemandsprincipalsnowcollaboratemorewithothersbe-foremakingdecisionsandemploymodelsofdistributiveleadership(Spillaneetal.,2001)inwhichadultsshareinresponsibilitiesthatweretypicallyoverseenbytheadministrator.Thesemodelsofleadershiphave,untilnow,includedteacher-leaders,principal-teachers,assistantorassociateprincipals,co-principals,andmanagementservicecoordinators(DiPaola&Tschannen-Moran,2003),andprovideprincipalswithopportunitiestofocusmoreontheircapacityasinstructionalleader(Walker,2010).Despitetheseeffortstowardsreorganization,schoolshaveneglectedtoincludestudentsinmoreresponsivemodelsofleadership,andresearchhaslargelyignoredtheinherentpossibilities.
A fewargumentshavetraditionallybeenadvancedinsupportofschoolleadersconsideringstudentparticipationandinvolvementwhenmakingdecisions.1.Teachers and school based support teams have been involved in helping principals
make decisions for years. These same arguments apply, at least in theory, to students as well.Whilemostprincipalswouldarguethatitistheirjobtomakethedecisionsthataffecttheirschool,manyactivelyinvolveteachersinconversationsabouttheschool’sinstructionalprogramona regularbasis.Thishasimprovedtheoverallqualityofteaching,andmadeprincipalsintomoreresponsiveleaders(Portinetal.,2003).Ifprincipalsweretoinvolvestudentsinsimilarconversationsabouttheirexperiencesofteaching,learning,andevenleadership,studentsmightalsobecomemoreempoweredaslearners,andprincipalswouldbecomeevenmoreeffectiveleaders.
2.All students have a moral right to be involved.Whenprincipalsdo notinvolvestudents,andignorestudents’basicneeds,suchastheneedforsocial/emotionalsupport,autonomy,andrespect,studentsarelefttowonderiftheirprincipalactuallycares(Gentilucci&Muto,2007).Studentshavea righttoa voiceindeci-sionsthataffecttheirexperiencesofschoolandlearning,andwillbecomemoreresponsiblelearnersiftheyhavea highermorale.
3.Student involvement enhances cooperation and reduces conflict between all members of the school.Thereisevidencethatwhenstudents’personalneedsofaccomplish-mentandmeaningfulnessaremetbyadultsinschools,students’agendas,goals,andperspectives,willalignwiththoseofadults(Allen,1983).Whenthesegoalsandperspectivesalign,studentsandadultsaremorelikelytoworktogetherto-wardimprovingstudentlearningoutcomes.Activeinvolvementintheschool’sinstructionalprogramwillalsoprovidestudentswithopportunitiesfortheirvoice(asitrelatestoproblemsanddissatisfaction)tobeheardbythosethatmatter,andwhocanaddresstheirneedsbeforetheymanifestthemselvesina negativeway.
Therationaleforgivingstudentsa voice,andinvolvingthemindecisionsabouttheworkoflearningandleadershipisclear.Justasteachershavevaluableinformation
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 69
abouttheinstructionalprogram,studentsalsohaveinformationthatleadersneedtomakegooddecisions.Studentsalsohavea needanda basicundeniablerighttofeelcommittedandconnectedtotheirexperiencesoflearning.Whenprincipalsdo notactivelyconsiderstudentsasbeingvaluabletotheoverallsuccessoftheschool,andinvolvestudentsindecisionsthateffecttheworkoflearning,studentsinturngetthemessagethattheirparticipationandinvolvementisnotvaluedbyallmembersoftheorganization.
Students’ Perspectives of LeadershipWhatisclearisthatalmostallofthedatacorrelatingschoolleadershipwithstudentlearninghasbeencollectedfromadministrators,schoolboardmembers,parents,andclassroomteachers(Cook-Sather,2009).Fewstudieshaveexaminedwhatstudentsperceiveschoolsdo toimpacttheirlearning,andofthesefewstudies,theemphasishaslargelybeenonissuessuchasstudentsatisfactionwithschool,perceptionsofschoolclimateandculture,issuesofmotivation,classroommanagement,andex-pectationsofteachers(Wilson,2011).Asusefulastheselinesofinquirywere,nonerevealmuchaboutwhatstudentsthinkandfeelaboutprincipalleadershipanditseffectonacademicachievement,arguablythemostcentralaspectofstudentlife(Gentilucci&Muto,2007).
Whilethedeparturefroma moretraditional,managerialrolehasbeencriticalforprincipalsthatwanttoappearmoreaccessibletoboththestudentsandteach-ersintheirschools(Fullan,2008),thereisevidencetosuggestthatthesenewrolesonlyinpartfulfillwhatthestudentswerelookingforina stronginstructionalleader(Gentillucci&Muto,2007).Teacherandstudentengagementdatarelatedtothesein-structionalbehaviorshasbeenrecorded(Quinn,2002),andsecondarystudentshavebeenabletotalkabouthowtheyperceivethesebehaviors(Shultz&Cook-Sather,2001),butnostudytodatehasconsideredinclusiveelementaryschoolstudents’perspectivesonthistopic.
Ifleadershipwantstoaddressissuesofinstructionmorethoroughlytheyhavetobegintofindwaystounderstandwhatthestudentsthinkandfeelabouttheirexpe-riencesofschool.Somecriticsofstudentperspectiveresearcharguethatlearning,notunderstandingstudents’thoughtsandfeelings,istheprimarygoalofschooling.Whilethismaybetrue,itbegsthefollowingquestion;Whoisbetterqualifiedthanthestudentstotelluswhatmosteffectivelyinfluencesorhinderstheirlearningandacademicachievement(Gentilucci&Muto,2007)?
70 Articles JournalofExceptionalPeople,Volume1,Number4,2014
4 Methods
Mymulti-siteethnographyinvolvestwogroupsofparticipantsacrossfourinclusiveelementaryschools.ThefirstclassofparticipantsisfourprincipalsthatI interviewedtwiceandobserveda minimumoffourtimesthroughoutthespringsemester.Thesecondclassismadeupoffocusgroupsofelementaryschoolstudents,whichI in-terviewedtwicethroughoutthesemesterandobservea minimumoffourtimes.
Inanefforttodrawa representativesampleofstudentsI requestedthateachprincipalgrantmeaccesstogroupsofstudentsateachgrade-level(inkindergar-ten-fourthgradeschoolsthiswouldmeanmeetingwithfivegroupsofstudents,inkindergarten-fifthgradeschools,sixgroups,etc.).Whilesomeprincipalswerecom-fortableprovidingmewiththerequestednumberofstudents,otherspreferredthatI meetwithgradelevelsthattheythoughtwillbebetterabletoarticulatetheirfeelingsandattitudesbasedontheirage.Becauseagedoesnotappeartobea discriminatingfactorinthissetting,I acceptedtheiroffer.Eachfocusgroupconsistedofbetween4–6 studentswasrandomlyselectedfromclassroomsateachgrade-levelandmeanttoberepresentativeoftheoverallpopulationoftheschool(acrossdiversityareassuchasrace,specialeducation,ELL,etc.).
Implicationsforconductingfocusgroupswithvulnerableormarginalizedpopu-lations,includingchildren,havebeenconsideredandweaknessesofthismethodol-ogyhavebeenmeaningfullyreviewed.Focusgroupsarenotimmunetoresearcherbias,andtheycomewiththeirownuniquesetofchallenges.Recruitmentanddataanalysisemergeasthetwomostsignificanthurdlesresearchersfacewhenusingthisapproachacrossa varietyofdisciplines.Myinclusionofthecontemporaryqualitativeresearchmethodsliteraturehelpedmetofocusonmorespecificissuesofreflexivity,narrativeinquiry,andethnographicapproachestousingthismethodineducationalcontextsandwithchildren.Morecurrentapproachestousingfocusgroupsacrossalldisciplines,andwithmarginalizedpopulations,pointtoincorporatingthefocusgroupasa waytosummarizea seriesofobservations.
Therearea numberofstrategiesthatresearchershaveusedwhenconductingfocusgroupswithchildren.I haveemployedseveralofthesestrategiesinanefforttoconductfun,age-appropriateactivitiesfocusedontheresearchtopic.Onesuchstrategywastheuseofa warm-upactivitywithstudentsfromallgrades.Thisinvolvedbreakingtheicewiththegroup,andpracticingsomeofthebasicskillsnecessaryforparticipatingina focusgroup.I introducedthesubjectatthebeginningofthefirstinterviewbyusinga freeassociationactivitywherestudentswereaskedtoidentifyimagesofvariousadultsandtaketurnsdescribingthesameimages.ThephotographsI showedthestudentswereofa firefighter,a policeman,thepresident,andfinallytheirprincipal.A secondactivityI usedtostartmysecondstudentinterviewwastointroducethetopicina read-aloudofanage-appropriatechildren’sbookabout
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 71
principals(Creech&Bliss,2001).AfterthestoryI askedthestudentstotalkaboutthestoryasitrelatedtoourfirstdiscussion,andasa promptforourmorefocusedseconddiscussion.
ImmediatelyafterintroducingthetopicusingthefreeassociationactivityI alsoaskedstudentstoprovidemewithdrawingsorwordstheycreateinresponsetoaninitialbrainstormaboutprincipals.Wordsareonlyoneformofcommunication,andvisualrepresentationsofexperiencescanenableotherstoseeastheparticipantseesandfeels(Riessman,2008).Inmyattempttoprovidethestudentswithanopportu-nitytotelltheirstoryastransparentlyaspossible,visualdatawasusedtocapturetheperspectivesofallstudentsincludingthosethata)struggletoexpresstheirthoughtsverbally,b)areEnglishLanguageLearners,and/orarec)morecomfortableusingimagerytodepicttheirunderstandingoftheresearchtopic.Studentswereprovidedwithcoloredpencils,a standardsize(8.5”X11”)pieceofpaper,andwereaskedtodrawwhattheythoughttheirprincipaldoesbeforemylineofquestioningbegan.
Focusgroupswereconductedtwicewitheachgroupofstudents,onceatthebeginningofthesemesteraftermyinitialinterviewwiththeprincipal,andonceattheendofthesemesteraftermysecondinterviewwiththeprincipal.Thefirstfocusgroupwasfocusedongivingstudentsopportunitiestodescribetheirexperiences,relationshipswithadults,challengestheyfaceinschool,supporttheyreceivefromprincipals,andthevoicetheyaregiveninshapingschoolculture.Thesecondfocusgroupwasfocusedondeeperprobingandaskedstudentstotalkaboutdatacollectedfromtheprincipals’secondinterview.Eachfocusgroupinterviewlastedbetween30–45minutes,wasconductedbymyself,includedanotheradultpresencefromthesite,andwasaudio-recordedandtranscribedforanalysis.
I havedevelopeda mixed-qualitativeapproachbasedonElden&Levin’s(1991)modelofcogenerativelearning(seefigure1below),inordertocreatea dialoguebetweenprincipalsandstudents,anddevelopa sharedtheorythatisaction-relevantandcanbeusedtoinformandimprovetheirsituationsinthefuture.Thisframeworkhasallowedmetoexplore:(a)thevalueofincludingstudents(insider’sframework)inresearch,(b)approachesthatresearchers(outsider’sframework)havetakeninpreviousyouthstudies,(c)approachesthathavebeentakenbetweenstudentsandresearchers(cogenerativedialogue),and(d)discussthevalueandsignificanceofthiscollaboration.Thebottomtwodimensionsoftheframeworkwillbetheresult-ingtheoryI developthroughmyliteraturereview,andtheapproachI decidetotakewhenconductingmyresearchinthefield.3
3 Whilethismodelhasbeenadaptedtoservemyownexplorationofqualitativeresearchmethods,itisimportanttonotethatthisframeworkcouldalsobeusedtosupporttheappliedworkofprincipalsinterestedinusingtheirstudents’perspectivesofleadershiptodevelopnewapproachestoleadership.
72 Articles JournalofExceptionalPeople,Volume1,Number4,2014
Figure 1:Elden&Levin’s(1991)cogenerativemodelofparticipativeactionresearch
5 Findings
Thisresearchstudyincludedcasestudiesoffourdifferentgroupsofstudentsandtheirprincipals,acrossfourschoolsinNewYorkState.I addressedtwokeyresearchquestions:(1)What,fromtheperspectiveofstudents,arethemostsignificantchal-lengesfacedbystudentsininclusiveschools?(2)Howdo principalshelpchildrencopewiththechallengestheyface?Inthissection,I willbeanalyzingthemesacrossallfourschoolsinanefforttofindsimilaritiesaswellasdifferences.BeforeI providethetheorythatemergedfrommyconversationsandobservationswiththepartici-pants,I willprovidefirsta briefdescriptionofeachoftheschools.
Forest Hills ElementaryForestHillsElementary(FH)isourlonesuburbansiteandhasthesmallestnumberandpercentageofstudentsonthefreeandreducedlunch4list.Thestudents,staff,andprincipalheremakeupwhatmayappeartorepresentthetraditionalAmerican
4 Thisprogramprovidescashsubsidiesforfreeandreduced-pricelunchestostudentsbasedonfam-ilyincomeandsize.Eligibilityisdeterminedviaanapplicationprocesswhichparentscompleteandsubmiteachyear.Childrenfromfamiliesatorbelow130percentofthepovertylevelareeligibleforfreemeals.Childrenfromfamiliesbetween130and185percentofthepovertylevelareeligibleforreduced-pricedmeals.In2010,morethan31.7millionAmericanstudentsqualifiedfortheseservices(Isaacs,etal.2012).
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 73
elementaryschoolformanyreaders.Joseph,anexperiencedteacherandprincipalinthisdistrict,isalsoa prominentfigureinthecommunity.JosephtookovertheFHprincipalshipjusteighteenmonthsbeforethisstudybegan,andbroughtwithhim170newstudentsandnearlya thirdofthecurrentstaff.
OneofJoseph’skeystrengthsatFHhasbeenhisabilitytocoordinatethecur-riculumandhelptheteachersnavigatetheschool’sinstructionalprogram.Josephhasalsodevelopeda positiveschoolculturewhereteachersareabletofocusprimarilyoninstructionandstudentsenjoylearning.Josephappearstodo aneffectivejobman-aginghisresources,supportstaff,anda talentedgroupofteacherstomeetstudents’academicandsocial/emotionalneeds;asa result,hespendsthemajorityofhistimeinbetweenthebusesandbellsmanagingtheebbandflowofmanagerialresponsibilitiesthatcomehiswayduringthecourseofanaverageday.Theseresponsibilitiesincludecoordinatingwithotheradministratorsinthedistrict,handlingparents’concerns,trainingteachersaroundthecommoncorelearningstandards,andtouchingbasewithhissupportstaffaroundtheschooltomakesureeveryoneisonthesamepageandmovingforwardtogether.
MyextensiveobservationsofstudentsatFH,andmyconversationswithFH’sprincipalandstudents,haverevealedthatthesechildrenarehappytobeinschool,arerarelyinsubordinate,andaredoingwellacademically.Students’challengesatFHwerewithspecificsubjects,orwithteachers.Whenaskedhowstudentsdealtwiththechallengestheyfacedinclass,theyreportthattheyarelikelygotoa parent,peer,orsiblingbeforespeakingwithanadultinschool.Itwasonlyaftermid-waythroughourfinalinterviewthattheybegantoconsidertheirprincipalassomeonetheymightbeabletoapproachaboutproblemstheywerehavingduringoroutsideofschool.
Despite(orperhaps,becauseof)thehighlevelofstudentachievementatFH,studentshavehadfewmeaningfulopportunitiestointeractwiththeirprincipal.Josephisa strongleaderofadults,andspendshistimehelpingthemwiththechal-lengestheyfaceathisnewsite,andasa result,studentsperceivehimassomeonethatistheretospreada clearandconsistentmessage,helptheschoolrunsmoothly,andoccasionallyactasa disciplinarian.WhileJosephacknowledgestherolestudentsplayinmakingtheschoolfunction,heisnotinclinedtotaketheirleadorusetheirvoicetosupporttheirexperiencesofschoolorlearning.
Lodi ElementaryLodielementaryisthesmallestsiteinthestudy.Itislocatedthefurthestfroma citycenter,andhasa freeandreducedlunchrateof55%.Thereissignificantpovertyinthisruralcommunityanditplaysa roleinthelivesofmanyofthesestudents.Mark,anexperiencedteacherandadministratoratotherruraldistrictsinthere-gion,ispassionateaboutboostingtheaspirationrateforstudentsinthisarea.Mark
74 Articles JournalofExceptionalPeople,Volume1,Number4,2014
seeshisprimaryroleasmakingsurehehasthebestteachersworkingineachofhisclassrooms,andthattheyhavetheresourcestheyneedtohelpthestudentsachieve.WhenaskedtodescribehisdayMarktalkeda lotaboutstateanddistrictinitiatives,meetings,observation,andprovidingteacherswithfeedback.WhenI askedMarktodescribetheinteractionshewashavingwithkidshechosetotalkabouthowheworkedtomanagebehavioralproblemsatthesite.Duetothesmallsizeofthisruraldistrict,Markhasresponsibilitiesthattakehimoutsideoftheschoolmorethanhewouldlike.
BecauseMark’swalk-throughsarelargelyfocusedonobservingtheadultsinthebuildingandprovidingthemwithfeedbackontheirpractice,manyofthestudentsperceivedMarktobemoreofanofficeprincipal,whoworksbehindthescenestomakesuretheyaresupportedacademicallyandtomakesuretheyaresafeandcaredforinschool.WhenI askedstudentsabouttheirchallengesatLodi,theyspokeabouttests,andclasseswheretheyhadtroublewithcontent,andwhenI askedhowMarkhelpedthemwiththeirchallengestheynaturallyrespondedthatLodi’steachersweretheonestheywouldgotoforhelpwiththeseproblems.StudentsherewereveryresponsivetoquestionsMarkposedduringourfirstinterview,anda meaningfuldialoguedevelopedbetweenthetwothatwasfocusedondirectleadershipbehaviorssuchasMark’sapproachestospeechmaking,andhispassiveroleasobserverduringwalk-throughs,aswellasindirectleadershipbehaviorssuchastheprogramschedule,openhouse,andtheclassroommakeup.
Mark,whoadmittedhehadnotthoughtaboutusingstudentvoicebeforethisstudy,begantoseerealvalueinhowstudents’perspectivescouldbeusedtoinformhiswork,andempowerstudentsaslearners.WhileMarkhasgivenstudentsoppor-tunitiestomakedecisionsthatreflectthosetraditionallymadebystudentgovern-mentsinthepast,heremarkedthathecouldnowseethevaluestudentvoicehadforimpactinghisapproachestoleadership,andmentionedthatheconsideredthestudents’commentsasusefultohiswork.
Everton ElementaryAllofthestudentsatEvertonElementaryreceivefreeandreducedlunch,andofthefourschoolsinthisstudyithasthehighestpercentageofstudentsdiagnosedwithspecialneeds.StudentsandstaffatEvertonaredealingwitha rangeofchallengesuniquetourbaneducation,ina communitywherecrimeratesarehigh,andparentalinvolvementintheirchildren’seducationislow.
Leah,whohas25yearsofexperienceworkingasa teacher,a staffdeveloper,andanadministratorinthisurbandistrict,wasbroughttoEvertontwoyearsagotomanagetheschoolthrougha situationofcrisis.AtEvertonthechallengesstudents’faceoutsidetheschooloftenmanifestthemselvesinsidetheclassrooms.Asa result
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 75
sheisasresponsibleforkeepingthebuildingfunctioning,assheisforprovidingtheinstructionalsupportherstudentssodesperatelyneed.Leah’skeyresponsibilitiesincludedherroleasa resourceallocatorforstudents,someonewholistenstostudentsandlooksatwhattheyneed,aninstructionalleaderofteachers,andsomeonewhoisactivelyinvolvedinshapingtheschoolculture.DuringmyvisitstothesiteitbecameclearthatLeahhaslittlechoiceastohowherdaysarespent.Whilesystemshavebeensetuptodealwithacademicandbehavioralsupportsforkids,LeahspendsmostofhertimeatEvertonputtingoutfires.Despitethefreneticpaceofherwork,shehasmanagedtomaintainherpoiseandservesasanexcellentrole-modeltostudentswhovalueherpatienceandpassionforworkingwithkids.
StudentsatEvertonlisteddistractionsintheclassroom,physicalchallengesofthebuilding,andmisbehaviorastheirbiggestchallengesinschool.Leahhelpsthesestudentscopewiththesechallengesbybeingactivelyinvolvedinworkingwithstu-dentsinclassrooms,andstudentsseemtothriveontheextrasupportsheprovides.Leah’sfocusisonmakingsurethestudentsfirstfeelsafeandsupportedincommu-nitieswhereshesays“high-levelsofacademicandemotionalsupportdo notcomenaturallytomanyparents,andstudentefficacyoftenbeginstodiminishasearlyasthesecondgrade.”Whilesomeofthestudentsweredistractedandevenaggressiveduringfocusgroups,otherssawtheirprincipalasa teacher,a counselor,andevena caregiver.Thestudentsalsoremarkedthatshetriestokeeptheirexpectationshigh,andfocusedongoingtocollege.
WhileLeahhasspentmostofhertimeatEvertonreactingtoproblemsassociatedwithurbanschools,shemanagestokeepa positiveoutlookontheworkthatsheisdoing.NeartheendofthestudyLeahmentionedthatshewouldliketodevelopa studentcabinetwherebyshecouldaskstudentsaboutproblemstheywerefacingacademically,inanefforttogetstudentsmoreexcitedaboutlearning,andadultspreparedtodevelopmoreresponsiveapproachestoworkingwithkids.
Carter ElementaryCarterisanotherurbansitewherenearlyeverystudentqualifiesforfreeandreducedlunch,andwherethereisa low-rateofstudentssucceedingacademically.Thelargestschoolinthisstudy,Carteralsoservesasa beaconforthiscommunityandprovidesa rangeofservicestohelpstudentsandtheirfamiliesexperiencesomedegreeofstabilityandsuccessintheirlives.Despitethechallengesfacedbystudentsoutsideoftheschool,thenewprincipalhereappearstohaveeverythingundercontrol.
DavidarrivedatCartermidwaythroughtheschoolyearandhasalreadyhada significantimpactontheschoolculture.Davidistheyoungestofourfourprinci-pals,andtheonlyAfrican-Americanprincipalinthisstudy.Daviddelegatesmostofhismanagerialresponsibilitiestohissupportstaff,whichfreeshimupformore
76 Articles JournalofExceptionalPeople,Volume1,Number4,2014
instructionalcontactwithstudents.ThemajorityofDavid’stimeisspentinCarter’sclassroomswhereheisabletomonitorstudentprogress,havedirectinstructionalcontactwithstudents,andobserveteachers.Davidhascreateda schoolclimatewhereteachersarevaluedasprofessionals,andhastakenresponsibilityfordevelopingtheworkofhisteachersandstudents.Thisprincipal’sworkwithstudents,hasallowedhimtodevelopspecificstudent-drivenapproachestoreform,inanefforttostream-linetheinstuctionalprogram,andprovideopportunitiesformeaningfulstudentinvolvement.
Students’perspectivesatCarterreflectedtheseriousnessandsenseofurgencyDavidbringstohisworkeveryday.Studentsidentifiedtheirkeychallengesasbe-ingconfrontataionintheclassroom,bullying,andfactorsoutsidetheschoolthatgetthemofftrack.AllofthestudentsinterviewedatCartercitedtheirprincipalassomeonetheycouldgotoforhelpindealingwitha rangeofobstaclestolearning.AllofthestudentsatCarteralsosawtheirprincipalassomeonewhohelpsthemlearn,andwhoisout-of-the-officeandavailabletostudentswhentheyneedhim.Still,thesestudentswantedmoreoftheinstructionalandsocial/emotionalsupportheprovidesthem.Theywerealsoabletorespondtoverygrownupquestionsposedbytheirprincipalthatevenadultsrarelyfeelconfidentenoughtoaddresswhentalkingaboutschools.
Davidhasnotbeenafraidtodefytraditionandgoagainstthegraininanefforttoprovidehisstudentswithacademicandbehavioralsupportstheywerenotreceiv-ingbeforehisarrivalatCarter.Theappearanceandfeeloftheschool,thenatureoftheinstructiontakingplaceintheclassrooms,andstudents’commentsallreflectwhatthisnewprincipalisabout.Davidalsochosetotalkabouthisapproachestoleadershipandtherolekidsplayinmakingschoolsworkfromthevantagepointofa servantorguide.
6 Conclusions: Toward a Theory of Engaging Students in School Leadership
InthefollowingpassageI willpresenta newsharedtheoryonhowprincipalscancreatemoreresponsiveapproachestoschoolleadershipbyincludingstudents’per-spectivesonschoolandschoolleadershipintheirownagendas,strategies,andgoals.Bybetterunderstandingprincipals’perspectivesofleadership(andtheiragendas,strategies,andgoals)researchersandpractitionerscanseehowtheyareconnectedordevelopedinresponsetothoseofthestudents.Findingsindicatethatwhenprincipalslookinsideoftheirschoolforhelpwithsolvingproblemsfacedbytheirstudents,insteadoflookingoutsideofschool,moreauthenticandtransformationalapproachescanbedevelopedtocreateschoolsthataremoreresponsivetostudents’needs.
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 77
Schoolsteachkidsabouthowtodealwithproblemsbasedonhowprincipalsdealwiththeirownchallenges.Researchdemonstratesthatwhenteachersdevelopstrate-giesdesignedtomeetstudents’academicandpsychologicalneeds,theycanpromotetheirstudentssenseofresponsibilityandvoiceintheclassroom(Schneider,1996).Whenteacherssetupsystemstoactivelyengagestudentsintheirownlearning(suchascooperativelearning,self-assessment,student-teachercontracts,etc.),studentsbecomemoreresponsibleandareabletoself-directmoreoftheirbehaviorovertime(Gossen,1992).Manyteachershoweverarereluctanttogivestudentsopportunitiesliketheseandcangetcaughtupin(andevencontributeto)thesameself-defeatingmindsetoftheirstudents(Schneider,1996).Teachersandevenprincipalshaveforyearsattributedcausesforfailuretoanynumberofcausesoutoftheirdirectcontrol(e.g.,lackofresources,poorparenting,etc.).
Whileprincipalshavelongbeenregardedastheschoolmanagers,theyarealsoina uniquepositiontoshowa largerpopulationofstudentsthattheycanorcan-nothavea voicebasedontheworkthattheydo.Thishasfar-reachingeffectsonthestudentsandtheirfutureroleinsociety.Italsohasa directimpactonhowteacherschoosetoruntheirclassroomsandstructuretheirinteractionswithkids.Whilemostprincipalsinthisstudyagreedthata bigpartoftheirjobwasmakingsuretheyhadthebestteacherspossible,andthatteachersweretheonescapableofimpactingchange,principalsinvariablyshapetheworkoftheteachers,andenactpoliciesandpracticethataffectsthewayteachersteach,andstudentslearn.
Eventhoughprincipalstodayaresupposedtospendmoretimefocusingonteach-ingandlearningthaneverbefore,thereisevidencethatstudentsandstudentlearningoftentakea backseattotheworkofadultsinschool.Conversationsandobservationattheseschoolsalsoindicatedthatthereisa discrepancybetweenwhatsomeprin-cipalssay,andwhattheyactuallydo.Whilesomeprincipalsacknowledgethevaluestudentdrivenapproachestoschoolleadershiphaveforempoweringkids,I foundlimitedevidencethatprincipalsactivelyusestudentvoiceorinteractwithstudentsdirectlyinanefforttoaddressproblemsintheirschools.
Findingsfromthefieldindicatethatthisisnotbecauseprincipalscannotordo nothavethetimetousemorestudent-drivenapproachestoguidetheirinstruc-tionalprogram.Instead,thisresearchhasfoundthatprincipalschoosetousetheseapproachesbasedonwhetherornottheyvaluereceivingdirectinputfromkids.Principalschoosetoletstudents’perspectivesaffecttheiragenda,strategies,andgoalsbasedonwhetherornottheybelievethisisimportant.Whilesomeprincipalsmaybeunawarethatsucha choiceevenexists,andinsteadtakemoretraditionalandmanagerialapproachestotheirwork,thereisevidencethatsomeprincipalsareawarethatthereisa choice,andstillmakeanactivedecisiontonotgivestudentsopportunitiestosharehowtheythinkandfeelaboutschool.
78 Articles JournalofExceptionalPeople,Volume1,Number4,2014
Principalswhoarenotusingstudent-drivenapproachestoguidetheirprincipal-shipareleftwithpersonalinclinationorexternallyderivedmodelsintheirquesttoprovidestructuretotheschool’sinstructionalprogram.Manyofthesechoiceswerebasedonassumptionsprincipalshaveaboutwhatstudentsarecapableofcontribut-ingtoa discussiononwhatdoesordoesnotworkinschools.Theseassumptionswerelargelybasedon(1)whetherornotithadoccurredtoprincipalsthatusingstudentvoicewasa possibility,(2)perceivedcompetenceasitrelatestoa student’sage,and(3)preconceivednotionsaboutwhetherornotstudentsshouldhavea sayintheirexperiencesofschool.Theseassumptionsexistedwhenprincipalsdevelopanddemonstrateleadershipbehaviorsthatunderestimatewhatstudentsarecapa-bleofcontributingtotheschool.Whileeveryprincipalinthestudywaswillingtoengageinanindirectconversationwithstudentsaboutthechallengestheyface,fewprincipalsactivelylooktoseewhatstudentsthinkaboutschool,andevenfewerusestudentvoicetoshapetheirapproachestoleadership.
Atoursuburbansite,studentssharedstoriesaboutteachersthatmadethemfeeluncomfortable,andbytheendofthestudy,begantorealizethattheprincipalwassomeonethatcouldhelpthemwiththeirproblems.Atourruralschool,studentswantedtheirprincipaltodevelopsomenewapproachestohisinteractionswithstudents,andalsoprovidedsomeideasforrestructuringschooleventslikeopenhouseandassembly.Atoneurbansite,students’behaviorduringfocusgroupsalonedemonstratedthattheywerehavingtroubleengagingwiththeinstructionalprogram.Theyalsociteda rangeofphysicalfactorsaroundtheschool(suchastheconditionoftheclassroomsandhallways),andfactorsinsidetheclassroom(suchasdisrup-tivestudentsandoverwhelmedteachers)ashindrancestotheirlearning.Atanotherurbanschoolstudentsspokeopenlyabouthowtheywantedmoreofthedirectin-structionalandsocial/emotionalsupporttheprincipalwasalreadyproviding.
Attherootofmanyoftheassumptionsmadebyprincipalswasa reluctancetoconcedeormodifytheircurrentpositionofauthorityandadopta moresharedap-proachtomakingdecisionsinschools.Thisautonomy,whichgivesprincipalstheirsenseofprofessionalismanda feelingofcontrolovertheirschoolcanalsogetinthewayofcollaborationwithstaffandstudents,andcommunicationstructureswhichmightallowforalternativeformsofinteraction.Opportunitiestomakeadjustmentstotheinstructionalprogramandtoimpactstudentlearningoutcomesarelostwhenleaderstakemoreautocraticapproachestomakingimportantdecisionsinschools.
Bothmyreviewoftheliteratureandresearchdatafromthefieldindicatethatprincipalswhoincreasestudentresponsibilityandusestudentvoicetodrivetheirinstructionalleadershiphaveempoweredstudentsaslearners.Thisempowermenthasresultedinbetterbehavior,increasedengagementintheinstructionalprogram,andthedevelopmentofa moresharedsetofgoalsbetweenstudentsandstaff.Prin-cipalshavedonethisbyplayinga morevisibleandaccessibleroleschool-wideand
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 79
inclassrooms,andbyhavingmoredirectinstructionalcontactwiththestudents.Outsideoftheclassroomstheseprincipalshavealsobeenabletospeakwithstudentsaboutproblemsthataffecttheirlearninginsideandoutsideofschool.Thedatasug-gestthatinstructionalleaderscandevelopmorespecificgoalsusinga visionwhichissharedbythestudents,reflectsstudentconcerns,andinwhichstudentshada voiceincreating,iftheywanttocreate,a schoolclimatethatismoreinclusive,conducivetolearning,andbetterequippedtorespondtochange.
Researchthatseekstounderstandprincipals’perceptionsofhowschoolsbestoperate,andthenplacesadultperspectivesalongsidethosestudentshaveaboutschool,candevelopa betterunderstandingofhowstudentsandprincipalscanworktogethertocreatemoreequitableandexcellentschools.Principals’directandindi-rectapproachestopromotingtheinstructionthattakesplaceintheirschoolshasa significantimpactonstudents’experiencesofeducation.Bybetterunderstandinghowprincipalsthinkabouttheapproachestheytake,students’learningoutcomesandteacherefficacycanbeenhanced.Principalsandstudentsplaykeyrolesinshap-ingschoolculture,andenterschoolwithsimilargoals.Thesesharedgoalsincludeanintentiontosucceedasparticipantsintheacademicprogram,aswellasa strongdesiretobesupportedsociallyandemotionally.Principalswillingtoexploretheirperceptionsofstudentsandstudentlearningindeptharebetterabletounderstandtheirrelationshipswithstudents,andtheroletheyplayindeterminingthesuccessofboththeschoolandtheprincipalship.
Students’thoughtsandfeelingsmatterandcanprovideschoolsandtheresearchcommunitywithnewevidencethatbeusedtoinformtheexistingresearchonin-structionalleadershipandadministrativefunctioninthefield.Thisstudyhasshownthatprincipalsareinterestedinwhatyoungerstudentshavetosayabouttheirwork.Ithasalsohelpedprincipalsrealizethevaluetheseperspectiveshaveforshapingtheirworkasschoolleader.
Studentshavealsobeenaffectedbythisstudy.Studentsfeltempoweredwhenadultstookthetimetoaskthemabouttheirchallenges.Whenaskedaboutwhattheywouldliketoseedonedifferently,somestudentswerequicktoaskformoreinstructionalsupportfromtheirprincipals.Othersremarkedthattheywouldliketoseetheirprincipalsdevelopnewwaysofapproachingtheiradministrativefunction.Stillothersspokeopenlyabouttheirteachersandpeers,orabouthowtheirprincipalcouldhelpsupportthemsociallyandemotionally.
Ineachschoolstudentshaddifferentsetsofchallengesandadultshelpingthemwiththesechallenges.Inalloftheschoolshowever,studentswereclearaboutwhattheycouldusetohelpthemlearnbetter,andineachofthesecases,principalswereina positiontoadapttheiragendas,goals,andstrategiestothoseoftheirstudents.Principalsthatunderestimatestudentagency,havetroubleaddressingdiversity,and
80 Articles JournalofExceptionalPeople,Volume1,Number4,2014
failtomakethemselvesaccessibletotheirstudentslimittheirownopportunitiesforreform.
7 References
[1] Allen,W.(1983).Classroommanagement:students’perspectives,goals,andstrategies. American educational research journal, 23(3),p. 437–459.
[2] Blase,J.&Blase,J.(1999).Principals’instructionalleadershipandteacherdevelopment:teachers’perspectives.Educational administration quarterly, 35(3),p. 349–78.
[3] Cook-Sather,A.(2009).Translation:analternativeframeworkforconceptualizingandsupportingschoolreformefforts.Educational theory, 59(2),p. 217–231.
[4]Cooley,V.E.&Shen,J.(2003).Schoolaccountabilityandprofessionaljobresponsibilities:a per-spectivefromsecondaryprincipals.NASSP Bulletin, 87(634),p. 30–34.
[5]Creech,S.,&Bliss,H.(2001).A fine, fine school.NewYork:JoannaCotlerBooks/HarperCollinsPub.
[6]Darling-Hammond,L.(2007).Race,inequalityandeducationalaccountability:theironyof‘nochildleftbehind.’Race, ethnicity and education, 10(3),p. 245–260.
[7]DiPaola,M.&Tschannen-Moran,M.(2003).Theprincipalshipata crossroads:a studyoftheconditionsandconcernsofprincipals.NASSP Bulletin, 87(43),p. 43–65.
[8]Elden,M.&Levin,M.(1991).“Cogenerativelearning:bringingparticipationintoactionresearch,”InW.F.Whyte(ed.),Participatory action research. NewburyPark,CA:Sage.
[9]Fullan,M.(2008).The six secrets of change: what the best leaders do to help their organizations survive and thrive. SanFrancisco:Jossey-Bass.
[10] Gentilucci,J.,&Muto,C.(2007).Principals’influenceonacademicachievement:thestudentperspective.NASSP bulletin, 91(3),219–236.
[11]Gossen,D.(1992).Restitution: Restructuring school discipline. ChapelHill,NC:Newviewpublica-tions.
[12] Isaacs,J.etal.(2012).Kids’ Share 2012: Report on federal expenditures on children through 2011 (ResearchReport).Retrievedfromhttp://www.urban.org/projects/kids_share.cfm
[13]Lambert,L.(1998).Building leadership capacity in schools. Alexandria,VA:Associationforsuper-visionandcurriculumdevelopment.
[14] Leithwoodetal.(2004).How leadership influences student learning.Minneapolis,MN:Centerforappliedresearchandeducationalimprovement.
[15] Leithwoodetal.(2006).Successful school leadership: what it is and how it influences pupil learning. Nottingham:DFESpublications.
[16]NCES(2010).NationalCenterforEducationStatistics,Digest of Education Statistics,2010(13),Chapter2. U.S.DepartmentofEducation.
[17]Portinetal.(1998).Introductiontothespecialissue:characteristicsofthesecondaryprincipal-ship.NASSP,87(2),p. 1–8.
[18]Portinetal.(2003).Making sense of leading schools: a national study of the principalship.Seattle:CenteronReinventingPublicEducation,UniversityofWashington.
[19]Powell,D.etal.,(2009).ImpactofNoChildLeftBehindoncurriculumandinstructioninruralschools.The Rural Educator, 31(1),p. 19–28.
[20] Quinn,D.M.(2002).Theimpactofprincipalleadershipbehaviorsoninstructionalpracticeandstudentengagement.Journal of educational administration, 40(5),p. 447–467.
[21] Riessman,C.K.(2008).Narrative methods for the human sciences.LosAngeles:SagePublications.
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 81
[22] Shultz,J.J.&Cook-Sather,A.(2001).In our own words: students’ perspectives on school. Lanham,MD:Rowman&Littlefield.
[23] Schneider,E.(1996).Givingstudentsa voiceintheclassroom.Creating a climate for learning 54(1),p. 22–26.
[24] Spillaneetal.(2001).Investigatingschoolleadershippractice:a distributedperspective.Educa-tional researcher, 30(3),p. 23–28.
[25]Teddlie,C.&Reynolds,D.(2000).International handbook of school effectiveness research. London:RoutledgeFalmer.
[26]Walker,J.(2010).Reorganizingleaders’time:doesitcreatebetterschoolsforstudents?NASSP Bulletin, 93(4),p. 213–226.
[27]Watersetal.(2003).Balanced leadership: what 30 years of research tells us about the effect of leader-ship on student achievement. Aurora,CO:mid-continentresearchforeducationandlearning.
[28]Wilson,J.T.(2011).Students’PerspectiveonIntrinsicMotivationtoLearn:A modeltoguideedu-cators.A Journal of the International Christian Community for Teacher Education, 6(1),p. 224–41.
(reviewedtwice)
JonathanDamianiNagoya,[email protected]
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 83
Action research in home-based early intervention of developmental disorder children
(overview essay)
Xinrui Li
Abstract: This article mainly reports the action research in the home-based early inter-vention implemented on 20 developmental disorder children aged 0–6 years in Chong-qing downtown, which lasted 4 years and aimed at the exploration of the service mode and the transdisciplinary team cooperation mode of the home-based early intervention implemented on the developmental disorder children aged 0–6 years in Chongqing downtown. All team members (professionals and family members) worked together to develop the individualized family service plan (IFSP). A variety of methods was used to record and share personal reflections, observations and assessment, formally and informally, within the team. The result shows that the home-based early intervention service mode has active influence on the children and their families, but the professional integration of transdisciplinary team cooperation mode is much difficult, affecting the results of early intervention.
Key words: developmental disorder children; home-based; transdisciplinary team co-operation; early intervention; action research
1 Introduction
Accordingto“samplingsurveyonthedisorderchildrenaged0–6yearsinChina,2001”,Chinahasabout1.417milliondisorderchildren,thenumberofwhichisincreasedata rateof0.199millionperyear.Amongthem,thedisorderchildrenneedingrehabilitationtrainingorserviceaccountfor68–75%,whilethoseacceptedrehabilitationtrainingorserviceaccountforonly10.46%,indicatingthatmostdis-orderchildrenthatneedrehabilitationtrainingorserviceareup-broughtathome.InChongqingMunicipality,themonitoringdataofbirthdefectsbasedonpopula-
84 Articles JournalofExceptionalPeople,Volume1,Number4,2014
tionconductedfromOctober1,2008toSeptember30,2011showsthattherewere166 casesofbirthdefectamong22,250perinatalinfants,withthetotalincidenceratebeing0.007461%,or0.0097%and0.00692%intownandvillagerespectively.(ChunyanHe,GaodongZhang,etal,ChongqingMedicine,2012).Itcanbeseenthattherearemanydevelopmentaldisorderchildren,buttherearenotenoughorgani-zationsthatcanprovideearlyinterventionservicesinChongqing,witha largegapexistingbetweenthesupplyanddemand.Atpresent,theearlyinterventionmodesagainstdevelopmentaldisorderchildreninMainlandChinamainlyincludefamilymode,centermodeandfamily-centermixedmode.A partofdevelopmentaldisorderchildren,afterdiagnosisinhospitals,rarelyacceptprofessionalrehabilitationandeducationtrainingapartfromsinglemedicaltreatment. A partofparentsofdevel-opmentaldisorderchildrentrytofindearlyinterventionresourcesfortheirchildren,butarealwaysintheabsenceofprofessionalguidanceorunabletofindsuitableresources,ortheexistingresourcesarenotwellintegratedandhavenotplayedtheirmaximumefficacy,finallyresultinginpartofchildrenmissingthecriticalperiodofearlyinterventionandaffectingthedevelopmentofchildrenpotency.BasedonthestatusofearlyinterventionofdevelopmentaldisorderchildreninChongqingMunicipalityandinreferencetosomeadvancedexperiences,severalseniorteachersengagedinearlyinterventionmodeinChongqinghavetakentheleadinexploringthehome-basedearlyinterventionmode,andthisactionresearchhaslasted4yearsand20childrenandtheirfamilieshavebenefitedtherefrom.
Inthisresearch,homeserviceteachersdirectlyvisitedthefamilyofdevelopmen-taldisorderchildren,givingguidancetothepatentshowtobringuptheirchildrenandtransferredtheirrehabilitationtrainingtechnologytotheparentsorthemaincaretakersofchildren,soastostrengthenthebringing-upknowledgeandskillofparentsandassistfamilymemberstounderstandthegrowthandrequirementsoftheirchildren.Inaddition,theteachersalsodeliveredpersonallecturesandorganizedgroupinteractiveactivitiesandparentgrowthgroupactivitiestohelpparentsfindprofessionalresourcesandintegraterelevantresources.Intheprovisionofchildrenorientedtreatmentandspecialeducationservices,parentsarethemaindecisionmakersandparticipantsandthekeyofservicesisthetransferofearlyinterventiontechnologytotheparentsorthemaincaretakersofchildrenandtheprovisionofsupporttotheparents,sothatthechildrencangainthemaximumdevelopmentthroughearlyinterventionandthefamiliescanimprovetheircapacities.
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 85
2 Methodology
2.1 Object
Theobjectsofthisresearchare20developmentaldisorderchildrenaged0–6yearsandtheirparents(orthemaincaretakers:parents,grandparentsornursemaids).Amongthem,16areboysand4aregirls,including3childrenwithfragileXsyndrome,6 childrenwithdevelopmentaldelay,3childrenwithinfantileautism,3 childrenwithDown’ssyndromeand5childrenwithcerebralpalsy.Therelevantspecializedpersonsparticipatedintheresearchare3teachersengagedinspecialeducationaswellasa pediatrician,a physicaltherapist,a speechtherapistanda psychologicalconsultant.
2.2 Action research procedure
2.2.1 Planning:collectionofrelevantresearchandpracticeinformationintheearlyinterventionofdevelopmentaldisorderchildren,understandingthedevelopmentsituationofearlyinterventioninmanyaspectsfrombackground,theoreticalbasisandservicemodetoimplementationachievements.Drawingupa setofhome-basedearlyinterventionserviceprocedurewithreferencetotheadvancedexperiencesandincombinationwiththenativeactualecologicalandexistingresources:Accept-ance – assessment – holding individualized family service meeting – drafting an individualized family service plan (IFSP) – executing the individualized family service plan (IFSP) – service assessment – continuous service or referral/settle-ment – individual track and follow-up visit.
2.2.2 Action research cycle: operatingasthedraftedhome-basedearlyinterventionserviceprocedure,servingsuccessively20developmentaldisorderchildrenandtheirfamilies,4monthsasa cycle,withtheexecutiontimeofeachindividualfamilyserviceplanbeing3monthsandthevisitingteacherprovidingvisitingserviceoncea weekand1.5hoursata time.Theteachersperformedone-to-oneteachingorrehabilitationtrainingtothechildren,madeassessmentandrecommendationonthebehaviorsofchildreninfamilyenvironment,exchangedteachingstrategieswithparents,adjustedanddesignedsomefamilyactivitiesaccordingtofamilysituationanddirectedpar-entshowtocontinueteachinginfamilyenvironment.Inthecourseofimplementa-tion,individualassessmentrecord,familyinterviewrecordandvisitingservicelogwerecompleted.Theimplementationprocedureofhome-basedearlyinterventionwasassessedevery6monthstounderstandtheexecutionoftheserviceprocedure,highlightingtheassessmentoftheexecutionofindividualizedfamilyserviceplan,thechangeofabilitiesofchildrenandtheirfamiliesandthetransdisciplinaryteamcooperationbetweenrelevantprofessionals.Continuoussummarizationinconnec-
86 Articles JournalofExceptionalPeople,Volume1,Number4,2014
tionwithindividualcaseresearches:assessment,comprehensivestudyandjudge,draftingandimplementingtheactualexperiencesinvariousaspectsincludingIFSP,adjustingandperfectingthehome-basedearlyinterventionserviceprocedure.
2.2.3 Assessment:Home-basedassessmentwasadoptedinthisresearchwithchil-drenandtheirfamiliesasobjects,aimedatunderstandingtherequirementsofde-velopmentaldisorderchildrenandtheirfamilies,thecapacities,resourcesandstudyenvironmentofchildren,therelationandinteractionbetweenchildrenandtheirmaincaretakers.Theprocedureofmeasurementisa continuoussystematicpro-cedureofdisciplinaryteamcooperation.Childrenassessment:Curriculum-basedassessmentwasadoptedbyselectingPortageearlyeducationinstructionmanualofWisconsin,USasreferencetounderstandtheabilitylevelofchildrenineverydevel-opmentfieldsofdailylife,action,language,socialbehaviorandcognition.Inaddi-tion,environmentandecologicalassessmentwasperformedthroughself-compiled“environmentalanalysissheet”and“environmentadjustmentcard”.Intheassessmentofchildrenstudycharacteristics,“Neuropsychologicaldevelopmentdiagnosisscaleofchildrenaged0to4years”and“Denverdevelopmentscreeningscale(DDST)”wereusedtounderstandthedevelopmentlevelofchildrenand“Children’stemperamentassessmentsheet”wasselectedtounderstandthetemperamentlevelofchildren.Familyassessment:Thecharacteristicsandrequirementsoffamilieswereunderstoodthroughfamilyvisit,familyinterestsurvey,familyenvironmentassessmentandpar-entcharacteristicssurvey.
3 Results
3.1 Influence of home-based early invention to the children:Asseenfromthearrangementatpresentofdevelopmentaldisorderchildrenwhoacceptedtovis-itingservice,among20cases,throughhome-basedearlyinterventionservicefor2–6 cycles,55%ofthechildrenwassuccessfullyreferred,20%wasenrolledintocommonkindergartensorprimaryschools,35%wasenrolledintospecialeducationinstitutionsand20%ofthechildrenandtheirfamiliescontinuouslyselectedvisitingservices.Comparedwiththechildreninthesameagegroupwhohavenotacceptedhome-basedearlyintervention,therateofenteringintokindergartensandcommonprimaryschoolsaswellastheroutinestudy,lifeandbasiclearningabilityishigh.
3.2 Influence of home-based intervention on families:75%ofthefamiliesweresatisfactorywiththehome-basedearlyinterventionservicemode.Theupbringingcapacityoffamilies,includingupbringingstyleandskill,problem-solvingabilityandbehaviormanagementability,wasliftedfor25%inaverage,andtheunderstanding,acceptance,adaptabilityandconsciousnessofrightwerealsoimproved.
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 87
3.3 Thecooperationbetweenthestaffoftransdisciplinaryteamintheearlyinterven-tionismuchdifficult,mainlymanifestedinlackofrelevantprofessionalpersonsandnoteasytoadjustthetimetodiscussindividualcases,especiallyforpediatriciansandtherapeutists.
4 Discussion
4.1 Procedure of home-based early intervention
4.1.1 Detection and referral period:themethodofearlydetectionofchildrenwithdevelopmentaldisorderiscomplete.Moreandmoredisabledchildrencanbediscoveredbyantenatalexamination,neonatalscreening,childrenprotection,chil-drenneuropsychologicaldiagnosisandothermeasures;however,astothepublicitymethodoftheearlyintervention,thethreesystems,medicaltreatment,educationanddisabledfederationwhichoperateindependentlyhasledtoinsufficientknowledgeofthemeanings,servicecontentandeffectata largenumberofparents.Aftertheearlydetectionofchildrenwithdevelopmentaldisorder,someorganizationsdidn’tknowthattherearerelevantinstitutionstowhichthedevelopmentallydisabledchildrencanbetransferredtoordidn’tintendtotransferbecausetherewasa limitednumberoforganizationswhichcanprovideearlyintervention.
4.1.2 Assessment period:Becausethethreeorganizations,i.e.medicaltreatment,educationanddisabilityfederation,whicharemainlyinserviceofdevelopmentallydisabledchildren,havebeeninoperationindependentlyaccordingtodifferentsystemandservicemodewithdifferentassessmentmethods,a childoftenneedstoreceivemanyassessmentsandmanyassessmentreportsfromdifferentorganizations,someofwhicharenotveryhelpfultothefollow-upearlyinterventionwithwoefullyin-adequateinteractionbetweenprofessions.
4.1.3 Placement and intervention period: Duetoinsufficientresources,somede-velopmentallydisabledchildrenusuallychoosetogotohospital,earlyspecialedu-cationalinstitutionsordisabilityfederationrehabilitationcentertotakethesimpledrugtherapy,earlyspecialeducationorrehabilitationtraining,ortakemanyearlyinterventionservicesinmanyinstitutionstiredly.
4.2 Home-based Assessment
Home-basedassessmentincludesbothchildrenandfamilies.Differentfamilieshavedifferentrequirementsofearlyintervention,professionalneeds,serviceneeds,in-formationneeds,spiritualneedsandeconomicneeds,inorderofproportionofthe
88 Articles JournalofExceptionalPeople,Volume1,Number4,2014
numberofpeoplewhorequireearlyintervention.Familieshopeearlyinterventionfocusesontheneedsofchildren.Itiswhenprofessionalsdemonstratetheirstrengthinearlyinterventionservice,improvechildren’sabilityandgraduallybuildtrustinfamilymembersthatparentsrevealtheneedsoftheirsandthefamily’s.
4.3 Drafting and implementation of Individualized Family Service Plan (IFSP)
Asthequestionnairesurveyandthein-depthinterviewshow,familieshopethatearlyinterventionfocusesonchildren,whichisalsothereasontheytakepartinearlyintervention.AccordingtotheanalysisofIFSP,about80%aretargetedatchildren.Itisthehopeoffamiliesthatserviceswillbecenteredonchildrenandthechiefap-proachishome-basedearlyinterventiontomeettheneedsofchildren.
4.4 Cooperation between relevant professional teams
Manydepartmentslikehygiene,populationandfamilyplanning,civiladministra-tion,education,laborandsocialsecurityanddisabilityfederation,etc.areinvolvedinearlyintervention.Thebarriersbetweendifferentdepartmentsandregionsandtheoverlappingbusinessoperationsleadtotheincompletenessoftheworksystemofearlyinterventionandplanningandcoordinationworkmechanism.Themainfactorthatinfluencesthecooperationbetweenprofessionalteamsisthemutualsup-portbetweenprofessions,professionals,institutionresourcesandinstitutionalsec-tionalism:allinstitutionsareholdingaffirmativeattitudestowardstheintegrationserviceofprofessionalteams,butthedilemmatobuildtrans-disciplinaryintegrationteamsliesmainlyintheshortageofhumanandinstitutionalresources.Atpresent,thethreelargesystems,i.e.medicaltreatment,educationanddisabilityfederationinChongqing,arecarryingonearlyinterventionserviceandhavedevelopedtheirservicemode.However,duetothedifferentprofessionalbackground,theemphasis,theinterventionmodesandcontentarequitedifferent,whichresultsintheselectionofa childamongseveralinstitutions,suchasNingning,a childwithcerebralpalsywithepilepsyandintellectualdisability,whoneedstogotothehospitaltotakeregularoutpatientservices,medicinetocontrolepilepsy,acupuncture,massagetorelievemuscletension;andan-hourcognitivetrainingina specialeducationalorganization,an-hourphysiotherapeuticina disabilityrehabilitationcenterandmorethanthreehoursontransportationeveryday.
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 89
4.5 Situation analysis (SWOT)
4.5.1 Strengths• Thecompletematernalandchildhygienesystemenablestheearlyscreeningand
theearlyinterventionofchildrenwithdevelopmentaldisorder.• Parentshavea highacceptabilityofearlyintervention;theyactivelytakepartin
theplanandhaveplayedanimportantrole.
4.5.2 Weakness• Thereisa lackofsourceoflawandpolicyguaranteeintheearlyintervention
ofchildrenwithdevelopmentaldisorder,suchastheemergencyrehabilitationprogramspecifictothepoordisabledchildrenof0–6yearsoldco-launchedbyChinaDisabledPersons’FederationandMinistryofFinance,whichisa periodicalprogram,whoseservicemodeisshortofsystemguarantee.
• Theinsufficientpublicityofearlyinterventionandinsufficientknowledgeofpar-entsoftenleadtothemissingofrelevantresourcesandbestserviceopportunities.
• Thereisa shortsupplyandunevendistributionofearlyinterventionresources,failingtoensurethefairnessandprincipleofproximityofresourceutilization,whichhasmademanychildrenwithdevelopmentaldisorderunabletoreceivetimelyservice.Thereisa largegapbetweensupplyanddemand.
• Althoughearlyinterventionisa kindofserviceofhumanization,multi-profession,trans-disciplinaryteamcooperation,thecoordinationofthetrans-disciplinaryworkisnoteasy.Parentsandchildrenstillneedtorunhereandthere,tiredly.
4.5.3 Opportunity• Ourcountryandalllevelsofgovernmenthavegraduallypaidattentiontoearly
intervention,andChinaDisabledPersons’Federationhasputforwardthat“Reha-bilitationserviceswillbeavailableforeveryonein2015”andlaunchedemergencyrehabilitationprogramspecifictothepoordisabledchildrenof0–6yearsold.
• A lotofstate-runspecialschoolsofthecompulsoryeducationstageandcivilian-runspecialeducationalinstitutionshavebegunearlyinterventionservicetore-spondtotherequirements.
4.5.4 Threat• Atpresent,theearlyinterventionworksystemhasnotbeencompleted,planning
andcoordinationworksystemhasnotbeenestablished,andthereisnostandardserviceprocessoftheearlydetection,earlydiagnosisandearlyinterventionfordevelopmentallydisabledchildren,ora lackofeffectiveconnectionbetweenwork-inglinks,whichwillcausethedelayofthebestopportunityofearlyintervention.
90 Articles JournalofExceptionalPeople,Volume1,Number4,2014
• Thelackofcooperationbetweenallrelevantprofessionservicesandinstitutionalsectionalismbothmakeitdifficulttointegratethetrans-disciplinaryteams,di-rectlyexertinginfluenceontheeffectofearlyintervention.
Insummary,althougha quiteeffectiveinterventiontechnologyhasbeenconcludedgraduallyforthetreatmentofmillionsofchildrenwhoneedearlyintervention,a systemhasnotformed,withsomeoperationtechnologiestooscatteredtoguaran-teetheservicequality.I suggestthatthegovernmentintroducesrelatedpolicy,lawsandregulationstoensuretheuniversalityandeffectivenessoftheearlyinterventionandconstructtheimplementationplanfortheservicetoenhancetheexchangeandcooperationbetweenorganizationsandprofessionsandformconsensusandtacitunderstandingbetweenrelevantprofessionsandpersonneltomakeuptheinsuffi-cientmanpowerandresources;moreover,theassessmentmethodsandinstrumentforchildrendevelopmentshouldbeintegratedtofacilitatethereferralofindividualcasesandresourcesharing.
5 Bibliography
[1] ChinaDisabledPeopleUnion;MinistryofPublicHealthofthePeople’sRepublicofChina;Min-istryofPublicSecurityofthePeople’sRepublicofChina;NationalBureauofStatisticsofChina;UnitedNationsChildren’sFund.(2003).TheSamplingSurveyonDisabilityin0–6Years-OldChildreninChinain2001.ChinaStatisticsPress.
[2]HeChunyan,ZhangGaodong,ZhangHua,ZhouXiaojun,XiaoNian,WangLan,JiangQiujing,…ZhouWenzheng.(2012).Analysisonpopulation-basedmonitoringresultsofbirthdefectsinChongqingpartialareasduring2009–2011.ChongqingMedicine,41(25).
[3]YangXijie.(2003).ReviewofResearchesontheEarlyInterventioninMainlandChina,ChineseJournalofSpecialEducation,4.63–68
[4]Gallagher,P. A.,Rhodes,C.A.,Darling,S.M.(2004).ParentsasProfessionalsinEarlyInterven-tion:A ParentEducatorModel.TopicsinEarlyChildhoodSpecialEducationSpring2004,24(1),5–13.
[5]Turnbull,A.P.,Summers,J.A.,Turnbull,R.,Brotherson,M.J.,Winton,P.,Roberts,R.,Snyder,P.,…Stroup-Rentier,V.(2007).FamilySupportsandServicesinEarlyIntervention:A BoldVision,JournalofEarlyIntervention,29(3).187–206
[6]Jung,L.A.,Grisham-Brown,J.(2006).MovingfromAssessmentInformationtoIFSPs:Guidelinesfora Family-CenteredProcess.YoungExceptionalChildren,9(2).2–11
(reviewedtwice)
XinruiLiChongqingNormalUniversityChongqingChinaxinrui223@gmail.com
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 91
EEG Biofeedback in individuals with multiple disability in Slovakia
Alena Jancurová
Abstract: This contribution discusses the possibility of application of neurotherapy car-ried on through EEG Biofeedback in Slovakia. A part of this contribution consists of partial research results carried on in the whole territory of Slovakia. One of the research goals was mapping the basic characteristics and the course of neurotherapy realized through EEG Biofeedback (neurotherapists’ qualification, diagnosis qualification, clients’ age, success rate in the area of sensomotorics, EEG Biofeedback in individuals with multiple disability etc.). Represented results were being found by means of question-naire survey. In the conclusion the contribution contains brief casuistry of child with multiple disability.
Key words: neurotherapy, EEG Biofeedback, individuals with multiple disability, Down syndrome
1 Introduction
Duringrecentyearsa greaterattentionhasbeenpayedtotheEEGBiofeedbackinourconditions.It’sincreasedapplicationhasbeenmoreapparentfromsixtiesofthe20thcentury.Itrepresentsnotonlytheacquisitionofnewinformationinbasicareasofresearch,e.g.researchofneurobiologicmechanismsoforganismintheareaofneuroplasticity,butalsoitsapplicationanditsuseinnumerousindicationsapartfromADHD,ADD,epilepsy,autismetc.A morerecentfield,inwhichEEGbiofeedbackmaybeofgooduseismultipledisability.However,thisissuesstillsuffersfromlackofinterestbothworldwideandinSlovakia.Thisfactisprovedbythinvolumeofprofessionalpublicationsnotonlyinourcountrybutalsoona globalscale.Fromthisreason,wetriedtofindbyresearchinvestigationmoredataandconditionsofEEG
92 Articles JournalofExceptionalPeople,Volume1,Number4,2014
BiofeedbackapplicationinSlovakia.Firstingeneral,thenintheareaofapplicationinindividualswithmultipledisability.Moredetailedfindingsarepresentedbelow.
2 Theoretical implications
TheoreticalimplicationsconcernthemultipledisabilityandthefieldofneurotherapycarriedonthroughEEFBiofeedbackingeneralandwithregardtothemultipledis-ability.
Multiple disabilityMorerecentdefinitionsofmultipledisabilityreflectinfluenceofnewparadigms,changesinphilosophyandapproachtothesepeople.Overall,a manasa humanbe-ingisemphasized,heshouldbeapproachedholisticallyandallmodalitiescreatinghisentityshouldbetakeninconsideration.Numerousdefinitionsarecharacteris-ticindescriptivemanner.Theauthorsaccentuatetheextentofsupport,carefromsocietyandenvironmentwhereindividualslive,possibilitiestoassertintheirlife,developmentofpersonalityintheprocessofeducationorindividual’spositivesandstrongtraits.
Vašek(2003,p. 37–38)identifiestheterm“multipledisability”withformationofnewqualityofdisabilitydifferentfromsimplesumofpresenthandicapsanddis-abilities.Heexplainsthisnewformationofqualityfromtheperspectiveofinter-actionsandmutualoverlappingofparticipatinghandicapsordisabilities,thussocalledsynergiceffect,i.e.newqualityofdisabilityisformed.Inauthor’sopinion,thismultifactorially,multicausally,andmultisymptomatologicallyconditionedphenom-enondeterminessubstantiallyindividualfunctionalityofindividual’scompensatingmechanisms.Insimplifiedform,itexpressesrelationsbetweenindividualfactorsthataffectanddeterminemultipledisabilityasfollows:MD=f(D1,D2…Dn,Sye,Cm).Theresultofthispatternexpressesthatmultipledisability(MD)isfunctionofconcurrenceofparticipatingdisabilitiesorhandicaps(D1,D2…Dn),synergiceffect(Sye)andcompensatingmechanisms(Cm).
Vašekdefines“themultipledisability”alsofromspecialeducationalpointofviewasdataflowdisorder.Thisauthor’simplication(2001,p. 163–164)originatesfromabovementionedfindingswhenhestates,that“basically, it is about possibility of re-ceiving, processing, preserving and operating the data within limited sensoric canals or difficulties associated with transformation of data to knowledge due to mental disability, as well as communicative difficulties due to expression disability”.Simply,thedifficul-tiesassociatedwithmultipledisabilitymay occur in reception of data, in its central processing, expression or combined. In general one can state that multiple disability may occur in various numerous combinations in which inter-individual differences require
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 93
strictly individual approach. Afore mentioned implications and definitions are used by other Check colleagues such as Vítková (2006), Ludvíková et al.(2005) and others.
Neurofeedback, EEG BiofeedbackTyl,Sedláková(1996),Palatová(1999),Tyl,Tylová(2003),Bálint(2006),Hammond(2006),Haward-Jones(2007)andothersbrieflydefineneurofeedbackasmonitor-ingofhumanbrainactivitywithperspectiveofchancetoinfluenceit.Itisa man-nerinwhichbrainwavesaremanagedthroughbiologicfeedbackbasedonoperantconditioning.Manystudiesusethetermslikeneurotherapy,neurofeedback,EEGbiofeedback,brainfitness,takingthemforsynonyms.
Striefel(2004,quotedbySABN,2010)allegesthediffernciesbetweenthetermsneurotherapy,neurofeedbackandEEGbiofeedback.Heconsidersneurotherapya clinicapplicationofEEGBiofeedback,biofeedbackofbloodflow(HEG),audio-visualstimulation(AVS)andothersuitablepracticesdesignedtochangethecorticalactivityinordertoachievevisiblebenefit.Itisbasedonparadigmofpsychophysi-ologicalself-regulation,self-transaction,“I see”phenomenon,butwithoutreductionofoperantconditioningmodel.Thenhestatesthatneurotherapyismostlyappliedasseparatetrainingmethod,usually2–3timesweeklywithdurationatleast35–40min.Onthecontrary,neurofeedbackisconsideredtobea concrete,separatetherapeuticmodality.Neurofeedbackuseselectroencephalographic(EEG)biofeedback,feedbackofbloodflow(homoencephalogramHEG),audiovisualstimulation(AVS)andotherpractices(CT,fMRI)inordertochangethecorticalactivity,tochangetheconscious-ness,tomodifyphysiologicalandpsychologicalfunctioning.Thetermneurofeedbackdoesnotimplymedicalmodelanditisoftenassociatedtosuchapplicationaspeakperformancetraining,specificperformanceoptimisationandothers.TheauthorconsidersEEGBiofeedbacka directprocessofoperantconditioning,inwhichclientusesfeedbackfromspecificEEGparameters(frequencies,durations,amplitudes)inordertomodifybiophysicalandelectrophysiologicaloperationsofownbrain.
January10,2009Internationalsocietyforneurofeedbackandresearch(ISNR)anditsheadquartersratifieddefinitionofneurofeedback.Thedefinitionisofmoredescriptiveandlengthyfeature,hencewementiononlysomesections(ISNR,2010).Neurofeedback(NFB),similarlytobiofeedbackusesmonitoringtools,whichprovidedetaileddataoneverysinglemomentofindividual’sphysiologicalfunctioningcondi-tion.A featurethatdiffersNFBfromotherformsofbiofeedbackconsistsinfocusingoncentralnervoussystem–thebrain.TheessenceoftheNFBtrainingisbasedonbothfindingsaboutbrainintheareaofappliedneuroscienceandvarieddataclinicalpractice.Exceptforbrainactivity,individual’sbehavioural,cognitiveandsubjectiveaspectsaretakenintoconsiderationinNFB,thusnecessityforholisticapproachtoindividualinhisbio-psycho-socialcontextismet.Theintroductionofneurotherapy
94 Articles JournalofExceptionalPeople,Volume1,Number4,2014
applicationrequiresassessmentofbrainactivity(e.g.QEEG,EEG,fMRI…)andindivisual’spsychologicalcondition.
MostcommonindicationsareADHD,ADD,autism,defectsinautismspectrum,epilepsy,specificdefectinlearning(dyslexia,dyscalculia…),variousaddictions,posttraumaticdisorder,depressions,sleepdisorders,pains,braininjuriesandothers(Tyl,1997,Tyl,Tylová,2003,Janský,2006,Niv2013,andothers).However,ifchangesinneuronsaretakenintoconsideration,neurofeedbackaffectsandinduceschangeinEEGactivityfrequencyandamplitude,whatmayinfluenceaccelerationofCNSmaturation.Thusitispossibletoassumea considerablesuccessandassetofneu-rotherapyevenintheareasofpsychopathology,variousdisorders,handicapsanddisabilitieslikediagnosesdisplayingmultipledisability(compareDrtlíková,2007quotedbyGabarík,2011).ProfessionalliteraturerarelydiscussestheissuesofEEGBiofeedbackapplicationinmultipledisability.ThisisprovedbycurrentsignificantlackoftheoreticalandpracticalfindingsconcerningEEGBiofeedbackapplicationinparticulargroupofpeoplebothworldwideandinSlovakia.Giventhecharacterandsubstanceofmultipledisability,itisnotsurprising.Inresearchitisverydifficulttomeetrequirementsfromtheperspectivebothofthemethodologyandcreatinghomogeneousexperimentalandcontrolgroup.
Apartfromepilepsyorautism,casesofchildcerebralpalsybelongtomostpri-marypublishedcasuistriesrelatingtootherdiagnosisdisplayingmultipledisabil-ity.ExpertsfromGermany,AustriaandItaly–Neuper,Műller,Kűbler,Birbaumera Pfurtscheller(2003),inordertoestablishcommunicationthroughcomputer,suc-cessfullyattemptedtoinfluencetheproductionofbrainwavesof32yearsoldmanwithcerebralpalsyonthebasisofEEGandcomputerinterface.A yearlater(2004)Bachers,psychologistanddirectorofNeurofeedbackFoundationpublishesa caseof13yearsoldboywithchildcerebralpalsywhoexperiencedsignificantimprove-mentinbehaviour,reductionofaggressiveness,improvementincommunication,experiencing,reductionofexcessiveneuromuscularirritabilityandoverallintel-lectualandemotionalself-possession.Thiswasachievedfollowing200sessions,infourteendayslastingintervals,with20minutessessiondurations,withlocalisationsoncentralsensomotoricband.After4yearstheboyexperiencedincreaseinIQby24points(IQ72)inverbalpartofWISC-III.ThesameyearMargaretAyers(2004)publishedinUSAhermostsuccessfulcaseofa boycalledJamie(9yearsold)whocouldnotspeak,wasblind,couldnotreadBraillescript,withcerebralpalsy,byschoolstafftakenforautisticandseverelyintellectuallyretardedandnotcapabletolearn.SimilarlytoBachers,theauthorappliedneurotherapyonsensomotoriccortexwithprogressiveinhibitionofthetabrainactivity.Theauthordoesnotdescribeinmoredetaildurationandlengthoftherapy,butshereferstopositivechangesinspeechandmotorics.Theboybegantospeak,feel,composethemusic,danceandplaythepiano.
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 95
Anotherarea(study)isEEGBiofeedbackappliedin7childrenwithDownsyn-drome,aged6–14years,whoparticipatedin60sessions.ThetrainingbeganwithinhibitionthedeltaandthetaandfollowingdecreasedamplitudesofthesefrequencybandsSMRandbetaactivitywasincreased.Surmeli,Ertem(2007),a psychiatristandpsychologistfromIstanbul,Turkeydeclaredpositivechangesparticularlyinthespeecharea,memory,attention,behaviourandbalanceofthesechildren.Later,in2010,theabovementionedauthorspublishedanotherstudyof23participantswithDownsyndromewithmediummentalretardation,aged7–16years.Basedonnumer-ousdiagnosticmethods(QEEG,WISC-R,DPC-P,TOVA)theyfoundoutsignificantimprovementinalmostallparticipantsnotonlyinparentalquestionnairesbutalsoinimprovementinexactresultslikeresultsQUEEGandDPC-P.TheyalsopointedoutthatdespitetwocasesdidnotdisplayimprovementintotalIQ,improvementwasachievedinindividualsubtests,whatcanbeconsidereda success,too.
AlsoYu,Kang,Jung(2012)fromSouthKorearesearchedchangesofbrainwavesandcognitivefunctionsinchildrenwithcerebralpalsythroughneurofeedback.28 childrendividedintoexperimentalandcontrolgroupwereprovidedthistherapywhichconsistedof30min.longsessions2×weeklyduring6weeks.Bothgroupsrecordedstatisticallysignificantdifferencesinspectralfrequencyby50%.Similarly,statisticallysignificantdifferencesweredisplayedinexperimentalgroupinallsubtestsLOCTA(LoewensteinOccupationalTherapyCognitiveAssessment)incomparisonwithcontrolgroup.
InSlovakia,therearetwogenerationsofprofessionalsoccupyingwiththeissuesofneurofeedback.ItisanoldergenerationrepresentedprimarilybyDr. KrivulkawhoasoneofthefirstintroducedandappliedthistherapyintheterritoryofSlovakia.Hetrainedmanyneurotherapistsworkinginvariousterritorialunitsofourcountry.HeratherrecommendedapplicationofEEGBiofeedbackinADHD,ADD,tinnitus,specificlearningdisabilitiesetc(SABN.2010).Duringrecentyearsa newgroupofprofessionalsstemmingfromspeechtherapists,psychologists,specialeducationalists,parentsofhandicappedchildrenandothershasbeencreating.Thiscreationhappensunderthesupervisionofyoung,skilledneurotherapistsrepresentingsocallednewbiofeedbackgeneration,aninstitutioncalledBiofeedbackInstituteLtd.(newgenera-tionbiofeedback.eu).Thisorganisationoperatesinternationally(Checko-Slovak)–inChecktownsJihlava,Praque,Stonařov,inSlovakiainTherapeuticcentreBibianainPrešovanditprovidestrainingofhighqualityinthisarea.Rightthisinstitutionisoneofthefewthatoccupieswithindividualswithmultipledisability.Initspracticeithasmanyskillswithseverelyanddeeplymentally(multiple)retardedpersons.IntheconclusionofthisarticlewecitebriefcasuistrybyMgr. BibianaNaďová,clinicalspeechtherapists,brainfeedbacktherapist,EEGlaboratorianworkinginPrešovinTherapeuticcentreBibianaandinBiofeedbackInstituteLtd.intheCheckrepublic.
96 Articles JournalofExceptionalPeople,Volume1,Number4,2014
3 Research
ConsideringthepartialamountofdataonEEGBiofeedbackapplicationinSlovakiaingeneralanditsapplicationinspecialeducationandinpedagogyofindividualswithmultipledisabilitywecarriedona researchinDecember2012.OneoftheprimarygoalsoftheresearchwastofindoutcurrentstatusofapplicationofneurotherapycarriedonthroughEEGBiofeedbackandpossibilitiesofitsuseininterventionareasofspecialeducationinSlovakia(primarilyincounsellingcentresfocusedontheworkwithpupilswithhealthdisabilities).TheareaofourinterestwasalsotheextenttowhichEEGBiofeedbackwasappliedinindividualswithmultipledisabilityandinwhichpartsoflifeitbroughtbenefitetc.Theprincipalmethodfordatacollectingwasexplorationmethod–a questionnairedistributedtovariousinstitutionsandtoexpertsfromvariousareas.
Intheinitialphaseofourresearchwefocusedoneducationalcounsellingandpreventionschoolinstitutions,www.uips.sk,departmentofclinicalspeechtherapy,licenseddepartmentsofclinicalpedagogy,licenseddepartmentsofspecialpedagogy,neurologicalambulances,organisationswithinthecompetenceofMinistryofHealthofSRaswellasoncertificatedtherapeutistsintheareaofpsychophysiology–neu-rofeedbackandbiofeedbackandpsychologistsregisteredinAssociationofPsycholo-gists.FromtheseorganisationsandexpertsweselectedthoseusingEEGBiofeedback(EEGBFB).Thenweaddressed280organisationsandexperts(ofwhich204wereeducationalcounsellingandpreventionschoolinstitutions).168subjectsoftotalnumberansweredthattheydidnotuseBiofeedback(ofwhich146wereeducationalcounsellingandpreventionschoolinstitutions),35subjectsdidnotansweratalland77organisationsstatedtheyusedEEGBiofeedback(ofwhich24wereeducationalcounsellingandpreventionschoolinstitutions),whatis48,05%return(inviewofeducationalcounsellingandpreventionschoolinstitutions,thequestionnairereturnwas55,81%).Totalnumberofrespondentswas46.Despitelowreturnwedecidedtoassessthegaineddata.Hypotheseswereverifiedthroughstatisticsoftware“R”:MSExcell.Testingofallhypotheseswasbasedoncentrallimittheorembywhichtrans-formationofbinomialvariablescanbelimitconsideredasnormallydividedvariable.P-valuewascalculatedbynormaldivisiondistributionfunction.Zerohypothesiswasacceptedon5%levelofsignificance,i.e.ifp-valueis≥5%,zerohypothesisisaccepted,otherwiserejected.
Research questions and hypothesesTheresearchquestionsfocusedonfourareas:courseandmannerofEEGBFBap-plicationingeneralinSlovakiatheninindividualswithmultipledisability,therapists’attitudestothistherapy,andbenefitofEEGBFBforclients.Forthepurposesofthisarticleweselecttwohypotheses.Firsthypothesiswasasfollows:neurothera-
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 97
pists–specialpedagoguesworkmorewithindividualswithmultipledisabilitythanneurotherapists–psychologists.Secondhypothesis:neurotherapistsworkingwithindividualswithmultipledisabilityconsiderneurotherapycarriedonthroughEEGbiofeedbackmoreineffectiveincomparisonwithotherneurotherapists. ResultsFromthecollecteddataweselectthefollowing.InquestionnaireresearchwefoundoutthatEEGBFBwasmorefrequentlyusedinprivateinstitutions(63,04%)thaninstateownedones.MostofrespondentscamefromPrešovcounty(26,09%),leastfromBanskáBystricacountyandTrnavacounty(6,52%).EEGBGBisusedmostlybywomen(86,69%).Mostfrequentlystatedageoftherapistswas50–60years(30,43%),butalsoaged30–40yearsand40–50years(26,09%).Fromtheperspectiveofprimaryqualificationtherewasprevalenceofpedagogyprofessionals(43,38%),followedbyprofessionals–psychologists(36,69%).Otherprofessionslikespeechtherapists,doc-tors,healthcareworkers,orotherqualificationswererepresentedsimilarly(6,52%).EEGBFBisappliedmostfrequentlyindiagnoses:F90–F98Behaviourdisordersandemotionaldisordersoriginatingmostlyinchildhoodandinyouth(ADHD,ADD,behaviourdisorders…)–93,33%,F81Specificdisordersofschoolfacultiesdevel-opment–60,00%.Diagnosesoftendisplayingmultipledisabilityarerepresentedasfollows:G40epilepsy–11,11%,F84pervasivedevelopmentaldisorders(autism,autismspectrumdisorder)–17,77%,variousinjuries–traumas,inflammations,poststrokeconditions,brainpalsyandotherparalyticsyndromes(G83),mentalretardation(F70–F79)–26,67%.Interestingisa factthat13,33%ofrespondentsdealwithspeechandlanguagedevelopmentaldisorders,developmentaldysphasiaorstuttering.Otherdiagnosesorindicationsareneuroticallyorstressconditionedandsomatomorphicdisorders(F40–F48)–phobia,anxiety,depression,othermentaldisorderslikeemotionalunstableness,organicmooddisorders,migraine(24,44%),addictionsyndrome(4,44%),burnoutsyndrome(4,44%),sleepdisorders(13,33%),others(26,67%).A non-clinicalareabelongstoindication,too–sportsmen,manag-ersetc(13,33%).CategoriesbyagewhichareprovidedEEGBFBmostfrequentlyareasfollows:6–10years(7,47%),11–15(54,35%)–i.e.schoolageofchildren.Itispleasingthatrespondentsstatedevenpre-schoolage–lessthan6years.
InthesecondgroupofquestionsweprovidedEEGBFBinindividualswithmul-tipledisability.Wewereinterestedifneurotherapistsworkedwithmultipledisabilityandiftheydid,inwhatmanner.Wefoundoutthat21of46respondents(45,66%)workedwithmultipledisability,mostfrequentlytwotimesweekly(71,43%)withlongestsessionlasting40–49min(83,33%).Mostfrequentnumberofsessionswere100withdurationapproximately1yearandlonger(47,05%)whatiscloselyrelatedtolengthofpractiseofneurotherapists.Concerningthelifeofclients,theybenefit
98 Articles JournalofExceptionalPeople,Volume1,Number4,2014
fromEEGBFBmostlyineducation(70%),behaviour(60%),personalandhomelife(60%).Therapistspointoutthepossiblecontraindications,e.g.extremerestlessness,incomprehensionofinstruction,incapabilitytofocus,dysfunctionalfamily,severementalretardationetc.A remarkableopinionisthepresenceof“contraindication”intheformof“badtherapist”whatisprovedbynumerousfactscomingfromourresearch.ForthepurposeofmodificationofEEGBFBtraining,respondentsstatenecessityforapplicationofspecial-educationalprinciplesandmethods,adjustingtheenvironmentoradaptingthetraining,buttheydo notstatemoredetailedcharacter-istics.Oneofbiggesttroublesrelatedtomultipledisabilityaretroubleswithclientswithmultipledisabilityandnecessityforindividualapproach.
Thethirdandfourthpartofthisarticleincludeissuesontherespondents’opinionabouteffectiveness,parentalvieworindicationsofconcretechangesoftheirclients.44of46(95,65%)respondentsconsiderEEGBFBeffectivewithidentifyingmostcommonchangesinbehaviourimprovement,reductionofimpulsivity,hyperactivityandsomaticrestlessness.Theobjectofstudywasalsothesensomotoricarea,where73,91%respondentsregisterpositivechanges.Thechangesmostlyrelatedtographo-motorics,visualdifferentiation,auditorymemory,finemotoricsorimprovementinspatialorientation.84,62%respondents–parentsviewtheEEGBFBpositively.Inaddition,theparentsclaimedlackofinformationonthistherapyinthepublicorpeoplehavinginadequateexpectations.Neurotherapistsalsomentionedincreaseddemandsonparents(regularsessionattendance,financialcoverageofthetherapyetc.).Anotherobservationisthatparentsexperiencescepticornegativeattitudeofneurologists,psychiatristsorotherphysicians.Itshouldbenotedthattherespond-entsencounterednegativeparentalattitudetowardsthetherapywhatmightresultfromabovementioned“contraindication”intheformofinadequateneuroterapists’qualification.TheoverallattitudeofneurotherapiststotheEEFBFBissimilarlypositive–78,57%.Onlyonerespondentclaimedthecontrary.Anotheropinionconsistsincomprehensionofcomplexapproachtoclientandnotoverestimatingthetherapyandthenecessityforimprovingone’sprofessionalismorcooperationandmotivationofclientsandtheirparents.Inthefirsthypothesiswecametotheconclusionthataccordingtotestofnormalvariablep-valueequalsto12,96%,whatismorethan5%.Onthebasisofthisresult,wecannotrejectthezerohypothesisthatneurotherapists-specialeducationalistsdoesnotworkwithindividualswithmultipledisabilityequallyorlessthenneurotherapists–psychologists.Thefirsthypothesishasnotbeenprovedcorrect.
Inthesecondhypothesisweassumedthatneurotherapistsworkingwithindividu-alswithmultipledisabilityconsiderthistherapycarriedonthroughEEGBiofeecbackmoreeffectivecomparedtoothersneurotherapists.Inthesimilarwedetectedp-value11,47%greaterthan5%.Fromthisreasonitwasnotpossibletorejectzerohypoth-esisthatneurotherapistsworkingwithindividualswithmultipledisabilityconsider
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 99
theneurotherapycarriedonthroughEEGBiofeecbackequallyineffectivecomparedtootherneurotherapists.Thesecondhypothesishasnotbeenprovedcorrect,too.
4 Conclusion and discussion
Theresearchresultsindicateseveralimportantmoments.First,thereisa lackofinstitutionsfocusingontheEEGBiofeedbackinSlovakia.Mostofthemoperateinprivateareawhereclientmustpayfortheservices.Weknowfromtheexperiencethatparentshavingchildrenwithmultipledisabilityoftencomefrompoorersocialconditions.Obligationtopayforserviceconsiderablylimitspossibilitiesofuseofthetherapy.Giventhisfact,however,itisnecessarytorealizea shiftinthegeneralperceptionofprovidingtheservicesbyproviders,businessmen,publicaswellastheviewofprovidingtheservicesinothercountriesofEuropeanUnionandalltheworld.ThesehighlyspecializedservicesaremuchmoredevelopedinothercountriesthaninSlovakia.SurprisingisthatEEGBiofeedbackismostlyusedintheeasternSlovakia,especiallyinPrešovcounty.OnthebeginningoftheresearchweassumedthatneurotherapywouldbemostlyusedineconomicallymoredevelopedregionsofSlovakialikeBratislavacountry.TheresultsindicatethatBratislavacountrybelongedtocountieswiththeleastnumberofinstitutionsusingEEGBFB.
Theissueconcerningthefinancing,serviceavailabilityandtheirapplicabilityiscloselyrelatedtostatelegislativeconditionsandadjustmentofvarioussystemsdesignedforstatefunctioning.Duringrecentyearswecanseethedeepeninggapbetweenprivateandstatesector.Thereforeitisnecessarytoappealmoretostateauthoritiesandinstitutionsforfurtheroptimizationthefunctioningofindividualsectors,thusincreaselifequalityofpeople.
AnotherviewonlownumberofinstitutionsprovidingEEGBFBisrelatedtonecessityofhighprofessionalismdemandedfromtherapists,necessityofinterdis-ciplinaryknowledge,cooperationwithotherexperts,sufficientpatienceandasser-tiveness,alltheseencounteringnumerousobstacles.Inaccordingtorespondentcooperationwithphysicians,neurologistsisoftenproblematicandconnectedwithgreatscepticismresultingfrominsufficientknowledgeaboutthetopic.Anothertopicfordiscussionisthegeneralpublicawarenessoftheneurotherapyandreparationthenegativeopinionaboutitsineffectiveness.
InviewofspecialeducationitispleasantthatEEGBFBisdealtwithmostlybyexpertsfromthisarea,possiblypsychologists.ThuswecanassumecoverednecessityofindividualapproachtoclientswithADHD,ADD,aswellasindividualswithmul-tipledisability.Despitethis,expertspointouttheproblemsconcerningapplicabilityofconcretemethods,techniquesorspecialeducationalprinciplesintheirpractice.Thencethenecessityforfurthereducationandsupplynew,clearerfindingsandtheir
100 Articles JournalofExceptionalPeople,Volume1,Number4,2014
usageintheareaofmultipledisability-relatedpedagogy.Anotherpointofinterestforneurotherapistsisdemandfordatainthishighlyspecializedareaofneurotherapy.Herewecanseenecessityforconnectionseveralsectorslikemedicine,healthcare,pedagogy,psychologyandothers,allthisintheformofdiscussions,courses,lecturescarriedonintheeducationalinstitutions.
Inaddition,onthebasisofrespondents’statementwecanpolemisethequalityofprovidedtrainingsconcerningthebiofeedbackandneurofeeedback.Fromnumeroustelephoneinterviewsandfromownexperiencewecanconfirmthatthereexistmanytrainedexpertsinneurotherapywhotookthetrainingsforinadequateandsketchy.Thisfindingresultsinquestionthathowitispossibleandwhichinstitutionprovidesknow-howofhighquality.Whatdo towithtrainedoneswhoinvestedmuchmoneyanyeffortsbutdo notworkwiththistherapyrightduetomentionedreason?Oneofthesolutionsmayinvolvevariouseducationalactivitiesfocusedoncompletionthenecessaryknowledgeandgainadequateeruditioninapplyingthistherapy.
Similarly,itisevidentthatalmostallneurotherapistsdescribepositiveeffectsandassetofneurotherapyinbroadrangeofdiagnoses.Thismayresultinmoreeconomicinvestmentthefinancesondrugs,healthcareaccessoriesetc.andmoreeffectiveprovidinghealthandspecialeducationalservices.Takingintoconsiderationthefactthatsignificantimprovementinbrainactivityfunctioninginsuchseverediagnoseslikecentralnervoussystemdisorders,posttraumaticconditions,childcerebralpalsyetc.happenswithinoneyear(howmuchsoonerinlessseverediagnoses)andthathowmuchmoneyendeffortsisspentonthehelpthesepeoplewecanexpresstheopinionthatwithproperapplicationofEEGBFB,fasterandmoreeffectiveuseoftheirpotentialsandincreaseintheirlifequalitymayhappen.Giventhisfactanideaoccursthatexpertworkingwithmultipledisabilityburnoutveryquicklyjustduetoverylowfeedbackonprovidedinterventionsfromtheirclients.Incasethatexpertsseetheimprovementandtheirworkfruitfulinshorterperiod,weassumethattheywillhavemoremotivation,enjoyandsenseofsuccess.
Therearemanyareaswhichcanbediscussed,however,forthepurposeofthisarticle,weconsidertheabovementionedassufficientforfurtherreflectingandinfer-ringfurtherstepstowardstheprogression.Oneofthestepsisnecessityoffurtherresearch.
CasuistryAsa demonstrationofEEGBiofeedbackwithmultipledisabilityweselecta casestudyofa child,carriedonbyMgr. BibianaNaďováinBiofeedbackInstitutinPrague.Thechildis8yearsoldgirlwithdipareticchildcerebralpalsy,lightretardation,stra-bismus,auditorydisorder,delayedspeechdevelopment,impulsivity,hyperactivity.
Personalhistory:a childfrom2.pregnancywithoutcomplications,prematurebirth(26thweek)withoutcomplications,too.Fora smallbirthweight,prematurity
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 101
andthecomplicationsinpostnatalperiod(frequentinfections,meningitis)placedtoincubatorfor4months.Diagnosedwithcerebralpalsy,dipareticfrom(tiptoewalking,introducedphysiotherapybyVojta)associatedstrabismus(forcorrectionanoccluderfordominanteyerecommended).Suspectextensivehearingerror(sherefuseda hearingaid)whichresultedininadequatecomprehensionthespeechfol-lowedbydelayinspeechdevelopment.S.communicatedwithscreaming,reluctanttoexpressinanotherway,e.g.signscommonlyusedbyherfamily.I casethepeoplearounddidnotunderstandordidnotmetexpressedrequirement,dissatisfactionwasagainexpressedwithanger,reluctance,scream.Shebehavedsociallysimilarlytoindividualswithautismspectrumdisorder.Internalandexternalirritabilityandlowcapabilityofconcentrationassociatedwithhyperactivity.Frominfancyshedis-playedcontinuousmotoricrestlessness.S.isverysmartandcurious.Duetothesesociallyandeducationallyhardlysuggestibleexpressionsa suspectforassociatedlightmentalretardationofS.wasexpressed.Motoricswascharacterisedasawkward.Graphomotoricsinaccurate,contentandformallyunderaverage.Hygienehabitsob-served,withoutassistance.Presentverylowabilitytofocus,impatience,impulsivity,expressionsofmotoricrestlessness,awkwardness,andunwillingnesstocommunicatelargelyprecludeanyeducation(testimonyofmotherandschoolteacherfromthepreparatorygradeperiodinspecialkindergarten).PhysiotherapyusespracticesbyVojta,speechtherapy,reflextherapy,basalandneurodevelopmentalstimulation,craniosacraltherapyetc.Followingspecialkindergartensheattended1.gradeofpreparatorylevelinspecialelementaryschool.Nowadayssheattends1stclassofelementaryschoolforhearingimpaired.
Familyhistory:S.livesincompletefamilywitholderbrother(10yearsold)whoishermodel.Thebrotherwashyperactiveinpreschoolage,approximatelyat7yearsofagehyperactivityceasedinadvertently.BothparentssharedcareofS.,mothermoreactive.
IntroducedtherapyNFB.Mainobjectiveoftrainingwastotalsatisfactionmainlyofregulationofhyperactivity,impulsivebehaviouralexpressions,communicationdevelopment,improvethemovementcoordination.Theroleofthetherapistwasacceleratingthebrainactivitytonecessaryfrequencies.Trainingprotocolofgeneralstabilisationsettoinhibitslowdeltaandgradualincreasingelectricbrainactivitiestofasterthedelta,theta,prealpha,alphaandfinallySMR.
Summary:S.participatedin180sessionsduring2years(from6.to8.yearofage).S.useshearingaidwhichsherefusedandtoredownbefore.Shecommunicateswithnarrativespeech(simpleterms),addedwithsigns.Inaccordingtomothershetriesverymuchtocommunicate,properlyarticulate,whatshecannotsaytheresheusessigns.Theconcentrationtimeconsiderablyextended,hyperactivitydecreased(con-stantrunningaroundtheroomathomeandatschoolceased)shewatchesfairytalesinnormalspeed–before32×accelerated.MatherclaimedthatS.couldconcentrate
102 Articles JournalofExceptionalPeople,Volume1,Number4,2014
on1–2wordinreadingonthebeginningofschoolyear,threelinesoftextattheendofsemester,butreadingspeeddidnotincrease.InNFBtrainingsheisabletoconcentrateduringwholetime,beforeitwasa problemtoendureinfirst5minlonground.Behaviourdisplayedsedation,minimalsignsofimpulsivereactions.FirsttimeinherlifemotherexperiencedthemomentswhenS.playedaloneandwholehour,doesnotrequirecontinuousattentionofherparentsorbrother,sleepspeacefullythroughthenight.Inmotoricareabothmotherandschoolteacherobservedslightimprovementinmovementcoordination.Shehandleswritingwell,writesclearly,canwritealoneevenfirstwordsfrommemory.InthebaselineEEGwasfundamentalactivityofdeltahighamplitude,i.e.immaturityofCNSforthechild’sdevelopmentalphase(after6thyearprealphaupalphashouldbedisplayed).After100th session and controlEEFtherewasobservedprealphaandalphaasbasicbrainactivity,butwithremnantsofthedeltaandtheta.
Conclusion ThearticlediscussesEEGBiofeedbackinindividualswithmultipledisabilityinSlo-vakia.Wesubmittedpartialresultsfromresearchinthefield.Webelievethefindingsmaybecomebasisforbothfurtherresearchandapplicationofneurotherapy.
5 References
[1]AYERS,M.2004.NeurofeedbackforErebralPalsy.InJournal of Neurotherapy.[online].2004.vol. 8,no.2.p. 93–94[cit.2009-03-05].Dostupnéna internete:http://www.flexiblebrain.com/Ayers%202002%20JNT%20.pdf.ISSN1530-017X.
[2]BACHERS,A.2004.NeurofeedbackwithCereberalPalsyandMentalRetardation:a casereport.InJournal of Neurotherapy.[online].2004.vol.8,no.2.p. 95–96[cit.2009-03-05].Dostupnéna internete:http://www.tandfonline.com/doi/abs/10.1300/J184v08n02_08.ISSN1530-017X.
[3]BÁLINT,M.2006.Popis metódy EEG-Biofeedback.[online].[cit.2012-09-14].Dostupnéna inter-nete:http://www.nfb.sk/node/5.
[4]BIOFEEDBACKINSTITUT.s.r.o.Kazuistiky.10s.Strojopis. [5]GABARÍK,M.2011.Neurofeedbackv špeciálnopedagogickejpraxi.InPedagogica specialis XXV.
Bratislava:UniverzitaKomenského,2011.ISBN978-80-223-2862-3.s.170–176. [6]HAMMOND,D.C.2006.WhatIsNeuroffedback?.InJournal of neurotherapy.[online].2006,
vol.10,no. 4,p. 25–36.[cit.2012-10-12].Dostupnéna internete:http://www.victorzelek.com/What_is_NFB.pdf.ISSN1530-017X.
[7]HAMMOND,D.C.2011.WhatIsNeuroffedback?Anupdate.InJournal of neurotherapy.[online].2011,vol.15,no.4,p. 305–336.[cit.2012-10-12].Dostupnéna internete:http://www.isnr.org/neurofeedback-info/WhatIsNeurofeedbackUpdate.pdf.ISSN1530-017X.
[8]HAWARD-JONES,P. 2007.Neuroscience and Education: Issues and Opportunties.London:InstituteofEducationUniversity,2007.28s.ISBN0-85473-741-3.
[9]JANSKÝ,P. 2006.Studie využití metodz EEG biofeedback při úpravě hyperkinetických poruch chování v praxi speciálních školských zařízení pro výkon ústavní a ochranné výchovy: Závěrečná zpráva. HradecKrálové:Detskýdiagnostickýústava Střediskovýchovnépéče,2006.152s.
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 103
[10]LUDÍKOVÁ,L.2005.Kombinované vady.1.vyd.Olomouc:UniverzitaPalackéhov Olomouci,2005.138s.ISBN80-244-1154-7.
[11] MÁRKUSOVÁ,E.2001.K problematikerozvíjaniaosobnostiviacnásobnepostihnutých.InEduká-ciou k integrácii viacnásobne postihnutých detí:Zborníkpríspevkovz odbornéhosemináraz cyklu:Výchovaa vzdelávanieznevýhodnenýchdetí.Bratislava:IUVENTA,2001.ISBN80-88893-73-9,s. 73–74.
[12]NEUPER,C.–MÜLLER,G.R.–KÜBLER,A.etal.2003.ClinicalapplicationofanEEG-basedbrain-computerinterface:a casestudyina patientwithseveremotorimpairment.InClinical Neu-rophysiology. [online].2003.vol.114,no.3.p. 399–409[cit.2013-03-03].Dostupnéna internete:http://ac.els-cdn.com/S1388245702003875/1-s2.0-S1388245702003875-main.pdf?_tid=f91baf50-874d-11e2-a1cf-00000aab0f6c&acdnat=1362678153_36625d687aee31dfaa80d0a5b506552a.
ISSN1537-1603.[13]NIV,S.2013.Clinicalefficacyandpotentialmechanismsofneurofeedback.InPersonality and Indi-
vidual Differences.[online].2013.vol.54,no.6.p. 676–686[cit.2013-03-03].Dostupnéna internete:http://ac.els-cdn.com/S0191886912006241/1-s2.0-S0191886912006241-main.pdf?_tid=99723d40-85e9-11e2-b7d8-00000aab0f27&acdnat=1362525092_f5a782f56b59af70e9447534282e76ae. ISSN0191-8869.
[14] OPATŘILOVÁ,D.2005.Metody práce u jedincůs těžkým postižením a více vadami.1.vyd.Brno:Masarykovauniverzita,2005.147s.ISBN80-210-3819-5.
[15]PALATOVÁ,H.1999. EEG – Biofeedback jako prevence u předškolních dětí.[online].1999.4s.[cit.2013-03-05].Dostupnéna internete:http://www.eegbiofeedback.cz/ke_stazeni.
[16]SHOGREN,K.A.et.al.2009.Perspectives.In Intellectual and developmental disabilities [online].2009,vol.47,no.4,p. 307–319.[cit.2011-01-06].Dostupnéna internete:http://scholar.google.sk/ scholar?q=SHOGREN+Perspectives.+In+Intellectual+and+developmental+disabilities+[&hl=sk&as_sdt=0&as_vis=1&oi=scholart.
[17]SÜRMELI,T.–ERTEM,A.2007.EEGneurofeedbacktreatmentofpatientswithDownsyndrome.In Journal of Neurotherapy.[online].2007.vol.11,no.1.p. 63–68[cit.2009-03-05].Dostupnéna internete:http://www.vishee.com/xinyi/web/new5/uploadpic/s201275285662936.31.pdf.
ISSN1530-017X.[18]SÜRMELI,T.–ERTEM,A.2010.PostWISC-RandTOVAimprovementwithQEEGguidedneu-
rofeedbacktraininginmentallyretarded:A clinicalcaseseriesofbehavioralproblems.In Journal of Neurotherapy.[online].2010.vol.41,no.1.p. 32–41[cit.2013-02-05].Dostupnéna internete:http://www.ncbi.nlm.nih.gov/pubmed/20307014.ISSN1530-017X.
[19]ŠVARCOVÁ,I.2000.Mentální retardace:vzdělávání,výchova,sociálnípéče.1.vyd.Praha:Portál,s.r.o.,2000.184.s.ISBN80-7178-506-7.
[20] TYL,J.1997.Efektivita terapie lehkých mozkových dysfunkcí s využitím EEG Biofeedback tréningu:Závěrečnázprávao řešenígrantuInternígrantovéagenturyMinisterstvazdravotnictvíČR.Praha:1.lékařskáfakultaUK,1997.66s.
[21] TYL,J.–SEDLÁKOVÁ,V.1996.EEGBiofeedbacktréningna 1.LF:Nováneuroterapeutickámetodázaváďenav ČR.InPropsy.[online].[cit.2009-05-31].Dostupnéna internete:http://www.psychoterapie-tyl.cz/clanky.php.
[22] TYL,J.–TYLOVÁ,V.2003.Nové metódy nápravy: Komplexní příručka pro pedagogy, lékáře, psychology… i rodiče dětí s LMD.3.vyd.[online].Praha:AAPBČR-BiofeedbackInstitut, 2003.23s.[cit.2009-03-05].Dostupnéna internete:http://www.eegbiofeedback.cz/ke_stazeni.
[23]VANČOVÁ,A.2010.Pedagogika viacnásobne postihnutých.1.vyd.Bratislava:KKTo.z.a UKPeDF,2010.173s.ISBN978-80-970228-1-5.
[24]VAŠEK,Š.2003.Základy špeciálnej pedagogiky.1.vyd.Bratislava:Sapientia,s.r.o.,2003.211s. ISBN80-968797-0-7.
104 Articles JournalofExceptionalPeople,Volume1,Number4,2014
[25]VÍTKOVÁ,M.2006.Somatopedické aspekty.1.vyd.Brno:Paido,2006.302s.ISBN80-7315-134-0.[26]YU,J.–KANG,H.–JUNG,J.2012.EffectsofNeurofeedbackonbrainwavesandcognitivefunc-
tionsofchildrenwithcerebralpalsy:a randomizedcontroltrial.InJournal of Physical Therapy Science.[online].2012.vol.24,no.9.p. 809–812[cit.2013-02-05].Dostupnéna internete:https://www.jstage.jst.go.jp/article/jpts/24/9/24_809/_pdf.ISSN2187-5626.
Internetové zdrojeInternet resources.www.biofeedback.sk www.newgenerationbiofeedback.eu www.isnr.org
(reviewedtwice)
PaedDr. AlenaJancurová,PhD.UniverzitaKomenskéhoFacultyofEducationRačianska59BratislavaSlovakRepublice-mail:[email protected]
JournalofExceptionalPeople,Volume1,Number4,2014 Bookreviews 105
Quality of life of an individual with sensory impairment: Modern word or hot issue?
LUDÍKOVÁ,L.,2012.Pohledy na kvalitu života osob se senzorickým postižením.Olo-mouc.ISBN978-80-244-3286-1.
Reviewed by Hana Majerová
Qualityoflife,a modernconceptanda practicalphenomenonthathasbeenreflectedinprojectscarriedoutbymanyinstitutesinrecentyears.Thepublication‘Viewsofthequalityoflifeofpersonswithsensoryimpairment’reflectsa rangeofapproachesinspecialeducationwitha commondenominator–requirementfora fulllifeofanimpairedindividual.TheauthorsofthepublicationLibušeLudíkováetal.(DitaFinková,LuciaPastieriková,KateřinaStejskalová,MartinFink,IvanaHorvátová,HanaJoklíková,PetraTomalová)provideaninsightintospecificareasoflifeofa personwithsensoryimpairment.
Anindividual’sviewofwhatisqualitycouldbesubjectivetoa largeextentifwedidnotknowthecurrentresearchandpractice-basedtheoreticalbackground.Thepresent206-pagepublicationoutlinestheaspectsofthequalityoflifeofpersonaswithvisualandhearingimpairmentatvariousages.
Thebookisdividedintothefollowing7chapters:1. Qualityoflife–theoreticalbackground2. Qualityoflifeofchildrenwithvisualimpairmentwithanemphasisonthequality
oflifeofchildrenwithROP3. Qualityoflifeofpupilswithvisualimpairment4. Qualityoflifeofemployeesinschool-basedcounsellingcentres5. QualityoflifeofstudentswithvisualandhearingimpairmentatPalackyUniver-
sity,Olomouc6. Employmentasoneoftheindicatorsofthequalityoflifeofanindividualwith
hearingimpairmentinadulthood7. Qualityoflifeofseniorswithvisualimpairmentinthecontextofthedegreeand
qualityofawareness
106 Bookreviews JournalofExceptionalPeople,Volume1,Number4,2014
Thecontentandfocusofthepublicationprovideclearandattractiveinformationaboutthequalityoflifeofpersonswithsensoryimpairment.Thetheoreticalframe-workisaptlysupportedbya practicaldimension.Thetextisenrichedwithgraphsandtablesenablingquickunderstandingoftheresultsoftheresearch.Thegrammarofthetextisofa highlevelandtheliteratureusedbytheauthorscorrespondswiththetopicalityandprofessionalfocusoftheissue.
Thereflectionofthequalityoflifewillalwaysbesubjectivebecauseanindividual’slifecannotbea quantitybutisalwaysa qualitythatshouldbe‘livedtothefullest’.Suchlivingisinmanyaspectsa questionofpersonalunderstanding,lifephilosophy,andcognitiveaswellasemotionalapproaches.Thelifeofanindividualwithsensoryimpairmentinvariousagesandtheprofessionsofpersonsinterveninginthetargetgrouparetheareasthatshouldbefurthermonitoredandinvestigated.
A professionalundoubtedlyinfluencesthequalityofservicesrenderedtoim-pairedindividuals.Similarly,anindividualwithsensoryimpairmentactivelyaffectsthefeelingsofownpersonalsatisfactionwithlife.Thepublication‘Viewsofthequalityoflifeofpersonswithsensoryimpairment’canbeconsidereda successfuloverviewofthismultidimensionalissue.
Mgr. HanaMajerováInstituteofSpecialEducationStudiesFacultyofEducationPalackyUniversityŽižkovonám.5771 40OlomoucCzechRepublice-mail:[email protected]
JournalofExceptionalPeople,Volume1,Number4,2014 Bookreviews 107
Information for authors
Basic information about the JEPJournal of Exceptional People (JEP),shouldbebasedon2timesa yearpublishingperiodinbothelectronicandtraditional–printedform.ToguaranteeprofessionalstandardsoftheJournalwehaveappliedtothefrontofspecialneedsteachers,psy-chologists,therapistsandotherprofessionalsintheU.S.,Finland,Spain,Slovakia,Hungary,China,Russia,Polandandothercountries.Abovementionedscientificjournalaspirestoberegisteredintotheinternationaldatabaseofimpactedperiodicals(JournalCitationReports).
Journal of Exceptional People (JEP)willprovideresearchstudiesandarticlesonspecialeducationofexceptionalpeople.Thisareacoversindividualswithdisabilitiesand,ontheotherhand,giftedpersons.TheJournalwillfocusonpublishingstud-iesandarticlesinthefieldofeducation,socialscience(sociology)andpsychology,specialthematicissuesandcriticalcommentaries.ThepublishinglanguageoftheJournal of Exceptional People istobeEnglishexclusively.
Theperiodicalisgoingtobepublishedsincetheyear2012bytheInstitute of Special – pedagogical Studies at Palacky University in Olomouc.
Instructions for authors Scopeofthearticleisstrictlygiven–mustn’tbemorethan20 pagesformattedac-cordingtemplate(includinglistofreferences,images,tablesandappendices).ThebodyofthetextshallbewritteninlettersofTimesNewRomansize11b.Differentstylesareundesirable,usethenormaltemplateandalsopleaseavoidnumberingofpages.Thefinalversionofthearticlesoughttobeformattedtotheparagraphs.TheEditorialBoardreservestherighttorefusecontributions.
Thefileshouldbesavedunderthesamenamewiththesurnameoffirstauthorandsentina formatwiththeextensiondocordocx(MSWord2007andupperversions).Beforesendinga filewiththepaperitisrequiredtoscanforpossibleinfectionsorviruses.Authorsareresponsibleforcontentandlinguisticaspectsofthecontributions.Please,do notnumberpages.Images,graphsandtablesshouldbenumberedaccordingtotheexample(Figure 1: Preparatory exercise [TimesNewRoman11b,italics]).
Itishighlyrecommendedtospendthenecessarytimecorrectingthepaper–everymistakewillbemultiplied.Postedpapersunsuitableforprintingwillnotbepublished!Ensureappropriatedivisionandbalancebetweenthevariouspartsofthecontributionandaestheticplacementofpicturesanddiagramsaswellastheirquality.Terminologicalcorrectnessandformalityarerequired.
108 Articles JournalofExceptionalPeople,Volume1,Number4,2014
PleasenotethatpublicationofpapersintheJournalwillbefreeofcharge.Sectionheadingsshouldbenumberedandwritten,asdescribedinfollowing
manual:standardsigns,symbolsandabbreviationsaretobeusedonly.Monosyllabicprepositionareoughtnottofigureattheendoftheline,butatthebeginningofthenextline–theycanbeshiftedusingthe“hardreturns”CTRL+SHIFT+SPACE.
Thelistofliteratureandreferencestoresourcesoughttofollowthesenormsanddirectives:ČSNISO690andČSNISO690-2orPublicationManualoftheAmericanPsychologicalAssociationAPA.
Completedcontributionshallbesentinelectronicformtothemailaddress:[email protected]:JEP–contribution
Compliance with publication ethicsJEPeditorialboardensurescompliancewithpublicationethicsanddoesthisina followingway: Editorsboardguarantees:– Thatinthereviewprocesstheauthordoesnotknowtheidentityofthereviewer,
andviceversa– Thereviewerandcontributordoesnotcomefromthesameorganizationorin-
stitution – Thatifitisproventhatthereweresomeeditorialorauthor’serrorsinthepub-
lishedarticle,thisfactwillbepublishedinthenextissue
Authorsagreetothefollowing:– Thattheirpresentedtextsareoriginalworks– Thattheystatethereferencesinaccordancetostandardspecificationsforciting
sources(standardsISO690,ISO690-2orthePublicationManualoftheAmericanPsychologicalAssociationAPA).
The criterion relating to the quality of articlesContentcriteria:Doestheauthorsstatethecurrentstateofknowledge?Isthechosentopica newone?Isthearticlecomprehensiveenough?Didtheauthoruseappropriateterminology?Arethesampleandthemethodsusedinscientificpapersadequatelydescribed?Arethequantitativeorqualitativemethodologyandinterpretationofresultsreliable?Doesthetexthaveclearconclusions?
JournalofExceptionalPeople,Volume1,Number4,2014 Articles 109
Formalcriteria:Didtheauthorcomplywiththestandarddivisionofthearticle(abstracts,keywords,literature…)Isthetextclearlydividedintochapters?Arethetablesandgraphsclearandunderstandable?Isthetextnottoolongortooshort?Isthelistofusedcitationsources(literature)notdisproportionatelylarge?
Recommendations – Editors conclusions – Textwillbepublished– Textwillbepublishedafterminormodifications– Textwillbepublishedafterreworking– Textwillbereviewedagain– Textwillnotbepublished
Top Related